This Transcript is Unedited
Room 705A
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201
AGENDA ITEM: Welcome and Introductions –
DR. SIMON COHN, Chair Pro Tempore
DR. COHN: Now, good morning. I want to call this meeting to order.
This is the first day of two days of meetings of the National Health Information Infrastructure Workgroup of the National Committee on Vital and Health Statistics. The Committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.
I'm Simon Cohn, a member of the Committee and the Associate Executive Director for Information Policy for Kaiser Permanente.
I'm actually chairing today and standing in for John Lumpkin, our Chair, who is phoning in and I think will make some comments after we're done with introductions. Obviously, as we commented just now, John, hopefully you will be feeling better soon, and we're sorry that you were overused during your holidays.
Obviously, I want to welcome fellow Subcommittee members, HHS staff, and others here in person and welcome those listening in on the Internet. And apparently we are not on the Internet yet; we'll let everyone know when the Internet goes up.
Obviously, for when we are on the Internet, I do want to remind everyone to speak clearly and into the microphone.
With that, let's have introductions around the table and around the room. For those on the National Committee, I would ask if you have any conflict of interest related to any of the issues coming before us today, would you so publicly indicate during your introductions?
With that, Mary Jo, would you like to start with the introductions?
[Introductions. No conflicts of interest stated.]
DR. COHN: And John, would you like to introduce yourself?
DR. LUMPKIN: I certainly would. Can you hear me?
DR. COHN: Great.
DR. LUMPKIN: My name is John Lumpkin, and I am a Senior Vice President of Robert Wood Johnson Foundation and I am Chair of the Workgroup and the full Committee.
DR. COHN: Okay. Do you have any conflicts of interest today?
DR. LUMPKIN: I guess I should probably state that, as you note, there are two of our staff who are there and we're very interested in the subject as a co-funder with the Department, which is not a conflict but I thought
I should at least share that.
DR. COHN: Okay. And I guess I should chime in also that my organization, Kaiser Permanente, is of course very interested in this whole area, and actually we're having one of my colleagues, Dr. Andy Wiesenthal, testifying this afternoon, so in the interest of full disclosure that everyone should know. But I don't think the topics he will be discussing will be obvious conflicts of interest.
Linda?
MS. FISCHETTI: The Veterans Health Administration will have two testifiers as well. I didn't mention that earlier.
DR. COHN: Okay. Linda, thank you.
Okay, now the focus on the next two days is on personal health records, and actually this is the second set of hearings on this topic and I'm sure not the last.
This morning, we begin with a discussion of Federal policy issues related to personal health records. I think first, Cynthia Baur. We're happy to have you here and thank you for taking the lead.
And then David Lansky will be following up with additional information and perspectives, followed by an open discussion.
Our first panel of the morning, which will be after the break, is on the consumer perspective, which will be Panel 1, and then it'll be followed in the afternoon by a second panel relating to the consumer perspective.
In the mid-afternoon, we then have a panel on sort of provider-based perspectives relating to personal health records. Then there'll be a discussion as well as open mike late in the afternoon.
As always, I do want to remind everyone that we do welcome comments and questions from those in attendance related to any of the issues coming before us today. We will have a specific open microphone period late in the afternoon in case anybody has any brief statements they want to make.
We also, of course, for those on the Internet listening to transcriptions of this, do welcome emails or letters on any of the subjects coming before us today or tomorrow.
Now, today we hope to adjourn by five o'clock. Tomorrow, we'll start off about 9 o'clock.
My understanding, in the agenda it appears that there's a discussion and then a panel; I think we're going to try to move the panel forward so that becomes the first order of business tomorrow morning, if we can do this logistically, and then have discussion after that, with the intent that we will be adjourning by about 12 noon tomorrow. Hopefully, that is agreeable to everyone.
Any questions or comments before we lead off into the first panel? John, do you actually have any opening comments that you would like to make?
DR. LUMPKIN: Sure. I think I would just like to add emphasis that as a Committee, when we introduced our vision of the national health information infrastructure almost four years ago now, we believed that if this was going to work, it needed to work in three dimensions.
And one was the health care provider, the other one was in the population health dimension, and the third was the personal health dimension, of which a personal health record is an important tool in that respect.
And I personally firmly believe, and I think that others in the Committee that really for us for us to make the progress that we're going to need that patients need to be in a position of being able to be active participants in their care.
Clearly, those studies that have come forward, the chronic disease models, others, have demonstrated that when patients are actively engaged in the management of their own illnesses, partners with their care givers, the outcomes are much better.
And so, having this hearing today and tomorrow, the further our understanding of what's going on in the field and what may be needed will be an important step in enabling the information technology-based transformation of health care, improving quality, effectiveness and efficiency.
So I would like to thank everyone who's there in person, even though I could not make it myself, and let's have at it.
DR. COHN: Okay, John, thank you very much.
I also I think would emphasize, as John has, that many people are in the midst of writing responses to HHS from the requests for information on the national health information network and at least in some of the draft responses I've been seeing and been asked to comment on, I'm seeing more and more thought being put into the issue of how patients relate and even non-patients, healthy people who are not patients, relate to the issues of electronic health records.
And obviously the issue of personal health records is really, I think, an upcoming discussion item which I think we'll see a lot more thought being put into over the next year.
At least, that's the opinion I'm getting as I'm seeing these responses.
Now, with that, Cynthia, would you like to lead off? And we'll let Cynthia and David both make your presentations and then we'll have Subcommittee discussion, actually workgroup discussion. Please.
AGENDA ITEM: Presentation – CYNTHIA BAUR
MS. BAUR: Thank you, Simon.
Again, I'm Cynthia Baur from the Office of Disease Prevention and Health Promotion and the eHealth Advisor within the Office. And I'm just going to speak for a few minutes to provide a frame on why ODPHP had asked David Lansky, when he was at FACCT, to undertake this study.
For several years, ODPHP has recognized the potential of personal health records as a public health tool to enhance traditional prevention activity.
The Department has many large programs such as Medicare and the chronic disease programs, and although they affect a large number of people, they do not reach many segments of the public, particularly those in need of preventive health information and services, nor do these programs cover many of the prevention and information activities that HHS is already invested in.
Personal health records are a unique mechanism to engage individuals at different stages, different life stages, in their own health, and we also see them as a novel platform for prevention activities that could include information, recommendations and attitudinal and behavioral messages.
Even though PHRs are tools for individuals for their own health management, ODPHP perceives that PHRs can be used as a type of prevention tool that can have broad population effects, and apart from what happens with EHRs, intelligently designed PHRS that are supported by sound distribution strategies have the potential to be a mass phenomenon.
So therefore we commissioned this study on the Federal role in PHRs to identify the different perspectives and strategies that were emerging across HHS as well as at DOD and VA. ODPHP is particularly interested in learning about strategies that envision PHRs as public health-oriented preventive health tools.
The findings of the study are intended to be useful not only to our office but also to the agencies as they develop their own activities.
Just to be clear, the paper, or the study, was not intended to be an inventory of what Federal agencies are doing in PHRs; it is intended to identify points of consensus and disagreement as well as critically analyze the choke points, decision points, and opportunities that the agencies are going to face in the near term.
So with that, I'd like to turn it over to David for a preliminary report on the findings from the study.
DR. COHN: Okay. And, David, I do want to tell you that we are on the Internet at this point.
AGENDA ITEM: Presentation – DAVID LANSKY
MR. LANSKY: Good morning, everyone. Thank you, Simon. I'm glad to be with you again.
In the past, I've spoken with you about some of the broader research that we at Markle and Connecting for Health have done regarding personal health records and public interest in them.
And as Cynthia said, this time -- as part of the continuity of my own work with FACCT in the past and now with Markle -- to support the program here in looking at the various Federal activities regarding personal health records and try to distill from what we can look at what's going on today, what are the common and divergent activities, where are their implications for policy or for program design that we should all be sensitive to, and just essentially distill what's going on and then feed it back to people in positions to influence the programs here.
We are at a midpoint in this project, so I want to caution you that what I'll report on today is preliminary. We have a couple more months to distill what we've learned from our first round of interviews and discussions. And I would actually hope in the course of our discussion this morning that you'll provide us with some perspective and feedback that we can capture in the remainder of our work and the report.
In a nutshell, if I were to summarize what I think we've discovered so far, at least what I've discovered, is that the perception of the possible value in applications of PHRs from the very diverse Federal programs with an interest in health is expanding, not contracting or converging.
We have more good, creative opportunities to explore how to use a personal health record and the related systems in support of not only Federal programs but Federal interests. And I'll talk more about that.
Those ideas are expanding at the moment, and part of what we will probably suggest in our report is there needs to be some degree of at least not contraction but coordination in how the issues that are common to all these expansive ideas end up being mapped together.
And I think further, following on Cynthia's point, that the question of what are the appropriate government roles is probably at the heart of what we'll be addressing in the report.
We certainly don't know the answer to that question, but our sense already is there needs to be some focused discussion, and this may be one of the important forums for that discussion about – this is a new area; it provides new opportunities, perhaps new risks, and should be viewed very carefully as to where the government can be most appropriate and effectively involved.
Let me summarize what we've done so far and what we are observing so far.
The scope of the project is to review what we can of current activities and interest in personal health records and related services, identify what the policy implications may be from the current or projected activities, and then suggest at least a framework for considering what the appropriate Federal roles may be as this field evolves.
You see on the right a list of the agencies that we have spoken to one or more representatives from so far. I think we had 13 formal interviews up to this point.
I should mention that our team for this, working closely with Cynthia, has been Susan Kanaan, whom many of you know, helping us with both research and writing, and Josh Lemieux, who has been a FACCT employee, and myself. We've been doing the bulk of this work.
I won't directly cite or quote any particular reports from any of these agencies, but I'll try to give you a distillation of what we've heard so far.
Maybe it's self-evident, but the fact that all of
these agencies, of very large scope, have an active interest and planning activity around PHR is itself an important point.
And some of them are talking to each other, some are not; some are aware of other activities that overlap, some are not. There is not, to this point, a consolidated or coordinated effort to have these different Federal initiatives at least testing each other's ideas with each other for possible overlap or conflict.
In terms of why the Federal governmental programs are involved in personal health records at this point, certainly a central guidepost is the President's announcement earlier, last year, that over the next 10 years we would like to see a universal availability of a personal electronic health record and there's obviously great support for that from a number of people in Congress and elsewhere in the agencies.
It is perceived that the personal health record may be an important tool in achieving, as Cynthia just said, a number of goals of the major Federal health programs, including public health goals.
Among these goals are patient-centered care; greater consumer involvement in the health care system, as John said in his opening; improved chronic care management, which is of course a major initiative of CMS and others at the moment.
And I think what emerged from our interviews on this occasion has been a lot of the Federal agencies that have been information suppliers or publishers or disseminators see the personal health record as a new distribution vehicle for the enormous body of health knowledge that's available through Federal activity.
I think a modest distinction I want to raise and stay with this morning: To some degree, PHRs are seen as a way to extend current Federal programs, simply a new distribution technology for an existing commitment or strategy that a Federal agency may have.
Secondly, it is a new platform, and therefore even a new strategy, to achieve goals that maybe haven't been fully articulated or have been articulated only in a very strategic sense but have not yet been put into programmatic terms.
And that's probably where the more innovative and edgier thinking is going on as a way of extending strategic policy directions into the program world. And I'll give some examples of those.
Another reason for the Federal role in PHRs is the broad understanding that the Federal government and its programs will be leaders in American health care willy-nilly and it is very important that the positioning that the Federal government takes with the NHII broadly and with the personal health dimension specifically will be a defining channel in whatever happens next.
Perception that unlike many other entities which have particular interest in the health care system, the Federal government has the most distinctively public interest responsibility, and to the extent the PHR will touch upon the public interest and the public welfare, then the Federal government needs to speak to the deployment of PHRs with some consciousness around that interest.
While there may be a very successful private market in offering products and services that enable PHR functions, they may not ultimately address a larger public interest, and therefore there has to be some Federal attention to this.
And finally, I think as many of you have worked very hard on, the question of interoperability and connectivity in the health care system is considered to be an underpinning of the viability of PHRs. PHRs are not widely perceived to be a very powerful medium unless and until there is also connected EHR information environment. So the Federal commitment to Dr. Brailer's office and elsewhere to the interoperable health information network is considered a prerequisite to aggressive deployment to PHRs.
Those are all reasons for the Federal agencies to be involved.
At the same time, each of these agencies has its own purpose, and multiple purposes, clearly, and it's just worth reminding ourselves that across the agencies that we collectively work with here in the government, there are many roles, which implies different ways of involving with PHRs.
Many of the Federal agencies, of course, are providers. CMS in particular and others are important payers, extremely important payers. There are regulatory functions, research and dissemination functions, public education and outreach functions including the prevention area that Cynthia mentioned, policy-making and policy-setting activities which facilitate larger national initiatives. And we also don't forget the nation's largest employer.
So, each of the agencies which touch upon each of these roles seems to have a finger in the PHR world.
And we've talked in this setting before about the question of what is a PHR, and I'll just remind you of some of the categorical issues here. First, that there is not a uniform understanding or definition of it. And in our interviews with the Federal agencies for this project, we did not encounter a uniform understanding of what PHR is, or should be, which I think several of the people we talked to thought was a strength, that this was a very important time to allow there to be pluralistic activity, and if anything, a too-assertive Federal statement that "this is a PHR and this is not" would be a premature limitation on the development of the field.
And they actually were, I think, humble and cautious in saying, while we think we could be very aggressive in this area, we should not be, because we don't want to preempt other activities either of other agencies or of the private sector.
The Connecting for Health project that Markle and Robert Wood Johnson have supported has identified some of the attributes of PHRS without saying they're necessarily part of a definition: That the patient has control and understands what's in their personal health record, they have a broad ability to access the contents of that record, it addresses criteria of privacy and security, and there's a transparency to the construction and access of that record.
We talked in the earlier report about some other attributes of the PHR, and here we note for your benefit that we realize these are illusive, or not widely available, attributes of personal health records. That they be longitudinal, or lifelong, is a very difficult thing to achieve in our very fragmentary and pluralistic system. That it contain information from all health care providers is difficult to achieve. And that information exchange, given the limitations of our national platform, be easy is difficult to achieve today.
And finally I want to mention the reality, and I think the Federal agencies we talked to understood the reality, that there are many flavors of implementation. Regardless of what attributes or definition you ascribe to, today, in reality, the way these things are going to be offered to the public vary very widely.
The medium, whether it's on the Web, whether it's on a CD, whether it's on paper, whether it's on a USB stick, the media of distribution and support vary widely. The contents, the data contents, vary widely, and the functions vary widely.
So, with lack of uniformity on any of these foundational elements, we see a great variety of manifestations of PHR across the Federal agencies.
As I mentioned earlier, there are several different categories of ways the Federal programs are considering being involved with PHR. One is to, as I said earlier, extend and enhance current "business as usual." It's a new platform to deploy something an agency is already interested in doing.
Secondly, it may enable new agency roles and activities, and the agency may go into new areas and look at the wider health care environment.
In this case, there may be a possibility for good or ill of the Federal government playing a role that it has not played before which may be perceived as stepping on another entity's role in the private sector or in other parts of the public sector.
And then, thirdly, a number of people spoke to us about their vision, and, as John suggested in his opening comment, that the PHR is an entry tool; it's a wedge into fundamentally transforming how health care is organized.
And here, of course, is the most complex, uncertain and risky area of activity as the PHR is considered to be a new means of health delivery and what Federal role might be engaged there becomes a concern.
Let me just tick off some of the things we heard that the agencies have mentioned to us that they are now doing or anticipate doing.
I just mentioned the visioning and strategic leadership category. People perceive the PHR as a way to improve quality, safety and efficiency at the foundational level to fundamentally change the opportunity for patients to get high quality and safer care.
It's a platform for envisioning a new health care and public health system for these goals.
People have very bold visions for what this technology can bring about, and an important and probably very optimistic part of this work has been to hear how many people and how many agencies see this as the first opportunity really to completely capture the relationship with the patient and give them more control over their health care experience, similarly providing direction for modernizing and redesigning the delivery system in health care, and finally, and very importantly for many of the Federal agencies, providing a platform for bio-surveillance, drug event monitoring, adverse event reporting, really creating connectivity to the public around health information in a two-way exchange.
The second category we heard a lot of almost, I could say, unanimous agreement about was the support for standards-based approaches to health informatics broadly and health data, capturing data exchange.
I think everyone we talked to agrees that there has to be increased standardization in the information infrastructure and the Federal agencies are critical to supporting that process. Some of the distinctively Federal roles are:
Providing some integrating tools and functions that the private sector won't necessarily do in individual segments.
Giving attention to some areas that have not yet gotten a lot of intention, and in particular the question of patient-supplied data, the patient reports of health status, symptoms, medication adherence and so on, which don't have standards in the clinical-medical arena, but if we begin to capture this data from patients, there will need to be such standards, and that may be an opportunity for Federal leadership.
Cutting across the various standard-setting bodies is a Federal role.
There was a perception the work of CHI that has been important, continues to be important, as a unifying Federal statement about standards.
And in the same fashion, creating a tipping point: The Federal action where it's consolidated and clear does indicate to the entire health care marketplace a direction to proceed.
A third category is regulation on privacy and standards, which was essentially to support and extend the HIPAA privacy rules and some attention to both FDA and CMS around agency regulatory functions and how the PHR might affect those.
I say parenthetically it didn't come up in these interviews, but that's a particularly important consideration at the state level and it may be worth some additional discussion about the state-federal interplay on the privacy and data regulatory functions.
The fourth category of commentary we heard was in facilitating the evolution of PHRs themselves, of the product or service we think of as a PHR.
Several agencies used a phrase like "showing the way" – that is, the very significance and scale of the Federal programs, by taking action in the personal health record space, especially in terms of a large-scale deployment, will influence what else happens in the country and what industry does.
Similarly, already through the VA and other programs, the ability to do early deployment and collect data on early utilization of PHRs and the support of research around that will continue to be an important role. The opportunity, because many providers have contact with Federal programs, to reach out to providers about how best to participate in PHRs was suggested to us.
And then there's a number of Federal agencies interested in what you could broadly think of as social marketing, or public education, around how you as a consumer, a beneficiary, can take more advantage of your health information, using these tools.
And finally, and maybe most obviously and has actually probably moved the fastest, has been to provide direct services to covered people, whether they're employees, military families, veterans around the personal health record as part of their health care package. And that includes both developing personal health record product and tools and potentially purchasing them through the private marketplace.
A second component of that direct service element is to be a data supplier to a private sector PHR environment. So you could imagine the Federal data resources being made available through a standard interface to those who offer PHRs to the public as a way of populating the PHR.
And then, thirdly, and we heard a great deal about this, was the populating of other Federal content into the PHR through a variety of means. And there are many sources for that.
At this preliminary point in our digesting of all this information and perspective that we've had, and as Cynthia said, we haven't attempted to do an inventory or to look closely at specific products and programs – this is a very modest project – but essentially we've distilled two categories of issues that deserve some attention, we think.
One is in a category which is not particular to the Federal government or Federal programs -- it's just this is the state of PHRs today and some of the issues that everyone, including the Federal agencies, need to think about – the first is privacy and information control, including how the public perceives privacy and information control, independent of what actual controls and security considerations are in place.
The second category is security, and again, public perception about security of health information in this environment.
The third category are legal issues.
The fourth are cost – who pays for, who supports, the deployment of PHRs.
And finally is interoperability both among PHRs – if I go from one health organization that provides me with a tool to a new health organization, are those tools going to be interoperable? And in turn, is my PHR interoperable with the health care-installed environment?
The second category of issues, which you see depth on, is those that are distinct to the Federal agencies, where we heard Federal officials tell us, here are things that are on our minds and that we need to address or have help addressing.
So the first one is: How do the anticipated roles in and uses of personal health records relate to the larger health objectives of the Federal government broadly, of HHS as one important agency, and of the individual departments and agencies within HHS?
I think my sense – this is an informal observation – is that we have people, at the ground level in some cases, following and developing ideas around personal health records and now asking themselves: How are these compatible with, how do these best extend the larger, strategic imperative of my agency? So there has to be a knitting together of practical program issues and strategic issues.
Secondly, under financial costs, depending on what role these different agencies might choose to play in support of personal health records, what costs will they face and who will pay those costs and how will those costs be absorbed? This again is true of the larger question, but the very specific question for the Federal programs.
A third question, which is again a much broader issue which has a great deal of attention right now – as Simon said in the opening – is how will the Federal government promote interoperability broadly, and in turn, the PHR piece of interoperability?
The fourth issue that will need consideration, and this probably surfaces broadly for discussion across the agencies, is whether there needs to be some consistent or even standardized approach to a personal health record across all of the Federal activities.
So, if you will, if DOD takes a particular approach to PHR and VA took a different approach and Medicare a third approach, for a person who is going to pass across all three of those programs in the space of a few years, is that a problem or not, or to what degree should there be uniformity – to what level of complexity should there be uniformity across, let's say, those three agencies in the way they implement personal health record solutions?
And this is a question both at a broad policy level for the nation and a more pragmatic policy level for the Federal agencies themselves.
A footnote, an important footnote, a corollary to that question, is: Should all, or any, government agency define what a PHR is?
If any one major Federal agency were to say, here are the requirements that we set for a PHR, whether it's for reimbursement or for interfacing or for data access, as soon as a major Federal agency has done that, there will be a ripple effect across the pond of all the other Federal agencies and the private sector.
At the moment, some Federal agencies have contemplated setting such requirements. And again, as I said earlier, many of them have looked across the abyss and said, wait a minute; we'd better not go there. But it could happen, and there needs to be some consideration to whether or not that's a good idea.
If they were to do that, if any important agency or collection of agencies were to set a Federal definition or requirements for a PHR, what should be the criteria that that agency should use in doing so? What are the categories of criteria they should use?
And this, of course, goes back to my first slide about what is a PHR and are we ready yet for anybody to say this is what it is for the purposes of reimbursement, data sharing, qualification for some programmatic opportunity.
The fifth category are the privacy concerns and issues, in particular the area where the Federal agencies are directly offering a PHR and either acquiring or permitting a patient to acquire personal health information and store it and transmit it with some amount of Federal imprimatur or Federal funding or perhaps Federal certification.
Back to the last point: What are the specific privacy concerns that arise, again, either in terms of actual legal risk or perception on the part of the public of the Federal agencies having additional access to or support of PHI in this context?
Some agencies, in the case of direct service providers like the VA, and maybe less controversial but in the case of an intermediary role where a Federal agency may be inching its way toward being a repository of personal health information by the way it supports a personal health record, does that create a new issue either of legal or perception risk for the government?
Number six is the flip side of number four: How should the government position itself vis-à-vis the private sector? In particular, where we have an emerging private sector industry – and you've heard testimony from some of these vendors in the last hearings – we have an emerging industry of innovators and developers within the health care system and the technology industry who will hopefully continue to be creative and innovative in what they develop.
What should the government posture be toward these innovators? Is it supportive? Is it observant? Are you providing data opportunities in partnerships with these innovators? Are you contracting with them as vendors to Federal programs, and if so, using what criteria or requirements, and if so, to what degree does that action itself limit innovation? How do you construct a relationship with the emerging PHR environment which both stimulates innovation and advances the Federal agenda?
Given the three largest players potentially here, the VA, Department of Defense and CMS, and they are perhaps the most likely to be in the vendor space soonest and with the greatest potential influence, should there be some dialogue fairly soon to at least contemplate these implications of their positioning in this arena?
Number seven on here has to do with regulation and certification of the PHR. Many of the interviews we've had with Federal agencies and elsewhere have highlighted some of the risks of PHR activities that exist.
A totally unfettered environment where anybody can offer any PHR to anyone may create some risks to patients and their well-being and their privacy of information. Should the Federal government have any actions to identify those risks and consider regulatory or legal protections? By what process would the government come to a conclusion about that task, whether or not to play any role in that arena? Or is it appropriate at this stage to wait and see what emerges through private sector and Federal activity in the PHR space?
And number eight, we have a laundry list of other questions that have emerged in our discussions:
Do the Federal agencies emerging in this arena have the capacity in terms of technology, policy awareness, consumer awareness and so on to be effective in offering PHR services?
Is their track record credible with their own constituency or with colleagues?
Is there consistency within and across agencies about the way they are addressing these questions?
We've heard of some intra-agency where one agency has multiple PHR activities that are not coordinated with each other, and of course there are inter-agency differences.
And then, how will the public understand Federal action in this arena, and will they trust it? Similarly, how will the private health care provider networks and vendor industry understand Federal activity in this arena?
And I guess that raises the larger question of: What's the communications component to any Federal activity in the PHR space?
In terms of what we heard from our interviews that we would consider a consensus, first of all we heard very high level across all those many agencies I listed of interest in PHR. This is an important emerging goal and question for many agencies and very optimistically, in a time when a lot of us are, I think, frustrated with many other challenges in health care, people do perceive this as a fresh and positive opportunity, and very valuable, and should be captured and encouraged.
At the same time, people are fairly sophisticated now about the challenges of IT adoption and certainly the challenges of beneficiary and consumer engagement so that I don't think there's a naïve optimism but there is a serious optimism that can be supported.
The two roles I've mentioned several times are the ones that keep surfacing. The Federal government needs to be a leader in standards-based approaches including as it pertains to the PHR and it has to both encourage innovation in this learning period.
So the delicacy of both being a standard-setter but not creating barriers to innovation is the challenging line we heard a lot of people talk about and be very aware of as a difficult balancing act to solve at this point.
Similarly, on the next point, encouragement that the Federal agencies must balance what they want to accomplish, why are they using a PHR, for what particular purpose, and what metrics would they assign to their ability to achieve this purpose, and allowing there to be experimentation and innovation in the way these purposes are achieved.
Too heavy a hand will probably frustrate innovation and learning and too light of a hand may create chaos, and that's the balancing act a lot of agencies are talking about.
The question of what do we mean by Federal action in this arena is not resolved at all. It could mean an integrated, coordinated government activity or it could mean a lot of things being done with Federal funding and no particular coordination.
I think there's agreement, we heard, that there should be some degree of high-level coordination and conversation about what the goals are and how the different activities are moving toward achieving them and that that dialogue should include entities outside of government which are also very active in this arena.
Now, as I said, we have a couple more months of discussion internally in our project before we make recommendations to the Department, and I would hope today we'll have some conversation with you about where we are at this point.
But here's a preliminary sense, very preliminary, of what we see to be some of the issues that should be raised for further discussion:
There should be some kind of a vision about the purpose of personal health records and the associated functions in achieving Federal health objectives. Simply saying everyone should have one is probably not enough clarity to guide the more practical decisions, the policy decisions, that will have to get made as individual agencies do their part toward achieving that larger goal.
I don't think we want to over-stress consensus or alignment, but we do think there needs to be more awareness of activities across the government and some degree of coordination.
Some of the key issues that need to be considered are:
The Federal access to personal clinical data – what should it be, what's appropriate? And what responsibility does the Federal government have to access and use personal health information in support of Federal objectives?
Cynthia mentioned in the opening their Department's interest in preventative measures. A number of agencies have been interested in increasing prevention and health maintenance activities.
There is a potential slippery slope between a very broad educational message targeting that message to people about whom we have certain personal health information which puts them at risk for that information and then getting into a centrally disease management relationship with those people where more and more clinical information is exchanged with the government. Where on that slope is the appropriate place for the government to be?
What is the Federal role vis-à-vis the private sector? Do the Federal agencies facilitate a successful private market and personal health record services and products or does it displace that market?
And many of you have heard discussion of the opportunity of using some of the VA products and services as an open source, or public domain, tool. What does that do? If that were to happen, what does that do to the private market?
This is more of a strategic policy question: Are the Federal agencies interested in pushing more ownership and control of health information to the patient versus depending upon the provider networks that are currently contracted with or owned by the Federal government to be the intermediary of personal health information?
In a sense, how radical a vision of patient empowerment do the Federal agencies want to undertake? And what does that do to the relationships you have with other Federal contractors such as Medicare providers?
Thirdly, to what degree do all Federal agencies plan to make use of, support or refer to a single model of what a PHR is versus developing their own model of what a PHR is?
And if there's to be any coordination across that definition of what a PHR is, who is responsible for coordinating or enforcing that model?
Next, what are the Federal "policies" regarding personal health records?
Is there a body of Federal policy regarding personal health records that all agencies would conform to, including the patient's right to access, control, audit, authorize usage of their personal health records?
Should these be uniform across all Federal programs or should they be uniform nationally?
Are these rights afforded to everyone, in which case the digital divide issues in shorthand will surface.
Is there a risk of creating favorable health service access by virtue of a PHR availability to some groups of people and less so to others, which could be aggravated by issues of language, computer access, geography and so on?
So, hopefully that gives you kind of a window into what we've heard from the Federal programs we've talked to and what are emerging as some of the challenges that are facing and that the government as a whole will face, some of which spill over into private sector activities and some are really more program specific.
But I think we'll stop there and be eager for comments and discussion.
DR. COHN: David and Cynthia, first of all, thank you for some very interesting testimony and information. Let's take questions. Jeff, you first, then John Paul, and then I have a couple of questions and comments. Jeff?
Questions, Answers and Comments
MR. BLAIR: David, I'm really impressed. I think that the work that you're doing in the report is going to have absolutely tremendous value and I really was impressed and felt very comfortable with the way you've gone about doing it, even the initial issues where you wound up listing privacy and security as the top two issues and then you got down to the more technical issues after that in terms of interoperability and other issues. So, profound compliments.
Here's the only areas where I think I could make some suggestions.
One is that – and I'm going back to the '90-'91 time frame when the Institute of Medicine did the 18-month study defining the vision of computer-based patient records – at that time, we found that there was ambiguity, and one of the ways we reconciled that was to make a distinction between the record and the system.
And a lot of times when I was hearing the role or "requirements" of the Federal government, sometimes it was with respect to the system and not the record.
And I think that if we could begin to make that distinction, it'll be helpful because there's people who are concerned with the privacy of the content of the record and it, I think, will help to clarify that in many cases Federal guidance and support and service is to facilitate and enable this.
In other cases, it would make it clear that the Federal agencies might be asking for individual consent to sharing some of their information for national health care purposes.
And that kind of gets to my other suggestion. When you gave the presentation, it's clear you have a heightened sensitivity to the fact that for the public to trust and accept and adopt these, there's got to be a high level of trust. So it's not that you don't recognize that.
My thought, and I have to confess that when I was listening to this, I kept trying to think in terms of the folks that are sensitive about this issue, as I was listening to this, and before I came here, I had one of my assistants who I use sometimes as a bellwether and I said, "Well, the patient will have control of the health record." And the first thing that person said was, "Do you mean complete control?" Now, this is a person who is not involved with health care intimately. But that kind of was a little trigger to me, that they would zero on that so quickly.
Now, you've got that on your agenda. One of the things that I think might help as you begin to characterize this, I think the phrase you had was "Federal health requirements," "Federal objectives," or something like that, "Federal health care objectives?" Is that correct?
MR. LANSKY: One of the groupings of the policy objectives or of the specifications for a PHR?
MR. BLAIR: Either way. What it was was a recognition that while the principal goal of this may be for the patient to be able to use this as a tool to improve their health care.
One of the other objectives that is clear from many of the Federal agencies is they hope to be able to have access to this information, which is for a good purpose.
But if we characterize it in terms of the Federal government wants access, and I think that the privacy advocates would see that very readily, I think we have to be very, very candid and maybe go beyond phrasing it in terms of Federal requirements, Federal objectives, Federal desires or needs.
The Federal government serves the population as a whole. So actually patients and individuals are going to get a benefit from having some limited, controlled Federal access to the data. And I think if it was put in terms of the global or universal benefit as well as the individual benefit that it could defuse a fear that the public at large may have about this.
For example, if we were to wind up indicating that not only is this to help an individual with their ability to better manage chronic diseases and their own wellness but it also would have, with their assent, with their consent, the ability to feed in and be able to respond to national health care emergencies or bio-terrorism or environmental issues and phrase it in that way instead of just saying "federal objectives" – but do you see what I'm saying?
MR. LANSKY: Absolutely.
MR. BLAIR: Okay? So that people don't think it's just the government, which is "them," instead of the ultimate goal still being the population at large.
And my last observation on that is that personal health records and personal health record systems offer the potential to have dramatic improvements to our health care delivery system. But to do so, I think many of us are envisioning they're going to have additional information besides those that we look at for an electronic health record.
Potentially, they would wind up having information about environmental situations that the patient is in, and those things are the types of things that help us with these environmental problems and community problems and national health emergencies and contagious diseases -- information like where they work and geographically where they're located, and what other stressors, environmental stressors, they might be exposed to.
So, since that is of great value for these other things, it also is going to be the type of things that folks are going to be even more concerned about in terms of privacy.
So I think we have to focus on that very directly maybe in how you characterize the report or just keep it in mind so people don't feel as if there's a separate agenda here.
DR. COHN: Okay, Jeff, thank you.
MR. LANSKY: I think everything Jeff said is extremely valuable to us and it's important and some of the distinctions you raised at the beginning, Jeff, on the record versus system, we've heard that, and I think I am now seeing partly it's a nomenclature problem but it's raising a larger policy problem, and I think we collectively need to do some thinking about.
Frankly, the phrase "personal health record" has become a little bit of a problem because it does imply a document. And instead, what we're seeing is a series of functions which utilize a widely dispersed set of personal health information and the system, in other words, is where the action seems to be, and we're not even clear that there will be a record sitting anywhere in the traditional sense, and the implications of that, as you suggest, are extremely important.
And I agree with your other comments as well. I appreciate it.
DR. COHN: Yes, thank you. John Paul?
MR. HOUSTON: Probably going to dovetail a lot of what Jeff has already said, but I think you made a point that there really is no uniform definition or understanding of a PHR. And really only one point in your presentation did you really talk about or even mention a PHR. And I guess this is the thing that I still have great problem with, is what is the differentiation between the two?
And you mentioned interoperability and connectivity between the two, and I'm struggling. I mean, it's more of a common question I struggle with is where does one begin, where does one end? I think different people have different ideas; not just people but organizations have different needs as to what a PHR and EHR are.
So I guess I'm just struggling with where is that intersection or where is the overlap and how do we try to mediate that efficiently and effectively, because I think when we listen to Jeff's concerns and read through this presentation, I think it still seems that's sort of like one of the core issues in my mind, and once you understand that, then you can start to sort of answer the other questions he sort of raised and try to address some of the issues that you've raised in the presentation.
MR. LANSKY: I think short of someone prescribing an answer to that, this is like transition from gas to liquid. Then the metaphor we'd use in the past, tethered and untethered.
One of the comments we heard from some of the interviews here with the Federal folks was even if it's an untethered PHR, ideally it would be tetherable and that there should be design considerations so that this connectivity you suggested is enabled, that a person doesn't get stranded with an untethered.
Having invested a lot of effort in money or whatever they do into created a personal health record which then cuts them off from the health care delivery systems information resources would be unfortunate.
So this is kind of a one specific example of a challenge to the Federal activities, if there were to be agreement that that were true that there would not be Federal support for fully untethered PHRs that could not be tethered back to the system, assuming conformity to standards and so on. Right now, as you say, there's no clarity about that yet.
But the discussion has been surfaced in our interviews whether or not to support the – when you have a situation like the VA or the Kaiser example where you essentially have a consumer portal, which is very tethered, and has at this point relatively little opportunity for consumers to add information of the kind Jeff just talked about.
And at the other extreme, you have a completely independent, untethered product which may have great value to a patient but doesn't talk to their doctor or their hospital at all. So I think there needs to be an answer to your question, and I don't know what it is.
MR. HOUSTON: It's almost like there's a third category of the untethered; I'm going to call it the "sponsored health record." It's not an EHR, it's not a PHR; it sort of something that somebody sponsors for which there's additional access or rights or interoperability to or between.
And I think that maybe that's the issue – there really is another category or two of health records. I guess they all sort of together sort of make a continuum of health records. And again, tethered, untethered, and I think some of it has to do with public perception of rights and control.
DR. COHN: Yes, I think David's agreeing with you. Mike, we'll bring you on the list here; you're not up yet. We've got a long list.
My turn – which follows up along, John Paul, what you're sort of commenting on. And without trying to answer the question, I think one would observe and I think both Jeff and John Paul have sort of said the same thing, which is what you observed, that there's tremendous ambiguity in this whole concept.
I think where we talked about the personal health dimension, this was a vague enough, high enough level concept that it included sort of anything you wanted. But just as we moved from the NHII to the NHIM, you suddenly move down a level of granularity.
And I would suggest that not that we need to rigorously define what is and what isn't, but more almost like there needs to be an agreed to taxonomy of what these things are and how they all fit together.
And I don't know that it's just as simple as a continuum between tethered and untethered, which is not a very satisfying set of concepts. I somehow think that using consultants and whatever, we should have something a little more sophisticated that.
MR. HOUSTON: I'm a very simple thinking person, so –
DR. COHN: Yes, but I think that there's more to it. I think rather than describing this as a world where we're moving from pre-electric to electricity, I think we're really dealing almost the automobile market where there's probably a variety of different products out there and a variety of different approaches.
The other piece I'm sort of struggling with is this issue of: How does one evaluate direction? And it's really that issue of metrics. And it seems to me that there may be more agreement both in the Federal government and in the private sector about metrics, about what you want to get out of all of this at the end.
And I would observe that, for example, for provider health records, electronic health records, I think we're all aware that there's many ways to implement and many things that one could design, some of which are provide quality, patient safety and cost effectiveness, some of which probably just add more money and more cost and maybe even decrease quality in the health care system.
And certainly, as one looks at all of these things, one needs to sort of think about, I mean, are those the metrics we're going to use for personal health records? What is it that Federal programs might – indeed, there's a research agenda or some level of disagreement; how are we going to converge as we go along, and what metrics might we use?
And once again, I'm just sort of thinking of you as writing a report, things that I'd like to see in it. So that's just my comments.
Steve, I think you're next.
MR. STEINDEL: Thank you. David, it's always hard to ask questions or make comments after one of your talks because, as Jeff indicated, and others I'm sure as well, it's very interesting, complete and thoughtful.
I do have two sets of comments, and I think they're more of comments than questions. So the first I'm going to phrase as a question. And you had CMS on there as one of the agencies that you spoke to, and I think one of the things that you should address in the report is: What is the role of the payer in a personal health records, whatever form it takes?
And this gets to some of the comments that people were making concerning privacy, confidentiality of information. You know, how does a payer go with this information? What are they using it for? What reasons are they looking at it? And I think that should be explored in the report.
As Jeff indicated, it would give people a better sense of where this is all going. And like I said, I phrased it in terms of a question because I think you need more time to figure out an answer to it.
The second is in regard to the sets of discussions that John Paul and Simon just had, and I wrote that down earlier, and as we spoke, I changed my title, because the way I've been looking at PHRs over the last few years is I said I've now come to the mind where there's four types of PHRs, but I'm changing that – I'm saying there's four roles for PHRs, because I think "type" is wrong because, as we've seen, it really is a continuum.
And these things that we've been referring to as PHRs and with nomenclature that's been very vague and hard for us to get our hands on have morphed roles, overlapped roles, tethered versus untethered versus tetherable – that was an interesting phrase – shows how these morph and change and how we need to discuss that.
And what I defined as my four roles, and the first one I talked to roughly is the amazon.com model, and this is where you order something over your PHR, and we're going to hear about some of that today, you know, where people use this as a portal to refill prescriptions and schedule appointments et cetera, and you can get, in some of these cases, an inventory of what you've done through this portal.
And the second is a view, and with limited comment type approach, you know, which we've referred to as the tethered PHR, I think, in some cases.
And the other is what I've just referred to, for lack of a better term, is the full bore PHR, you know, which has everything. It's your health record forever and allows tethering and untethering and is what the President generally envisions when he talks about the personal health record and carrying it from place to place.
And then the fourth tool, or role, of a PHR which was emerging very clearly in your discussions is as a dissemination tool.
And you did a very nice job of describing what people have talked about in terms of standards and privacy, confidentiality and security concerns in these various roles. But in the last couple of months, I've come across – in part, this is with my work with the HL7, the HR committee – but I've come across two additional aspects that I think we need to start talking about.
And the first is the accuracy of the data that's contained in the personal health record. And people are questioning. We heard very early in NCVHS hearings from physicians who said they would accept a paper record from somebody but they would not accept it electronically because of its accuracy.
And this has actually continued. We've heard questions about accuracy of information and how do you judge that. And I think that's something we have to start discussing because if we're going to exchange this information, we have to have some definitions on accuracy.
And the second has to do with the timeliness and time sensitivity of the information. If we're talking about a long-term PHR or even a tethered PHR, is that information still current? Is it timely?
And I think we need to start discussions in that area, because unless we fulfill those two areas, people who are looking at a PHR at a point that's not today may not be able to understand the data that's in it.
So those are just really two comments; you can react if you'd like, but Simon, thank you.
DR. COHN: Do you have any comment.
MR. LANSKY: It's good – thank you.
DR. COHN: Okay. I'll just let everybody know what the order is – it's Gene and then Mary Jo and Mike; it's Maurice, Linda and then I think John Lumpkin has a question even though he hasn't spoken up on the phone. Is that okay? Have I missed anyone? Okay. Gene.
MR. STEUERLE: Let me add my compliments to those of others here. I think what you're doing has really been very, very helpful in coordination in the work among the agencies. It's actually crucial about what happens here.
I have one minor comment which is just going to reinforce something Jeff said, and then I want to get to a little more of a major issue.
The minor one is I would, if I were you – and maybe it's a comment to us in general, not just you – if I talk about something like the Federal role, I really would talk about really the public interest in this issue and how the Federal government can enhance it, rather than thinking about it as something inherent in the government itself. The government is basically an intermediary, presumably serving the public. That's fairly minor.
My major issue has to do with the question whether within the agencies themselves there is someone ultimately bears responsibility for making action happen. And I say this probably because I worked in government for 15 year; maybe it's my experience of working with IRS for many years.
But, you know, bureaucracies, I think, are notorious for committeeizing everything, and we are a committee here, because it in some ways gives nobody full responsibility for something happening.
We've attempted, the Secretary's attempted, to get around this a little bit with the appointment of David Brailer, but even he has really essentially no authority other than just if I can help for the most part other than to beg in most cases – there's some authority, but not a lot.
And so the question for me is whether within the agency there is some place at which the responsibility resides, not just responsibility for what you list under 1 – under your category 1 you have these issues of attention – but responsibility for the cost of inaction.
The problem that I've seen over the last couple years in examining this issue is this is an area where in part we're going to learn by doing, and by doing, we're going to make mistakes.
And so for bureaucracy, there is always the fear of making that mistake and getting labeled as a mistake, and so it's easy in a bureaucracy to defer and delay and put off to other people a decision.
And what you don't have in here, I think because it's presumed, is what the cost of inaction is. You know: What is the cost to me just of not having a personal health record, whatever form, where I could at least find out whether I'm getting duplicate shots, whatever very minor risk that may have, or whatever the cost to me is of not being able to check up on whether the doctor is checking my white blood cell count or whatever else, whatever problem I have?
It seems to me there are costs of inaction as well, and it's not clear from here, A, how that relates to the cost of things like if we violate privacy or something else, and then, B, who within each of these agencies has responsibility ultimately for making the decision not just to move, which could bear the cost of making the mistake, but the responsibility if there is not action, there's not movement, and whether inherent in the structure is someone actually in VA or any of these other agencies. It'd just be very interesting to know whether someone really bears – where that responsibility lies.
I don't fully know how to get at it; easier said than done. But I would love to at least have some comment within your report on how that responsibility plays out. Or in some other report, maybe.
MR. LANSKY: Well, I think it's something we should add to the report. We haven't formally discussed it, and I'm cataloguing in my own mind what I think the answer is to that question, and it's very diverse.
In fact, one of the interviews we did conduct, someone said so far this field is about personal leadership, not about structural authority.
And so in agencies where there's a person who has a strong feeling about how to make this happen, something might be happening, so that in the early phases, that ad hoc mechanism might be understandable but it might not address the other issues you raised.
DR. COHN: Thank you. Mary Jo?
MS. DEERING: Well, I'm going to be different and congratulate Cynthia, because I think we are deeply indebted to her for her vision in putting together this project and to see exactly what needed to be done, and I want to thank Penny for supporting it and put in a plug for old home, because ODPHP has been absolutely steadfast in its commitment to personal applications for health management and health improvement and this is just the latest in a series of really terrific contributions to I think the Federal government broadly and to the field.
Had a couple of quick comments and then a couple of requests to you both for the report in general and for the NCVHS workgroups.
In envisioning this tethered versus untethered, I want to just remind us all of the rising tide of what is called euphemistically "consumer-driven health care," which is just the cost shifting on to the consumer, and as one who in the recent open season jumped ship into one of these high-risk, high-deductible, consumer-driven health plans to try and test drive it for myself, and it doesn't have a PHR that goes along with it to help me manage it, I'm ticked!
[Laughter.]
MS. DEERING: A nice word to use.
And so you are going to have a rising audience of people who need something to actually manage this and who will need the functionality of information exchange and information management regardless of which Administration is in power.
Second, I wanted to mention that NCI is looking at a couple of areas where we would hope to get some interest in collaboration from others and they're both around the area of standards.
We are very interested in standardizing the patient interface both for data entry – not only data standards around patient-entered data but issues about accuracy that have been raised. We're actually doing some tests to judge the accuracy of patient-entered data by comparing it to some records.
But also we're interested in an areas that I know that Cynthia has always been interested in, which is not the data standards but the presentation standards.
And I know, David, that you were a strong voice in saying if the Federal government did nothing else but help lead us toward some kind of accepted approach to the interface and to understanding how real people, real patients, would really want to interact with it, that that would be a contribution. And NCI does want to support some research in that area.
I wanted to point out that the HL7 personal health record working group is finally going to get underway this month, and so there will be work begun to evolve in that field.
My requests to you are, first, with regard to this issue of privacy and public interest, Mark Rothstein, who chairs the Subcommittee on Privacy and Confidentiality, is holding some hearings to look exactly at these issues of privacy under the NHIN and with patient "control" of their record.
And so to the extent that you are – I don't see Kathleen Fyffe here who does triple duty and she staffs him on that – but to the extent that even in the next few days you could tease out some of the types of questions around patient control that you see emerging and feed them back to us, we'd be happy to share them with her because I know that they're soliciting questions as we talk for those hearings.
And then the last thing is a request for something that you might want to pay attention in your report and it does have to do with how much should the government be dictating this, that or the other. And it does seem to me as – you know, again, ODPHP was the very first to come out with a government Federal consumer health portal.
And now there's lots of them all over the place and they almost represent the same problem that they were created to solve. And I think that the same could happen with PHRs.
And so you could probably help by saying: Are there a few key strategic areas where, if nothing else, unified action is absolutely essential? Data standards – you know: What should the patient data entry be? I mean, I'm just hypothesizing. What should be the requirements for patient control?
If you could categorize even with whatever guard or specific nature you could indicate where you think at a minimum, if the government did nothing more, it not only should but absolutely must do that consistently.
And I guess I'm thinking more in terms of its own activities, like CMS doing a PHR, because I can actually, quite surprisingly, foresee the time when Federal agencies are going to be saying, hey, this is such a great thing; we want one, we want to offer it to our audiences, just like we now have a website.
And so I think if you could tell us what at a minimum we need to do, absolutely unified, would be helpful.
DR. COHN: Thank you. Mike Fitzmaurice?
DR. FITZMAURICE: David, I liked your model, the way you approached it. As you were going through it, I found myself thinking this could apply to all of HIT, this could apply to other areas than health information technology – the way you look for issues, the way you look among constituents, and the way you look for the role of the government. So I applaud the framework.
And I have just a couple of suggestions, or maybe comments.
One of them you talked about in one of the slides, providing integrating tools and functions. It would help us to know what are examples of these things that the private sector is not picking up that the government has as its duty or role to supply. A couple of examples would help there.
Secondly, what I find missing from the role of the government is the notion of research, evaluation, providing information for personal health record investors about the business case and the consumer case for adopting PHRs.
And then thirdly, I guess Cynthia covered this one; she said, well, this is not a do-everything study. I find myself wanting to know where is PHR activity taking place – VA, CMS, DOD? Where is the PHR used? Where is it being supported? Where is research and evaluation on PHR being done?
And then you'll probably make recommendations at the end of something like: Where should leadership reside in this area?
I'd like to see off site a list of criteria by which you go about making that recommendation, of being explicit about them – here's where it already is, so we think it ought to be expanded; here's where expertise is and we think you ought to get resources. How do you decide where leadership should reside?
Maybe, here's the top level, and it ought to be at the top level because coordination is necessary. Those are some examples.
Part of high-level leadership, and maybe one of the most important parts, is determining the amount of investment the Federal government is willing to make, it's investment of money, it's investment of time and people. Managers hate to send their staff to some meetings, to committees, to things where they don't see that it's going to please their boss, and the ultimate boss, of course, is the President and Congress and the people.
Jeff mentioned about the public being concerned about the Federal government glomming up patient care data, making a database of it, perhaps.
I see this PHR arena not as requiring more patient information in the hands of the government; the government already has information that might populate PHRs in part, with diagnoses, procedures, and over time, where has it been paid for over time? And many private health plans have that as well as DOD, VA and CMS.
I think most of us can support the patient getting access to this data to improve their health care, their health habits and treatment compliance. And so the government might be a pusher of data or at least a place where, when the patient is authenticated, can grab that data.
I see VA doing that in myhealthevet; I see CMS trying to do that by putting information on a website; I see Social Security doing that by getting access on the website. I see all that feeding into what I want in my home for my own personal use.
MR. LANSKY: Good. Thank you.
DR. COHN: Linda?
MS. FISCHETTI: Cynthia and David, thank you very much. I very much look forward to your report when it's completed and I think it will have great utilitarian value for us.
I do want to mention that if you are taking on the taxonomy issue, Jeff so eloquently sent us back to the historical benchmark from 1991 of IOM, that has been used repeatedly internationally and expanded upon, and ISO technical committee for health informatics 215 is publishing a scope and definition for electronic health record and electronic health record systems.
And it has a great deal of definitions that we here domestically are not yet using and it also has helped set the explicit expectation internationally of the differentiation of the various types of EHR and EHR systems.
So I would suggest that you look at that.
MR. LANSKY: Thank you.
DR. COHN: Great. Now, I think we're sort of finishing off the session. Now, John, I know that you're on the phone and I think you're raising your hand but we just can't see it very well. So I'm wondering if you have any comments or questions?
DR. LUMPKIN: No, actually no comments and questions, although I did try to raise a point earlier. There are a few of you who may be a little bit more distant from the microphone and it's a little bit hard to hear.
DR. COHN: Okay. Well, John, actually thank you for reminding us, and I guess I would once again remind everyone for the sake of those listening in on the Internet, and I think we only have to ourselves spend one session on the Internet to realize that you do need to get close to the microphone and speak and hopefully slowly so that those listening in can actually here. John, thank you for the reminder on that.
Now, we are running about 15 minutes late. We will take our break. Obviously, I want to thank our presenters for some very interesting testimony and information. We'll start again at about 10:45.
MS. DEERING: Could we check to see if our participants are on?
DR. COHN: Yes, I guess we should check. We have two –
MS. DEERING: George Brown.
DR. COHN: -- George Brown and Thomas Foley calling in. Are they on the line at this point?
Okay. Well, I'll ask during our break if we can just check and let them know that we're running just a couple of minutes late.
So anyway, we will take a 15-minute break. Thank you.
[Break begins at 10:30 a.m. Meeting resumes at 10:50 a.m.]
DR. COHN: Okay, we're going to get started momentarily if I could ask everyone to please be seated. And we obviously want to thank our presenters, George Brown and Thomas Foley, for waiting so patiently on the phone. Really, our apologies that we're running late.
MR. FOLEY (on phone): Not a problem.
MR. BROWN (on phone): Apology accepted. [Laughs.]
DR. COHN: Okay, thank you.
Okay, this is our next session. As those on the Internet realize, this is a meeting of the National Health Information Infrastructure Workgroup of the National Committee on Vital and Health Statistics. I'm Simon Cohn, the Chair.
We're obviously very thankful to have both George Brown and Thomas Foley on the phone to present some testimony and discussion I think of their use of personal health records, so we really want to thank you for joining us. I think we also have in attendance I believe it's Robert Blais –
MR. BLAIS: Yes.
DR. COHN: -- okay, as our third presenter this morning, so we want to thank all three of you for taking time to join us and sort of share some of your experiences with us.
Now, both George and Thomas, I do want to remind you that you are on the Internet and being broadcast, so just – this is not meant to in any way stifle conversation, but just to once again reinforce that this is being broadcast publicly and this will obviously be a public record.
With that, George, do you want to start out, or Mary Jo, did you want to give any introductions to all of this?
MS. DEERING: I was going to thank them both for joining us and let all of our participants know that Mr. Brown and Mr. Foley were identified by CapMed on one hand and by Geisinger on the other and we're very grateful to them for being willing as members of the general public to share their experience.
And I would perhaps just invite each of them to offer a word or two at the beginning of their remarks about how they came to use the particular system that they're using. And again, thank you both, gentlemen.
MR. FOLEY: Would you repeat that last sentence, please?
MS. DEERING: Well, I was encouraging you, if you wished, to open your remarks with a couple of sentences about how you first to use the system that you're using.
MR. FOLEY: Gotcha. Okay.
MR. BROWN: You want me to start, Mary Jo?
DR. COHN: Yes, and I just wanted to explain to you how this works since I'm sure you're not familiar with this group.
What we'll do is let each of you comment, and then at the end, what we'll do is to ask questions and have general conversation, assuming that's acceptable to everyone.
MR. BROWN: Okay, you want me to start, please?
MS. DEERING: Yes.
DR. COHN: Yes – George, thank you.
MR. BROWN: Yes.
AGENDA ITEM – Presentation (by phone) -- GEORGE BROWN
MR. BROWN: I have participated in CapMed since 1999 at which time I was seeking something that would combine my medical records and my wife's. We both have somewhat of medical problems, and it was getting monstrous to deal with. So, being more or less a novice on a computer, I searched the Internet till I found one that I thought might fit my needs.
Fortunately, at that time – they no longer have this, but at that time they had a 30-day trial. So I downloaded the program and tried it for 30 days to get familiar with it.
After getting into it, I could see that it was what I was searching for, so I set up a regular program with them, and it's been with a lot of medical help. I mean, you can tell that the program has been put together with somebody, some type of providers or medical personnel that knows a little bit of what they're talking about.
For example, if you wanted to record a new type of medical detail such as a treatment or a condition, they have a box that you click on, and then when you click for a new program to come up, it'll list various common conditions or tests and you can automatically put that into your file. You can date the file when you had this particular test or condition, which gives you an excellent way to review the history of it.
And then also, as insurance goes in this day and age, you know that most of the tests that you take annually have to come up on a year basis and you don't dare avoid that policy, so by being able to click back on, say, when my wife had the last mammogram, I know pretty much when to start trying to get her appointment for the next mammogram and not violate the insurance regulations on it.
One of the big things that I think CapMed has and maybe other type of programs have this is what they call their "emergency key." This is what's called a jump drive. It's about 128 mgs.
And now they have one that has the complete program of CapMed of what they call PHR, personal health record, built right into the key. That way you can take it from computer to computer and you could also take it into your doctor's office and plug it into any USB port and you can put through what they call the "emergency card" in there, plus any reports that you want the doctor to review.
Now, this course would be under the conditions that the doctor you're seeing had a computer right in the examining room. Some of them do, some of them don't.
A lot of times when I'm going to go to a doctor – say, I'm going to go to a doctor for my high blood pressure, I download a graph that shows the readings I've taken myself over the past 30 or 60 days, whatever the time factor may be. Also, I put in there my weight gain or loss – usually not loss, but hopeful now and then – and my pulse reading and so forth and so on.
I can also bring up a medical history that is pertinent as to – I'm a polio survivor. I got polio in 951 when I was serving in the United States Navy. I was planning on being a career man, but that was cut short. So I have some problems with that. My wife has some medical problems, like I said.
We're taking a lot of medications. You can review these things, know when the due dates are for them.
I don't know what else I can tell you. I mean –
The doctors and nurses seem to be very impressed when I bring these reports in. They want to make copies of them. I usually tell them just to take the copy and put it in my file because I can make another copy back through this computer back here.
I think it's an excellent program, but there's probably others out there just as well.
That pretty well cover it?
DR. COHN: George, thank you very much. I think our next testifier is Thomas Foley, and you're on the line?
MR. FOLEY: Okay.
DR. COHN: Okay.
AGENDA ITEM – Presentation (by phone) -- THOMAS FOLEY
MR. FOLEY: I guess I'm in a very, very different situation than George is in that I'm with Geisinger health maintenance organization, and they initiated to me by suggesting that they had this system called My Chart; would I be interested in trying it out? And that was about, oh, four or five years ago. And they gave me some codes or stuff to get in.
And since then, I have accessed it fairly regularly. I have my own password and ID.
What I find very useful is that it keeps me in touch with Geisinger, Geisinger health maintenance organization.
For example, appointments by them or requested by me are communicated through the system. They have a database. The only thing I can think of – I'm not computer
literate, futz around with it – but they have a database that I can go in and say, okay, you did all these tests on me; now what does this mean? And I could highlight that. And it'll come back and give me a whole summary of what a particular test looks for, what the parameters are, in a language that I can understand.
All my lab tests, recent lab tests, are there. I can take a series of lab tests – let's say – oh, I'd have to pull it up to look at it, but let's say I was looking at high blood pressure. I could bar graph that to see whether it went up or down, stayed the same throughout whatever period of time happens to be on. They have a system.
Now, some of the things that originated, I originated. I had a heart cath done with a Dr. Blankenship about I'm going to say three – that's no longer in there. I would like to have had that stay and be able to go back and look at those records because initially I started printing them out and then I said to myself, this is kind of dumb; it's in the system. So I stopped downloading anything and depended on the system to provide me with it.
I find that I can go in almost anytime and access any information, medical, whether it is pertinent to me or maybe something that has come in discussions with other folks, I get this medical directory and look it up.
What else can I tell you? That's a question I'm asking you.
MS. DEERING: This is Mary Jo. Thank you very much.
It occurred to me that maybe I would invite each of you to address – there's two separate areas, and you can do them both together or we can cover one first and then the other.
The first has to do with -- and it may only be for Mr. George Brown because you are entering your own information – there's sometimes some concern, I'm going to be very honest, about the accuracy of patient-entered data and that doctors are suspicious of it.
I'm wondering: Are you finding anything like that as you use your record, as you put information in? And as doctors look at your information, do any of them question you about this?
MR. BROWN: They haven't, up to this time.
MS. DEERING: And I guess the other side of it is: Is it hard for you to put the information in?
MR. BROWN: I can also put in attachments. I could scan in to a program. Say, my last blood work-up, and add that attachment to the system. I can also go on the Internet, like Tom was talking about, and get medical information as needed.
But no, Mary Jo, none of them has questioned my accuracy of stuff. I suppose if it was way out of base to what they've been seeing, they might, but, no, I haven't had that to come up.
MS. DEERING: Thank you.
MR. FOLEY: I'm in a very different system, listening to George. He's providing the information and I am receiving the information from Geisinger and it's my chart system.
There is something I would like to see in there that isn't, and that is when I'm in the doctor's office and we're going through all the information, he or she is typing into a computer and I can only assume what they are putting in there has to do with my visit and their assumption is to what it is all about.
I would like to see that in my chart so that I could go in there and access that and have it say something like "Patient," or whatever they call me, "No change; everything is fine." Or, "Collect his money before he leaves because he's checking out and doesn't know it."
[Laughter.]
MR. FOLEY: That would be helpful.
MR. BROWN: That was good, Tom.
MS. DEERING: Well, let's just stick with that just a minute. Are there other things perhaps, Mr. Brown, that you would like to see in your system that aren't there or things that either of you don't like about your systems?
MR. BROWN: Well, one thing I was going to point out. I think one of the reasons I've had the success with this CapMed program is the fact that they have a lady name of Beth Hunter who does the support. And as I mentioned to Tom, I have a condo in Indiana with a computer up there.
Well, needless to say, I want to transfer that information back and forth. And before they brought out this key, I would have trouble of transferring updated data from one computer to the other computer. Now with this key, it's all simple; I just plug in, that's all there is to it.
But one of the questions that you asked for me to answer in the future is: How can this be implemented to the masses? Well, one thing they need is a simple program and something that has good personal support, if that answers your question.
MS. DEERING: Thank you.
DR. COHN: Why don't we proceed on and ask Robert Blais to talk with us, please.
MR. BLAIS: I'm going to let Jimmy talk first.
DR. COHN: Oh – well, I think he's included; we were going to have questions afterwards. That was why I was asking Mary Jo whether we were continuing the questions. Maybe I'd better ask all three of them questions.
AGENDA ITEM: Presentation – JAMES MAGIERA
MR. MAGEIRA: Would you mind if I also spoke? I'm a veteran also, and I'd like to – with Bob?
I'd just like to tell you why I find myhealthevet so important is because I'm a Vietnam veteran, and I can remember back when I was standing on an aircraft carrier, and the next thing I knew, I was in the Portsmouth Naval Hospital. I woke up in an intensive care unit –
DR. COHN: Is it they can't hear or –
MS. DEERING: Do you his name for the record? Would you give me your name?
MR. MAGIERA: Oh, James Magiera.
DR. COHN: Okay – I'm sorry.
MR. MAGIERA: -- and I found myself in the Portsmouth Naval Hospital in an intensive care unit.
And when I awoke, there was a person standing next to me saying that everything was going to be all right and you had a sever concussion and I ended up spending nearly three months there, rehabilitation and taking a lot of tests and so on.
And the three months that I was there, I didn't learn much more than what I learned the first day – that I had a concussion, I was going to be all right. What I was hearing when I asked the doctors was a lot of languages I didn't understand. A lot of it was abbreviated. I didn't know what an EEG was or all these different terms. I had just turned 20 years old.
So what I did, like most of the veterans did there, as soon as you got out of the doctor's appointment, you'd run to the men's room. And you'd go in there and you'd carefully pull out the notes so that you wouldn't put them back wrong, and try to read what was written, because you always carried your folder with you.
So we were all in there, trying to find out what the problems we all have.
And of course I'd get out there and you'd be even more scared than when you went in. There's one saying this is going to happen to you, and the other says, oh, no, this is going to happen. So we were totally confused.
And with my myhealthevet, what I've found now is I can go in to my myhealthevet and I can look up these abbreviations and I know what an EKG is, I know what a spinal tap – I didn't know what it was, and I was getting one.
I was really, really scared in the hospital not knowing what was going to happen to me. But with myhealthevet, it's allowed me now to be able to go in and look up all these different terms. I mean, there's 11 million pages in the library alone. So I'm going to find it.
And if I need help, there are people are going to help me find the information that I need.
Myhealthevet also now is allowing veterans to be able to go and self-enter information. That's really good because you're going to be able to put information in from your private doctor, which I do have. I have a private doctor, and I didn't find out much more from my private doctor than I did from my military doctors.
It was still the same thing – it was terminology. I didn't know, I didn't understand. I would ask; they would give me the answer, but I felt so stupid saying, "I don't know what you're talking about."
But now I can take that information and I can come back and I can come back and I can look it up, so the next time I go to my appointment, I know a little bit more what I'm talking about.
And myhealthevet that I see at this point is such a great asset to all our veterans, even in Afghanistan and Iraq. I mean, if you have access to a computer, you can go to myhealthevet. You can record things that are happening to you there.
My father-in-law served two terms in Vietnam and he was being sprayed by Agent Orange. The only reason that he even got something at the end – he died at 50 years old – he was sending letters home saying that he was in the field, where he was in the field, and they were coming him, spraying these liquids over him.
He ended up coming up and had cancer which went all the way up through his spine and through his whole nervous system and he died 30 days later.
Maybe, you know, a veteran who can record these things that are happening now on a computer can bring this up once they're out of the service and say, you know, this is why I'm having problems with my skin; maybe he can look up Agent Orange is, or whatever the things that are out there, these chemicals that are on these bombs.
Who knows what's out there in that desert these veterans are holding, or breathing. But they can record that and then come back later and bring this up to their private doctor or a military doctor or to the VA.
It's a fantastic tool. And I don't know what took so long to get it here because I know veterans are looking for information. They want to be able to find out what's wrong with them and understand what's wrong with them. Just like private people do, they want to know. But they don't know how to ask. The veterans that I see every single day are veterans who are older veterans now that don't know how to use computers very well but there's classes that are coming up to teach them.
I have a veteran who told me, I wish myhealthevet Phase 2 was in about three months ago because he woke up in the middle of the night and he has his own computer in his room, and he said I was getting these sweats and hives and so on and by the next morning, it was gone. He said, if I at the time had my computer and I had a place to store it, I could have stored that in there because my appointment didn't come along until about a month later.
And so now he has a record of it and he says, oh, by the way – that's right; I do have something that happened to me one month ago. Whether it was important or not; maybe it was something he ate, maybe it was a little stroke, I don't know. But he could bring this up to his doctor.
What I'm going to do is once Phase 3 comes into effect is I'm going to take my medical records, and I want all my medical records, because when I go see my private doctor, I don't want 10 percent, I don't want 20 percent, I don't want 90 percent, I don't want 99 – I want 100 percent, because I want my private doctor to know exactly what's happened to me over these years and what's being done to me.
Also, the other way, I'm going to take everything that private doctor gives to me and I'm bringing it to my VA doctor and I'm going to let him see what's going on. I want the two of you to get together, find out what's happening to me is the right thing. That's all veterans want. They want to be cured. They want as much help as possible.
We fought for our country, we bled for our country; we want our country to respect us and to let them know that we care about ourself and we want this information.
And the one thing I can tell you about my myhealthevet up to this point is that it's absolutely straight from the heart. The people that are working on this program are fabulous people. They've done a lot of work, really, really hard work, and I can't thank them enough.
And I have a little bag over there – I wish I had brought it over here – but I've got 18,000 names in it that I could roll out here right now, signatures. It would go two times the length of a basketball court. I've left another 20,000 back that I couldn't take; I'd have to pay for another seat on the plane. They are all thanking you for all that you do. We want more.
We want more because we deserve more as veterans. We fought hard so that you people can try to do the best to help us and we understand that, but we want all our records, and that's a big issue. We want them all.
So I want to thank you for allowing me to come here and tell you a little bit about how I feel and veterans that I have spoken to feel about myhealthevet and personal health records and what it means to me, and to us.
Thank you.
MR. FOLEY: Mary Jo?
MS. DEERING: Yes?
MR. FOLEY: Tom Foley, here.
MS. DEERING: Yes.
MR. FOLEY: I made the assumption that my Geisinger, the information that's in the system itself, is available or provided or is in the record.
MS. DEERING: I'm sorry – was that a question or –
MR. FOLEY: It was a question. And I'm looking at my chart here which is health summary, medications, test results, health reminders, recent visits, immunizations, allergies, current health, you know, all of those kinds of things that are available to me.
MS. DEERING: Yes –
MR. FOLEY: That is part that is in the record already?
MS. DEERING: Yes. I mean, in some records, that is in. In other records, you have to create it yourself.
And are you asking whether myhealthevet includes all that?
MR. FOLEY: I guess. They are things that I did not mention on the assumption that it was part of the presentation there in Washington.
MS. DEERING: I'm not sure – you're free to mention whatever you'd like. But perhaps what I would do is we have one more person who is going to testify, Mr. Robert Blais from the VA. Could I ask you to hold that thought –
MR. FOLEY: Sure.
MS. DEERING: -- and perhaps we'll let Mr. Blais share his views, and then we can open it up again.
MR. FOLEY: Okay.
MS. DEERING: Thank you.
AGENDA ITEM – Presentation -- ROBERT BLAIS
MR. BLAIS: Yes, my name is Robert Blais. I use myhealthevet to record pretty much everything I do now. And you can check up all your medicines and see if you're taking eight medicines and you can check them to find out any reactions they have to each other and you can actually print it out after and bring it to your doctor.
And, oh, there's all kinds of really good tools in there for questions that you just don't know about yourself. It's just amazing how much information; it's hard to really comprehend all that they actually have, looking into the Web page.
I'm trying to think of what else I can do with that. There's an animation, animated part of it, so you can look any kind of parts of your body, the names of the parts of the body, the muscles and the nervous system. Pretty much what I do with it. And still it's never-ending learning because it's so huge.
MS. DEERING: Thank you.
DR. COHN: Okay. Does the panel have questions? I think, John Paul, I saw your hand up earlier. Do you want to start and then – oh –
MS. DEERING: Do you want me to read –
DR. COHN: Okay. I guess Mary Jo goes and then John Paul and then Jeff.
AGENDA ITEM: Presentation (by email) – BONNIE THOWSON
MS. DEERING: I'm actually now speaking on behalf of someone who couldn't be here when we trying to identify people who were using some different form of personal record.
I was also referred by David Lansky to a woman named Bonnie Thowson, who couldn't be here but who sent me a short email to explain how she had used a personal health record. So I'll read it verbatim; it's just a half a page. It says:
"Mary Jo, I am so sorry I missed you this weekend. I would happy to share my experience with you.
Since I have been and will be out of touch by phone, I thought I would share my experience of my Shared Care Plan with you in writing via email.
"I have two granddaughters who are 11 years old, and this summer we went on a cruise to Alaska, cruising being my favorite way to explore the world. Of course, the girls know of my diabetes and we had talked about the Shared Care Plan, where it was, and how it could be used.
"One of them had been with me once when I had a blood sugar drop suddenly, and so she knew from previous experience what to do in case I couldn't tell her."
"We were getting ready for breakfast one morning and I suddenly became aware that my hands were shaking and I began to feel ill, then dizzy, and couldn't focus. I told the girls I wasn't feeling well and to get help. That was the end of me.
"One granddaughter took the paper copy of the Shared Care Plan with her to the medical office on the ship while the other stayed with me. The medical team arrived a few minutes later and supplied the medical treatment I required. Everything worked out great.
"I know that the Shared Care Plan saved my life. All the information the medical team needed was on the plan – medical conditions, meds and dosages and allergies – all within their immediate reach.
"I am sure the outcome of that outing would have been different had I not had the Shared Care Plan with me. Needless to say, I'm also very proud of my granddaughters, who kept their heads in an emergency.
"Bonnie Thowson."
MR. BLAIS: Shows the importance of it!
Questions, Answers and Comments
DR. COHN: Okay, John Paul, do you have some questions?
MR. HOUSTON: Yes, I do. Not being a doctor, one of the things I always worry about myself, and I know when we talk about PHRs and other things, and I think it's specifically true where PHRs contain information from the medical record, and I guess I'm concerned about whether the patient understands the nature of the information that he or she is looking at.
And I know I guess Mr. Foley said that in the Geisinger My Chart portal he has the ability to look at his medical records information, and I guess the same holds true for myhealthevet.
I mean, my question is, is it something that you actively look at, your information, or you just like the fact that it's available for your other care givers and do you find yourself trying to understand it more or finding that you don't understand it as well as you might think then when you go talk to your physicians? I'm trying to understand perspective.
MR. MAGIERA: Oh, definitely, definitely. I interpret it one way and the doctor will interpret it a different way, and that's why you have to get together. That's why we need to get together, so that we both understand what we're talking about. Absolutely, absolutely. I'm not a doctor; I'm a horticulturist – I grow flowers, I work with plants. I don't know nothing about that.
MR. HOUSTON: Do you find yourself sort of spending a lot of time researching, trying to understand what it is –
MR. MAGIERA: Yes, I do. I do go in, and I'll go in the computer a lot. And the other thing that's great about myhealthevet is the information you're getting on myhealthevet has been looked at, someone has checked it out, so it's going to be pretty accurate.
The stuff that's out there on the Internet, I don't know if it's true, I don't know – I could be writing that. Anybody could be writing something, you know? I don't know.
But I know in myhealthevet I can trust it.
MR. HOUSTON: Do you fear that other veterans may misinterpret or look at their information in myhealthevet and may not make the right decisions or misunderstand what it really means?
MS. FISCHETTI: Basically, would it be scary to see the information and not have the context? Is that –
MR. HOUSTON: Right, exactly, or misunderstand the context and misinterpret the information?
MR. MAGIERA: Myhealthevet isn't in the third phase yet which is going to allow us to go into read our medical records, so it's not there yet. But I think I can answer that a little bit.
It's true – I might be a little scared to see what it actually really means. But I've been in war; I'm not that scared to see information. I had bullets shot at me, I got hit in the head with a wheel, you know? Yes, it's a little unnerving to know that maybe something you have, you're going to die from it in five, 10 years. My condition, I may be blind in another six years, not totally blind, but legally blind, because of what happened to me.
Sure, that's frightening, that's scary. I don't know what I'm going to do, but I know after talking to doctors and going on different places on the Internet and reading about it, I feel a little bit better. I don't know how true all that is, but I know when I go into myhealthevet and I read it, I feel a little more comfortable because I know it's been looked at and, you know, I live with it – you have to.
MR. HOUSTON: Mr. Foley, just briefly, do you find the information –
MR. BROWN: I've got a question that I'd like to ask somebody.
MR. HOUSTON: But I'll ask Mr. Foley the question first. Do you find the information is understandable in the Geisinger my health, my chart system.
MR. FOLEY: Yes, I do. I find it very useful. While we were talking here, I just pulled up my triglycerides.
MR. BROWN: That's something called cholesterol.
MR. FOLEY: I've had a family history of health problems. I had my heart attack at age 39 and so I do tend to try to take care of myself. And my cholesterol has been in the 238 range for years and years and years, and Geisinger has put me on a cholesterol reducing drug and I'm now down around 170.
So I think being able to look at those kinds of things gives me some encouragement – like, hey – you know; I'm pushing 70 right now and I'm doing pretty good.
DR. COHN: George, are you there?
MR. BROWN: Yes.
DR. COHN: I guess we should ask the same question of you as well as it sounded like you had a question also.
MR. BROWN: Yes, I've got a question. When Mary Jo and I were talking earlier, the past couple weeks ago, she mentioned the fact that you had some ties with the VA, this group has ties to the VA's ear?
The reason I bring that up – I'm a service-connected disability, been going to the VA since I got out of the service in 1952, and this is the first time that I've heard about this myhealthevet. While you folks were talking about it, I went on the Internet and put it in my "Favorites" so I can go back and review it a little more.
MR. MAGIERA: Good for you.
MR. BROWN: But I think it might behoove the VA to increase this information to the veterans that this is out there so they can take use of it.
MS. DEERING: In our third session today, we will have Jimmy coming back and speaking about what he's done locally to reach out to the veteran population, and I don't know if that will be the same type of activity that took place in your environment, but Jimmy can certainly take your contact information and be in touch with you directly.
DR. COHN: And, George, that was actually a person representing the Veterans Administration who is part of our staff on the Workgroup, so I think she heard you. Thank you.
MR. BROWN: Just a suggestion, don't need to say ashamed of myself, but I didn't know this was available because I've relied on the VA for many things – I've got a scooter from them, I got a grant for a disabled home, and I thought I was pretty much up on it, but I find out now that I wasn't.
MS. DEERING: You know this actually – this is Mary Jo – and this suggests a real challenge. George, you have been a CapMed user for so long, you've got your USB, you've got all your information. You don't yet have myhealthevet. The question to VA is: Can you take his USB and dump his information that he's collected over all these 10 years and put it into myhealthevet for him?
MR. BROWN: Well, that's a good question, and I think they would be able to because all they'd have to do is take my health key, the jump drive I was talking about, plug it into their system, and they could dump it in for at least the stuff I want them to put in.
MS. DEERING: We'll have you come back in a year from now and talk with Jimmy and everybody and we'll hear the story of how it happened, okay?
MR. BROWN: Okay, fine.
DR. COHN: Jeff, I think you're the next question, and then Gene.
MR. BLAIR: It is a pleasure to hear positive stories about how something like personal health records could be helpful, not only positive stories but even enthusiasm about that. But that's not where my question's going to lie.
My question is going to try to find out from all of you who have benefited from personal health records and are in many cases even enthusiastic about personal health records if you have tried to share this benefit with either your friends or your relatives and if you've had experience where they either are not able to make use of it or don't want to make use of it or object to making use of it.
What have you run into in terms of barriers of others, friends or relatives, to getting the same benefit from the personal health records that you've been enjoying?
MR. MAGIERA: I can kind of answer that. I think that one of the big problems I find is that there are a lot of veterans who still don't know how to use computers properly yet. And I think once you can teach veterans how to get on to myhealthevet and how to use it properly, I think that barrier is broken. Then you will find the benefits.
If you don't know how to use something, and you can have a beautiful Corvette, but if you're not a real good driver and you don't know how to use the power, you might as well get a Volkswagen. This is the same thing.
Once you get in there and you learn what you can do with the power that you have there, you'll go back again. I guarantee you will. It's an educational problem.
MR. BROWN: This is George Brown. My experience with trying to share this, my CapMed, with friends and family has been both positive and negative, and I think I'd have to draw the line as to the age group that is positive or negative.
Somebody in my age group, in the 70s or so, that has health problems, they're very enthusiastic about learning something like this and setting something up. I run across an individual in my family or a friend that's in the 40s or 50s, they don't seem to be too interested because they don't have the health problems, they're not taking the medications, they're not going to the doctor as much as us older folks are, and it's just something they're going to worry about in a later stage in their life.
MR. FOLEY: Tom Foley here. I'm probably the only one, my wife and I, with Geisinger HMO. The rest of my family are in other areas of the country and I don't know if they have that available.
MS. DEERING: This is Mary Jo. I only wanted to add a little marketing pitch in that there are other plans and providers that have these, so you could tell them how wonderful yours in and then you could tell them to go to their doctors and ask for one.
MR. FOLEY: Yes, and I might also add that I had a urologist and an ophthalmologist that I was using that are not part of Geisinger – that is, they could not input their information in the Geisinger system. So I have opted to going, or ask to be put in, with doctors who have access to my chart for my urology and my ophthalmologist and all those tests and stuff will now become part of the record for me to access.
MR. MAGIERA: May I say something about younger veterans maybe not using it as much also? For one thing, again, they don't know about the program yet. But there's a lot of stuff in there for young veterans. There's health, there's exercise programs, weight-lifting programs, there's all kinds – there's more than just medical information per se. You know, I have that broken out.
I mean, you can go in there and it'll tell you how to have a 101 diet management program, how to exercise properly, how to ride a bicycle properly, how many miles you should go to lose a few pounds or whatever it's going to take.
There's a lot more to myhealthevet even for young people, but then again, what it is, the young veteran has to know about the program. And once they do find out about it, they'll go to it to find these things that are in their age group. That's what's good about myhealthevet. It's just not about older veterans. It's about young veterans. It's about the veterans who's coming out right now, and the veterans who are coming out right now are young and they know how to use computers – they all use computers.
And when they find out about myhealthevet, I'll guarantee you they're going to go on it, because I'm experiencing it right now. I'm doing classes on weight-lifting with young veterans who come into the VA and the first place I send them is myhealthevet and say, go look up some of the myhealthevet tools in there about weight-lifting and how to take care of your body properly.
So there is things here. They just need to know.
DR. COHN: Okay. And Gene, I'll let you ask a question – you're next.
I just have a question, Jim, only because we didn't really have a formal introduction of you now. Are you actually employed by the VA or –
MR. MAGIERA: Yes, I am.
MR. BLAIS: I am also.
DR. COHN: Okay. In terms of your positive statement, I just wanted to make sure that we had full disclosure on that, okay. I mean, thank you – I just wanted to clarify that. Gene?
MR. STEUERLE: I wonder if any of our speakers have run into any obstacles on the part of providers who feel that since they're coming in with information or demanding information – I'm not just talking about what you would do on line – that you're adding to the time demands on the providers and so they react negatively.
And only by way of anecdote, I remember one time recently when I was forced to use a formulary and I called the doctor. He was very upset because he had to go through all this stuff just to switch my prescription. Well, if you think about it, it's not worked into his time schedule. He had to figure out whether he could charge or not charge for it.
And if there are additional time demands on this system, it has to come from somewhere, and often in some ways they're not chargeable. If you go into a doctor and have a lot of information and want to talk about and he schedules you for eight minutes or whatever it is, he's got to figure out how to make that up somewhere else.
So I'm just curious whether there's been that type of reaction. And it's also related, I think, to the Veterans Administration a little bit, because my sense is a lot of services in the Veterans Administration in truth are queued – that is, you know, there's a fixed budget, and so the way the Veterans Administration solves some of its problems – this is common in social policy – is they set up queues or lines and some people get in and some people don't and whether they're getting it because you triage it or it's first come/first serve or whatever else. So the more time demands on the system with a fixed amount of resources where you can't charge it, the more it could push against something else.
So I'm curious whether that means there has been some sort of reverse reaction. Or, could I have it totally upside down? People are glad you're coming with the information because it makes their life simpler and they can act more quickly and efficiently. Any of the four of you – not necessarily all of you – but I'd like a comment.
DR. COHN: George and Tom, did you hear the question?
MR. BROWN: Yes, I can answer it two different ways.
First of all, I find when I go to the VA that they are very receptive to information on my polio syndrome because it is a disease that's in past history and a lot of doctors don't know anything about it.
I also belong to a post-polio support group down here and we have a lot of literature, medical literature, for doctors we go see. Now, when we take that in, there seems to be – I wouldn't want to use the word "resentment," but it seems like we might be infringing upon their medical knowledge. And they're not too receptive to that.
This is a unique situation, though, when I'm speaking about the post-polio syndrome.
But when you go in with other medical information or questions of diseases or conditions they know something about, they seem to be very receptive. But when you go in with something that has a gray area of information to them, they kind of give me the impression that "what are you doing coming in here and telling me what to do?" You know?
So we kind of have a tendency to tread lightly on that.
MR. FOLEY: Tom Foley here. My experience is to receive information. I have never found it necessary going to a doctor's office other than with a list of questions.
DR. COHN: Robert, do you have a comment on that?
MR. BLAIS: The easiest way to comment sometimes is if you want to take the whole records with you, you can just – like a doctor has a computer, you can just type in myhealthevet and just show him all your records instead of – I don't think you can do it on a Pen Drive yet. You can just type it in and just show them everything you got right there; all of it's all manually input.
I think later on they're going to incorporate it so that it's going to start showing the records that the doctor's put in from the personal records now to myhealthevet web page.
DR. COHN: Okay. Cynthia, I think you're up next for a question or comments.
MS. BAUR: Well, I just wanted to thank all the speakers because I think they've done a great job of illustrating some of the issues we've been thinking about for a long time and the connection – to go back to the discussion this morning – the way that some of the policy goals and the strategic interests that sometimes don't get connected do get connected in very interesting ways.
And we actually already happen to have, interestingly enough, three national health objectives on some of the issues raised right here.
One, I think, on this question of access. So often we think about access to the computer technology itself, but what I heard very clearly from the speakers today was access to information being so powerful to them. And I didn't hear anybody saying 11 million pages overwhelms me. What I heard was 11 million pages is really interesting to me.
And I think that's a very important piece of information for us to keep in mind and probably blows up some of our assumptions about what people are really interested in.
I also think it points to the importance of user-centered research and the need for that, to question some of our assumptions about what people are really interested in.
The other thing that I heard that I thought was really interesting was this – we talk about it in health policy in terms of health literacy, and I heard some very interesting comments from the speakers about the intersection increasingly of health literacy concerns. What is it that people understand? How do they use information? And how does that work in an electronic environment?
And I think PHRs are a really interesting place to kind of test out some of those issues and questions.
And I think, then, the final one is to this issue of quality. And I was really interested in your comments about the reliability and quality issues and sort of how you sort those out for yourself, because again I think David had referred earlier this morning about how some of the agencies are thinking about their roles as providers of reliable, credible information and how to integrate that with the PHR function. And I think that's something that really we've heard from the speakers but deserves greater attention as well because that is an important role that we're already playing for the public.
DR. COHN: I think, Marjorie, you have a question, comment?
MS. GREENBERG: Yes, thank you. First of all, I want to thank everybody. Having worked with this Committee for a number of years, I was just very excited that actually two testifiers were able to share information that was personally useful to them, a testifier here versus one of the phone finding out about myhealthevet.
I said, you know, often we deal with very abstract ideas and concepts and it was exciting to me to have that exchange and I thank you all for participating.
We've heard a lot about access to information and how valuable that is and we're all believers here around the table, that's for sure, but one of the topics – I don't know if you were all in the room or probably the gentlemen on the phone maybe didn't hear – in the first presentation, there was a lot of talk about privacy concerns, security concerns and maybe issues related to limiting access to data.
And so I just wanted to ask any of you who do have the type of record where you are entering information into the record, what types of access controls you have as to who can have access to that information and how important it is to you or what kind of priority you put on those issues of being able to keep some of the information that you enter perhaps so that you can be looking at
patterns and identifying what's important to you, keeping that confidential and sharing it perhaps selectively with some providers and not with others, or whether those are both functionalities that you have and how important those are to you.
MR. BROWN: This is George Brown. I'd like to fend that question because I've got to bug out of here. I've got another appointment pretty soon.
In my case, with this healthy key, the one that's plug into the USB ports of computers, I have a password built in there, first of all to access it, then after that I put in only the reports that I want a particular doctor to see and I can eliminate any other reports or he's not able to access.
Privacy is of importance to me because of the way things operate in this day and age and identity theft and everything else, so I try to keep my personal records as private as possible. And I know that it's in the public view right now, the Privacy Act and how important it is, and some people think it's a real pain that they have to sign these forms and everything else, but I know it's a necessity. And God forbid we live in that kind of an area, but we do.
But I feel that with this program that I am able to keep the things private that I want to keep private.
With that, I want to thank the group for listening to me and I'm very hopeful that this thing is going to expand to help other people in the future. Thank you, and goodbye.
MS. DEERING: Thank you, thank you.
MR. FOLEY: So long, George.
MR. BROWN: Right.
MS. GREENBERG: Anyone else want to comment on those issues?
DR. COHN: Yes, Tom, do you have a comment – or Robert?
MR. FOLEY: I'm not big on privacy. I respect what George was saying. I understand that people do have concerns about it. It's just not one of my biggies.
My experience with My Chart here, it is only available to me unless I use it to schedule appointments or request appointments or information that then goes to, I guess, another computer someplace and then eventually to somebody who says, yes, I'll reply, and that information comes back. But I don't believe anyone has access to my particular My Chart. And that's an assumption. And if they do, that's okay, too.
MR. BLAIS: Nobody has access to your records because you have a user name and a password and that's it.
MR. FOLEY: Yes.
MR. BLAIS: That's the way myhealthevet works.
MR. FOLEY: That's what I have – user name and password.
MR. BLAIS: Yes, so if nobody has it, then nobody can get in.
MR. FOLEY: That's my assumption. But – [laughs] – I know that there are many, many things that can be –
MR. MAGIERA: In my case, as far as – you know, the government, I think they know everything about it. I've been in the military so I think the government, they know everything about me anyways. They probably have my Social Security number 20 times over.
But I do worry about private sector. I do worry about some way that someone beyond the government could get my Social Security number or something and steal my identity. I don't know if they'd want it, but that does bother me, that does scare me, and that does bother a lot of veterans. When you have to start putting down Social Security, that does have an effect.
But I think the benefits override it, and I think the security that myhealthevet has with their e-vaults, it's secure as far as myhealthevet is. Once you get the material, that's a different case. Your computers better have good virus programs on it or firewalls on it or if you're downloading that information into a library, printer or someplace, you better go pick it up.
Again, a lot of this is educational. But that does bother me – accidentally someone who does leave something behind.
What's nice about myhealthevet, too, is if you don't log off, within about 10 minutes it will shut down, it will log you off. Ten minutes is a lot of time, so you really don't want to do that, but it will log you off.
MS. DEERING: This is Mary Jo and I have a question for Tom Foley. And it may be sort of a hypothetical question and I'll take a hypothetical answer.
Just in terms of context, my understanding is Geisinger is a Pennsylvania health care provider. And it has to do with the value that this is for you and how important having a system like this is.
Specifically, this hypothetical question is: If you move to Florida or if you moved out of state, having had this experience with My Chart, how important would it be for you as you look for another doctor that either they had the same thing because you knew your records were already there, or at least you hoped they were – I guess they might not be, come to think of it; they probably aren't – but anyway, at least they had My Chart and you were familiar with it.
Or, if they didn't have My Chart, because again that is a commercial product that's available to other plans and providers and Kaiser, for example, I think has a version of it, Kaiser Permanent, but anyone, so how important would it be to you in choosing your next doctor or health care provider that they have something like that?
MR. FOLEY: If the options were available to me, choose on that basis, I would choose a provider or a group of providers that I would have access to a system similar to it.
MS. DEERING: Thank you.
DR. COHN: Now, John, do you have any questions or comments at this point?
DR. LUMPKIN: Simon, I think that this was a fascinating panel and I'd like to thank the panel members. They participated like I did, virtually.
Gives us a lot to think about as we move forward this agenda.
DR. COHN: Yes, I agree. And I see Eduardo also has his hand raised. Question, comment?
DR. ORTIZ: Yes, since we have a couple minutes.
First of all, in response to Mary Jo's comment, just bring your attention that I was part of a study that we did at Geisinger where we looked at over 4,000 users. And one of the questions posed was: How much would this influence your choice of a provider in the future?
And there was an interesting response curve. Twenty percent of respondents said it would make a huge difference in our selection of a provider; 20 percent said it would make absolutely no difference whatsoever in the selection of a provider.
So you had these two spikes on either end. And all in between, it was just kind of an undulating little flat line almost, which meant, maybe, I don't know, I don't care.
So at this point it was an interesting theme. There was 20 percent on either end that felt strongly on both sides.
I just want to ask this question to the panel members only because there's so much that is made about the whole issue of privacy and confidentiality in health care and it's just in a way of trying to get a relative importance in your mind.
You know, there's tons and tons of stuff out there in terms of access to your financial records. All the time, I mean, all the different mutual fund companies and banks and everything else. You can pretty much get access to your on line financial information any time, anywhere in the world by logging on.
And, you know, there's a little bit of security in terms of user name and password, but it's easy to hack into that and we've seen that many times. Lots of problems with identity theft.
So I'm just kind of wondering, from your perspective as a user, as a patient, as a user, how do you rate the concern about privacy about medical information versus privacy, confidentiality about financial information, because it's kind of ubiquitous in the financial world because it's already moved out there and we do it, but yet this is a big obstacle in terms of the medical world because we haven't done it yet, so people keep throwing that out as an issue?
And I know me personally, I'm much, much more concerned about people having access to my financial information than my medical information. Now, of course, I don't have HIV and I don't have other things that maybe I'm as concerned about. But I just would like to hear from you guys what you guys think in terms of the relative importance of people hacking into medical information versus financial information.
MR. MAGIERA: Well, they're both really important. You don't want to be able to hack into either thing. So that's why you need someone to teach, you need trainers, you need someone who can teach veterans.
I'm going to speak as a veteran, that you have to have those safeguards that I've mentioned earlier. I trust the e-vault. I don't have a problem with my information going into an e-vault that I know is highly secure and it's being checked on all the time. I don't have a problem with that.
Financially, the same way. If I know that that bank, whatever, has that type of security there, I'll feel safe with them; I don't have a problem.
The problem is beyond let's say the bank or the e-vault that's down in Austin, Texas, where all this information is going into. It's what is happening to the information once I receive it. Do I just throw it in the trash can? I might have my Social Security number, I might have all kinds of numbers on there, all kinds of numbers on there, financial numbers.
We need to teach veterans to dispose of information when they're done with it properly. That's where my fear is. Otherwise, I don't have a fear at all of it. But we need to train – that's so important.
Even private sector, I mean, they need to know that you just can't take paper anymore and just throw it in the trash can. There's people out there who might pick it out. You need to know that you can't leave that stuff behind or in an open computer. When you open things up and you present your information, you have to make sure you're not in a forum where people looking over your shoulder can pick out things here and there.
I think it comes down, to me personally, it's my responsibility. It's my responsibility to take care of my end of it, as long as the bankers or whatever, financial side, is taking care of their part of it. And how do I check on them?
I guess I would look and see if people had complaints, they've had problems. If I find in the future that myhealthevet is having problems with their e-vault, I'm getting out. It's not a 100 percent cure for anybody, but it's a beginning and it's a start. We have to put some trust somewhere. I mean, you have to trust somebody at some point.
We can pick everything apart. I mean, I can pick this sign apart – you know, it's a little too black, my name's should be a little – we can pick anything apart. But we have to take some trust. You have to trust somebody at some point, and that's what we have to do. And education is probably the most important part. Education, education, education.
DR. COHN: Robert?
MR. BLAIS: Yes. I work in the IT field, so it all starts with your computer. You have to make sure it's always clean, like nobody installs any key loggers so they can go back and read all your key strokes. So really you have really a good protected computer, too, to protect yourself. If it's wide open, then people are going to have at all your information no matter if you change your password every day, you know? So you have to have a good, secure computer, then the chances are better you won't get hacked.
DR. COHN: Tom, do you have any comments about that? Are you still on the line?
MR. FOLEY: Yes, I'm still here. No, I think I expressed earlier that that is not one of my big concerns. Earlier, I was asked a question on a new provider, would I be looking for the My Chart thing, and I think I mentioned earlier that I've just changed two doctors. They were under contract to Geisinger but not part of the system and could not enter the system and provide the results and all that kind of stuff.
Security at my age right now, it's not a concern. My big concern is I've got a book that's got all my passwords – everybody wants something different and have stars and this and that. Done.
DR. COHN: Thank you for the comments. Well, I think we're ready to wrap up here. I actually want to thank our panelists and Robert, Tom, George, Jim, thank you very, very much for taking time to sort of meet with us and discuss your views on all of this.
Robert, did you have any parting comment here?
MR. BLAIS: Yes, myhealthevet is not just for veterans. I guess anybody can use that, right?
MR. MAGIERA: That's right.
MR. BLAIS: So it's not just veterans can use that web page to stow your medical information.
DR. COHN: Okay. I think that's an interesting note.
Well, with that, I really want to thank you. It's been a very useful morning. This last panel's been fascinating and very helpful.
So we will take a lunch break now. We will reconvene at 1 p.m. Thank you.
[Lunch break begins at 11:59 a.m.
Meeting reconvenes at 1:11 p.m.]
DR. COHN: Okay, would everyone please be seated? We're going to get started in just a minute or two.
I want to welcome everyone back, and, sorry that we're running about 10 minutes late. I want to welcome David Williams. You're talking about TRIAGE Online, and thank you for joining us. And then we have Patricia Brennan, a pleasure; thank you for joining us. And you're talking about home health and personal health records, is that correct?
MS. BRENNAN: Yes, that's correct.
DR. COHN: We'll look forward to that. Okay, well, David, would you like to start out?
AGENDA ITEM: Panel 2, Consumer Perspectives, cont. -- Presentation – LT. COL. DAVID WILLIAMS
LT. COL. WILLIAMS: Okay. I'm Lieutenant Colonel Dave Williams. I'm a Deputy Director for IM for the EMIT. Under full disclosure, I work for the military, number one.
Number two, the reason I have my particular job now for eHealth which deals with the personal health record is about a year and a half ago I was a user when they started to deploy it, and I felt that eHealth is right where we need to go from the military standpoint to serve our beneficiaries, and I lobbied extraordinarily hard to get the job that I have now, so I was very pleased.
So I went from an early adopter and user to the person defining requirements for eHealth.
That being said, I would like to give an overview of what we're doing for eHealth overall through TRICARE Online and then talk about the personal health record.
The agenda is talk about operational vision, TRICARE Online, operational view of that, current functional overview, functional vision, who we're working with – we're not going alone on this, and I'm very glad to be following the VA; we're working very closely with them and I think Robert and James hit the nail on the head.
We're working with Miss Price on myhealthevet and we're trying to get the same glide path, and I'll talk to that in a second.
The operational view – the system that we have now for the MHS, military health system, the sun does not set on our activities. We work around the world; someone's always working on it.
So the system we push out for the personal health record as well as eHealth overall has to be available at all times. Some of the domains that we touch go from managed care, contractors that we contract some of our health care out, to our composite health care systems here, which really is our health content record, electronic health record.
We view the PHR and our eHealth initiatives overall providing the reach for our health care record that we have. The information in that can be reached around the world to the beneficiaries as well as the providers.
And we have the personal health journal over here. It's one of the domains. Plus, we serve all the other entities that we talked about, everywhere from providers down to the beneficiaries as well.
And I think, as I start walking down this and talking about the applications we provide, I think it's important to remember the big push and why I felt very interested in these particular services.
Thirty percent of the people on active duty move every year. We have a relatively young population. So what we do is take young, child-bearing people, move them away from their extended family, and then we send one of the spouses to a place where there's a lot of sand. So we have people almost in a foreign state, as they view it, trying to get access to health.
So anything we can do to place it on the Web in a user-friendly manner to provide that access is something that we're really driven to do so.
This is sort of our current, and again I did not collaborate with James or Robert before they came on, but if you type on TRICARE on Google search and you get – actually, this is a dated slide; I made this slide about six months ago. I typed in "TRICARE," which is our health care, it goes under TRICARE, you get 1.8 million hits now.
So for a beneficiary trying to get access and information about the common health care that we provide, it's very difficult for them. I kind of view the Internet now as a place that is almost like entropy. You can put information in but it's very tough to navigate at this point. It's almost like a library with no Dewey decimal system in some respects.
That being stated, one of the benefits and one of our missions for TRICARE Online, which is our secure portal, is to try to organize it – one-stop shopping for the beneficiaries.
So as they move from site to site, from country to country, if they have access to the Internet -- and surprisingly, you'd be very surprised at the number of people that do have access; no matter where you send them, they seem to get on the Internet – they have the same look and feel and one-stop shopping for the information. So out of the entropy, we try to organize it.
We broke TRICARE Online into two sides. It's .com – this is the unsecure side, and this is the secure side. And what we do is type, organizing logically, the different entities that want to work with us, outside agencies, VA, purchased care, the service portals, Army, Navy, Air Force --
MS. DEERING: [Admiring the graphics] We want your techie!
[Laughter.]
LT. COL. WILLIAMS: You can imagine what we've done on the Web, then.
[Laughter.]
LT. COL. WILLIAMS: So from the open portal side, our business partners, service portals, for TRICARE Online, health and health resources.
Again, echoing what we've heard from the end users there at the VA, the Department of Defense and VA are working very closely to this. We have contracted out currently with the same contractor for our health content. We both have HealthGate currently for that information.
Between DOD and the VA, we have beneficiaries that are served by both DOD and VA, so we try to have some symmetry, and I'll talk more about that in the future.
And it's very important that when our beneficiaries log on, and if they go in through TRICARE Online, we know that they're hitting trusted health care content.
I typed "cancer" on it just before I came up here. I had over – I think it was 20 million hits on cancer; the winner was "astrology," was the second-most hit that came up. So if they come in through TRICARE Online, we know we're giving them information that has been reviewed and trusted.
Down here on the secure side, the MTFs, the services, Army, Navy and Air Force, have opportunity to expose information on the private side as well as the secure side. The providers here, when I talked about CHES-2 down here, the providers can log in from anywhere on the globe, secure an access to medical record.
We have the service portals, learning management system. This is the PHR. You log in to get to it, so it's on the secure side.
Web enrollment – when our personnel move from state to state, you have to re-enroll in your hospitals. What we want you to do is do that over the Internet. Currently, you have to actually drive down to that facility to register at the hospital.
Next year, through TRICARE Online, you'll be able to just log in again over the Web. We're trying to make it as easy as possible to provide access to care to our beneficiaries.
Learning management system – it's very important as we go through the PHR in our next phases, which I'll talk about in a minute, that the beneficiary has the opportunity to get some education. We're opening up some of the learning management system so the beneficiaries can learn about their diabetes, can learn about if they have asthma, and try to empower the beneficiaries; it's his state in the care.
Now, I heard a question earlier: If we educate the beneficiaries, will they tie up more time with the provider? I'm a Nurse Corps officer and I've found that the best patients to work with are the ones that have been educated because it may take a minute or two more to talk to them, you can communicate so much more information. It saves time in the long run, overall.
Facility pages – our hospitals have two websites. Now, they have the home-grown one that they keep; now they're migrating to TRICARE Online. And our goal is, and we've done this to a great extent, is if you log on TRICARE Online, it brings you to the hospital that you're enrolled in. So log up, you go right to Walter Reed or Bethesda or Andrews, if that's where your provider is. And each provider has their own web page, each clinic has their own web page.
And over here – it migrates over there. We'll have secure messaging in the near term.
And on line appointing. The VA and DOD started working together about two years ago and we drifted a little bit apart; a year ago, we came back together. I'm working with Miss Price who's doing a super job.
And the VA went very heavily towards the clinical side, the patient health record, and I think they've done a super job, personal health record. We went more on the administrative side in terms of being able to make your appointments over the Internet, just like you make your airplane tickets, just like you go shopping. And I'll show you that in a second.
So now that we're working together, we're trying to get the best of both worlds, capitalizing on the work that Miss Price and her team has done for the personal health record, and they're working with us to pull in our appointment business process.
TRICARE Online is the secure, one-stop shopping portal for eHealth and telemedicine initiatives for DOD. What we currently offer in TRICARE Online is a personal health record, appointing – you can appoint yourself to your primary care provider as well as specialty clinics such as, if you want to get your eyes checked, if you want a school physical, your breast mammograms annually, things that you shouldn't have to go through your provider to talk to.
TRICARE benefits link – a lot of young soldiers don't know what their benefits are, so it's a good opportunity for them to go off and to actually understand it.
We have 18 million pages of trusted health content which I've talked about, but I think cannot be overstated. And other utilities that we have there we've seen great use of is the drug/drug and drug/food checker. You can log in if you're on medications and actually interact to see if the medications are compatible and if the food you're taking is all right. Here again, try to educate the patient so they can participate in their care.
The non-beneficiaries provider – we're trying to push this open so the providers use it as well. We're required to expose certain portions of the medical record now to the providers, pre- and post-deployment health information they can log on and see as you come in as a patient. They have full access to all your labs, all your consults right now over TRICARE Online through their systems, and we're going to open that up to CHS, too, you have a one longitudinal access to the electronic health records, which would be TRICARE.com, role-based security.
I-learning and web-based learning is something that not only will be available to our beneficiaries but our providers as well, anthrax training and things of that sort. Again, it's one secure portal for MHS.
If you looked and logged in to TRICARE Online, right now the page that you're looking at, no log-in is required. What we're trying to do is make it easy as possible to expose as much information that we can currently, prior to requiring a log-in.
So, go to the url tricareonline.com and you'll see this, and you'll see some of the health content information and the interacting tools for training on it. Eventually, it will fall behind our password, but we're trying to change behaviors of people as quickly as possible by exposing as much up front and they can register as time goes on when they find there's some utility.
Currently, we contract out for our personal health record and we're using a product through HealthGate but it's a WellMed, WellMD personal health record.
The issue we have with this – and there's nothing bad about this in particular, but we wish to do is to have it interactive with our computer electronic health record, case in point that you'd be able to see your labs, see the progress, and that's something we're well on our journey to do.
Secondly, we're working very closely with the VA that it's the same look and feel. So we heard earlier that the veterans, young veterans, coming out don't the use the system; there's education issues associated with it. And we have similar issues.
But as the veterans come out after 10 or 20 years of working within the service, there'll already be accustomed to it, this is the way they'll do business. When they get on to the VA, we'll have the same look and feel.
And we also are in a process of defining the requirements that not only our particular personal health record, which may be the same as the VA – we haven't gone down that road that far yet – but at least we'll cross-populate. The requirement is that at any given point, you can press a button and the two personal health records will synchronize, so as you move, you go from the DOD to VA and back and forth, and as I said, there's an overlap of about 30 percent of our beneficiaries that are dually served, will have that same information.
This is an example that you can put in your current health conditions of our personal health journal. We'll talk some more about that.
Our total stats in reference for TRICARE Online – we have over 220,000 users right now that are registered. The personal health record right now, currently we have 6,060 people that have used the – and logged in, registered, under the personal health record. What is interesting is it's been exposed for 24 to 30 months, and really the growth is in the last year that we've had, out of that 6,600 users, 3,800 have logged on, registered, in the last 12 months.
So we feel that we're in the growth curve of this and we suspect that will continue.
The number of users that log into our personal health record currently – there's about 1,000 unique users per month that log in, and those users on the average log in three times a month. So we feel that's a pretty high usage rate for their personal health record.
Popular features that we got back were that personal health issues that may affect users and family members, and again the VA personnel talked about, it's smoking cessation classes that you can take over the Internet; your height and weight; am I at risk for diabetes; am I at risk for heart attack; and there's a series of questions that you interact with. That's extremely used.
And there's some thought for high usages because you can sit around and play with it. This is the opportunity, the discussions you would not have in that eight-minute appointment with the physician. You can sit there and actually interact with a tool that can kind of bring you up to speed and educate you so when you do see the physician, you can maximize that eight minutes.
Appointing – we're trying to give a suite of activities or applications through the Internet that will bring people on. Appointing started in 2002. You can make appointments for your primary care provider and other sub-specialties that I talked about. You can see we're on exponential growth. 2002, we had approximately 9,000 appointments made over it. 2003, we're up to about 15,000. 2004, we're at 50,000. And we continue to grow.
There's a good return on investment for us. If we make the appointment over the phone, by contractor, the costs in the industry range between $7 and $12, which we have similar costs. If you do it over the Internet, it's the function of use; at 50,000 appointments, we're at a break-even point in terms of what the application cost us. Beyond that, as we make more annually, we'll have a significant return on investment, the more appointments made.
But the ease of making an appointment isn't the only thing. When you're making the appointment, you can print out directions to the provider, to the hospital. You also leave from your home or at work with a sheet of paper that tells you what time your appointment is and who your doctor is and driving directions to the clinic, the clinic hours, phone number, so you don't have to write anything down.
What does that mean? Well, we've found that since we've been doing this, the no-show rate – again, we consider a no-show or access to care issue because if you make an appointment and don't show up, you bump somebody that would have – we've found that no-show rate military-wide runs about 7.5 percent. If you make it over the Internet, TRICARE Online, it drops to 4.4 percent. So we feels that's significant numbers.
Beneficiaries – again I keep using the phrase "one-stop shopping." We're looking for a future vision, working with the VA especially for the PHR, a fully integrated personal health record that communicates with your electronic health record.
Patient-to-provider secure messaging so you can ask questions back and forth from providers and patients, that's an issue that the patients want very much and the providers, there's mixed camps it's a good idea or not, from the provider standpoint.
Drug renewals/refills – provider-directed, Web-based education, for example, information prescriptions. I don't know if you've heard that term or not, but we're in the process of working with the National Library of Medicine and Johns Hopkins as well as Conemaugh Health Systems to try to automate that.
So when you go in and see your provider, they will actually give you a prescription pad that's circled, so when you go back home, you can log back on to TRICARE Online and it'll direct you right to that subject matter at the National Library of Medicine. So we're very interested in that. They want more health content and they've requested more tools and calculators.
Administratively, we want to continue to expose more information to clinics – provider information, access to care per our contract purchase care, managed care support contractors, we want to expose their appointments there in the long term.
Appointment reminders are on the glide path, so not only that you have an appointment, once we have secure messaging we'll be able to remind you the night before or the day before of your appointment and what you need to do in preparation for that appointment.
And entitlement and on line enrollment – again, as you move from hospital to hospital.
Providers – role-based security, single sign-on to clinical applications. We have a large number of clinical applications out there now. What we want to do -- I think we also heard that earlier that a gentleman had a book with a list of passwords that he tried to keep up with – now that we're rolling out a single sign-on capability that once you log on to TRICARE Online under that role-based security, as a provider, you can go to the clinical systems that you have authorization to use.
Secure messaging I talked about.
Trusted medical reference, the resources, we'll increase that.
Telehealth portal is everything from telemedicine up to actually full-blown video interaction that is on the glide path for TRICARE Online.
Patient-directed Web-based education – I'm sorry; I went over that already.
And administrative functions.
We feel very strongly that we need to have unity of purpose as well as unity of effort for our soldier members. We want to leverage the requirements and best practices, what the VA has done, and the VA is in the process of doing the same for us.
In the six months, we're shared over 1,000 pages of requirements on the eHealth portals that we're building towards.
Secondly, we are both on our requirements generation IPT, so the DOD's at the table, as well as the VA on our side.
We're also leveraging communities on the commercial side. We're collaborating with the National Library of Medicine, but on the community side, we are able to work with Conemaugh Health Services, a 12-month Congressional project. Their interest in us is taking the eHealth portals that we have and push it out to the senior centers that they have in Pennsylvania, so take this ability, move it out, expose that information at the senior centers because it's a rural, poor area but have the machines there; we're working with them. And also with Conemaugh is interviewing our end users to find out what the pent-up demand is for it.
Conclusions are:
TRICARE Online, at least from the MHS standpoint, is our one-stop shopping for health information and services.
PHR, with the surveys we've done, is clearly one of the top four requests that the end users have consistently asked for.
On line appointing continues to grow and continues to have acceptance on that.
We're looking for a fully integrated PHR. That's what we're moving towards as quickly as we can. And also, patient-to-provider secure messaging.
Our collaboration continues with the DOD, VA, National Library of Medicine, industry, and we're really pushing this because the conferences I go to, beneficiaries really want to have access to their information and they want one site that they can go to to get that information.
That concludes this portion of my brief.
DR. COHN: Okay, David, thank you very much. I think we will let Patricia present, if that's okay, and then we'll have questions and discussions after.
[While the next speaker is setting up the computer, Dr. Cohn asked Lt. Col. Williams to continue.]
I think we were asking, was there another dimension to your talk that you were going to give as a user or something like that, I think?
LT. COL. WILLIAMS: Oh, yes. I didn't know if it was a question up there. No – the reason in particular that I started – lobbied – for this job is the idea of actually getting on and using it for putting information down. It's very difficult when you move so frequently to have one constant place you can go.
And from an end user perspective, the utility was great. You had to log and get my information that I needed, make appointment. The trusted health care content associated with it, I thought that was the greatest thing.
DR. COHN: Thank you. Pat, it looks like you are up and running.
AGENDA ITEM – Presentation – PATRICIA BRENNAN
MS. BRENNAN: All right, thank you very much.
DR. COHN: Thank you.
MS. BRENNAN: I'm Patti Brennan from the University of Wisconsin, Madison, and I'd like to introduce my co-investigator, Laura Burke, from Aurora Health Systems in Milwaukee. We're going to be talking today about health at home, personal health records in support of home nursing. And I want to thank you for this opportunity to expand the concept of personal health records from an object or a repository to a system of information that affects the daily lives and the health of individuals in their homes.
Wisconsin is a large and rural area, and we find many challenges in home care. Many, but not most of those, are faced by people alone, without a health professional present. Sometimes a visiting nurse or physician does come to the household – social worker, physical therapist – but much of what we'll be talking about today applies to the concept of health as it occurs in an areas where there's geographic dispersion, no central clinic that individuals are coming to, where individuals are faced with doing three complex activities – managing medication, monitoring health status, and making timely decisions.
Now, these individuals are not disconnected from the health care system, and when we speak about information that they're doing in their homes, there is certainly a connection to content that has to be transported to or sent to a health care provider during an encounter.
But we're largely going to be talking about what happens inside the house.
We'll begin first by talking about one of our projects that's going with Aurora Health Care, and this is a project we call Heart Care 2. It's the care of patients with congestive heart failure.
And I'm going to begin by talking with some comments the nurses have given. What do they expect patients to be doing in the home?
First, though, I'd like to call your attention to the picture of the calendar on the right hand side of this slide. This is the most critical health information management device in the household. Calendars provide a point of organization, of reminder, of recognition and coordination for a family's health information, and they're absolutely essential when it comes to managing people with complex health needs.
The nurses who care for patients with congestive heart failure are largely caring for a population of patients who are older. They have values and beliefs about health and health care – who should be involved with it – that have to do as much with culture and family habit as they do with the nature of the health problem.
These individuals have developed patterns in their household already of interacting, of behaving, that they follow through with as they're trying to manage their illness.
Additionally, congestive heart failure, for those of you who aren't familiar with it, is a kind of illness that is characterized by progressive decline. And our optimal goals in health care is actually to slow the decline, or stabilize, rather than to return to a high level of wellness. So, imagining moving about with a personal health record is actually not central to our topics.
The nurses tell us, though, that they ask the patients to monitor several things. They want to know:
How is the patient taking the medication? And this may range from knowing did you or did you not take your medications as you're supposed to, to knowing on an hour-by-hour or day-by-day basis exactly what medication was taken, in what sequence.
We need to know about the patient's weight and this has much implication to how someone actually gets weight, clothes on/clothes off/time of day/what you've been doing before as it does to remembering and recording, being able to see the scale, not lying, and writing down on a piece of paper what that weight should be.
Very often, the weight will be written down on a calendar which could later be reviewed with the nurse to look at the progress of change over time.
Diet, and particularly salt intake, becomes important, and you'll notice the calendar is particularly bad for that; there's not a lot of place for writing salt intake information.
Monitoring the symptoms of congestive failure, including comfort, breathing, pain and the ability to carry out activities of daily living becomes important in different points in the care of the person, not all the time. So the needs for health information change over the course of the illness.
And finally, a very important nursing intervention with patients in the home is something called the Health Activity Prescription. Nurses encourage patients to carry out certain activities to either maintain muscle mass or body strength or to manage the functional decline that occurs with congestive heart failure. And keeping track of these instructions becomes an information management challenge.
Largely, though, you must remember that the goal in home care nursing is to have the patient become more and more able to make the right choices, to understand what's going on with them, who has to be involved, who has to know, who should I be contacting, and how do I make that contact?
So our goal of health information management and the goal of the personal health record in home care is very much to insure the patient's level of independence rather than to facilitate some communication between a provider and a patient. It's not just about having a record that can be reviewed during a visit, but it's about setting up with the patient the ability to recognize their own patterns, to record and communicate about important health data issues.
So the personal health record takes on an active role in the patient's life of increasing self-awareness and making them better able to manage their own care on a day to day or hour by hour basis.
Now, how does patient's self-report help in home care?
Well, first and most importantly, the person becomes actively engaged and mindful of their health status. This has been shown to be critically important in helping an individual attain better health outcomes – that is, more awareness of yourself, what causes changes, what causes crisis, leads you to respond to them in a better fashion.
Nurses who are involved with patients tell us that self-report from patients helps them better understand the between-visit status of the individual. But all data that's acquired must be interpreted and acted upon.
Now, all data doesn't need to end up in the hands of the nurse or a decision support system, but someone needs to be looking at it and integrating it into work.
So the patients are taught to look for three kinds of patterns in their data. First of all, what is normal for you? The goal of home care nursing is to help a patient live as normal a life as possible and you help the patient use their home care record, use their personal health record, to understand their normal patterns of sleeping, waking, when does their pain occur, when do they get short of breath?
To recognize what is a departure from normal for them, standards of care help at this point, but they don't answer the whole process. We have to understand the person's pattern.
And finally, how do you respond to deviations in your household? Maybe it's you move and sleep on the first floor instead of going up and down the steps every day for a couple of days. Maybe you take a call to a specific clinician. But moving that into an individual's home health management is one of the goals of home nursing.
So in the case of our project, the heart care project, we're trying to look at ways to provide information tools to help patients better self-manage.
Now, I want you to move a little bit more generally about the process of monitoring health information in the home and talk for just a few minutes about our experiences with understanding: What do people do with all the health information in their households?
The eight pictures that you see here provide you with an image of the various home health information storage areas we see – cupboards and countertops; we see – it's a little difficult to tell, I'll enlarge it for you later, a dog carrier with diabetes supplies on the top; we see file cabinets and bookshelves.
The personal health record is stored, tucked away, laid out and posted all over the household. So what we think that is a single document is actually lots of little pieces of paper – brochures, scraps of material – that were handed out to the individual, and lay people know what to do with these.
Now, it's quite idiosyncratic what they do, but they develop fairly stable habits and they tend to be fairly effective for most people. Now, most of you are thinking about that list inside your cupboard of when does immunization need to be given next, or when was my last dental clinic, or perhaps you're thinking about those X-rays that you didn't know what to do so you stuck them in the basement. We all have health information in our home that we organize in some way.
So we're not launching into these people's lives with something brand new. As we try to bring information technologies to help, personal health records to assist people, we have to build on what they're already doing that's successful.
This, as I said, is the most common health information management device in the home, calendars. And to the extent these calendars become useful in people's lives and able to communicate across multiple platforms whether it's an electronic calendar that can send messages or a paper calendar that can be harried, the calendar becomes increasingly helpful.
But what we find for individuals who have complex health problems is they tend to have health information management centers that tend to be located around where they are also storing the objects necessary to manage their health problem.
In the picture you see in front of you, you'll notice that this appears to be the home of a person who has diabetes. There's a syringe box, what appears to a notebook and pen, some supplies for testing blood sugar. You'll also note that this was organized on top of a box. There's cereal boxes, shampoo, we think there's some Crackerjack or cluster candy in the background, and then label "pet porter" is right across the front of this.
Inside this pet porter are two Rottweilers who are not friendly. And when you think of personal health information management in the home or where is someone putting a personal health record, I want this picture to come back to your mind because it is not necessary in a flat, clean surface protected from intrusion but rather it's in the midst of someone's everyday life.
And it works for them. I've learned – we can't get them to put computers on top of pet porters. They won't let us; they're already busy.
Through these different studies, we've begun to understand what constitutes what we call a personal health record system. It's not a record; it's a record system.
First, there's something that assists with self-monitoring.
Next, we have something that assists with communication. It may be because it affords immediate interaction. It may be because it prepares a person for talking to someone in the next visit.
Third, there is some content of clinical records, although as we talk to patients more and more, they are most interested in remembering who they saw and what that person said rather than actually having a laboratory result of a specific encounter.
So, clinical records are a bit broader in the patients' minds than they are in our minds.
And finally, the personal health records system needs to have some type of decision support. Now, very often it's turning to a spouse to say, well, dear, what do you think I should do about this?
But other kinds of decision support could be possible within personal health record system structures, both those that would be free-standing in the home, guidelines and books that we're used to, as well as those that might be Internet-based and a little more focused than the 1.2 million hits that Dave was talking about earlier.
I want to show you briefly how we're beginning to envision this in a new project now. Bringing you back to the heart project, we are building within the Aurora system an interface that will be used both by patients and their home care nurses to be an integrating source of some of the electronic information that will be available or will be entered in by the patient.
And here, this particular slide depicts four important aspects of it.
First, note that there will be a place for self-assessment – how do you feel today? – importantly because our patients with congestive heart failure need to give us daily updates and we will be prompting them for particular symptoms, not broad-based health histories every day but very focused ones.
Notice the traffic light image at the lower left hand side. That's a clue to the patient what status they are in. In out congestive heart failure protocols, we have a very clear system of what actions should be taken if you're at a red level, a yellow level or a green level.
So the purpose of our interface in part is to remind the patient where they are so they can begin to take action. Remember, the overall goal here is to support independence.
We have opportunities for accessing additional information, particularly coaching information, about managing congestive heart failure at home in the upper left hand corners and you'll see contact information is presented.
In general, though, we have had some conversations with our nurses to find out where they see this level of focus in personal health management in their practice with patients. And earlier, Dave mentioned, was there a concern that patients would show up with lots more information or be lots more time consuming?
Nurses find that patients without information call a lot, and so presently, without giving them information, they find that the patients are calling and asking to have things resolved that require the nurse to call back to the patient. So having a way to push information into the patient's home might be particularly helpful.
They are worried that the nurse could experience email overload from the patient. I can tell you from the studies that I've read and reviewed over the last 10 years, the email overload that clinicians are fearful of has not appeared in any sector of this country. It may be somewhere that we're unaware of yet, but I don't think anyone's actually seen it.
A key challenge is that not all patients are accurate with self-report, and this becomes very important as we think about designing personal health record tools with different levels of, if you will, trustability built into them. Some patients truly don't understand how precise their weight needs to be, for example, so they'll report it in pound increments as opposed to half-pound or quarter-pound increments.
So there is a lack of trustworthiness, not because the patient is trying to be deceptive but because their level of precision isn't as strong.
In other cases, though, if we're going to engage a patient in a personal health record, we have to help them be aware of themselves in a way that is accepting. So it's not simply asking a person to tell you how they're feeling but to get themselves comfortable in knowing how to make those appraisals for themselves.
Finally, the nurses are worried that even in spite of giving patients information through a personal health record interface like we're designing or through some advice brochure that they've provided, patients still continue to have negative events even if they know what should be done.
And the challenge here then is to find out what motivates a person to participate in their health care better and how to deal with the individual who despite information may not act in the way we would like.
Nurses are not worried, at least in the congestive heart failure practice, nurses that we work with are not worried, first of all, that patients will get worried about the wrong things. So early in my work, people would say, oh, my God, you're going to tell the patient about the disease of the month and they're going to immediately have all the symptoms of that disease. That doesn't happen in patients and the nurses are seeing the patients really calibrate themselves well.
Patients know when to call and when not to call. But it usually takes one or two bad events to get them clear. When should I make the referral to the doctor? When does the physician need to know that my values are so far out of range?
And nurses believe that patients do pay attention; they do not ignore the recommendations on their action sheets. So patients are trusted actors in this process of health and health care.
We have a number of other observations that I'd be happy to share with you and I'm going just direct you to our website at the health systems group at the Industrial Engineering Department, University of Wisconsin.
For the last five years, your tax dollars as well as some foundation funds have provided us with a good environment for studying this.
Thank you very much for your time.
DR. COHN: Well, thank you both very much. Actually, Pat – a point of some clarification: Are you part of the Industrial Engineering Department?
MS. BRENNAN: Yes.
DR. COHN: Oh.
MS. BRENNAN: I'm a nurse and an industrial engineer.
DR. COHN: Okay.
MS. BRENNAN: And so no one knows where my office is.
[Laughter.]
DR. COHN: I can imagine. Thank you for that clarification.
Thank you both for some very interesting testimony. Questions from the Subcommittee? Steve?
Questions, Answers and Comments
MR. STEINDEL: I have a very quick personal question for you just to corroborate some of your information. When were you in my parents' home?
[Laughter.]
MR. STEINDEL: The whole thing! I mean, yes – that was dead-on about what you see.
MS. BRENNAN: If I can actually tell you two brief comments about that.
One of them is that investigating health information in the home opens a very, very private experience in people's lives. I think they would actually rather show you their checkbook than where they keep their health data.
So actually I wanted to speak with a great deal of respect and gratitude to the people who have let us into their houses to see these things.
Secondly, as all the researchers, I let my house be the first study house. And as the team came to look at my house, my son stood in the doorway and said, "That's private – they're not allowed in here to see those things." So even young children get the idea that there's something private about this health data.
DR. LUMPKIN: Simon?
DR. COHN: Yes, John.
DR. LUMPKIN: Thank you. I'd like to thank – is it Pat? --
MS. BRENNAN: Patti.
DR. COHN: Yes, Patti Brennan.
DR. LUMPKIN: -- yes, for the presentation that you did. It was really one of the clearest, non-jargony descriptions that I've seen of the personal health dimension, not just the personal health record.
MS. BRENNAN: Thank you.
DR. LUMPKIN: And I just wanted to make a comment. First, I'd like a copy of that picture of the diabetes case on top of the dog transport, because there's another analogy there, and that is that with the two Rottweilers in there, that personal health dimension is protected.
[Laughter.]
DR. LUMPKIN: And I think that that's important for us to realize since some of the earlier communications, how important it is for people to feel that not only is it someplace they know it is, it's understandable to them in ways and means that they understand, but also that it's protected.
So thank you so much for the presentation.
DR. COHN: Yes, and John, I think I should mention that you really missed David Williams's presentation. He gave I think what may get the prize of the year for the most innovative use of PowerPoint, so if there's some way for us to send you that, I think that we all think that at the end of the year we may reflect back and send him a letter, a tribute, for that, so –
DR. LUMPKIN: Unfortunately, it didn't come across the Net very well.
DR. COHN: Yes, I could imaging.
Now, John Paul has a question, and then Cynthia Baur, Mary Jo and Kathleen Fyffe.
MR. HOUSTON: I'm first?
DR. COHN: Yes, John Paul, you're first.
MR. HOUSTON: A question to Ms. Brennan. Have you thought about it – has Aurora tried to integrate like medication administration functionalities via the Web? I know there's some products out that actually will remind people through a device actually to take their medications.
MS. BRENNAN: Do you want to talk about that a little bit, what we're thinking about that?
MS. BURKE: Hi, I'm Laura Burke from Aurora Health Care. And we're right in the design phase right now, and what we're still doing is going in and talking to the patients about how likely would they want to be using something like that. So we're leaving our options open.
MS. BRENNAN: Right. We found that, like everyone else, coming up with the medication list is more challenging than we thought. We were going to try to take a direct feed off their clinical record, which should be the accurate one, right? And then that overwhelmed patients.
We also found that the reminder issues are less informational, more behavioral, so it may be, as you're suggesting, that an Internet prompting to a device – your refrigerator that beeps before you open it to make sure you've taken your medication might be actually a better strategy for this. But we don't know how serious a problem of forgetting or lack of timing is.
MR. HOUSTON: sort of the second part of my question was, because I know from reading your nurse's issues, it sounds like it might not be one of the big ones, but I heard this in other areas that this is being sort of a key issue with in home care, is trying to make sure they appropriate administer medications.
MS. BRENNAN: In our study of the home care to study how people manage health information in the home, we found that there's usually one information manager who coordinates the household. And when we asked them what kind of information management challenges they ran into, the medication related ones tended to be more related to what Dave had mentioned, drug interactions with other things, so they are not sure of, or they wonder about, or they didn't consider that there might be an interaction. So there is an alerting problem that goes on there.
And remembering to reorder, not so much the logistics of reordering but remembering before it's 6 a.m. and you go to take your Haldol or your anti-hypertensive and there's none left. So it's the sort of three days before it's due reminder.
MR. HOUSTON: One other question for Colonel Williams.
Is there going to be a desire or a push to require military staff to use TRICARE Online? You said you had 220,000 people enrolled. I think that's a fairly – it's what? Ten percent of the active duty force?
LT. COL. WILLIAMS: Oh, less than that. I don't know if this is on or not, but for active duty, we want to have it convenience for them, have something out there that they wish to do it.
Right now, there is no requirement for them to use TRICARE Online but there are requirements in the big Army for you to use AKO for certain aspects. So I suspect once that behavior starts changing that the go to place for information will be the Internet, and the go to place for your health care information and interact will be the TRICARE Online.
Service portals now we're working out so there's a single sign-on, that when you go to your AKO, Army Knowledge Online, for your personnel information, and you pay, and other information, you hit TRICARE Online and now you're into your medical information.
DR. COHN: Okay. Cynthia?
MS. BAUR: Yes, I just have a quick question for David on the operational vision slide. Above the line on the open side, I thought I saw on the list a patient health record as part of the health resources. Was that right?
LT. COL. WILLIAMS: Yes. It shouldn't be on the open side; that would be on the secure side.
MS. BAUR: Oh, okay.
LT. COL. WILLIAMS: But there'd be resources that are on the open side. There's 18 million pages of content we expose that you can look at before logging in. We're just trying to push that information out as easy as possible.
MS. BAUR: So the educational resources and the calculators, all that still is above the line? That's right? That's in the open side?
LT. COL. WILLIAMS: Yes, it is.
MS. BAUR: It's just the patient health record is not.
LT. COL. WILLIAMS: Absolutely. And from there, over time, we'll pull it behind, but we're trying to have some opportunities to pull people in to start changing the behaviors.
MS. BAUR: Thank you.
DR. COHN: Okay. Mary Jo?
MS. DEERING: I want to thank you both. It was really very, very helpful.
And I wanted to get back to an area that Patti addressed squarely but I think Col. Williams, you began to hint at it, and it has to do with really understanding the user's needs and preferences and values and priorities, and clearly that's the essence of what you are doing.
But I wanted to first give Patti the opportunity to elaborate about why – I mean, you clearly feel this is important; some people do. But on the other hand, a lot of design does not begin with the actual patient's preferences. And I wonder if you could just elaborate a little bit on why you are going to deeply into the area of the patient's actual lives and uses of it and how you think that is going to strengthen the end product.
And then I wanted to ask Colonel Williams, who was a user, to what extent are you actually doing more than just a little bit of focus testing? How are you getting, seeking, incorporating actual user's preferences into either specific functionality or the sequencing of what you're doing.
MS. BRENNAN: I'd like to believe that my career was as organized as Mary Jo just depicted. I have to tell you that we spent 10 years taking computers, dropping them in people's kitchens, saying, what do you think? Oh, they look fine. And then thought, gee, we should have gone to see what was going on before we put the computer in.
So it really truly was an after the fact thought that we better go look at what people are doing without computers. And thanks from support from the Intel Corporation and a tremendous partnership from the Dodge Jefferson Healthier Communities Partnership, which is our community partner in this project, we were able to get into 50 houses.
It took two to three hours per household. We would draw pictures. We sent a team of two people and we took photographs. That did scare some people, by the way – I got a couple of phone calls. "Someone was in my mother's house yesterday taking pictures. What were they there for?"
And so trying to explain it was for a health assessment didn't quite come through; it was unfamiliar.
I would say, Mary Jo, that the acceptability without impact of the early consumer health informatics innovation is probably what's pushing us this hard, that is, that patients do better when you pay attention to them. And if you give them tools, they will use them.
But we haven't seen the health outcomes that we had hoped, and we think part of it may be because there's a bit of a mismatch. For example, as Mr. Houston's question about the reminders for medication – we perhaps were giving people the wrong content at the wrong time in the wrong format.
And what we've learned, for example, is that keeping track of things chronologically is incredibly important in these people's lives. And the more people in your house that are sick or have health problems, the more complicated that is.
So, having some way to understand information over time is critical. We never thought of that before. Understanding variability and information needs over time – that is, a newly diagnosed patient really doesn't want to know everything about etiology; they want to know: When will the pain go away? When can I walk? How soon can I shower? And when can I have sex again? They don't want to ask the doctor the last two.
So we know that people have things they want to know at different points in time that they don't want to hear from a health professional.
So our process of understanding people across time is probably what's convinced us that we'd better keep listening to them across time.
Extracting those into efficient design recommendations is really quite difficult. One of my doctoral students is doing her dissertation work on this very issue: How do you effectively send a human factors team into a home, figure out what's going on, and bring design guidance out of it in a way that doesn't require us to visit 300 million households?
But what we do know is a couple of principles, iterative: Go to a couple of households, talk to a couple of people, go to a few more households, get feedback. So we get reaction.
Secondly, these concepts resonate with most people, and so finding not so much people who agree with the concepts but people who can find the flaws, that is, look for a deconstruction of them, has been helpful to us.
And the third point is that the technology is cheap but the content is not. And so we really want to minimize the investment we have to make in building new content to only build new content when it's absolutely necessary, which is why that much design is needed.
LT. COL. WILLIAMS: Our position here is that function determines form. The requirements from the end users and the stakeholders are what drives our systems.
And when we say "stakeholders," it's everyone from the end user soldier up to their spouse and retirees. And the stakeholders also are the people that own the business process.
How do we do that? And I'll be happy to share our requirements development document with the group here; I think it's about a 90-page document. But it's using integrated product teams to pull in, constantly working with them, refining the product, delivering products requirement-wise as well as technical-wise in interim, small, deliverable, bite-size pieces so we can get constant evaluation.
From an evaluation standpoint and feedback, we get a lot of it and we try to answer it as quickly as we can. Our community is very vocal and very involved in the process.
DR. COHN: Kathleen Fyffe?
MS. FYFFE: Yes, for Colonel Williams – could you elaborate a little bit about the business partners, relationships that you have that were noted on your schematic here? You have a bubble.
LT. COL. WILLIAMS: Yes, we have several business partners. For example, the managed care that we contract out – TriWest, Humana and HealthNet. We've divided this – we call "purchased care." You're not seen within the military facility itself; you go out on TRICARE and get treated there on the commercial side. So we have those business partners.
We also consider, and I haven't to memory that slide and it changes from time, VA, DOD as partners, as well as National Library of Medicine and other government entities.
MS. FYFFE: One more question. The reservists who go on active duty get care and military treatment facilities. Has there been a beginning of a demand at all for those records to be electronic in order to take them to their civilian physicians? Or how does that work, other than handed paper information or fax information?
LT. COL. WILLIAMS: We're still paper driven for that component when they go from active duty out to their local, commercial side, non-government. There's no silver bullet right now for that, unfortunately.
DR. COHN: Gene?
MR. STEUERLE: Just more a comment than a question. The chart on comparing of TOL and other no-show rates –
LT. COL. WILLIAMS: Yes.
MR. STEUERLE: -- technically you could have in the way it's presented something that's called an identification problem in statistics. That is, if the people who get on the computer to re-book their appointments are people who are pretty literate and the type of people who would reschedule anyway. Then you may not be proving that you've actually reduced your no-show rate.
There are statistical ways to do it. You need to have a way to see whether the overall average drops. You see what I mean? They would be the people who would be most likely to reschedule anyway and now they just sort themselves and by sorting themselves by getting on the computer – I'm presuming that's probably not what happened entirely here, but some of that may be there.
LT. COL. WILLIAMS: No, I agree, the jury is out for this.
MR. STEUERLE: I think there's statistical ways of actually getting at that issue, so –
LT. COL. WILLIAMS: Oh, well, I'd be very interested.
MR. STEUERLE: It's mainly by comparing to what rate you might have had beforehand versus afterwards. You may have such a small sample that you don't know.
But the question for you is more on a broader front, which is: As you've gone towards this system, what has been the reaction of your providers? I mean, had you increased, for instance – I presume you have – the computerization of what they have to do, what they have to put on line? Perhaps, I don't know, the number of people who have to transcribe what the doctor does to make sure that it's compatible in the system.
And has there been a reaction here that's been positive, negative or otherwise? And what further steps along these lines – at what point do you hit a line where you might hit a barrier here?
LT. COL. WILLIAMS: Well, right now, the areas that we've had issues with are, for example, appointing. What we've done is gone down to the clinic and exposed the way they do appointing, especially late on Fridays and early on Monday, exposed to the world now for people to see. It required some work at the clinic to readjust their schedule and have it exposed.
So we got initial push-back from the clinics specifically and some of the providers in terms of exposing when they saw patients because that was like the most guarded secret in the United States military, it appeared, when providers saw patients. Now it is exposed. It just required some education and that they still have control, but it is exposed.
It's probably pretty transparent right now from a provider standpoint that TRICARE Online is there except that they constructed a Web page with their information favorite website. Pediatricians would have a Web page in that clinic that they would build. We have wizards that are easy to do. And they would put down their selected, trusted websites that they would know and put out.
Other than that, right now in terms of the clinical information they put in, that doesn't roll over to the patient yet. All right, benefit for the provider now is that they can log in on TRICARE Online anywhere in the world and go into their electronic health record and see their patient information on CHS-2 and CHS-1.
MR. STEUERLE: Is it everything in the personal health record?
LT. COL. WILLIAMS: Actually, the way it is set up right now, the personal health record does not communicate to our system, so the only person that can release that information is the owner of that personal health record. So the provider would log on and see the super-set of information on CHS-1 and CHS-2. They wouldn't see the information that was put in manually by the patient in the personal health record right now.
MR. STEUERLE: I'm sorry – excuse me; I actually misstated. It doesn't include everything in the actual medical record of the doctor?
LT. COL. WILLIAMS: It includes everything that they placed into CHS-1, which is a legacy system right now. In the future, it will open up to include the super-set of information placed in our EHR, the super-set of information until we grow out of the paper over years.
DR. COHN: Okay, Steve?
MR. STEINDEL: Yes, I'd like both of you to comment on an observation that I'm going to sort of make right now.
And what I'm struck by is that there appears to be a difference in technical sophistication between the two populations you two are dealing with. I think when we look at the news and we see people putting up personal satellite links so they can get Internet connection from the deserts of Iraq versus Rottweilers providing role-based authentification –
[Laughter.]
MR. STEINDEL: -- to personal health records and –
MS. BRENNAN: It might be aroma-based!
[Laughter.]
MR. STEINDEL: -- and one of the roles that this Workgroup is supposed to do is make recommendations on what we should be saying about personal health records. I'd like the two of you to comment on what we should do with these diverse populations and both groups are probably going to be using more and more of these.
LT. COL. WILLIAMS: We're very interested on the issue because we span the entire socioeconomic and age group of the population we serve.
That's why we were interested with working with Conemaugh; it was a Congressional effort. How do you change the behaviors of the seniors, especially in a rural, underserved area? They go to their senior centers and that's where they hang out and that's where they have extended facilities from the hospitals now – you can get your lab done and that information.
So, understanding that they have poor communication, they don't have computers, we're hoping that to touch those people at those centers themselves and hopefully gain some information on how we can expand whatever we collect from there from this particular study out to meet the other demand.
But in terms of age, it's kind of difficult to predict who is on the other side of the email. Some retirees, our elderly population, really have wed themselves to the Internet. We still have some rather young soldiers that come on that the Internet, they have not led themselves to, so –
Proportionally, the younger you are, the higher the probability we see. But there are still the older population that have really brought themselves to the Internet.
MS. BRENNAN: Our experience is that age is not as much of an issue as motivation for a value added part of their lives. And so to the extent that any technology, whether it's a calendar hanging on the wall or a notebook on top of the Rottweiler or a keyboard is used by a person is going to be proportionate to some value that they're getting back from that particular.
I urge you to keep in mind we're talking about systems of personal health records, not a single personal health record. I think we need to abandon the idea that there will be one and we will all have that one and we'll know what it looks like and where it's stored, but rather that we need to think about, if you will – where's Bill? – infrastructure in the household and infrastructure in the person's life.
In our experiences, some of the personal health information was managed across several houses. Mom lived here, daughter next door, and the granddaughter two doors down, and the daughter was the main manager for three houses.
So if you think about information management that transcends households, perhaps transcends family relationships.
I'm going to go back to Mr. Houston's question earlier to make a plea for your recommendations to include investment in the study of advanced technologies as an age personal health information management. If we had RFID on every single brochure that was handed out in every single clinic, the patient wouldn't need to worry about having a computer record. The brochure itself could become actively part of the system.
If we had effective bar coding, and effective integrated bar coding systems within our grocery stores and our refrigerators, we could actually have nutritional management done without somebody sitting down and typing it.
So I'm going to plead for personal health records to not be words and numbers that may be in a computer but actually might be sensors and environmental monitors and some of the integrated information that maybe will come out of Dave's group – I mean the other groups he worked with – to bring us aware households that aid in health information management.
DR. COHN: I have a question, but Mary Jo, did you have a question or comment?
MS. DEERING: Follow-up on that.
DR. COHN: A follow-up, sure, and then I have a question that's related.
MS. DEERING: That paints the picture of a whole new concept of what represents information.
MS. BRENNAN: Yes.
MS. DEERING: The National Committee on Vital and Health Statistics and the organizations, many of which are represented in this room that are working usually on their own dime and nickel and overtime so hard on the electronic health record and other data standards issue, are working within a closed universe of what constitutes health information, your comments are suggesting to me.
MS. BRENNAN: Yes.
MS. DEERING: And so it seems to me that there's a challenge before us. Those people who are investing so much of their personal and professional time in trying to move this field forward, how can those efforts be broadened or how can these other forms of information that may, some suspect – I'm sure even the clinicians would say so – may be as important to health care outcomes and improvement be included in data standards efforts, EHR definitional efforts, interoperability efforts?
That's a huge question and I'll just sort of let it float out there, but do you have any reaction to that?
MS. BRENNAN: A great appreciation for the fact that you recognize this is what I'm saying. With all due respect – Stan Huff sitting in the room makes me nervous with your work on terminology – these are important and I'm not suggesting that structured languages are not necessary. They're incredibly necessary.
But in the life of a person who is not used to structured interactions, not engaged in formal communication, but still needs to intersect with that, the kind of bridge building that is going on between thinking about formal terminologies in health care and consumer vocabularies needs to be pushed back to think about other kinds of data besides terms and words – images, movement, sound – and I realize this is a speculative request and it will not be the low-hanging fruit, but it will help us to begin to think about: How do we integrate over time and space the content that we want to know about people? What doesn't have to be put into a word? You know, we use words because we can't take pictures of everything.
But one last piece I would like to also ask is that we consider just what does need to be formally represented and what doesn't.
The personal health record does not need to be a very large bag that everything gets stuffed into for life and we drag it behind us but rather it might be thought as a distributed resource that some things are stored in a secure coal box up in New York and the rest of it is with me in my little pocket.
Think about personal health records as having a modular or component concept that will allow us to think about what's relevant to me. How do I have with me at the time that I need it what I need to know about myself? And then have a pathway back to the other things, as opposed to something that I keep accumulating more and more of.
DR. COHN: Actually, I have a question. Then Mike Fitzmaurice is going to follow up and I see Jeff is already raising his hand.
I think I'm sort of looking at all this sort of struggling with the terminology of this stuff, and we described earlier today that there's fundamental taxonomy issues about, well, what is personal health record versus personal health record system versus, well, what do we call this thing – is it tethered, untethered, is it pieces of functionality? I mean, I don't even know how to describe all the pieces.
But listening to what you're talking about also to some extent, thinking a little bit about what Colonel Williams was sort of commenting about about the use of your system, obviously in the world of TRICARE Online you have a lot of functionality and then you have one little piece called personal health record.
And yet everything else probably, if we were to think about it broadly, is really personal health record system or personal health dimension or something sort of like that.
I mean, once again I don't want to get boggled in the terminology. But I'm sort of sitting here struggling a little bit as I look at the usage, and we may from others today and in the future, wondering what part of this is the most valuable. And obviously some of it may relate to the population you're dealing with.
But in everything I've heard today, I sort of am going – and David, help me with this – I'm sort of seeing in your numbers, and you're dealing with obviously a large population, appointment making seems to be the most exciting thing that's probably happening in your universe at this point.
And, yes, I've got some people doing personal health records but not many. And it's growing, but it's growing very slowly.
Now, obviously one can make the case for chronic disease management, which, Patti, is an area that you've been really talking about, that really having that depth of information really becomes the valuable piece.
But I guess as I'm listening to all this stuff and wondering – you know, we tend to think about comprehensive functionality and I'm actually wondering if this is really a bunch of pieces that are really sort of assembled and disassembled at will for various business cases and in reality personal health records may be late after some of these other things get implemented.
I mean, David, can you help me with this one?
LT. COL. WILLIAMS: Well, I think you've hit the nail on the head that I think we're wed – I know we're wed – to the personal health record, as the VA is. Unfortunately, in some cases we run it like a business. Return on investment for appointing – we can go through all the reasons that we do this – but the return on investment for appointing was really substantial.
From that appointing, we were able to hang off clinical applications that we felt clearly was needed, but that gave us the business case to put out an enterprise wide portal. Once the enterprise wide portal is out there, there were other applications and other systems could leverage that system very well.
And we talked about the providers getting access to the CHS-2 and CHS-1 clinical information.
It was just the strategy we had to get the system up, running, and from that, the whole concept of the TRICARE Online is now that we have a common portal; we can put in applications.
At that point, the beneficiaries and then the stakeholders are pushing for certain applications. And one of them is the personal health record. And that's, usually as I said, in the top four that requested that one, one that communicates to the electronic health record.
MS. BRENNAN: The single most important recording tool that our respondents in the home health study wanted was just a list of where they were last and for the last five years – which doctors did they see.
To the extent that the personal health record is viewed as a derivative of a clinical or electronic patient record, its value is going to be driven by the value of information in health care which I submit to you, my discipline has yet to come forward and show is really all as valuable as we believe it is.
So we want all this. We take long histories. We take them repeatedly to patients. And then we ignore them and go on and do stuff. We do have to think about what is the value of information in health care?
But, remember that the personal health record has value in people's lives beyond the industry of health care. So, Simon, I think the answer to your question in part is going to come from the perspective of the stakeholder you're asking.
I like your modular approach. I want the Quicken for health care so that if I'm not worried annuities this year, I don't worry about the annuity part of the program. But if I am worried about getting through a pregnancy or if I'm trying to get myself onto a weight management scheme, then I get that part of the program and I spend time with it.
It will not provide us with a lifelong clinical history that our genomicists want us to be able to provide to them or that our clinical docs would like us to be able in an integrated way. But it might actually get me through this week's health concern.
DR. COHN: Thank you. Mike Fitzmaurice?
DR. FITZMAURICE: I picked up on your chart, too, on the no-show rate because if it were true – the question I was going to ask you is: Is this part of the business case or provider wanting to adopt a scheduling as part of the electronic health record that a provider's no-show rate would go down?
And I found the same, that as you look at this early, it's talking about just two different groups during the same time period. It doesn't talk about it before and after.
Do you have a sense that there is a before and after and that the no-show rate overall has gone down?
LT. COL. WILLIAMS: The no-show rate historically for the MHS, and I don't have the figures in front of me but I'll be happy to present them, it was about 7.5 percent. We have such a small end on the no-show rate now. We're not affecting the overall MHS rate enterprise-wide. But it historically runs about 7.5 percent.
DR. FITZMAURICE: Okay. And the second question to Patti. In looking at all these households, you probably learned from one to the other that at the end you probably could say, you know, per households, if they had just one single improvement, that would make the biggest difference in their ability to store and to retrieve information.
It might be a big orange grocery sack, might be a big orange box, might be just sheets of paper or stickies beside the scale, beside the refrigerator.
What is your sense of, if you could go back to these households, what maybe one or two things would you tell them that would improve their ability to store and retrieve information? Or does what they have work for them and they would have to change an awful lot to improve?
MS. BRENNAN: Is there a chance you're reviewing my paper right now?
[Laughter.]
MS. BRENNAN: We have a paper under review that describes the storage strategies used in the households, that people store information based on their sense of how secure and how sensitive it is, their perceived value and need for it, and how quickly they will get it.
So some things are stored in the wallet – I may need it momentarily, just in time. Some things are stored in the basement – just because I don't know what to do with it so I stuck down the basement. Some things are stored just in case I keep my kids' immunization records although I know I can call the doc and get them but it's in case I need them, I got them right there.
So people do develop theses storage strategies. And what I would do is not actually tell them which one to use, but make them more aware of the ones they are using and determine if they're as effective for them as they need them to be.
My goal is to get technology involved in this in a very different way, and so I'm very excited about a project that I heard of that's going on in the University of Washington – Keeping Things Found Group. And it's a bag remembers what's in it and what's been taken out of it.
And essentially imagine RFID and all the objectives in your bag and as you put them in or take them out, the bag keeps its own inventory.
So that idea, I think, may be coming along as a good storage solution for us.
DR. COHN: We all may need that as we get a little older.
MS. BRENNAN: Yes, yes!
DR. COHN: I guess I'll speak for myself on that one.
Well, listen, I want to thank you.
MS. BRENNAN: Jeff –
DR. COHN: Oh, Jeff – I'm sorry, please. Final question.
MR. BLAIR: Not a problem. One of the things that I always appreciate is when I start to learn something new and the stereotypes that I've held have shattered. I used to call them prejudices and biases, but my wife told me it's politically incorrect to refer to them as prejudices and biases and I should just call them stereotype.
So among them are: Who are going to be the early adopters of personal health records? And my stereotype tended to be that it was going to be the folks that were literate, on information systems, and well-educated, and either mothers keeping the records for their children or their grandchildren or – in any event, and I don't know to the degree that the rest of the Workgroup shares my stereotype but the testimony before lunch, and Patti, your testimony, I think have caused me to consider that maybe the early adopters and maybe the most frequent users of personal health records might turn out to be a different population.
Before lunch, it was articulated that folks that either had chronic conditions or were elderly or retired were using personal health records to manage their care. And you pointed out that the population might include that but also might include persons with various forms of disability. And of course, the population that's elderly or chronic conditions and the persons that have disabilities may not be mutually exclusive. That begins to have a large degree of overlap.
And so if I tried to blend what I've learned from that testimony and yours, it sounds to me – I don't want to give up, I don't want to give up all of my stereotypes; I want to hold on to one of them, and that is how important it is for interoperability of data, okay?
However, I think what you've said is that we need to expand our mindset as we look at personal health records and realize that the interoperability may need to extent to mobile devices and PDAs and Smart Cards and devices –
MS. BRENNAN: Smart Soup Cans?
MR. BLAIR: -- yes, and bar codes and all of these areas, and they may be critical to the adoption and value of these to portions of our population that are very eager to use these.
Now, one other piece that we didn't hear but is also the folks that might be very poor and not computer literate and maybe even afraid of this technology, and maybe we have to look into how do we extend the benefits of this technology to that group as well?
Did I hear you?
MS. BRENNAN: Yes. May I comment on that for a minute, Simon? Thank you.
Yes, I like the way you heard what I thought I was saying. I want to add one other stakeholder group to your list, and that is what we might call the "information chauffeur." In two-thirds of our households, there was a person whose family job it was to manage the household's health information.
So as we build websites or personal health records thinking that the sick person is going to take care of this himself, we need to remember it might be a spouse or a daughter or a family friend who's actually the real user of the personal health record, not the person who it's reflecting, but the person who's actually using. Thank you.
DR. COHN: Okay. Well, with that, I want to thank you both very much for a very interesting session. I'm going to give everybody about a 10-minute break, Mary Jo? Yes, let's give everybody a 10-minute stretch break and we'll come back in 10 minutes and get started.
[Break begins at 2:33 p.m. and meeting resumes at 2;46 p.m.]
DR. COHN: Okay, would everyone please be seated? We're going to get started here in just a minute.
Dr. Wiesenthal, are you on the line?
DR. WIESENTHAL: I am.
DR. COHN: Okay, good. We're just getting everybody seated here.
DR. WIESENTHAL: Okay. By the way, Simon, I did review that other document, so you could see, when you have
a chance, some suggestions I added.
DR. COHN: Okay, well, we'll talk about that. I just want to remind everybody that we are live on the Internet.
First of all, I just want to remind everyone, and sort of once again publicly disclose. Now, first of all, Andy, much to my surprise, I'm chairing this session. Dr. Lumpkin is calling in, but had an injury while skiing over the holidays.
DR. WIESENTHAL: He did that before?
DR. COHN: Sorry, Dr. Wiesenthal?
DR. WIESENTHAL: Maybe I'm remembering something else.
DR. COHN: Okay. Well, anyway, I believe he is on the line.
DR. WIESENTHAL: I think that's only the first time. Oh, okay – I was going to admonish him to wear a helmet or some other form of bracing device but –
DR. LUMPKIN: After my years in the emergency department, I do wear a helmet that didn't help my back, though.
DR. WIESENTHAL: Oh, I'm sorry.
DR. COHN: But anyway, I just want to publicly disclose both the first presenter and I work for Kaiser Permanente and are colleagues, and so I just wanted to make sure everybody realizes that.
Now, the panel has evolved somewhat, and Dr. Wiesenthal is actually going to be the first presenter. David Kibbe, I think, is not available for this panel. And then Catherine Liberlies I believe is ill today and will be back tomorrow morning. So we have Dr. Wiesenthal beginning, James Magiera as our second presenter, from the VA, and finally Peter Basch from MedStar.
So, with that, Andy, we actually have your presentation both in paper form and up on the screen.
DR. WIESENTHAL: And I have it on my screen.
DR. COHN: Well, hey then, we're all set.
DR. WIESENTHAL: We're all set.
DR. COHN: Please.
DR. WIESENTHAL: So I'm not sure who is managing the slides, but if they would proceed to the next one, that would be great.
DR. COHN: Okay, so you'd like to go to the –
DR. WIESENTHAL: Yes. And I can't drive it from here; you were driving it from there. But I'm seeing what you're seeing.
DR. WIESENTHAL: So I wanted to spend a couple of minutes orienting everyone to what Kaiser Permanente is because I found that it actually matters and not everybody is operating from the same level of understanding, and then talk about what our project, which we call KP HealthConnect, is and then give some answers to the questions that I was posed that I think will help inform the discussion.
So KP is a bi-directionally exclusive partnership of the Kaiser Foundation Health Plan and Hospitals and the Permanente Medical Groups. Next slide, please.
It's got 8.3 million members, most of them in California, but certainly plenty elsewhere. My region, before I joined the national umbrella organization for the Permanente Medical Groups, was Colorado and currently there, for example, it's got 400,000 members in Colorado.
And you see the numbers, large numbers, of employees and physicians. Those physicians are all members of Permanente Medical Groups, and what that means is that they only care for Kaiser members and Kaiser members only go see them.
We own and operate 30 hospitals primarily in California; there is one each in Portland, Oregon, and Honolulu, Hawaii. We also have arrangements with community hospitals in all of the other places where we have operations.
As you see, a large number of medical offices – we do business across the country in various places, and our annual operating revenue is on the order of $27 billion. Next slide, please.
The Health and Hospitals organization is a single, nation, not-for-profit entity with operations in those nine states and the District of Columbia. It develops our insurance products, markets, prices, enrolls members.
By and large, it owns and operates the facilities that we own and operate with some exceptions and employs all those hundreds of thousands of people with the exception of the physicians and in most cases physician extenders like PAs and nurse practitioners. Next slide, please.
The Medical Groups are separate companies. They are self-governing and they're multi-specialty group practices. The smallest of them is on the order of 200 some-odd doctors that's in our Ohio region, the Ohio Permanente Medical Group, and the largest in Northern California, the original Permanente Medical Group. And essentially these comprise physicians from all medical specialties and sub-specialties. Next slide, please.
So, what are we doing? And in our context, what's a personal health record, or PHR?
We are in the middle, really, of a multi-year deployment of an electronic health record system so that includes ambulatory health records and where we can control it, where we own and operate the hospital, inpatient health record systems and what we call a "practice management system," and that includes scheduling, registration, ADT in the hospital, billing, claims, and also a significant Web portal, which I'll get to in a minute because that's the most operative part that relates to what people think of as a personal health record.
We already have a Web portal. For those of you who are Kaiser Permanente members I hope know this; if none of you are, you can still access the public parts of the portal by going to kaiserpermanente.org, one word, and see some of the things that our members can do, but not all of them.
What we will do put more features and functions into that existing Web portal so that the capabilities that we plan to deploy in the next year to 18 months once we have built in the electronic health system in a region will include access on the part of members to the medical problem list, all laboratory results except where prohibited by law or by other constraints, their drug profiles, immunization records, their care plans and physician instructions.
And the members will be able to create addenda to those records which will become part of their charts. They will also be able to do secure messaging back and forth between themselves and any members of their care team.
Currently, they can already schedule appointments, refill prescriptions, request advice from nurses and from their physician, access a very large health encyclopedia, and do some other business kinds of transactions. And over the next several years, as I said, members will gain a lot of access to those kinds of things that I talked about before as regions deploy the ambulatory record.
In addition, there are some Health Plan administrative functions that members will also be able to engage in, and these include things like looking at their benefits, even changing their benefit structure if that's possible within the constraints of what their employer or payer provide; following various expenditures; if they happen to have a plan that calls for deductibles, they'll be able to track how much of the deductible they have used up and so on.
Ordinarily, I don't think people would consider these kinds of capabilities part of a personal health record, but they certainly are important and make certain kinds of transactions convenient for our members.
I didn't quite understand in the questions what the meaning of the word "tethered" was, but I'm going to make an assumption in that it means it's attached and it doesn't move with the person whose personal health record it is. So our personal health record will be tethered. It's part and parcel of the entire electronic health record system.
We don't view it as a separate entity. It just presents data to the member and presents functions to our members in a way that is useful to them across the Web. Not really a free-standing entity.
And we will certainly make it possible for members to move their health data from our system to other systems via paper, and that's going to be the way of the world for the next while or electronically as interoperability becomes possible.
But there is no personal health record or PHR that can be just taken by the person anywhere they want to take it. Next slide, please.
So, some caveats. It's important for me to say that at our stage of development and deployment, there aren't any barriers to the adoption of a personal health record within Kaiser Permanente.
So what I'm going to say really represents some speculation on the state of affairs outside of a system like ours.
And the other thing that I want to emphasize is that from our perspective, the personal health record will never be a substitute for true integration of a delivery system. And I had the feeling that a lot of people have that hope for it, but these are the reasons why I think that won't be true.
There'll be some people who will take the time and make the effort that's required to aggregate all of their health information from all their care givers and enter into a personal health record or see to it that it's delivered to a personal health record, but most people will not do that.
If all care givers in a location do not participate in whatever we have been calling those local health information collaboratives that would be necessary to feed a personal health record, then nobody – none of the care givers nor the patients themselves – will have complete confidence that the personal health record has everything that it needs to have in order for somebody to make adequate medical decisions based on the information inside of it.
And even if they do participate broadly, there's a lot of maintenance and use of personal health record data that has to happen in order for it to be optimally useful. Doctors and nurses and other care givers need to use them to improve care, to gain access to information at the point of care so that they will realize that this person that's sitting in front of them, even though they're sitting in front of them because they may have an upper respiratory infection, in fact hasn't had a Pap smear or needs an influenza immunization and should have those things done, even though that's not the purpose, strictly speaking, of the visit day.
And so encouragement to do these kind of health care improvements will be necessary, and we think that that should come under the rubric of a pay-for-performance set of incentives, and the like of which is already being considered by CMS. Next slide, please.
So, again, my speculation about what the world outside of Kaiser Permanente is facing – there is, first of all, a lot of information that could populate a personal health record that's not digitized; problem are in paper – patient instructions and plans. The results of in-office testing are often just notations or paper results forms and not in any way digitized. And all of these things are vital elements to a personal health record.
There isn't yet a good infrastructure that will allow for the routine maintenance of information that physicians want to contribute, and I've got a couple of questions here, but the most important thing is that you as a doctor will need to make sure that whatever you're putting into an individual's PHR is up to date, and as you make changes to that person's care, whether you've changed their medicine, got results of a new test, have performed some sort of preventive intervention, or something, you have to put that information there.
And I asked a question here, and this to me I think will be important and one that's on the minds of a lot of physicians, is if they don't maintain a PHR, is there liability associated with that for them? And that happens at both ends of the treatment spectrum, for the one who created the data but didn't put it in and some decision was made by another doctor, does that redound to them?
And if they're a doctor relying on the accuracy of a personal health record and it turns out it was missing something very important and a decision they made turned out to harm a patient, they would have made differently had they known something different, that's important as well.
So, there need to be rules about what goes into a personal health record, what kinds of form that information takes, who should have access to it, and so on. And the infrastructure to do all these things is really not there yet.
Is there an economic basis for all of this on the part of fee-for-service physicians? It's very clear what our economic incentives are to us. Our incentives are pretty well aligned in making this go. But contributing data to a personal health record and improving the quality of care using the information in a personal health record should again be part of a pay-for-performance incentive policy that globally affects all practitioners across the country.
I think if these barriers get addressed, doctors will see that personal health records provide value to their patients and to themselves. I believe that doctors believe that quality of care improves if a full set of information is available to everybody involved when care is being rendered.
And I think that if proper reimbursement for all these activities is in place that that will insure that doctors and health care delivery systems like us allocate the appropriate time and resources to maintaining their end of the personal health record. Next slide, please.
Well, how do you address the barriers?
Digitization is one important one that I mentioned. Short-term solutions include taking what doctors have from their practice management systems and incorporating that data routinely into personal health records and that data includes things like diagnoses that they bill for, procedures that they bill for, things that they order, and so on.
But the systems that doctors use for preparing these bills for practice management are often proprietary so we're going to have to encourage the vendors of these systems to export data in vocabularies that are standardized. Simon and many of you know about these standards much better than I do.
The long-term solution is of course the widespread adoption of an electronic health record, not a single one but a series of electronic health records that can routinely feed standardized information into personal health records.
And physicians need to assume responsibility for maintaining their end of the bargain, for making sure that whatever information they have is uploaded into their patient's personal health records and that it is accurate.
But we can't hold them accountable for doing that until the software tools for that kind of export of data are routinely available to them.
To the second bullet, our large bullet on this slide, which is that doctors for the most part still practice in small settings, as we all know, and so many if not most of them can't afford to build this kind of infrastructure by themselves. They can't afford it, they don't know how.
And so various reimbursement schemes have to include some increments for system buffer acquisition maintenance. And again, targeting the physicians who demonstrate that they will improve quality, using these systems.
It's probable that hospitals and other large providers or conveners will need to host the personal health record databases within local health information infrastructures. Please excuse me for all the acronyms here, but I think they're familiar to most of you.
And finally, again, a directed at paying for improved quality, we got to reimburse folks for doing the work here and making sure that it produces the kinds of patient outcomes that we want it to address.
I think that's it.
So, again – I'm sorry – what are the benefits? Excuse me.
Patients will have access to information they need to take care of themselves. One of the physicians that I know well inside of the Permanente Medical Groups who has large responsibility patient communication and education liked to frame it this way: If you have a patient who is a very, very frequent visitor – let's say they come to see you once a week – they might spend about 500 or 600 minutes with you in the course of the year. That would be an extraordinarily highly utilizing patient.
And it probably means that they have lots of chronic problems that need to be cared for.
So they spend those 10 hours with you and the rest of the year, they're on their own; they're with themselves and their family. So most care isn't delivered by doctors and nurses and in care settings; it's delivered by the patients and their families. And they need access to information and guidance to do that care for themselves. And that's one of the important benefits of a personal health record.
Physicians and staff will be out of the loop of just simply being information brokers so that a lab result can go straight to the person who's most interested in it besides the doctor who ordered it and that's the patient. And if it's normal, then the patients can interpret that for themselves and there can be help to doing that in the context of the website where the personal health record is housed.
And if they have questions, then they can direct that to their physician so that the personal health record with decision support embedded in it will help patients use their doctors and nurses wisely, so they'll get in touch with them when those kinds of contacts can add value to the patient.
So now they know that they have peak flow and they know if they're an asthmatic what range it's supposed to be in and they know, based on an algorithm that's in place on their personal health record what they're supposed to do if it falls below that range and they know what they're supposed to if those interventions don't work for them and when to contact their doctor.
And that's a much more efficient use of health care resources that a personal health record can contribute to. And the kind of quality improvement that I've been referring to on various points during this talk.
And I will stop and see if, Simon, now or if we're to wait till others on the panel have had a chance.
DR. COHN: Yes, Andy, if it's okay with you, what we'll do is let the other two presenters present and then we can have questions. Does that work with your schedule?
DR. WIESENTHAL: Absolutely.
DR. COHN: I think our next presenter is James Magiera from the Veterans Administration.
DR. COHN: Andy, by the way, if you're on the website, you can actually see this presentation.
DR. WIESENTHAL: Yes, I'm hoping I can see it; I'm still seeing mine – there it goes!
DR. COHN: Okay, great.
AGENDA ITEM: Presentation – JAMES MAGEIRA
MR. MAGIERA: I want to introduce myself. I'm
James Mageira and I work at the VA hospital and I'm also a teacher at the VA hospital. But right off the top, I want to let you know that that is not my primary job. It's one of about six jobs.
I am technically a horticulturist and that's what I do; it's a living at the VA hospital as I teach how to grow plants to veterans in a therapeutic way.
This program that you're about to see here didn't even exist at the VA hospital. Bob, who's sitting next to me, and two other veterans that you're going to see in this little slide show that we have, we created this. There was no such thing as a veterans' computer lab in 4 Building, and 4 Building is our nursing home building.
I'm going to give you a little history of this.
Our first computer that we ever had was donated to us. It was a Commodore 64. I don't know if anyone's familiar with that – very difficult to use, wasn't it? Big floppies and everything like this. But we had it down in our greenhouse.
And I got two veterans who were interested in trying to figure this thing out. And so they started to play around it, they learned about it, and the more we learned about it, the more the word got out that we had a computer down at the greenhouse.
Within about two months, we had 15, 20, 25 veterans in a simple little class that we had going on there, and all they were doing is putting in seed list, my plant list, where we were going to deliver them to, how much fertilizer do I have left, and I think they finally got to the point where they could do "Jingle Bells" on it.
But right there and then I realized – boy, there's an awful lot of interest in computers, in technology, from our veterans.
And the next step was: How can we bring this to more veterans? And I'm really lucky that I have great director at our hospital. He is retired, and his name was Bill Conti. And he and also our chief of staff, Dr. Binus, went out on a limb with me.
I told them that if we could just get a small little room and see if we could get some computers donated to us that we could start a really nice program and have veterans come in and learn about computers.
Well, they said, go ahead and give it a try.
Well, we've grown from one computer, two computers, to now we have 50 computers. All of them are on line. By the way, before I go any further, none of this is a cost to the VA hospital, every computer that you see here, every computer that we've received, every computer that we've given out to veterans – and we've given out over 350 computers.
And the Internet access – the paper, the pencils, the tables, everything you see, even the drawing that you see there that I put on there, I did that with leftover paint kits that were donated to the veterans.
So there's no cost – none, except for the room, the lights, the heat, and for me. And I'm only really basically part-time because I still have all these other projects that I have to do.
So when you go in and see our computer lab right here, this is one of our entrances to it, and what you see right here is a kiosk that they were going to throw away. This kiosk cost, if I remember right, was well over $10,000. They brought it in, put it in our main entrance – they kept having trouble with it, blamed it for everything; we've got a virus in the hospital, it came from the kiosk. Didn't want to use it anymore. Sat in a room, no one was touching it. I asked if we could have it. Finally got to the point, yes, you can have it.
We brought it down to the computer lab. People like Bob, who is sitting next to me, and the other two veterans that you're going to see in a few minutes, tore it apart, took a look at it, and we got it running. And as you can see, it has the myhealthevet page on there; you can access it 24 hours a day, seven days a week.
We also have all kinds of health information that's on that. There's information about hospital tunnels, how to find your way around the hospital. Anything that anyone wants, we can place on there. Bob put a nice little picture on the front of it when it goes into a screensaver and has sounds of the beach going on and birds flying by. What we do is we're trying to pull people in.
A veteran walks by, they hear it; we want them to come into our lab. Somebody who's afraid of computers, we want them in there because once we get them to sit down and to get to try to use a computer, they see how easy it really is.
It's all about simplicity. I listened to all these presentations and everything and it basically comes down to, if someone's going to use this, it has to be simple. It is simple. Bob, go to the next page. I just want to show you a couple other things.
This is our lab. This is a part of our lab, and if you notice all the paintings and drawings we have on the wall, the reason I do that is because we want people to look in there. A lot of the buildings in the VA hospital are very boring – plain white, plain, you know, awful color.
So what I do is when you walk by the main tunnel and you see the veterans' computer lab, you're going to see all kinds of color. You see the spring coming, the fall and the winter; you see some handprints. You see handprints on the wall right there? Those are student volunteers who have helped me. They get to put their handprints on there to teach our veterans how to use computers, how to get on myhealthevet, and you'll see that as we go down.
So we make it a comfortable place, an easy place to come in.
And not only do we have it for our veterans, we have it for our personnel. Anyone in our hospital who wants to come to our classes can come and sit along with our veterans. So now you have employees and veterans sitting side by side, going through classes, talking to one another. It's just incredible.
We also invite family members to come in with their veterans if they want to and sit with them as we're going through some of our training classes. And we teach from real basic – I mean, if you don't know how to use a mouse, we'll teach you how to use it. Completely all the way to writing and doing Web pages. HTML – we just don't tell you how to clip and drop stuff on; we teach you how to write it.
So veterans are capable of doing this stuff, no question about it. And Bob, go to the next.
Here's a couple of more, some more of our computers. This classroom right here has 13 computers that you see here. We also have on the other side that's set up for wheelchairs, so wheelchairs can come in and also sit in on our classes.
And again, we do classes again from basic to Excel, Microsoft Word, PowerPoint. Veterans can do this. And wait till you see some of the veterans. I only have a few pictures of some of the veterans who can do this.
So they can handle this – absolutely. I've been working in the VA hospital for 35 years. I came there right out of the service and dedicated my time to our veterans.
And I've seen a lot of good programs disappear and I saw a lot of good programs come, and this is one of them. This is a great program, myhealthevet and the computer lab. Bob, go to the next one.
This is Barry, this is one of the other gentlemen that work with me and helped built this whole program. Barry is a wheelchair-bound veteran. He lives in the nursing home, right upstairs. He comes down every single day and works with us on the computers, gives classes. He's on one of the pages on myhealthevet; he's on "Forms." He was looking up a form for a veteran.
So if a veteran can't do it, there are other veterans who can help them do it. This is veterans helping veterans. How much better can that be?
And you can see there's Bob in the background and he's working on computers. We literally take the computers apart, rebuild them – they can do this. They do the health
care, because if they can rebuild computers, they can learn Excel, they can learn Access, they can do all this stuff. They certainly can do your own health care.
Here are a bunch of veterans, different age groups.
I have veterans who come in – they're from 90 years to young veterans who are coming in from Iraq and Iran. They're all working together.
I have also computers for those who are visually impaired. Again, remember, this is stuff that's not given to us by the VA. This is stuff that – are they any private industry people here? I wish there were, because I want to thank them, because everything we get is from private industries. Private hospitals who are getting rid of some of their old computers, we take them and we rebuild them and bring them into our veterans' computer lab.
We have veterans' groups who donate money to us, or computers or like the Internet access that we have right now; that all comes through donations. We get zero from the VA.
One of the things we did was really neat, is we were able to get this sign made. It was three feet by 15 feet long and we used it on the debut of myhealthevet and we put it across the road.
And we got so much publicity from that sign – people driving by, going to work, that one
day a reporter, this woman that you see there, stopped by and asked if we'd be willing to do a television show, cable show, on myhealthevet.
And the young girl who's sitting next to me right there is only 13 years old and she was a summer help student and I asked her if she would want to come with me and be on TV and help talk about myhealthevet. And the two of us spent about 35 minutes talking about myhealthevet on television.
So students are a great educational tool. They are so good at computers and they do it in a way that's easy and understandable for our veterans to learn.
There are some of my students that came in for the summer and helped me. This is at a library and we did a myhealthevet at a library and talked about how it would benefit our veterans. And the group that was there were mostly veterans' organizations and veterans themselves.
This is something new. We wanted to take this program beyond just the VA hospital. We wanted to take this program on the road. And this van is a government van, so this tells you right now that this was a difficult thing to do. This van – I had to start with the director of the hospital, or the assistant director of the hospital, through GSA and 40 other people in between.
Then I had to go through it all over again when I wanted to try to put some writing on the van. That was another issue. The writing that's on there that says "myhealthevet" and the stickers and so on are all donated. All that money was donated to put the signs and so on on the van.
We've been taking that on the road to different DAVs and American Legions and all the different veterans' groups to let them know about the myhealthevet.
I just had a meeting with Home-Based Care at our hospital and I was asking if I could take my van on the road with a clinician and try to help those veterans who do have computers and teach them how to get to myhealthevet and to also teach them how to maneuver around on it and if they had any questions, and also teach that clinician how to take over eventually so that I would be able to move on to another area.
What I'm finding when I do do a lot of the training is that the simpler, the better. And it doesn't seem to matter who I talk to about it. If you just make it simple, everyone can understand it. And that's what I do in all our classes. All our classes are very, very simple – simple words, simple language, and I've found that that's worked out the best.
The other thing that I'm finding out is a lot of family members want to come to the classes, because, like I heard earlier, a lot of family members will be doing a lot of myhealthevet and a lot of the care for their veterans and myhealthevet is designed to do that; it's allowed family members to be able to help their veterans get on that and get the information and also to be able to input information on the self-entered information section. Go to the next one.
What I also wanted to do at VA is I wanted to have an information, registration and help desk right in our main entrance of our hospital. And this is our brand new ambulance entrance for our hospital. This took IRM involvement to get into this, to get us aligned.
So this is the only computer system that runs through the hospital network system. Everything else runs through our own. We're totally separate.
All you can do is get on myhealthevet on this. But as you can see, some of the teachers are students. I get as many students involved as possible. Veterans seem to like to see a young person sitting next to them, teaching them how to use it and they just seem to be able to teach so well.
And I encourage students at high schools, if they get a chance, to do that, to help a veteran get on a computer, learn how to use computers. But this took another – from the director, from the chief of staff, and so on, just to get this into there.
So it takes more than just a good idea. My ideas don't come to light unless I get help. I have nothing. I have nothing there. It takes a director. It takes those people who are willing to go out on a limb, take a chance, have some knowledge of what's going to happen in the future – where were we going? It is going, everything on the Internet.
I mean, I'm not technically a teacher. Again, I knew nothing about computers. I learned by just going on computers and going through page by page, learning from people like Bob next to me how to fix the computer. And now I think we have one of the best programs in the VA.
This – I think you'll see on our next picture, Bob? – is one of the veterans who came down to me and he said to me, "Why can't I go on myhealthevet on the rest of the computers?" Tom – that's his name – can't use his hands.
And I says I don't know why you can't." He says, "I want to do what everyone else does. I want to be able to do that." We found a veterans' group to purchase that device that you see there, and Tom, that was over $2,000 at the time – didn't even ask, what a cost? He just said, "If you can find it, get it; we'll provide it for Tom."
Tom comes down every single day. Tom is 85 years old. He's as good as you and I are on a computer. He's tremendous. He goes on there and he can move around better than me, and he knows everything about it. So don't tell me age, you're too old, that you're not going to be able to learn it, because like I said, I have people on there who are 90 years old.
It takes the effort. Tom can come in every day if he wants to. It takes to repeat it over and over. But they do get it and they do understand it, and once they do, they don't want to get off it.
Tom – they have to bring his medication down to Tom. He doesn't want to leave! They call him to come up and he says, "Well, I'm on the computer." So they come down and give him his medication.
Any time they're looking for someone, the first place they call is the veterans' computer lab – let's see if he's down there first, because once they're in there, nobody wants to leave.
Then there's our train. On the road with myhealthevet. Get aboard! This train is in our greenhouse. Our computer lab is connected to our greenhouse.
And what I do is I take the train on the road and I set it up and it probably takes a space at the tables we're sitting here to set it all up because it's large; it's an LGB – I don't know if you're familiar with that – but it's a really large train.
And with the myhealthevet sign on it, people come around and they stop and they start asking me questions about it, and we begin to tell them about it.
We've taken this even to malls where different companies will allow us to get Internet access and we'll bring up the myhealthevet page and actually show what the page looks like and what you can do with it.
Most of the teaching and training that I do with it, I go right on the Web page live so that everyone can see exactly what it looks like, and they find that it's much easier to actually see what's actually there.
This is our brand new addition. This is our satellite computer lab. This lab we created for veterans after hours so that when we close at 3:30, 4 o'clock, veterans can come down to this lab, open it up and get on line and access myhealthevet or wherever they would like to go on the computer.
And they can use that computer till 10, 11, 12 o'clock at night, seven days a week. So if I'm not in, it's a holiday, veterans are still using our computers and still have access to myhealthevet.
You know, I've just seen so many great ideas on myhealthevet and heard so many great stories about
myhealthevet, I can't see how getting our health records could be a problem because I see veterans who really, really want to do this and I see family members also who really, really want this.
And when you sit down and teach someone how to do it, they don't find it difficult. I haven't found anyone yet that has not been able to get on myhealthevet, register, and be able to maneuver on it. And they keep coming back more and more and more.
So again, this is just a very small presentation, very simple. That's what I'm about – very simple. Plain. No special effects. Nothing. Simple. And that's what it is, I think, is the key to learning for all our veterans, especially our elderly veterans.
So if anyone has any questions, I'd be willing to try to answer them.
DR. COHN: Okay, Jim, thank you. We'll let Peter present, I think, and then we'll have a discussion after that, but thank you for the presentation. Peter, do you need to get on the computer? Okay.
AGENDA ITEM: Presentation – DR. PETER BASCH
DR. BASCH: Good afternoon. Thank you for the opportunity to address the NCVHS on this issue. And I want to say that it's a tough act to follow after watching the presentation on myhealthevet, and I was tempted after watching it to pull out my checkbook.
I didn't bring it with me, but I would like one of your cards because we are right now, this week, going through a computer upgrade and we have hundreds, perhaps thousands, of computers that I was told was going to be thrown out.
And I've always asked: Somebody must need these. So I'm glad I came today if for no other reason than to know that we might have a home for our computers that are just not powerful enough to use the new EHR that we're putting in our clinics.
Okay – who am I? I've been practicing general internal medicine in a small practice on Capitol Hill for about 23 years, changing my status from a small business owner to an employed physician about 10 years ago. I was the first user of an ambulatory EHR within my health system as well as an early adopter of patient-physician email, physician practice websites and e-prescribing.
In addition to seeing patients, which I still do about halftime, I'm also the Medical Director for eHealth for my health system. I get bored easily and serve on a lot of other functions, including Foundation for eHealth. I think the correct term is a "pre-RIO," the Maryland-DC Collaborative for Health Information Technology.
I'm also Co-Chair, along with David Kibbe, of the Physicians EHR Coalition, or PEHRC, and the Small Practice
Workgroup for HIT adoption of the eHealth Initiative.
But now for the proviso and disclaimer: I'm here today speaking as a practicing physician, and although I am informed by my service leadership on these various organizations, I have to add that the comments and viewpoints expressed today are mine alone and not necessarily those of MedStar Health, eHealth Initiative, American College of Physicians, or the Physicians EHR Coalition.
All right, Headline Number One – "Physicians Embrace the PHR."
As a practicing physician and early adopter of HIT, I've always test-marketed applications before colleagues, first in my small practice which was initially four, now seven; then in my larger, employee practice group of 70, and lastly to anyone I can corner and talk to, basically any interested physician either employed or in private practice.
And in preparation for my comments today, I presented information about the PHR to several clinicians -- this is a non-representative sample – and asked a series of questions and received these overwhelmingly positive responses:
"Well, of course, why wouldn't we do this?"
"It will not only make things better for patients, it will improve quality of practice for us."
And my favorite, and I got coaching from my children on how to say this properly. This is:
"Duh" – which means "of course," as opposed to "Doh," which means I blundered.
Well, of course, when I describe the PHR using just about the same words but framed it a little differently and shaded the description a little bit differently, I got some very different answers, like:
"That's crazy."
Or, "You've got to be kidding me."
Or, "Have you gone off the deep end?"
The descriptions that led to the positive responses are on the left hand side of the screen and those that led to the dramatically negative responses are on the right.
And let me clarify that physicians I spoke with were uniformly in favor of providing better service to their patients and sharing information within their charts as they all agreed to a person that the information within the chart belongs to the patient.
What drew expressions of disbelief were perhaps some outmoded views of the PHR that I heard maybe as recently as a few weeks ago but not this week that talked about the ultimate purpose of the PHR perhaps replacing the
physician's medical record or as a means of control to
physician access to what you as a physician can see in your file or as an added
expense for physicians on top of what we're already asking them to do in buying
and maintaining EHRs.
My goal today is to help move the EHR-PHR integration forward, and as such I
believe it is useful to better articulate the issues that we're having trouble
with, the things that I believe make physicians uncomfortable or even bristle.
And these are the unclear definitions of the PHR. And even sitting here this afternoon, I've heard things that sound like patient use of computers, patient websites for health information, patient portals to connect to a physician's office, a little bit about what sounded more like a classic PHR, but that's something that in some ways concerns physicians a lot.
Second would be understanding ownership and control.
And third would be talking about consequences of PHR use on physician time, cost and complexity.
And these are the easy ones. In addition, if we have time, I'd also like to present these other musings on the PHR-EHR integration which I must add keep only me up at night; no one I've spoken with has mentioned these.
One is as we talk about the PHR, I always like to ask myself, and in my role of MedStar before I present a technologic application to the system, I always ask myself: What problem are we trying to solve? And try and talk myself out of the solution first by saying, why bother? What am I trying to do with this? And are there other ways of doing it that are perhaps simpler, cheaper, perhaps can be done without technology?
Secondly is one that concerns me deeply, and for those who have heard me talk before have heard me talk about this in terms of a barrier to EHR adoption – that is, the business case for information management, which I think is necessary for optimal use of both the EHR and the PHR. And also some interesting implications of this whole integration on current medical documentation.
Let's first go on definition. I think we've seen this statement before; I may be paraphrasing a bit, so I apologize for the misquote. But I think that when President Bush made the charge last spring, something like "Most Americans will have an electronic record within eight or 10 years" or whatever it was, that there was an inadvertent contribution to this confusion. I'm still not really sure what he meant by that, and as the phrase gets repeated by others, I get even more confused.
Did he mean that doctors will be using an EHR
within 10 years, or that patients will have a PHR within 10 years? Or I've even heard some people describe it as, no, no, you've got it all wrong; that we as a country are going to make a radical shift, such that every American will have a medical record, one medical record, shared by all providers with the patient having control.
Let me state unequivocably that without a concurrent change in reimbursement and a medical-legal definition of duty, which are not on anyone's agenda, to physicians, the answer is 100 percent clear: Every physician will continue to be responsible for creating and maintaining his or her own records, but hopefully by 2014 or sooner, there'll be electronic and shareable.
Additionally, without a fundamental change in our health care delivery system, while most, many or perhaps a handful of patients may have PHRs, the PHR will not replace the electronic record or the paper record.
And to answer what I thought was a specific question that was posed to the provider panel whether or not the tethered or untethered PHR makes a difference, I would say in these respects, by definition, it does not.
Going to ownership and control. What makes me 100 percent convinced of the need for physicians to retain ownership and control of their records is not what you might think but functions in sub-bullet points 2 and 3, which are what I believe are unfortunately the most important functions of the medical record today – not the information that's what's in it to care for patients, but the basis for payment and defense against the offense of billing fraud and the defense against future malpractice claims.
And again, unless we make a fundamental change in our payment system or liability system, which I'd be happy to argue for but I don't think this is the right venue, the PHR cannot serve as a tool that could alter or control the physician's medical-legal record, but it is certainly permissible to format the PHR such that a copy of the information is easily shareable for whomever needs it – providers, patients, care givers, others – and align the EHR with either a tethered or untethered PHR; it does make a difference.
Consequences of use. And here I quibble with something that Andy Wiesenthal brought up before where he said physicians and staff are relieved of the unwanted responsibility of being information brokers in situations where they add no additional value to the information. I'm an internist.
Basically what I do is I'm an information broker. I take historical information, I take physical information, I get information from other specialists, and I help patients to make, I hope, better decisions based on my collective knowledge and wisdom and having been through the experience for many, many years.
So I would say that it is not an unwanted responsibility. That's what many of us do for a living and that's why many of us practice medicine.
But, going to consequences of use, I would believe in most cases, because I haven't seen the PHR yet that does the ideal that many have talked about, that the PHR's value increases, or perhaps only exists, when it's connected – and we could make this plural – qualified and relevant clinicians.
The simple stuff are the requests, the appointments and refills, and I've put this more in the realm of what a half-decent patient portal could do, but certainly the consequences of having connection with a PHR and EHR are the things that I've listed below – answering medical questions, reconciliation of conflicting data, second opinions, and facilitating care coordination.
All of these obvious extensions of enhanced connectivity are currently unreimbursable, and the burden of adding more unreimbursed work enabled by the connected PHR will not fall equally on all physicians. Don't want to pick on my friends, the cosmetic dermatologists, but they're unlikely to be asked about, so what did I read this week about the NEX Cox-2 inhibitor being unsafe or even an Nsed(?) being unsafe?
Every medical discovery typically leads to serious and wanted questions. These are things we want to discuss with patients. But they typically fall on pediatricians, internists, family practitioners, PCPs.
And I'll add with a little bit of self-interest here that with PCPs already on the lowest end of the MD pay and professional scale, it would be extremely unwise to add more burden and unfunded work to this endangered group of physicians, although interestingly a thoughtful solution to the problem of misaligned costs and benefits of HIT, which includes the implications and consequences of its optimal use, may pave the way for widespread EHR and even PHR adoption or may obviate the need for PHRs for most patients.
Now for my own musings.
So, PHR – why bother? As I've looked at what I've read about patient surveys, about what they're looking for in a PHR or from my own practice perspective about why I might want patients to have a PHR, I look at this most typically as a response to poor access – access to their own information, action to their clinicians to ask questions, discuss problems, or seek care.
Access problems of these types are due not to technologic faults but rather, in my opinion, to a flawed reimbursement system, one that makes non-procedural contact with patients seem like a waste of time.
Whether these informational contacts occur during an office visit – do you ever notice, for those of us who are physicians, we're always rushing patients with "Yes, yes, I know, speak faster; that's enough of your history?" – well, that's not necessarily a good thing to do but all of our informational contacts with patients are rushed, whether it's in person, over the phone, by fax, or with a connected PHR-EHR.
And the PHR, I believe, will not satisfy these access needs that patients genuinely have and I genuinely believe need to be satisfied, unless there is a concomitant business case for information management, unless we can get physicians to slow down and say, you know, a necessary part
of your day is answering the phone, answering your phone calls, answering your email, answering your connected EHR-PHR queries. That is your job.
And similarly, other less important reasons for wanting the PHR which I think moving information to another clinician or retaining control over ones on information, which I think are legitimate, can also be done without a PHR. So, why would I want some patients to use a PHR?
And again, I'm an internist. I have only adult patients, I have no nursing home patients, so my experience is a little bit limited, but I would say the one circumstance where I would encourage my patients, in fact would love my patients to have an advanced connected PHR is where I need their help.
And that's where physicians who I think are being honest could say that caring for patients with multiple, complex, chronic diseases cannot do it on their own. We need patients as active collaborators, and for these patients, any tools that allow us to share quality control, share data exchange are sorely needed.
But the important point to remember here is the PHR, like the EHR, serves as an enabler of process change and its successful adoption does not necessarily mean less work. In my view, what means, particularly for these patients, much of the activity of chronic disease management becomes virtual, occurring between office visits.
My favorite topic, the business case for information management. I would say this fact is generalizable. HIT adoption is pretty much worthless without accompanying process change, process change that is oriented away from episodic and reactive care to proactive and continuous care, including care coordination.
While all of these activities are made easier and more effective with HIT, they still require added time, cost and effort, and if people say they don't, they're not using the tools well. And thus I believe they're not likely to be done without reimbursement, reform or incentives, which is of course the basis for pay-for-performance programs.
Incentives for technology adoption alone, whether they be for the PHR, the EHR or their integrated use, I believe are likely to result in what I would term "digital dysfunction" and a waste of technologic potential rather the four grand goals laid out by Dr. Brailer.
Okay, one last musing – rethinking medical documentation, one of my other favorite subjects after business case. And certainly this comes up all the time. Once when I was showing one of my colleagues who was one of the last people to turn the lights off at HCFA before they
changed their name, who I practiced with for 10 years, Dr. Bob Berenson, and I showed him with much pride the electronic record system that we've been using for eight years.
He left before we introduced it, and as you know, Bob is not one to be polite when he doesn't have to be and certainly not with people he knows well. And he took a look at it and he said, "Yeah? So? It's a bunch of garbage."
Well, he's right, and in fact I would say that most of what is in medical records these days, whether it's put in illegibly with pen and ink or legibly with computers, are a complete waste of time.
And one of my great fears is if the standards movement actually succeeds and we're able to more easily mobilize medical information, God help us. I don't think it will do much good.
And if any of you say, yes, please, go ahead, come to my office, take a look at my easily readable medical records or I could anonymize them and I'll secure email them to you. They're really full of junk. They are bloated, they have unnecessary verbiage either to comply with ENM coding deadlines or to satisfy what I believe is a misconception – that longer notes equal greater protection against errors and malpractice.
If we really want to share useful and usable information more effectively between providers or between providers and patients, instead of building what I have been told we could do, complex filtering schema to filter out this garbage and find the few kernels of knowledge prior to sharing, why not instead seize the opportunity to reform documentation with the older, paper-based, problem-oriented medical record, the thing I learned on, turning into what I would call a quality oriented, standards-based, shareable record.
So in summary, I believe that whether the PHR is tethered or untethered is really not very important, and certainly this comes from my perspective as somebody who is not in a closed system who will be representing physicians using multiple EHRs and understands that a tethered PHR makes eminent sense to someone like Andy in a closed system won't necessarily work in an open system.
Defining the PHR is extremely important and needs to be clear if only to put to bed legitimate concerns that providers have about ownership and control of medical records which can't be changed without changing the payment system or liability standards.
Pressures to de-silo medical information, which I agree it, via connected electronic health records, health information exchange, the CCR – continuity of care record,
or with PHRs, presents an opportunity not to share bloated garbage but to first make medical records actually useful, and an opportunity also, I think, to engage physicians and win their hearts and minds because I think physicians to a person largely would agree that the current documentation standards are meritless, wasteful and even mind-numbing.
Lastly, the most important issue to address prior to advancing any technologic solution is to make sure there is, first, a sustainable and attractive business case aligned both towards societal goals and the consequences of successful adoption and optimal use of the technology.
However attractive a PHR application is, and I've seen many excellent PHR applications, both tethered and untethered, if its successful adoption leads to more non-reimbursable activity on the part of providers, it will not be adopted. Or worse, if it is adopted, it will be used in a dysfunctional manner, much like most EHRs are used today.
Creating a business case for information management, however, will help to incent necessary HIT of many varieties, including, perhaps, a PHR, but more importantly, guarantee that we end up not with doctors and patients separated by a sea of gadgets but rather with an improved health care system with the focus on enhancing quality, safety, efficiency, and what I believe is a real driver for the PHR, access.
Thank you.
DR. COHN: Well, I want to thank our presenters. It was a very interesting set of presentations. Andy, are you on the phone? I guess I should ask.
DR. WIESENTHAL: I certainly.
DR. COHN: Okay, great. Okay, well, I think Steve Steindel wants to start out with questions, and Mike Fitsmaurice – we'll sort of take them around the room.
Questions, Answers and Comments
MR. STEINDEL: I may have a second set of
questions after I think about this a little bit more.
First of all, there were, as Simon said, extremely good three presentations, different aspects of the PHR, all very good food for thought.
The observation I made from the three presentations and a lot of presentations before is that the successful implementation of the PHR will be successfully involving the patient in using the PHR. And my question is not to any of the panelists. Unfortunately, I haven't had a chance to warn her about this, but it's to my colleague on the side from the VA, and Linda, you don't have to answer this question, but just bring it up.
This was fascinating on what's going on, the Bedford VA. How many other VAs is it going on in – and don't answer it if you can't.
MS. FISCHETTI: Jimmy, may I defer this question to you?
MR. MAGIERA: I can't answer for all VAs, but I can tell you that we started bringing this program from Maine all the way down to, I believe, Rhode Island. We were helped with a private organization, at the time was Bell Atlantic. It's now, I believe, Verizon. They helped us learn some of the technology to be able to network our computers.
And when we started getting a lot of computers donated to us, we started bringing them to other VA hospitals and we started these programs. They had at least two or three computers.
I don't know where the programs are at this point, but I know if it's going to succeed, it's going to take someone to work at it. You can't just put the computers in a room and let veterans go in on their own and use them because most of the veterans that I deal with are not capable of keeping the computers clean from viruses or if there is something that gets damaged on the computer, the hard drive and the Windows, how to repair it.
So, again, we were helping quite a few VAs for a while. We're also willing to help again. Just let us know where we can get a hold of – I'll even send some computers to you. We're getting more computers. When we update ours, we either give them to veterans or we send them to even special needs children. So we can use them, and again, yes, we did start some programs around.
MR. STEINDEL: For those on the Internet, please hear the commercial and send computers!
DR. COHN: Andy, did you have a comment?
DR. WIESENTHAL: Yes, I did. I think that, if I was listening for the subtext to the question, it's all about who has access to the Web and who is already capable or could be made capable of taking advantage of anything like this, and there are a lot of ways of looking at this.
In our system, and our membership is very, very broadly reflective of the populations in the areas that we have our operations, so about 11, 12 percent of our members are elderly, over the age of 65. We've got kids, we've got people where English is not the first language. And all in the kinds of proportions that you'd see across the country.
We know a couple of things. We know that of the 8.2 million, about 15 to 20 percent of them are currently active users of our portal, which is a lot but certainly not the majority. We also know, when we asked them, that upwards of 75 percent report that they have access to the Internet and use it today either at home or at work, and that number has been rising over the last five to 10 years.
So even in the face of no active program on our part or anybody else's with the exception of the one we've seen today to help train people explicitly to do these kinds of tasks, large numbers of people do and there's a sort of oft-quoted factoid that says something like our health care websites are now more often visited than the pornographic websites are, so that there's a lot of folks going out there on the Web looking at health care and it's not just one person doing it a million times; it's millions of people doing it millions of times.
DR. COHN: Yes. Thank you, Andy. Peter Basch has a comment that he wants to make and then, Linda, did you have a comment on this?
MS. FISCHETTI: Oh, I just wanted to follow up and say that myhealthevet is a national program, so we've presented today our experiences in one area of the country but this is a national program throughout all of our facilities.
Not all of our facilities have a Jimmy that's done as good of a job as we have at Bedford, so there are variable levels of announcements, engagements, advertising that's taking place at all of the facilities. But it is a national –
MS. DEERING: It is a national program.
DR. COHN: Yes. Peter?
DR. BASCH: My comment's going to show off my professional schizophrenia in that the very first thing I'm going to do when I leave this room is try and find out how I can get my computers to this gentleman and support this program because in my heart I believe that anything we could do for veterans needs to be done. I mean, and I won't wax on about that, but it's a wonderful program.
On the other hand, as a practicing physician who works in Washington, DC, who is watching this health care system globally – is "implode" too strong a word? – where emergency room access is awful to terrible, depending on the day; hospital bed access is "don't bother coming in because you'll sit in the hallway for 24 hours on a monitor because we don't have beds," I often think about need to have versus nice to have.
And responding to your question, Steven, about what's necessary to have to make the PHR work, I would say yes, we need the patient's involvement, but I would implore this group as they're thinking about that to think about: Is it something we need for all patients?
And I would add that my wife, who's a lawyer, has said never argue against interest, but I do it all the time. In the argument about how to incent EHR adoption, I have put forward the case that incenting EHRs for all physicians isn't necessarily wise, isn't necessarily a good use of scarce dollars.
If we had trillions of dollars in surplus, sure, let's pay every physician, $20,000 to put in a state-of-the-art IT system to maybe improve care.
But I can tell you as a practicing physician, every physician doesn't need one and it will waste needed resources.
From my perspective, while I want to do everything we can do certainly to help the vets and I think this program is wonderful, if we're thinking about using scarce resources to incent PHRs, I think certain classes of patients will not just enjoy them and participate with them but will be able to show improved outcome with them, and I don't think we're going to see that with all patients.
DR. COHN: Peter, thank you.
MR. MAGIERA: May I ask a question?
DR. COHN: Oh, sure.
MR. MAGIERA: Has there been a study on how veterans improve, or don't improve, working with computers? I think there should be a grant or some study on this.
I find that every veteran that I've worked with is improved. I mean, they're using their minds once again. They're coming down there out of the wards. This helps the nursing staff. They're spending their time with me on a computer. This has got to be healthy.
I mean, my computer system is separate from the hospital network system. I have no restrictions; the hospital does. If you put the word "sex" or something in a network system in the VA, you may get blocked out. You put it in mine, you go right straight through.
But I do have rules. It's a privilege to be able to use the computers in our lab, and you've got to follow our rules. And out of the 40,000 veterans who have come through there, I can't think of more than five that are not allowed to come back because they went on a pornography site.
This is important to them. They don't want to take that chance of losing their ability to come down and use those computers.
You know, the day of making little model cars and little paintings – don't get me wrong; that's still useful – but the veterans today want to get on the computers. They want to contact their families. They want to be able to get education on there. They want their health information.
I had a little questionnaire that I was using for a while and I asked a couple of question. I said, "Why do you want to go on there?" Before the Internet, we were able to get on the Internet, it was just "I want to be able to write a letter and play a couple of games on there."
Now, it's totally different. They want to know what their benefits are and what their health information is. And then they want to be able to get email.
So it's changing, it's changing. They no longer just want to go on a computer and waste their time looking at all these little games. That's part of it, sure – when you've done your work and you've found the information, you go and play a few games. But they want information that's going to help them.
And it has to be helping. I see it every single day. These people who were sitting and looking out a window watching these ambulances going back and forth and
wondering when their turn was to go in that ambulance and not come back are now in our computer lab spending six hours a day, some of them. You can't get them out.
We don't close, even during lunchtime, because a lot of veterans who are in work groups are CWT, Compensated Work Therapy programs, their only time to get to the computers is during lunch, so we don't close. We stay open six, seven straight hours.
We're trying to be as available as possible. They need this. They want it. And it's got to be, it has to be, good for you to be able to continue to use your mind even at 90 years old because he knows enough to keep coming back and he wants to come back and doesn't want to go back to his room.
DR. COHN: Okay. Eduardo, did you have a comment about any of the last couple of things?
DR. ORTIZ: Yes. I'd say it's related to several of the comments.
DR. COHN: Okay.
DR. ORTIZ: So, first of all, from the VA perspective, a couple of comments.
One, having worked in about seven different VAs through my different academic affiliations and currently being at the Washington, DC VA Medical Center, it's important to understand that the VA has a lot of national roll-outs of myhealthevet and care management stuff and advance clinic access and tons of stuff. But in terms of how it's rolled out at the individual VA, it's highly variable and it really depends on the individual VA site.
So it's not like myhealthevet is uniformly implemented and used at all sites. So that's an important thing to understand, although the obvious goal is to get it widespread.
In terms of what they've done up there in Massachusetts, that's not something that's universally done at any of the VAs I've been in to. That's stuff that's related his initiative and what he's done from
Massachusetts down to Rhode Island.
And I think what you need to do is see individually who has done that. But as far as I know, there's not anything nationally. None of the VAs I've been affiliated with have done anything to that extent.
So I applaud the work he's done, and I think that's great. But I would also say, too, that although I think that's very useful and important, one of the things I would also say, too, you have to kind of back off, too, and look at some data in terms of when you roll these things out – not just in the VA but everywhere else – start to look at who's actually using them, what percentage of veterans or anybody else is using these things, because that's important.
We don't have real use data out there, so as we roll these things out, and I'll kind – even though I work for the VA, I'll kind of take off my VA hat and just, as a health services researcher and informatics person, one of the things I will kind of encourage and push to the VA is to study this more. I mean, when you roll these things out, you should be studying it as you roll it one.
And that's one of their problems. The VA has a lot of IT dollars for implementation, but not for evaluation.
And so even though they've been one of the top places in the country rolling out IT and patient safety programs and all these things, they haven't done formal evaluations to see what is the extent of the impact in terms of outcomes. And I think that's very important.
And so one of the things – Linda and I both work for the VA but in different shops – so one of the things I push back is for Linda to go back to Rob Kolodner and their group and say, as you roll these out, study it, evaluate it, figure out what the impact is.
And I'll bring out just kind of a self-serving thing, but since Simon and Andy both are on their call, just to let you know that probably in March or April there'll be an article coming out in JAMIA that talks about the experiences of Kaiser Permanente. It looks at data from 1999 to 2002 and looks at use of eHealth during that time period.
During that time period in 2002, they had 117,000 users of eHealth, but that only represented 3.4 percent of all Kaiser members, 9.3 percent of members who had access, so even though the numbers were big, the relative numbers are still pretty small.
But it also looks at things like age categories, race, socio-demographic status, whether you had insurance, Medicare, Medicaid, whether you had certain co-morbidities, what was your disease index. So there's a lot of characteristics that we looked at. So be on the lookout for that in probably March, April edition.
Dr. John Shu is the lead author on that, and there'll be hopefully a couple of papers and that might be very informative because although it is Kaiser Permanente and it may not represent the general population, because Kaiser's such a big group, it probably does reflect a lot of what you would see out there in the health care world, so I think that would be something very useful.
But I'd like to see the VA and anyone else who starts rolling these things out to the extent possible to try and collect some of this type of data so we can learn, because we really don't know who's using it, why they're using it, what services they're using, what they value, what the impact is. Unless you study it, we're not going to know.
DR. COHN: I guess I would comment – and I'm sure others will comment also – but I think we need to bookmark and remember this issue of research initiatives, the need to study.
And I think whatever we may eventually come forward with probably needs to include a section devoted to that issue. And obviously, thank you for reminding us about this wonderful document coming out.
Any other comments? Andy, do you have any final thing on this issue? And I think this one again reinforces Jim, what you were just talking about, about this issue of researching and knowing what's successful in all of this, so –
DR. WIESENTHAL: I do have one small thing. I wanted to correct misimpression that Peter Basch may have gotten. I didn't say that doctors shouldn't be information brokers. I said they should not be information brokers where they don't add value to the information.
And there's a distinction there, so when you help a patient understand something, that's valuable. If you're merely telling them for the next time that they have been following a cholesterol – you know, and their cholesterol is the same as it was three months ago and three months before that, I would say you add no value to that member and shouldn't intervene in the process.
The larger comment is I don't know what the objectives were for sure here, but it seems to me that some form of personal health information on line is desired by many Americans, and not necessarily all, but many, and so getting some clarity about what the rules to help govern that and what kinds of information would be the most useful to people are both topics for research and immediate operational issues for lots and lots of people who want to be able to provide this, big and small.
And we'll gain experience, others like the VA will gain experience, and we've got to start informing the rest of the public about what's happening when we give information to our patients and members on line.
DR. COHN: Peter, do you have a comment on that? And then we'll move to the –
DR. BASCH: Just very quickly, because I don't like to pass up an opportunity to joust with my friend Andy.
I didn't misunderstand you. I was actually putting a slightly different spin to what you were saying. And that spin is that a lot of people assume that the movement, or mobilization, of normal results to patients is a benign activity and one that requires no input on the part of the doctor.
And I would say that as a practicing physician, that is not only not true, but that's one of our biggest failings. As a general internist, many of the patients I see have come back to me from the specialist with either chest pain or belly pain and they've gotten these "no comment" reports from the specialist saying, well, your upper GI is normal; go back to your internist.
Well, that's the, you know, send the normal results or the normal cholesterol. Last month might actually not be an ideal cholesterol this month, or if you just developed diabetes, the standard that we want to go to might be a little bit different.
So I'd say that most of the time we do add value to information. It's very unusual for me to send a report that's normal, and perhaps this is more representative of an internist patient population or maybe one of the things that drives me crazy, but when I open my labs every morning – they're electronic and they show up on my desktop and my EMR – I get a little asterisk if there's an abnormal value associated with it. Ninety-nine percent of them have some abnormality, because typically, as people get older, nothing is ever completely normal. There are very few findings that I think don't have some shades of interpretation.
So while I agree with you, Andy, I would say that most of the time the case of the sending the normal result without comment is very rare.
DR. WIESENTHAL: We're going to find out because our internists want to do it in large quantities.
DR. BASCH: Let them do it.
DR. COHN: I guess something yet to be studied.
DR. WIESENTHAL: Yes.
DR. COHN: Now, our next question is from Mike Fitzmaurice and we have Mary Jo Deering.
DR. FITZMAURICE: A quick question, I hope, for Peter.
A BAS team has developed a continuity of care record which is a data set that one physician wants to communicate to another physician via the patient. Do you have any opinions about the set of data that's in there? Would that be useful information for a personal health record or is it off the mark?
DR. BASCH: I need to be careful here because when I give, again, my opinion on the CCR, let me add that I'm speaking for myself and not for any of the organizations I work with because some of them have very strong opinions one way or the other on the CCR.
I happen to believe that the continuity of care record as a concept has enormous value, but perhaps it's because of the envelope that I consider it in. I consider the continuity of care record before it was, let's say, grabbed onto by every interest group who expanded it from a short summary to a multi-page document that sometimes get a bit unwieldy, is the electronic equivalent of what every doctor trained with and feels is an extremely appropriate way of passing off information.
That is, the targeted, structured handoff, something we all learned in training days as sign-out rounds, and I'll give you the analog equivalent.
When I send someone to the emergency room at my institutions, I usually make a phone call and I also generally tell someone I'm sending over electronically the problem list, the meds, the most recent labs. And it's usually a very short conversation which is essentially the essence of the CCR – a certain amount of structured data and a little bit of interpretation.
That little bit of interpretation is the nugget that might save the ER three hours of work or might lead to a correct diagnosis, or maybe not, you know, depending if it's timely or not.
But I always follow that discussion with a, "And would you like me to send the complete records?" Actually, easier for me to send the full record than to take three minutes and describe a subset of it.
And I'm always told, "Oh, God, please don't do that. We won't have time to read it. It's mostly full of junk anyway. We've seen your records, Peter."
So, if the CCR can function as an opportunity to provide targeted, structured handoffs that ultimately will allow for relatively seamless export and import of information, I think it serves a useful function not just in those situations but to a PHR.
Patients who have untethered PHRs could feed their PHRs with multiple CCRs. I like to think of the CCR in that case sort of like as a messenger RNA. It feeds a bit of protinaceous material and disappears and disappears after it does its job.
So I think there is value in it.
DR. COHN: Mary Jo Deering.
MS. DEERING: I actually have two separate questions for two different people, and I will just ask them one at a time, but I'm claiming right to ask my second question, too. I was going to originally ask them in a different order and ask Andy first because he hasn't been probed as much, but this turns out to be a follow-up to what Peter just said, so I'll ask it first.
I was going to pick up on your comment about the text blobs, the bloated medical record, and how, as you were talking about that, we had often heard in the past people talk about the overall effort to bring IT to health care, that we were worried about that we were just paving over cow paths et cetera, et cetera.
What I heard in your statement carried that analogy into the content of the health record, in other words. And again, just as I asked Patti, and you were here, about the implications of what she was saying for what constitutes useful information, she wants to add a whole array of information that nobody is currently looking at standardizing.
You are suggesting that perhaps there ought to be more careful ways to look at the contents of the health record and perhaps prioritize certain sections, areas. Is that a true interpretation of what you said? Is the CCR step in that direction? Are you working with any of the standards groups to help them prioritize what it is they standardize?
DR. BASCH: Well, let me take those in a couple of words. I'm not working with any of the standards groups to help them prioritize what they're standardizing.
I found typically – and maybe this is the first exception. When I've made comments like most of what you're trying to mobilize is crap, so don't bother, they don't want to listen; basically, they have their work to do and I don't think they have shown as much interest in consequences of what happens if they're actually successful, which I think would be disastrous to clinical medicine.
I do think that – and this is not just my opinion – if we turn our memories back a couple of years to the, probably won't get the name right, but it was an advisory body on regulatory reform to HHS that recommended, I believe June of 2001, June of 2002, by a vote of 22 to 1 or 23 to 1 to do away with the ENM coding guidelines, finding them as a waste of time, they weren't really looking at that point at the future of the electronic record.
They were just looking at dissatisfied physicians who were saying, instead of 15 minutes, I've got 10 minutes to spend with a patient, and I'm spending seven of them writing notes in the chart that no one will ever read again. If I ever have to read them again, I have no idea of what I just said because there's no value in it.
I'm taking that a step further and saying, yes, yes, I agree; they're a waste of time. They probably re-focus us away from where they should and for a lot of reasons we should do away with them.
But if we think even more proactively about the value of the medical record for the 21st century not as a set of papers of what we saw but as a way of providing value to the next provider, to the patient in the next encounter, to the concept of hypertension is not a point in time that needs to be expounded it, it's a point on a continuum that needs a little bit of verbiage and probably structured text associated with it to help doctors and patients manage those illnesses in the future and certainly do things like trigger decision support, trigger pay-for-performance and so forth.
So I think our entire concept of what should be in a medical record should be revisited, and doing it in this fashion can, I think, get us allies from physicians who may be a little suspect about using the computer.
But if you say, well, if you use a computer and use it under these rules and follow these performance guidelines, you don't have to write seven-page notes when three paragraphs will do, and I think it will also allow us to actually have stuff that we want to share.
DR. WIESENTHAL: Mary Jo, this is Andy. I couldn't agree more with Peter and with the direction that your question is taking. And I will tell you that we've made strenuous efforts to try to get clinicians to look at what it is exactly that we want in the record and how we want to structure that.
It's a tough issue, and in some specialties it's pretty self-evident to the docs exactly how they want to approach it and it really seems very easy. In the adult primary care arena, it's going to take a lot longer before we can reduce the amount of unwanted or unusable non-information that gets put into the record because people are striving to be complete for one reason or another, whether it's business purposes or medical malpractice avoidance and so on.
But it's very, very important, and at the time you implement an electronic health record and are also telling people that stuff you put into this record is going into a patient-facing portal, it's a good time to get them to start re-thinking about exactly how they populate their notes and their information.
But the constraints that Peter talked about are real. If you want to do billing in the United States today as a primary care provider, you've got to do evaluation in management coding, and if you're going to do that, you have to do things the way that the rules are set up; otherwise, you're going to be guilty of fraud and that's now been made a felony offense.
MS. DEERING: Thank you. It sounds like a policy challenge not to the Federal government but to entities like IOM or any of the other major bodies that might like to elevate that to a larger discussion.
DR. WIESENTHAL: Well, the other place is the specialty societies --
MS. DEERING: Right.
DR. WIESENTHAL: -- because I think if they can develop – and I've challenged my own and they're tough on the pediatrician – to figure out what content ought to look like, it's really something that they ought to be deciding.
What would transmit good information back and forth between somebody who's a colleague or a specialist in your realm is something that the specialty societies should tackle, but they're not.
MS. DEERING: Can I ask you a different question?
DR. WIESENTHAL: Sure.
MS. DEERING: On one of your slides, and you did mention it, when it had to do with the Kaiser Permanente PHR being tethered et cetera, but then you have a sentence that says, "Other aspects of our software will enable members to move data to other health care entities, should they desire."
DR. WIESENTHAL: Right.
MS. DEERING: I do want you to elaborate on that, but I want to get to a different aspect of that.
It's one thing for the technology and the software to enable it, but what about Kaiser's business practices? What are the circumstances under which Kaiser would allow that digitized information to be digitally transferred? Are there other non-software issues behind that action?
DR. WIESENTHAL: Well, there are several – sort of that's loaded, and I'll answer it.
We don't see the ownership of information as itself a sort of proprietary business advantage, so if a member – what I was thinking, obviously as a member of Kaiser, and they obviously have to transfer their health information someplace else; or they decide that they want a second opinion and they go see on their own and pay it for by themselves, they want to see another physician to ask about a specific set of clinical issues for themselves, and they want that physician to have information.
One of the things we're doing is we're going to open that up and allow either just to authorize that physician to look at that information when the person is there and if a member wants to shift their information somewhere else, that's their right and privilege, and we will enable that.
Now, there are two ways that can happen. One, today, what will have to happen is we'll have to print the contents of their record and give it to them. And I don't know if you've had the experience of seeing the printed versions of electronic health records, but they're pretty ugly. But it's the best we can do if the receiving end doesn't have something digital to receive it into.
But we've also invested in software that over the long haul will enable the synchronization of information with physicians and providers that have electronic health records that aren't us, and we'll send it to them.
We're not worried that getting information about our members in somebody else's hands is going to hurt us. It's there to help the members be cared for, whoever is doing it.
MS. DEERING: Thank you.
DR. COHN: I have a question; it's actually both for Peter Basch and for Andy. And I was sort of listening to both of you and I actually found almost more similar than different.
And I guess I was wondering, given that of course one of you is an internist and the other is a pediatrician and given that you are both living in very different payment situations, there's whole different methodologies, I'm actually wondering if the differences as we're hearing from both of you are really primarily related to the payment methodology issue and a little bit about the internists or the pediatrician. And Peter, maybe I'll you first that question.
DR. BASCH: Sure. I may ask you clarify a little bit more what aspects of our comments you found more or less similar, more or less different, because I would start off by saying of course I agree with you. I think that there are – if you want to answer me, fine, or if you just want to say go ahead and wing it, I can do that, too.
DR. COHN: Well, I guess what I kept hearing was that if payment methodologies were aligned and incentives were aligned, then suddenly it sounds like the answers came out very much sounding like Andy Wiesenthal in terms of that being actually all the way things could work.
But because of ENM requirements, which are payment issues – I mean, it goes on and on and on like that because of all the current constraints of how payment currently occurs, there's a lot of things that won't work currently in your environment.
DR. BASCH: Sure, sure. And I think the differences between adult internal medicine and pediatric I may have exaggerated. There may be less of them.
I think that I was focusing more on thinking about who might actually need a real PHR, a real interactive tool that could communicate digitally with their physician to improve their care and thinking.
And I'm not a pediatrician, so, Andy, feel free to say, whoa, hold on there, guy, you're misspeaking. But I do have children and I certainly help to manage their care as they've gotten older. Fortunately they've both been very healthy and my only needs, informational needs, for my kids have been immunization records.
And quite honestly, I'm a very disorganized person and I much prefer to call my pediatrician once a year and say, can you send me that immunization record again? for the 10th time, because I can't keep it anywhere. But that's been my use.
On the other hand, I do know there are sick kids, and I do know that sick kids need collaborative management just like sick adults. I think it might be more common in an adult practice to have chronically ill people with multiple complex problems that might have more informational needs.
So that's why I made that difference.
But let me agree with you completely that I think that the major, in fact, probably the only barrier, to successful adoption and optimal use – and that's stressing optimal use – of HIT is our dysfunctional payment system. I think that what makes a system like Kaiser or the VA function differently than our private fee-for-service system is in our private fee-for-service system, with few exceptions, physicians are paid and reminded constantly with declining reimbursements and the need to be productive, that it is volume of episodic care and that everything else that you do is, I won't say quite a waste
of time, but you have to try and minimize it, and that is the driver that forces physicians who all go into medicine, I think to a person, idealistic and wanting to do the right thing and practice the very best they can to, after a certain number of months or years, become productivity machines and that's, I think, one of the prime causes of dissatisfaction in the business, not being able to do what we want to do for patients, because that's why we're doing this.
I think that we are beginning to see with some pay-for-performance programs coming out a shift in that. For example, we're hoping within our health system that one
of our local major payers will be adopting a huge pay-for-performance program a la Bridges to Excellence and I've been able to convince my health system, should this occur, not just do we have to expand the use of our EHR which produces those voluminous crappy notes that I do, but we need to add certain tools to it, like an integrated patient registry and a patient portal, because if I'm now going to get paid X-thousands of dollars extra per year if I can have my doctors perform up to a certain level, I can't do that without certain interactive tools. And now I've got a business case for doing the things that we'd all want to do – better care, better communication, proactive management and so forth.
So it's a long-winded way of saying I agree completely.
DR. COHN: Andy, do you have any comments?
DR. WIESENTHAL: Well, I'll be brief and say I agree completely. You know, when incentives are lined up, you get what you want. That's a trite thing to say, but it's absolutely true. If you push people in a certain direction, you're going to get exactly where you're pushing them.
And I'll stop there. That's why I said the personal health record is not an issue inside of our organization because everybody believes it's going to perform useful functions for members.
DR. COHN: Well said. Any final questions for our testifiers? Gene?
MR. STEUERLE: It's just a quick one again for Peter and Andy. But I do want to make a quick comment.
I do think what Jamie represents though in his testimony was the extraordinary importance of consumer demand. As I've looked through this again and again and we've talked about incentives, I think ultimately the incentive is with the consumer, even if we're talking about pay-for-performance, everything else.
It's ultimately, I think, going back to the consumer, which I think in some sense – and the consumer's intermediary like you who's actually in some sense marketing the demand for it – I think actually makes a big difference.
But the question I had was really more for Peter and Andy. Both of you mentioned briefly the issue of liability as being a potential obstacle. But I didn't hear from either of you much in the way of suggestions about what to do about it. I'm just curious whether it's just something that's out there that just has to be dealt with or whether you have some more formal recommendations there.
DR. BASCH: Andy, did you want to go first?
DR. WIESENTHAL: Yes, I guess I didn't make it as
clear as I could have. I believe the physicians will think that they might be liable for the contents of a personal health record that they post into it and it would be wrong to hold them accountable for those things if we don't equip them with really easy to use tools for actually making sure that the content of the personal health record is up to date.
And so the approach that I would take is to say we need to sort of have a honeymoon period or something like that that says "we don't think that the personal health record is a reliable document, but we're getting started on it, and so for now, caveat emptor" or whatever you want to say about it – the user beware; it may be incomplete or outdated information, but it's better than what we used to have.
And then we make sure that as it becomes more prevalent that we have a way of insuring that whoever is responsible for putting information into it can do that in real time and vouch for its accuracy. And if there's a way for somebody who looks at the personal health record to know when it was last updated and who was responsible for that.
I think just like I'm accountable now for something that I put into a record, I should be continually accountable. It's not the same question as the question of ownership that Peter raised so crucially but just I have a responsibility for making sure that there is up to date information about my patient in their health record; this is part of their health record and I should be accountable for that.
But I don't want to be held accountable if it becomes an enormous burden that is impossible to cope with because the tools for managing it just aren't there.
We need to address that issue and be explicit about that as personal health records are implemented, and then make sure that we have covered the liability issue in an overt way so that everybody understands what it is and if it changes over time, how it's going to change.
DR. COHN: Peter, did you want to clarify? Want to clarify it?
MR. STEINDEL: Andy, this is Steve Steindel. I have a clarification question to ask you regarding that.
It would be my assumption that if you put information into a personal health record, that information should exist in your version of their electronic health record.
DR. WIESENTHAL: Right.
MR. STEINDEL: And if that's the case, I would imagine that your liability would exist is the same as it would exist in the electronic health record and that would only be if the information was – if you looked at the personal health record and it was the same information, it was unchanged. Are you referring to any other aspect of liability?
DR. WIESENTHAL: I'm thinking of a situation which I think is going to be the more common, and that is that's untethered. So you have a health record that you maintain for a patient in your office as a doctor and then you know that the patient has a personal health record and you find a way to do exactly what you described, which is to gain information from your health record system into the patient's personal health record.
Now, if your health record system is paper, then that becomes pretty cumbersome, and the burden of doing it is so onerous that I think that people won't do it, so there will be more up to date information in the record you've got in your office on many occasions than there is in the personal health record that's untethered.
In a tethered system like the one we're going to have, it's a non-issue because in fact it's not separate records; it's the same record, it's just different views into it. So there's no problem.
But that's what I'm trying to get at. That means that we've built the tools so that it doesn't require an effort on the part of doctors or nurses to put information into the "personal health record." Where it does, that's a barrier to it being up to date and accurate. And if you don't make it easy, there will be differences between what is in the doctor's record and what is in the patient's record.
MR. STEINDEL: Thank you for that clarification. It makes sense to me now.
DR. BASCH: Let me start by saying that Andy's a much nicer person than I am because I'm assuming in the world of the untethered PHR that I will make either electronic or paper copies of information available because I believe, like most doctors do, that the information belongs to the patient.
But I'm not going to be the one putting it in or typing it in or reconciling it or buying it for them.
In response to your first comment about consumer demand, as a primary care doc who accepts all insurances and tries to keep his doors open, my sense of answering consumer demand is we're going to keep our doors open. And if patients say, well, you don't have this particular luxury item for us, I'll say, fine; I'm sorry, you'll have to go elsewhere.
So I know that consumers may want it, but they're going to have a difficult time necessarily exerting that demand from a very overtaxed system.
Getting to the issue of liability, though, I look at this in three separate areas, two of which are germane to this discussion; one is of interest to me and probably not germane to the PHR.
My specific comment on liability had to do with the sense of control of the record. And perhaps my comments and my concerns were based on yesterday's or last week's or last year's version of what the PHR might be, which is patient control of the actual record of record. And I have heard people talk about that, I have heard PHR zealots say that is the ultimate vision.
My concern about liability was physicians can never give up their medical legal record because we are duty-bound medically, legally, to preserve it. So that was a very narrow concern about liability there, which sounds like, as I'm listening to this discussion today, is based on an outmoded concern.
Secondly, in terms of the liability, and I'll take a slightly different spin than Andy's, of interfacing with a PHR. I'm going to say that I'll tell my patients who want to use one, and we will have a version of a tethered one, kind of more of a patient portal, but for the untethered one.
Just like my patients who use Quicken – I'll give you the data and it's yours – you know, you could put it in, you could misuse it, you could spin it upside down. Once you got it, it's yours to play with, guy, and I will not feel one bit responsible for how they manipulate it or change it because I have my own record as a back-up for this is what I sent you; I don't know what you did with it.
Looking at it the other way, as we take input from personal health records, physicians are now duty-bound, and I think justifiably liable, for always assessing the reliability of their informational inputs.
We're taught when we're in medical school and taking medical histories to determine the reliability and accuracy of the historian and looking at data as we hear it, say, does this sound right to you?
So if a patient presents, let's say, a PHR to me that says they had appendectomies in 1980, 1982 and 1985, if I just say, "Oh, cool, except –" and put into my record, I'm an idiot. And if I get sued for that, I should be.
On the other hand, I should stop and say, wait a second; did you really mean to say that? Let me take a look at those scars and let me see what I think they are, and oh, you really had this, this and this. We do this with patients all the time. We either get misinformation from a doctor or mishear something or misremember it.
So I don't think that the PHR would necessarily change it. I think physicians will always have a
responsibility that the information comes verbal, fax, phone or electronic via a PHR to look at it, interpret it, and say, does this seem like it's sensible and useful information before they accept into their record.
The third part that I think is not necessarily germane to today has to do with extending liability in an interconnected health care system where information flows more freely and what was in one silo and somebody else's problem now is in a dozen silos and a dozen people's problems. But I don't think that's the work of this Committee.
DR. COHN: That's actually hard to know, but it's probably the responsibility of somebody. But you're right; we're not lawyers. But certainly, one has to be a little paranoid about wanting things to be prescribed and clarified.
And I really want to thank all of you. Andy, you, obviously Peter Basch, Jim Mageira, for your presentations. I think they've been fascinating. Peter, I think you're going to cause me to think very hard about my 30 years of medical documentation practices.
[Laughter.]
DR. COHN: Yeah – whoops! But I guess there's always a new day and a new opportunity to clean up one's act. But really I think it's been very useful. I really want to thank you all for taking time.
And I think we're running a little late on this session, but it's been well worthwhile and very thoughtful.
Andy, I presume I will look at things and give you a call a little later on?
DR. WIESENTHAL: Yes, that's fine.
DR. COHN: Okay. And so thank you very much for taking time.
DR. WIESENTHAL: And thank you all for the opportunity to talk together today. I appreciate it, even virtually.
DR. COHN: Yes, thank you so much.
DR. WIESENTHAL: Bye.
DR. COHN: Bye. Peter, the final comment I would
make is that the first session, and I don't know if you were here or not, we talked about how unclear what a PHR is and David Lansky sort of described work that he's doing that at the beginning he sort of said, well, there's no real definition; the world there is very hazy. He's trying to do some work.
So anything that you may have thought that you had heard or otherwise or on the table or off the table, you shouldn't necessarily assume things will either remain on the table of off the table in anything that happens on all of this because I think it's very much of an evolving
thing. It's a dimension. We're trying to figure out a system, a record. We're trying to come up hopefully with some definitions or a taxonomy that maybe creates a little more clarity around all of this stuff.
So I guess hopefully everything will make sense when everything is done and we look forward to the Federal government being very helpful in finding some leadership on that with us assisting.
So thank you very much. And Jim, thank you once again for reminding us about the importance of championship in all of this.
MR. MAGIERA: Well, thank you very much for inviting me to be able to just speak as an average person, a veteran and employee. And thank you very much, all of you. You've been very nice to me while I've been here, too, so thank you very much.
Open Microphone
DR. COHN: Now we have a couple of minutes. I think what we're going to do is to, first of all, offer just sort of an open microphone time in case there's anybody in attendance who feels that they need to make a statement or comment about any of the testimony today or any of the issues we've discussed.
John, did you have any questions or comments?
DR. LUMPKIN: No, actually I thought there were a
lot of good questions, a lot of good discussion. I'm not sure I have a lot more clarity that I did when it started, but that's good stuff, though; that's why we have the hearing.
DR. COHN: Yes, probably just thoughts on your medical record documentation practices. [Laughs.]
Carol Bickford wanted to make a comment – please.
MS. BICKFORD: Carol Bickford, American Nurses Association.
The discussion today has been focusing on the Federal sector. Are you going to be exploring what's being done at the state government and local level where we have some of our local networks that might be in place? Is that going to be part of the testimony and the coming experiences?
DR. COHN: John, I don't know if you want to answer that. I think part of the discussion today and tomorrow will be to figure out next steps. I think we don't know at this point. John, did you have another comment there?
DR. LUMPKIN: I think that's a fair statement.
DR. COHN: That's a fair statement, okay. Any other comments, questions, open testimony?
Come up to the front and introduce yourself, please.
MR. HERSH: Hello. My name is Alex Hersh, and I'm the National Implementation Manager for myhealthevet within VHA Office of Information.
And I just wanted to assure you that we have a comprehensive implementation strategy that integrates communications and training and implementation and support.
Jimmy's one of about 200 points of contacts that we have in the field representing each medical center, and as was noted by Dr. Ortiz, we have variation in the level of performance. Jim is definitely one of our high performers, but he's not our only one.
We also have some activities happening within our 21 networks where there's collective efforts going on and then also through certain lines like librarians and patient educators and other folks that have played a vital role in making it a success.
So, we're still working hard, but I wanted to assure you that we have a national strategy and we're working very hard to make that happen. And our focus is not just at the VA medical centers; it's for veterans in general.
DR. COHN: And Kathleen Fyffe had a question for you?
MS. FYFFE: No.
DR. COHN: No.
MS. FYFFE: Not for you, sir.
DR. COHN: Okay.
MS. FYFFE: I was in and out of the room a couple times today. On Panel 2 on the Agenda, you have listed David Kibbe and also Catherine Liberlies. Are they going to be testifying or did they submit written testimony?
DR. COHN: Catherine is going to be testifying tomorrow. She was ill today.
MS. FYFFE: Okay.
DR. COHN: And David Kibbe, I believe, is not on the panel.
MS. FYFFE: Okay. Thank you.
AGENDA ITEM: Committee/Workgroup Discussion
DR. COHN: Now I guess I would ask everyone – we've got a couple of minutes left and I think it's time to sort of think through what we've heard and just so that we can identify issues to bookmark and issues for next steps and all that.
So I'd ask any of you have been taking notes or have any thoughts, now's the time to discuss them.
Stan, you're usually good at this one.
DR. HUFF: Well, I don't know that I have too much to add. I think what I've done is gained a lot more information but I haven't been able to digest it in a useful way. In other words, in the back I think: What can we suggest or do that would make it better?
I guess the thoughts I have had are along the lines of one thing that's helpful would be to do something along the lines of what's already been done for the EHR, which is give definitions and things to words so that when we use them, we use them – and so we're not trying to define what the PHR is but to define characteristics of the PHR in a way that's consistent so that people would be able to classify them and talk about them and communicate effectively about them.
And then I think there are just entirely different dimensions of them.
One is that sort of classification and comparison and then when you think about things that we could do, one would be to encourage people to create consistent content, because again if the processes within offices are not more consistent, then our ability to offer consistent information when we share across different domains of information is markedly reduced. And so that seems to be an important part of this.
One thing that I would say – there was this idea that the record could also be pictures and other things. In fact, people, for instance, were doing that.
We put pictures and sound bites and all kinds of things in the electronic medical record and there are lint codes for those things. There are lint codes to name that kind of information that you put into a record, and so people have already started down that pathway, too, which is, I think, a good thing to do.
So again, I don't think I'm adding much, but there's just some thoughts there.
I think the big challenge now is to synthesize this and say what, based on what we can learn from what's testified, what could this Committee do that would be useful in terms of recommendations or encouragement that would move this area forward?
DR. COHN: Eduardo, you had a comment?
DR. ORTIZ: Yes. I just thought about this, and I guess I should have asked it earlier when we had Andy
Wiesenthal on the line, because I'd kind of like to hear
some perspectives from the provider group, although Peter wasn't representing MedStar, he was representing himself, so I don't know if it would have helped.
But when you were thinking about this whole PHR thing, and Simon, when you talked about this whole modular thing, which I thought was an interesting concept, and Patti also kind of seconded that, where there may be pieces that you can put out there in terms of managing patient information, we talked about some of the things that aren't very controversial, like scheduling appointments, medication refills.
And I think everybody thinks, oh, that's okay, the patients probably like it, the clinicians don't mind.
But then you get into some pieces that are more controversial, like should patients be able to read their medical records, which people say, oh, yes, they should – but I'll tell you, that's pretty sensitive because it's my understanding like at the VA, and myhealthevet people can correct me, but myhealthevet is set up that they could turn that function on.
But clinicians have balked and said, no, no, no, don't turn it on.
So during the pilot roll-out of myhealthevet, they haven't turned that piece on because the clinicians didn't want it turned on.
But yet, not through a study but anecdotally, I gathered some information from patients, and one of the things that they really wanted was to read it.
In fact, one person told me that the two things that the vets wanted to do the most was, one, check their service status because in the veterans system, you want to know if you're service-connected or not because it covers your medical care if you're service-connected, and the second thing was they wanted to be able to look at their medical record, look at if it was accurate.
But then we couldn't turn it on because the clinicians didn't want it.
And I'm not sure where I'm going with this question; it's just something that came up that I'm just wondering when we think about the different modules, there are some things that are more controversial and I wanted to get some feedback or input at some point in terms of maybe what the patients think about this kind of thing versus what the providers think and how we're going to deal with some of these issues.
DR. COHN: I don't think you're going to get an answer, but you're going to get some comments. Mike, and Kathleen.
DR. FITZMAURICE: I've got a question maybe of you, Eduardo, and that is: The Privacy Rule says that patients can get access to their medical record, can look at it and copy it and can add a page of amendment.
Are veterans under the Veterans Affairs not considered covered entities under the Privacy Rule?
MR. HOUSTON: There's a substantial difference between what HIPAA allows and what I think Eduardo's talking about. What HIPAA says is that they have an opportunity to review their medical record. That doesn't mean that it has to be provided to them on line without some type of structure.
DR. FITZMAURICE: Just a copy they can take away?
MR. HOUSTON: No, it's not a copy they could take away, because HIPAA says you have to give them the right to review their medical record – that might mean going to the medical records department, asking for a copy of it, or the record itself, which they can review. Copying is still something that could be charged for, but the point is that –
DR. FITZMAURICE: Agreed. But they can still get a copy of it.
MR. HOUSTON: Right. They can get a copy of it, but I think there's a sort of a different structure to it all. And I think the concern is that there's an immediacy issue associated with direct access to the medical record and it might get in the way of providing patient care.
I mean, I've heard that argument from physicians.
What happens is somebody goes looking for test results prior to the time I've had a chance to review them and counsel them or to do whatever. Will that actually cause people harm?
DR. FITZMAURICE: They would have to argue successfully. Otherwise, it's reasonable to give the patient the record.
DR. ORTIZ: And I'm not saying that it's not going to happen, but I've just noted that has been a barrier, and I don't know about any of the other sides, but to Mike's knowledge, Kaiser and Geisinger and the VA and other places that are rolling out these PHRs or portals or whatever you want to call them, as far as I know, nobody is letting patients actually have access to the record, the full record review that the clinicians are writing the notes et cetera.
It doesn't mean it's not going to happen, but I'm wondering if that's something we need to talk about, is that something that somebody wants to comment on from the myhealthevet group? I'm just kind of throwing that out for discussion.
And it's not even just the issue that John brought up in terms of if patients see their lab information before their doctors talk to them about it because some places actually are giving them specific pieces, like at Geisinger now, you can actually view a select group of lab results that have already been kind of determined that it's okay for patients to see this.
But there's also issues – just the sensitivity of reviewing the notes, of seeing what I wrote about the patient and then do I have to be careful how I write things?
So I think ultimately they will have the rights, but it's something that we haven't gotten there yet and it is part of this eHealth portal, PHR et cetera, so I'd kind of like to hear what people from the VA have to say about it, maybe from the developing side and from the patient side.
DR. COHN: Kathleen, did you have a comment on this one, or was it a different thing?
MS. FYFFE: Yes, actually I do have a comment, but I'd like to hear Jim go first.
MR. MAGIERA: As a veteran, I want it – I don't care what you think. I want that information. Let me determine whether I should have it or not – not you.
I want to know, as a veteran, what's in there.
I don't care if you're writing progress notes that are saying something bad about me or maybe it's something I don't want to hear. I'm not an insane person; I can understand them. I'm not going to go jump off the bridge. I'm not going to come over and threaten you. I'm going to talk about me personally.
I want to know if you're saying that my therapy that I'm getting is doing this or it's doing that. I want to know that. Let me determine that, please.
As a veteran who fought for our country, I want to make that determination, not someone else. Give it to me – all of it. I can live with it, believe me. I don't know if all veterans can do that.
MR. HOUSTON: That's a dilemma, because you've just said the key phrase here which is are all veterans capable, or all patients capable, of successfully understanding what their medical record means and does it present harm to some of them?
MR. MAGIERA: Maybe it could, maybe it could.
DR. COHN: And I don't mean to break in here, but I want to move the conversation up a little bit because – Eduardo, thank you.
And thank you very much for your comments. It was very appropriate. But I don't know that you serve everyone by going to the heart of problems as opposed to while we're trying to figure out the overall structure of what we're trying to do.
I think you started out and I think your comments about things were fine, but then it drilled down into a single issue way down here.
MS. FYFFE: And I'm very glad Eduardo brought that up, because I didn't realize that there was resistance to letting people look at the records.
But it reminds me of the sensitivity that health insurers and life insurers have had about not wanting to give copies of the medical records that they have in their possessions to their insureds because what they found was they would give the raw copy to the insured and the covered person, the insured, would see in there – oh, my doctor said, you know, "40-year-old white obese female," and that was very offensive to the 40-year-old obese white female, and she would immediately get on the phone and call her doctor and say, "What do you mean I'm a 40-year-old white obese female?"
And so the insurance companies would say, no, we don't want to give that raw information to you. If you want a copy of your medical record, you have to go directly to your provider and let him give it to you.
So I just wanted to bring that up as a possible analogy in terms of the sensitivity that has actually existed in the past about the documentation.
DR. COHN: And I was just going to chime in and I think Eduardo was aware that there are currently business practices that occur in the VA as well as most other organizations about how information is basically given to patients.
And once again, I'm sure there's a fair amount of variability, but usually it's given in an environment where if there's questions that they can be addressed at the time it's being reviewed.
But if this is an issue we want to explore rather than speculating how it's done, we could actually have some people come in and testify, a panel, if we decided this was one of the key issues that we needed to come to some resolution on.
MS. DEERING: Just add a spin to it, if I could preempt Jeff for a minute just to actually wrap that up in terms of framing into a hearing.
It seems to me there's also the possibility of building from this into the notion that gets to what Peter and Andy were talking about, namely, this documentation, and maybe saying – first you start off about what can patients see and under what circumstances can they see it?
But what about the content?
What are the fields of the PHR, not just the functionalities, but what are the information fields of the
PHR that everybody could agree were appropriate to be automatically shared and people would write to those fields within the EHR and they would be automatically pointed to the PHR?
So maybe that is a way to help get at this prioritization that Peter was at while also in a way finding a solution to this issue, getting at the issue without trying to tackle it head-on, but just say, okay, what are those components of personal health information that, number one, are not proprietary; number two, should be readily standardized and exchanged?
So that might be another way to frame it.
DR. COHN: Now, Jeff, did you have a comment?
MR. BLAIR: Simon, when I raised my hand at first, I raised it because I thought you were looking for a summary of what did we learn, but I'm not sure. Is that what you're looking for?
DR. COHN: Yes, actually that is what I would like, because I don't think we can solve this particular issue that Eduardo brought up in the moment except to note it and bookmark it for further discussion and decide if we want to do more action on it.
MR. BLAIR: Well, okay. There's about five or six major thoughts that I pulled out of today.
A couple of them came out of David Lansky's which was that in addition to the idea that personal health records are targeted to benefit the patient and also might be useful when they're shared with the provider for patient care, it became clear that there's a lot of benefits of personal health records if that information can be shared for public health purposes via certain Federal agencies that could use that.
And so as a result of that observation, it seemed as if, number one, we need to examine more clearly exactly what would be the circumstances whereby a patient or individual would agree to share that information for clinical research and public research.
So that I think is an additional area for exploration. What would be the mechanisms for that?
The second item out of David's, and I'm boiling it down to two right now and then I'll go on to the others – the second one is that if we start looking at it for public health and clinical research purposes, the personal health record will have additional information beyond what the regular electronic health record might have, specifically: Where do you live and where do you work and what environmental circumstances have you been exposed to?
And therefore it extends our previous examination of privacy – how do we wind up dealing with, or what guidelines should we have, in terms of privacy for the personal health record?
Those are the two from David Lansky.
The other ones, the observations that I picked up from the second and the third one, which was that I think there's an expansion of our conception of early adopters but not only early adopters but folks that would use personal health records intensively.
And as my understanding of how that altered, it then meant that there had to be a lot of different data points to capture besides just the keyboard and the computer, when Pat Brennan testified to us.
And that led to the extension of our concept of
interoperability – what needed to be included in that for personal health records? It gets very broad and, frankly, I could even think of three or four more that we didn't even mention.
You know, we mentioned the idea of possibly mobile devices and laptops and chips and bar codes and all the rest, but other countries wind up being able to capture information in the home for clinical purposes, and that also would need to be interoperable.
So there's that piece.
And then the last major observation that I think of is that there's a lot of different ways people are trying to provide value to patients or to providers for personal health records and personal health record systems, and we need to clarify and maybe enumerate that, depending on the intent or purpose or use case, the idea of personal health records and personal health record systems has not converged to a single model.
We have multiple models and we probably need to accept and support those multiple models. Maybe they'll converge someday in the future, but as of right now, I
think they all have value and we shouldn't restrict or confine or create definitions that limit the way that we meet user needs.
DR. COHN: Okay, Jeff, thank you. I have a couple of comments I want to make. I think they're sort of along the lines of yours, and we will finish off in the next couple of minutes because I think we have people – oh, you have a conference call, okay –
But I think that you made a number of comments, which I sort of agree with, about the fact that PHRs have not gone to single model.
Of course, EHRs haven't gone to a single model, either, so it may be unrealistic to expect a frontier area to be more standardized than an area that we've all been playing around with for 15 or 20 years.
But I think there's a responsibility that others commented on that we need to have ways to accurately describe what it is we're talking about, and I think we continue to sort of fall over ourselves trying to figure out what exactly we mean when we use these terms and whether they're PHRs, PHR systems. Is in out mind, appointments a part of a PHR or is it a module? You can go on and on and on.
And I don't know the answer to it. I know a lot of these pieces are valuable; that's why I tend to think of things as being modular.
But we need to somehow have a way to uniformly describe them so that when we say something, we know what we mean. And I think Stan made that point.
The other piece that I sort of found myself speculating and wondering about may get back to really the charge of the Workgroup in relationship to this activity. I have to say that I apologize, but I'm not exactly clear what that is.
And if on the one hand it is to come up with interoperability standards, well, that's one charge relating to PHR.
On the other hand – and once again, I guess I tend to be reminded, for example, about David Brailer and others -- I mean he's a physician but he's also an economist and he's also very well aware of the price of things and doesn't want to see things spent where they don't need to be spent.
And one of the things that I've been listening to today has been sort of the issue of business cases, like what is the business case that would drive something in this area?
And indeed, it's probably very appropriate that our first panel tomorrow, and only one, is on business case and business issues related it, but it seems to me that if we can posit something that really looks like that there's a very strong business case for it, then one of the things that we might do, which is completely aside from interoperability standards or maybe will drive the interoperability discussion, is that there's a business case for something – it deserves and we should be recommending that something like that should be tested on a wider scale. And to make that happen and be successful, we need those interoperability standards to support that activity.
And that's obviously a different way to approach this, but at least it grounds the discussion, as opposed to records for every purpose for everyone.
I guess I don't know what the right answer is here. I did sort of, I think, hear in all of our conversation that at least for something that is more – I hear patient appointments, probably there's a business case no matter where you stick it in, but I don't know that that's an area that we would really want to focus on.
But if we're talking about more full-featured personal health records, patients that have multiple diseases, who are involved in chronic care, maybe older a la CMS populations and all that, there might be a population where there might actually be significant benefit from at least many of the functionalities we're talking about that might result in lower costs health care and better quality of care to the CMS population.
And doing something like that might help tether and focus our conversation.
Now, I'm not convinced that that's all the case. I'm just sort of saying, based on what I've heard today, based on previous conversations.
And obviously James and the VA population which while not uniformly elderly, a lot of them are an older population, once again reinforces that view that that is the population where there really might be the business case and there might be the benefit for something like this.
Now, we can talk about that more tomorrow. And just once again helps focus the conversation a little bit. And I just posit that.
I mean, there may be many other business cases and business uses, and, Gene, I have you think about that also, but I'm sure at the end of the day you sort of say, why bother? Which is what Peter would say also. And there would have to be a reason.
MR. STEUERLE: My notion was that in the end, the ultimate demand for something for the consumer has to be the consumer and the business has to have the type of incentives to want to provide it. And I was trying to think through that part, but I haven't resolved it.
DR. COHN: Yes, and I guess the question is: If the business case is for the payer. How does that translate into all of this stuff? And I don't have the answer to that. I don't know.
DR. LUMPKIN: But, Simon –
DR. COHN: Yes, John?
DR. LUMPKIN: Let me just toss out that part of the difficulty is that there needs to be a value judgment, and I think that's going to be our charge. Is there a value judgment that says that the electronic patient dimension, the decisional support, all those things that Pat had in that sort of jigsaw puzzle piece slide, if we determine that's of value, the business case for that may not exist in the current period.
But if we think that there is value to that, then the work that we do as a full Committee needs to reflect our understanding that there may be value and there may be a business case down the road, whether it's two years, five years, or whatever.
And that means that we may not be looking for specific standards for personal health records but that our other work should make accommodation so that we don't close the door to personal health records because we've made a value judgment.
DR. COHN: John, I think that's a very good point. And once again, it's a question that gets back to what we decide as a Workgroup and what our recommendations might look like.
Yes, Jeff, I think, has a comment.
MR. BLAIR: I kind of kept this one aside because I'm not exactly sure exactly how we should do it, but it's a concern.
And the concern goes back to the experience that I had when I was with a major computer manufacturer for many years and when we would design systems, we would focus in, just like we are today, very focused in, on what are the user requirements?
What are the use cases?
How do you wind up technologically supporting that?
And very often, you'd be halfway down the road, sometimes all the way down the road, to the architecture or the systems design, and then you'd wind up saying, okay, we have to consider privacy and security as well. And in many cases, that meant it was a retrofit and it wasn't done well.
And so one of the things that I think we should examine, talk about, think about, is we've segmented the privacy.
On the NCVHS, we have privacy as a separate Subcommittee. And maybe we still have to keep it a separate Subcommittee because there's separate legal skills and there's other issues and maybe the only way you could get things done that way.
But I am concerned that if privacy is not part of the initial design of the architecture for the National Health Information Infrastructure and part of the design for personal health records from the very beginning, if we don't have a good idea of where our basic boundaries and values are for privacy at the beginning, I am concerned that we will not be able to meet public expectations because the design might be halfway down the road before we figure it out.
DR. COHN: Jeff, actually let me try to respond to that. I actually fully agree with what you're saying, though I might take it a slightly different way.
I think we previously have suggested that you rejoin the Privacy and Confidentiality Subcommittee –
[Laughter.]
DR. COHN: -- and both John Paul and I were observing that this is actually part of the topic of next week's hearings, so –
MR. BLAIR: I'll be there.
DR. COHN: You'll be there? Okay. Tuesday and Wednesday and I will be there. And as my wife would say, no good deed goes unpunished.
DR. COHN: Yes, exactly.
DR. LUMPKIN: And we would also like to point out that we do have a model for privacy. We have the diabetes care kit sitting on top of the dog carrier.
MR. BLAIR: John, could you repeat your comments? There was some other –
DR. LUMPKIN: We have a model for privacy with the personal health records which was in Patti's presentation of the diabetes care kit sitting on top of the dog carrier.
PARTICIPANT: The Rottweiler security system.
DR. COHN: Well spoken, John. And Jeff, I may have to rescind what I said about that hearing schedule. It's February for those topics.
MS. FYFFE: February and March.
DR. COHN: Is it February and March? Okay. So, my apologies. It's next month, rather than this month.
But I guess my hope would be that at the very least, some of that would help inform this work as well, John, you commented that alert dogs do provide another level of security.
Anyway, any final comments, John? Do you have any closing comments? We're running a couple of minutes late and I do want to let everyone one go, including yourself.
DR. LUMPKIN: Virtually see everyone tomorrow, I guess.
DR. COHN: Yes, that's right. Well, John, I hope you start feeling better. We will adjourn in just a second and reconvene tomorrow at 9 a.m. The meeting will adjourn by 12 noon tomorrow. We'll have one panel and then further discussion. Well, thanks, everyone.
Okay. With that, we adjourn, and thank you very much.
[Meeting adjourned at 5:13 p.m.]