This transcript is unedited
Hubert H. Humphrey Building Room 705A
200 Independence Avenue, S.W.
Washington, D.C. 20201
Agenda Item:Discussion of action items
DR. COHN: Good morning, everyone. I want 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 the US Department of Health and Human Services on national health information policy. I am Simon Cohn. I am the Associate Executive Director for Health Information Policy for Kaiser Permanente and Chair of the Committee.
I want to welcome the Committee members, HHS staff and others here in person. I, also, want to welcome those listening in on the Internet.
Let us now 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 interests related to any of the issues coming before us today would you so publicly indicate during your introduction.
I want to begin by observing that I have no conflicts of interest.
Marjorie?
MS. GREENBERG: I just got a memo saying that we are not on the Internet, but hopefully we are by now, but this was about 10 minutes ago that it was sent to me.
I am Marjorie Greenberg at the National Center for Health Statistics, CDC and Executive Secretary for the Committee.
DR. WARREN; Judy Warren, University of Kansas, School of Nursing, member of the Committee, and I have no conflicts.
DR. HOUSTON: I am John Houston, University of Pittsburgh Medical Center, member of the Committee. I have no conflicts.
MR. REYNOLDS; Harry Reynolds, Blue Cross, Blue Shield, North Carolina, member of the Committee, no conflicts.
DR.TANG: Paul Tang, Palo Alto Medical Foundation, member of the Committee, no conflicts.
DR. VIGILANTE: Kevin Vigilante, Booz-Allen & Hamilton, member of the Committee, no conflicts.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins Bloomberg School of Public Health, member of the Committee, no conflicts.
MR. LOCALIO: Russell Localio, University of Pennsylvania, School of Medicine, member of the Committee, no conflicts.
MS. MC ANDREW: Sue McAndrew, Office for Civil Rights,Privacy Liaison to the VA Privacy and Confidentiality Subcommittee.
MR. SCANLON: Bill Scanlon, Health Policy R&D, member of the Committee, no conflicts.
MS. MC CALL: Carol McCall, Humana, member of the Committee, no known conflicts.
DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, member of the Committee, no conflicts.
MR. HUNGATE: Bob Hungate, Physician, Patient Partnerships for Health Care, no conflicts.
DR. HUFF: Stan Huff with Intermountain Health Care and the University of Utah, Salt Lake City, member of the Committee and no conflicts on issues that are before the Committee today.
DR. STEINDEL: steve Steindel, Centers for Disease Control and Prevention, liaison to the Committee.
MR. BLAIR: Jeff Blair, Medical Records Institute, member of the Committee. I am not aware of any conflicts.
DR. ROTHSTEIN: Mark Rothstein, University of Louisville, School of Medicine, member of the Committee, no conflicts.
MR. SCANLON: Jim Scanlon, HHS Office of Planning and Evaluation and Executive Staff Director for the full Committee.
MS. BEDFORD: Carol Bedford, American Nurses Association.
DR. FRIEDMAN: Dan Friedman, Population and Public Health Information Services and to quote John Lumpkin I have a teenage daughter. So, I have many conflicts.
(Laughter.)
MR. WEINZIMMER: I am Rob Weinzimmer with the National Center for Health Statistics. I am Acting Executive Secretary of the NCVHS Board of Scientific Counsellors and just to mention that our board has a new liaison with your group. Her name is Irma Ello. She is a new member of our board and she apologizes for not being able to be here today. She wants very much to be at future meetings.
MS. FRANKLIN: Angela Franklin, Blue Cross Blue Shield Association.
DR. HORLICK: Gail Horlick, Centers for Diseases Control and Prevention, staff to the Subcommittee on Privacy and Confidentiality.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC Committee staff.
MS. JENKINS: Wanda Covan Jenkins, NCHS, CDC.
MS. FRIEDMAN: Maria Friedman, Centers for Medicare and Medicaid Services and lead staff to the Subcommittee on Standards and Security.
MS. BURWELL: Audrey Burwell, Office of Minority Health, lead staff to Populations Subcommittee.
DR. HUFF: Good morning, I am John Huff from CDC, NCHS.
DR. COHN: Good morning, everyone, and obviously w are pleased to hear that we will have a new liaison from the Board of Scientific Counsellors.
Now, let us talk about the agenda for minute. We are going to be moving things around just a little bit based on people's departure times and such.
Currently the agenda talks about the first item being a general briefing from Dan Friedman. Instead, what we are going to do is after we talk about the agenda, we are going to move to the action items and we will have as we will discuss in just a minute two action items that we will be taking up and then we will turn this over to Dan Friedman who is I think as you know a former member of the NCVHS and former Chair of the work group on health statistics for the 21st century. He is now a private consultant and a consultant to NCHS and has been looking at national health information infrastructures and electronic health records in other countries and obviously how they potentially contribute to health statistics.
As you will remember he began a conversation with us back in June and this is part two of that conversation. I think we all found it interesting and we all recognized we didn't have enough time to really go through all of the information he had. So, this is a sort of a review of where we were as well as a follow on, and we are very appreciative of having him here to join us.
After that we will probably take a short break and then go into general subcommittee and work group reports to be followed by I think as we have been doing recently a general discussion of Committee functioning and next steps.
I presume we will be adjourning certainly in the early afternoon and not taking a whole lunch break we will take a very short 15-minute break which will happen after Dan Friedman's presentation.
So, having said all that we actually have two action items. The first one is a letter that we discussed yesterday coming from the Subcommittee on Standards and Security. You all have copies of it in front of you. We will ask Harry Reynolds to sort of lead the Committee through the letter and the changes based on our input and then we will consider it as an action item.
After that I will bring up an action item mostly around process for the National Health Information Infrastructure Work Group and we will discuss that after we are done with the letter, but hopefully it will be something that is agreeable to the Committee members.
Harry?
MR. REYNOLDS: Okay, we don't make any changes until paragraph 4. Do you want me to start there or do you want me to start from the whole letter again?
DR. COHN: You can start from paragraph 4.
MR. REYNOLDS; All right, starting with paragraph 4, NCVHS supports the proposed standards for the electronic transmission of attachment information for six types of claims attachments as set forth in the NPRM. We recommend flexibility for adopting new claims attachments transmission and messaging standards and additional types of attachments. In particular the NCVHS recommends the development of a streamlined process for adding new standards and attachment types and for modifying existing standards.
The Committee urges the Department to investigate other ways that adoptions of new standards could be accomplished without the need for the lengthy and cumbersome rule-making process.
On our part we will continue to investigate improvements to the standards adoption.
Any comments or changes?
DR. STEINWACHS: The sentence before last, the adoption of new standards or new versions. I thought I heard you say, "New versions." The Committee urges the Department to investigate other ways that adoption of new versions. Marjorie?
MS. GREENBERG: You got the answer?
DR. STEINWACHS: I thought I heard "standards," and I thought maybe I had the wrong version of the letter.
MR. REYNOLDS; No. I did say versions.
MS. GREENBERG: I remember there was some concern yesterday that the way it is stated might indicate that the Committee actually had reviewed and supported all the technical aspects of these standards but I know that last part was deleted but then there was some concern that that might still imply that, you know, all the details but I guess you decided that wasn't a concern.
MR. REYNOLDS: We discussed this at length and felt that this is where we stand. We are not making any further comment.
MS. GREENBERG: Because you are really supporting the standards for the electronic transmission.
MR. REYNOLDS: That is correct.
MS. GREENBERG: Which doesn't necessarily mean --
MR. REYNOLDS: The technical detail, that is correct and the six types that they selected.
Okay, the next paragraph. We were interested to see that the development of the NPRM was informed by a pilot project with Empire Medicare Services which focused on the human decision variant for sending text or converting data to text.
We believe pilot testing is critical for both the human decision variant and the computer decision variant in which data can be used in automated fashion and read and understood by the computer. As clearinghouses and vendors may not have experience with the loin(?) code sets we believe that pilots should include testing of the full range of loin codes required by the clinical and laboratory attachments along with any other untested claims attachment types.
NCVHS therefore recommends that pilot projects should be funded and conducted using both the computer and human variants for the full suite of claims attachments and attachment types that are proposed for adoption as NPRM as well as the other attachments that are under development including home health, durable medical equipment, periodontal services, and children's preventive health services.
The Committee recommends that the Department partner with private industry in additional pilot projects in the area of claims attachments. Where it said, "Pilot tests" in the last one to keep it consistent it is pilot projects.
Any comments?
DR. HOUSTON: I would propose that in that sentence it was changed. Rather than partner with industry in additional pilot tests to simply say, "Partner with private industry to conduct additional pilot tests."
MR. REYNOLDS: Agreement from the Committee? Okay
The last paragraph, finally the NCVHS recommends that the Department extend the comment period on this NPRM for up to 90 days to allow the industry to take the necessary time to comment on the business and technical implementation issues associated with the standards proposed in this NPRM.
MR. BLAIR: I move that this letter, this recommendation letter be approved.
DR. STEINWACHS: Second.
DR. COHN: Discussion?
So, we have had enough already.
All in favor?
(There was a chorus of ayes.)
DR. COHN: Opposed?
(No response.)
DR. COHN: Abstentions?
(No response.)
DR. COHN: Okay, it passes.
DR. REYNOLDS: The Subcommittee thanks you.
DR. COHN: Thank you very much.
The second action item has to do with process and I want to review with you a proposed process and deliverable coming from the NHII Work Group and ask your permission for this to move forward.
I think as you all know, we passed a personal health record letter and set of recommendations in September. Since that time there has been work under way by the lead staff and others to turn it from a letter into something that is a more attractive, visually attractive and accessible actual report that now will include an executive summary as well as a body of text and some graphics and other things like this, in other words that we did work to develop the national health information infrastructure report and one of the things I have learned over the years is that I think it is valuable to make these things as accessible to the public as possible.
Now, the NHI Work Group reviewed, I mean saw for the first time and began to review this draft. Obviously the intent of the effort is to make sure that A, the recommendations are unchanged as well as the intent of the document and the substance of it are unchanged.
The NHI Work Group is recommending to the Committee that given that that is the intent here and that there are going to be no new recommendations there should be no new nuances to the report itself that the NHI Work Group will review the draft over the next 2 weeks, provide revisions and comments back to the staff who will prepare a document that then would go to the Executive Subcommittee and that we would ask your approval to have the Executive Subcommittee assuming that they agree that there are no changes in content here, that they would approve it and allow it to be printed.
Obviously the view here would be if there were any content changes we would defer that action and bring it back to the full Committee for action in February.
Now, this is obviously not necessarily the normal process for the document we produce, but I wanted to review with everyone and I actually would like a motion that this is okay and also for that matter if there are others of you, and the NHII Work Group and the Executive Subcommittee, effectively most of the members will have had a chance to review it, but if there is anyone else who also wants to review this at the first stage we would obviously be happy to send it out to you to have you review it also. So, anyway if this is an acceptable process I would like to have a motion to that effect.
DR. STEINWACHS: So moved.
DR. VIGILANTE: Second.
DR. COHN: Further discussion on this?
All in favor?
(There was a chorus of ayes.)
DR. COHN: Opposed?
(No response.)
DR. COHN: Abstentions?
(No response.)
DR. COHN: Thank you. Certainly if anyone who is not on either the NHII Work Group or the Executive Subcommittee would like to review the document in the draft form let us know and we will send you a copy as it is marked up right now for comment.
Thank you. Those were the two action items.
Now, with that why don't we ask Dan Friedman to come and join us for part two of the discussion on national health information infrastructure in other countries and impacts on health statistics.
Agenda Item: Health Statistics and the national health information infrastructure - Dr. Dan Friedman
DR. FRIEDMAN: Thank you, Simon. When I was 55 I stripped off ties. I decided that at that point daily conversations between my wife and my two daughters about which tie went with what was just too much for me, and I am turning 60 in a couple of days and I have almost entirely stripped off PowerPoint as well partially because of conversations like the one yesterday where there was almost as much conversation about the format of PowerPoint as the content.
First of all, thank you, Simon for the opportunity to return to the Committee and to continue the discussion that we started in June on the potential contribution of national health information infrastructures, small "n," small "h," small "i," small "i" to health statistics.
The conversation that we had in June and that we will have today relates directly to several of the things that were discussed yesterday. It certainly relates absolutely directly to Dr. Huff's discussion of secondary uses of clinical data with the difference being that it relates to it much more at a societal level than at the level of an individual practice, an individual health care institution or an individual network of institutions.
It relates directly to Mark Wellstein's discussion of the privacy issues and particularly the consent issues and in both the last year when I have been looking at these issues in other countries the nature of consent and the conceptualization of consent is one of the things that I focused on.
Since my June presentation I finished a draft report and I have sent it out to roughly two dozen reviewers in five different countries and I received feedback from roughly eight of those reviewers so far and more will be coming. It is a lengthy report. It is around 140 pages of text so far and around 60 other assorted pages of references, tables, figures and so forth and conducting a serious review which these have been is a real commitment and one that I very much appreciate. Steve Steindel has been one of the reviewers. Many of the reviews are very long and it has been gratifying to me to see people take it so seriously .
Today I am going to do four things and I briefly discussed the presentation with Simon a couple of times and I have urged him to interrupt me at any point and maybe we can have hand signals or stop, really stop, go faster and repeat, but what I am going to do is four things. I am going to recap a little bit of the basics of the project, No. 1. No. 2, I am going to discuss my understanding of the current situation in Australia and New Zealand as it relates to national strategies for shared electronic health records and health statistics. Third, I am going to discuss analytic issues in the relationship between national strategies for shared electronic health records and health statistics.
I presented some of this material before but hopefully I can present it now quickly and in a more structured fashion and then fourth, I am going to discuss possible next steps for the Committee and I am going to mention three possible next steps if there is an interest on the part of the Committee in continuing this kind of work.
In terms of the recap as I said in June, this project is an outgrowth of work several years ago from the NHII Work Group and from the Joint NCVHS-NCHS Data Council Project on Health Statistics for the 21st Century, a direct outgrowth and the work was commissioned by NCHS and I very much appreciated an opportunity to do it.
The overall purpose of the project was to develop a more specific assessment of the potential contribution of national health information infrastructures and again especially shared electronic health records to health statistics.
Somewhat more specifically purposes include describing the current status of national strategies for shared electronic health records as they relate to health statistics in Australia, Canada, England and New Zealand summarizing key themes that have emerged from interviews with roughly 80 informants in those four countries, key things as they relate to national strategies for shared electronic health records and health statistics, summarizing key themes emerging from interviews with around 30 US informants and then delineating major issues.
Terminological issues, let me just again briefly deal with those. It is very essential to realize that the key terms are not self-defining including the very most basic of terms including shared and sharable electronic health records and health statistics and even population health.
The Committee's September 2005 letter report on personal health records, I am just going to quote two or three sentences here, pointed out that there is no uniform definition of personal health record in industry or government and the concept continues to evolve.
It is not possible or even desirable to attempt a unitary definition at this time. However, the Committee believes that it is possible to characterize them by their attributes.
Now, this applies equally as well to electronic health records and I would like your focus here to focus not on the term but on the attributes as I am using them in this report, and what I have used is a term that has something resembling a common general meaning across as many of the countries that I dealt with as possible and one of the reviewers of the report said something very nicely and very helpfully that they were wondering if this was intended as a criticism of current US strategies and it is not at all intended as a criticism. It just happens to be the label that I am using for the attributes that I am dealing with in this report and the attributes are longitudinal, hopefully cradle to grave collection of patient centric identifiable data that is cross provider and cross sector. It is not necessarily the desk-top record that the clinician deals with or enters data into and it is not necessarily a single record kept in a single location.
This is derived -- yes?
DR. COHN: Could you say that one more time?
DR. FRIEDMAN: Sure, longitudinal, hopefully cradle-to-grave collection of patient centric identifiable data that is cross provider and hopefully cross sector,not necessarily the desk-top record and not necessarily data kept in a single location.
This is a definition that has a lot in common with the National Health Service definition in their seminal 1998 document on information for health as well as the ISO Technical Committee 215 definition of integrated care EHRs. It is not the same definition and the same attributes used in the IOM letter report. It is not the same definition used in the July 2004, framework for strategic action. I am sorry to belabor the point but it is important to realize and it is over there, but there is, I think the mag is called Government Health IT and in the latest journal there is an article. Yes, why don't you hold up the article on semantics and EHRs?
Let me go on. While she is looking for the article there was a very nice picture of one of the panelists tomorrow in it.
Health statistics. I am defining health statistics as numerical data that characterize the health of a population and the influences that affect its health. I tend to use it synonymously with population health monitoring and research because the latter tends to be used much more in other countries and population health for the purposes of this report I am defining as the health outcomes of a group of individuals including the distribution of such outcomes with the group and the distribution and level of diseases, functional status and well-being within a group.
It is an interesting article. I don't particularly agree with all that it says, but it is an interesting article.
Let me just mention that the final report which as I said, Steve has been brave enough to read includes seven chapters, some on factors impacting on the development of NHII, one on nation's snapshots of the four countries including locus of national responsibilities for shared EHRs, current status of plans, EHR definition, NHII elements related to shared EHRs, EHR storage, patient and provider participation, patient identification and uses for population health monitoring and research and then I have got a couple of chapters on key themes and then a chapter on analytic issues.
Australia and New Zealand, Simon, do you want me to spend a few minutes on Australia and New Zealand?
DR. COHN: Sure, I think that was part of the reason we invited you. We do want you to remind us a little bit about the other places you reviewed, also.
MS.MC CALL: A quick question. With respect to your working definition of health statistics would you say that it is in common with the 21st century vision in terms of how that is being defined or would you say that there is a material difference?
DR. FRIEDMAN: I think it is the same word for word.
MS.MC CALL: Very good, thank you.
DR. FRIEDMAN: You are welcome. Australia provides really a terrific illustration of the conceptual bureaucratic and organizational changes in this area and if I had been reporting on Australia or New Zealand in June instead of reporting on England and Canada it would have been a very different discussion because in both countries even in the last 6 months there have been some real developments and some real changes.
Now, the developments have been conceptual and bureaucratic rather than in terms of data or information but I mean information about actual relationships but still there have been major changes.
The locus of national responsibilities for national strategies for shared EHRs in Australia has been the Health Connect Program Office within the Federal Department of Health and Aging.
Now, starting in 2002, Health Connect Program Office launched five different very carefully planned pilots relating to national strategies for shared EHRs.
One dealt with preoperative hospital assessment. One dealt with chronic disease management, another with hospital-based children's health information network, a fourth in services in remote areas and finally one with adults with diabetes and their health care providers.
In November 2004, only a year ago the health connect business architecture was public. I don't know if any of you have seen that. It is a very detailed document. It is extremely well written. I found it very clear. Six months later in July 2005 the health connect web site contained a focus that health connect will quote, no longer focus on health connect as a technical solution to address health care reform in Australia, and starting in early 2005 there was, I think of it as a quasi-governmental organization developed called the National E-Health Transition Authority that would be taking over many of Health Connect Program Office's responsibilities. The board consists of the health ministers of the federal government and the states and territories and their charge is to develop a national approach to shared EHRs involving all governments and involving both primary care.
Now, NEHTA, the National E-Health Transitional Authority has adopted essentially a marker-driven approach in which NEHTA will take standards, not make them, supply implementation guidelines, serve as a catalyst and commission missing pieces that are necessary for implementing a national health electronic health record strategy, but they are not going to do any implementation. The initial basic vision laid out a year ago by Health Connect, it is not clear whether or not just a year later that basic vision remains in place or what parts of it remain in place.
According to the Health Connect business architecture EHRs would be defined as a longitudinal collection of health information relating to a single consumer that is stored within the Health Connect system itself and this would be build around a series of event summaries.
Now, NEHTA is, part of the work plan is to develop templates for event summaries. So, that part of it is continuing. However, this was not seen explicitly under Health Connect. The shared EHR was not seen as replacing provider's own clinical records or own clinical information systems.
It is not clear to me what the current working definition of EHRs or shared EHRs is, again, to me. NEHTA has a glossary. It contains multiple alternative definitions of EHRs but as far as I can tell and I could certainly be missing something it doesn't clearly choose one single working definition.
EHR storage, the Health Connect business architecture included storage in two locations. There would be national network of interoperable health record systems that would operate at state, territorial and regional levels and that national network would together constitute as I understand it an EHR repository, a federated model that would allow provider and consumer access and that would essentially be an operational data store. In addition to that there would be a national data store that would maintain archival copies.
Now, again, it is not clear at this point whether that design is going to continue. Patient participation and an important part of the Health Connect pilot was testing out different formulations of consent models. The initial health connect model, the November 2004 model included that patients must provide informed consent before their EHR or other personal information can be collected, accessed, used or disclosed by Health Connect.
It was as far as I could tell a clearly opt in model, purely voluntary and purely voluntary again it seemed to be at the individual health event level, at the diagnosis level, at the visit level, at the level of sharing of data with other providers or with the national data store.
Now, the emphasis with the new national e-health transition authority seems to have changed and their current statement is that they do not support an emphasis on consent to the exclusion of other important privacy requirements and they argue that consent and privacy requirements must be assessed against specific initiatives or proposals.
DR.COHN: Please repeat that?
DR. FRIEDMAN: I am quoting. NEHTA does not support an emphasis on consent to the exclusion of other important privacy requirements and argues that consent and privacy requirements must be assessed against specific initiatives or proposals, unquote.
Now, I have become a little bit of a kremlinologist and I think what they are trying to do is essentially disaggregate the consent issue. My interpretation is that they are trying to essentially disaggregate the consent issues, move away from an all-encompassing discussion and the original conception of consent, my understanding was based on several conversations was very much, was self-consciously an attempt to defuse the possibility of public opposition to shared electronic health records because of privacy issues.
So, I mean it was my understanding was it was really viewed as a trade off.
Simon, you look --
DR. COHN: I guess everybody can ask questions as we go along. I guess what I am sort of hearing and correct me if I am wrong, but it sounds like you are saying for certain use cases or business cases you might have to have full consent but for others I mean one could imagine public health or public health reporting or something like that , that wouldn't be required; is that what you are, is this sort of a model, I mean that you are suggesting?
DR. FRIEDMAN: I am just hypothesizing. I am not suggesting.
DR. COHN: Is that what you think is going on here?
DR. FRIEDMAN: Yes, I mean I think the original model that I saw seemed to be very complicated and one of the people who I spoke to in Australia who is an informatician wrote an article. I think I mentioned it when I was last here. Enrico Coliera write an article in JAMA on how difficult it would be to implement the kind of opt in model that Health Connect had put on the table. I don't know where the national e-health transition authority is going but they seem to be moving away from this maximally flexible model.
DR. TANG: The other question I had is you made the statement about how they opt in in the earlier model and you went on to say you could down to the lab value decide whether to opt in or opt out. Is that your interpretation of this statement or do you know for a fact that they intended the opt in to go that granular?
DR. FRIEDMAN: My interpretation from reading that the original business architecture, it seemed to be very granular, but I think that is no longer in play. I think and I am sorry I can't be more definitive. The documents themselves are often not I mean this is a really good document and I have read a lot of these things but still it is a little bit like you have got to use your imagination, frankly, trying to wonder what they mean and now there is even less there to --
MS.MC CALL: I think this is a good opportunity to understand which I think is what you are trying to share with us here. So, this kind of all opt in all the time, they have obviously veered away from that and it would be helpful to know if they did it primarily for technical reasons or if they did it primarily for public health reasons or if there were some other reasons that they did it primarily for. What obstacle were they seeing out there that they were trying to get around? Obviously they haven't actually implemented anything, but I think that just helps in how we think about it.
DR. FRIEDMAN: In all honesty I don't know. My guess is it was probably largely technical. That is my guess. Patient identification, there is presently no national Health Connect patient identifier in Australia. There is a national health insurance identifier. National identifiers in Australia has been a sensitive issue flowing from the 1980s discussion around national ID cards, something called the Australia card.
Having said this, the national e-health transition authority has said that they consider an individual health care identifier as an essential building block to shared electronic health records and that they believe an architecture will require retention and maintenance of a core set of personal data.
MS.MC CALL: Read the sentence again.
DR. FRIEDMAN: The national e-health transition authority has essentially said t hat they regard a national health identifier as an essential building block and they also have said that they think that the architecture will require the retention of core personal data about every person who uses Australian health care services and at the current time what they are thinking of doing is building off of the national health insurance identifier.
DR. HOUSTON: With regard to the core data, so regardless of whether somebody decides to opt in, opt out, whatever in this environment, regardless if they are a consumer of health services they are going to, some core data is going to end up in the system is what you are saying, regardless or is that an overstatement?
DR. FRIEDMAN: At this point based upon published material that is an overstatement. It may not be an overstatement in 2 weeks or in a month or 6 months.
DR. HOUSTON: Then I misinterpreted what you said. What is the --
DR. FRIEDMAN: Just to give you some sense of what is available on the one hand you have got and this is not uncommon, you know in different places. You have got a business architecture that is 100 or 200 pages long that seems to be obsolescent a year after it was published and you have got two or three paragraph squibs on a web site describing ongoing projects and right now there isn't much in between. So, one can make the statements but you can't go too far beyond.
DR. HOUSTON: What you said was that there were some data elements regardless that were going to end up in it.
DR. FRIEDMAN: What they have said is they envision that core data elements will be necessary on every individual using Australian health care but there is no definition publicly of what those --
DR. HOUSTON: It sounds like somebody could opt out of having their information accessible through this.
DR. FRIEDMAN: At this point the new architecture, I mean I know this is a frustrating conversation. Believe me it is frustrating for me, too, but at this point the new architecture just doesn't say because there isn't a blessed new architecture.
DR. WARREN: To follow up on that when you were talking about this core data that is retained you said the words "of everyone seen in the Australian health care systems." Does that include tourists who are seen for health care?
DR. FRIEDMAN: Again, all I can say and I know this is frustrating, all I can do is report what is said and that was this is what was said. What that means and how it plays out I don't know and I don't want to misinterpret it.
DR. COHN; Okay, Dan, thank you. I think we have a question from Jeff and Kevin and then we will move on.
MR. BLAIR: I don't know whether you want to save your response to this question to later on in what you want to present to us or not but it sounds like the information that you have gathered is not static. It is dynamic. These are changing and they are changing for different reasons. So, I guess maybe what I am looking for is less the specific things that they have agreed or not agreed to in Australia right now but what are the lessons that we could learn by the evolution they are going through?
DR. COHN: Jeff, your comments are very helpful. Kevin?
DR. VIGILANTE: I lived in Australia about a year and one-half ago and had similar frustrating experience trying to do it from my living room. Of course, one of the ways to gauge what people are doing or trying to do in terms of function and vision and size is how much money they are putting into it and a number I kept coming up for Health Connect for various sources is $128 million which seemed really, really, really small to do anything of substance.
Are there new numbers out there for budgetary numbers against what their vision might be that you stumbled across?
DR. FRIEDMAN: Not as far as I know. I thought it was a little bit more than that but I don't think it was a huge amount more than that. There was also a very good report that came out about that same time from the Boston Consulting Group basically criticizing the under investment.
Let me finish up. Let me move on.
DR. COHN: Marjorie just had a comment.
MS. GREENBERG: That is all right. I won't make it.
DR. FRIEDMAN: Let me move from Australia to New Zealand.
DR. COHN: You might want to refer to what Jeff just asked you though now that we are done with the questions. I mean is there anything here that you think is lessons learned or is this more --
DR. FRIEDMAN: Absolutely and in some ways one take on the lessons learned was reflected in the Australians for Health and Welfare, Australia's Health 2004 which is the equivalent of Health US and in there there was a very interesting paragraph and this is a government agency reflecting on the limits of Health Connect for population health research and monitoring and they pointed to three, one, voluntary participation; two, the nature of the health event summaries and three, the lack of harmonized standards for clinical and population health data and I heard this repeated in a variety of conversations that I had with pretty senior people in my line of work in Australia where basically they were saying voluntary participation will be a perhaps insurmountable limit and I will come back to this later. Second, what is in those health event summaries could be an insurmountable barrier and third, not having harmonized standards.
MR. BLAIR: May I ask a question about that? Dan, would you characterize those issues as issues which quote, derail the public commitment to the e-health connect in that country?
DR. FRIEDMAN: No. I think there is still a commitment. I think there is a very real commitment, but my impression is that how -- but I think the nature, the conception of what that commitment should consist of has changed because I think that the Health Connect was doing implementation, albeit indirectly of pilots. I think they wanted to get out of that business and move away from any hint of actually taking responsibility for implementation, I think, but again this is a little bit like reading tea leaves.
In terms of health statistics to the extent that health statistics were seen as related to the shared electronic health record strategy it was going to derive from the national data store which would apparently have contained both identified and de-identified data but data would have been voluntarily submitted to it. It is ont clear at this point whether that national data store is still part of the strategy.
Let me just spend a very few minutes on New Zealand because I realize this is taking a lot of time and New Zealand represents an interesting contrast certainly to England that we discussed last time. The basic vision, in terms of thinking about New Zealand one thing that is important to recognize it is a very wired country. A couple of years ago an international survey indicated that 70 percent of the population, adult population has used the Internet in the last month and that was a couple of years ago. A 2005 survey from the New Zealand College of General Practitioners indicated that almost 100 percent of GPs used electronic patient management software. Ministry of Health estimates that 100 percent of hospitals use electronic patient records.
The scale is totally different and the nature of the government is totally different. It is a nation state and it is a completely different governmental organization. Having said that I think there are some very interesting things that are worth thinking about. The most recent iteration of the national strategy in New Zealand has been in an August 2005 New Zealand health information strategy and consistently over the last 10 years the New Zealand Ministry of Health approach has been very light handed towards the idea of developing a national strategy for shared EHRs and they have adopted what they view as very self-consciously an incremental approach and I am going to read a quote from somebody from the Ministry of Health. Quote, we cannot afford to make large mistakes. So, let us make lots of small ones instead, and they talk about building blocks, getting the basics right and there is also a very integrative approach even from just reading the documents. They start with the population health strategy. From that there is a health systems strategy derived and then from that there is a health information technology strategy derived.
The key documents around population health and the planning documents from the Ministry of Health include mixed in priorities for population health, for health systems and for health information technology. So, these things tend to be viewed as really integrally connected in a way that is not always true in other countries.
Yesterday one of you referred to the quote, Holy Grail of EHRs and in New Zealand that term is used and it is used very disparagingly and the August 2005 report explicitly rejects, quote, the Holy Grail and the Holy Grail interpreted by them as an EHR that holds all medical information about a patient is contributed by every clinician involved in the patient care and is deployed for every patient. That is explicitly rejected and instead what they are emphasizing is the collection and use and retention of patient information, quote, of what they call the coal face of patient care, coal as in c-o-a-l, basically. I think what they are referring to is where the work is done in the mine and where the work is done in the mine is in caring for individual patients. That is the emphasis in the national strategy for EHRs and they have explicitly; this is a quote from this August document, discounted a single national repository for all of an individual's identifiable health information.
They are thinking in terms of three levels of data storage, first of all local systems that support the delivery of personalized care at the coal face by service providers. These would be systems that are owned and operated by individual service providers built for specific purposes and they would obviously contain the most detail about individual provider interactions.
The second form of data storage would be regional systems that consolidate specific clinical data at the regional level and New Zealand has I think it is 24 district health boards for their 4 to 5 million people in the population and typically the regional systems would provide key event summaries that abstract information from the encounters and then third what they refer to as national system anchors which are core systems that provide shared data and consistent processes throughout the health and disability sector and those would be owned and operated by the Ministry of Health.
It includes the National Health Index which is the health identifier and a national medical warning system that also includes information about individuals.
DR. VIGILANTE: A key event summary, that is something that somebody writes and puts in there or is that abstracted from data and just mechanically sorted in some way? Any insight as to what those words mean?
DR. FRIEDMAN: I think it is essentially an abstract of an encounter report. Certainly in Australia they are deriving templates for different types of event summaries, hospital discharges, etc.
DR. VIGILANTE: So, it is not something that somebody writes after the doctor has seen somebody or an abstract or it is --
DR. FRIEDMAN: I believe you are correct but again it doesn't have a single self-defining meaning. So, for example, in the Australian context they acknowledge the possibility of the shared electronic health record being essential and not derived from auto extracts of desk-top medical, of electronic patient records.
MS. MC CALL: I have first and observation and then really more a question to Simon and to Jim. The observation is that they have obviously done a lot of thinking around the concepts, what things are and more importantly or as importantly what they are not. It is not a one size fits all. They reject the silver bullet, what I call the silver bullet, what they call the Holy Grail, but they have also done a lot of thinking about where certain activities need to take place, local, regional, national and have also thought about the governance structure for that and I think all of that is really, really important and so I guess then my question for us and specifically to you and I don't know if you have the answer, in the work being done by AHEC in certification are we anticipating, are we contemplating different types of clinical systems, No 1? No. 2, is have we started to conceptualize what happens at different levels and the governance of those? Is that part of AHEC? Is that part of ONSHIP(?)?
DR. COHN: There are contracts that the Office of the National Coordinator has let to deal with, they are starting formation system certification which is going to be in draft form I believe in January and I was actually thinking about asking the CCHIT to come and brief us in February. I think you are potentially a little more sophisticated than where they are now meaning that they are just starting and I think if you remember what David said yesterday they are looking at very much the functionality to ensure potential interoperability as opposed to slicing and dicing quite to the level I think you had gotten and maybe I will ask Dan a question because I think that this is a key question as to what you are asking us which is how is payment and services organized in New Zealand.
MS. MC CALL: That wasn't the question that I was --
DR. COHN: I know but that is what I am asking because I think that may impact. Is it a National Health System?
MS. MC CALL: Yes. It is a public-private, but it has got a public base and a private layer that is voluntary.
DR. COHN: Like the UK.
MS. MC CALL: Yes.
DR. COHN: Okay, because when I hear these things and I hear our thoughts and all I do realize that there is always this relationship between --
MS. MC CALL: Absolutely, how you pay for a thing.
DR. COHN: Yes, exactly and I know that wasn't your question but it becomes part of the answer, I think, too.
MS. MC CALL: It does,and these concepts, again there is really no need for us to reinvent the wheel if these concepts and findings can in fact find their way to this work that is getting, you know the boat is pulling away from the dock now and there is no reason why they can't be carrying on board the cargo, the findings that are here and they may be relevant. They may not, but they could be considered. So, that could be an important link.
MR. SCANLON: Just quickly I think the US strategy, and it is evolving I think you see, but it is primarily a, the US doesn't have a national health system in the sense that the government runs it. We have some programs like Medicare and others but it is not a VA or a DOD for everyone and I think the strategy you see emerging in the US is a strategy that tries to create some market, tries to use the market for health IT and for health care and tries to rely on that mechanism largely but with the national leadership level in terms of standards, privacy protection research and convening and to some extent it is not a top-down approach. It is going to be getting everybody to move ahead.
It certainly hasn't gotten to the point where there is a, there are concepts but it is not a governance issue just yet or even what exactly the electronic health record would be. I think it is a focus more at this point on functionality, what it could bring in its many manifestations.
So, doing this in Central European nationally or federally run health systems is not necessarily, I mean you learn things from those but it is not what we have in the US and I think that is what we have to be careful of, what will work in the system we do have and I think that is much more complicated.
DR. COHN: And there certainly is lots of burning stuff.
Jeff and then we will get back to what Dan is talking about.
MR. BLAIR; Dan, could you help with a little bit of a level set here? I am trying to make sure that I am interpreting correctly the fact that they have rejected the quote, EHR as a Holy Grail. The EHR systems or what they call an EHR system in New Zealand, my understanding is that that system has been installed over the last 10 to 15 years and that a lot of the architecture for that and the information base on that was what we considered to be, I don't know how to say this. A lot of the things that we want to accomplish with electronic health records in terms of clinical decision support and outcomes management and being able to transition to pay for performance and all of the other really powerful transformative capabilities that an EHR would enable, my understanding is that what they have implemented in New Zealand does not have transformative capability. It is automating processes rather than transforming. Is my understanding correct because if so then that may have caused them to become disenchanted or disappointed with what they could achieve by just automating. Am I on track or is that not the case?
DR. FRIEDMAN: Yes and no. I think you are largely on track, Jeff, in terms of my understanding of what has occurred. I think that this 100 percent penetration of patient management software doesn't necessarily translate into 100 percent electronic patient records or into interoperable electronic patient records.
Having said that there are definitely some, again, my understanding is there are some applications that are used there that are viewed, some of the work of Enigma Publishing, Martin Entwhistle, which is decision support, particularly around CVD and I think diabetes where it is really viewed as decision support as well as collection of data that can be used for population health monitoring in a transparent way to the individual provider. So, yes, I mean I think yes, you are on track but I think there is also a real lesson there in the sense of you know you can have a lot of, you can have really good pipes and automated a lot of electronic data and it doesn't necessarily translate into the kind of payoff for the kind of narrow provincial interests that I have in terms of population health monitoring and control.
Let me finish up in New Zealand and then discuss some analytic issues and some next steps and there are a few things I want to say about New Zealand, one of which is that the national system anchors, the national collection also includes individual data collection streams and individual data collections, mortality, inpatient discharges, cancer registry, etc.
At the present time my understanding is that these are not necessarily auto extracted. You know they may be from some systems. They are not from others. It is a set of individual data collections and New Zealand is going to be continuing with those individual national data collections. There does not seem to be an explicit strategy for moving from the desk-top record to automating those collections. Patient and provider consent, in New Zealand de-identified data can be used without individual consent, with normal approvals. There is a National Health Index number that New Zealand has invested heavily in cleaning up, invested heavily in de-duplicating. That also includes a set of core personal data.
Let me move on to analytic issues and some of these I discussed last time and I am looking at Simon here. I can sort of repeat and do it in a very structured fashion and if I repeat what I am going to discuss it is numerator and denominator issues. I am going to discuss over arching issues and then I am going to discuss what I am calling, quote, success factors and if you want me to do that I will do it and I am going to do it partially by reading it quickly.
As I said, health statistics we are defining as numerical data that characterize the health of the population and influences on the health. In order to do that we need three things. We need numerator data about a health event, condition, disease, well-being, functional health status and so forth. You also need denominator data describing the population in terms of its numbers and basic characteristics and third, we need a basic match between the numerator and the denominator with a known denominator typically defined at a geographic level that either is the total population or representative of the total population in known and quantifiable ways and in terms of the potential contribution of shared electronic health records to health statistics this, the most important concept is really the need for both the numerator and the known denominator data.
As I said I loosely divided the issues into numerator and denominator issues and over arching issues and I have defined I think it is seven numerator and denominator issues.
The first is penetration of shared electronic health records. In order to generate usable numerator data shared electronic health records must either penetrate an entire geographically based population or a truly random subset of that population with known characteristics or a non-random subset of that population with known characteristics. If the shared electronic health records have not penetrated an entirely geographically based population then that subset of the population with shared electronic health records must be linked with a known population denominator with known characteristics and so we need both numerator data and denominator data.
Data quality is a second numerator and denominator issue and if shared electronic health records are to generate numerator and denominator data then those data have to match the same criteria for data quality as our currently met by our current data collections and that includes the kinds of data quality checks, the kind of field checks, the kind of field out of range checks, the kind of consistency checks, etc., that are now used for such data sets as births, cancer registries, hospital discharges as well as the same kind of follow-up that now occurs both electronically as well as via telephone, e-mail, etc.
A third numerator and denominator issue is obviously data completeness and again, the numerator and denominator generated from shared EHRs have to meet the same criteria for completeness as current data population health data collections and the standards of both in terms of denominator completeness as well as in terms of numerator completeness.
Yesterday Dr. Huff talked about maximizing data quality and completeness and I am not going to repeat that unless people really want me to which I doubt.
Patient consent for the entry of data into shared electronic health records, this is really one of probably the most basic issues and if there is patient consent then it is going to affect the quality and the completeness of both numerator and denominator data and there is no getting away from that. I mean it is not that it is, I don't know if it is a show stopper but it really has to be recognized and dealt with.
Now, patient control, patient consent I think can be partially surmountable if it is only over identifiable data and if de-identified data include techniques for tracking unique patients such as encrypted IDs. Having said that one of the things that there seems to be an assumption in some discussions that public health and population health even for health statistics purposes only use de-identified data, it is not true. Identified data are regularly used and are used for very important purposes and they are regularly used in birth certificate studies and regularly used in the cancer registries. Some of it is because we don't have health IDs and so they are used for linkage purposes but some of it is also because there is a need for many studies with follow back, with patient follow back and patient follow back obviously you need to be able to contact the patient and you need to be able to contact the mother and you need to be able to contact the father and you can't do that with the identified data. Unique personal identification, clearly some form of unique personal identification is necessary because it enables a patient centric view of population health, a person centric view and it also enables linkage over time of data from cradle to grave and it also enables linkage across data sets and how that patient identification occurs, I mean it can occur through a master patient index. It can occur through a set of authenticating information or it can occur through a unique health ID.
Finally, a seventh numerator-denominator issue is the need for known denominator characteristics which can be derived if there is total population coverage from shared EHRs, it could be derived matching population characteristics via census. It could be derived from some form of a sample.
Over arching issues, I have identified five, several of which Dr. Huff referred to yesterday. The first over arching issue is the population health is obviously not equivalent to health care. So, there are inherent limits in what share EHRs can produce in terms of population health monitoring and research.
That has both true of what is health as opposed to what is health care. It is also true in terms of the kind of data that we collect such as survey data. Second, structure data obviously EHRs are only going to be useful for health statistics if they include the same variables and code sets or mapped code sets to the data that we have now. Analysis is the third over arching issue and it is really an unknown how EHRs, how a national data repository could be used for analytic purposes. It hasn't been done. Even in England it remains a real question and clearly new methodologies will be necessary. Culture changes, you know, clearly there need to be culture changes by the clinician in terms of entering data for secondary purposes. It is not their job.
Culture changes by public health and also clearly culture changes by the population in terms of consent issues, and finally a fifth over arching issue and one that I really have not defined very well is the market issues and clearly the market issues around collecting data for secondary purposes and England and Canada, Australia, all define population health and public health as a secondary purpose and the ISO defines it as a secondary use. Can we leave that? Will the market respond to secondary uses and if it is a market strategy how can secondary uses be built into that strategy?
If you would like I can move spend a few minutes just listing out what I have called enabling threshold and tipping factors or I can move on to some ideas where NCVHS might go.
DR. COHN: Give us the tipping factors.
DR. FRIEDMAN: These are really sort of meta level and I understand that. They are not in any way and again one of the reviewers saw some of this discussion as recommendations and they are not intended. I mean I tried to separate out analysis from advocacy which in this area I think can be quite difficult because there is so much advocacy going on right now. Obviously based upon four countries and four countries' experiences with very little implementation identifying success factors is more, it is in some ways kind of silly because it is totally speculative. We don't have an information base. We don't have a database at this point and we probably won't for many years in terms of what works and what doesn't work.
Having said that I will proceed. Enabling factors I am defining as factors that --
DR. COHN: Dan, just to break in, so this is your opinion in other words?
DR. FRIEDMAN: Yes, absolutely. This is purely speculative. Enabling factors I define as those that increase the likelihood of successful use of shared EHRs for population health monitoring and research and health system enabling factors and health information system enabling factors, greater funding of the health care system by the government, a lower percentage of uninsured individuals, higher ratio of GPs to specialists, greater central coordination of the health system and greater control of the health care market by the government, health information system enabling factors, closer relationship between the provision of health care information from data sources and the conduct of population health monitoring and second clinician incentives for adopting and using shared EHRs especially for secondary purposes.
MS. GREENBERG: Could you repeat the first one?
DR. FRIEDMAN: Health system enabling factors?
MS. GREENBERG: Health IT.
DR. FRIEDMAN: Oh, health IT, closer relations, the first one really focuses on is there a relationship between the provision of data from the health care system for administrative purposes, for health insurance purposes, etc., and population health monitoring. It is basically what was being discussed yesterday in terms of one data collection, many uses and does that occur or not.
MR. BLAIR: Do we have these in our handout by any chance?
DR. FRIEDMAN: No.
MS. GREENBERG: It will be in the transcript.
MR. BLAIR: Is it possible for us to get a copy?
DR. FRIEDMAN: Surely.
MR. BLAIR: Of the enabling and the tipping?
DR. FRIEDMAN: Absolutely. Threshold factors, I define threshold factors as those without which successful use of shared electronic health records for population health monitoring and research may fail, now very carefully caged language business threshold factors explicit inclusion of population health monitoring and research as an integral component of the national strategy for shared EHRs and the national mission for shared EHRs in terms of goals, plans and pilot test implementation. System threshold factors, the national strategy for shared EHRs must include integrated electronic provision of data and integrated data flows from diverse health care sources for clinical reimbursement, administrative and population health monitoring purposes, No. 2, unique patient identification either through patient ID or some other form of unique and stable identification algorithms. Third, I am going to skip that. Okay, tipping factors which ultimately maximize the potential for successful use of shared EHRs for population health monitoring and research, existence of a single predominant payer, salary-based reimbursement for clinicians and mandated use of shared EHRs with mandated standards.
Next steps for NCVHS, you know, I don't know if there is interest on the part of the Committee, I am obviously no longer a member of the Committee, in this kind of sort of more meta level analysis. I do think that there are three kinds of work that would be very helpful to see whether it is on the part of the Committee or somebody else. One is essentially continuing to name the problem and drilling down conceptually and analytically and drilling down realistically and honestly, I mean even classifying and developing a taxonomy of the kinds of issues that are involved.
Now,the problem that I addressed in the scheme of things, a very small and very modest project, was one, you know, I tried to name one particular problem. There are other problems such as the relationship of the desk top electronic record to generating population health monitoring and research data that were not addressed and that need to be named, that need to be classified, that need to be thought through. A second next step I think is trying to develop and this is obvious, a policy and a business case for maximizing the potential of shared EHRs for population health monitoring and research and I don't think that we should assume, well, that needs to go beyond infectious diseases. It needs to go beyond syndromic surveillance. It needs to go beyond bioterrorism and I don't think that it should assume positive answers and I think it really needs to try to separate out the advocacy from the analytic elements which again I think in this area right now given the amount of attention being focused on it and the amount of money is very difficult to do and may be quite unpopular.
Third, building a research agenda. I see research agenda as including four different elements, first of all identifying current gaps in research and pilots and certainly in terms of the research. It is more what exists rather than what doesn't exist because there is so little empirical work that has been done in this area. It is really almost nothing.
Second, ensuring that existing pilots and future pilots include a phased and thoughtful plan for testing out elements of using shared electronic health records for population health monitoring and research and personally I think that is something that would be extremely valuable and it is a little bit like a health impact assessment. Well, what does this pilot tell us about population health monitoring research and what would a set of pilots look like that try to focus on these issues.
Third, as was briefly discussed yesterday stimulating research into public support for building EHRs and using them for population health monitoring and control. There is certainly some work that has been done. I think Markell did some work, and the California Health Care Foundation has done some work recently that was very interesting, very, very interesting particularly in terms of educational and racial differences in support but those only go so far and I think it would be really helpful to build a more complete plan for that kind of public health public opinion research and then finally you know I think it is really important to try to learn from the experiences of other countries in terms of what they are actually doing, what has actually been implemented which is not always easy to find out, what the debates consist of and the debates are really interesting and really instructive and what is going on with implementation on an ongoing basis.
Thank you.
Simon?
DR. COHN: Hear, hear.
(Applause.)
DR. COHN: Dan, we don't normally clap for people. This was very good. I mean it is sort of a fascinating set of observations and issues. Of course I am reminded that I felt that way when I read your health statistics and the 21st century also though that was a little more upbeat than what you presented here.
(Laughter.)
DR. COHN: I guess when you peel the onion you peel the onion. I guess I would ask other people for views and all this stuff. I think that certainly as I am listening to all this especially having just been through a subcommittee meeting that started at 5 a.m., Pacific time this morning I am reminded that there is really actually a lot outside of the United States that might help us understand better or some of the issues that we have and I think your last point especially about the issues of monitoring what is happening in other countries is really a critical issue. I mean in some ways there are other pilots that we are talking about, knowing that of course there are different payment systems and everything else but I think there is much to be reminded of and learned and you are reminding us that this is not static out there that they,like the United States are searching for sort of the right balance in how this all is. So, I just want to remind everybody that this really is actually part of our charge working sort of on that international level to understand what is happening in other countries with HIP. So, I just wanted to make that initial comment.
DR. FRIEDMAN: Could I just respond to one comment you made which is I don't -- it is such a political area. I don't intend to be discouraging or discouraging about the prospects but I do think that there are some really basic questions that have to be addressed in terms of how you move from an implementation in a practice, in a hospital, in a network, in a part of a state to the broader issues, the broader societal issues about getting data on population health and I think it is important to really try to name those issues and be honest about them.
DR. COHN: Sure, and I didn't mean this in any way other than sobering but I thought the previous report was upbeat.
Jeff and then Carol/
MR. BLAIR: Thank you, Dan, a lot to think about. Getting to the Australian example here we had a country that had apparently worked for many,many years thoughtfully to try to pull together a comprehensive strategy to come up with some form of a national health information infrastructure and from what you were indicating it looked as if they had really done a good job and then you indicated that 6 to 9 months later it appeared as if the commitment to that documented strategy was modified. From the way you described it it was like it was decentralized and the word "transition" was focused on. In other words, it seemed as if there was a mind set from here is the architecture for what we are going to create to a change to say, "Here is what our transition will be."
So, my question is was this principally who is going to have control; was it a political and control set of concerns that drove this change or was it that there was a lack of confidence in the design, the technical design and clinical design or was it both and if it was both which way does it lead? I am trying to think in terms of again what lessons can we learn from the transition that they have gone through.
DR. FRIEDMAN: Jeff, those are terrific questions and I really don't know the answers and frankly calling and talking it is really hard to get people to, especially over the phone to air some of these issues especially as they are going on.
I think for me one of the things that in particular what has happened in Australia has reminded me of is the extent to which the architectural solutions are political solutions as well and they make very basic statements about the nature of the health system, the nature of governmental control, central governmental control and the nature of sharing that control both with private industry in the market as well as with individual governmental units such as Australian states and territories.
DR. COHN: Thanks for trying to answer that one. I can imagine how difficult it is to get to the bottom of some of these things.
Carol, you are next.
MS. MC CALL: A couple of areas, first an observation and then maybe an opportunity, the observation around what may have been framed as sobering, just the fact that as it rolls out whatever it is that we do in the specifics of what we do, it will not be everywhere all the time, and it is going to be a very uneven landscape in terms of what is there and that that fact materially impacts and for a while severely cripples any sort of population health or analytics that you want to do because your numerators and denominators are suffering from different things, among other things. Because of that the opportunity could be this, that there may be ways to kind of amplify or expedite maybe going by area; so, it is kind of like this military strategy of we are going to take an area by storm because otherwise if we just allow whatever its natural progression is going to be without really trying to course correct who knows when we will reach a tipping point with respect to some of the secondary gains and tertiary gains that we think we can have in whatever the domain and so I think that that is useful to think about the fact that the reality of it is not flip a switch may lead to some recommendations around the regional or some things that I think John Hollom could talk to us about. So, that is opportunity No.1.
No. 2, with respect to analytics, nobody has ever dealt with this kind of data before, just in terms of its size and scope. It will be highly dimensioned. Conditional statistical methodologies will break down. They don't work necessarily in a very highly dimensioned domain. There are techniques that are out there and yet they are not anything that are probably used today within traditional health statistics. So, that both becomes an issue and an opportunity, one that we are not going to have to deal with for a while because there is not a lot coming out of these taps, because we are still running pipes; however, there are areas that are doing work in dealing with both true high volume, real big data and highly dimensioned data and they work on different kinds of problems and it could be valuable now to learn what that type of thing takes so that as architectures roll out you can say, "Look, there are different ways to approach this," and so that could be another interesting thing to call on and I can send this out to the members of the Committee. There is a model that may be worthwhile to pursue, and the CIA actually pursued this if people are familiar with Incutel(?). The CIA actually brought up a venture capital arm and it said, "Look, I need to know how to do certain things but I don't have the ability to go hire the people with the skills and compete with essentially the folks who do pull them in which is Silicon Valley. So, instead of trying to hire all that talent and learning how to do those things, I am actually going to throw up a company that invites people in to solve my problems. The asset that I have is the problems that I have and allow these people then to commercialize whatever technique they find wherever they can, not a problem," and so there may be some interesting business models again in the public-private partnership that help us really launch forward to solve some problems that we haven't even really experienced yet because we have never had this much data before.
DR. FRIEDMAN: Just in response to one point there, it is interesting to me that you say that. In Canada the responsible national organization which again isn't to implement it but still is kind of a health enfilade which is a crown corporation, essentially depending how you look at it is either quasi-government or private and the national e-health transition authority in Australia is also a private company. It is quasi-governmental, but it is a private company.
DR. COHN: Carol, maybe to turn this around a little bit only because I am listening to you I really remind everyone that there is actually a lot of information out there already. It may not be electronic health record information but Medicare databases and all other sorts of things and the question is not what do you do with EHR. It is what you do with the EHR with everything else sort of all put together which is a very interesting issue.
The other piece of course is that there is also a lot of large organizations that actually do have experience with electronic health records, the Veterans Administration and we could certainly ask them to come in and talk to us about how they deal with research and I suspect Paul even though Paul's organization is not quite as big as the VA is beginning to have to consider that issue of how exactly you approach it.
I know my organization as we roll out electronic health records and so I think there is, rather than us having to say, "Well, geez, we don't know anything and we have to start from scratch," it is sort of the usual American way that we really need to look around and identify sort of the bright spots and sort of the sweet spots out there.
MS. MC CALL: Who is setting the pace and what do they know?
DR. COHN: Yes. So, it is just another way of looking at some of the issues but I think you do bring up certainly a good issue around all of that. It is going to be an interesting mixed environment for a while probably. I know that we have got 8 years left in the President's 10-year plan but it may extend a little beyond that. I didn't mean to try to answer your question here but I get very engaged with your questions particularly.
Paul Tang?
DR. TANG: Actually that may be a good segue. I want to pick up on the numerator-denominator question you talked about and I may have mentioned this last time because you recapitulated a little bit of that numerator-denominator problem.
One of my concerns actually is that we are reaching a tipping point in this movement towards standardized reporting or pay for performance but I am concerned about the direction of the measurement.
So, there was this DOQ project, Doctor's Office Quality and the assumption was hey, some people are already starting to implement EHRs or clinical systems. Why don't we try to get these clinical measures out of these clinical systems which sounded very exciting until they handed me the claims-based measures and definition. So, what we ended up doing is extracting claims-based measures out of our clinical system or let us say it a little bit differently. We extracted administrative data from our clinical system. Now, what was alarming about that is the denominator, we have a clinical system. We have met this in trying to achieve a high accuracy of our problem in Medlist(?). We can actually reliably using both standards identify denominators.
Well, the claims-based method of identifying the denominator missed 30 percent of our coronary artery disease patients. It missed 25 percent of our diabetics. Why? Because they had these highly developed ways of sort of trying to get close to a clinical definition based only on administrative data that are largely submitted by administrative people extracting charts. So, the bottom line is that not only did we miss populations we were trying to measure our performance on but you get different numbers. So, because of the biases, interestingly the biases that were introduced by the ways that you designed your administratively determined denominator you actually created a higher performance than our clinical measures that we do very carefully ourselves.
The reason for that is the bias is you have to have two encountered diagnoses on your claims for this condition under measure, let us say diabetes. What happens is you selectively got the people who you are engaged with the most on both sides.
So, for example, Marma Hinglonny once he measured we are at 97 percent. That is totally ridiculous. Nobody can do that and we don't when you consider a real diabetic population denominator. So, the direction I am concerned about is we have got this momentum, this tipping point going forward on performance measures and I am worried that we are measuring the wrong thing. This is a huge opportunity cost, and we are asking people to implement these symptoms to measure and reward them based on administrative data, a major thing and so the implication for NCVHS is it is possible that this is an issue we should take up and it is health statistics; it is clinical systems; it is the goal that we are after. Let us make sure that we are not going to measure the wrong goal after all this.
DR. COHN: Paul, as you mentioned this I think I am glad to hear that you joined the Work Group on Quality.
(Applause.)
DR. COHN: And, Paul, I think we all agree with many of your statements. Obviously I did not in any way try to explain some of the strategies around pay for performance except I think there have been decisions made to reward pay for performance in a more neutral fashion not requiring information technology to support it and I think that is sort of what you are seeing but I do think it is a conversation that the Work Group on Quality needs to have in terms of having the discussion with people engaged in that direction.
Bill, you probably know a lot about this from Medpath(?).
DR. W. SCANLON: I mean I think that there has been a decision made but it is more at the level of the concept of paying for performance not decisions made in terms of exactly how we should do it and if we are stuck in a world where we only can use administrative data there is a question of this may be not a precise measure of care of diabetics but on a relative basis is it an adequate measure and I could argue it is not in this case, but in other cases there may be something that is not a precise measure of a concept that you would like to be able to capture but it is good on a relative basis for a pay-for-performance system. It is the kind of issue that needs to be resolved because to say that you are behind pay for performance from a conceptual level is no good if it ends up creating averse incentives and inappropriate payments. We can have a backlash from it just the way we have had backlashes in the past from ill-conceived ideas.
MS. MC CALL: Just to extend that a little bit farther I think that this does need to go deeply into the design principles for P for P and there are lots of different ways it could be handled. Bill actually just articulated at least one which is if it is not good enough to get you closer then leave it out.
The other is to say that if it is in because it gets you closer but the measure itself isn't what you would really want it to be then why not pay differentially, for example, to physicians that actually have taken the time to do it right and say, "Look, I will give you credit because you jumped over a low bar, but I am going to give the most credit to those physicians who take the time to do it right," and design that in so that it actually pulls EHRs toward, so, you know, that is another idea but it needs to get baked in.
DR. COHN: Well said. Russ, how about if I let you comment?
MR. LOCALIO: Dan, I wanted to thank you again for coming. I just want to say that I view your comments as encouraging and positive and here is the reason. I think people's expectations have to be reasonable and if they are not reasonable after it goes into putting all of your eggs in a single basket and to the exclusion of other baskets, for example, I would not like to see Ed Sondik who is not sitting next to me, I would not like to see his valuable enterprise disappear because somebody said that we don't need that anymore. We need to just press the button and it will all come to pass and so I think I am just encouraged and I would just want to say that I also think we need to follow what is going on in other countries even though they are different because we may learn something.
DR. COHN: Russ, I am always impressed at how we see things differently often but a very good comment.
Bob Hungate?
MR. HUNGATE: I wanted to pick up and thank Paul for articulating what I think is the central challenge to the Quality Work Group but I wanted to take that as a segue into coming back to Dan and asking a question in a little different direction. The US enjoys the highest level of investment in health care of any other geography. This has led to a demand for accountability, pay for performance. The pressures that have evolved in this economy because of that high cost I think are different than exist in New Zealand, the UK, Australia.
Now, maybe I have misjudged what is going on but I think it is different and so I think the structure of change will be quite different in this economy because of that fact and I think it affects, that somehow we have to, if we are to be successful in improving population health measures from the tensions that exist we have got to get the population health issues linked into the pay for performance because that is the forcing function that is making it move. At least that is my perception. You look puzzled.
We had a little discussion at the Population Subcommittee about the evolving use of registries and it seems to me that that may be one of the core interface functions between the clinical information which goes into the registry and the tools which might be used to both assess population health and guide individual judgments, that it might be the better place to generate measures for pay for performance and that is a different piece than appears I think in the other system.
Now, am I missing the boat or is there something there?
DR. FRIEDMAN: My impression and I am not expert is that England's National Health Service, I mean there is a lot of physician level measurement that goes on and it is part of the new GP contract and as a matter of fact there are so many different physician level measurement systems that it is really confusing figuring out what each of them is supposed to do. One of the things that has been interesting to me is that the secondary use service that I discussed in June and I am sure is still is uppermost on your minds in the National Health Service it is not clear to what extent those individual physician-level measurement systems are going to be derived from the secondary use service and that is the goal and to what extent they are going to be derived from the electronic patient record, to what extent they are going to be derived from physicians at the individual practice level culling the electronic patient record and sending in aggregated data.
That is a long way of saying I think that there are some interesting things to be learned there as well.
DR. COHN: I would like to finish off to allow people a break. Do you have a comment?
MR. J. SCANLON: Just quickly, again you have to separate the cheer leading from the reality and this has come up before where we thought we wouldn't need public health measures and monitoring systems or surveys because everything would emerge from an electronic health record. That idea I hope the Committee will at least understand that that is probably not going to be the case. Many people don't even interact with the health system for most of their lives. There are still public health issues. In fact, surveys and other kinds of monitoring systems for public health were developed because many people never interact with the medical care system. So, again, I hope this theme that yes, we use it for all it is worth to help the public health but the idea that it is somehow going to replace, not that linking and new kinds of research and public health measures may not be available but the idea that one will replace the other and not only have I heard it by our budget folks, I have heard it by former members of this Committee in fact. I hope everyone has more sophisticated understanding than that.
DR. FRIEDMAN: May I just respond? In Australia for example, that has been a real fear and one of the things that the person who was then their senior governmental person in this area said to me is he had two goals with Health Connect. This was several months ago and the first was making sure that they don't lose, they meaning what they have and the second goal being standards, standards, standards, harmonizing standards, but there was a real fear and a concern. I did hear this especially in Australia about people saying, "Okay, we will take another 100 million away from health statistics. We are going to have shared EHRs."
DR. COHN: I think that the reality generally is that almost for anything when you put these systems in there is a desire to get a return on the investment and people will try to find it almost everywhere on this one.
Now, I guess I am going to hope that we can take about a 10-minute break and thank you so much and obviously the Population Subcommittee is going to be talking about populations and the NHII is one of their issues for next year, and I think a lot of what you said sort of plays into that.
I know NHII will be having a conference call in January. I think maybe the question is, I mean I think you said many very important things. I think the central issue here is clearly at least in my view keeping our eye on the international environment that you have reminded us about. There is a lot of value but it is also that I think the realistic appraisal you know what can be done versus needs augmentation in relationship to public health and how do we bring everything together recognizing as I commented earlier we have lots of data streams. I mean it isn't for lack of data that we live in the United States on all this stuff and the question is how do we put it together recognizing the unique importance of each of the streams going forward.
So, I mean we will be calling on you and talking to you as we move forward on that.
So, do you want to take a 10-minute break at this point and then we will go in for our last session?
(Thereupon, at 12:05 p.m., a recess was taken for a working lunch until 12:18 p.m., the same day.)
Agenda Item: Committee Discussion - Dr. Cohn
DR. COHN: What we will do first of all is just basically go around and get reports from the subcommittees and work groups. Then we will begin to talk about obviously issues around the overall meeting planning and how the meeting went, what worked well, what didn't and then finally talk about possible agenda items for the February meeting.
Agenda Item: Reports from Subcommittees and Work Groups
So, why don't we get started here. Why don't we start out with the Subcommittee on Standards and Security. Jeff or Harry, are you going to --
Agenda Item: Subcommittee on Standards and Security - Mr. Blair and Mr. Reynolds
MR.REYNOLDS: Yes, I have it. With Jeff's permission I have it again. We met yesterday and obviously we thank the full Committee for approving our letter today. That was a big one we had. We have a December hearing coming up where we are going to focus on the return on finalizing our hearings on the return on investment for HIPAA and we are going to hear from Wheaty(?) and possibly some other testifiers.
We are going to have an update kind of on the whole gamut of e-prescribing. We are going to hear again from NCPDP and hear about some of the pilot awards and some of those things and I will say that NCPDP has made significant progress in taking, you know, we talk about the free enterprise world. They have really taken as an SDO, they have really taken some of the recommendations from the group and are turning those into standards probably at a much more rapid pace than they may have been done previously and that is really helpful in aligning to the e-prescribing world.
We are going to hear an update on any items related to us from ONC(?) and it will be right after one of the AHEC meetings and we will hear another presentation on our continuing road. We have two future areas of interest we are really focusing on. One you heard Stan cover yesterday on secondary uses of clinical data and Judy has an assignment for us that she has taken as matching records to patients. So, we will hear some more on that and then to show our flexibility one of the things that came up yesterday and in our letter we just sent was this whole idea of how do we simplify versioning and we will have a half a day or of our day and one-half, half of it will be focused on having people come in and present on how that might, what kind of approach that might be. So, based on our letter that we sent to the Secretary saying that we would continue to look at that we will have some of those types of presentations as we go forward.
So, our next deliverables we would assume we would have some kind of an ROI letter at some point and then we will be focusing on some kind of a letter at some point for secondary uses of data and matching patient records. So, that would be our input.
DR. COHN: Would the ROI letter be an action item for February or --
MR. REYNOLDS: We will have to see. That may be what it turns out to be because we are going to hear our final testimony. We already had kind of drafted our earlier testimony into four or five areas of situations. So, we will see if we can't start drafting something and have it for the summer meeting to start looking at.
DR. COHN: That sounds great.
Paul, did you have a comment?
DR. TANG: Yes. There is obviously a privacy aspect for both the secondary use and the matching and thankfully the Chair is also a member of the Privacy Committee.
DR. COHN: Actually also the Subcommittee on Standards and Security has identified their 2006 meeting schedule. That will hopefully be posted on the web in the near future.
Next one, Subcommittee on Populations, Russ, I think you are going to be --
Agenda Item: Subcommittee on Populations - Mr. Localio
MR. LOCALIO: Don has asked me to report on our work to develop the committee agenda for the coming year and we have two items that we are pursuing. The first is the disaster response capacity of local community health systems to respond to various disasters such as weather-related disasters that we have experienced recently. It does not appear that data are available to assess the adequacy of health care capacity to respond to the surge in demand that these disasters affect. It is not clear that all the involved agencies are using common metrics when they talk about capacity and it doesn't appear that this population capacity to meet these surges in demands are translated into institutional capacity in communities and regions.
So, the next step is to have a conference call in December and then to decide on a hearing in February and March on the questions that we might want to pursue.
The second agenda item is barriers to linkage of health data. There are some success stories such as NCI and Medicare data linkages. That is the CO(?) Medicare data sets for example but we want to develop a hearing in the spring 2006 to explore barriers and opportunities for data linkages that could strengthen the measurement of the following types of items: Socioeconomic status or socioeconomic position at the individual level. That could include income, as well as education and neighborhood SES. So, it is SES at two levels, individual and neighborhood levels, measures of disability and then measures of utilization and cost and again our next steps in this conference call in December we are going to discuss specific questions to be addressed and ask how data linkages might help evaluate health outcomes of persons not only overall but persons affected by particular disasters.
Any questions?
DR. COHN: Firstly, Don isn't here for us to sort of comment and discuss with him. I think he had to teach as I understand. I was actually very interested in some of the comments that Dan Friedman was making and I am actually wondering and I don't know whether this is an additional area of investigation or discussion by the Population Subcommittee but certainly the sort of basic issue relating to the fact that you know what electronic health records and the NHI can do versus what it doesn't do with population health is I think a, I mean from my view it is probably not a 5-year project but may be a relatively constrained issue that may be worthy of some sort of communication to the Secretary.
Now, as I say that it may be more than I think it is but it might be something that you all might want to talk about and see if indeed that is an issue that might be of some value.
MR. LOCALIO: This was discussed this morning.
MS. GREENBERG: In the joint meeting and it is somewhat more in the purview I think of the Quality Work Group but they are working together on it.
DR. COHN: Okay. I guess I am jumping the gun here.
Agenda Item:Workgroup on Quality - Mr. Hungate
MS. MC CALL: Actually I think it was discussed this morning. There are elements that are going to be the purview of probably more in the line of quality. There will be other elements that are clearly within populations and we referenced and I will mention it again for everyone here, we made a lot of reference to a frame or a model that is actually figure 2 in the 21st century vision. So, you an go back and refer to it and it does a wonderful job of laying out a model that helps you see that there are certain things that will obviously come from an EHR or that type of individual rolled up environment and then there will be things from a population health standpoint that cannot or most likely will not ever come from an EHR and I think that is what Jim Scanlon was talking about a little bit earlier and some of those types of things have to do with, and they are very well framed in this document, the 21st century document and some of them had to do with race, ethnicity, socioeconomic status. There are some things also related to the topic of kind of disaster issues and they have to do with the system itself and its capacity and can you articulate what you have and how much you have of a thing with respect to health services. There are a number of other dimensions in there as well and so I think that part of it has been written and it may need to be taken to the next step to essentially extend that concept that was really well laid out in the 21st century vision and say now that we know more about the EHR it may be time to begin to articulate what it will do and what it won't do and where it contributes and also where that contribution stops because otherwise I think we tend to think of it as the Holy Grail, a term used this morning and we will forget that there are some other things that must be done.
So, that was essentially the nature of the discussion and some things will need to remain within population.
DR. COHN: Thank you. As you were talking I felt we shifted to the other report. Mark, I apologize.
MR. HUNGATE: This is a privacy yield to the quality for the moment. Friday's hearing is really set up to try to help focus this discussion and topic. The morning is set up with Dan Friedman there as a reactor to the panel which includes John Lumpkin.
MS. GREENBERG: Just to prove that members of the Committee never really retire.
MR. HUNGATE: You should know that these things are ongoing and David Lansky, David Kitty from Academy of American Family Practice and I can't remember the name of the person --
MS. GREENBERG: Dr. Velagra.
MR. HUNGATE: -- that I think you identified originally or Gail Horlich.
MS. GREENBERG: I think Gail Horlich identified.
MR. HUNGATE: And I thank you all for that assistance but the point there is as we think about quality think about it in both the population and individual sense and think about the limitations that occur in various places.
So, I think we have got the right body of content for discussion there to start from that point because the afternoon then has EHR people including Stan Huff picking up on his secondary uses description here which is perfectly timed for our agenda and we thank Stan and his insecurity for your good judgment in content selection and anticipation and timing. It is incredible. I tell you it is just perfect.
MS. GREENBERG: And for joining the Quality Work Group
DR. HINGSON: We appreciate it. We will take all the help we can get and the vice president for R&D from Seamons(?) is going to join that discussion and the chief medical officer from the VA and so I think we have got enough perspectives here that we can probably do a reasonable job of maybe thinking about a letter that gets in that direction but it may be premature to expect that until after we see what we end up with in the session.
I want to note because somehow I have been negligent in getting Carol McCall's name listed and Mr. Hungate and Ms McCall as Co-Chairs of the Quality Work Group. I want to make sure everybody understands that we are in fact operating as Co-Chairs.
DR. COHN: She is actually the Vice Chair.
MR. HUNGATE: Is it important that it be Vice Chair as opposed to Co-Chair?
MS. MC CALL: In the event you are not able to fulfill your duties as first runner up, you know.
MR. HUNGATE: This afternoon we are meeting to talk about the rest of the work plan for the next year. In other words tomorrow is pretty well set for what we are going to do but what we are going to do after that is still subject to a great deal of discussion. We are I think in a heavy learning mode about a lot of things that we wish we knew more about. We have a highly articulate and not always fully agreeing group and so getting a pattern that works well for us synergistically is still a little bit of a challenge but we have allowed 3 hours of afternoon discussion. Stan is again going to join us which we appreciate and we would welcome anyone else who can stand more time in this room to talk about this.
The secondary uses of information is critical to the quality agenda and meshing that effectively with the standards and security work, getting it appropriately followed on this agenda with the full Committee I think is part of our challenge in managing this content from the quality standpoint and so we are going to try to link back and forth as well as we can and try to be as open in inviting others to participate and everybody should understand that is the mode in which we are operating.
MS. MC CALL: I think to extend that idea the links between the various subcommittees and work efforts you had mentioned at the opening of yesterday's session that t here may be an opportunity for some strategic planning. This could be one of those places where if we specifically called out those important topics that essentially crossed some of the work streams for different reasons, for example, standards will have, there is a huge impact on harmonizing of taxonomies and quality in the work group and what the ultimate goal is and so if there were a recognition of those topics and how they cross and then if the agendas that we set out for hearings and all of that were made to essentially synergize as opposed to either duplicate or miss an opportunity that I think would be valuable to find some of those overlaps so that is just for future reference.
DR. COHN: A very good comment. I guess a point well taken also.
Comments or questions? It looks like you are going to have quite an exciting set of hearings, I guess this afternoon a meeting and then tomorrow.
MR. HUNGATE: This afternoon just a meeting of the work group and tomorrow is the hearing.
DR. COHN: Great. We will look forward to hearing what the outcomes of those conversations are.
MR. HUNGATE; We look forward to providing them.
Now, Mark, I think you are on next.
Agenda Item: Subcommittee on Privacy & Confidentiality - Mr.Rothstein
DR. ROTHSTEIN: The Subcommittee on Privacy and Confidentiality met this morning and decided to go full speed ahead with our research on the issue of privacy and confidentiality of the NHIN and in particular we are going to focus our efforts on the issue of patient control of health records and our goal is to be able to reach some closure on this topic by the February meeting. We are planning several conference calls as well as a meeting of the subcommittee the day before the full Committee meeting in February, and our hope is to have at least that part of the report or the document whatever shape it takes, have at least that section completed.
The next section on our list of topics to complete is the one that deals with such issues as role-based access restrictions. What we have decided is to try to concentrate on those issues that would affect the design and architecture of the NHIN first so that should we be asked to have some input into the design of the system either in the department level or by the contractors we will have that ready to go. We are not sure when or in what exact form our ultimate work product will be distributed but it is important to us and we think the full Committee that the substantive work be completed and sort of ready to be rolled out on a short time frame when the need arises.
DR. COHN: Very good work and we are certainly informed and reminded of the international learnings that may exist.
DR.ROTHSTEIN: It is amazing everybody has got the same issues to deal with.
Agenda Item: NHII Workgroup - Dr.Cohn
DR. COHN: Okay, the other two reports are obviously the NHII Work Group where we had the action item today and I think as you heard we are trying to come up with an actual report that contains the recommendations as well as background relationship to personal health records.
It has obviously turned out to be quite a topical area and I think that the letter itself was very valuable to help remind everybody about the variety of things that are there that are called personal health records and may actually help move us towards some better ways of characterizing and describing that.
So, obviously that is moving forward. The NHII Work Group is going to be polled for a conference call in January to begin to talk some about next steps for next year and we will hopefully be able to come back in February to be able to report on exactly what we have decided in prioritizing and the work plan for the coming year.
So, that is where we are on that one.
Now, the Executive Subcommittee I think we are polling for a meeting towards the end of December to begin to --\
MS. GREENBERG: For the nineteenth of December, no, seventeenth or eighteenth, whatever, Monday or Tuesday before Christmas.
Agenda Item: Executive Subcommittee - Dr. Cohn
DR. COHN: For a conference call. We will do some agenda planning as well as sort of discussing sort of the overall progress and I don't think I have much more to say than that at this point. We may very well also have a second call shortly before the February meeting just to sort of see where things are and what changes need to be made to the agenda at that point but that is sort of the level of activity for the Executive Subcommittee at this point.
Agenda Item: Future Agendas for NCVHS Meetings - Dr. Cohn
Now, I actually will be representing the Committee at the upcoming AHEC meetings. I think we identified that this was a valuable activity for the NCVHS to be visibly engaged in. So, we will be there sort of going forward.
PARTICIPANT: Your voice is dropping.
DR. COHN: I am sorry. I was commenting that I will be planning on attending the AHEC meetings in person at least for the future as my schedule will accommodate that.
Now, beyond that obviously we have meetings. That was just sort of a point of information.
John Paul, did you have a question?
DR. HOUSTON: Is it possible if you can't audit that maybe it might be good for one of the other subcommittee chairs to attend so that we always have, to the extent possible we have somebody representing or at least you are from NCVHS as the participant to hear what is going on?
DR. COHN: Sure. I think what we will be doing is monitoring this whole thing, the environment as it evolves because clearly things are still new here and I do think we have identified that it is important that we be working collaboratively with them .
DR. HOUSTON: I think at least in the beginning it might be good to make sure we have eyes and ears at the meetings to the greatest extent possible. I don't know whether that presents a problem from an NCVHS funding perspective or --
MS. GREENBERG: No, I mean we are committed to certainly supporting Simon's participation and if he is not able to attend then we will identify someone else.
DR. COHN: Good point, and I think we all basically would agree.
Now, what I wanted to do obviously with the remaining sort of minutes and there are always two issues as we end the meeting. One is your thoughts, what worked well in the meeting and what didn't; what can we improve, just sort of in terms of the actual how we have structured it, what the flavor and the feel of the meeting was and then the question of course is whether what we want to put on the agenda for the next meeting and I have been keeping notes here of what I thought were potential items.
I will run through those but the first question just sort of as an open issue what did people like; what didn't they like; what should we be aware of as you plan the next meeting?
Jeff?
MR. BLAIR: Simon, when you decided this morning to go ahead and handle the action items first while we still had everybody here, I think that was very helpful. It reduced tension and anxiety in terms of time. I sort of felt as if we were able to relax and listen to Dan much more attentively because we didn't have that concern about time pressure.
DR. COHN: Thank you. Do others feel that that should be done early on the second day?
Okay, that is easy enough to change the agenda around to support that going forward. That is a very good point.
MS. GREENBERG: The only thing I would say is I really would hope particularly since we, I am not saying this to be critical of anyone but since we really to try to end the meeting early in the afternoon at maybe 1 o'clock or whatever that people -- our concern has been in the past you put the action items at 10 o'clock and people want to leave at eleven or something. I mean if we are going to schedule speakers and we don't usually schedule them for after lunch but if we are going to schedule speakers on the second day then I really just encourage everyone to try to be here until the meeting is over.
DR. COHN: I think you should say it a little stronger than that. I think it is an expectation of membership that people attend the meetings and I think people will have reasons to not be here and we understand there are unavoidable issues. We all have day jobs as well as here but certainly to the extent possible the expectation is we try to run these meetings in a way where they provide people with the ability to make it home in a reasonable fashion. So, we ask everybody to sort of honor that expectation.
MS. GREENBERG: Thank you.
DR. COHN: Justine?
DR. CARR; Simon, thank you again for the opportunity for the full Committee to exchange ideas. I think that the agenda that is evolving on the EHR clearly touches every subcommittee and we are struggling with trying to get everybody represented and it is a challenge because you know the committees meet at the same time but I think the more we can build in the opportunity for the entire Committee to meet on certain topics the richer and more fruitful the subcommittee work will be.
DR. COHN: So, does that mean you like the briefings and discussions that we had?
DR. CARR; Yes, I think I mean even discussing the letter I think we all learned things. Not being in the Privacy Committee it gave me a different, deeper respect and appreciation for all that that entails. I think the secondary uses touched on a lot of what everyone does. I mean you know the real challenge and maybe we need to think about this in terms of how we configure our meeting time, but where we are all working on many related issues maybe I don't know, maybe we don't have the subcommittees all meet at the same time. Maybe they meet sequentially or the topics become sequential so that we can all participate in them but I feel that with the cross fertilization we are moving ahead much more quickly and getting to the most important issues and the expertise on this Committee is fantastic and everybody is begging everybody to join their committee but maybe that is a message. No, seriously though maybe we ought to be configuring in a way that we go through agendas that take the work of each subcommittee but that we all participate in it because it is like a three-wheeled cart or wagon or whatever when you are trying to talk about something and you are missing an element of expertise and then you find out at another meeting and then you start again and I think we are very privileged to have the diverse expertise that we have here and we should leverage it.
DR. COHN: And obviously, Justine I want to thank you for being willing to join the Standards and Security Subcommittee.
DR. CARR: I want to join all the committees.
DR. COHN: As Justine was talking I was reminded of your comments about strategic planning and how to deal with the issues where there is overlap.
MS. MC CALL: And I think it is very similar, the comments I would like to make now are very similar to what Justine said. To draw an analogy to what I see in industry it is that right now we are aligned by function. So, we have the privacy and confidentiality function and the quality function and the NHII function and when questions are very discrete and specific that can work very well but it has changed a little bit and so a different configuration not to wipe that out but to approach those in a different way may be valuable. So, just as a food for thought, more a thought exercise for everyone is to say that if there is a huge topic, secondary uses there are going to be things that impact NHII and quality and privacy and confidentiality and standards and populations and so that what we do is we take the really tall nails on the board with respect to the issues, the most compelling things that need influence right now and now I am looking at Jim Scanlon as well. So, what are those and what comes out of AHEC and what is it that we see that nobody else has seen and that we tackle them in a dare I say cross-functional to use that paradigm frame? That is food for thought. There is work in the queue that must be addressed but it could be something that we could migrate to for things that are truly cross disciplinary.
DR. COHN: I guess I would jump in on that one and say that I think that we are using a mixed model right now where we have subcommittees but we are increasingly bringing issues for the full Committee to work on. We are going to have to experiment and see how this works because I agree with what you are describing and I am not sure that we are looking at all of the EHRs. I think we are beginning to look at the NHII from all the various aspects but it is important that whatever it is we are looking at here it is obviously more than just EHRs. We are really seeing that we are getting much more close to that NHII paradigm that we have been talking about.
Anyway we will continue to evolve this thing. I agree with you. It is a real issue.
Paul?
DR. TANG: I, also, really think the last few meetings were very productive because of the discussion and the cross fertilization. So, I wonder if Carol's idea, you know the retreat she talked about for the full Committee, maybe we need to have that sooner rather than later because I think trying to design how we interact and derive synergy would be very, very important and can significantly change our productivity. I think it was correct that we have actually put out more things by sharing and being able to hear each others discussion. I think that really enhanced our work. So, figuring out how to do that would be a very useful exercise and pay off.
DR. COHN: Obviously Marjorie and I and Jim need to talk some about the strategic planning session and we don't want to start announcing dates or even what form it will take because I would like if we are going to do it for there to be a way where people can actually feel free to express their thoughts. So, I think it will require some planning.
Other thoughts in terms of, I think I am sort of hearing that at least the way we have been doing this meeting seemed to work pretty well. Probably we will wind up I bet beginning to put more presentations in because we need to achieve a balance there and there is always a balance that will be bouncing back and forth but I just would expect that the way things are happening that we will be engaging a little more with outside speakers at least for the next meeting.
Marjorie?
MS. GREENBERG: This is really helpful feedback obviously to us, the Executive Subcommittee and the Executive Secretary. I just wanted to add my appreciation to Debbie Jackson.
(Applause.)
MS. GREENBERG: Who really sort of puts together these agendas in a very organic way and she is much more flexible than I am and so it is great particularly when I am out of the country. I think it goes really well but I mean I know I will get sort of attached to doing things one way but Debbie is just so flexible and she just sees what you all want to do and what needs to be done and she makes it work and she also just when I know at the last minute if people would suggest new speakers to me I would say, "I can't deal with that." She just finds them. She gets them here and I just think that she is behind the scenes but I wanted to recognize that. That doesn't mean that you should think of all the possible ways to drive her crazy. We do need to eventually put something up but also I want to say this to the subcommittees, too. We really try to get agendas up on the Internet at least a month before the meeting and then recognizing that they will change and we will put up new versions of them but you don't have to wait until you have every last speaker or whatever and sometimes we may push you and you are not real comfortable with that but we can always just put a topic and then change it but I think people want to just even make a decision am I going to go to that meeting. I don't mean the members. You don't have that choice or the staff and so they need to know what are the topics that are being discussed. So, we do try to do that but obviously we also try to remain flexible.
We are grateful to all of the staff, the lead staff, the other staff. It is amazing how people get into it.
DR. COHN: Let me move just to talk about the notes that I made about the next meeting. Obviously many of these are notes and some of them may be handled with the full Committee and some of them may be handled by subcommittees or work groups. Some of them may get done then or in June, and we will sort of see how it plays out but the notes I made included an update from HHS on the statistics work that the council was starting to undertake.
MR. J. SCANLON; Actually would you like a full discussion of the standards?
DR. COHN: Yes. I am not saying it very well but that is what I was referencing because I think that was an area that I think we all thought was interesting.
I, also, heard that there was going to be sort of a compilation of the RFI responses on personal health records from CMS and I have written down sort of a question mark as to February but I think we would want to hear more about that as a full Committee. I am not saying the NHII work group wants to hear about it alone but I think it is potentially an interesting area that we would want to all hear the report on about.
There is the HIPAA enforcement rule, final HIPAA enforcement rule that we won't want to spend hours on but we do need to be updated on it.
Now, I have a note here about, it says, "CHI update." I am trying to think of why I wrote that down there except that obviously that group is doing work and once again it may be something that Standards and Security needs to look at.
MR. BLAIR: I think we had had that on the agenda and I think it is combined with CHI and health architecture together in terms of plans and directions.
PARTICIPANT: That could be even do you think the full Committee?
DR. COHN: I don't know. I think we can hear from Jeff if he thinks maybe Standards and Security. I had it written down here and without Steve Steindel being here I was going --
MS. GREENBERG: CHI and what?
MR. BLAIR: FHA architecture.
MS. GREENBERG: And this is all under ONC?
DR. COHN: Yes.
MR. REYNOLDS: Simon, one possibility is whether or not the full Committee is really attuned to the whole CHI. I mean this came through here at different times, pieces of it did. So, we are looking at the new stuff that they are coming out with in standards and security but the overall because you keep hearing it more and more now, anytime you hear EHRs, anytime you hear anything else. So, it may have been a significant enough change in the full Committee that a kind of a restatement of what it is and what they are may possibly be helpful to the full Committee and then we will continue to move forward with the new stuff.
DR. COHN: But we actually had a presentation I think two times ago about the FHA but I would I think defer to you for you and Jeff and Steve Steindel to figure out whether there is something that needs to be described that we all need to know about at the next meeting. Otherwise we will leave it for the subcommittee.
Bob, did you have a comment on that ?
MR. HUNGATE: A question and comment. I feel a need for some kind of a metric to tell me how much progress we are making in real adoption of standards. Now, we talk about standards and their importance but I don't really know where we are in terms of that adoption process as a percentage of how many of them we need to have adopted. I have an uncertainty of where we are. I know it is important but I don't know what our real progress is and that is just an uncertainty. I don't know whether there is a metric that --
DR. COHN: I think I would say that later this year we will have a briefing probably from the Harvard Group and do you remember this grant that was let by the Office of the National Coordinator? I don't know whether they are going to be focusing on that piece versus the actual implementation but I don't think we know exactly all that they are going to include. I have been trying to figure out exactly, you know how exactly to describe the standard universe and it may be a tough one to approach.
MR. BLAIR: Simon, you and I wrote a chapter that was in that healthy people book on standards and I pulled together a presentation for folks that are not especially familiar with the standards pieces and we might talk about whether the presentation that I pulled together would be appropriate or not for the session on standards.
DR. COHN: Okay.
MR. BLAIR: This is in addition to CHI not in place of CHI and FHA. It is just sort of an overview so somebody could understand the landscape of what has been happening with health care IT standards.
MR. J. SCANLON: The other thing we could do as part of the same briefing I think we could ask NLM to come brief the group on all of the standards we have adopted somehow supported and who has actually implemented them is harder.
DR. COHN: Yes, that is the part I was trying to get at.
MR. J. SCANLON: And the mapping that actually interlinks the standards. I am pretty sure somebody from NLM could actually give a nice overview of all of that and then CHI could tell us what they are actually working on.
DR. TANG; NCHS is doing mapping with SNOMED and --
DR. COHN: Their view is described differently but it is really under the aegis of NLM.
DR. TANG: There are probably half a dozen or more mapping activities at NLM.
DR. COHN: Okay, so, we will note that. Now, I have a note here about the update from CCHIT and given I think the progress that they are making I actually think that February would be a very good time to hear about where they are. Given the success of our last conversation on privacy and confidentiality obviously we will want to repeat that activity. So, we will make sure to include that.
Now, this is a question for everybody. I don't know whether it is for this group or for standards and security or NHII. There was a report that was recently released as originally funded by the Office of National Coordinator on Fraud and Abuse which I thought was a rather interesting report. David mentioned it very briefly. The question is whether there is any more that we want to know about that. I noted it and I don't know that I have an opinion about whether it would be a value added for everybody or whether it is just something we should send a copy of it out.
DR. TANG: It deals with data quality as a lot of fraud can come from data that is not truly representative. I mean I think that does bear on it.
DR. COHN: Okay, the final piece I had here and I was writing down all these things as we went along but the final piece was really the question about where the NHNN piece will be at that point and there may be something that we ask David Braylor to give an update on or it may be something that we would decide that it deserves a presentation in its own right if we can sort of figure that one out.
MS. GREENBERG: You mean the AHIC?
DR. COHN: No, I mean the NHIN. That is something that may be important.
MS. MC CALL: I would love for that to be full Committee and to the extent they are ready for a full presentation that would be wonderful. If not that, an update.
DR. COHN: Okay, great. So, anyway that is what I have and obviously we will be asking the Office of the National Coordinator to come and update and everything else and that was what I had been noting as I wrote down the --what are we missing, Marjorie?
MS. GREENBERG: Okay, well, I had written quite a few of those down, too, but you added some additional ones. Did you want to have a presentation from CSI on their report or just we send it out and I know we were interested possibly for this meeting and Scott wasn't available.
DR. COHN: That is right. You know, we will look at it as the Executive Subcommittee and I would ask others. I mean my own view was let us send out the executive summary and recommendations only because I think in my view the value of the recommendations may be having the subcommittees and work groups see if there are any items that they want to take and sort of move forward or is this an issue that CSI has sort of started, but let us look at the agenda and see if we have time and that would be great. We realize as important as this is it will be 4 months after the release by the time --
MS. GREENBERG: Okay, also, at this meeting we had agreed at the Executive Subcommittee or we had asked at the Executive Subcommittee for Dr. Sondik and the liaison to provide an update or briefing on issues related to data release and confidentiality particularly having to do with vital statistics and Dr. Sondik was out of the country so we had agreed that we would defer it until February, but I think that is an issue for February. We have heard we have a new liaison now from the board and of course Bill is the liaison to the board and I believe they are meeting in January. So, that would be timely also to get an update from them. You had asked me at some point to provide an update on what is happening with the international classifications and the WHO work. So, just let me know when you want me to do that .
DR. COHN: Keep that on the list and if we have time we will do it in February.
MS. GREENBERG: Okay. Then we had also talked about establishing contact with the new chief medical officer of the Department of Homeland Security and thanks to Debbie, she keeps track of this stuff. So, she doesn't let us forget it and, Harry you said you knew him, Don Ringle?
MR. REYNOLDS: No, I didn't say that.
MS. GREENBERG: Oh, okay, maybe not. I had that note here but in any event either at a subcommittee or a full Committee level that would -- well, that fits in very much, too, with the population issues related to disaster preparation and all of that.
MR. J. SCANLON: The major function if you are interested in public health and medical responses that is not Homeland Security. That is HHS and he is the medical officer at HHS or PHS but it is for their function there. I don't know that he would be able to talk about the medical and public health response.
MS. GREENBERG: I thought it was how the, Steve isn't here but how the DHS up until the naming of the chief medical officer there really wasn't kind of a focal point for these issues I guess but how they interface with the department --
MR. BLAIR: Marjorie, about 6 months ago I had seen a list of standards that the Department of Homeland Security was saying that everyone had to adhere to including health care and they were not consistent with those that we have been going through with the CHI standards and of course that caused great concern and the thought that I don't know whether your request that the chief medical officer was in response to that but if it was we would like to have somebody that could talk about what standards they were adopting for response to bioterrorism and other health emergencies.
DR. COHN: Let us talk about this off line.
This is not a full Committee discussion.
MS. GREENBERG: But it was on our agenda.
DR. COHN: Other thoughts for the agenda?
DR. TANG: It is interesting we have been talking a lot about the direction of pay for performance and performance measurement. I wonder if it would be useful to get a briefing from CMS. I don't know whether Mark would do that or he would designate it. They are obviously going in the direction of a demonstration project but from a data point what is their thought or even what do they want us to do.
DR. COHN: We could get Terry Haywood talking about that.
MS. GREENBERG: I did have on here scope of work but that is different I guess.
DR. COHN: Yes, that is accumulated.
MS. GREENBERG: It is related though. I worked for the PSRO program. So, I haven't caught up with all the new terminology but in any event okay. So, I did have that on here as well and is there anything else? Data access policies, remember we talked about that, also, about looking into the way investigating and evaluating data access policies particularly related to small populations across the department and other statistical agencies? There was even some talk about maybe that you might have worked a contract in that area.
MR. LOCALIO: Let us wait until --
MR. J. SCANLON: We are going to do the practices and statistical programs and that will lead to that.
MS. GREENBERG: Okay, so you are doing that, okay.
MS. MC CALL: Some of these things we have been deciding as we go kind of where they belong and yet others we are not. So, is this something that you will be talking about in the Executive Subcommittee?
DR. COHN: Yes, and this is sort of a master list. As I am looking through the list some of them should be full Committee items. Other things I mean especially as the agenda fills up which I think it has probably gotten pretty full here one could imagine that you know the CHI stuff and all that unless there is a determination made that there is really something that we all need to know about that is very important we might ask the Standards and Security Subcommittee to talk about that and then if there is something there we can bring it up in June and that might e how we will do it. It is good to have a master list of these issues so they don't get sort of lost or whatever and so it is useful to get a sense of some of the things we are going yes; others we are going -- your facial expression said it all.
MS. MC CALL: And so the only outstanding question is pay for performance. I don't know if everybody feels that that should be full Committee or if it is subcommittee.
MR. BLAIR: Full Committee.
DR. COHN: I actually think that the Quality Work Group will be taking a more in-depth look at it but I think getting somebody to give us a broad overview around the data issue would be useful.
MS. GREENBERG: The only thing I would say is we have heard that people really benefit from the cross fertilization, from the time for discussion, etc. A number of these issues seem to touch on several groups and we just may have to think in terms of just let me go through all these topics having a 2-day meeting rather than a 1-1/2 day meeting.
DR. COHN: That would work except we already have subcommittees front and back to this next meeting.
MS. GREENBERG: No, I am talking about meeting the whole day the second day.
DR. COHN: Okay, and what I am saying is that I think other subcommittees have already planned to meet the day before and others are planning to meet in the afternoon on the second day of our meeting.
MS. GREENBERG: Who is planning to meet on the afternoon of the second day of our meeting.
DR. COHN: SSS.
MR. REYNOLDS: For February Privacy is meeting the day before.
MS. GREENBERG: I didn't catch that. I am sorry. You are meeting that afternoon?
MS. MC CALL: There may be some specific instances where this would work.
MS. GREENBERG: I understand. I encourage that from our budgetary point of view. Okay. I didn't catch what Harry's group or the Standards --
DR. COHN: But obviously also it is a piece of prioritization and making sure that we are doing things that are important. There will be a lot of work this year.
DR. CARR: I would just make the plea that even though we have all these important things that if we just hear them consecutively and leave here without speaking about them it is not a take.
DR. COHN: Yes and thank you for that comment. You are absolutely right. I think that is why I do prioritization issues. It is so important and why some of these we may say, "Geez, we need to hear about it but it can be held in June or it can be in September or whatever or geez, that is something that the Subcommittee or Work Group on Quality is going to be dealing with and they will come back with a distillation of the information to the full Committee."
There are lots of ways to handle these issues and not all of them need to be in February for full vetting. So, I think we have put a list together and we are getting a sense from you of what is important.
MR. BLAIR: I am not aware of this having been mentioned before but between Maria Friedman and Marjorie, Marjorie keeps us apprised. Anytime there is an HHS announcement we get an e-mail almost immediately and Maria does that for any CMS announcements and there have been many many times when that has been very helpful that we have received prompt announcements that the RFAs are announced or an NPRM or the final rule and I just wanted to go on record to say that that is very much appreciated.
MS. GREENBERG: Good because sometimes I think should I really send this to everyone, but I say, well, you can always delete. So, you would rather I erred sort of on that side, okay.
DR. COHN: Okay, I just want to take a moment and thank the members of the Committee. I, as Chair obviously appreciate your support and help for this year and obviously going forward. So, thank you.
We have already in one way sort of thanked all the staff but I just want to, myself say that we all appreciate your help and support. We know that we would not be able to do this without all of your help and I am sort of looking 360 degrees around the room for those of you who are here as well as obviously all the support people that are sort of behind them enabling all this to happen. So, we really want to thank you. We really appreciate you and thank you so much.
Happy holidays.
I think with that the meeting is adjourned.
(Thereupon, at 1;20 p.m., the meeting was adjourned.)