[This Transcript is Unedited]
Hubert Humphrey Building
200 Independence Avenue SW
Washington, DC
MR. REYNOLDS: If everybody could please take their seats, we need to get started. Are we on the internet and everything? Okay, good.
Good morning. I'd like to call this meeting to order. This is the second day of meetings of the National Committee on Vital and Health Statistics. The National Committee is the main public advisory committee to HHS on national health information policy.
I am Harry Reynolds, work at Blue Cross Blue Shield North Carolina, and Chair of the Committee. I want to welcome Committee members, HHS staff, and others here in person, also welcome those listening in on the internet. I would like to remind everyone to speak clearly and into the microphone.
Now let's have introductions around the table, and then around the room. For those on the National Committee I would ask if you have any conflicts of interest related to any issues coming before us today, would you please so publicly indicate during the introduction. And I have no conflicts.
MR. SCANLON: Good morning, this is Jim Scanlon, I am Deputy Assistant Secretary for Planning and Evaluation at HHS, and I'm the Executive Staff Director for the Full Committee.
MR. BLAIR: Jeff Blair, Director of Health Informatics, Lovelace Clinic Foundation, member of the Full Committee. And LCF is one of the nine original states and regions that have received an NHIN trial limitations contract.
DR. SCANLON: Bill Scanlon, Health Policy Research and Development, member of the Committee, no conflicts.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins University, member of the Committee, no conflicts.
DR. FITZMAURICE: Mike Fitzmaurice, Agency for Healthcare Research and Quality, I'm not a member of the Committee.
DR. SUAREZ: Walter Suarez with the Institute for HIPAA/HIT Education and Research. I am also a member of several of the national projects, including a Board member of the Health Information Technology Standards Panel, a member of the Technical Advisory Panel for the Health Information Security and Privacy Collaborative, and a member of the CCHIT Policy Privacy and Compliance Advisory Committee, and insofar as that might create a conflict, I so state.
MS. MILAM: Sallie Milam, West Virginia Healthcare Authority and West Virginia Health Information Network, member of the Committee, and an NHIN contractor.
DR. MIDDLETON: Blackford Middleton from Partners Healthcare Clinical Informatics Research and Development and the Center for IT Leadership, member of the Committee, no conflicts.
MS. MCCALL: Carol McCall, Human, member of Committee, terribly conflicted, but no known conflicts.
MR. LAND: Garland Land, National Association for Public Health Statistics and Information Systems, member of the Committee.
DR. FERRER: Jorge Ferrer, Veterans Health Administration.
DR. OVERHAGE: Marc Overhage, Regenstrief Institute, Indiana Health Information Exchange, a member of the Committee, and I see no conflicts with today's discussions.
DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente, member of the Committee, and no conflicts for today's discussions.
DR. GREEN: Larry Green, University of Colorado, member of the Committee, no conflicts.
DR. CARR: Justine Carr, Caritas Christi Healthcare, member of the Committee, no conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the Committee, no conflicts.
DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of the Committee, and no conflicts.
DR. FRANCIS: Leslie Francis, University of Utah, member of the Committee, and no conflicts.
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CVC, and Executive Secretary to the Committee.
DR. SONDIK: Ed Sondik, Director of the National Center for Health Statistics.
[AUDIENCE INTRODUCTIONS]
MR. REYNOLDS: Welcome everyone. You thought yesterday was exciting, hold on, we'll start with our first speaker, and I think seatbelts might be required. We look forward to that. What is always exciting, as we try to do, is it get people that have done in other places, we did that with a lot of our ehealth records and so.
Today, although Professor Severs introduced himself, I'll give him a formal introduction as the speaker. And he is currently the Chairman of the NHS Information Standards Board, which is the single assurance and approval body for the use of information standards within the NHS, and with its communicating partners in England. As well as being a practicing consultant, Martin is also Associate Dean of Clinical Practice within the science facility at the University of Portsmouth, and the Higher Education Institutions Representative Non-Executive Director on the Hampshire and Isle of Wight Strategic Health Authority. He has over 15 years experience in health informatics and was the original chair of the medical group initiator of the professional information advisory groups in their first iteration. He is also the UK representative of the Management Board of the International Health Terminology Standards Development Organization, and is its Chairman, IHTSDO, owns and manages SNOMED CT.
We have asked Professor Severs to come in today and give us a sense of how they have made this work over in the UK. So with no further ado, thank you. He is in the states for some other reason, and we were able to borrow his time, so we consider ourselves extremely fortunate, so thank you very much.
Implementing Standards: A View from the UK and IHTSDO
MR. SEVERS: Mr. Chairman, and members of the Committee, thank you for inviting me. I do have a conflict. I'm quite happy in the discussion period afterwards to tell you how I manage it. On the one hand I'm the gamekeeper, and on the other hand I'm the poacher, in terms of being Chairman of a standards development organization internationally, and in the UK I'm the Chairman of the body that formally approves standards. I can tell you how we deal with that, I'm kept out of the room and I take no part in it, and the appraisal, I take no part in any of the processes that go on.
Without further ado, I'm going to make the presentation over four parts in twenty minutes, and give you twenty minutes in which to cross-examine me, question me, or engage in discussion, whichever takes your fancy. I'm going to spend a little bit on context, because I believe the context that I'm going to set is very different to the context that you're used to.
I'm going to give you a perspective, a present perspective on it from the Information Standards Board for Health and Social Care for England. Then I'm going to give you a perspective from an International Health Terminology Standards Development Organization, an international developer. Then I'm going to give you some personal conclusions, I'm going to stress these are personal because they're not exactly straightforward and may be slightly controversial. Then we've got twenty minutes for discussion.
The first thing I want to say is that within the UK we have three levels of standards which we think about: framework, or of the high level overarching structure within which standards at levels can be derived or developed; the fundamental standards, which are the standards which populate the operational standards, which are the detailed and precisely defined standards for operational use within specific areas of the NHS.
The thing that will strike you as different during the presentation is that we belief the operational standards should have a clearly defined requirement that should be approved, it should have the specification of what the standard is, and every standard should be associated with organizational, technical, and clinical and user implementation guidance. If you want standards to be effective you have to implement them. You cannot just vote on them by consensus, you have to implement them.
In order to show that you've implemented them, there's got to be some derived conformance criteria to establish that they are being used properly, both organizationally, clinically, and technically.
Having set that context, the Information Standards Board for Health Social Care was setup originally in the year 2000. It is quasi-independent, in that my accountability and that of the domains leads in the various specialist areas goes to the Director of Information for the NHS, although my offices and support organization are hosted by one of the agencies NHS connecting for health – independence.
It has structurally evolved during that period, but I'm not going to go into the details, but one of the things I would urge to think about in any approval system is that it must evolve with time and with learning. We're the only approval body to the NHS and Social Care in England. We approve standards based on appraisal, that is explicit assessment criteria, which we publish plus value judgment, standards are often at the forefront, and you can't just raise an explicit assessment process, in the end you do need experts involved as well, so we call that appraisal.
And the evidence that we demand is from implementation evaluation. Does it work? We have appraisals from six different domains, and we don't necessarily use all domains on all standards, but we try to. These different perspectives are important because there's a need to manage tension. Political perspective might be at odds with the managerial perspective, which might be at odds with the public health perspective. The only way standards can be implemented out and effective is if you manage that tension of these different perspectives.
We focus on three key points: implementation, can it be implemented, implementability would be a better description of where we're at, interoperability, and safety. We internally manage the tension between the major stakeholders at the Board level where we have professional representation. The main organizations for auditing and scrutinizing the NHS organizations are also present, as well as the development side of the technical and statistics organizations within the NHS. They are all managed within the same Board.
One of the key messages, and I'll drill this one and I make no apologies for drilling on this one, the value of a standard only lies in effective implementation. The evidence is quite overwhelming that that's the case. Therefore, there are two different perspectives of what a standard is. The classic standards developer view of a standard dominantly it's a document specifying the nationally or internationally agreed properties of a good consensus process where everybody agrees.
We take a different view as a standards approver. A standard is a quality or measure serving as a basis or principle to which others conform or should conform or by which the quality of others is judged, i.e. you can only approve a standard if you've got some evidence that it can be implemented.
The NHS does take the second view, so the ISB is not acting in a way that's outside where the NHS view is of standards, but it is a different view to what you may have in your heads about what a standard is.
In terms of the work done by the Information Standards Board, you can see from this diagram that our workload is increasing year on year out. That's the volume of standards that's come through ISP since 2002. The majority of those standards are what I would describe as record classification standards, that is utilizing the content of a record for national purposes. If that is not done by automatic computer processing, that means that you have to have human transcription. Human transcription is a significant cost. And I'll come back to this theme as we go further down the talk. The bottom line is the demand is going up.
The second issue is the nature of the standards that are going through. At the bottom of your screen you'll see big blue blocks, those are requirements. And you can see when we started off people would come to us with large numbers of requirements. As you can see over time when we said that's fine, but when you present the draft standard this is the evidence that we would require based on this. The number of people coming with requirements has dropped considerably.
You will also note that the top gray boxes are significant in that they are getting larger. That is as we evolve and our understanding gets better, change to existing standards is a major piece of our work as we go forward.
These are just two examples to give you a flavor of the type of operational standards. The first you would probably be very comfortable with, which is utilizing data for payment for hospitals, ‘payment by result' is the word we use in England, and ‘SUS' is the secondary users service, which is a large database we have for all the data required that goes forward to the Center. Operational standards work well in the area of classification, and we're able to pay hospitals.
The other example I'd like to show is the example of the payment of GPs, family physicians would I think be the equivalent in the United States. You will notice that the language is different, we are now talking about referral patterns, we are now talking about outcomes to individual patients, we are now talking about prescribing habits to individuals, we are now talking about quality of care. We're at a level of granularity that is below where we were before. All this is based on a terminology called Read Codes Version 2, and as you'll know, Read Codes Version 2 are an integral part of SNOMED CT, SNOMED CT being the next generation on from the Read Codes.
But what you get for increased granularity of data, is you start to get at really key issues like quality of care, what prescribing habits are for individuals, outcomes for individuals, with a more sophisticated tool.
If I may move on to the International Health Terminology Standards Development Organization, this is just some basic information. And I would like to just thank this Committee for its report in December of 2002 where it did an analysis of various terminologies, and I'm delighted to say SNOMED CT came out very favorably in your report. But it did have a big question mark of the governance arrangements. I believe the governance arrangements now should meet your criteria more than adequately.
I'm not going to go through this slide, but to say we have an organization that gives you a flavor of what the nature of that organization is.
What I would like you to note is a number of key things about this. The association of SNOMED CT, not the individual members, but the individual members which are jurisdictions, and I am delighted to say the United States of America is one of those jurisdictions, govern the association through the Articles of Association. All authority is derived from that General Assembly: one member, one vote. They have a Management Board which I have the pleasure to Chair, and I have to appear before my General Assembly twice a year and account for the Management Board to actions over the last six month period. I have to present annual accounts, I have to face them and they scrutinize me, and that is something I find personally extremely uncomfortable, but I think it's absolutely essential in that standards development organization that is going to produce product that is going to be used for the care of our citizens, our family. I think the governance arrangements are absolutely essential.
Most of the decision making is devolved to the Management Board, and the reason for that is you need slick and quick efficient management, you cannot wait six months for decision making. So there's a separation between strategic management and good governance.
The Management Board is accountable, the General Assembly can if it so wishes at anytime say we will sack the Management Board forthwith, and can do so without notice. The intent here is that members do not have a property right in SNOMED CT that they could exert or exploit to disadvantage others. In international standards this is important.
Secondly, the IHTSDO decision making arrangements can be effective, responsive, agile and accountable both upwards and downwards to the community of practice. I think at least one of your members on this Committee has got experience of making sure that happens.
The vision and values are part of the explicit governance of the association, you cannot just say the nice words of openness and transparency and fairness, you have to live them. Members are countries through their designated agents. Members pay fees that are calculated on a trusted third party World Bank metric based on wealth and based on the ability to repay loans. We don't negotiate fees, it's by the trusted third party World Bank metric, there is no discussion about doing deals, I don't have any bureaucracy or any staff negotiating prices for membership fees. It's there, it's on the web, everybody can see it. There is one license, a single end user license, no marketing, no strategy, one single license, i.e. there is a commitment to the health of the citizen, not paying people to do administrative tasks if at all possible.
Affiliates within a country pay no fees to the IHTSDO whatsoever as part of the membership fee. There are no exclusions to that, anybody in the United States can use SNOMED CT if they have an affiliate license.
There are changes set by the IHTSDO for non-member nations. The reason for that is that we wish to not have loads of affiliate licenses and lots of payment schemes to individual vendors, we prefer a very simple one nation, one membership fee, and get rid of as much administrative overhead as possible.
So what have we achieved in less than two years? One, is that we've maintained the timely release of SNOMED CT twice a year, and a smooth transition from old to new owners. We have had to set up an international organization in the Danish legal system, which we've recruited and independently funded, which I think is also important in all of our offices.
We have designed and acquired and are about to implement a replacement tooling infrastructure for designing and building a SNOMED CT. And we focused all of the support service effort of improving the quality of SNOMED CT, which is a never ending task, but clearly one which people have said oh that little bit's wrong, that little bit's wrong, you have to listen to customer feedback, you have to improve the quality.
I just want to note that translation and RefSet modules, not so much about the RefSet, but translation and cultural differences are really important to address in an international standard. If countries don't feel that they have a voice, that there is cultural sensitivity to their needs, they will not participate.
We have to demonstrate and I believe do demonstrate a primary citizen focus. We have already set up a broad based license fee exemption for 49 low income countries. We intend to continue to have innovation around the primary citizen focus. We have attracted two new members, Singapore and Cyprus, and one other potential new member has made it public that they wish to join and that is Spain, and they're in the process at the moment.
The other point I would like to stress on this slide is that we have demonstrated a commitment to harmonization. Working to build a standards organization is not easy, both for them and for us, this is not a one-sided issue. There has to be give in order to rationalize the standards market, and with active liaison in eight organizations and practical work ongoing, which is why I'm in America with six others. Maintain financial balance and demonstrate openness, transparency, and fairness.
In the UK we're looking to have SNOMED CT in primary care systems, they're already starting to be rolled out at this point in time, which will continue. Within acute care the system actually applies, the big system is going at the moment – SNOMED CT inside.
Within health systems themselves, I believe that there are major risk cost benefits from international standard. For example, at the moment we are trying to support major policy initiatives around maternity and child health. Those sets of data need to be encoded in SNOMED CT such that the data can be collected from real patients in real clinical settings and used to help understand it at top level government, whether or not they're meeting the needs of the population with maternity and child health.
Now, that clearly is not an unusual agenda across the world, for example, in the United States. If the UK has already spent many hundreds of thousands, say millions, on that process, within the IHTSDO we have to make available resources of that nature to other countries. Once that is made available to another country, they can then utilize that data for start - and it cuts down their costs, and actually cuts down quite a lot of risk in terms of establishing whether that dataset can be collected, can be implemented in systems, and can deliver the information at the national level you need. That sharing is an important aspect of an international standards development organization.
So some personal conclusions, Mr. Chair. The first is: What processes are in place to ensure that a country has confidence in its own data? This in the UK was brought out by the Kennedy Report, which investigated major issues around data in the UK.
Does this variation in data reflect real differences in practice, or is it related to the information standards, or both, and how would you tell? I'm going to give you a little bit more detail on this in a while, and I'm happy to go into even finer detail in answer to your questions.
First, on fundamental standards. I believe the fundamental standards should ideally be international and internationally controlled. There should be as few of them as possible, and the owners, the organizations that own these, in my view should have certain attributes, which I'll go into. Why? I believe risk sharing for countries is important. Risks should decrease over time, not increase.
Secondly, cost sharing, cost reduction per country is really important. If one country has done an investment in a guideline for myocardial infarction, using for example SNOMED CT, it is ludicrous not to share that with other countries and give them a start.
The third thing is benefit sharing. We can utilize the operational work of other countries to help other countries, in fact give them away, dare I say it to other countries, to use as a start.
I think there has to be, and I'm not going to go through this slide so don't worry about that, but there has to be some duties of owners of international fundamental standards. There must be a strong governance process that ensures that it is safely maintained and remains fit for purposes. There must be a business model that ensures a funding stream for continuity. There must have a management process and resources that deliver timely, safe, and culturally sensitive, quality assured products that meet business needs.
I believe the requirements process should be open, transparent, and fair, as should the prioritization process. One or more countries, and indeed the managers, cannot dominate, there has to be good governance.
And there should be an electronic distribution service that allows for controlled access to all parts of the standard. There is no point putting a technical point out and pretending you've given it away free. Then actually the documentation enables you to implement it effectively costs an arm and a leg, and you don't get access to it. You have to put all parts of the standard out, such that everybody can access all parts needed for implementation.
Equally, I think there is a responsibility for any country that involves themselves in an international standard to engage with it. And I think overlaps in fundamental standards should be actively discouraged, and contradictions proactively removed. Therefore every international standards development organization should have somewhere in its articles of association, or whatever terminology that fits within a given jurisdiction, it has to stretch out to other standards organizations and work with them.
In terms of the big picture, one of the big learning points that has come out from the UK is this one. That we're all very comfortable in the human world with fashion or practice, in my case medical practice, but the whole issue of professional practice information management is a bit of a dark art. Is there anywhere in the world a national curriculum for recordkeeping? Everybody has a very eloquent policy statement for team-based care. Show me any country that has the professional practice recordkeeping standards for team-based care.
Organizational management people everybody's very aware of, but in essence that's about classification of data that already exists within records. Policy information strategies from policy needs to be though through.
My challenge at the fundamental technical level is I believe recordkeeping standards are as much an important part of fundamental information standards as anything else. I think a nation needs to be explicit about its fundamental record content standards, and I put SNOMED CT as one of those, I'll put HL7 Version 3 as another one of those. I think also there needs to be fundamental record classification standards, ICD-10, in England OPCS 4.3, are good examples. But there has to be a relationship that's machine processible, between the record content standards and the record classification standards, unless explicitly you want human transcription. And that is the decision that has to be taken on a national level.
Equally, the operational standards, datasets, electronic guidelines, care pathways, clinical communications, registers, all need to utilize the agreed national, and ideally international, fundamental standards.
More controversially I believe there should be a single point of approval within any nation both of the fundamental and the operational standards.
I believe, Mr. Chairman and members of the Committee, that benefits from information standards only accrue from appropriate and effective implementation. I believe implementation has technical, organizational, and user dimensions. Attention to acknowledging all these dimensions, in my view, personal view, in current information standards activities could be improved, in particular the absence of clinical governance is a significant concern.
Thank you.
MR. REYNOLDS: Professor, thank you very much, we appreciate it. And now I'm going open it up for questions from the group. Paul, Judy. Go ahead, Paul.
DR. TANG: Outstanding presentation. I think a key message on your summary slide is the notion that it is not a useful standard unless it's effectively implemented, and all the structures and policies and practices that make it so and how to evaluate it, the standard. That is really key and something we need to consider.
The other piece is the clinical governance, and presumably the clinical participation. And it goes back to your context, which is the clinical user. That is one of the problems we have in our SCOs is how do we get real clinical users to have the time and wherewithal and the patience to put up with this process so that they can be dutifully involved, but also so that you can have effective implementation and be driven that way.
DR. SEVERS: The challenge you set out is a big one. My issue here is that the science of clinical practice at the profession level has outstripped the science of recordkeeping at the profession level, such that the informaticians, the politicians, the managers, have no where to go for an authoritative decision. Let me just push this with some stories, because I think the stories are quite helpful.
What is the professional definition of a diagnosis, for example? Simple question. And where is the authority for that at the record content level? There is a definition of what a diagnosis is, for statistical purposes, for record classification level in some instances. So where do you go to get help? What is an established professional practice?
Another good example of the clinical definitions, one of my early experiences is from the very senior person in the UK civil service, taunts some big manuals and says look at the variation in death rate from myocardial infarction, how would you explain that with your extremely good data knowledge? And I said, What is the definition of myocardial infarction? Where is it written down? Where is it taught to any clinician? Where would I go to find out? There is good evidence from the research literature in England, there are at least three definitions in current use in the heads of clinicians, which could account for a 30 percent variation in the incidence of myocardial infarction, for example.
If we are going to have rigor, money, and effort into the computational element, we've actually got to have some profession-based. So it's not just individual, Dr. Tang, I think there's an issue here about the professions. If you're going to be registered as a nurse, as a doctor, as a physiotherapist, pharmacist, what are the standards of recordkeeping? What are the clinical definitions that are taught to you? Where do you go to find out where they have changed?
My challenge is not to the individuals. I think we have many, many, many able individuals. My challenge is where nationally do you get the formal professional authority that this is the way we go. And where do you go internationally for the same information.
Sorry about the long answer, but I think it was a difficult question.
MR. REYNOLDS: Judy.
DR. WARREN: Mine was just an acknowledgement. For those of you who may or may not know, I sit on the Quality Assurance Committee of IHTSDO, and had the pleasure of working with Martin for the last two years, and was the former chair of the nursing working group of the organization. And some of the things that Martin showed you on how organizations should behave I think are critical, because in the evolution of a U.S. organization owned terminology, to one that was owned internationally, there was a lot of conflict, and certainly huge amounts of fear. And I think some of the lessons that this organization has put together and has migrated from has alleviated most of the fear. And what you will begin to see coming out of SNOMED is a far better quality product, and there really has been a huge emphasis on creating the quality for that.
So as you take a look at these slides, and for our own use, I'd really focus in on that. And then just a personal thank you to Martin, because he has paid attention to me when I was very upset, calmed me down, assured, listened, and I think we're in a much better place both as an international organization and just as a standard as well.
MR. REYNOLDS: One last question, and then Blackford.
We feel your pain with Judy, Professor, we do, we truly can understand that.
[Laughter]
MR. REYNOLDS: So you looked at what you do, you've probably looked at what we do from afar. Can you make any comments on - so congratulations we just gave the job of billing us here - what would be the things that you would say are the things that we would have – would currently or would struggle the most with to get to the kind of things that you're talking about?
DR. SEVERS: I think a listing of the fundamental standards, both at recordkeeping, record content, record classification. And then managed interrelationships would be the key thing that I would insist upon at national level.
I would also recommend, because normal people don't understand any of the language of this, it's just way beyond them, in my view there needs to be a service so that if a department, a government department with a legitimate right, or in our case, I don't know what the equivalent is, the National Institute of Clinical Excellence, the organization that produces guidelines, needs to say we need this to be implemented in systems. There is a service that knows what the recordkeeping standards are, what the clinical definitions are, what the fundamental content standards are, such that this guideline, dataset, register, can be built and be used by humans and processed by machines, is a key service line structure, that I believe can transform the way ordinary people think about health informatics and about information standards. Because at the moment is still a little bit of a dark art. We need to get down to the implementation front and help people develop things that can be used in real life.
Those would be the two top recommendations I would make.
MR. REYNOLDS: Blackford. Thank you very much.
DR. MIDDLETON: I would like to echo Paul's comments. Thank you for an outstanding presentation.
I guess at Partners Healthcare you may know Howard Goldberg, and of course we're actually working on this problem of implementing SNOMED as the terminology service for the clinical information system infrastructure.
My question pertains to two dimensions of real live implementation of this now in practice. On the one hand the terminology, of course, still may not meet the needs of the average end user clinician. That is there are significant human interface issues, a long list look-up, and finally appropriate terminology across multiple axes, as well as compositional issues of putting things together in a way that makes sense clinically.
I agree with you wholeheartedly, and to hear you say the fundamental requirements start at the top with a business requirement and a clinical issue, integration issue, and a technical integration issue, you know, I commend you for that. I think however we have a long way to go, and I see you agree.
The second though is that there's a fundamental relationship between the standards and knowledge representation. As soon as someone begins to use the standard for defining knowledge, if you will, for example, we use the SNOMED infrastructure to define a subset of people we call diabetics, now here's the trick. It's not so hard to find the algorithm or to find a reasonable way to define the subset called diabetics, what gets tricky is when the reference architecture, if you will, from SNOMED changes under our feet. There are block shifts of terms from tree to tree, or axis to axis, and there is then this relationship between terminology management and knowledge management, which I think is not yet adequately discovered, explored. I would look to you for help in ways to make that easier as we are called upon to adopt these standards and use them increasingly in an in-depth way in our systems, how do we manage terminology and al the related parts like knowledge, first and foremost.
DR. SEVERS: First of all, thank you very much. I entirely agree with all your comments. That's not good enough. You needed an answer.
Can I just say just by way of a preamble, my top priority for the first two years at the Management Board was to build it and get where we are, and get a tooling infrastructure in place that enables to design and build and release mechanism, because the existing structure wasn't there, and I've got to get that implemented in next year. You will note that every document that will now be emerging from the IHTSDO as implementation, there is set of papers going – example, about refocusing around implementation.
There are two ways we're tackling this. One, we have the affiliate forum, which dominantly goes with an affiliate license. We're also setting up at this point, and we're not sure how to balance this, what we call an implementation special interest group, and that is all the – what we see going forward is that the majority of our effort is going to be in discussion with people like your good self. And the reason is, is implementation, the best source of real life issues that are going to improve implementation are from the people that are doing it, okay for real, and therefore those are the people we need to speak to, listen to, in order that we can then get implementation tools, we can get proper strategies of when we change the basic structure so there's a long warning time so that people can then work through it.
What I'm saying is I'm not laying out a set plan, what I am laying out is a set of processes of an organization that knows it has a challenge, is willing to shift its ground, is focusing its strategic intent on the implementation issue, and the dialogue with people who have real life business needs and priorities around implementation, in all of that we can focus our not insubstantial voluntary intellectual resource and our smaller financial resource into that very issue.
And I'm sorry I can't give you a definitive answer.
DR. MIDDLETON: One quick follow-up. I think this sounds great, and I'm happy to engage, and of course everyone around the table is equally happy to engage. I think just to put a fine point on the related question. It may be that actually terminology to management actually has to have a broader view of its role with respect to knowledge management. What I mean simply is suppose actually it was the terminologist's responsibility to define subsets of diabetics, then there would be a central authority, a central standard, and all the rest of it, as opposed to each implementation worrying about this issue. In that way we might propagate terminology and knowledge in a much more efficient fashion than terminology and then knowledge.
DR. SEVERS: Can I come back, Mr. Chairman, on that?
Your suggestion in essence is around an international health content standards development organization. I couldn't possibly comment in an organizational sense, but on a personal sense I receive it positively.
The second issue is around knowledge management. One of the issues that you will see with SNOMED is that I'm trying with my Management Board colleagues to encourage established international organizations that are viewed by the clinical communities as the authoritative international organizations to become involved in SNOMED as a special interest group. Because I believe that we cannot do the type of work that you are suggesting without good clinical governance of this is the right way to represent this, this does make sense clinically and this one doesn't.
So in that respect I've already got the World Association of Societies of Pathology and Laboratory Medicine special interest group. We're having ongoing discussions with the World Organization of Networks of Clinical Academes of family medicine in general. And we're also in the early stages of discussions with the International Council of Nurses.
MR. REYNOLDS: I have Mike, Paul, and Jorge, and then we need to move onto the next speaker.
DR. FITZMAURICE: Two questions. One you may have already answered, in which case the answer would be quick. How should the standards be structured? Is there a design? Should you be able to have a computer discover what you tell the computer you want? Like a clinical record Google, but in a standards development document, not in medical record.
Secondly, better development and use of medical records you're promoting, I like that. How would this use of coding affect the health of the patient, and patients like that one, I think would be paramount in most researchers' minds and maybe even in clinical minds. But you also ask how well does this describe the patient systems, diagnosis of symptoms, diagnosis and treatment, and my income. All these questions asked in the United States, is the same true in the UK, and/or in SNOMED that financial payment considerations, which is in need of some users, or maybe resource use, are considered in dividing categories and setting categories and coding.
DR. SEVERS: That is quite a portfolio of questions. It all depends on how you wish to pay your clinicians. If you wish to pay your clinicians on detailed clinical outcomes, then it does need to be recorded in the record. If you want to pay your clinicians on certain statistical labels, then you use the record classification system. I try to demonstrate that we are paying the GPs in England based on what's in their records, based on good quality of care and using a terminology. We didn't need that for the hospitals where you only need a classification of diagnoses in terms of primary diagnoses to match to an HRG system that we can use RCD type map to a grouping system, align it with a costing and pay that way.
I'm trying to be fair to your question, but the reality is if it's important that SNOMED is used for that purpose, then we need to demonstrate it is fit for that purpose given the specific use case that that individual member country wants to pursue. That is the first thing. So yes it is within consideration.
But if you look at our articles, it's about the health of humankind. It is what's in the record. SNOMED is about populating the record for the health of the individual. It's about that trusted relationship between the nurse and the patient, or the doctor and the patient, or the healthcare team. It is about recording accurately my health. Now, if you said to me should that be available to the patient, I would say yes. And I think one of the biggest stimulants that any system could have is that post-consultation the records should be available to the patient.
And one of the good things about having a structured record is that's enabled, and third-party data can be hidden because it's structured. So data that might cause harm and third-party data, which shouldn't be disclosed, can be hidden because it's structured and you can do that. So that is one of the ways.
And about the first bit of your question, because I missed that -
DR. FITZMAURICE: When we put out standards, whether it's SNOMED or whether it's HL7, is there a structure that you would recommend for the standards so that you know where to go look for things, that there's a heading like this pertains to the diagnosis, this pertains to -
DR. SEVERS: Yes, okay. Because this is a spectrum between the clinical profession recordkeeping standard, say in England all the Academies of Royal Colleges have just set a standard saying that if anybody is admitted to hospital these sections need to be in the record. If the new dataset is going to be produced by NIST on a guideline, I would expect it to be structured in the same way such that it can be implemented in the record, such that you could already pre-populate a record electronically, with the required data items. Now we then change clinical practice from recording everything, to recording some things and validating other things, because we're already pre-populated it.
So, for example, the spironolactone debacle, where we actually had the fourth line agent name spironolactone for treatment of heart failure, all the research which was beautifully well done had a large number of exceptions. If they had been corded up when the guidelines, the use spironolactone came in, you could have had the decision support system, as my colleague Dr. Middleton just pointed out, built into the system such that all the exceptions could have been flagged, and we wouldn't have got the situation whereby through no fault of the clinician or no fault of the policymakers the 199 exceptions which no human being could ever remember, would have got inside the system. So I believe the use of terminology, especially around decisions that can be of enormous help. Equally the chief medical officer may make a statement, another benefit, that everybody with chronic respiratory disease, for example, should have a flu vaccination. Great, what does that mean?
Unless you have a terminology which every instance in the record that could be described in a respiratory disorder, or chronic respiratory disorder, so you may then have your chief medical officer instead of writing out just a paper document may send out a piece of software that enables every user, every general practitioner in the country to load it up and identify all those patients with chronic asthma in the record, chronic bronchitis, emphysema, all of the record content items which are necessary to have which would map to the global chronic respiratory. So there are massive benefits in terms of using detailed highly granular information.
MR. REYNOLDS: We have Paul then Jorge and then we're cutting it off.
DR. TANG: So Blackford talked about going a level down from the SNOMED terminology to feed into the clinical report. And you talked about getting the information in the system. Now I want to talk about getting the information into the system. And I am also going to pick on the risk carrying, risk down the time, costs down the time, and sharing the work of others.
So to do this I'm going to take an example from an organization I don't belong to, Kaiser, for two reasons. One, I can then say something good about it, and two, since it's not my asset I can give it away.
They have something called CMT as an interface terminology to SNOMED, as an example, and that is to facilitate getting information into the system, and then by which we can derive value. Do you have a way of having Kaiser share its what's called utilize the operational standards of others, using Kaiser's operational standard to help enhance the overall value to all countries? Clearly, Kaiser would have to be rewarded for that.
MS. MCCALL: It's a reward unto itself.
DR. TANG: That's right. Is it possible to encourage that? Is there a way to do that?
DR. SEVERS: Our Articles of Association are 75 pages long. But what you are describing is a culture, and within the Articles of Association if that interface was owned by the United States then there is a way of bringing it up to the international level. So extensions of SNOMED can be brought from a given member to the international arena. But with that right becomes responsibility. This is a difference. So anything that we take internationally we have to pay for and maintain, but we can do it.
But the question you wanted was a level below that, which was Kaiser. And Kaiser has an interface technology, and the issue is that if – first of all it would need to be deemed to be a very useful thing for the United States, and if Kaiser then took it to the national level and everybody was happy then there is a mechanism by which we can get that shared internationally within our Articles of Association.
I say that with a caveat because I don't know exactly what we're talking about, but the mechanisms exist within the Articles of Association for taking things up. But we can't just go to a colleague who has developed something a derivative of SNOMED, we can ask for it, they can say no, we can ask for it and they can say yes that's fine, but we cannot go in there and take somebody's life's work who have done a derivative of SNOMED and spent millions and just take it off them, no we can't. We can ask them, but we can to a member, we can to the United States, we can to the United Kingdom. Actually we've never had to. As soon as somebody else says oh that would be really useful to me, people want to share and want to make it available because actually it helps everybody else because it's a quid pro quo.
DR. FERRER: - hair you have with your responsibility, but Harry kind of asked you a global question, asked a strategic way to follow in the U.S. with regards to standards. My question to you is based on your experiences, oftentimes we speak about core standards, building blocks that must be there for you to build upon sort of long term, but it seems that your view of your experience has been even though you recommended the interdependencies and relationships that you are more focused in making the core framework, house, if you will, interests built, as opposed to having to do all the standard work harmonization. Is that a correct assumption? Or based on what you've seen in the UK, how would you explain that?
DR. SEVERS: With my UK hat on, unique identify the NHS number, we have worked very hard through the information standards to make that happen, because it's a fundamental standard, it was a requirement, and we pushed very hard for give us the implementation evidence that you can do it and then we'll approve it, and the NHS has responded through NHS connecting for health. And there are a set of project milestones in which the NHS number unique identifiers is getting implemented.
With my ISB hat on there are a number of other standards that I'm interested in making sure come to fruition.
With my international hat on, I spend about a third of my time on harmonization. The harmonization is tough. I can write the minutes, I can produce documents, I can setup teleconferences, I can throw the weight of – I can have enthusiastic colleagues, but if the other organization doesn't want to play I can't make headway. This is a relationship between two parties. And even if my members say, look, it's absolutely fundamental, we have a relationship with this standard, get it sorted, and I work all hours God sends to try and do that, if the other organization doesn't want to play there's nothing you can do. And that is where national pressure can start to work in the international – if you've got an organization that's made up of national members, and every national member is saying you need to work with this other organization, this other organization won't play ball, they can start using their national might together to influence that organization. But I spend I'd say a third of my time is on trying to work with other organizations to make it easier for the implementers and the users to get benefit from standards, such that they're not overpowered with the complexity of making two standards work together.
MR. REYNOLDS: Judy, I understand you have a clarification, not a question.
DR. WARREN: I think this speaks to some of Blackford's concerns. There are strategies for getting changes into SNOMED, and one of those strategies is belong to a working group, which is open to anybody who shows up, we're always willing. The other strategy is to go through the U.S. terminology entity that is part of the country's working group, and that is being housed in Betsy Humphrey's office at the National Library of Medicine. So you can contact her about funneling in concerns, requests, etcetera, that needs to go forward up to the international level.
DR. MIDDLETON: Even better, we have Howard Goldberg, one of my guys on the content committee.
MR. REYNOLDS: Professor Severs, outstanding. Thank you. We felt we were fortunate before you spoke, that we had you here, and I think you lived up to your billing, and I've heard a lot of good compliments.
[Applause]
Health Statistics for the 21st Century
MR. REYNOLDS: Next we're going to talk about the health statistics for the 21st Century and get an update from Dr. Daniel Friedman, who introduced himself shortly ago and was a previous member of NCVHS, so he knows the drill here.
Then I understand we have Dr. Parrish on the phone; is that correct, Dr. Parrish?
MS. JACKSON: He hasn't plugged in yet.
MR. REYNOLDS: Dr. Friedman, please feel free to begin when you're ready.
DR. FRIEDMAN: Thank you. I would like to be respectful of the Committee's time, so it would be helpful if you could give me an approximate timeframe for how long you want me to chat.
MR. REYNOLDS: How long is Dr. Parrish going to chat?
DR. FRIEDMAN: He's not going to be chatting at all.
MR. REYNOLDS: Okay. If you can talk between now, you get the next 25 minutes. And that will leave us some time to have some questions. I want to make sure what you have done in the past, are doing now, and are going to tell us, and we have a chance to ask some questions.
DR. FRIEDMAN: Very good, thank you. That will be more than sufficient.
I'm going to be speaking about three things. First of all, quickly reviewing the 2002 report on Shaping a Health Statistics Vision for the 21st Century. Second, even more quickly, describing the project that Gib Parrish and I have been asked to undertake. Then third, asking Committee members to engage in a very brief exercise to review the recommendations that the Committee itself put forth in 2002.
The 2002 report, Shaping a Health Statistics Vision for the 21st Century, was a product of three partners: the Committee itself, NCHS, and the DHS Data Council. And Ed Sondik approached the Committee in 1998 or 1999 and asked us to undertake this process. The report was written by Gib Parrish, who at the time was a senior epidemiologist at CDC. Gib has since left CDC, and he and I do most of our independent consulting together. It was written by Ed Hunter, who at the time was Assistant Director of NCHS and is now the Acting Director of the CDC Washington office, and by me.
The process that we undertook to develop that 2002 report spanned around three years. It started in 1999, and on your left you will see a list of roughly ten professional meetings, at which we presented the various stages of the report and the report processes. At all these meetings we sought feedback on what we were doing.
In 1999 the Committee asked the National Academy of Sciences to do a workshop on the topic. The Committee commissioned a series of papers from authors in the U.S. and Canada. In 1999 and 2000, the Committee undertook a series of local discussion groups around the topics of what ended up in the report, and also a series of expert discussion groups here in Washington.
In 2000, an interim report was developed. Based on that interim report there were four regional public hearings held throughout the U.S. During those public hearings and afterwards we formally solicited recommendations from the participants in the vision process. Looking back on it, it did not seem like such an exhausting process, but at the time it must have been pretty exhausting.
Finally in 2002, the joint report of the Committee NCHS and the Data Council was produced, and then included in that report but separately were the NCVHS recommendations. In that report, and I just want to spend a couple of minutes on definitions, because one of the things we found throughout this process is that there was a dearth of the most basic definitions. So one of the things that the Committee did, the partners did, was start by defining health statistics. Now, this seems very simplistic, but again, it was something that really had not occurred in the literature previously. And we defined health statistics as numerical data that characterized the health of a population and the influence and actions that affect the health of a population. So this is population based data, not individual based data.
Second, we developed a concept and defined the HHHhealth Statistics Enterprises, the infrastructure and activities necessary to produce health statistics, with its mission being to efficiently provide timely, accurate, and relevant information that can be used to improve the nation's health. The Health Statistics Enterprise collects, analyzes and disseminates data on the health of populations and the factors that influence health, again, a community health focus, a population health focus, not an individual health focus. The Health Statistics Enterprise includes public and private organizations and individuals that perform the processes of health statistics at all geopolitical levels. And the Health Statistics Enterprise, and it is currently constituted in this country, is highly decentralized.
There were two conceptual frameworks that were developed through the process, and that really formed the backbone of the report and formed the backbone of the recommendations. The first conceptual framework was a conceptual framework of influences on the population's health. We developed this framework in order to help maintain a focus on needed data, and data that is needed for the Health Statistics Enterprise. As we will see in a moment, that conceptual framework, again, it focuses on communities, it focuses on the context of communities, it delineates major influences on community and population health, and it emphasizes the level and distribution of health.
This is a high level view of that framework. In the center you will see Gib and I and Ed Hunt call this the Rings of Saturn diagram. In the center is the populations health, surrounding it is community attributes, then context of community attributes. Then finally those are all put in place in time.
Now, purposely this conceptual framework does not include any causal arrows. This was not an oversight on the Committee's part, it was not an oversight in NCHS's part, it was not an oversight on the Data Council's part. We purposely left out causal arrows because we felt that for the most part causal arrows are really highly speculative. And there are certainly other schematics of populations health where you can find many, many causal arrows. This is just a drill down view of that conceptual framework, and you will see in the center the populations health defined in terms of level of health, distribution of health, disease, functional status, and well-being.
We recorded a great deal of information through the consultative vision process, and one of the things we did was using that conceptual framework come to the conclusion that the health statistics in this country has a great deal of unrealized potential. The causes of that included our using often a narrow definition of population health, focusing on individual health rather than community health, focusing on disease rather than functional status and well-being in addition to disease. Limited vertical and horizontal integration of data, insufficient longitudinal and lifecycle data, and then finally a real disparity between data availability on the one hand and data use on the other.
The results of this were essentially abundant data, but much too little information, and particularly too little information on cultural and political context, community attributes, appropriate measures of health, and geographic and sub-population data.
In addition to that conceptual framework of the populations health, another conceptual framework that was developed by the Committee at the time was of something we called the health statistics cycle. This was developed because we felt that it was important to have a conceptual framework to help maintain a focus on needed components of a rational health statistics cycle. And the health statistics cycle as we defined it is really very simplistic and is quite obvious. The health statistics cycle focuses on defining user data needs, identifying data sources, translating data into useful statistics for users, and evaluating the extent to which user needs are met. I just want to repeat that last, which is evaluating the extent to which user needs are met.
In the center of that cycle, as you'll see, is something we called an integrating hub. And integrating hub would perform, it does not now perform, but would perform functions of coordination, stimulating collaborative efforts, setting standards, resetting visions for health statistics, generating new methods and approaches, and establishing frameworks and standards for privacy, confidentiality and security for the health statistics enterprise.
And again, the Committee found based on the consultative process, that the health statistics enterprise in the U.S. has a substantial unrealized potential. And in particular, that existing enterprise-wide coordinating and integrating efforts, this is back in 1999 to 2002, were largely ineffective with insufficient connections between data sources, data collectors, and data users, insufficient attention to developing consensus approaches in standards to simplify collection protection and use, insufficient resources, lacking in overall confidentiality and data sharing framework flexibility and adaptability, and enterprise-wide form. And then finally, this all resulting in an undue burden, a substantial burden, and possibly an necessary burden on the data sources themselves.
After the consultative process after reviewing the information, the Committee and its partners developed a series of ten guiding principles for recommendations. The first of those principles is focused on the need for health statistics enterprise-wide planning and coordination. We spent a substantial amount of time on that in the report, and I would say of all the principles and the recommendations, those relating to enterprise-wide planning and coordination were probably I don't know if I would say the least popular, but probably the most controversial.
The second guiding principle focused on the need for broad collaboration among data users, producers and suppliers at all governmental levels. Third, need for rigorous policies and procedures for protecting privacy, confidentiality, and security. Fourth, flexibility to identify and address emergent health issues and needs. Fifth, use of data standards. Sixth, sufficient detail at different levels of aggregation, different governmental and geographical levels. Seven, the need for integrated streamlined data collection for multiple purposes. Eight, timely production of valid and reliable health statistics. Nine, appropriate access to and ease of use of health statistics. And ten, continuous evaluation.
NCVHS developed the recommendations based on those ten principles, and based on the consultative process. And just to quickly repeat, the recommendations were developed through an iterative process with participants in that three year long process. We developed the recommendations through formal consultations and formal solicitation of recommendations, and then finally having the recommendations and the draft recommendations reviewed by the participants. So it was I wouldn't say it was a comprehensive process, but it was a somewhat exhaustive process.
There were 30 recommendations that were produced for achieving the 10 guiding principles. Then there were 6 recommendations produced for moving toward adoption of overarching conceptual frameworks. And the recommendations related to the Health Statistics Enterprise structure itself, dataset development, data standards, privacy policy, data access and use, training and evaluation, and finally the research agenda. That is a very high level of the 2002 joint report, and the Committee recommendations flowing from that report.
Gib and I were asked to undertake a modest project to reconsider that report, with the project focusing on assessing progress since 2002 on the vision recommendations, and focusing on updating, reconsidering, and revising the vision in light of national and international developments since 2002. The first phase of this modest project has been funded, and we're very pleased by that, and it includes first of all a literature review, second, a series of expert interviews, and third, iterative review of findings with the Committee and with Committee staff.
The timeframe for this first phase is first of all in late May coming up with a series of suggestions for updates to the report. In June, providing to the Committee a preliminary assessment of progress since 2002 on those recommendations, and discussing with the Committee possible changes to the report. Then in September, a draft working paper on expected change to the vision and recommendations for any future workshops or public hearings. Actually producing any kind of an updated or changed report itself is not part of this phase of the project.
One of the things I discussed with Don Steinwach and Marjorie and Debbie, was trying to obtain some guidance from the Committee, hopefully today, on which recommendations Gib and I should focus on. This would be very helpful to us, because there are 36 recommendations there, as somebody said or implied in the Populations Subcommittee this morning some of them are a bit dusty by now. And we would like essentially off the cuff simplistic reaction from the Committee members, and there is a little rating sheet, high, medium and low, for each of the 36 recommendations that either has been passed out or will be passed out, and we would like you for each of those recommendations rate each of them in terms of your perception of continued importance. And the kinds of criteria, and we're not dictating criteria, but the kinds of criteria that we would think of would include current relevance, intersection with e-health and long-term importance.
Initially we had this, or at least I suggested this very complicated framework, three or four different dimensions for rating each recommendation. My friend and colleague Gib, who is very good at reducing things to their essence, basically said let's keep it simple, let them use whatever criteria they want, let's just have them rate each as to high, medium, and low. Based on those ratings and based on continued discussion with the Populations Subcommittee and Marjorie and Debbie, we can then proceed to focus.
So thank you very much.
MR. REYNOLDS: So you want this filled out right now, is that what you're saying?
DR. FRIEDMAN: That would be terrific.
MR. REYNOLDS: What I would like to do is see if we can be letting people ask questions as we're doing that, because we'll double-duty here.
MS. GREENBERG: Let me just say at the bottom of the third page it says your name. If you don't want to put your name, I don't know why but you might not want to, at least put whether you are a member or staff. The staff or liaisons or whatever are more than welcome to fill this out also, but I think if you're not putting your name we want to know whether you are a member or not so that we can at least separate that information out.
MR. REYNOLDS: What if we don't know enough about some of the constructs to actually vote on one item?
MS. GREENBERG: Leave it empty, I guess.
MR. REYNOLDS: That's fine. But you're asking us to do something, I want to make sure I understand.
DR. FRIEDMAN: That's fine.
MR. REYNOLDS: Okay. Jim, and then I got Carol, Leslie.
DR. FRANCIS: When I fill this out one thing I can be thinking about is how important the criterion is. The other thing I could be thinking about is how important it is to pay attention to it right now because I think it's inadequate. And I want to know which you want me to be thinking about. Because something could be really high priority, but I could think that what got said in 2002 was fine.
DR. FRIEDMAN: That's an excellent question. What we're looking for from you is guidance about what we should spend our time on over the next several months.
MS. GREENBERG: You might put that slide back. But I think current relevance, intersection with e-health, and long term importance are I think guides.
DR. FRIEDMAN: Any other notes you want to put down, I feel like this is getting grades by my students, any other notes you want to put down feel free.
MR. REYNOLDS: Jim.
MR. SCANLON: I guess the only thing is I would, you know, recommendations flow from a process of consultation, assessment, clear goals, assumptions, and participation by all stakeholders. And then you have it, so you diagnose, you assess, you make recommendations. And I would hope that these summary ratings here are not going to be used in determinative, I think it is a good idea to revisit in the light of current circumstances. But I wouldn't want to see, I mean we're basically starting with the previous recommendations, and I hope that's not determinative in terms of they would be – recommendations as well, and I don't think most of the Committee members are familiar with that either. I wonder if there's not a more – in other words, this is fine for sort of qualitative impression for you and Gib, but if you really want to know what folks would like to see prioritized or maybe new things in the future, I think you just need more consultation than the rating. I guess that's my only point. And you need to talk to stakeholders.
So I think this is meant to be a qualitative kind of input into the process, but it shouldn't be formal views of the NCVHS in terms of a vote. This is purely qualitative -
MS. GREENBERG: No, I mean, these recommendations came out of a deliberative process that you mentioned, Jim, but it was what, eight years ago, seven years ago.
MR. SCANLON: That's my point.
MS. GREENBERG: Because we don't either have the resources or probably the time or even the stomach to completely go back to every single one of these, what Gib and Dan want to find out is – because we've been talking about this vision and different people are more familiar with it than others, but for years now is which of these you really think, you know, I was going to say we have limited time to do that kind of deliberative process, and really the real consultation, though there's some consultation in this first phase, the real consultation and maybe the workshops or hearings or whatever would be in the second phase that we haven't yet funded. But now where do you think they should sort of focus their energies, and this is I think going to be impressionistic, not statistical.
MR. SCANLON: And not the specific recommendation, I hope. It's thematic, again, you want to consult with the policy community and others as well, it's eight years later. So I guess with the understanding that it's meant to be thematic and qualitative, I mean you're not literally asking people to rank the old recommendations, why would we do that?
MR. REYNOLDS: I guess from a process standpoint, I would consider this exercise that we have been asked to do as nothing further than input to the Populations Committee to do their normal deliberation as they would do with anything, and make a recommendation and bring it back.
So, Don, if you are requesting.
DR. STEINWACHS: I think what we thought was this was a way to get the Committee quickly sort of thinking about what are the recommendations, what is the content, and just to get some initial feedback. So I hope it is stimulative to the members as well as it is input to the Populations Subcommittee.
MR. REYNOLDS: Right, but I want again back to process. And that is what I think – this is going through the end to your guys, and then you'll bring it back up through the normal process. Okay. So with that, I have Carol, Leslie, Mike, or Leslie's done, Carol, Mike and then Justine. Justine.
DR. CARR: I just have a suggestion, that if we each put our top five thematic important areas as high and then go pick the ones that are – and then also maybe the five lowest and everything else, I think maybe that would help.
MR. REYNOLDS: With that please continue filling out your process here. While we're waiting for everybody to finish, I think with all the activities that have occurred over the last month as far as how thing are going to be changing in health IT and others, this is a really good time to take a look at how this all comes together, so glad to have you working on it for us.
DR. FRIEDMAN: Thank you.
MR. REYNOLDS: Okay. When you are finished, are there any other questions for Dr. Friedman before we move on? Okay. Then Don and Bill, we'll assume you have the ball working with Marjorie and the two doctors and Debbie, and we'll be anxious to continue to hear from you.
Thanks again.
With that, let's move onto the NCHS and BSC Updates. Jim, are you on the phone? Jim Lepkowski.
DR. SCANLON: We were depending a bit on Jim.
MR. REYNOLDS: I can make a few comments, if you want to wait a minute until he might get on. Bill, I have just a few regular comments, if you are counting on him we'll give him a minute more.
DR. SCANLON: Fine.
DR. STEINWACHS: Virginia said it's a technical problem, he can't un-mute his mute button.
MR. REYNOLDS: Okay, Bill, so you have the ball, and you get to run with it.
DR. SCANLON: What we were going to do, and Garland can help me on this, which is one issue that we haven't talked about before in any detail that BSC was interested in bringing before this Committee was the use of electronic health records in the vital statistics system. It is a topic that they discussed at their last meeting, and the reason why I'm dependent upon Jim and Garland to talk about this is that I wasn't there for that discussion, so I can't report on it.
So, Garland, you may want to talk about this issue and then we can return to broader issues.
MR. LAND: I wasn't at the meeting either, but I can talk a little bit about what I know about it.
I know the National Center and some of my staff have been involved in and looking at this whole area, and developing a main analysis model, a functional analysis of how to import medical record data into electronic birth and death systems.
I think there's a lot of potential, but I think there are a lot of issues involved in that that really – I'm cautious, let me just say that. I can give you several different reasons. Presently what happens is take the birth certificate, the information comes from the medical chart, which can be both that was from the prenatal record or from the record in the hospital. And also it is from information that comes from talking to the other, so all the information isn't going to be obtained otherwise you would have to interview the mother to get some of the information. So it really comes from three different sources, so you have to take that into account.
I think what they're coming up with and realizing is it's highly unlikely that all information can be transported from the electronic medical record into birth certificate. There are legal reasons, there might be what's in the medical record may not be what you want the name of the individual to be on the birth certificate. So you have to accept there are some legal ramifications of that. There are issues of – that isn't in the medical record, so as I understand there is especially the fact that this thing might not be a 100 percent approach.
I had a lot of concerns about how do you edit the data. Right now since the data is being entered manually into an electronic system, you can create online edits as you are going along. But if you are pulling data in from someplace else, once those edits are ticked off then it means going back and trying to find where that information came from, and if somebody isn't very careful they will just go ahead and accept the data rather than now there is some manual review going on. Since the birth certificate is not only a legal document it's also a statistical document, the editing function is very important, and it could result in having data this is different in the electronic medical record than what is in the birth certificate. And those issues have to be resolved. Is that okay, is it not okay, and what are the legal ramifications of doing that.
On the death certificate side you don't have causes of death typically in the medical record, in the standard way that causes of death are entered onto a death certificate. So that would mean changing the whole format of the medical record to align it the way causes of death are entered. That is a whole other process of thinking about what the medical record is suitable for, and is that the best way to get it into the death certificate.
There have been several state experiments along these lines and they have not been successful. And I can give you a lot of different examples of this. I think that's another cautionary note because this has been tried. Maybe it hasn't been tried to the degree of setting the standards and everything like that. What's going on now is trying to set up some HL7 standards for the transmission of what's in the medical record to the birth and death certificates.
For that reason I think it's a process that needs to go forward and evaluate as we're going along, and certainly it's going to take a couple of years down the road just because it's a HL7 standard setting process itself it takes time. We just have to be cautious, and the substantive evaluation measures has to be moved down this path, in my personal opinion.
MR. REYNOLDS: Jim, then Marjorie.
MR. SCANLON: Garland, how does this - whether or not the medical record is the source of generating the vital statistics certificate, it doesn't have to be, by the way, as you know, you are still supporting the concept of electronic birth records.
MR. LAND: Oh, absolutely.
MR. SCANLON: So whether the medical record is the source or not is not so much, you know, you can't forward it particularly, it may not just be a fit.
MR. LAND: Yes.
MR. SCANLON: But secondly, how does this approach fit into the whole Patriot Act requirements for security in national systems for electronic vital statistics and so on? It envisions some sort of a system where every state could, a standardized system where every state could check with every other state, and that sort of thing, it doesn't fit at all maybe.
MR. LAND: I'm not sure that the concept of electronic medical records going to the birth certificates if it fits into the intelligence format, or Real ID Act. Certainly there is a national need to secure birth certificates better than what they are now, because the birth certificate serves as the breeder document to get a driver's license, to get a passport, and there is a lot of fraud going on now in terms of birth certificates, unfortunately.
So we do recognize that there has to be more attention paid to that. Some of that is through electronic means, and we are implementing an electronic system called “EVE” through the Department of Homeland Security funding that we just got actually this last week, that will validate a birth certificate. So if somebody wants to know if this is really a legitimate birth certificate, we have an electronic way of doing that now, and we'll be implementing this system over the next couple of years.
There is also a lot of standards that need to be developed in states around the security of the paper when you're issuing a birth certificate, in terms of how internal standards within health departments and how they operate. And we're in the process of doing that, but we don't have any teeth, that's where the regulations if they were ever promulgated would give some teeth to that process to ensure that states are conforming to certain standards.
MR. REYNOLDS: Marjorie.
MS. GREENBERG: I just wanted to add that I think Garland has raised a number of very legitimate issues which I don't disagree with about what some of the challenges will be in trying to use electronic health records for either birth or death. I think to me it's quite clear that they have a use, but that doesn't mean that it's just whole scale going in. I mean if there is an electronic prenatal record it seems that could very well inform the birth record. That doesn't mean that it would replace it by any means, or that it would meet all the needs, unless it was engineered to do so. And that is the point that I'm coming to.
But the same thing, if there were a longitudinal health record for a patient you think about if that were used by the person certifying the cause of death that would be about by many orders of magnitude more information than most people have when they certify causes of death. So that doesn't mean the record itself for that last hospitalization or whatever would tell you what the underlying cause of death was, because in most cases it wouldn't. I think the use of them is there.
But the point I really want to make is that if we don't design our electronic health record systems to meet this critical need, which is really what I call the bookends of your electronic medical records, your birth and your death, with everything else being sort of in between, and don't design our electronic birth and death registration to benefit from those electronic health records, then it will be very hard to retrofit.
So I think this has to be something that we're looking at upfront rather than later. Ed may want to add to that.
DR. SONDIK: The way I see it, we're talking about something that is a system that is fundamental to what we know about health, key measures. A recent IOM report that I mentioned in the Population Health Group this morning came up with twenty measures that are going to go into a national system of reporting on a variety of aspects of life in America. Health is a very important part of that. You look at the twenty, about half of those, probably about 40 percent of those relate to the vital statistics.
We currently are not – ‘we' being NCHS – we are only minimally investing in that system to build a system, talking about the 21st Century, that really is 21st Century. There are a number of issues that need to be dealt with to how to make the system more efficient, how to move the data more rapidly, how to build timeliness, how to increase the facility to do quality control, how to maintain security, how to notify Social Security more rapidly, how to get information to a form where it can be used by other agencies within the states and other agencies in the federal government that matter, how to make it more accessible for research.
And we need to invest in it in order to do that, and we at NCHS have just not had the resources to do that. At our last BSC, as we have on several other meetings before that, we talked about where we were in the state of this, and that we were talking about budget, and that for fiscal '09 we had to make some cutbacks in order to be able to – because under fiscal '09 as of today we're on a continuing resolution, and in order to be able to meet that budget we had to cut back on programs, and we did, we have done that in a number of areas including the health interview survey.
One area that I felt strongly that I didn't want to cut back was in vital statistics, and at the same time I felt very strongly that we need to invest in it for the future. We had proposed that we would in order to do that cut back on the amount of data on the natality side that we were collecting, thereby paying the states less, and use the difference between what we would have normally paid and what we were paying to invest in the system for an electronic vital statistics system, and also related to quality control. We had plans to do that as of January. We in meetings with Garland, with NASAS and with others and other stakeholders in this, they said they felt it was important that we hold off on that, that the budget situation may change. I felt that was a prudent thing to do. So we haven't done that, we're still in the process of about I guess beginning negotiations related to our contracts with the states this year, so we will see where we go.
I guess my very strong feeling is that we need to invest in this system. There is potential for the Stimulus funds to be used for this. The constraints on those funds, that they're time limited, they're not continuing funds, they are not going to add to the base appropriation of any agency, that they relate to jobs and will really be an economic stimulus, and of course that they have a health impact, I think really all applies to this particularly given the fact that one of the areas in the Stimulus funds is electronic health records. There is no doubt, I completely understand what Garland is saying, I think as Marjorie said we need to find a way for these to actually work together. It may be that in some areas it will be more flexible than it is in others, depending on what's in the record.
I think Garland's point is very well taken, and I honestly don't see that somehow the information will come out of the medical record and into the vital statistics system. There are things that are just going to have to be added or perhaps edited at that time, because of the special nature of the vital statistics system.
But the timeliness and the quality of the data is of national importance. I don't have to get on a soapbox to say probably the two most fundamental measurements about how healthy we are in the U.S. come from the vital statistics system, and it's important that that be of the highest quality that it can be, and that we are able to link that information as much as we can to other sources of information [microphone interference], on prevention and wellness, actions, and status of the population, linking all of that to the vital statistics. That I would see would require a considerable investment, but a very feasible investment. And that's what we talked about at the BSC.
MR. REYNOLDS: Larry then Paul, then we'll break for lunch.
DR. GREEN: I want to allow Bill to fix what I'm about to say and sort of make it contributory.
My take home from the Populations Subcommittee meeting this morning, was really a spring off of Garland flagging yesterday at the end of our meeting, the issues afflicting our vital statistics system. And my take home from our discussion this morning was that we recognize the following: number one, the state of vital statistics health system in the country is in jeopardy, it is not healthy, it is not a healthy system, and it's usually important.
A second thing I thought was a take home lesson was the Stimulus Bill specifically makes resurrecting this issue timely, perhaps for several reasons. One of which was there is going to be a great need for accountability and it is stunningly difficult to think about fundamental accountability with no vital statistics. So it connects to an important political issue at the moment. Also, it's been well-studied, it's well-developed, there is a great deal of knowledge about what needs to happen with the vital statistics system yesterday and as soon as possible, and it could repair work and further development could be done very quickly if there were action on this.
Then the third issue that I feel like is sort of just confusing this right now is Populations Committee recognizes that Dr. Kolodner's challenges and issues, and the distribution of the EHR, and the development of the national health information system is presenting us with uncommon, unusual, and maybe unprecedented opportunities to enhance and improve the vital statistics function.
We were thinking we ought to do something like now, like this week. Now, Bill, would you please fix that so I don't do any damage.
DR. SCANLON: I don't think you did any damage at all. I was going to end by saying that we planned this afternoon if the opportunity is available to try to bring forth a letter that would talk about which addresses these very issues. And I think of it as going beyond the vital statistics system because I think while that is essential it's not enough. I mean there is this issue that we could not have the adequate information to be able to assess either the health or the healthcare provided in this country. And that was a problem that existed five years ago, and it's gotten worse instead of better over that time.
At the same time I don't want to say that we need to hold sort of our investments in HIT hostage until we figure out how to make the data flow for assessing things at a populations level or a national level, because that is going to be something that's going to be a real detriment to progress. But we have to think about as they're moving forward how we make incremental changes that are going to be helpful, how do we imaginatively find ways to take advantage of what they're doing regardless. But it's a very broad issue.
What we're focusing on today in potentially a letter this afternoon is the issue of resources, because you can't think about trying to resolve these problems unless you've got the resources to invest in contemplating the issue.
MR. REYNOLDS: Do you have a draft letter now?
DR. SCANLON: Hopefully by 1:00 o'clock we will have a draft letter. We have started on draft letters.
MR. REYNOLDS: What I would like you to do is as soon as you have it we would pass it out while people are – while we're going through the first session people could at least get a sense of what it is so that we could be very precise and expeditious at the 3:30 timeframe to try to at least have everybody take a good look at it.
We have Paul, a question, and Carol, you still have a question?
DR. TANG: I just had another refrigerator magnet. Yesterday was, ‘Do unto the data of others as you would have them do to your data.' And I think Garland said this, ‘Thou shalt go to the source that has the most vested interest in its accuracy.' I think you said to look at SSA to pick up some birth information, perhaps, I don't know.
MR. LAND: We provide information to SSA.
DR. TANG: Okay. I mean the other way to look at it perhaps is to pick up some birth and death information, because they have a vested interest in getting that information and getting it accurately, unlike unfortunately the health record.
MR. LAND: And we do that, too, we provide death information to SSA.
DR. TANG: Okay. So you know that there was some Stimulus money to use that for the VA disability as part of NHIN, so in other words there was just something there, and it seems like this kind of imaginative use of other accurate sources.
MR. REYNOLDS: Carol, did you have a question? Okay, with that we'll break for lunch. See everybody back here at 1:00 o'clock.
[Luncheon recess]
MR. REYNOLDS: If everybody could sit down please and we can get started. As we have said before, and I think Larry touched on it again yesterday, this idea of continually trying to educate the entire group on the types of things that are out there. I appreciate that Justine and Paul and others, along with Matt, that would be what would follow the word “along.”
And, Matt, I was trying to thank you and Justine interrupted me again, so thank you for what you did, putting this together for us.
We have another Matt, who is called Matthew Holt, who is going to be the person who is going to kick it off for us. Matthew, if you could tell us a little bit about yourself.
Then Dr. Spranca, Dr. Halamka, and Dr. Mandl are going to follow that opening discussion.
MR. QUINN: Dr. Mandl, because of a family emergency will not be here today.
MR. REYNOLDS: So, Matthew, please.
Emerging and Innovative Sources of Health Data
MR. HOLT: Thank you very much, I'm on the mike, I hope.
I was down for a half hour, but I might have to go a little bit longer because of the other cancellation. But those of you who have heard me before know that's not usually a problem. I know there's also more time for discussion, I would encourage you to stop me and yell, complain, interrupt, raise points at any time during this. A couple of you in the room have known me for quite a while, and I won't belabor my background for this. But I'm a native Californian, as you can tell by the accent. I've been living in California since 1989, and signed up to be an American, therefore I'm a real one for seven or eight years back now. Been living in the U.S. for about twenty years. I did some graduate work at Stanford in health services research. Went to work for the Institute of the Future in Menlo Park doing healthcare and healthcare IT. I've worked with various people in the room, Blackford and Matt, and he and I go back to the days at Medical Logic, maybe even before that, and Stanford as well, didn't even think about that. Since then I've wandered around and spent a bit of time in the startup doing personal health records where I encountered the other Matthew, Matt Quinn. As no good deed goes unpunished, because I gave him a job in 2000 he made me come here today.
Probably the thing I'm best known for now best, is when I returned from the post-startup lying on the beach in Asia phase that was very popular in 2002, I had been running a travel blog and I thought somebody should be writing one about healthcare, and I looked around and nobody was, so I started one. So I own and operate the Healthcare blog, which now seems to have become a venue mostly for people to fight about healthcare IT standards. It also covers various other issues around healthcare, the spectrum healthcare business market, policy, and what have you. And luckily because it's well-read now I don't have to write on it everyday. There was one period of time when I did, and that was hard work, I tell you.
As part of that I have always been following healthcare IT, much of my work at Institute for the Future and elsewhere was around the adoption of EMRs and the impact of the internet on healthcare. Around three or four years ago there was a substantive argument which was going to change in the way that information technology was being used in Silicon Valley, the emergence of what has now been termed “Web 2.0,” there's an argument about whether that's a real change or not. But there were enough people doing similar types of things in healthcare that they started coming to me and saying hey you should do something about this. But by accident I'm in the conference business, and I hold a conference twice a year for Health 2.0, which I didn't start the movement from the conference, so full disclosure, some of the people I'm going to talk to you about have sponsored the conference, or appeared there or what have you, I don't know if my conflict of interest statement will cover that, but I'll be happy to explain any of that later.
I'm going to spend about half the time, I'll spend about half an hour talking about Web 2.0 and Health 2.0, the general categories, and then I'm going to narrow it down and sort of talk about the very, very early stage issues of using what's going on online, primarily in as a venue for data collection and research, something that is your main mission, and I'll be happy to talk about that. I would warn you that is in incredibly early stages, there is really conjecture and a bit of activity you've talked about, there's no real data about that. It's something that we'll see how it develops.
With that let's kickoff to the PowerPoint. I will start with this one because I'm best known as a blogger. This was done, this chart is from an august organization, the BBC, that's just a poll of people's trust, and if you look down at the bottom the internet blog is kind of lost. I, for one, am going to be in Washington, D.C., right, and you people care about politics, and no one cares about politics as you care about negatives here, so negative ratings. So I thought let's look at negative ratings, both actually have lower negative ratings than the opinion of friends, family, and colleagues.
[Laughter]
MR. HOLT: But in case you ever have any troubles at work on this Committee and you perhaps value the opinions of colleagues and friends, perhaps you should point them towards the blog.
Let's dive into this Web 2.0 thing. It's probably old hat for many of you, but I do go around the country talking to people in healthcare IT a lot, and it is quite surprising how little the sort of general movement in the Silicon Valley IT world has moved, has been noticing the world of healthcare IT, which is always a sort of separate island in IT. It also plays the other way, because people from other IT world come into healthcare and assume they can change it easily and find it not quite as easy as all that.
Let's just very briefly run through this. You have probably seen this chart with some of these terms like folksonomy, social software, Web 2.0, the long tail, Open APIs and all that kind of stuff, AJAX. This is an ecosystem shot which looks at, this is a couple of years old, estimated market value, these numbers probably were a lot higher six months ago and now in terms of the market value of some of these, but things like Wikipedia, Facebook, YouTube, all these have had a significant impact in the way that people behave online.
And I also want to point out the speed at which this change has happened. I happen to know this because the guy who is four doors down from me in my apartment block is, I think he's the guy who was, because there was a huge renovation project and later I found out when I met him I found out he was one of the cofounders of YouTube, and I figured that's where the money came for the renovation project. It is such an interesting thing, do you know when YouTube was founded, the date, 2006. How quickly it's been that YouTube has become this phenomenon just out of nowhere.
So I think you will appreciate we're in an area where the speed has really happened very quickly. Blackford in his mind founded it in 2000, he wishes he had.
[Laughter]
MR. HOLT: So very briefly, the overview of this Web 2.0 change. If you go back to the mid-90s when we were first looking at the World Wide Web, and the internet went from being this sort of weird science project in the general collectiveness, it was really about publishing online and the ease of publishing. And the big key is around content management, web masters, regulating what was going on, and the dom letters were “e” and then “I” and you put a dash in between the names so it became e-Health, or e dash health or whatever, now eHealth 2.0 in some places in Europe.
Somewhere around 2004/2005, it really came into public consciousness since the last couple of years, this concept that is now called “Web 2.0.” And I don't want to go overboard whether it's the right nomenclature, and whether or not it's really a different thing, because a lot of the practices that were going on in Web 2.0 were there in the early days of the internet and even before in some of these online communities. But what you certainly have seen is an enormous uptake in the level of activity of all these things, like blogs, even amongst micro-bloggers. Is anybody twitting in the back there? The twitter community is – Blackford's doing it right now.
Obviously Wikis, I mean the power of Wikipedia, again, only created in 2002 I believe, if not yet it will be the dominant web address on the planet in terms of just utilization of Wikipedia, an entirely user-generated content system. The growth of these things has been really quite phenomenal.
What happens online is somewhat different. The other key difference is this is not a phenomenon which has been created by individuals publishing the same stuff they were doing offline before on paper. This is everybody getting to put their own stuff up, and it brings on whole new rules of guidance, and then a whole bunch of new ways that people put terminologies to these things. If you look most web companies they don't have a vowel in the name usually.
The main guy behind the concept of Web 2.0, putting names to this, is Tim O'Reilly. I'm not going to read through all of these, but he has sort of a pretty well known seven core competencies. I do want to pick up a couple of these, which I think are very important. The second one here is control of a unique hard to recreate data sources that get richer as more people use them. Certainly a lot of what's going on here is people creating more and more data sources, and as you add more and more users to the network and to those data sources the data in them becomes more complex, and in some ways it's harder to compete with in some businesses. In some ways that's also done before in collective intelligence.
The other one I think is particularly important to healthcare is the fifth one here, which is leveraging the long tail through customer's health service. I'm not going to define the long tail. I'm looking around, I'm hoping this august body has some concept of what we're talking about here. But that may not be the case, all right. [Laughing] The concept of the long tail here is that a physical organization like a bookstore has to actually decide what it's going to put on the shelves, and they have a number of ways they can, and they're limited by shelf space and by having to create enough copies of Harry Potter to pay the clerk and to pay the heating and the lighting bills and what have you, so there is some constraints on them. There is no constraint on Amazon creating a catalogue and then figuring out how to get you the rare book that you might want to buy, which only happens every – which only gets sold a couple of times a month.
The concept of the long tail is you get down into that long part of the tail for those books that only sell rarely in a virtual world, in fact the total number of those books sold is a fairly significant chunk of overall books sold, like 20 to 40 percent depending on which market you are in. In other words, there is a lot going on that doesn't make the sort of first big chunk of activity in any given market that is now enabled by essentially virtual online activity. That is the concept behind the long tail. I hope that makes some sense, because you can move that to healthcare very easily, particularly through diagnoses of symptoms, you know, there are only a certain number of symptoms, but we all know there's an incredibly number of relatively rare diseases which most doctors don't see on a regular basis. But if you add up the number of people with those disease conditions, eventually there are actually quite a lot of them and enough to sustain certainly online communities.
I think a lot of what is going on in terms of research around especially the rarer diseases, but also more common well-known disease states become revealed to actually a collection of much rarer diseases, I think there's a lot to play here. I would bear that concept in mind as to where we head.
I'm going to power very quickly through what the hell is Health 2.0, and you may still be wondering. I changed this chart because I started about two years ago with this chart, which is my sort of best guess at the constituent parts. Personalized search, makes the search much more personalized to the user content search, is one part. Presenting data is integrated in a useful way to consumers, and to all users including clinicians, because clinicians need data and information presented to them in a better way as well. The third one is particularly important for what we're going to talk about later, which is communities capturing the accumulated knowledge of patients and caregivers and also clinicians. And then finally, creating more intelligent tools to deliver that content.
I don't think we need to talk about it too much today, but there's a subtext here about the locus of control of healthcare, changing from the system the establishment providers to patients, and obviously that's a long topic which is not in the purview for today, but it is certainly a big part behind this movement.
I'm a simple consultant, so here's some simple charts, give you the rough space about how valuable both in terms of use and in terms of financial value, searches versus social networks versus tools are, searches carry the dominant player. A small company in Mountain View, California, which figured out how to make a few bucks out a of search, and the estimates of health search are roughly they're making a billion dollars in advertising associated with health terms and such. Social networks and tools as well are growing. And what you're seeing in that little intersection between these three of them is where the really interesting stuff is starting to happen.
There are two other points worth making, are in healthcare we have a lot of transactions, an awful lot of transactions, and there's a lot of content, and we have done a really lousy job of putting the two together. One of the things going on here is that using these types of tools we're hoping to bridge that gap. From a policy level foundation we've made a start putting these two things together, but I think you'll admit that's a long way to go for everybody.
Then just a very quick run-through of some examples. This is a Google search for diabetes. This is a search from a specialized company called “Healia” which is based in Seattle now owned by the publishing company called “Meredith.” You can see on the left-hand side of the screen they have figured out ways to start filtering the search terms so the results come back to you in a way that may be applicable for who you are as a person. Very early stages of personalization search is going on here. A number of other companies are taking a similar approach, Healthline, Praxion, a number of other companies are doing this kind of thing.
I think you all see Google, and Microsoft setting up a pretty decent job as well here, they purchased a company called MedHealth, but they purchased the first company which does this kind of personalization getting search terms to be more relevant. So some personalization searches going on.
Communities online are becoming more intelligent. There have been email list serves for many years. This is a chart of an email list serve from the ovarian cancer list serve. ACOR, which is the online cancer resource, I think it has about 160 email list serves with people just communicating using email for cancer information, very, very powerful patient community. But you are seeing significant changes in how those tools for communities are changing.
Here's one, I'll go back to the this site again, it's a screen shot from patients like me, which in some ways is kind of the shining star from Health 2.0 sites. They collect very detailed information on their users. It's a community for people with very severe chronic diseases, ALS, Parkinson's disease, and some others like that. Just to give you an indication, it's a site in which you are exchanging all kinds of information, including recording essentially your personal health record, although it's not called that, a lot of their day to day activities which would not be captured in other typical EMRs.
Thirdly, in terms of content, this is a sort of in the name of replacing something old with something new, this is some information sheet from the FDA that is on the FDA website about a particular drug. But what would be really helpful is if you could actually create a drug information system that really reflected what you the patient were taking, and what symptoms you have, and see if there might be some drug interactions that really matter to you, maybe in for the long tail, maybe buried deep down in the text of a modem or a First Databank monograph. In fact, it's a company that I'm an advisor, who I begged them to be an advisor, called Enhanced Medical Decisions, has some early prototype of what called DoubleCheckMD. They have both a drug-based and a treatment-based program using natural language recognition to come back and bring simpler terms information that was buried in e-clinical monographs, so presenting content in a much more interesting way.
I think this type of activity, these three things I've just shown you, you're going to see a lot more of that in the coming years as more and more people throw computing power at content and information.
Very briefly, this is just some very brief outline data from the study that Edelman, the PR agency did. What it is telling you is about 22 percent of the population, according to their metrics, is becoming what they call “health influentials,” which is sort of marketing speak for a group of consumers who are not only looking at healthcare information online, but are also starting to disseminate that kind of information to others. And I think you are seeing the sort of evolution of a very smart group of consumers who in some ways are running ahead of their providers.
By the way, they are actually like health expert blogs, I'm not sure the health expert blog actually does get fairly good credibility if it's coupled with sort of getting good expertise behind it.
Just to try and give you a sense of where I think we're heading here. I think the issue for these online communities is to try to use these two technologies. One is to comb, I don't use that thing on the left much, but use the one on the right, is to comb through all that content online and trying to essentially get it to rise to the top, get the really important stuff to bobble to the top, like on the top of a pint of Guinness, where the bubbles come up. And I think that's through the simpler way that we've seen these changes.
I think in terms of tools, when something becomes like not only a tool rather than just a content source or a search database result, it's when it comes back to the consumer or the user and it's much more personalized, it gives them some analysis, it actually supports the decision they make and actually helps them enable a transaction. I think several of the sort of implementations that we're seeing connecting the EMRs and PHRs and some of these other tools with content around healthcare, Palo Alto Medical Foundation is one of them, of course, are starting to resemble real tools for these consumers. I think we're going to see a lot more of that coming up.
I have changed just in the last few months my slides slightly. This is still the same search, social networks and tools bubble chart. You saw the same transaction data and content data out there, but there is clearly on behalf of some provider groups in some health plans, I say the government's a little bit behind this, but is moving in this direction, an attempt to try and sort of put these things together and to use transaction data in particular to support search, search networks, and user tools by consumers. One example of this would be Aetna is using its data from its claims database using the active health management system to actually push the – consumers data about their interactions day to day, and actually changing the way their webpage appears to consumers based on the type of information about their conditions and the drugs they're taking or other things like that.
I think we're starting to see the early stages of this whole thing sort of mushing together, and the data that is out there is starting slowly to come into support the information content seeking, which is really then a very different place to now. But again, this is very early days.
I would say we're seeing some slight changes to Health 2.0, even though it's early days. We are still seeing personalized search, but I think that search is carrying a lot more about the user experience than it was. There is a lot of experimentation going on how you present information content back to people in a very useful way for them. This is sort of the UI, the user experience part of that is user interface and user experience, I think it's becoming increasingly important, and I think that's something that's going on by the way on the EMR side as well. There are some interesting new EMR companies who are looking at things like Facebook and figuring out how do they do it right and how can we use that kind of tools and technology in our development. I just saw one of those this morning which hasn't been publicly released yet, but I think it will be very interesting.
We are now really wrestling with the issue of okay we have all this data going on in these patient communities, a lot of activity. Somewhere around about 30 percent of the people who are going online for healthcare, which is pretty much everybody who goes online at some point or other, about 30 percent of those people have been looking into user generated content, and about 10 percent have actually been creating user generated content in healthcare contributed communities. So you got a lot of information, and we'll talk about that shortly. But the question is how do you parse through that and find the relevant interesting stuff and present it back, and that is a really serious challenge.
I think increasingly some of these intelligent tools I talked about which were basically getting people better more personalized content are starting to be used for transactions, and used for simple transactions like setting appointments with clinicians and what have you. At the moment I think that's increasingly going to be a part of what they're doing. You are seeing this a bit more on the financial side than on the clinical side. There are now some pretty interesting new tools comparing health plans and trying to figure out which health plan you should choose depending on which diseases you have. This is something you might know, my old boss used to have a joke about how do you figure out which plan to choose, it all started with you have to choose which diseases you were going to have, it's actually kind of coming true, you know.
Then, as I said, we're also now starting to see these filers of data start the walls coming down, start seeing them being attached to content, and there is some really interesting stuff going on in some of the early work. Some of the providers who are now working with Google and Microsoft in their health force and Google health initiatives, are really starting to integrate some really interesting data content, which is really much more than just information about a disease, but actually what should you do given the condition you currently have.
I think increasingly you're finding much more activist patients, and that's going to be an ongoing theme. Actually I was at the meeting of the IOM yesterday, which was about integrative care, which is interesting because everyone on the panel was thinking about coordinating chronic care integration, then one of them was thinking about acupuncture and natural healing being integrated with care. But we're talking about taking data from multiple silos, integrating it and putting it into a more useful format, and patients increasingly taking the lead in that.
Just to finish up the Health 2.0 section. Here is kind of a continuum of care, continuum of Health 2.0. We are really on the left-hand side of this continuum, which is using these Web 2.0 technologies for patients and physicians to communicate with each other, but not really to connect to the wide healthcare system. We're just getting into that second box here, which is tools communities created as part of this sort of Health 2.0 movement, starting to connect to the healthcare system, which is simple things like appointments and managing simple clinical events, getting lab tests, that's just starting to happen. But with things like Kaiser's Health Connect and some of the other tools around that's now starting to happen.
Where we haven't really seen much impact yet is the last two boxes, and these are far more theoretical at this stage. But a couple things, if we're going to see with clarity into more data and understand more information, you can expect at some point one would both hope and postulate to see changes in the way that we pay for things, changes in the way we actually change our care processes, brought about by more information. And I think if you talked to the folks, I'm sure you've had them up before you in this group, from Kaiser Permanente you have Health Connect where they now have a very large database and they're starting to run all kinds of charts, and I'm sure you've done this at Partners and elsewhere.
We know that how we've been doing things isn't the right way, and part of the reason is we haven't had really great data on how things get done, and we haven't been able to throw our computing prowess at this database. Once we do all that, it fully stands to reason we can start things in a different way, because every other business in America does it for good or for bad, as we've been finding out.
Then the last part of this, and there are already some optimists running with this, is the concept of using all this data to change discovery and therapy. I think a lot of what we are talking about here is connected to that. I don't have the answer, but there are already people talking about using these tools to do open source research, both clinical research on the bench in the lab, but also amongst patients, and putting a focus a bit more than that later. To me these are the continuum. Clearly if you look it on a sort of likelihood versus ultimate impact, if you could change how this information changes discovery, that would have the big ultimate impact. It's less likely at the moment, we already have these, that's already happening, right now it's growing very fast, that's very likely. But that is going to have less of an ultimate impact than actually going all the way to having data change based on or discovery based on changing the data.
So with that I'm going to start talking about sort of what you brought me here to do with the research side. Are there any questions, comments, appalled opinions about that? I'll take a breath for a second.
MS. MCCALL: Are you halfway through?
MR. HOLT: I'm probably halfway on slides as far as this.
MS. MCCALL: I'll wait until you just wrap it up.
MR. HOLT: Okay, good. I want to talk a bit about data sources, and as I said at the start, this is very early days, so I don't have a huge amount to say, and I certainly don't have the answer. But what is going on is that online these patient people are talking about what's happening and they are now being given tools to rate what's happening. So this is a patient daily string, and if you look on the right-hand side here this is a page in which patients are rating treatments for particular conditions. If you are halfway down the page you might find it interesting that crying works 82 percent of the time, whereas Lexapro only works 55 percent of the time. You might have heard on the news this morning about Lexapro and crying.
So the quest is I have met with clinicians who had strong objections to allowing patients to taking this information as useful from patients. We are certainly seeing that in some ways the crowd is voting with what they think works for it.
This is also happening among physicians. Sermo has now got over 100,000 physician members. Before we knew each other online, here they have a case I just pulled out from last month which is a clinician conference case online where clinicians get to vote about what they thought the result was, and you can see the results are the votes on the right. There are not a huge number of votes in this particular case, only 88 votes, but you get some sense of the ability of power to get the clinicians through a clinical conference around a particular case. And some of this has been used already by the FDA and some other agencies, sort of used as an early warning signal for drug interactions and ADEs and that kind of stuff.
I wanted to say a little about people who deliberately try to use these communities for research. The key one is Patients Like me, which has actually an entire segment that is devoted to research, it was started by two brothers trying to save their third brother who had ALS, and it was started as a research company that was then changed into an online community. They actually had an entire research team, and they have various public presentations which you could easily get hold of.
In particular, bubbling up through their communities is this sense that the use of Lithium might have a positive impact on ALS. So they actually ended up on this trial, and they had several hundred patients in a self-generated clinical trial taking Lithium to see if it worked or not, and you had a whole bunch of information available. This is available on the public website, over 122 of these patients have their information on the public website, freely available, you don't have to log in to go see it. And they were looking at to see what was the impact of Lithium with these patients in everyday use on their condition. 358 patients were taking Lithium here, and this is sort of further down, here is one of them and you can actually see who this individual was. A bunch of information here about the impact of going on this essentially self-generated clinical trial.
You can even see the score, results of individual patients, and if you can figure that out, this is functional, and I'm not saying you should be able to understand this just by looking at the chart. But you can click on every one of these lines, it's a bit tricky, you get the functional status of those individuals from the time they went on Lithium. As it happened interestingly enough, the conclusion of this trial is that it didn't have a positive impact. But nonetheless, you were able to generate this trial out of nowhere very quickly with this number of ALS patients, that probably would be almost unthinkable to do this in any other community or scenario.
There has been one interesting new company that has come together, this is really early days for this company, only have a couple of thousand people using this site called Cure Together. It's a geneticist who started this absolutely on a shoestring. Here is a page where you can start and go to the site, and if you have a condition, in this case it is depression, you can start recording your symptoms on a very detailed level give information and put your information on this site. The exact goal of Cure Together is to do develop better information about symptoms and treatments and cures by basically collecting information. It is essentially a volunteer database.
They have also got some way they can show some results. These are some results about impact of treatments on migraine, whether you tried it, whether it was effective. They are collecting huge amounts of data, very specific data about individuals in a way that encompasses their whole life rather than just the bit that the healthcare system sees. And Don Burbick(?) yesterday at IOM was talking about, he was revealing, he said too much about himself, he was talking about his surgery, a surgery which is quite well known probably in this room, but actually lack of a knee surgery in that he had a steroid injection instead. But that he was talking about his ability to go cross-country skiing and to go to this place in New Hampshire where he can see – and he eventually claimed no clinician has ever heard this story and knows about this issue, but we're talking here about neck massages as a treatment for migraine. I suspect that there are very few medical records which record neck massage as one of the treatments for migraine.
So the question is what works and what doesn't. And this group is even already, I won't even try to pronounce this condition, but has already put together over 100, maybe 200 women sharing their experiences and treatments, and created this self-published book about all the, I won't try to pronounce it because I'll get it wrong, but about a serious rare medical condition.
Then the last thing I'll say about this is my dog is the one underneath on the bottom right being attacked by the Boston Terrier, this issue around cats and dogs. When I mentioned that the Healthcare blog is now being used between people to argue about health standards, there is kind of an argument, and I think we'll come to this a bit later, about should we be putting electronic medical records in the doctor's office or should we be looking at trying to capture patient outcomes, and sort of what should be rewarding. And even if that argument is kind of finished with the Stimulus package rewards, at some point we have to bring these two communities together. We have to figure out how we make, as Bill Murray said in Ghostbusters, cats and dogs living together in perfect harmony.
That may not happen, but if a cat is somebody who likes a place, and if dogs like people, which is a common truism, if we're going to follow people around and try and record their information, we've got to try to somehow integrate that back with what's happening in the healthcare facilities where the care is taking place. I don't have an answer for that, other than we need to be thinking about both ends of the spectrum as to how we generate data.
Then I just have some recommendations how to spend the $1.1 billion you guys will control now, right? The numbers may not be quite right, you may not actually have that. But I think with this money it's cheap to go and figure out some partnerships. Literally, Cure Together is a woman, a man, and a dog in a garage, with not much, it's unfunded, really with very little help. You don't need much to produce, it's very cheap to put these sites together, you don't need much to help them keep going. And a little bit of research funding I think would be very, very valuable. And I don't think it should be in the business of making more dot com millionaires, but I do think there are some little sites here which could use a bit of help. And if they are having to rely on advertising for the drug companies or what have you, most of these communities don't want that. They are interested in doing research and treatment and self-help. And I think that's an area where a few research grants funded judiciously could go a long way.
I'm now stuck on this whole concept of integrated, integration, whatever it means as of yesterday. But we do have to connect the big databases which are based on EMRs, like what's coming out of Kaiser and the VA and elsewhere, with these other sources, we have to figure out a way to do integration between them. I'm nowhere near clear enough to understand how that gets done, but I do know that many other businesses have put together disparate datasets from small algorithms, and a lot of computing power, and have got really interesting answers out of this. It seems like very valuable industries like direct mail, really as a society has managed to figure this out, so I think we could do some of that in healthcare.
And the last piece, which is back to this cats and dogs issue, is if we are going to spend all this money on especially CMS who's going to direct this money and reward providers who are doing the right thing, let's think about the whole panoply of patients and consumers out there and outcomes as a whole, and everywhere they are and try to get information and reward reaching out to them everywhere they are, and try and get reporting back from everywhere. But that would be really useful information, because as has been stressed many times and related this to you, healthcare is not what happens in one hospital admission or in a seven minute office visit, healthcare or health is what happens to people in their everyday life. We know that what impacts, you know, if we could figure out what impacts their everyday life and the health status, that would actually significantly change the numbers of those office visits, and also the admissions we have to pay for. I think that's the greater goal we're all going towards.
With that I've overstayed my welcome, and I'll now shut-up and take any questions.
MR. REYNOLDS: What is the desire of the group to – how soon is John going to be joining us, how long?
MR. QUINN: He is scheduled for 2:30, but he'll call here.
MR. REYNOLDS: For 2:30? No, that's no problem. So here is what we have, Dr. Mandl is not available, Dr. Spranca is not available, so Matthew is available.
[Laughter]
MR. REYNOLDS: Let's just go around the corner here.
DR. HORNBROOK: Matthew, have you seen any examples of what we can see in the future? Let's say some clinical scenarios of a parent with a kid with apparent ear infection, and what is your vision of how they would treat their child and stay out of the healthcare system? Then a vision of let's say somebody with something much more acute, like severe dehydration from vomiting and diarrhea, and they're starting to hallucinate and not sure what's happening to them. Do you view the web as being roles in these two kinds of cases?
MR. HOLT: In both of them. I think they are two different – so I think in general what we need to be doing is replacing people with computing. Not on a whole replace human beings with androids.
MR. REYNOLDS: You are being taped, don't let it bother you.
MR. HOLT: That's all right. I don't work for the federal government, and I have no federal grant, I don't think.
MR. REYNOLDS: But the androids are listening.
[Laughter]
MR. HOLT: If it's being taped somebody somewhere is listening. What I mean by that is there is surely no disagreement in this room that we don't have enough of the right people in the healthcare workforce, and we can't easily afford more people in the healthcare workforce. And we need to figure out a way to drive decision making down to the cheapest and also most effective level at the same time. This is Don Kemper from Healthwise I'm going to meet with tonight has been banging on about this for many, many years. And I think my solution to the sort of simple case would be a combination of smarter systems, so something a bit like getting better personalized search to sort of essentially deliver to the patient the same kind of guidelines that if they called now and got a hold of the person like in Health Solutions, as Blue Cross or wherever, and actually delivered and was able to get that information, figure out what should I be doing, should I take my kid to the emergency room, is it serious or is this something that can wait until the morning, get that information and even share that with the group, or being able to chat with a physician online.
These sorts of things are starting to appear already. There is this company, America Well, you've probably run into already, it's been making a big splash, we've got Blue Cross in Hawaii, we can go online and there are other things you can do, which put that level of interaction into a – which isn't urgent, but is near term, but into a safe format that is useful for a – but I think deliberate content first and then professional clinical care second, and start it low end in terms of cost clinical care before you get to the emergency room.
For the second group, I'm not a clinician, my dad is a – the stuff I do if my dad ever found out what I was doing, he's an old world British obstetrician gynecologist, and if he found out I was advocating patients having rights I think I would be cut out of the will. I hope he's not listening. But he used to come home and discuss his clinical work all the time, and I never heard him talk about the patient's choice the whole time. But that might be a reflection on 1960s Britain.
I think that what we need for those people, especially people who are elderly, frail, sick, they're not easy access – now, by the way, before I get into this, a lot of the people or patients are incredibly frail, incredibly ill, and have managed to figure out – and someone obviously tapping away with neck movements. If any of you get a chance the movie about Stephen Heywood, he's the one of the Heywood brothers that unfortunately died with ALS, really shows you incredible, you know, actually moving his neck and able to take part in his community and use the computer, it's phenomenal. That's a movie called So Much So Fast. I blogged it? Twitter user over here.
But to go back to the issue, for those people especially I think you're going to see, whether it comes from health plans or it comes from the federal government, whether it comes from private sector consumer group, and whether it's the role of a medical home, I don't know where it comes from, but someone to be the navigator of the system using these kinds of tools I think is essential.
And there was a case presented at another conference by the CEO of DoubleCheck – where literally, now, it's very early days again for this, and she's a clinician, she's a physician, and she used this tool, but she'd been called by her friend in Los Angeles who said my mom is going to the emergency room, she's 85 years old, she has multiple co-morbidities, the doctors are going to take her and they want to do a stent. And essentially what happened was a typical medical error that happens in very hospital in every city in every part of the country, and probably every part of the world every day, which is they missed a couple – the clinicians didn't have good information, when they did have the information they missed a couple of sort of basic, well not basic, but it was obviously too hard for them to get into their treatment program, missed some of that basic information, they probably didn't have really good solid EMR in that emergency room. And I forget the exact details, they had taken her off one drug and put her on another, there was a drug interaction, and if you go through the treatment guidelines there are several things that should have been done that weren't done.
By acting as the patient's advocate, the CEO of this company was able in fact to end up getting that elderly patient home, she didn't need to have a stent, and in fact it wasn't anything to do with heart blockage, it was some congestive heart failure caused as a byproduct of the treatment she was on, and ended up not having her receive the stent, which not only saves Medicare a few tens of thousands of dollars, but more importantly probably even saved her life, because she might not have been able to survive that experience.
To me somebody somewhere in the system has to – we know healthcare is too complex for any one clinician or any groups of clinicians to easily manage, and especially with these very sick patients with multiple co-morbidities. I think these kinds of tools are going to be used. And whether it comes more from a consumer-based system or an EMR clinical-based system, it's going to integrate together. So I would - they're becoming more widely used in most of healthcare, it's kind of as Charles Schwab puts a relatively well-paid intelligent human being in front of a lot of computing power to talk about the stock market, to adjust portfolios, but a lot of that sort of portfolio adjustment and what have you goes on behind the scenes is done by computing power, not done by the whim of the individual on the keyboard.
That is kind of where I see that going. I'm not sure it has much to do with data collection, other than obviously the more we know about what's going on elsewhere we're going to know more about that in terms of making those systems smarter.
MR. REYNOLDS: Justine, did I see yours? Paul, I saw Paul's. Leslie, I'm coming around.
DR. TANG: Thanks, Matthew. I wonder if I can propose sort of an alternative model, or at least some other framework and get your comments on it.
So rather than dogs and cats, I'd like to look at your continuum, the arrows, and I didn't see an exact role for instead of what I would call dogs and cats I would call pilot and copilot, without assigning who has which seat.
The Health 2.0 or the Web 2.0 is sort of like a relationship anonymous with anonymous. And even I think it's called Medwell, the one in Hawaii, is sort of anonymous MD with anonymous patient.
MR. HOLT: Actually their goal is to be a bit more like your organization, a bit more of known patient with sort of licensed known approved doctor within a health plan network format, it just may not be your doctor.
DR. TANG: Where I want to go is where does this fit? And do you see the synergy of establishing a more continuous relationship between two known parties? With in the case of this person you talked about in wherever he had his chest pain between your PCP and standard terminology, and no matter where you are and in no matter time.
Where we're going, for example, you talked about let's look at what happens in the organization, the hospital or the clinic, where healthcare is delivered. Well, ironically what we did is we went to the home where life is lived for a diabetic, and tried to figure out what is it that we can do either to instrument this what's going on or provide the tools where life is lived that would help this individual get more control of it and be able to manage their own condition.
The other thing that is described is oh by the way we can get a carbon copy so that we can chime in where appropriate. But really this is all about the individual and bringing the resources to the individual, that it is sort of leveraging the relationship into underlying data of that relationship. How do you fit that into the picture, and how do you leverage that?
MR. HOLT: Everything you said I couldn't agree more with, and I think it's wonderful. And the problem here is not what you're doing, the problem here is that - is a wonderful organization which is not reproduced across the country. We just know it's the case that most Americans do not receive the healthcare in an organized system of care with a strong medical group like that, or even at a Partners, which Matthew will tell us is equally not quite as – across its organization.
But most of them, I mean I hate to use personal anecdotes, but if it's good enough for Don Burlick(?), why not, I am a member of an august organization called (?) Blue Cross, because it used to be, it changed its name for whatever reason, but some of you who know Don is very smart, intelligent medical director, they're now paying people on the health, they're actually paying bonuses on their health or what have you. I'm also a member of their HMO, not because my wife's company's - yet.
I'm also a member of a kind of quasi-concierge medical clinic in San Francisco, where I went in last year and finally my wife bullied me and I finally went in and had, I'm a typical 45 year old male who is never going to die and never sees a doctor, she made me go and have the test and yes my cholesterol should be lower, and I said I was going to go and get my nutrition looked at, and all that kind of stuff. And really what I heard from either Blue Cross or from my concierge medicine clinic, I was supposed to go back in October and now it's February, what have I heard about this been bullying me, incenting me, getting me into place, I've heard nothing, despite the fact that I'm in an HMO which is supposed to care and the concierge with champagne, $200 a year, or whatever the number is. And I always think I'm very, very typical. So I am probably one of those people who are an accident waiting to happen in ten years time, that the system can't figure out, or fifteen years time or twenty years time, and it's kind of down to me. And even though I do this stuff every day and I understand I should be eating a Mediterranean diet, and on and on and on, to me most people are being left out of these systems.
I'm completely with you, I would love to see this integrated, and the Health 2.0 Web 2.0 community and services being integrated with everyday services in American healthcare, but if we're going to rely on American healthcare to change I think we'll be waiting a long time.
DR. TANG: So the question is just can you accommodate that in your mind so that we can start latching on? Because I think there will -
MR. HOLT: Oh, no, no, no. Don't get me wrong. I think Kaiser Permanente, VA, all those are squarely in the second group here. And in fact, I don't know about your organization but I know Kaiser is looking more and more at going to the left and trying to figure out how to use communities online, and should we be the venue for that one? Sure. Similar using other things in this world as well. So, yes, of course. And I think most people within the health people know well from the people who had an event like the Heywood brothers and wanted to start their own system, to the people who are the sort of Silicon Valley entrepreneurs who are simply going to make a quick buck, all believe that the healthcare system that they are not going to replace the healthcare system, they're going to work with the healthcare system. But having said that, I think a lot of this stuff is running very fast head of the capacity that we're seeing each and every day in healthcare.
MR. REYNOLDS: We have Leslie and then Blackford.
DR. FRANCIS: I'm the co-chair of the Privacy and Security Subcommittee, and I want to preface this by saying that first of all thank you. And as I understood the goal of this it was to provide us with some of the kind of enlightenment that will be helpful to us as we think about what are the kinds of issues we ought to be thinking about in confronting, and indeed in making maximal use of some of these wonderful new options that are out there.
With that in mind, obviously there are a number of kinds of privacy issues that all of these sorts of interactive uses of the web raise, including one just plain where the information goes and who has access to it, but also how much people understand about what might happen if they log in with any kind of personal information and so on. So there are understanding problems, and there are questions about where it might go.
I know that with respect to MySpace or even Facebook there is some informal understandings that have grown up, so people who are looking for jobs don't put stuff up on MySpace that they don't want prospective employers to see anymore, I mean if they're smart, that's kind of become known. Facebook just within the last two weeks had a really interesting user corrective change in policy about keeping information. And I can think of other things that have evolved, when you pay with credit card now over the web only the last four digits get recorded, you think, or questions about even Paypal emerging as an institution.
I guess I have a two-pronged question. What are the kinds of privacy issues that you see as the ones that either should or could be addressed as we move forward that would be helpful in encouraging more people to make use of this? And second, are there any emerging either informal norms or formal norms or formal mechanisms that you're aware of that look like some of the examples I gave you?
MR. HOLT: Let me preface this by saying that while I have strong opinions about the subject, and the strong opinions are weakly held because I'm not an expert and within the privacy detail I don't know the legislation about this too deeply. But first off, there seems to be a major concern when you hear about people concerned with privacy it's not the fact that somebody may steal their health information and know about it, but that it may be used against them, kind of like in yours.
And I think a couple of things. One is that yes there is user pushback by the Facebook example recently where the user said hey no you're not going to change the terms of service on us for your own gain. And that has happened in several areas, and feedback is very fast in the web. There's a case actually where Microsoft initially overpaid some severance payments and then asked for them back, and then the PR was not worth the hassle, we should have instead done the right thing and just let them keep the money.
There is also this sort of bending the other way, which is I actually just hired some people for my little startup, and in a recession I should get a medal I think, but there were a couple in the application process who kind of made big mistakes with Facebook. And actually one of them I missed an interview I was going to have with them on the phone and they basically complained on their Facebook page, and then invited me because they were trying to connect with me on Facebook, but that meant that I could see their profile and their ranting about me missing the interview. They didn't get the job. That's a little unusual. But everybody who did apply, because they are all 27 – I went and looked at them all, so they were drinking in a bar. Look, most people go out when they're 28 and drink in a bar. I'm past the age of saying oh you should have nothing on that, we have to have complete professional stuff online. But obviously people's work life and social life online is – and you've got to accept that, and you've got to have some more norms from that.
Now, to healthcare, there's a couple of ways I think you can answer that. One is the Patients Like Me approach, which is to say you stick it out there, you put everything out there, and we want you to be as open as possible and that's part of the reason to join this community, but you can have one layer back, you make sure that only other people in the community can see this. And if you looked at this 325 people, I think only 122 were actually opened on that screen.
To return to the big problem here, it's not again what are the privacy concerns of people about their information, if you have ALS people already know you have ALS. There are obviously other conditions that are more sensitive and stuff can be worked through that.
DR. FRANCIS: How about ones you can't see, like MS?
MR. HOLT: Of course, a problem, I understand that. For me this is not a healthcare issue or privacy issue, this is a regulatory issue around who can buy insurance, and who can be discriminated against for that reason. I think the way to fix that is we know a much bigger fix, which is outside the vestiges of this committee and probably outside the vestiges of this building, but hopefully will be fixed sometime within this administration.
Because I think that to me is the main fear, the people who are terrified that their insurance company might find out, or their employer might find out, and find some reason to get rid of them, because they won't be able to buy health insurance. And somebody in this room advised the health insurance in the individual market or – very conscious of that.
DR. FRANCIS: Could I just follow up very quickly to ask if there are any other mechanisms that you're aware of other than the Patients Like Me, that if you joined a community that are controller-based that we might want to know about?
MR. HOLT: There are absolutely. There are at least three or four companies who are in various stages of developing their online privacy management systems, whereby they will reveal a certain amount about you to people or organizations that you want to for whatever reason. There is one called Private Access, again very small company startup, which is intending to allow people to sort of release information about themselves for potential clinical trials. Essentially think of it as being a vault where you can release little sequential dribbles of information, say you can put out there that yes you might be interested in this trial, but go through these gradations until the actual information, until the researcher finds out your name and email essentially, where you can control exactly what people can see.
There's another one called You Take Control, it's similar. There's a company called Vdentity, which has got a sort of phone-based anti-phishing device essentially where for release of patient information there's like an access-based phone-based system so that you could, you know, if an organization wants to release information to another organization, like a doctor wanted to release information to a clinic or what have you, they would get a call at home and it would be a sort of identity that was already set up and put them through that process.
So there are a number of companies like that who are trying to figure this out online. I think it part of a wider societal issue about how much information we're going to release. And let's face it, there are 20 percent of Americans who don't think that anybody should know anything about them, and don't believe in the big database, and we've heard enough from those people recently I think.
MR. REYNOLDS: Blackford and then Don.
DR. MIDDLETON: Matthew, thanks again for coming, and great to hear you speak, and I appreciate the way in which you have been not only chronicling and observing the healthcare industry, but also pushing it I think in interesting ways.
My question for you is to ask you to put on your philosopher's cap for a second. I guess there's two, I have several questions if I may, but the first one is really about do we know that community actually has a positive impact on health? Certainly there is recent evidence to suggest that having fat friends makes it more likely that you yourself are fat. Certainly drinking, smoking, other untoward behaviors and a wide variety of things, may go cluster in ways that are untoward for health, as opposed to the other kinds of benefits we see with communities. So I think that question has to be put on the table, and it's really not for a response unless you care to.
MR. HOLT: Well, actually one quick response, is there's an organization called Center for Connected Health you may have heard of. They're suggesting a study about roles of people, the value of people – online community. I think we can argue, there's pretty clear evidence from David Sabell(?) and others that on offline real life communities the patients improve the patient's experience and their outcomes. I think slowly emerging we're seeing some of this, more of this, we certainly have the anecdotes, yes, the proof is coming, they're slow.
DR. MIDDLETON: That's where the next question follows. I think we struggle a little bit with the theory of evidence around these data coming from social networks and, if you will, the epistemology of their truth or veracity and what not. Several questions come to mind. When you think about the evidence, where do we get the evidence for hyper-segmented care? That is my therapy, this came up over lunch, may be unique to Blackford Middleton, God forbid, but it may be that my gene sequence, my gene type, my behavior patterns, or what not, suggests a particular type of therapy which no one else may ever actually need to have. Thus there's an evidence problem of how do we actually determine what's good and bad from a man of one perspective.
On the flip side of the same problem is how do we determine what's acceptable of population evidence from social networks, when there's no experimental design or control of the experiment, if you will, rather these are association observations, association studies, suggesting that Lithium is actually having some impact on ALS, and ask actually a change in language, it was not a trial, it's an observation, it's an association.
Third, there may be a significant regression to the mean kind of problem. That is that if we take a population and begin to look at it as only a population, we'll fail to identify the hyper-segmented individual characteristics, and thus treatment and diagnosis may regress toward a mean.
Then last, two more actually, I'll go back to them. If it is the patient who is the source of these data, and I'm good with that, however we need to think about data validity and we talked about this earlier today, accuracy, reliability, precision, and non-repudiation for those data which you might share with me or I might share with you if you were my caregiver, so I can't game the system.
Then lastly, how do we actually measure the values? The people who are going to be paying for care which might include social networks, and the impact if you will that they have on my outcomes, how do we actually measure the value?
MR. HOLT: Wow, okay, let's start at the end and then remind me of the first ones.
The value question to me is really tricky, but it's almost – most of my answers will be in this flavor. It is kind of we're not really bothering about this other stuff so much at the moment, so we should be putting it in a universe in which we're looking at the value of everything. Today – you know, you get more evidence. But what we spend a lot of money on in Medicare varies dramatically with no real reason for specifically increased value, in fact may be decreased value from that extra spending.
Having said that, I think there are two things. One is that a patient choice and patient experience in the absence of are there outcome measures and whether people like it or not, I mean I think that's got something – people's experience of their healthcare is somewhat valuable in and of itself if that improves. So people who go to these online communities and say it helps them and they have a better time dealing with their condition, I think that's clear, there's evidence of that, and how you count it, that's clearly one piece.
Then the other question, and it comes down to this, is are we replacing, quote, unquote, “unnecessary or bad care,” not even bad care, are we replacing care that could be – settings to these virtual settings, and is it possible that you can measure the people who have some level of interaction with others in communities or with the system online, are using resources and doing as well if not better.
The only evidence I think so far is that one Kaiser study looking at the number of office visits using, and you have probably been involved in similar studies, using a number of office visits for those people using their online email service, went down, satisfaction went up, and then overall care was as good if not better. There has yet to be data showing similar evidence for use of social networks.
But my guess is you could observationally go back and find similar evidence using patient daily strength. We had one person come to a – meeting who was on a diet actually and lost several hundred pounds, and really turned her life around through a support group. And point one, could she have done without daily strength, who knows, she says not. But I mean again, not reputable data, which gets I think to your third or fourth question, which is how do you, if I got the question right, it's how do you know not regression to the mean, how do you know these people wouldn't have done it anyway, how do you know that you just didn't see the people who were self-selecting to this. That's a huge boring big research question, which that's the reason I'm not still a healthcare researcher, with that kind of a question.
I don't quite know how you do it, I don't have the answer.
MS. MCCALL: I actually do have a response to that. I think it is one of those big hairy questions.
But I think what we have to do is prepare for it. These things are coming, they will exist, people will join them, and they will work or they will not, and they will work to a certain degree or they won't. But the most important thing to do is to understand that as that information and data and affect, as the affect is out there, it will be in the data that is traditionally captured and analyzed. And by God, if I were to do one thing I might want a doctor to start learning to understand and ask the question that says are you part of any health communities. Just that one thing, yes or no, can you tell me which one, my goodness.
MR. HOLT: The one other thing I would add to that is I cannot believe this problem is intrinsic just to health, with only healthcare has this. If you look at people who have thrown millions of dollars in computing processing power at these big data problems in the financial industry, they got what's the impact of chat rooms on the exchange in the stock trade. There has to be some kind of analysis problem that people have looked at. But I don't have the answer to that.
DR. MIDDLETON: Just one quick follow-up if I may. I agree with you that sort of the BI world, the business intelligence world is taking mass computer power and mass data and market analyses and financial analyses will tell you exactly what is the right thing for you to do in your portfolio, blah, blah.
The problem is from the theory of evidence point of view, none of that is based upon randomized control data as an input, if you will, to the modeling. All the modeling is associative modeling. So I get concerned about rational sort of allocation decision with scarce resources, or said another way, how do we do comparative effectiveness research on social networking. I know it adds value, I get it. But I think somewhere along the way I think the best thing we have to prepare for figuring out how to arrive at the data and make sure the data is there to do the studies.
MR. REYNOLDS: We got Don, Ed, and then Larry.
DR. STEINWACHS: I was just going to push you a little the other way.
MR. REYNOLDS: And if you just ask one you're going to be boring as crap.
MR. HOLT: - I managed to get the first six that wipes it off.
DR. STEINWACH: It's clear I cannot keep up with Blackford. I have already lowered my IQ rating, and I know I'm not there.
In some ways what you've been talking about really are illness management systems, and you talked a little bit about your own experience from the health side. It seemed to me one of the advantages of this, Blackford points out that all the different options there may not be ones we have any evidence about, but still people choose, and maybe it's just preference, which may not be all that bad. Because many times in the health or illness encounters we don't know as patients what all the options are.
So this is partly I think sort of opening up, and much is the websites where people report all the things they do in trying to manage their disease that the clinician never knows about, so is there much on the health side of this? Because this has huge potential it seems to me, and raises very interesting issues on the illness side, but there are a lot of things many of us could do if we knew all the options. I know I can lower my cholesterol by eating oatmeal, is that true, I don't know.
MR. HOLT: So let me answer that, because this is just to give you a sort of range coming from the point of view of a guy who has to deal with people saying can I speak can I speak to you in confidence, which is –
I think for the first one of these in 2007 there were 40 people presenting different little demos and what have you, of those I think probably 35, 30 were sort of viable, and the rest were a bit flaky. And when is say viable I mean – I paid to come to that conference –
But for the one in 2008, which was only a year later, we had more than 170 applications of people who built something, not something I hadn't heard about, but there was pretty big growth in this. One of the areas had a lot of growth, because the entrepreneurs think there's money behind it, is wellness, because they believe there's a corporate wellness market that will pay for all this, some of the interest in developments – one is of the online health sites that make money by charging people to subscribe, consumers. The most visible group is the diet sites. And that's kind of health, because if you can fix your diet. So I would say that's already sort of on the way.
There is also growth in a few companies, one, Sensa, which is your company, which has an interesting sort of we'll put you on the Mediterranean diet, I don't think yet we'll send you the food, I would imagine.
DR. STEINWACHS: Does that include they'll take you to the Mediterranean?
MR. HOLT: I think that's extra. Maybe if they save enough from heart transplants, or whatever, you know. If you join Humana you get a free trip to the Mediterranean.
[Laughter]
MR. HOLT: They don't have a plan in California, you can visit local, yes. But there is for example, Google or something, it's like a new company called Keers(?), which is essentially trying to like get to the people who have got their lab tests, you've got their food, you could explain to them if you could walk five miles instead of driving or whatever. There are a lot of people thinking along those lines. There are a lot of wellness sites like that.
Again, the problem is to me how does that get integrated with the rest of the healthcare system, because honestly before there was internet Web 2.0, yes, it was always a good idea to not smoke and to exercise or whatever, and we never integrated that with the healthcare system well before, your physician may have bothered you about smoking, but it came from other sources. And I think honestly yesterday I heard a number of comments at this integrated summit, a medical summit, going back let's talk about fast food, let's talk about smoking, all these kinds of things, which are not strictly under purview of HHS and the healthcare system.
I think that's a similar issue. The question is it is worth it? It's probably a question for Paul and for the Kaiser folks, does it make sense to go back down the scale and try to find people who should be in this kind of environment, and, you know, actuarially does it make sense to get them into these kinds of programs, and do they work. It is early days, and my guess is it probably has an impact.
MR. REYNOLDS: Matt, do you have a comment? And then, Carol, are you following up on this?
MR. QUINN: I was going to say a great example, and I can speak of this from personal experience, of where wellness is health is meeting sort of people's everyday lives. And it even gets into more medical sort of issues is something like babycenter.com, which is if you have a baby, not me, my wife, then it actually tracks along. And there are communities that range from everything from, you know, the initial stages are actually having the baby and preparing for the birth, but also following up, living your life after that. So it gets into diet, it gets into post-partum depression, it gets into all these other issues, so it sort of blends together. The means for doing is that it send you this update on how old your kid is, or how far along in your pregnancy. Then there are polls, without OMB approval you can poll hundreds of thousands of people.
But these self-segmenting very niched communities, and the same is probably true of people of hang glide, there is a niche community for them that is how do you -
MR. HOLT: Actually I'm in it, it's just a boring list serve, by the way, it's just a list serve.
MR. QUINN: I think it's even broader though, than just what we would call Health 2.0. It's people living their lives, and this blurs into health and life.
MR. REYNOLDS: Carol, did you have a comment on this?
MS. MCCALL: Yes. And I'm going to go back to what Don was really asking about, the distinction between health and healthcare, and these models.
I don't know if folks saw this, we actually did a press release on New Year's Eve, and it was obesity has a price. And the bottom line is that like sugar and butter, I actually was the one who had the opportunity to do the math, for every pound we are overweight the annual additional healthcare cost is $19.39. And it starts at about $10.00 when you're about 20, and it goes up to about $30.00 when you're age about 65, and when you do the math and you scale it up through the United States, we're 6.5 billion pounds overweight, and that translates into $127 billion additional dollars that we pay every year for that and how overweight we are, for overweight and obese.
So the question was does it pay actuarially to do this, I think research has shown the evidence base is strong, not just the cost per pound, but that health is vital, and the pursuit of health even more so, and that health is related to healthcare but they're not the same. And from an actuarial model what I would say is that if we could do something to just change the business model, we're stuck in kind of a short-term ROI trap, that's the main issue. So it's not about whether or not it's valuable, it's about whether or not there is enough time for however it's going to get funded and however that gets put together for it to have a payback. No one would ever expect any other business or industry to invest heavily in something whose payoff comes five to ten years after their customers go away. And yet reform can turn those business models inside out, upside down, fundamentally change the value proposition and the equations, and it can all just be so different, just so fundamentally different.
I think that those are really the things to look forward to.
MR. REYNOLDS: I've got Ed, then Larry, and then we'll try to get John.
DR. SONDIK: Thank you. This was really fascinating. I was kind of wondering along the lines of Blackford, kind of on the other side of that, the market side, so to speak. Given that this information is out there, is there either sites sprung up that are critiquing what's done, or is there scholarly work that has been done on that fascinating one that you showed us on ALS or the like, I which, you know, it's just you know the whole thing about how to lie with statistics and all of that, well it's even easier to lie with graphics and all that.
Then when you couple the two together you've got something that is tremendously compelling. Boy, talk about caveat emptor, I mean it is interesting to contrast that with the examples that Matt just gave. I was thinking that when we had kids we had a community, and that community happened to be within one square mile, and we didn't live where our parents lived, so the acquaintances we had. And you know when you're in that mode everybody's pregnant it turns out, it's quite incredible. So there was a tremendous amount of experience in all of that that kind of gets shared. Here the community is multiplied by a factor of several million I suppose.
But to come back to the other point, is the critiquing springing up? I mean I would hope that it is, although I must say there are rules of evidence and rules of evidence. And you look at the trials that go on in England, some of the what do we call it, the low data, not low data, but the minimum data clinical trials that are done and so forth, you have to look at those in a particular way to understand the results. You have to sort of put on a classical and a Bayesian hat at the same time.
I'm wondering, this may actually be a kind of a role for this Committee to talk about at least a little bit where this ought to go. I must say I am both tremendously impressed, and at the same time I'm really very wary of this because the numbers make it seem to credible, the magnitude is what I'm saying makes it seem so credible, and yet I would like to see some sort of feedback that says that it is in terms of the information that is being given.
MR. HOLT: So there are two things which I am going to tell you, neither of which I really understand more than 15 percent about. The first one, and I was thinking this might come up today, so I went to work for the Institute for the Future, having never heard of this thing called the “Delphi Method” that apparently is a very popular thing invented in the 60s at Rand, and there's a science fiction novel book writer in which everyone bets on what the Delphi pool is going to predict, and the idea of very large numbers. And it's the same thing with theme show Who Wants To Be A Millionaire, ask the audience and the audience is always right.
So there has been sort of the pop, I wouldn't say – there's been a lot of work, academic work done on this. James Surowiecki from New York has written this book called The Wisdom of Crowds, which looks into this. And basically there's the argument for the side which is if you get the crowd structured in the right way with certain prerequisites to how it's led or how it's structured, how it's asked a question, the crowd will tend to be smarter than the smartest people in it, so you can expect that the answers you're getting out of something like that are likely to be correct. But then just as well as with any other research you talked about you have to go and look at how it was actually done, and whether it fulfilled those criteria.
So I will shut up about that because I'm the guy who read the book once and barely understood it. But there is certainly some academic research behind the concept of this whole wisdom of crowd approach.
The next question I think then is how does that equate to something where we have very little information, because we haven't really looked at it before. I would say things like, my issue is traditional randomized clinical trial done by a drug company it seems to me is the way it works in practice, and this is a gross generalization but it has some grain of truth, is you figure out exactly the few discreet numbers of people who this drug might work on, you do the trial with those few individuals, and once the result comes out you generalize it to all kinds of other people in everyday practice, and then it gets used on or off label as well.
I think the classic example was the clinical trial around cabbages back in the 80s or 90s, late 80s I think, which was only done on white males under 65, and we do all kinds of heart procedures on all other people without having done the research.
To me it is the same problem, and the academic research into the healthcare side, this is really, I mean there's Jerry Kane at Boston College who just started looking into this, but it's really early days. I think a great thing for this organization to spend the $1.1 billion is to write some grants and go look into this, and find the young academics who want to look at this in a critical way, because it's really just started. Most of the critiquing back and forth has been about whether there's a business model behind it.
Silicon Valley and the online investment communities is here really early, this looks and smells like something where they can make some money, so they have been looking at how do you make money out of this thing first, not what is the social good out of this thing. I think many of the people doing these communities or behind these communities and these online tools are actually coming at it from a place where they're thinking about the good health of their brother, their family, their friend, and not looking at it from that way. So I think they would welcome a lot more inquiry about this.
MR. REYNOLDS: Larry.
DR. GREEN: I really enjoyed the last 45 minutes, and appreciate you coming.
MR. HOLT: It must have been dry this morning then. Giving you a hard time. Thank you.
[Laughter]
DR. GREEN: Well, that's another conversation. An observation, and then I want to ask you a question about your fourth arrow.
The observation is I have sat here listening to each example of phenomenology, something that now is happening. What strikes me, putting on my hat as a physician, I did not detect human phenomenology that I have not observed my entire clinical life. What is different is scale, scope, and velocity, and the technology that is being used for the phenomenology to be expressed.
We can borrow physics, when you start changing the velocity, scale and scope of things, they often turn into something that is quite different from what they started as. That is my angiolytic. I can listen to all this sort of stuff and feel very calm and sort of excited and very pleased with it all, because it actually is anchored in a lot of human history, and it is expressing it in a different sort of way that is just sort of a privilege to be alive while this is happening in my point of view, because it's so interesting.
My question about your fourth arrow is anchored in the Committee's charge, and mission, and what we are statutorily obligated to do. We're supposed to be helping figure out the national health information network and what it takes to get it there and make it work, and particularly what it means for statistics and the derivation of knowledge that's of use for public good out of it.
So tell us, what must we be sure is an attribute or a component of the national health information network to capitalize on this spontaneously going on stuff?
MR. HOLT: My suggestion would be that, I don't know if it's in the $17 billion or where it is, it's somewhere in the process that when we are talking about rewarding/punishing, rewarding those who do and punishing those who don't financially, or trying to change information collection, that we should look at two things. One is I think encouraging the integration of information from all sources, including patient communities and some of the things I've discussed, and some things I haven't discussed like some of the early online attempts to put GM investigation online, the 23 million – and others, including that kind of stuff. That gets back to kind of Blackford's remarks. I didn't talk about that, but that's a part of this. They are very early stages, but they have an interesting role.
But I also say that it's one thing to encourage the stuff that's out there now, so whether it be one of these community groups or Google Health that is collecting all the data or Microsoft is collecting a lot of data, to encourage them to have a voluntary contribution from enough people so that their anonymous data could be somehow integrated and used. I don't know quite how that works, but to get back information from these communities.
Then the second point, probably more important, is to encourage – I think Paul is already doing it, Palo Alto Medical Foundation and many other people are already doing it – is that if you're going to be receiving patient information, if you're going to be receiving federal dollars, or even anybody who is recording patient information in their clinic, their hospitals, long-term care, wherever they're doing it, should be trying to capture as much of these other data sources as possible. And if it is looking at the totality of the patient's life and where they live. So one of the things that comes up, and this was raised yesterday by Bonnie (?) in a conversation, it's great all about exercise and all the rest of it, but if you're a 73 year old woman living in a trailer in southern California and it's 104 degrees outside you're not going to go and run five miles. We need to figure out information like that about how people are living, things like do pets in the household lower stress and blood pressure, and how many, do you have a cat or a dog, is it good or bad, or fish. You're sitting with one of the world's greatest fish collectors, she actually goes to South America to buy fish. It's really the national wildlife folks in the room – anyway. But that kind of stuff, I'm talking about getting other data.
Because I think I would add into this the folks from Connected Health, or the many different connected healths around the country and the planet, but the folks in the continued health alliance, we're talking about how do you get information from other data sources like devices and what have you that patients use at home, how do you include that in these databases. Then finally it's not very far along, but we're getting smarter and smarter homes in terms of putting information technology in our homes, collecting more and more information. I think I would argue to include those. I don't know how you actually -
DR. GREEN: If I can, I listened as hard as I could, and I'm not sure I heard what you said, but I think I did, and I'll say back what I heard and then you can fix it, okay? One is I heard you say include non-traditional patient communities on the national health information network, need to have a spot on it, need to have an input and a way to get the stuff into it. Right, something like that?
MR. HOLT: Yes.
DR. GREEN: I heard a second thing, that there is a great need for comparative based studies as the data and knowledge that comes from those sources compared to the other sources that we might call traditional sources; is that right?
MR. HOLT: Yes.
DR. GREEN: Then a third thing, you said it would be very nice if the people providing healthcare could be incented to use the knowledge available from these sources to the benefit of the public?
MR. HOLT: I also think collected, because my concern is that they will be rewarded for furnishing information about what they do in their office in their practice, and not looking at the wider patient experience.
DR. GREEN: Close enough?
MR. HOLT: Yes.
MR. REYNOLDS: Okay, I want to move onto – oh, Matthew, first, great.
DR. HALAMKA: [Via Telephone] The 2:30 testimony I was supposed to do?
MR. REYNOLDS: Yes, John, just one second.
DR. HALAMKA: Sure.
MR. REYNOLDS: Thank you. I'm thanking Matthew Holt for finishing up, but great job, really appreciate what you did. You stimulated exactly what we wanted to do, you were identified to us as a thought leader and you did not fail us in any way.
MR. HOLT: Thank you very much.
MR. REYNOLDS: Thank you very much.
Now I would like to turn it over to John Halamka. John, how are you doing?
DR. HALAMKA: I'm doing very well. Always a pleasure to do testimonies for NCVHS, and of course all my friends, they already know all this stuff.
So we have to chat about non-traditional sources of data, we'll focus on some user entered data. But I wanted to just mention a few other things too, if that's okay?
MR. REYNOLDS: Yes, please.
DR. HALAMKA: First, I sent the slides back ahead, which I hope you guys got.
MR. REYNOLDS: Yes.
DR. HALAMKA: About the traditional role, what is traditional data is important. And when I look at the fine work that Paul Tang is doing on high tech, and a lot of the quality measurement I do regionally, the definition of traditional data mostly is claims data that is aggregated from hospital sources, so from Beth Israel Deaconess has a huge case mix database that – claims that we have submitted for the last 30 years. And of course all of our payers in the region have large claims warehouses.
Sometimes what we are starting to see regionally is that claims warehouses are being combined together, and we try to normalize vocabularies so we can do quality analysis on a population of Blue Cross, (?), Medicare Medicaid, and so our physician organizations have aggregate claims warehouses.
And in the states we tended to also aggregate these so we can do benchmark comparisons across health systems. That's what we've done for a decade. So our traditional data sources are all these administrative claims, and there are some pharmacy claims that are of some valid use for clinical-like data. But mostly these are things with ICD-9 diagnoses, and lab tests without lab results, things that are very challenging to use for highly granular clinical quality and outcomes analysis.
What we are starting to see, and this is onto slide 3, is we're developing a variety of much more clinically oriented data sources to help our quality analysis, and we'll get to in a moment some of the Google Health and Microsoft Health Vault stuff.
But what we're doing at least on the provider side is we're creating business intelligence datamarts, where we're taking our clinical transactions, and every night at 2:00 a.m. we move those from a transactional system into a more longitudinal relational system that allows us to ask queries such as not what was Mrs. Smith's hemoglobin A1C, but across all patients with diabetes in the last 20 years between the Joss(?) and Beth Israel Deaconess what are trends in hemoglobin A1C, creatinine, and how does that correlate with age and weight, these kinds of things are now over the last couple of years becoming a much more granular way for us to do quality measurement. And datamarts for us we have tended to invent, and we tend to evolve these things based on the nature of the clinical questions that people are asking, and therefore every year we get more and more granular data.
Partners is doing the same thing. Blackford I'm sure can talk about the RPDR, that they have a very similar set of datamarts and repositories that are really new and emerging sources of clinical data for granular quality analysis. That is great if you're in a Partners or a care group, but what do you do if you want to look across a bunch of solo practices where you may not have a lot of hospital affiliation.
So Micky Tripathi at the Massey Health Collaborative has created a quality datamart for 600 practices through the Massey Health Collaborative. And what those guys do is they run clinical works in Allscripts, NexGen, and GE Centricity, and they are as part of participation in the Massey Health Collaborative required to submit uniform datasets to a regional quality data warehouse.
In fact, we feel so good about what Micky has done, I actually have a meeting tomorrow, as to how Beth Israel Deaconess and its thousands of docs will now contribute to quality data warehouse, and what I hope is working with Paul Tang and his group that we can actually do a pilot for HITEP and some of the quality indicators that are coming out of the NQF, how might we use HITSP standards and Micky's warehouse and Hightep's measures and actually demonstrate how a whole region can do quality measurements from EHRs and hospital information systems to a regional quality warehouse.
Now, one of the problems we're having with the payers in Massachusetts is that everyone of the payers is starting to wakeup and say administrative claims data is not good enough, I want lab data, so you hospitals provide me on a monthly basis with an extract of 423 data elements, oh and by the way every payer wants a totally different extract, and try to get these to the payers in some uniform manner, and by the way every payer has a different designation for what lab tests they want and what they're called, there's no standard vocabularies. It's a complete nightmare.
I have had meetings recently with the payers saying might we through our regional health information organization mass share, figure out a way to submit to the payers from the providers a uniform set of laboratory data so we do this one time in one vocabulary constrained fashion, and this now enables the payers to have more clinically oriented datasets for disease management, chronic care management. It's all RHIO-based transactions going from providers to payers.
Another novel data source we're starting to see, Rx Hub and SureScripts have nice data from pharmacies and PBM that gives us longitudinal medication lists for patients. We're using those for medication reconciliations, but it also helps us understand a bit about as a community what medications are being used, we can correlate that then with some of our own administrative databases and look to see if best practices are being followed, so are people getting beta-blockers post-MI, are they for diabetes getting appropriate medication. It's nice to go beyond a single hospital system and look actually more at a national medication list, a community medication list, SureScripts Rx Hub.
Part of the HITSP work that we did over the last couple of years on expanding and standardizing lab data transactions, is that HL7251 with LOINC is the standard that we'll use for a result, that by the way you'll also have certain elements of demographics that will be included with every transaction so you can start using laboratory data flows from Quest, Lab Corp, hospitals, and they can be used for actually secondary uses like quality measurement, biosurveillance, public health reporting, etcetera. So the good news is that as labs move to a nationally standard form not only will there be EHR lab exchanges but the same data flows could be used for quality analysis.
The Social Security Administration spends about $500 million a year on paper medical record retrieval for their disability claims adjudication, and recently Beth Israel Deaconess worked with SSA and implemented HITSP standards to exchange clinical summaries so the patient signs a consent, that consent digitally is transferred to Beth Israel Deaconess, and then Beth Israel Deaconess does a longitudinal lifetime medical record exchange back to the Social Security Administration, all without human intervention. The whole process takes about 30 seconds end to end, and everything is vocabulary controlled so that the SSA can actually now run business rules against the data stream and do near real time adjudication of a disability claim. So it saves money, it saves time, everyone's satisfied. It is a good model for how might you use a nationally standard form between organizations and the federal government that want to do something novel, whether that's disability or quality analysis in a hospital, and do it without a huge amount of burden on the IT department.
We do something very similar. We do about 4,000 data elements to the CDC every day from our clinical information systems, using standard formats. In fact, we're using the HITSP form for the biosurveillance transactions, and we're doing this also XML going from our clinical information systems to CDC. Again, a model and a novel way of how might we transmit population data, and their cases of biosurveillance that certainly could be used for quality.
Medical societies like the Mass Medical Society are starting to also recognize the need for quality indicator, both aggregation and analysis reporting. So they are working with Micky Tripathi and the Massey Health Collaborative clinical data warehouse, and looking at novel ways to do scorecards, benchmarks, risk adjustment, quality indicators. They are focusing more on the reporting side. Micky's doing the aggregation, they'll do the reporting, we'll service the physicians of our region.
We have a lot of novel data exchanges with our local departments of public health, more along the surveillance side and infectious disease reporting, but similarly going in web-based XML structure from the hospital to the Department of Public Health, enabling them to do very accurate clinical data analysis, not administrative data analysis.
Back onto the user entered stuff, because I know that was a topic Matthew covered, Continua Alliance, 200 organizations working together, to come up with consumer healthcare devices that will get us data telemetry from the home, from glucometer measurements, blood pressures, scaled, you can imagine a whole variety of devices in the home that would send the data to PHRs and EHRs. This is interesting because now we have the patient in control of the device and if we actually want to discover not just what care was delivered, but actually the outcomes of care as measured by patient body weight, as measured by their blood pressure control, the glucometer readings, the Continua devices using standards that have been jointly developed by HITSP and Continua give us some novel data streams. Microsoft Health Vault has worked closely with Continua, and one of their products you'll see this year is how do you actually get into that Health Vault, a standard form that can be used for a whole variety of purposes. You might imagine the patient aggregating the data in the Health Vault, and then using the third-party affiliations and the application program interfaces for Health Vault, transmitting it all to quality measurement organizations or others who may provide advice based on some of the telemetry gathered.
Done a lot of work on PHRs, and the three forms I want to talk about are, one, we have a hospital provided PHR which is tethered to the EHR, and that has both a function to display all data in the clinical records of the patient, but to also enable the patient to add data, annotate the clinical record, put in glucometer measurements, add medications, add allergies, add observations that may have come from outside physicians.
I'll tell you a real challenge, and I didn't hear Matt's presentation entirely, how do I describe this, we're not always sure how accurate the data entered by the patient through this modality is. One example we had was a patient had heard a diagnosis from a doctor, and that diagnosis was something like spinal meningitis, and the patient put in “Smiling Mighty Jesus” as the diagnosis. So okay the patient entered free text diagnoses may not be the most helpful, whereas something more objective like coming from a glucometer or coming from another data source like a pharmacy PBM being transcribed by the patient may be more relevant.
I guess on the tethered EHR with patient entered data the quality of the data has not been too trustworthy. And I think that does contrast ca bit to what Google has done. We've done a full integration with the Google health product, where Google Health has two interesting aspects. The first is it allows the patient to aggregate their own data from multiple data sources, including Beth Israel Deaconess, Cleveland Clinic, CVS, Longs, Walgreens, Quest, and therefore when we look at that data stream it actually has the non-repudiation qualities, that is it isn't patient entered data per se, it's patient gathered data, and there is an indicator on each data element as to where that data came from. And the patient can apply privacy flags to mask the data, but they can't change the data. So that is if we get a data stream from Google Health and it says oh here are twelve medications and the source is Walgreens, we're going to actually take that as highly reliable data. So sure there can be patient entered data that has the same problem as with our patient PHR tethered to our EHR could be misspelled, could be inaccurate, but hey if I look and I say it's not patient entered specifically, it's just patient gathered from multiple data sources, that's actually pretty interesting and relevant and helps us in things like medication reconciliation. And yes it may be incomplete, but getting aggregate data from the patient from multiple data sources is a whole lot better than nothing.
Health Vault, you know, a similar model where the patient can aggregate data from multiple sources, especially as I mentioned the Continua Alliance device data, and then can transmit it to us, can share it with us. Both Google and Microsoft are working on novel data sharing kinds of activities that I think over the next year this notion of patient aggregated data, from multiple trusted data sources, being then shared with hospitals, quality measurement organizations, public health entities, with patient consent, is actually going to be a really interesting novel way to gather information that certainly is much richer than administrative data sources.
One other quick comment about Google, Google Trends, if you go to Google you go to More and then you go to Google Labs and go to Google Trends, you'll see that you can actually look in really not so much a quantitative way, more of a qualitative way at every search that's going on on the web, so you can actually put in the word “fever” and look at how many people over time are searching on “fever” and where they are. This is an interesting way if you want to use this as an early indicator for what the flu season may be doing, outbreaks of certain types of diseases, Google Trends may be giving you sort of a proxy and a kind of innovative data source to see what symptoms people are searching on, and therefore it actually may be a kind of biosurveillance tool.
Locally we have developed something called “Aegis,” developed by Ken Mandl, he is probably going to chat about that, but it's a mechanism for gathering data from all of our emergency departments, and that being able to look at influenza outbreaks. This is available on the web publicly at our Catalyst site, at catalyst.harvard.edu.
Also one aspect of Catalyst, this is our clinical translational science awards site all publicly available, is we've created some unique data mining activities. This particular part of the Catalyst idea is password protected, but if I move onto slide 5 where we have built XML filters on top of all the clinical data sources in all the harbor hospitals, and with IRB approval for some types of queries you can simply say hey Mass General, Brigham, Dana Farber, Joslyn, Harvard Pilgrim, Beth Israel Deaconess, tell me some interesting questions. I happen to show you one on this next screen, I want to know what are the age distributions of all asthmatics and all obese people at all hospitals associated with Harvard, go, and it doesn't actually store all this data centrally, it's just a highly distributed federated query using XML exchange to then get a nice result that in this particular case didn't actually require the use of patient identified data, it was all done within the firewalls of the institutions, and then the results transmitted back.
If you look at the last slide what you can see is here is a real time analysis across 17 different locations of the age distribution of these two diseases, which show you for example that asthma starts young and then you see peaks and valleys and then these people actually tend to live for a fairly long time. But hey obesity that actually doesn't start until you're 15 to 20, and by the way all these people die, and they're rapidly starting to diminish in numbers by age 65 and above. So this is example of how to use again existing data sources in novel ways using a community federated construct.
In summary, I think we're starting to see in our region quite a lot of interesting non-traditional approaches to gathering data and measuring quality, and I certainly do believe the PHR, especially the aggregation of data by the patient and sharing of that data, and the use of device data are going to be very important to emerging novel sources for quality measures.
Happy to answer questions.
MR. REYNOLDS: Thank you. As usual, very rich but concise. Thank you very much for that, and again, congratulations on all the things you're doing nationally. You're making a difference. Leslie.
DR. FRANCIS: I'm the co-chair of the Privacy and Security Subcommittee, and I wanted to ask you about patient aggregation and also actually about patient entered information. Part of our goal in this is to learn about what we ought to be thinking about over the next while here at NCVHS. And I wonder if you have any comments for us about what your experience has been, what novel developments you see, what questions you see that we might want to be thinking about with respect to privacy and either patient entered data or patient's ability to control aggregation. Any new things on the horizon that you think we ought to know about?
DR. HALAMKA: Absolutely. I was on the Google advisory council, Paul was too, and we put together a set of policies around Google Health that ensured that since HIPAA doesn't cover Google or many of these PHRs, right, they are not covered entities, you want policies that are stronger than HIPAA. Of course, with all the new Stimulus package and the new comments about privacy we might actually start seeing extensions of these guys, but they're not really business associates, but maybe not, but we'll see. But you definitely want to say oh Microsoft, Google, you got a policy that the patient is in control, we'll never advertise based on this data, we'll never share the data with any third party, we'll never be mined, and if you delete it it's gone. You the patient are totally in control.
So you build that level of trust and then if the patient decides hey they're feeling altruistic today and they would like to share their data in an aggregate way with a quality measurement organization, they just like you can on Google sign up for any third party service and say hey oh I see there's a quality measurement organization that is going to provide value to humanity, and by the way may give me feedback on some things to talk to my doctor about, and I control it, I'm going to sign up for it, oh and at any time I can un-sign up for it, and absolutely ensure that not only does the primary site like Google or Microsoft adhere to all these best practices, but all third party value added providers or external partners adhere to the exact same policies.
Today what happens is Google actually goes out and validates before they even allow a third party to link to their site that they adhere to all those same policies and best practices, and if for some reason they ever violated trust Google would dump them immediately. So it may be, given that we seem to be the country expanding HIPAA beyond covered entities to now actually business associates are going to conceivably have the same civil penalties, I think there has been a kind of interesting movement to suggest maybe the Googles, the Microsofts, these PHR vendors, should be held to some similar standard. They are doing well today, they are self-policing, they're coming up with policies that are as good or better than HIPAA, but maybe we actually need to be a bit more proscriptive about that.
MR. REYNOLDS: Justine.
DR. CARR: Hey John, great presentation, thank you. Nice to catch up on what's going on.
The uptake on the Google and Microsoft products, can you say a little bit of that. I realize there are only about not quite a year old, but what percent of people have been signing on for that?
DR. HALAMKA: Sure. The current statistics that I have, just to give you guys a background, the patient site PHR that is tethered to our HER has been around for about eight years, we have about 40,000 monthly users of that, and the users come and go because there's chronically ill people, they are on it for a while, the people with acute disease, may say hey a PHR provides great value for me while I'm getting acute care treatment but hey then I'm better, I don't use it very often, so I let my password lapse. So of the 40,000 monthly users, about 5,000 currently share their data with Google Health, and about 1,500 share their data with Microsoft Health Vault.
The difference between Google and Microsoft is I think twofold. One, we have been live with the Google site since May 19th of 2008, so we're coming on almost a year. The Microsoft I think only went live in fall, so it's not been up quite as long. Also the Google product tends to be very patient friendly, it's a user interface that is a full PHR, whereas the Microsoft Health Vault is more of a storage container where the idea is you put all the data there and then third parties will develop cool applications that you can share your data with, but those cool applications are still in the process of being developed, so I think some users are not having quite as rich an experience with the Microsoft Health Vault yet as they do with Google, and that may be why there's just a little less uptake.
So far, just to tell the group, I have had a very positive experience with both organizations. It took a matter of days to build the interfaces to Google and Microsoft, they are very straightforward web-based, based on some stuff that is pretty close to HITSP standards. In the case of Microsoft it is HITSP standards, and in the case of Google it's CCRG, a Google specific flavor of the continuity of care record, but straightforward interface, very reliable, has not had any issues with security, and have had no support issues whatsoever. Of the thousands of people who are using them I had one support call, and that was related to a gentleman who was running Windows 98 Second Edition with Internet Explorer 4, the java script wouldn't work. So that's it. I mean it's been a very, very good.
MR. REYNOLDS: That person may be closer to reality than the rest of us.
DR. CARR: Just on follow-up, John. Of the 5,000 of patients that have signed on, do you have an idea of how many have remained active after initially signing on?
DR. HALAMKA: I don't have the exact statistic, because we look at to determine active users is the number of data transfers that take place. So when I actually said 5,000, actually that's the number of data transfers I'm seeing each month. The way that just to briefly technically the way that Microsoft and the Google products work is there's both pull and push, that is the patient can sign up and pull their data in, and there is the technical capability then for once the linkage between the hospital or the pharmacy or the lab is done those data creators can push updates. We haven't actually implemented that piece yet, so anytime a patient wants to update their Google health record they re-pull the data, so we're seeing about 5,000 pulled a month, 5,000 users pulling their data a month. There seems to be pretty consistent use, but I don't have exact statistics on who's come and who's gone.
DR. CARR: Thanks, John.
DR. SUAREZ: John, hi, this is Walter Suarez.
DR. HALAMKA: Hi.
DR. SUAREZ: A couple of points I wanted to make I guess on the privacy side. HITSP has an actual harmonized standard for managing, capturing patient consent directives, so I think that's something that it would be helpful to bring up to the attention of the Privacy and Security Committee.
The other thing is on PHR interfaces, John, that you have, I think you mentioned this or might not have mentioned this but certainly you are one of our poster boys for HITSP, and your organization is a poster organization for HITSP, so you've been implementing those, but we do have also a harmonized interoperable exchange standard with PHRs. Is that something you are implementing in there as well?
DR. HALAMKA: So the Google folk have committed to adopt the continuity of care document and all the HITSP standards around EHR PHR interfaces, but their logic, which is reasonable, was they were over two years ago when they started this project HITSP hadn't yet had a recognized standard in that regard so they went with the CCRG, their own flavor of XML they thought would do the job. Microsoft was a little later, the work that HITSP had done was ready and therefore the Microsoft folks have fully implemented the continuity of care documents which we call the C32 clinical summary between EHRs and PHRs.
When we look at the way the data is going back and forth to Walter's point, we have a document called the TN900, which talks about a whole variety of secure transport mechanisms to protect security, and the standards that are being used by both Google and Microsoft are completely consistent with those, although they haven't gone as granular as we have with regard to some of the things like consent access control, the way in which the data is going over HGTPS, using soap envelopes, that's very, very consistent with the HITSP stuff.
I think the HITSP work is getting some traction from PHR vendors, and you'll in the interoperability showcase at HIMSS this year quite a lot of demonstration of exchanges of data using HITSP standards from Continua on the device side into EHRs and PHRs, and EHR to PHR exchanges. So we're getting it out there.
MR. REYNOLDS: Yes, Matt.
MR. QUINN: Dr. Halamka, this is Matt Quinn from AHRQ. Thank you for your presentation today.
I had a question about the Social Security Administration project. It seems like the special sauce in that is in taking clinical data and turning it into – and having that standard vocabulary and that allows the query ability and the analytics. First, can you talk about the process for doing that transformation, how applicable it is or necessary it would be to do it on a broader basis, and then what that portends to doing for secondary use of data, and analytics on a regional or national basis? . Thank you
DR. HALAMKA: Sure. We have spent a lot of time in all these various projects that I've mentioned to you, trying to create some magically interoperable data exchanges because the data is really only useful for quality measurements, population health measurements. If you're using for labs, Rx Norm for medication, SNOMED CT to describe problems, the problem is that a lot of the underlying data sources actually don't use these nationally standard vocabularies natively in their applications. We end up doing quite a lot of mapping.
What we have done, for example, in this Shrine example where I talk about how we aggregate data across 17 Harvard hospitals is they're actually mapping tables at each local node that can map the local vocabularies into a common vocabulary that is used across the Harvard system. And that has taken a fair amount of work to develop.
We do try to leverage all the work in the National Library of Medicine, and that source wherever we can, but it is still I would best describe it a work in process because the vendor-based systems that many of us have implemented aren't natively using the vocabularies that will make the semantic interoperability easy. So our best short-term activity is to just do the mapping, knowing that that's imperfect, and hopefully over time we'll start capturing the data in standard vocabularies natively.
MR. QUINN: Just a follow-up. It is extremely important for individual health obviously to have a high degree or a perfect degree of accuracy, as high as possible for that. But looking at population health especially on a bigger and bigger basis, what is the applicability of natural language processing or less precise methods where there is latitude for wiggle room on something like that?
DR. HALAMKA: We have had mixed results with natural language processing. Let me give you an example. Suppose I have a discharge summary that says, “The patient always uses alcohol swabs to clean the skin before they inject insulin.” Well, the NLP system sees, “The patient always uses alcohol” and immediately declares them oh this is a person that has a substance abuse problem.
Certainly you can imagine mapping that is not totally accurate between ICD and SNOMED, or representative NDC code because we don't know the exact medication that they're on but hey we'll give you an NDC code for that medication, it's close enough. That kind of thing seems to be okay. The NLP, yes, there's certain kinds of data mining you might do to help identify patients of interest that then require manual review. At least in the work I've done today the NLP has not been good enough for us to do – for example.
That's definitely an area to keep pursuing.
MR. REYNOLDS: I want to thank you so much. Again, thanks for being very prompt and for spending your time and continuing to drive this and helping us understand the subject a little better.
DR. HALAMKA: Well, absolutely. And I live by email should any of you guys have questions. And what I did to prep for this testimony is I wrote a blog about it, so everything I've said is actually on my blog, geekdoctor.blogspot.com. And I also included links to several of the systems that I described, so you can actually look at them yourself.
MR. REYNOLDS: Great, John, thank you so much, have a good day.
DR. HALAMKA: You too, thank you, goodbye.
MR. REYNOLDS: Okay. That completes the discussion of that subject. Both Matthews up here, thank you for enriching the subject quite a bit.
Do the gentlemen from the Populations Subcommittee have a letter? If we can get that out so we can take a look at it. It's true you guys have a hearing tomorrow, so whatever we discuss today you'll be able to work on some tomorrow.
What I would like the Committee to do as much as anything, we're going to look at it as a group today to see if there's anything anybody recommends. They can look at it again tomorrow as a group if they have to, because they're going to work on it. Then whether or not we send it to the Executive Committee and what we do, or do we want it out today?
Okay, so this has to be voted on today.
MS. GREENBERG: That doesn't mean it can't be fine-tuned tomorrow.
MR. REYNOLDS: Wordsmithed, okay.
MS. GREENBERG: I think it probably should be sent on Monday.
MR. REYNOLDS: Okay.
Committee Discussion for Follow-Up
DR. HORNBROOK: The first sentence the word “upcoming.” The President isn't upcoming; it's the health reform plan that's upcoming. English is very strange is about where you put adjectives and how it could be written lots of different ways.
MR. REYNOLDS: Who is going to deliver the letter from the Committee? Yes, we need to read it, that's the way we used to do it.
DR. SCANLON: This is addressed to the Acting Secretary. It begins:
“The American Recovery and Reinvestment Act of 2009 (ARRA) and President Obama's Health Reform Plan recognize the critical importance of healthcare to our national well-being and the economy. The ARRA substantially increases our investment on health IT, comparative effectiveness, and prevention and wellness initiatives.
To improve the population's health and to increase the value and efficiency of healthcare provision, it is essential that we have the capacity to measure the return from these investments in terms of quality, safety, efficiency, equity, accessibility, and longevity, both to assure accountability as well as to guide future steps.
To achieve this capacity, NCVHS recommends that adequate funding and resources be made available,”
And this is the first change I would suggest, since we were doing that on the fly we started focusing on NCVHS and then we need to expand that focus, so we'll drop the two NCHS and instead it will read:
“To achieve this capacity, NCVHS recommends that adequate funding and resources be made available to assure a robust vital statistics and population health information infrastructure that can produce rigorous, unbiased, statistical metrics of the nation's health and healthcare.
In particular the Committee recommends that the funding be allowed from the Recovery Act to the following two areas:
Number 1, E-Vitals. An electronic vital records data collections processing and analysis system is at the core of a fully functional Nationwide Health Information Network. The National Vital Statistics System (NVSS) is the oldest and most successful example of intergovernmental data sharing in public health. Each year close to 7 million births and deaths are collected by 57 jurisdictions across the nation and provided to the National Center for Health Statistics. Investing now in electronic birth and death record systems to support the implementation of modern information systems and make them interoperable with electronic health records in hospitals and clinics that are part of the NHIN, will be an important way to achieve the goals of the Recovery Act. Vital and health statistics projects are ‘shovel-ready' and federal contracts already exist with states and other entities that can be used to ensure a speedy implementation startup.
Second. Population-Based Surveys. One of the most critical ways to assess the health of our population and the effectiveness of the healthcare provided is through the national health surveys being implemented by NCHS, AHRQ, and others. Over the past five years we have seen a reduction in the capacity to achieve these important efforts. It is not sufficient to reestablish our previous capacity for population-based surveys. We believe that effective monitoring requires an expansion of these efforts so that adequate information on vulnerable populations and states and localities will be available for:
Evaluating the impact of health reform and the role of health IT on communities, health disparities and the uninsured, for example, through the Health Interview Survey.
Baseline and monitoring data for comparative effectiveness, for example, through healthcare surveys and improved vital records data.
And finally, monitoring impact of EHR adoption on the overall health of the nation and achieving health goals, for example, through the Health Interview Survey, Health and Nutrition Examination Survey, the National Survey on Ambulatory Care and Medical Expenditures Panel Survey.
Without the additional funding from the Recovery Act the nation is at risk of being at the beginning of dismantling the national vital statistics system, which has been the backbone of public health data for decades and having inadequate population-based information.
While funding from the Recovery Act is essential, it should be seen as a down payment to having the capacity to effectively monitor health and healthcare in the nation. NCVHS recommends that stable adequate funding for vital statistics and population-based information collections needs to be assured.
We believe these recommendations are important to building the core infrastructure for promoting and assessing progress in health reform.”
MR. REYNOLDS: Comments. Justine.
DR. CARR: Nice job, very nice job. The only observation I would have is we've been talking about this funding for a long time, and now that we're putting it in this letter shouldn't we have a little bit of background about what we've been observing and what we've been talking about, so that it doesn't look like oh we heard there's money, let's make one of these. It's really been an ongoing deliberation over the last year.
DR. SCANLON: Right. I would agree, I think if it's possible we could talk about it, like we noticed the decline over time and we've been monitoring it.
DR. CARR: Right. We've had discussions, concerns, deliberations over it over the last year.
MR. REYNOLDS: We have Marc Overhage, you had your hand up, right? And then Blackford.
DR. OVERHAGE: I guess my first question or comment is that while this is obviously an important opportunity to take advantage of it, it seems like the Stimulus dollars are one-time dollars, they're capital investment, and we have to somehow I think weave into this how we're going to leverage those as capital investment not as operating sustainable funds, because I don't see how that's a successful story to tell if we just say like you said, a one-time investment and then it goes away and then we don't know what to do with it afterwards.
So I'm not sure exactly what it is we could identify in here, what the work is that is the equivalent of building a bridge, that we can use for the next 30 years.
DR. SCANLON: This I would look to others to partially answer this. My understanding though is there's some opportunity for some operational activities under the Stimulus Bill as well as for capital investment. Because I think what we're trying to do is to say for the short-term there can be Stimulus money used, but the last paragraph to deal with the fact that this is not going to be enough longer-term, that we do need to have the operational funds in sufficient quantity to be able to make this an ongoing activity.
MR. REYNOLDS: Blackford.
DR. MIDDLETON: I just wanted to underscore Marc's comment, which I had as well. And secondarily suggest that it would be useful to try to ballpark what exactly we're asking for in terms of how much and from which source specifically in the funding package we're asking it to come from.
MR. REYNOLDS: Then it's also because AHRQ has some of this money too.
DR. OVERHAGE: Just to finish my thought I guess I was specifically trying to get to, I'm not sure, in the first paragraph on E-Vitals, I think you're suggesting there's something to create here with Stimulus dollars. I think underscoring that there's an activity to create something that will then cost less to operate and run over the long term, and potentially make some of the other activities that we want to carry out less expensive over the long run, making it a kind of rational investment. I don't know if, for me anyway, that didn't come through in this paragraph.
The second one, I find it a lot harder to make that story in the surveys, because I don't know this field, you guys know this in and out, but that's people time, mailing costs. Is there anything there that we can think of or develop that if we spend making an investment now, doing those surveys in the long-term basis, a more sustainable, more achievable goal? I mean this feels very operational.
MR. REYNOLDS: You are talking about creating an infrastructure that would allow better - no, I mean those are the kinds of –
DR. OVERHAGE: If there is such a thing, I think that's easier –
DR. SCANLON: That could be an idea, but I think the point we're trying to make here is that it's very short-sighted to make – not just through the Stimulus Act, but what we're talking about in terms of health reform, and not to be monitoring what the impacts are, because we'll have no idea then how huge amounts are being spent in terms of their effectiveness.
MR. REYNOLDS: Walter.
DR. SUAREZ: You might want to point out too, and it's been said a couple of times, I think the Stimulus package is a very short-term geared two-years at most investment. Then really there's a need for ongoing support. And what we try to do is to emphasize those two points was that the initial investment is for infrastructure, for example, the E-Vitals will be to help states implement this electronic birth and death records system. And we certainly do the link and the importance, I like importance of being able to do that so that it can be linked to the electronic health records systems that are going to be implemented over time. But clearly there is a need and potentially a follow-up with some more information from the Committee or Subcommittee, a need for an ongoing funding, identifying ongoing funding for several of these activities.
MR. REYNOLDS: I know there's a couple of other people, but let me make a couple of things. When you get to the next to last paragraph, the stable, and maybe add “long-term adequate funding.” And then “dismantling” makes me quite nervous; “diminishing” might be a little better.
MR. SCANLON: Or “deteriorating.”
MR. REYNOLDS: Yes, something like that. Deteriorating, yes. So I got Carol and I got Leslie.
MS. MCCALL: In the second paragraph, I agree with the comment to have the capacity to measure the return from the investments in health IT. I would strengthen it personally to something that says to just completely realize the return of that investment. It's not just simply measuring it. That there's something vital that is missing, and it's going to come from this enterprise for vital and health statistics for the 21st century that we talked about this morning. So it's not just continuing the same store, there's going to be not just a difference in degree but a difference in kind of the type of information that's available and what it's going to require to actually extract the insights.
I would want us to strengthen what we say we want it for.
MR. REYNOLDS: Leslie.
DR. FRANCIS: I'm going to put my brain on the side of a critic, and this is just a thought, I'm not sure I can say it in the clearest way. People distinguish between overall health status and the quality of care and access to care that people are getting. Suppose somebody thought that if what we did was billed all the health EHR and NHIN infrastructure maybe we don't need our vital statistics collected in the ordinary way at all, we can just go with the NHIN. I know, shock, horror. Nobody wants to go there, but what I think this letter needs to do so critics won't go there is make it really clear that it's important to collect the traditional kinds of data that we've been collecting, as well as being able to link it. And it wasn't so clear to me that maybe in a couple of places in this letter it just sort of blends the two, rather than saying how important it is to have both.
MR. REYNOLDS: Did we do a letter on the funding last year? We talked about it.
MS. GREENBERG: Maybe a few years ago, I don't know, it would be on the website.
MR. REYNOLDS: The only reason I'm saying that is again it's looking like we're jumping onto something that just happened. If there was anything we've said along, it would be great. In other words, we've been looking at this an noted in our letter of such and such, and oh by the way now that there is funding, because otherwise everybody's running to the light right now. So if there's anything we can pull out from something we've done before that allows us where we've talked about this subject, it shows a good trend, it shows this isn't like a brand new subject, that oh by the way it's been on the back burner, and oh by the way there's now money, so we're not bringing up a new discussion we're just saying fine this now makes it even more important. So I think that would give a good trend line, rather than there's money, hot dog, there we go.
Jim and then Mark.
MR. SCANLON: I think my own advice to the Committee is that you don't need a lot of subtlety and distinctions here. The folks who understand it will know it, and the ones who don't won't matter. The idea here is that at the very time that there will be an increased need for monitoring or evaluating, we can say what it is, but it's the health status of the population and the functioning of the health system, and the Committee's become aware that the resources are at a critical stage. You could say ironically and therefore the Committee urges and recommends that, and you don't have to identify specific parts of the Recovery Act, just say appropriate provisions or so on.
Here you are just trying to get across the point that at the very point when all these systems changes are envisioned the systems we use to monitor, and again, this is not electronic health records, this is population-based data collection, to evaluate those changes and health status and so on, are in jeopardy because of resource constraints. Therefore, the Committee recommends that. I think otherwise you have pretty much all of it here. And we can use it within – it would just be another way of getting another voice in perspective to this issue hopefully.
DR. HORNBROOK: I agree with Jim exactly. I was just going to add in the notion of a transitory phenomenon. If you don't do it now we'll never see it, so you've got to measure it now.
MR. REYNOLDS: Ed.
DR. SONDIK: I was going to make the point that Jim did.
MR. REYNOLDS: Any other comments from anyone?
DR. SONDIK: And I would just add to the question of can we use the one-time money, there is absolutely no question that we can do that. This works around on the population survey side that can be used to actually do surveys, and that provides an information base even if the money went down, that base is a lot more information on minority populations, for example, is there. So that is just practical and really valuable.
The other on the E-Vital side, would be a major down payment for changing the system.
MR. REYNOLDS: With all this discussion and not having rewritten the letter is there anybody on the Committee that has, one, a concern about sending such a letter?
[No response]
MR. REYNOLDS: Two, about the fact that we agreed with the intent that we've seen written down, plus the intent that Jim and others have added to it, along with Ed, and so on?
Leslie?
DR. FRANCIS: I was going to move that we accept the letter subject to wordsmithing tomorrow.
MR. REYNOLDS: That's where I was headed. Okay. I'll stop my comments right here and let that motion ride around. Okay, would there be a second? I see a number of them, Larry. We'll go with Larry.
DR. GREEN: [second]
MR. REYNOLDS: Judy, a comment?
DR. WARREN: From listening to what we've said I think it's more than wordsmithing we're talking about on the letter. If we follow Jim's comments on here.
MR. REYNOLDS: I guess the question is, Jim, with what you've said is the requirement to point out E-Vitals and population-based surveys necessary? I think that was the question. That's kind of what you're saying?
DR. WARREN: I guess I was asking Jim what he's asking for, if you see that as wordsmithing or as do you see it different than what's in this letter.
MR. SCANLON: No. Again, I think there was a suggestion on the table that you provide more detailing in the source of the funding, and I don't think that's necessary for the purposes here. So, no, that's fine. I think it's fine the way it is.
I would probably give one sentence to make the transition between I think the third paragraph, then the resource concerns that we have, therefore the Committee recommends that. As Ed said, that money can be used, obviously you can't depend on it for long-term operational purposes because it won't be there, but it certainly can be used for these kinds of purposes.
MR. REYNOLDS: So, Bill and Don, have you noted that? Ed, did you have a comment?
DR. SONDIK: I was going to say the point that Jim made I thought could actually come maybe at the beginning of the second paragraph, which is to link to put at the beginning of that that there is this increased emphasis on prevention wellness, understanding the health status of the population, and it also could be a point made that this Committee has been continually concerned about that, maybe that could come first. Now, at this point, with this increased emphasis, and even throw in health reform, although the bill I don't believe mentions health reform.
MR. SCANLON: This morning the 2010 budget includes the health reform.
DR. SONDIK: Okay. So I think that is the point where it could be tied together, that these provisional resources to meet the need that is clear, and is expressed by this major initiatives.
MR. REYNOLDS: Is there any other discussion?
[No response]
MR. REYNOLDS: All those in favor of moving the letter forward?
[Aye Responses]
MR. REYNOLDS: Opposed?
[No response]
MR. REYNOLDS: Okay. What I assume is that double-checking is that you guys will clean this up tomorrow, we'll get a copy of it. Then Jim will give us all the right places to send it.
With that, is there any other discussion at today's meeting?
[No response]
MR. REYNOLDS: I would like to note that we are adjourning 30 minutes ahead of time, and I think we got a lot done and a lot to learn.
So thank you very much, and everybody take care.
(Whereupon, the meeting adjourned.)