[This Transcript is Unedited]
Hubert H. Humphrey Building
Room 705A
200 Independence Avenue, S.W.
Washington, DC 20201
Agenda Item: Welcome and Introductions - Dr. Lumpkin
DR. LUMPKIN: Good morning. Welcome to the meeting of the National Health Information Infrastructure Workgroup. As all meetings, we’re on the internet for this one? We’re live on the internet, two or three of you out there, it being August -- but you’re also welcome, in a personal sort of way.
The format of this meeting will be somewhat different than any of the other meetings, we’re going to open it up and some report backs from the NHII Conference. Kathleen you’re going to go over the measures as part of that session. Talk a bit about the draft letter for the Secretary on the NII, as sort of a follow-up. Then we’ll have a short panel that is to begin to talk about the personal health dimension. I particularly wanted that as the title of this session because there’s been a lot of focus around the personal health records, which is only one piece of the personal health dimension and I wanted to make sure that we’re not too focused on this issue -- much more to that.
And then after the panel -- we’re going to ask the panel members to give short presentations -- and we’re going to spend the bulk of the meeting then discussing it and the panel members are going to be encouraged to participate. So rather than viewing this as a question and answer format we really need to get our arms around this issue of the personal health dimension and identify directions. Subsequent to that we will use the results of this discussion to direct future hearings or activities that work in relationship to the personal health initiative.
Are there any questions or additions to the agenda that we want to make? If not then we will start with introductions and we will start to my right.
MS. GREENBERG: I’m Marjorie Greenberg from the National Center for Health Statistics, CDC, and executive secretary to the Committee.
DR. COHN: I’m Simon Cohn, I’m national director of Health Information Policy for Kaiser Permanente and a member of the Committee.
DR. HARDING: I’m Richard Harding, I’m the chair of the Department of Neuropsychiatry at the University of South Carolina and a member of the Committee.
MR. HUNGATE: I’m Bob Hungate, principal of Physician Patient Partnerships for Health and member of the Committee.
DR. HUFF: I’m Stan Huff with Intermountain Health Care and the University of Utah in Salt Lake City and a member of the Committee.
MR. KAMBIC: I’m Bob Kambic with ASPE here at HHS and staff to the NHII Working Group.
MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics, CDC, staff to the Workgroup.
DR. YASNOFF: Bill Yasnoff, Office of the Secretary, liaison to the Workgroup.
MS. FYFFE: Kathleen Fyffe, ASPE.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the Full Committee and staff to the Workgroup.
MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, a member of the Committee.
DR. ZUBELDIA: Kepa Zubeldia with Claredi Corporation, I’m a member of the Committee.
DR. SHORTLIFFE: Ted Shortliffe, Columbia University and a member of the Committee and the Subcommittee, or the Workgroup.
DR. DEERING: Mary Jo Deering, Office of Disease Prevention and Health Promotion, lead staff to the Workgroup.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, NCVHS staff.
MS. BAUR: Cynthia Baur, Disease Prevention Health Promotion.
MR. BRAITHWAITE: Bill Braithwaite, independent consultant.
MS. BEBEE: Suzie Bebee, ASPE.
MR. AFANO(?): Bill Afano, Blue Cross/Blue Shield Association.
MR. CHRISTOPHERSON: Gary Christopherson, Veterans Health Administration, and I’m very happy to see you guys doing this thing.
MR. RHODE: Dan Rhode, American Health Information Management Association.
DR. HAMMOND: Ed Hammond, Duke University, President of American Medical Informatics Association and vice chair of the HL-7 Technical Steering Committee.
DR. LANSKY: David Lansky, Foundation for Accountability.
DR. MCDONALD: Clem McDonald, Regenstrief Institute at Indiana University.
DR. LUMPKIN: Ok at this point I would like to have any statements of conflict of interest with the subject matter for members of the Committee.
DR. HUFF: I don’t see anything on the agenda that would apply to this but I have potential conflict with HL-7 and with LOINC.
DR. MCDONALD: The same thing except I’m not, the same thing with LOINC but I don’t see anything on the agenda that would address that.
DR. LUMPKIN: I guess in the first thing we just need to clarify those who may have identified, at one point I was on the board of HL-7, have left me with a conflict of interest with my current job, so that means I don’t have a conflict with it even though I have thought I did. It lasts for a year afterwards, so I’m cool.
Let’s go ahead with some discussion about the conference. I, and I’m sure the rest of the committee, want to congratulate you Bill, on a very successful conference. There were hundreds of hundreds and hundreds of people and the Secretary himself came.
Agenda Item: Report on NHII Conference and Follow-up - Dr. Yasnoff
DR. YASNOFF: Thank you. I’m not going to show slides, you all have the handout in front of you, and let me just briefly go over the recommendations that came out of the conference and then there’s time for discussion. As you said, the Secretary was at the conference and announced the licensing of SNOMED by the government and its availability to anyone and everyone in the U.S. at no cost, although that is not going to happen immediately, and I’m happy to discuss that, also the initiative with the Institute of Medicine and HL-7 to define the functionality of the electronic health record.
The Secretary also seemed to, in his prepared text the Secretary asked for annual reports on the progress of NHII but at the conference he revised his remarks to ask for quarterly reports. So the Secretary has now requested quarterly status reports on NHII. There were well over 500 people there.
As you know there were eight tracks, privacy and confidentiality, architecture, standards and vocabulary, safety and quality, financial incentives, consumer health, homeland security and research and population health. So let me spend a couple minutes going through what I would call an early summary of the recommendations and if there are things that you heard at the meeting that are not here or things that you heard at the meeting that are not stated here in a way that you think is consistent, please say so.
In the privacy and confidentiality area the recommendations were to establish a permanent independent entity to oversee and advise the NHII activity. To establish an ethical, legal and social issues program similar to the one in the human genome project to address these issues within the context of NHII. To educate the public about HIPAA and NHII. And to evaluate existing infrastructure projects to determine the degree of public confidence in a potential NHII.
The architecture group recommended an NHII task force styled after the internet engineering task force to develop essentially the architectural framework and recommendations and protocols for NHII, including an architectural roadmap, also regional steering committees. A clear recommendation was that all these architectural elements be non-proprietary and standards based, security needs to be interoperable, communications protocols need to be defined. It was also recommended that we should go ahead without a national identifier, national unique identifier, although there was a lot of discussion about that at the conference I think it was clear to those that are there that even if that issue were somehow resolved immediately it would be some time before such an identifier would be available and we need to proceed anyway. Demonstration projects should be funded and data should be labeled at the source, data about pharmaceuticals, laboratory data, etc.
The standards and vocabulary area, the current problem was succinctly stated that standards are not self- improving and that standard messages and vocabulary are not aligned at the present time. It is recommended that HHS create a process to update and enhance standards, that message formats and vocabulary standards need to be aligned, that adoption of the NCVHS and CHI recommended standards needs to be accelerated. It was recommended that CMS create financial incentives for providers to use standards and that there be a process to certify standards and vocabulary implementations.
In safety and quality the overall recommendation is that we move from a cross-driven to a quality driven system and that standards for national quality and safety performance measures be developed. Obviously these are a different kind of standard then what we’re usually talking about in terms of messages and vocabulary. It was recommended that a billion dollars of research funding be redirected to look at quality and safety as it relates to information technology and that the federal government develop a national quality database. That integrated decision support systems and performance methods be built into our health information systems. That we need specific legal action for safety and quality reporting, and I would note that there are bills to that effects pending in Congress. More clinical informatics training was needed and should be HHS funded. That we need to improve adverse event detection and reporting, particularly automated detection and reporting, and that we need exchange standards for decision support systems and a shared repository for decision support algorithms.
In the financial incentive track it was recommended that there be federal funding for standards for 40 to 50 new demonstration projects, and a public/private financing vehicle for information technology and health. That there be investments in local health information infrastructures. That there be payer reimbursement incentives, that the legal barriers to investment that include such things as the Stark Rules, fraud and abuse, and private inurment(?) be addressed and eliminated in terms of the problems that they cause for health IT investment and that we need to educate both health professionals and consumers with respect to health information technology.
Consumer health, the overall statement was that, correctly of course ,that people should be the center of a U.S. virtual health system, that data elements relevant to consumers be included in information systems. That there be a consumer representative on NCVHS. That consumer health literacy should be improved. That trustworthy health and disease information be readily available. That NLM and the private sector should improve information access, including both search tools and direct linkage of information resources to individual records, both personal and provider records. That AHRQ involve consumers in patient safety. That progress measures be developed for the personal health record. And that decision support is needed for consumers, including alerts and reminders.
The homeland security track, the stated goal was collaboration among federal, local, state and private agencies using coordinated platforms that interoperable, secure, and accessible. That an information technology clearinghouse for transferable, scaleable technologies be developed. That all government agencies be required to participate in NHII, in particular that CDC’s Public Health Information Network needs to be aligned with NHII. That state and local demonstration projects be done that have goals and objectives that include those relevant to homeland security and that all homeland security funding agencies should work together in a unified framework to promote and utilize standards.
And finally, the research and population health track, the goal was to have multipurpose data use and standardized research and population health data. That there should be a standard set of patient characteristic linker variables, and this of course relates to the other recommendation about proceeding without a national identifier. That there needs to be a national registry of data definitions, data sets and meta data for research and population health. That there should be incentives for data providers to conform to NHII standards and provide data for research and population health. And that we need to ensure a feedback link from researchers to the public to improve personal health decisions.
So that’s a very brief and rather densely packed summary of several days of discussion at the meeting. I think, I have to say I had high expectations for the recommendations coming out of this meeting and my expectations were exceeded, I think the recommendations are thoughtful and relevant and certainly numerous. And I’d be happy, I think we have some time for discussion and questions, I didn’t want to spend all the time presenting this material. Thank you.
DR. LUMPKIN: Can you give me an idea, how long do you think the discussion would be for the measures?
MS. FYFFE: I would say about a half hour.
DR. LUMPKIN: So we will have time for that towards the end of the discussion, I just wanted to get an idea. I think given your experience with this Committee I will abide by your estimate. Any questions? Let me just sort of start off with one question which is where do we go from here in your perspective?
DR. YASNOFF: I think as I indicated at the last meeting, it was somewhat challenging to put together this summary this quickly, and the plan from the beginning for this meeting was to take these recommendations, or really all the recommendations from the conference and for the program committee to work together to develop a manuscript for publication. And that in fact is being done and our target date for that is actually the end of this month, so this is actually an important intermediate step. So we’re going to summarize these and publish them.
I think that in terms of what comes next I have to say that the meeting tremendously raised the level of interest in this issue in many quarters and so it’s been very difficult to keep up with the requests for information and the educational issues of new folks who are interested in this. I think the problem is now clear and there are lots of discussions going on within the Department as to what actions need to be taken first. I think there’s general agreement that we need to pursue this vision but there’s lots of discussion as to where to go. So I think it’s more, decisions haven’t been made on exactly how we’re going to proceed.
I think the strategy that I presented to you before has been expanded because of this meeting. If you’ll recall the strategy that was originally developed for this had three elements, inform, collaborate, and convene, and so we’re going to continue to do those three things. But in addition we’ve added three more elements to the strategy, standardize, demonstrate, and evaluate. And so standardize obviously recognizing the importance of standards, and I’ll say a bit more about that in terms of what standards are needed and we need to obviously not just have the standards but get them adopted. Demonstrate, to show in various settings that NHII works, particularly in local communities, and as you know there’s $50 million dollars in the President’s ’04 budget that’s going to AHRQ for demonstration projects and AHRQ is busily putting together an RFA which is going to be on the street October 1, most likely before it’s clear whether the money is really going to be available, but they’re determined to get that RFA out. And then evaluate, I think the evaluation is very, very important, not just for these demonstration projects but to deal with specific issues that have been raised and I’m going to come back to standards in a minute but let me say something about the evaluation.
It’s very, very clear that we have a serious problem in terms of misalignment of financial incentives. This is especially clear from the perspective of the individual provider, where the individual providers investment in information systems usually is rewarded with nothing, or next to nothing, the return on investment might be very, very small or non-existent, especially for smaller offices. And so what we’re asking the providers to do in essence is to invest in systems that benefit other people. So there seems to be general agreement now that the financial incentives need to be aligned, but when you go beyond that and ask the question what exactly needs to be done to align the financial incentives, what specific actions need to be taken, what specific policies need to be developed, there’s a wide range of viewpoints. And so we’re actually commissioning some work in that area to look at financial incentives and move toward building what you might call an economic model for NHII where we can at least begin to look at what a particular policy change might create in terms of adoption. So that’s an important evaluation area.
In the standards area as I mentioned, of course, SNOMED is now available and through the CHI process the government has endorse HL-7 and LOINC, etc., and is adopting those for its own use. But we still have some serious gaps that I think this group and other parts of NCVHS are very well aware of in terms of standards. One of those, for example, is drug terminology, which is being worked on. But another one is the issue of an interchange standard for the complete electronic record. One of the most common transactions that you’d like to be able to do with any kind of medical records is essentially when a patient moves from institution A to institution B or happens to arrive at institution B you need the entire record from institution A. And while it’s possible using HL-7 to transmit the entire record it’s very, very difficult and we need to make that process very simple. And in fact if we had, think of it as I’m sure most of you are familiar with rich text format, which is kind of a standard exchange format for word processing documents, well we need a similar type of standard exchange for electronic records and then if every electronic record system can read and write to that then we really create the interoperability that we’re trying to foster. So that does not exist and so we’re going to work towards that as well.
So I think I’ve said enough.
DR. LUMPKIN: Clem, you’ve got a question?
DR. MCDONALD: I actually have a couple of them. One I wanted to emphasize, you mentioned something about delivering, it’s under one of the bullets, local source at the data source, I’m not sure that everyone understands that’s not data entry at the source, that’s with the drug manufacturer put the codes right on the label with a bar code, or a lab instrument vendor which ships something in, at least I think a lot of that is or could very rapidly be cooking because they are a SNOMED activity in the FDA and there was some talk about the VA requiring vendors to do something like that even last year, so there could be some easy quick hits on some of those things if they were pushed.
And then the question about delivering, I’m not a member of any committee, let me rephrase that, I’m not in office of any fact HL-7, I’m not chairman of any committee, I do have interest in HL-7, but we actually send records in HL-7, it’s very easy, and I’d like to know who says it’s hard. Because if you get it in that way, you get it out that way, it’s sort of an inverse relationship and I’d be interested in talking with them to find out why they think it’s hard.
DR. YASNOFF: Well, I think the thing that’s missing is the ability to have the transaction request in HL-7 that says send me the whole record, and that doesn’t exist. And the other thing that doesn’t exist is the ability to take any, the data that’s stored in any arbitrary electronic health record system and map it to some format that can be imported and exported, and that doesn’t exist. And so I think, I think you’re really agreeing with me in the sense that you can do it, it can be done, but it’s not sufficiently well defined, it’s not sufficiently easy to really help to move interoperability along as fast as we should. So that’s my point.
DR. MCDONALD: Well, mapping is a different issue and that’s a nightmare everywhere.
DR. STEINDEL: Bill, thank you. A couple of comments with respect to the workgroup and future activity, and then a comment on what Clem was just talking about as well. When I was looking at the recommendations recalling what was presented in the recommendation session at the NHII meeting and taking a look at what was specifically transmitted with respect to the vocabulary and standards track into your office, there’s a lot more depth then what’s presented in these slides, these are definitely summaries. Would it be possible for the Workgroup to get that depth of information so that when we deliberate we are looking at the full --
DR. YASNOFF: All the recommendations presentations from the meeting are available on the web, and we can have them reproduced for the Committee if that would be helpful.
DR. STEINDEL: Yes, and what I’m also specifically referring to, I know Betsy sent a summary of those recommendations to you for the standards and vocabulary track, and I’m assuming the other track chairs did the same sort of thing, where she condensed the voluminous information down into something that’s a little bit more succinct, and if that information could be provided.
DR. YASNOFF: Sure, if that’s of interest, I’d be happy to provide those with the caveat that those are all works in progress, because I mean this whole thing is a work in progress.
DR. STEINDEL: That’s exactly, that’s why I was, because it’s a work in progress and this workgroup is interested in it, it would be behoove them to see the depth.
DR. YASNOFF: I certainly agree with you 100 percent, this is, it’s a very difficult task to try to summarize faithfully all the different recommendations in a short period of time and I think a full appreciation of what happened at the meeting is not easy to communicate.
DR. STEINDEL: And then with regard to the very last matter, because those of us on the Workgroup who wear multiple hats are involved in a lot of the standards development activity, like Clem I reacted to your statement about the need for a standard to transmit the whole electronic health record and talking about doing that as, what sounded like a de novo process. But HL-7 has been working for the last number of years with clinical document architecture, which is designed to do just that. And even taking it from raw text form where you can just put the whole text blob in a clinical document architecture structure and transmit it down to the level where you could have it as individual elements if we were ever in a total state of an electronic health record. So I do believe that the mechanisms are in place and there’s a new ballot coming out for the clinical document architecture momentarily, I’ve seen the latest draft of it. And so I don’t really feel that we need to start a de novo process but get more involved with the HL-7 CDA process, and since the CDA process is going to be proposed as part of the HIPAA claims attachment, there is going to be an ability to produce it in systems we hope.
DR. YASNOFF: I certainly didn’t mean to imply any de novo process here, our intent is to engage the existing work that’s been done in HL-7 specifically in the CDA and to try to accelerate that and move it in the direction where it will be more rapidly applicable and more rapidly adopted for this purpose. There’s no desire to reinvent anything and so we’re actually talking with HL-7 about this.
DR. COHN: First, Bill, I actually also want to congratulate you, I thought it was an excellent conference and you’re really to be commended for your hard work on that. Steve obviously sits on the, works on the Subcommittee on Standards and Security and I was actually just going to reflect on a couple of the areas you were talking about, not so much to try to provide answers, because I think I agree with you that there are lots of holes and I’m delighted that CHI is obviously working on evaluating and identifying what’s a hole versus what just hasn’t been identified as a standard yet, which I think is very important work going on. Certainly the drugs are an area where the Subcommittee, there is actually information for the whole workgroup, there’s obviously going to be looking at as well as devices, some ideas, another, you know those areas where it’s unclear whether there’s a hole or where we just haven’t agreed on a national standard on that. In October the Subcommittee is going to start looking at the whole issue of document architectures, and indeed we’re almost going to be beginning just because we’re going to talk a little bit about claims attachments in October. Now I’m a little less certain then Steve is whether that solves the whole problem, in fact I’m sure that it doesn’t. They will question and I think they’re right, is what sort of solutions do we have with the existing pieces versus what more do we need to layer on that, and that is something I think the Workgroup would probably provide a lot of hope in terms of figuring that out as well as the Subcommittee, I mean this may actually be a session that the Workgroup might want to sit in on around the CDA issues to sort of see how much of this solves, maybe just a thought. And obviously you’re more than welcome to join with us on those.
DR. SHORTLIFFE: Bill, as you know I was unable to attend the meeting at the last minute, so this is the first full summary that I’ve seen. It’s a remarkable set of recommendations because it spans such a huge portion of the entire informatics field arguably and health policy and health care financing, this is a gigantic undertaking if you were to try to work your way down this list in some prioritized order in how to accomplish it all. And I’m struck by how we’re using, we’re using NHII as a kind of packaging of a much larger set of issues then what some people might have first thought NHII meant. This was an issue that came up when our Workgroup created the original report from this group that went to the Secretary over a year ago. If you go back to the generation of the phrase, I mean as part of HPCC, the old High Performance Computing and Communications Initiative, there was basically two portions, there was high performance computing, i.e. super computing and parallel processors and the like. And then there was the National Information Infrastructure that was networking, it was getting the internet into its generation. So for many people, NII as a non-health thing, was the future internet, or the internet of tomorrow. And many people I think who know that terminology, hearing NHII think that what we’re talking about is the health applications of the internet for tomorrow, that that’s really what NHII is.
But this meeting, and this list of recommendations, make it clear that this is much more than just using the internet in support of health care and that the NHII phrase has come to encompass the coordinated effort to create seamless and financially viable solutions to problems that we’ve talked about in informatics for two or three decades, recognizing that the technologies have changed enough that the potential for accomplishing those goals finally exists.
So one of the recommendations on here was educate the public about NHII and HIPAA, the NCVHS is quite aware of some of the misinterpretations of HIPAA that are out there and I think we do need to be concerned a little bit about failure to understand NHII. It’s important to have a nice succinct phrase for describing the activities that you are pursuing and that come out of this report but we do need to be really clear about what we’re talking about and that it’s not just how to use the internet in health care. And so that was one of the things that really struck me as I went down this list, boy, this is like 80 percent of the talks at a meeting like AIMIA(?) or even the Health Services Research Society or many other professional organizations in health care, health policy and health care financing would find a lot of this as being very germane to what they do and suggests a real need for coordination, definition, maybe broadening even more the community that participates in this activity.
And then we ask is the NHII terminology, even though it has momentum, potentially failed to attract participation and understanding of people who really ought to be part of this because they really are as you look down some of these recommendations clearly central to it but who might not, who might think this all sounds like a networking activity where HHS has figured out where the internet is important, and this is just so much more than that. I’m just struck by the kind of political pull and the marketing issues and the educational issues that are implied by all of this as I look down this list.
DR. YASNOFF: I think that you’re exactly right. This is a very large multifaceted, multidimensional activity and I think the challenge for the Workgroup at this point, and I think obviously include myself in that, is to continue as this project gains momentum and as we actually work towards implementation of NHII, for the Workgroup to continue to provide key advice and feedback to the Department in terms of direction, strategy -- mechanisms to deal with problems that may come up. I think that having written this report a couple of years ago now that had this wonderful vision, and now that the vision has some momentum, that adding definition to that vision would be a very important contribution that this group could make.
DR. DEERING: I don’t know if I’m permitted to ask two questions at a time but one of them was added in response, the extra one was prompted by Ted’s comment and I guess I’ll start with the observation which is that I think most of the people, virtually everybody in this room and anyone else we know who’s actually working on anything that calls itself the NHII is related, is still in one way or the other involved in building the “it” however we describe it. And there are very few people who are involved in the education and the community of whatever the “it” is, so it’s a specific question to you but really who all, any of us who work in this field, could you characterize in any fashion, qualitatively or quantitatively, the attention that you and your group will be placing on the information and education activities, not just to the providers and vendor community, but to the rest of the world? Before you answer I should have begun by something that I really did want, I genuinely congratulate you on that meeting and I think I certainly lend my voice to those who say it would not have happened without the extraordinary amount of personal effort that you put in and it was a huge undertaking and I commend you also.
DR. YASNOFF: I think, is this the question from Mary? So Mary, the communication issues are immense with this type of activity and actually one of the first things, that was one of the first things that I pointed out when I started in this role really last September and I identified the communications area as one of the key areas that needed resources and attention. I was not immediately supported in that but I think that after this meeting and particularly in response to the considerable and I should say somewhat unexpected press attention that this meeting received, that I expect that those issues, I will be able to focus more attention on those issues. However, I would urge the Workgroup that if the group feels that those issues are particularly important that it wouldn’t be totally appropriate for the group to make that known. I think that this initiative in many ways is different then other initiatives that have been undertaken by the Department, it really impacts every aspect of the health care system, what we’re really talking about is transforming the entire health care system so that it is efficient, based on information, so that we can more effectively make changes in the system through distributing decision support and so on. And every aspect of what is being attempted here in HHS really in my view will either be enabled or be more efficient if we have this information infrastructure, so it really cuts across a number of domains. And also the health care system touches the lives of every person in the country and so, and people are very sensitive about their medical information, and so we don’t want to communicate to them, we want to community to them accurately what this is all about, so in essence I’m agreeing with you, I think this is very, very important. I’ve been pushing those issues as hard as I can and would welcome additional support.
DR. ORTIZ: I just wanted to give kind of a follow-up on that comment because AHRQ now for fiscal year 2004 is receiving $62 million dollars to invest in IT projects specifically to improve patient safety/quality of care, and a few weeks ago we had an expert meeting where we brought in about 45 people from the government sector, health care organizations, researchers, clinicians, vendors, etc., and we ended up coming up with about five or six general themes that were recommended and one of the strong recommendations was in that domain, that we really need to do a lot more, we’ve done a very lousy job in terms of education, providing information, communicating, disseminating this information, not just to providers but to patients, consumers, whatever you want to call them, also to health care administrators.
So one of the things that came out of that that we’re actually working on now because we’re going to be getting these things about by September 30th, that’s a chunk of our research initiative that’s going to be coming out of this. Now of course it’s $62 million dollars total, so what percentage that will represent we don’t know but at least that is something that we’re actually going to be putting out in the next couple months specifically looking at the issue of getting that message out, communicating kind of the value of information technology, the issue of patient safety, etc., etc., how do we get that out specifically focusing on patients and consumers. I just wanted to let you know that that is ongoing.
DR. DEERING: Can I ask my second question now?
DR. LUMPKIN: Yes, but we’re running out of time, we have three other speakers.
DR. DEERING: And Bill may not know the answer to this but I know that one of the follow-ups that the Secretary did was to name a Council on the Application of Health Information Technology of all the really senior principals, which is a terrific vehicle for bringing people who have the clout and who are responsible and accountable to the table. Is there a formal working relationship between the NHII office, or reporting or staffing relationship, have they said we’re looking forward to what you do? Do you feel that they’re behind you? What significance would you say this plays in their agenda?
DR. YASNOFF: I think that the new Council based on what its charter and what it’s doing is designed specifically to coordinate the activities within the government with NHII, so in that sense it’s a very positive development and obviously we are maintaining a close relationship to that Council and are involved in its evolution and development. And it’s in the very early stages but I think that the recognition of the need to coordinate within the government is a very positive development.
DR. LUMPKIN: And just as a reminder our Committee does have an ad hoc position on that Council and as the chair of the Committee I’d be willing to say that’s a very interesting process at least as we started off where presentations are made by the various agencies and key requisites for those presentations talking about the use of standards and connectivity and interoperability, which is new and different.
DR. HARDING: Thank you, and Bill again, congratulations on this quick document and summary. I had questions like Ted and Mary Jo about the educational thing and I’ll skip that and go right to one congratulation, and that’s the issue of bringing in incentives. I think HIPAA has been too much, instead of having a carrot and a stick there’s been too much stick and not enough carrot, and in this case you have a whole section on financial incentives, I’m not sure they have to be financial, but incentives I think are really a key from this point out and wondered if you had any more you could say about the types of incentives or where you are in the incentive process to help the NHII become something that is accepted and welcomed rather than another doggoned thing we have to do --
DR. HARDING: Another unfunded mandate.
DR. HARDING: Correct.
DR. YASNOFF: I think, I actually wanted to call that track incentives including financial but it just didn’t sound that good and it was primarily financial that people wanted to talk about. I think this goes back to the issue I mentioned earlier about the incentives being misaligned, that we’re asking people to invest who don’t get the benefits, and I think, let me just tell you where I am on this issue based on what I’ve heard at the meeting and in talking to various groups.
There seems to be a wide spectrum of opinion from one of the financial incentives track groups indicated at the meeting that the federal government should immediately allocate $10 billion dollars to this. On the other hand, when the McGlen(?) article came out from RAND indicating that only about half of standard accepted treatment is being given to patients all over the country, Don Berwick(?), the head of the Institute for Health Care Improvement, was quoted, and I don’t know, I haven’t talked to him so I don’t know if it’s an accurate quote, but he was quoted as saying there’s enough money in the system already to fix this problem. And so that seems like very divergent points of view but in reality I think they’re a reflection of the same reality in the following sense, that I think both are correct.
I think Don Berwick is right that there is enough money in the system. The problem is that everyone who has the money in the system is holding onto it very tightly, so as soon as you reach your hand for any part of that money and try to move it towards IT investment your hand vaporizes. And so what’s needed is some seed money, such as the money that AHRQ has for demo projects, to begin to get this process started and if as we expect, and as all the evidence shows, there are substantial savings to the system if we can construct these projects in such a way that we capture those savings and reinvest them in further IT efforts, I think we can make this happen.
But clearly, the comparison I like to make is in terms of technology adoption is with the adoption of CT scanners, and I’m old enough to remember that, and I can assure you, and I’m sure you probably remember this, there were no committees that were sitting around wringing their hands about how slowly people were adopting CT scanners. In fact quite the opposite, they were wringing their hands saying how can we stop everyone from having a CT scanner in this country. And the reason if you think about it is very, very simple, all the incentives were aligned, the hospitals made money, it was prestigious for them, it improved patient safety, it improved quality of care, the physicians made money, and it fit in perfectly with the workflow. So the fact that it was hugely expensive made no difference. So my goal is to align the incentives for information technology the way they were aligned for CT scanners. And I don’t have the answers, and we can talk in detail about different types of proposals, and there is some early data about how different types of approaches work.
DR. LUMPKIN: It creates quite an image.
DR. ZUBELDIA: This is a great report. I have a technical question on a concern that hasn’t been mentioned. One of the principles of the National Health Information Infrastructure is that it is not a giant database in the sky, with all the medical records in the country. It is rather an infrastructure that allows the owner or the custodian of the record to hold it in their domain. And for that environment to work we obviously have to have standards and have to have common vocabularies but we also have to have a common query language. If you want to do a search of everything that’s happening in Cleveland you need to query multiple databases and you need to know how to interpret the results coming back. Without that it will migrate to what works, which is the giant database model, because then you don’t have a program with distributed queries. Is there an effort to build that sort of standard because I haven’t seen anything in that area?
DR. YASNOFF: I think that there are two issues there, one is in a distributed system, which this clearly is going to be, the issue of locating patient records and actually there are a number of ways you can do that and I’m happy to talk with you off-line about that in a fairly efficient way, so that if a patient appears in some arbitrary place you can very, very quickly essentially locate where all their records are and then bring them together and assemble them. The point you raise is I think an issue of how do you access this data once it’s available or --
DR. ZUBELDIA: Let me focus my question a little more because accessing the patient record is something that works well in a treatment environment. I’m thinking more public health. You’re going to do a public health analysis, how do you do a query across all those databases when you’re not accessing a patient record?
DR. YASNOFF: I think that’s a very important issue and that particular issue is not being addressed at the moment. It’s just not an active area of discussion. I think the focus of attention has been, and the focus of this meeting, has been on what I think we would define as the primary users of this in health care rather than on the secondary users.
DR. STEINDEL: Just a very quick comment, obviously this is of interest to CDC and we’ve been giving thought to the type of architecture that’s involved with this and Clem just walked out of the room, but the Indianapolis network does have an ability to query and do those types of searches in a de-identified fashion, so there is thought being given about using the NHII in that type of fashion. As Bill pointed out it’s still very preliminary thoughts.
DR. LUMPKIN: I believe that we probably as a Workgroup, need to at some point as we’re continuing to focus on the personal health dimension also need to revisit the population health dimension, and we should hang on to that question, that’s a very important question, as to future developments and NEDS(?) and all these other things. John, last question.
MR. HOUSTON: You had discussed six separate tracks, I guess, you were sort of running down three and then, you had three initial ones and three new ones, and I guess one of my thoughts was is I’m almost thinking there needs to be a seventh track in my mind, which is one of external barriers that need to be dealt with. And I know some of them are identified within the summary, but I think there’s a lot of good but there are some roadblocks that are outside the control and the purview of this and I think they do need to be addressed because the longer, the further we go without trying to address them the more problematic it’s going to be to knock them down. And the ones that I see, that I think that came up in the summary was do the anti-kickback and the Stark issues, we just, the health system I work for we just did an analysis because we wanted to be able to provide information out to physicians and our legal analysis showed that that’s problematic absent having contributions from the physicians. So by example if there was a safe harbor that could be applied in this particular case boy that would go a long way to doing some of the things that need to be done here, or having some type of advisory opinion that said this is ok, but those are things I think you need, I think need to be put into play immediately. And I think at the same time, I was in the workgroup that discussed privacy, and there are some substantial HIPAA as well as state law issues that are going to confront trying to put together an NHII or at least make it as successful, all of its intended purposes. So again, just a couple comments.
DR. YASNOFF: Let me just respond briefly. I think I agree with you on these legal issues and if you could possibly share that internal analysis you did that would be very helpful to the extent that you feel comfortable doing that. That is under active discussion in the Department, we are aware of those issues, and they are getting active attention.
I think in terms of barriers, I certainly didn’t mean to imply with my strategic outline that we’re not paying attention to those and actually I have my list of the top three list, which doesn’t include that because that’s actually being worked on, but my top three list of barriers, one, educating senior policy makers so that there’s really a good understanding of what this is. NHII is not a simple concept and so in order to get support people have to understand what it is and why it’s important. The second one is privacy, I think the privacy issues remain very, very important and we will be continuing to deal with those in various ways, including bringing together stakeholders and thinking about how to communicate that, and also monitoring privacy practices as local areas develop health information infrastructures. And then the third big barrier is this financial incentives, aligning the financial incentives and we’re again looking very carefully at that to try to now that there seems to be general agreement we need to align them, it’s not clear what exactly that means and so we’re trying to define what that means and get it done. There undoubtedly are other serious barriers as well but that’s what’s on my short list.
DR. LUMPKIN: I would just think that again, reflected in your earlier comments, even though the group focused in on financial I think it’s aligning in the sense it’s to overcome financial barriers, it might be a better way to phrase that because I just know, and I know that there’s a lot of cynical look at physicians and the health care system and people only do things for money and I think that there is in fact some aspect of that but that doesn’t necessarily characterize that in the sum total and there are people who will do this if they’re convinced it will be the right thing for their patients. I’m going to take Clem and then we really need to move on.
DR. MCDONALD: I wanted to respond to Kepa and maybe both reinforce and maybe expand. I think I would envision the NHII might have some databases here and there, I mean the little offices managing back-up and all the rest is tough, if we could have sort of a community database that might be helpful. On the other hand this issue of cross database queries is really nightmarish and I think it probably needs research as well as the standardization because looking for negatives without sending everybody’s database everywhere and the privacy aspects of that is very, very tough. So I just wanted to reinforce that.
DR. LUMPKIN: Thanks. Let’s move on. Thank you for once again sparking a very important discussion on this. We’re going to move on to Kathleen who is now at ASPE.
MS. FYFFE: In your packets you’ll see a draft discussion document dated July 18th that is proposed progress measures for the NHII. This is a discussion document, I have received feedback from a couple of folks, but I’d like to briefly review what we have here and then open it up for discussion so that we can, or you all can communicate to me what you think the measures should be.
The frame of mind that we had when I put together this draft was that we needed something that was fairly simple, qualitative, and doable. I might not have captured everything, but again this is a discussion draft. At a very, very high level we would like to start out potentially with macro measures that would indicate nationwide progress toward the NHII, and also provider use of electronic health records and for local health information infrastructures simply, the proportion of the U.S. population that is covered by NHII, and estimate those proportions as none or started or early stages. The second indicator there is the proportion of U.S. medical training programs with electronic health records for trainees.
The second category of measurement is the scope of the usage of electronic health records by type of health care setting, and there are indicators of progress according to the setting and according to the level of electronic health record, so that for example one site might be home, what percentage of homes are using electronic health records and then what is the composition of those, the proportion using simple or coded with national standards, or capable of being exchanged electronically along with other sites noted there.
Number three, as an indicator, using outpatient visits the existence of electronic health record functionality, proposed list of EHR functions are there, problem list, medications, labs, etc., and then the proportion of outpatient visits that have complete information in each of those categories.
DR. YASNOFF: Let me see if I can add a little bit of context to this. I think that we have in terms of facilitating the development of NHII we have a strong interest in these measures and have had, again, this is one of the first things that I brought to this process when I started is the need to have measures. And I think actually simultaneously and independently this Workgroup had also been thinking about measures and so we welcome the opportunity to work with the Committee to make progress on this. Last time when we discussed this I think there was general consensus that we needed to have a specific proposal to work from, and that’s all this is is a proposal, this is not meant to be anything except a draft, and we would welcome the input from the Committee as to whether we’re going in the right direction or if the Committee wants to undertake its own process to vet these, to get testimony and so on, we would welcome that. I think since we began this process as I mentioned earlier, the Secretary put a new twist on this by requesting quarterly reports and so clearly, having a set of measures is particularly urgent and especially important as those are the things that are likely to go into these quarterly reports.
DR. LUMPKIN: Let’s see. A few responses, I think. First of all I will point everyone’s attention to the fact that there was a fairly detailed note that Kathleen sent out to the Workgroup from Jeff. Jeff is still out on the phone, but he also sent I think, I don’t know if he sent it to everybody, but also sent a shorter summary of his longer note in a more structured format. I think for the purposes of the discussion we should just place that on the table. So we’ll start off with Simon.
DR. COHN: I will apologize to Jeff in case I’m in any way replicating any of his comments because I haven’t fully reviewed them. I actually had one or two comments and that was as I look at this I think that others and I’m sure Bob will sort of comment, in my view this is, what you’re trying to measure here is an important dimension of the NHII, almost more like the, sort of the engineering aspects of things at least to my view, but it’s only one, and obviously there’s going to have to be view of other pieces including does someplace have a financial incentives in place, have they done some work on that, just as an example, which I think are important other indicators. But as I look at this and obviously since 18th there has now been the release of the IOM report on functional aspects of the EHR, and of course we’ll eventually have the HL-7 functional model also. And I think you might find it very useful to align what you’re doing with that since it really lays out, I mean it’s not so different but it’s different enough that you might find it does a lot of this work for you in terms of how you sort of segregate the terms and how you describe functionality so that you can actually use that as the template for how you might do an evaluation like this. I know Ed Hammond also participated in that work. I had the opportunity to do it, Gary Christopherson obviously was involved helping to fund it and all of this and I think it’s once again very good work that you should try to leverage.
MR. HOUSTON: A couple points. I know I’d made the comment when I reviewed this a few weeks ago that I think there has to be some type of architectural milestones, I mean I would be interested in, when we talk about adoption of EHR’s and use of EHR’s, but I think a big part of NHII was an architecture, too, which was supposed to support all of this and it would be good to sort of have some type of measurement criteria for developing the actual architecture itself that’s necessary to support all this.
The other point I guess I had was maybe from misunderstanding is the definition of outpatient, but when I look through on number two of this grid I think that really I think it would be interesting to see adoption of EHR’s by physician offices, whereas an alternative sort of as a surrogate for that is how many facilities, such as inpatient facilities, provide access to information, to physicians offices via their own systems, the results, other type of information that maybe relates to the inpatient stay, or even an outpatient stay, but is relevant and would be useable by the physician in treating the patient in the physicians office. So some type of internet or external access capability.
DR. LUMPKIN: I had a few comments also, I’m next on the list. First of all I think that this is a good way to get the discussion going, it’s very useful. I really thought Jeff’s comments were very productive so I just wanted to second his on using or perhaps linking or enhancing currently the surveys. I did want to make a comment that it may be useful for us to come up with some recommendations perhaps at our next meeting or the November meeting, I don’t believe that quarterly reporting is useful, in fact I think it could be problematic because the precision of the measurement instruments that we’re talking about may not support the kind of measurement process, and if you’re sampling the universe over a period of time in quarters, what you may find out is that the rate of error is greater than the rate of expected rise so that if you have a first quarter is at level A, the second quarter statistically may be the same, but the actual value may be lower then the first quarter, which would not be something that would be conducive to continuing the momentum that we want.
So I think that one of the things that we should recommend as we go through the report on this process would be support from this Committee to move into a minimum of annual reporting and I think we’d be willing to, at least I would be willing to make that recommendation to the Secretary.
The second is is that this set of measures tends to focus in on electronic health record, which is a key component, sort of the heart of anything that we’re talking about in relationship to enhancing the National Health Information Infrastructure, but I think the measures should also try to reach out to other dimensions, even more importantly, the interconnection to interoperability between the dimensions. So issues, ideas that I would think of would be, for instance the number of clinicians who are involved or connected to other clinicians, other electronic health records. I think I remember some report, maybe it was HIMSS or someone, and they commented that there are some five percent of providers currently use some form of electronic health record, whatever that means, but those five percent can’t talk to each other. The percent that can talk to each other is an important measurement activity.
Second would be NEDS implementation as a key component of the population health dimension, whether it be NEDS or the Public Health Information Network, or some other measure of how progress is going in that arena, which despite all the money that’s there I’m not sure we really know how well it’s going.
Another would be for instance immunization registries as a good cross cutting one, that cross cuts between the population health dimension and the health care provider dimension. The use and implementation of integrated return on child health information systems, which has been around in existence for ten years, mainly integrating WIC and well child visits, but how well are they integrated into the overall system, where it leads us.
Electronic lab reporting is another cross cutting area where messages -- for a clinical setting to the public health setting. And then finally whether or not the systems that actually have these implemented I suspect we can get this in the same sort of surveying process that Jeff talked about, of how people who handle electronic systems make it accessible to patients. At one level is we could just measure whatever they did. Obviously the lowest level is just giving them access to certain clinical information. At a higher level would be to what extent do they provide self care electronic support like for diabetics and asthmatics in monitoring their disease.
So those are some ideas to throw out just for consideration as these measures are developed. Steve?
DR. STEINDEL: Thank you John. It’s always nice to be down on the list because a lot of the points are brought up by other people. But one thing I’d like to mention and several people in this room that are also involved with the project, as I mentioned at the last Workgroup meeting, HIMSS has started an NHII workgroup and one of the things they task to that workgroup was also surveys, and unfortunately I opened my mouth at one of the sessions and when you open your mouth you get stuck with something, so I like to term myself as discussion leader of that group, I don’t want to take on the task of being leader of that group. And we’ve been having some active discussions and one of the things that we have observed from those discussions is that there’s really two segments of this population, the NHII population, if you can talk about it that exists. One is that set of the population which Bill has termed in part the local health information infrastructure, but those that are NHII like enabled, and we’d like to know what’s going on with that population, what features of the NHII they have. But they’re also the best of the best, so monitoring that population is not going to give us an indication of how the NHII is moving in the whole population. And there the whole population is the other part of the NHII population, and we have a lot of surveys that are looking at the EHR side of it, that as was pointed out by Jeff we can add a few questions and we could survey what’s going on with NHII like features in that. The problem with those surveys is most of them are proprietary, and getting that information is going to be difficult and we have to figure out a way to do that. So I think the existing surveys can be used in that area but we do have to use some creativity to get there. And finally as John has pointed out, we don’t have good surveys in the other two dimensions, the personal health dimension and the public health dimension. CDC has information on what’s going on in the population health side but I’m not sure of the depth of that yet, I’m researching it, and of course the personal side we haven’t really started to look at in any real depth and we have to start doing that.
DR. ZUBELDIA: I want to expand a little bit on the rapid fire list that John gave you on things that should be part of the survey. One of the comments was the connectivity between the practices and in that area I think you need to break it down into receive only connectivity or true connectivity to interchange data, because I’ve seen that a lot of practices will install an electronic health record of some sort just to receive lab reports from the hospital, or just to connect to the ADT part of the hospital, and then they can’t send anything else, anything to any other practice or receive anything from any other practice, and they cannot, they’re spokes in a hub, and you need to distinguish between the hub and spoke model where the practices out there are passive, and the true NHII active peer interconnections.
The other thing that I think it’s important to look at is the difference between how many providers or how many practices have an electronic health record of some sort and what is the penetration within that practice. Because you probably would find that it’s relatively common to have a practice that adopts one of these electronic health records and then the penetration within the practice will take five years to get to 60 percent. So I think you need to make that distinction and when you look at the proportion of the U.S. population covered you need to look at the proportion of the providers covered and try to find out how to speed up the penetration within the environments where it has already been officially adopted.
MR. HUNGATE: My comments take a little different tack I think in that I want to make sure I have a good fix in my own mind of who the customer is for this set of measures. Is it NCVHS? Is it HHS? Or are we trying to develop a set of measures that are useful in the broad community? The health care system is a huge system, a lot of the work of this is going to happen someplace else, and those someplace else’s have to have their own way of tracking what’s happening in their own sector, and given the magnitude of the system it seems to me that part of what we ought to be thinking about is how do we trigger the rest of the measurement in the system so that we get something that moves at a pace we like. I’m also kind of wondering if we don’t need a measurement approach that would change from the beginning to a year later, and two years later, in that I suspect that issues of privacy and security, the various standards, I think there are a lot of things that are still holding up implementation or people’s decisions to really go ahead and you have to deal with those barriers early. And so some way of tracking whether the barriers are getting removed, like the SNOMED decision, ICD-9 to ICD-10 transition, it seems to me there are a lot of very specific things that have been identified in this discussion in the broader committee that are pre-conditions for a lot of the other things, and that there ought to be an early measurement set adopted to that need. So that’s my suggestion/comment.
DR. LUMPKIN: Marjorie?
MS. GREENBERG: Well, as Steve pointed out, it’s a benefit of having heard the rest of you, and my main comment was going to be what John had said about that this is focused very much on the one dimension of the NHII and I think we need to bring in the other dimensions, and I think you laid out a number of possibilities there. What Bob said even triggered me thinking further about, of course at the end of the day what we’re trying to improve is health outcomes and reducing patient errors and medical errors and all of these things. I certainly don’t think we can report on that on a quarterly basis, or even on an annual basis, but if there were some way to link at least conceptually these measures with like the HealthePeople 2010 measures, which I just think it’s worth thinking about, I mean I’m not immediately able to tell you how but down the road it would be a concern if we were really making progress in the health information infrastructure but we weren’t making progress in that are, I mean there should be some linkage and I think maybe conceptually more than specifically. On the issue of quarterly versus annual and all that it’s kind of between you and your boss I guess except I think you can do it both ways, I mean obviously qualitative reports, quarterly, and I think even the Subcommittee would be interested, or the Workgroup and the full Committee, what’s being done quarterly but statistically to do anything less than annually would be a mistake.
DR. YASNOFF: I don’t think that there’s necessarily a dichotomy between quarterly reports and measuring these kinds of measures on an annual basis.
DR. LUMPKIN: I have a request for three very quick reports because it’s time for us to take our scheduled break. We’ll go Mary Jo, Eduardo and then Bob and then we’ll cut it off. I think that what we would like to suggest just sort of as a process, I don’t believe that this session was meant to be a final resolution but more beginning with iterative process and obviously the Workgroup would like to continue to participate in that. So I’m not necessarily going to ask you to respond to whether or not you think ours are good ideas, I think we just throw them into the pot then obviously you’re going to have to take them out -- elsewhere.
DR. YASNOFF: If the Workgroup has recommendations about how the process should continue in terms of these measures I’d like to hear suggested next steps as well.
MS. GREENBERG: Can I just say one other thing? I do have a middle --
DR. LUMPKIN: Well, I’m going to put you after the other people who were here.
DR. DEERING: Well, there is a stages of change model and since what we’re talking about here is change and the first stage of change is awareness and then readiness for change, and I guess I would suggest it in the consumer area especially it could be a useful proxy in the first years or two to measure awareness and readiness to change toward adoption of the NHII and possibly even in a few other areas.
DR. LUMPKIN: And my guess would either be CDC or the National Center for Health Statistics, both are engaged in an ongoing phone survey of the public and insertion of one question in either the Risk Factor Survey or the SLATES(?) would be one way to collect the data. Eduardo?
DR. ORTIZ: The comment I was just going to make is on top of the challenges, of course, once we get these measures in place as you know one of the big challenges is going to be how do you collect this information accurately, completely, etc. Just one of the suggestions I thought that might be useful is in terms of the home dimension perspective or patients or consumers, whether or not there’s an opportunity to leverage the MEPS(?) Data Survey that AHRQ collects, it’s a longitudinal survey, nationally representative sample that continually goes on and on and on where we collect in depth information on clinical issues, insurance status, etc., that may be something that we could add that on to the MEPS survey, you could end up getting information on percentage of patients who have online access to their providers, percentage of patients who have access to their medical records, things like that. That may be a way to do this, it’s ongoing, it’s been very successful, and I would recommend that we look into that.
MR. HUNGATE: My comment is quick, what you measure can be a big part of what the incentives are also. What you get measured --
MS. GREENBERG: I was just recalling that meeting in December, the kind of launching meeting that you had, and I remember we kind of brainstormed at the end of that meeting about how will we know when we’re there, and I don’t know if I’ve ever seen that kind of summarized anywhere but it would be worth going back and looking at that and seeing if there was anything in there that would be useful.
DR. YASNOFF: We actually did that in preparing this, and I’d be happy to share any or all of that with you or with the whole Committee. I think that there were a lot of interesting ideas from that brainstorming but it was relatively unfocused and so I think that’s one of the reasons it became clear that you need to start with a document in order to really engage the ideas. I should also mention that one of the goals here, we don’t want to measure every single thing we could possibly think of to measure, but we would like to have a representative set of measures that have the characteristic of completeness so that if all these measures reach all the desired values there’s a high likelihood that we would essentially be done. That’s one of the assumptions behind this and maybe that’s not a realistic way to proceed but that’s what we’re thinking about.
DR. LUMPKIN: And I would just like to add that another set of measures is to, particularly within the process, that there are people who are willing to see that their marbles are in play, and to the extent that a measure of this continues to involve the inclusiveness that we want to engage in the NHII process both within the Department and other agencies, measures that may specifically relate to the interest of key players would be important.
DR. YASNOFF: I think one of the things that might be worth considering is when we have, when we’re a little further a long in the process that it could be potentially very helpful to have hearings where we bring in the various stakeholders and let them comment on the measures to deal with exactly that issue, whether each stakeholder group feels that they’re interest in this is represented appropriately by the measures and furthermore whether the progress that they make would be reflected in the measures as proposed.
DR. LUMPKIN: And just as an addition to that and I think that we probably as a Committee would be happy to do that, as a Workgroup to do that, that hearing process, I would also encourage the use of both the CHI and the Data Council as a way to generate some of those measures also before we go to the actual agreement outside the agency.
Well, thank you, this has been I thought a very good discussion and we will now proceed to take a break, we will then hear from our panel at lunch and then we will have it on the personal health dimension.
[Brief break.]
DR. LUMPKIN: The next item is the letter that I’ll go ahead and replace. There are a number of iterations that we have to play around and Suzie is very nice --. I will read through it very quickly for those who are on the internet.
Dear Secretary Thompson:
The National Committee on Vital and Health Statistics commends your dedicated leadership to enhance the nation’s health care delivery system with information technology. Your vision aptly identified the need for a comprehensive National Health Information Infrastructure to assure quality health care to all Americans. Much progress has been made through initiatives led by your Department, such as Consolidated Health Informatics Initiative, the licensing agreements with the College of American Pathologists for SNOMED, the recently concluded NHII 2003 Conference and the appointment of a Senior Advisor on the NHII.
In a recent hearing before the NCVHS NHII Workgroup on January 27th, we heard about internet technology from several expert testifiers in the private and public healthcare sectors. We were told that the present internet, a vital technical component of the NHII, will reach capacity within a decade. We also learned about several federal research projects underway that are vital to the development of a coordinated, comprehensive NHII. One such interagency program is the Networking and Information Technology Research & Development Program, a $2 billion federal program, partially funded by NIH and AHRQ. Other research is underway involving the Department of Defense, Department of Energy, and the National Science Foundation to deploy vital networking technologies on the internet and the Next Generation Internet, NGI. These technologies can enable healthcare applications such as medical consultation at a distance, surgical simulation, and essential collaboration among clinicians and researchers and facilitate the migration of care into the home.
These research initiatives, which develop and deploy the leading edge in networking information infrastructures, can be vital in addressing the complexities in implementing an NHII. Based on the information we heard, the health care community needs a larger cadre of researchers and practitioners who understand health, computing and communications. As the principal health agency, HHS should extend its involvement in these increasingly vital research, development and planning activities. We were reminded that HHS played a lead role in the early 1990’s when the National Library of Medicine led the federal High Performance Computing and Communications initiative. NLM has been instrumental in bringing some other HHS agencies to the table, providing a good foundation on which to build.
To ensure that the requirements of the health system are adequately represented, the NCVHS recommends the Department increase the participation of HHS agencies in federal interagency IT research and development initiatives that are working to advance a national networking information infrastructure. Several approaches might be productive, such as establishing a new coordinating officer or designating an existing agency to develop and oversee a coordinating plan. Regardless of the approach HHS chooses, the Committee recommends that you personally indicate your support for this participation in the strongest terms. As other federal agencies have observed, we anticipate this activity will result in optimization of research and development efforts to meet the needs of the NHII and possible system operational savings.
Signed Sincerely.
Hopefully we can work through it, are there any comments or, the action is is that if we like this letter we’ll send it forward to the full Committee for consideration in September.
DR. HARDING: Just one minor comment. On the third line of the first paragraph could we say your vision clarified as opposed to identified? I think that this was going on even before the start of this Administration, just that minor --
DR. LUMPKIN: That sounds good.
DR. HARDING: Thank you.
DR. LUMPKIN: Anything else?
DR. SHORTLIFFE: I saw an earlier version of this and I think that there was an effort to be a little more clear about the discrepancy between HHS involvement and other agency involvement. Now maybe there are reasons that we want to remove such statements about such discrepancy from this letter but I actually believe it’s an important issue. If I look at this, this makes it sound like we’ve been sort of involved all along and playing a role, there’s some NIH and AHRQ money and NITRD and NLM was involved in the early days of HPCC and so forth. But the fact is this engine has been being driven by other agencies and this doesn’t say that and say that this is the time to make a significant change. The earlier versions of the letter said that more clearly and I’m just concerned that we’ve sort of watered down what I view is the key point that ought to be driven home.
DR. ZUBELDIA: In support of that it’s ironic to notice that CMS does not allow the use of the internet for the HIPAA transactions. You cannot send Medicare information over the internet, they won’t authorize it anymore.
DR. SHORTLIFFE: There are many such examples, but just the historical involvement that’s been so different.
DR. LUMPKIN: Is there a particular language which captured the entire letter or that you might want to suggest?
DR. SHORTLIFFE: Someone has given me the older version. We had a line in here that says, HHS has generally been less involved than some other federal agencies in these research, development and planning activities related to the internet and related technologies. Accordingly, to ensure that the requirements of the health system are adequately represented, the NCVHS recognizes the need for the Department to increase its participation in federal interagency research initiatives that are working to advance a national networking information infrastructure. Now that sentence I still believe and I don’t know why it was removed.
DR. LUMPKIN: Most of it is there but --
DR. SHORTLIFFE: Well, I don’t think it’s quite as clearly stated as to what the issue was.
DR. LUMPKIN: If you could just hand me that. The current document reads, I’ll read that paragraph:
The research initiatives which develop and deploy the leading edge in networking information infrastructures, can be vital in addressing the complexities in implementing an NHII. Based on the information we heard, the health care community needs a larger cadre of researchers and practitioners who understand health, computing and communications. HHS has generally been less involved then some other federal agencies in these research, development and planning activities related to internet and related technologies.
DR. SHORTLIFFE: Then there’s a sentence after that.
DR. LUMPKIN: “As the principal health agency HHS should extend its involvement in these increasingly vital research, development and planning activities.” It just takes that one sentence and inserts it right there in the document.
DR. SHORTLIFFE: Along the same lines, we make it sound in the previous paragraph as though the NITR&D activity as sort of has full partner participation by NIH and AHRQ, maybe I’ve already commented on this, but I believe that the actual investment from health related agencies in that overall program is minute compared to the overall program. I mean this makes it sound like we’re right up there along with the Department of Defense and Commerce and NSF and so forth and that just hasn’t been the case.
PARTICIPANT: I was going to actually ask where is all that money?
DR. SHORTLIFFE: It’s a small percentage of the overall --
DR. LUMPKIN: So one such interagency program is the Networking and Information Technology Research & Development Program, a $2 billion dollar program.
DR. DEERING: And we could add if you wished, HHS involvement in this program has been relatively minor.
DR. SHORTLIFFE: Or you could give the amount out of the $2 billion and, $309 million out of $2 billion. That’s actually not minute if that’s true. How is that split between NIH and AHRQ? $300 and $9 million for AHRQ. So $300 million is across all the NIH Institutes. That’s more than I thought.
DR. LUMPKIN: So I actually it may be appropriate to say partially funded by NIH, $309 ranks in my book actually.
DR. SHORTLIFFE: I agree, I’m surprised by that number.
DR. LUMPKIN: Ok, we’ll leave that. Any other comments? Is there a motion to move this letter to the Full Committee as amended?
DR. MCDONALD: So moved.
DR. COHN: Second.
DR. LUMPKIN: It’s been moved and seconded. Is there further discussion? All those in favor signifying by saying aye.
WORKGROUP: Aye.
DR. LUMPKIN: Opposed say nay? Any abstentions? Ok. Thank you.
(Motion carries.)
DR. LUMPKIN: Now we’re going to proceed to the panel discussion. We have four panelists, Mark may be on the speaker phone, Mark you there? Mark are you on the speaker phone? Mark, say here.
DR. OVERHAGE: Here.
DR. LUMPKIN: Great. Ok, we’re going to start off, we’re going to ask the panel to introduce themselves and beginning with John who wasn’t here, if you would just introduce yourself and your affiliations and then we’ll proceed with the panel. Why don’t we start out with the person I’m pointing too but Mark you can’t tell because I’m pointing at you, so you start off.
DR. OVERHAGE: Thank you and I’m sorry it’s a little bit hard to hear sometimes on the speaker phone. I’m Mark Overhage, I’m a Associate Professor of Medicine at the Indiana University School of Medicine and an investigator at the Regenstrief Institute.
DR. LUMPKIN: Mark? It might get a little bit easier and just sort of as an experiment, if you’re sitting at your desk to listen through the internet, it’s delayed, never mind.
DR. OVERHAGE: I tried. Thank you.
DR. LUMPKIN: Ed?
DR. HAMMOND: My name is Ed Hammond and the activities that I have that relate to what I’m talking about, I am president of the American Medical Informatics Association, I’m the vice chair of the Technical Steering Committee of HL-7, I’m a member of the IOM Patient Safety Task Force, and I’m at Duke University and my research for 35 years has been involved with the electronic health record.
DR. LANSKY: David Lansky from the Foundation for Accountability. I also recently chaired a task force on personal health for the Markle Connecting For Health Initiative.
DR. ROTHER: And good morning, I’m John Rother, I’m the policy director at AARP, and I’m also a member of the Board of the National Quality Forum.
DR. LUMPKIN: Thank you very much. We’ll start off then with David.
Agenda Item: Panel - Personal Health Dimension - Dr. Lansky
DR. LANSKY: Thank you, John. Thank you all for letting me come back and join you. I was here some months ago and did a preview I think of the work we were hoping to accomplish under the auspices of the Markle Connecting for Health Task Force. And I want to just talk about two or three conclusions we came to, I think our hope this morning is only to put a few things on the table and then leave primarily our time for discussion so I’ll try to do that. And first of all I have to compliment all of you for the leadership you’ve shown in articulating the NHII and championing it so that people like me and the organizations I’m working with can begin to understand the transformative potential of what we’re talking about, particularly your emphasis on the personal health dimension I think is unique and the fact that you propose it to be so tightly integrated with the other dimensions is also a real breakthrough. To me the challenge we have is in thinking about the transformative power of the NHII in the health care system for the benefit of people, the patients. And part of that is as we look at the personal health dimension to recognize that we are looking at the patient or the person as a not only partner in their care but as a participant in their health, and that we are looking to enable information to be supplied to be that person and supplied from that person to fully engage the health care system as well as the other resources that can help them.
There are three things I want to just mention I think as we try to think about the shift from the patient as a passive, dependent recipient of health care services and a person from whom information is collected, about whom information is collected, in essentially a one way process to a complete information partner in the personal health dimension. The three things I want to talk about quickly are what do we know about public awareness and public perceptions of health information, and I think particularly speaking to the issue you’ve all raised this morning, how do we consider the opportunity to mobilize the public as participants in this transformative NHII process.
Secondly, the issue I think Bill raised in his comments, the disconnect between the investors, those who may enable the NHII to come into being, and the beneficiaries of the infrastructure development. And thirdly, what’s the role of the public voice in driving change. Let me just talk to those three things quickly.
The first one, what do we know about public opinion, we did do a survey for the Markle Project and there is both a short report I hope you’ve all seen and a longer report coming out in the next week or so that I’ll be happy to make sure is available to the Committee, which summarizes some of the results. We did a survey of about 1200 online Americans, it was actually a quite representative demographic sample of the population as a whole, as well as the online population, and we asked a number of questions about what they understand in this arena. First I just want to mention some of the highlights in terms of what people think the benefits of a personal health system, information system would be.
Seventy-one percent of people said it would help me understand my doctor’s instructions. When people leave the doctor’s office they don’t quite know what to do. This would be a support system for them in expanding on the encounter. 65 percent of people said it would prevent medical mistakes. That’s astonishing to me that 65 percent of the public already understands potential impact of having online health records in reducing error. Sixty-four percent said it would give me more control over my care, 62 percent said it would help me ask better questions when I’m seeking care, and 60 percent said it would help me take care of myself. So I think given how new we are in this arena, how relatively undiscussed this is in the broad public debate, this is tremendously reinforcing sign that there’s a latency receptivity toward this I think as Mary Jo suggested earlier.
We certainly, we try to understand what specific benefits people thought they would use, what features they would use of this elaborated personal health infrastructure. 75 percent of people who are already online said that they would email their doctor if that capability existed. 69 percent would track their immunization history in their family. 69 percent would like to look for mistakes in their record. 65 percent would use it to send information to new doctors. And 63 percent would look at their own test results. So we have roughly two thirds of the population, online population, let me qualify that again, saying that they are ready to take advantage of these specific services. Now when you ask the public would you like your medical records online they will generally say no, about 60 to 65 percent of the public is fearful of simply putting my medical records online, that concept stated brutally is not comfortable for people. But when you ask about these specific features and benefits they want them, so part of our challenge as communicators is to help people understand the relationship between getting specific benefits they’d like to receive and building an infrastructure which enables that to take place. And of course all the protections of privacy and so on that would have to come with it.
I do want to mention about the privacy issues, 91 percent of people say they are very concerned about privacy of the online information environment, so we absolutely have to deal with that. However, only about a quarter of people in our survey said that that would a barrier to using their online medical record. So again when you pose specific features between 60 and 62 percent of the public say well, I wouldn’t do that online because of concerns about the online privacy and security environment. But 75 percent or so of the public says they are comfortable proceeding. In focus groups we found a tremendous confidence in the technologist, people basically think they’re doing it with my travel, they’re doing it with my banking, they’ve already figured out how to protect information, the health care people will figure it out, too, so there’s not a need to understand the depth of it, there’s a confidence that we can solve that problem.
The last thing I’d mention about the survey is we generally found that people who are sicker, people who are care givers, people who are active users of health care, are more likely to want these online service, the PHI, the personal health benefits. That may be somewhat counterintuitive, they may have more risk but they realize they have more to gain. So the early adopters are likely to be the frequent health care users and those who are especially facing chronic illness or caring for a family member.
The second general point I wanted to talk about very briefly was this point about who’s investing in it. I think in our workgroup we quickly discovered what you’ve all talked about at length, in order to enable this set of features I just talked about to be available to the general public the industry, the providers, the institutions, have to invest in building up the infrastructure, including the electronic health record at the provider level. Obviously there are many challenges to doing that. We heard quite clearly in our discussions that to the extent there’s a business advantage in a health care organization building its EMR, perhaps secondarily providing patient gateway access to that EMR, there is virtually zero perceived advantage in interoperability with competitors in the same community. So that to say we’re going to build out an LHII, which is going to enable free transfer not only of information but of people and their records with competitors, if I’m going to spend a couple billion dollars building out an electronic infrastructure for my organization why would I give away that asset essentially to my competitors. And so in competitive health care markets I think this is an enormous challenge, convincing those controlling the investment of funds to invest in the community architecture strikes us as a very daunting problem.
And the third thing just to wrap up, we are, we’ve come to believe for the reason I just mentioned that the public is ready but the public voice is not driving the investment and infrastructure development climate. Therefore, we need collectively in this field to mobilize the general public as advocates on behalf of this kind of change. And there is a disconnect in the public mind, the only trusted host of a personal health record in our survey is my doctor, so to the extent we continue to encounter this highly fragmented and sort of dyadic system of perceived relationships which are very traditional, the Marcus Welby relationship, yet we want to build out an infrastructure, a community and policy environment which is broader, we have to somehow create advocates among the general public who understand that broader approach.
We will be with the support of the Markle Foundation hosting a conference in late October of advocacy and patient and consumer advocacy organizations. The steering committee includes Mary Jo and we hope to have DHHS represented in the process. AARP is represented in the process. National Health Council, which includes many of the large voluntary health agencies is participating with us. The AFL-CIO labor unions are participating with us. VA is participating. Families USA is participating. So our hope is to get a fairly broad group of prestigious and influential consumer and patient groups in a room and have them understand some of these issues and just begin that dialogue of engaging them as leaders and advocates for this process.
I’ll stop there. Thank you.
DR. LUMPKIN: Ok, thanks. Ed?
Agenda Item: Panel - Personal Health Dimension - Dr. Hammond
DR. HAMMOND: Thank you. I’m going to talk about the IOM and the HL-7 electronic health record model of the project. As has already been noted HHS commissioned or encouraged IOM and HL-7 to create EHR functional standards, and I think it’s important to point out that in both cases what I mean by functional standards is the kind of thing that needs to be done without getting into any of the implementation issues. And I what I want to talk about is just some very brief bullets to set the stage a little bit about this process but very quickly I want to focus in on the personal health record. And then a comment that I wanted to make is David and I just participated three weeks ago in a meeting in the UK in which we discussed the details of a plan that would completely introduce the electronic health record in its three views of institutional, population, and personal health record over the next seven years, with a committed expenditure of about $11 billion dollars. And if we weren’t on the internet I would suggest that we might adopt a thing to beat the Brits, but since we are on the internet I think we should say that we should have a theme of keeping up with the Brits because I do think that this is a real challenge for us to find out how serious we are about this in moving down to that.
HHS really incentivized largely by CMS program to incentivize the use of the electronic health record and other things as part of an improvement in quality, and using the standard, ANSI standard making capability of HL-7 as an SDO, at the same time commissioned both of these groups to create this core set of functionality. Fortunately the IOM had a patient safety task force that had some very common kinds of themes and they were able to integrate this activity into IOM and HL-7 had committed to the electronic health record in 2000, changed its mission statement, and electronic health record special interest group that was position to undertake this work as well.
The sites that were identified by both groups involved hospitals and interchangeably the word inpatient, ambulatory care, and the word interchangeably outpatient, nursing homes without distinguishing variations of nursing homes itself, IOM picked personal health as the last domain, HL-7 added to that the area of community care and looking ahead at the output from this I think is rather interesting is that clearly community care is a lot more like the inpatient ambulatory world then it is like personal health world, I think that will be one of the distinctions that will come out of this.
The IOM categories, and again this was a result of simply looking at functionality, going back with a process that groups those, and then grouping it one higher level, so these are the categories that IOM came up with to introduce the functionality. Health information and data, results management, order entry management, decision support, electronic communications and connectivity, patient support, administrative processes, reporting and population health management. The HL-7 activities used those but added a few more to that. IOM introduced 32 second level functional requirements so in a sense they have 32 functional requirements that came out of the IOM effort. There are some subsetting of that effort that was introduced. The HL-7 activities basically used the IOM recommendations, filled in a few gaps, and that is the normative on the standard part of the current document that is out and available.
There is an email that Mary Jo has passed around that explains the balloting process coming out of HL-7. IOM released its letter defining those core capabilities on July the 31st, HL-7 introduced its introductory ballot to this yesterday evening. The HL-7 ballot will be open for 30 days and the other comment that I would make is there has been a collaborative that’s been formed that includes AHIMA, the AMA, AMIA, the ANA, CHIME, eHealth Initiative, HIMSS, and NAHIT, that have created sites around the country. The reason I want to make this comment is in just a little bit over two weeks we had to cap the attendance at these at somewhere around 850 to 900 people, so again I think that was impressive in terms of the commitment of what’s happening here.
The HL-7 ballot does have a normative ballot which is a draft standard for trial use. This doesn’t have the same clout of a standard, it’s a standard that can exist for a maximum of two years and must exist for a maximum of six months, so somewhere between six months and two years, and it also is less stringent in terms of a consensus approval, 60 percent versus 90 percent. The HL-7 approach defined items in terms of essential and desirable, IOM defined things in terms of a date, they put groups in three phases and basically starting 2004/2005 the things that should exist in that grouping, and then 2006/2007 and then beyond 2007 is the way in which that was done without doing that.
HL-7 also introduced a triplet as a management tool that I think is useful that includes a functional statement, what it is you’re talking about, a rationale of why that’s necessary, and then a conformance criteria of how you evaluate or determine whether somebody is compliant, conforms with that criteria.
Just very briefly, the kind of data elements that we’re talking about, now I’m moving specifically also into the area of the personal health record of the personal health domain. Demographics without defining those contents, medical problems, laboratory data, vital signs, current/past medications, immunizations, allergies, providers, encounters, procedures, radiology, the level of service, health and maintenance and advanced directives. One of the things that I think is interesting in looking across the site of care is that essentially the personal health record requires the same functionalities that the hospital requires, that the ambulatory requires, that the nursing home requires, except for those functionalities that are directly related to a service, such as order or things of that nature. So I was impressed to really find out that the differences in the personal health record as it turned out by looking at the functionalities is very common and in truth if you look at the data set of the personal health record it is essentially the same data set that is in the other groups itself.
Now this is sort of my picture of what the personal health record looks like, and I actually did this before we saw the HL-7 output. So the green things sort of come from the person, him or herself, the purple things come from the clinical system and it’s difficult maybe to see that but the specialists and clinics, inpatient, pharmacy, dental, and then the physician email with the patient. The light green things come from the internet activity itself, and then the decision support algorithm is sort of floating in here because it really does encompass all the other kinds of things and if I were complete I’d also have an education box up there as well in family education and the things that we’re talking about.
So looking at the standards that were produced both by the IOM and from HL-7 essentially every box up there covers what is recommending in the standards that are involved with patient care. Now there are another set of standards that involve the infrastructure itself which in a sense is a computer science part of what we’re doing.
And then finally the last slide that I would like to do is the fact that I think that we’re in for an interesting round of discussions as we move this activity forward. For about the last two to three years every group that has tried to come up with a definition of the electronic health record, and an electronic health record system, has spent multiple hours without closing that definition. And I think one of the problems is the fact that there is no existing terminology that is common across the board that permits us to discuss the issue itself. The words that we use mean different things to different people, even NHII probably means something different between the two of us because I don’t include the electronic health record itself, that’s an assumed existence on my part, so when I talk about NHII I’m assuming that existence. But I think your model of that includes that within that, but that’s part of the problem that we’re talking about.
For some people the EHRS is everything that involves IT. For other people it’s a very, very narrow set, I mean people argue that an appointment system is not part of an electronic health record system, that ADT is not part of that, and you’re at the two extremes and until we begin to understand, and my comment is if it’s not part of that then that’s ok with me but you have to name what it is part of. So somehow, and if you just go back and look at what we’ve called this thing over the last 30 years, from AMR to CPR and all those kinds of variations, give us an idea of what that is about.
It was very interesting to participate in both the exercise in the IOM, which consisted largely of health care providers, primarily physicians, and academic based, and then going to the HL-7 activity, which the vendors was the primary participants in this, government interestingly enough were second, organizations such as the collaborative that I’ve named and others were third, providers, in that stretched imagination was next, and finally consultants after that. So I think that one of the gaps that we’ve got to close is this community that is very, very widespread and bringing that together.
So the documentation issues and I think one of the things that we’ll find very interesting will be as the HL-7 document goes out, looking an awful lot like a technical geek standard to providers that are directly involved in health care who I’m afraid will take one look at it because there are information requirements in here as well, so it’s a huge document, so overwhelming that I’m very, very nervous that nobody will look beyond a cover and throw up their hands.
So somehow part of what we’ve got to do is not only the education but trying to get this back in terms, it almost takes three hours to figure out what you’re voting on so I think there are clearly some issues here that really do need to be fixed, we need to keep it simple at this round and I think that the good news for this, though, is I think as we’re beginning to get into this level of detail the debates for this is going to enhance the progress of the personal health record and we really are going to find out that it is a major player and probably would not have said so three years ago but I’m becoming convinced that it will be inclusive of most of the other health care records as well as something added to that.
Thank you.
DR. LUMPKIN: Thank you. John?
Agenda Item: Panel - Personal Health Dimension - Dr. Rother
MR. ROTHER: Well, good morning, and let me also add my congratulations to this group for your leadership and I want to second David’s remarks in particular from a consumer point of view about the potential of this kind of technology to transform the experience of medical care and indeed health in this country. My remarks are going to be fairly general.
We strongly believe that many patients, not all yet but many, desire to be a more active partner in their health care and are overwhelmed today with all of the information that’s available but not personal --
MR. BLAIR: Could the individual who’s talking get closer to the microphone please?
DR. ROTHER: I’m happy to do that Marc. We strongly believe that there was a need to be more personal in the way that we translate health information to the consumer. An individual health record or personal health record is the key to doing that. And has David has already reviewed there are several concerned that consumers bring to this that have to be addressed around privacy, around who controls, and about how information is assembled. But nonetheless I think if we can agree on a set --
MR. BLAIR: Excuse me, I guess that was not the problem, maybe it’s that the telephone needs to be moved closer to the speaker.
DR. ROTHER: I’m nowhere near a telephone. Ok, I think we figured out how to do this then. I’ll just make a few points. The first point is there’s a lot to learn from looking at the experience abroad, where electronic medical record use is relatively speaking much greater, much more advanced then in the United States. The second point is that although the common perception is that older people are not as active online as younger people are that’s not true when it comes to health information and using the internet as a tool to help health care, there’s a strong interest among older people, it’s the most rapidly growing segment of the population in terms of online use, much of it focused on health care and health care information.
We want a personal health record not just to be a locus of information, the third point is that it really needs to translate to decision support for the individual, I believe that that’s really key to making this relevant and frequently used, otherwise it’s just the equivalent of a file drawer, so translating this information into behavior, into what do I need to ask my doctor, when do I need to see my doctor, what steps do I need to take, is really absolutely key, so it’s not just information it’s translation.
We think that there are major opportunities to improve quality through a personal health record, to improve communication with a physician, decision support as I mentioned, and we also think mirroring David’s earlier remarks that the first and earliest population that will have a strong interest in this will be the chronically ill, and there’s tremendous opportunities and tremendous need to enable and to empower that population with better support.
There are obviously concerns, privacy is a very serious concern, but I think cost may be the ultimate concern for the system. And here I think as David already mentioned there’s not a likelihood that the private sector on its own is going to be able to do this, this is a clear area of need for leadership from HHS, from the federal government, in terms not only of setting standards, but also in terms of developing financial mechanisms to promote investment, so we don’t have any particular preferences to how but I think if there were ever a case for a Hill Burten(?) type of reinvestment in health care this would be it. And I think seniors and I believe many people in Congress would support additional resources directed to this because of the promise of the payoff. And because we recognize also that it’s not just going to happen on its own without that leadership.
So first we have to make sure we all agree as to what it is we want and we have to design a system with common sets of standards, we have to make sure that it can be relevant to the individual in terms of their personal use and decision support, and then we need to come up with a way to pay for this. It’s a tall agenda but also given the obvious potential that personal records have to change health care and almost all for the better we think it should be an urgent agenda and one that we’d be very pleased to be supportive of in any way we could at AARP, and I say that in all seriousness, this is something that we intend to make a major priority in terms not only of our advocacy but in terms of helping our members understand the benefit of personally participating in this kind of health care management.
DR. LUMPKIN: Now we’re going to go back to Marc, we’re going to, Marc you may not know this but we’re actually in the process of moving you back to the microphone. We’ve discovered the technique of allowing you to hear better but we haven’t quite discovered the technique allowing you to speak better at the same time. So Marc.
Agenda Item: Panel - Personal Health Dimension - Dr. Overhage
DR. OVERHAGE: Thank you. I appreciate the opportunity to talk to the Committee today and I have a few things, my colleagues remarks which covered a lot of ground, and that is first of all I’d like to emphasize that the personal health dimension is broader than the personal health record. We often end upocusing on that and in fact that’s probably the most challenging piece of the personal health dimension to tackle. There are a few, one or two kind of other aspects of the personal health dimension that I think we’ve got to keep in mind, and the first is access and availability and John -- that understandable health information and content for the patients, particularly important because patients are going to the internet, they are going to other information sources, and they need to be able to identify what are the core data, what is up to date, what applies to them, and again John made this point, and is this information is really -- for improving patient/provider communication and shared decision making and is a critical component of personal health dimension that often gets left out.
The second thing besides the personal health record, which I’ve got a couple of observations I’d like to make about is communication with the provider -- or online or email communication with a provider -- critical component of this dimension because without that there are really opportunity for misunderstanding and misinterpretation and harm on the patient part, they read the medication -- more probably -- stop taking the medication which -- making that communication readily available and accessible is the second challenge of the personal health dimension.
Turning to personal health record for a moment, I find it a challenging topic. First there’s a clear -- contribution that can be made from a personal health record, -- capture day to day date if you will, functional data, use of over the counter medications or herbal remedy. Use of alternative medicine providers perhaps, or blood glucose in a diabetic might all be useful information for the patient’s care. The record may bring increased portability and flexibility for the patient to change their providers when they feel like they want to and not be imprisoned by the availability or access to their data.
And probably one of the most commonly thought of benefits is the potential for the patient to have true control of their record, although I think that’s a bit of a myth in that the only way to have complete control of a record is if that really, the only copy of the data and then you run into other issues about availability and access and so on that may get an impact.
And probably the most important contribution I think that the personal health record is engaging the patient in their care more actively, making them an active consumer, active participant in the decision making, in management, and in the treatment of their illnesses or maintenance of their health. So I think that goes along with the comments we heard earlier about the people who have chronic illnesses, there are those that are most commonly going to use this kind of a resource.
On the flip side there are clear challenges associated with the personal health record. Availability is a key issue, the fact that a personal health record -- controlled by the patient may not be available, may not be able to be made available to a provider who’s not physically with the patient and there’s some interesting technologic challenges there. A related issue is that of updated data. While you might be using the internet, the main issue of access may help with that, it also increases the privacy exposure and emphasizes the authentication problems that go along with updating this kind of information remotely --
Third is the need for a uniform vocabulary and data model, some speakers have in particular emphasized that those really end up looking a lot like any other health record and I fully agree and we need to make sure we follow the same vocabulary and data model for the personal health record as we do for the providers health record. And then obviously the technical issues in terms of access, merging, and viewing data.
The last challenge comes back to where some of the benefits potentially are access day to day, recording of data --, increasing engagement of the patient in the care, but the flip side of that is trying to integrate, bring that information into a context that the provider can use it and is reimbursed for the time that it requires to either in -- when they’re not actually seeing the patient or even during a face to face patient encounter -- that information, to have it presented and adjusted in a way that they can officially incorporate into the discussion the physician -- or the patient.
I appreciate your attention and look forward to a discussion.
DR. LUMPKIN: Great. I’d like to thank the speakers for a very interesting opening statements. The intent of this particular discussion is really to be a conversation with the ultimate goal is that we as a Workgroup will be able to set our agenda for addressing the personal health dimension, to be able to make additional recommendations to the Department. I’d like to perhaps share a couple of stories and then we’re going to break for a very brief lunch, I would encourage people to go upstairs to the cafeteria and bring it down with them so we can get started again at 12:15. Our invitees were kind enough to agree to stay for the most important part we believe, which is the conversation.
I just moved to Princeton area, I went to see my --, it’s time, I’m of the age where I need to have regular check-ups, and the interesting comment I had from my personal physician is that he could not email the results of my lab tests because the hospital lawyer forbids it. We have a lot of obstacles to overcome but I think that we all recognize that the real potential benefits of this system are huge. And at the Markle Connected for Health roll out on June 5th there was a presentation, I forget the gentlemen’s name, who talked about his daughter who had leukemia, and he began to collect all the medical records because of the fact that he would go to one place and the doctor wouldn’t have it, or they wouldn’t have all the information they needed. He began to put it in three ring binders, and at one point there was a lot of resistance but after he overcame the resistance they were allowing him to have copies of the medical records, it got to the point where the clinicians would say ok, give me the book, and they would be relying more upon this gentlemen’s collection of records because they were more accurate then anything they could get their hands on. And the comment that the clinicians made to him was I wish more of my patients would do this, never thinking the inconsistencies, sort of the problems of making those kind of statements and what they implied about what our system. So I think that we can think about the incredible differences we’ll have in making the patient an equal partner in the health care delivery system.
And with that why don’t we take a break for lunch and when we get back we’re going to start addressing some of these issues and we appreciate the willingness of the panel to help us formulate our actual milestones. We’re going to be back in exactly half an hour. Thank you.
[Whereupon, at 11:45 a.m., the meeting was recessed, to reconvene at 12:25 p.m., the same afternoon, August 7, 2003.]
DR. LUMPKIN: Let’s convene. John Rother ask me to convey his regrets, as you know he’s very active in AARP and while he certainly made a very important statement that they think this is very important and are willing to commit resources to it, there’s a small issue that he’s dealing with related to prescription drugs for seniors, somehow or another he seems to think that his organization might think it important that he stay focused on, so he did extend his apologies but we appreciate him joining us.
Why don’t we get sort of started now with the discussion portion of, and maybe I’ll start off with are there any questions of any of the presenters. Before I do that Jeff and Marc can you hear us?
DR. OVERHAGE: Yes, I can hear well.
MR. BLAIR: This is Jeff, I can hear well also.
DR. LUMPKIN: Well, we have this cobbled up system, it is a prime example of how you can make disparate technologies work.
DR. OVERHAGE: Maybe we have smart people in the room.
DR. LUMPKIN: You wouldn’t notice, it’s too ugly to really, when I’ve heard this on the internet, but it is working.
Any questions for the presenters before we get into some of the, try and frame how we’re going to respond, address this issue?
DR. SHORTLIFFE: I have a naïve question, a very quick one for you, it has to do with the election process for HL-7. It seems to me that in trying to prioritize or do a timeline or talk about mandatory or it would be nice, etc., that there are two ways you can make that assessment as one of the voting. You can make that assessment based upon what you really want to see happen and what you think would make a big difference. But you could also, and for members of HL-7 this is reasonable, you could also bring a kind of technical know-how to it about what’s hard and what’s easy, what’s realistic, etc., and I just wondered to what extent you’re asking them to include one or both of those considerations in the voting process, or they’re asking, because I can imagine that what I want and what I really think can happen are two different things and I might vote quite differently depending upon which it is that I’m really being asked to vote. And that would help me understand that the way that the election is going to turn out or the voting is going to turn out.
DR. HAMMOND: I think you’ve hit the nail on the head in terms of the issue and I think up until now essentially the discussions would almost invariably end up in a compromise in most of the version two kinds of standards that we dealt with. I think we moved into version three and I would think particularly as you moved into EHR with a much, much wider body, then you may see it a little more difficult to bring the compromise to get the ballot to move forward. And I think, I was talking with Gary Christopherson during the break here, I think one of the things that we really need to do is to try to convince people that there’s major value particularly since this is a draft standard, not carved in steel, has a chance of revision after six months, that it’s very important to advance this as really putting a stake in the ground and establishing a level, and then going back and fix it. It’s the old good versus perfect, there’s no way that we’re going to get this perfect, and so to the extent that we’ll be able to do that will be the extent we can have side-bar conversations of saying vote yes on the standard, then a specific comment on the pieces of the standard that you have difficulty with and let those be resolved. It will be interesting to see how well that approach works.
DR. ZUBELDIA: I have a question that I don’t know if you have an answer or not, but I remember vaguely that about ten years ago or so HL-7 and X12 had some sort of agreement that HL-7 messages would be for intra-institution communications and for anything outside of the institution would be X12 messages for inter-institution. How does that play, or is that agreement still in effect, or how does it work with the NHII? Because I think it would get in the way of implementing the NHII.
DR. HAMMOND: Actually part of this is a misunderstanding of the memorandum of understanding. HL-7 was positioned as we deal with clinical standards and X12 deals with business and financial standards as a distinction, and we’ve tried to, and so has X12 to be true to that. The reality is claims attachment brought the two groups together in a level that was much more productive than anything else we had done before and there also has, whenever the RIM was first introduced there again was work between X12 and HL-7. The good news is that Sockle(?) now is coming back again, there are renewed relationships now with X12 related to the RIM again, related to some terminology, and related to claims attachments in the terminology associated with that. So I think there’s been reasonable cooperation between the groups. At the same time there’s almost always some competition in anything and everything, two boats going down the same way always compete and so there’s a little bit of that, but for the most part I think that we’re moving in the same direction together.
DR. MCDONALD: Just to clarify, so I think that what you described wasn’t ever the understanding, or at least on both sides. I mean that is it was in and outside because that, for at least ten years there’s been intra-organizational HL-7 messages, commercial laboratories sending stuff, but it was a different division.
DR. ZUBELDIA: That’s the representation that was made, that I remember was made to X12, was the clinical versus administrative was clear, but then also that HL-7 would not have the enveloping mechanism to do inter-organization messages and that’s why the attachment had to be developed with dual syntax because HL-7 had to be put into an X12 envelope. That’s the way it was presented in X12.
DR. HAMMOND: I don’t think this is an issue that we want to get into right now.
DR. MCDONALD: But that’s true, it is an envelope.
DR. STEINDEL: John, I’d like to explore some of the comments that were made and was something that I observed when I looked at the IOM EHR document and as the HL-7/IOM process moved forward and some of the comments that were made by many of the presenters this morning is that there really isn’t that much dissimilarity between the information that’s contained in what we traditionally look at as an EHR, which is generally institutional focused, and what probably should appear in a personal health record and in the personal health dimension. And we also heard in a previous Workgroup meeting when we explored this where we looked at the question of standards for the personal health record, and we heard that they should be very similar to what exists and we heard that repeated again today. And I think that’s something that we probably should explore and we should enunciate very clearly if that’s the consensus of the Workgroup because it shows more of the similarity and more focusing on very specific problems that exist between the two instead of focusing on a broad issue that they’re different.
DR. LANSKY: I appreciate that, I also, I’m not quite as sanguine as Ed is about that particular aspect of it. Looking for example at the EHR functional model that just came out I think at a high level of abstraction it’s true, but I think operationally and in terms of specifications it will be quite new and difficult to build the personal health specification. So I think of things that are uniquely and importantly available, and Marc alluded to them in his comments, people’s actual medication taking behavior is something that will be important to start capturing and not so obvious to me. Reported all the health behaviors, lifestyle, diet, exercise, attributes that are important. Symptoms like pain and functional measures that people might report with angina or orthopedic problems or arthritis. There are going to be a set of aspects that if I’m managing my own health, my wife’s dealing with a skin problem right now, what would be the appropriate way for her to be monitoring and documenting both the condition and its improvement and treatment of it in a way that would enhance the personal health dimension. I just don’t think we’ve really delved, the work I did 15 years ago in outcomes measurement and functional measurement and quality of life measurement we did not feel had a life to it 15 years ago and it’s been steadily perking along, but it hasn’t been brought into this portfolio I don’t think, so I think there will be quite a lot of work to do once we fully do the transformative part of this, not just the give me the gateway into the process measures of clinical care. I think there’s actually a lot of work to be done.
DR. LUMPKIN: Can I maybe follow up on that, because when I heard you say that it’s almost as if I leave my doctor’s office and let’s use the example as a skin rash, and you get a diagnosis, you get a written prescription, and on your prescription which is maybe on a smart card or something like that, let’s look at that and let’s say it’s my personal health smart card. The doc writes the prescription for the medication, which is electronically transmitted to the pharmacy, and prescribes a, for lack of a better term, a module for my personal health record. When I go home either it’s transmitted electronically through the internet or included in my smart card, I then swipe it at home or download it, and then that would be the module that I would use to record my experience with itching and all those sort of things, so it would be a plug in kind of way because obviously you don’t want to recreate the electronic medical record and all its capabilities in everybody’s home. Is that --
DR. HAMMOND: It’s interesting because one of the things in developing the HL-7 is somebody said that occupational medicine needs to be a different site. I think a little bit is the same thing I was talking about, we need a set of terminology which we understand and I think that is very true that the person in their home will be entering data, but it’s the same kind of data formatted with connectivity to the provider as your example, so that’s more of what I mean then a fact if I go to a nephrologist and a dermatologist and a primary care doctor, they put in very different kinds of data but it fits in the same slots in the same boxes that I put together and I think that’s really, really true here, I think that at one level they’re all the same.
MS. GREENBERG: Just carrying this a little further, I mean I think everybody is partly correct, but I think what, well I mean the categories are similar and of course you want to have, I’ve certainly supported common standards but I felt there was almost an oxymoron or disconnect when Marc, is Marc still on by the way? When Marc said A, we’ve got to make this information understandable, and B, we have to use the same standards, and the same vocabulary that we’re using for patient medical record information because I’m not sure those two currently go together or that the terminologies that are being considered anyone has actually evaluated them in any regard as to their, whether they meet the needs of consumers or people trying to understand their own, or document their own health conditions. And I realize that there can be interfaces and there can be translators, etc., so it’s not only the vocabulary but also the issues. So one of my favorite subjects being functional status, we know that functional status is very minimally reported right now in a lot of health records and yet probably consumer or patients are more concerned about their functional status and what they’re diagnosis happens to be or what bacteria they have or all of that. So I think that there are challenges but, Marc do you want to expand on what you said, I guess I’m just wondering how useful a record coded in SNOMED is going to be to the average consumer if SNOMED or MEDSIN or whatever it is.
DR. LUMPKIN: Let me suggest that Marc, that Clem has said that your hand was up.
DR. OVERHAGE: I certainly share your concern that certainly you would not want to put in part of a -- words that are currently imbedded in SNOMED or something like that and the vocabulary imbedded --. On the other hand I think it’s critical that we’re talking about the same thing because if we’re not we’re going to have a problem, so the way that number one, the majority of the information is because percentage wide it would be information that might be in a personal health record, I think a great deal of it does exactly overlap and -- might say it differently but the meaning can be clear because the provider and the patient may use different words -- exactly the same concept. There are some obvious -- patients being asked -- program about whether they have chest pain and spend a lot of time trying to sort it out and it turned out that the patient had been in a car wreck a week before and hit his chest on the steering wheel, of course he had chest pain, which wasn’t at all what the implication of the question was. So I think we do have to have, recognize the differences in how A, you think it would be interpreted, and B, what their emphasis and focus is, but that doesn’t change the underlying I don’t think structure, the kinds of things that have to be captured, and again those are at the margins rather than at the core, in other words the small percentage of the data that are going to be captured in a personal health record that are going to be different in terms of how a patient and a provider might think about -- you’ve have to represent and capture the differences.
DR. STEINDEL: I think several people have picked up on the question that I was going to ask of Ed, and that was he used the word different kinds of data and what I’ve heard people say and what I heard people comment in the last few minutes is that we’re really not looking at different kinds of data between the records, we’re using it at different terminologies used between the different records. And I think there’s a distinction there, and I’m glad you clarified that because we had in our July Workgroup meeting that’s now close to a year ago we did explore the question of consumer health terminology in one of our sessions. And what we heard in that session is that there’s a tremendous amount even in the case of the consumer health terminology, there’s a tremendous amount of overlap in the types of terms, and indeed in a lot of cases the terms that the consumers actually used versus the professionals. And in the area where there isn’t overlap in the exact terms the word that was used today was the concepts are the same and that there’s a high degree of synonymy in the terms that the consumers use and what the professionals use. And that as Marc just said we need to express that to the consumer in the way that they can understand it with the synonymous terms so the medical terms don’t scare them, and so that they can, so that we can communicate with them.
DR. COHN: Well, I think I’m agreeing with many of the previous speakers, being down on the list does give you a chance to agree with people rather than having to make your own comments. First of all I wanted to remind everyone that really what we are talking about is a patient centered view of the world, and so, and at the end of the day the patient has to benefit from all the work that we’re doing. I’m sort of persuaded myself that some of that benefit comes from good communication between the patients’ physician or other health care provider and the patient, and we’ve talked I think some about the benefits related to the physician understanding what the patient is experiencing and having good communication and interaction around that, which of course can be facilitated sometimes by a common terminology, but clearly we have to have lots of synonyms because they’re certainly, I mean even I don’t like to look at LOINC in a native fashion around lab. But the other part of value here would be also the patient understanding on an ongoing basis what the physician is trying to say, and I have, I’ve been a patient many times myself and obviously have family members who are and I know they come out of the doctors visit and you sort of heard about a third of what the physician said, and wouldn’t it be nice to have a system as part of this personal health, provider health record where the information can go to the patient, get translated into a way that maybe the patient, that you can understand, and have it there so that you can remember whatever sage advice the physician has given. Really what I’m trying to get to is I think where Steve Steindel was which is I think there’s, I’m actually reminded that I think we actually were very wise when we talked about a dimension as supposed to a specific record, then we created a graphic where there was a lot of overlap, which is good, and that really maybe the focus here really is to identify what else needs to be there to make it all work. That’s my comment.
DR. SHORTLIFFE: An example that I think might highlight this discussion, and I am largely agreeing with what people have been saying, but I think we need to view this question of the difference between the patient dimension and the physician dimension, for example, as part of what is actually a spectrum, and we have seen some interesting efforts to try to recognize that the record is a different beast to one physician then it is to another physician, and so it’s that presentation process, it’s what you see, what your preferences are, what’s most relevant to you maybe in terms of your specialty. So if you’re a pediatrician, although you might be looking at the same record as a surgeon or somebody else, that general pediatrician wants to see the growth chart. Well, that’s just not true if you’re a general internist, so you design different ways of looking at the chart depending upon the person and their needs, and it seems to me that the patient’s view of their record is exactly the same, it’s the same record but with alternate ways of organizing, presenting, using graphics differently and the like, and this gets into cognitive modeling and understanding background know-how and the like and it’s ripe for more research as well, but I would strongly argue against any notion that the record itself is different. But it’s not just terminology differences, it’s much more than just the right use of words and the words that might be more familiar to a patient then to a physician.
DR. WAGGEMAN: Peter Waggeman. I had promised myself not to speak up here and I’m breaking this promise as I listen to all of this. I think most of you know that I’m probably the one person who has been over the last five years, speaking at more consumer meetings to more individuals as consumers and patients, and is in touch, I get probably a month, I would say about 100 emails from people who are using personal health records.
Now just to put that in perspective, we had an estimated 13 million people are having a personal health record in 1999, I think we have now about five million, maybe four million. The numbers are coming down. In regard to what you have been talking about, the interesting example is when Wellmet offered to about 110,000 people that they could direct populate their personal health record out of (?) So what it really was that people could directly download into their personal health record from one of the systems, the providers, the data from the personal health record. Out of 110,000 people we offered that, was a free service, 612 took advantage of it. Why? Exactly what you are saying, part of it is that people really couldn’t understand it.
Wellmet has been working for two or three years on what they call a consumer friendly terminology so when you look for a broken leg in SNOMED it goes to fractured and so on and so on. Now Wellmet since last month, not anymore, it’s part of WebMD, I’m not sure how many people will be staying in this project or within the company, and it’s just a sign how the personal health record in general, has been declining rather than inclining as I thought a couple of years ago.
Now why is that? And this is where I differ with Ed and I didn’t want to say anything about it, when you talk to the people what do they want in a personal health record. For one they want a summary of their health care process. At some point you might hear me talking about the continuity of care record being developed right now, which really is a summary for the professional and for the patient of what is out there. But that’s not it.
Patients and consumers are saying we want two more elements in there and I haven’t heard anyone here talking about it. One is people are saying I want to know what is happening in the field of alternative medicine. If I go to a chiropractor, I want in my personal health record some information in there and to link from one to another. Patients are saying when I go to my doctor he or she is not interested in what vitamin therapy I’m doing right now, but it might effect the process. And if they are not interested at least I, as a patient, would like to provide this through my personal health record. So that’s the second part we haven’t been talking about.
And the third part is the most important part, that when you talk to many of the patients and individuals what they say is I want a personal health record for minor issues. Two years ago I had a rash, I bought over the counter some cream, it went away, now I have it again, what did I do? I want a personal health record, women are saying, I want to have information on menstruation data, I don’t know to share it with my doctor or maybe my spouse, but I want a record of what is going on. People say I want a record on sexual information, personal information, just for my own good so a year later or two years later or five years later, I know what happened in my health history.
So what I urge you here as we are talking about a structure and the data elements to include those two additional parts. Coming back to the first part, kind of a summary of what are the important parts, consortium of ASTM, of HIMSS, and the Massachusetts Medical Society had just a meeting on Tuesday, with over 100 people there where we are creating the continuity of care record which can be used every time a patient goes from one provider to another, maybe from a hospital to a specialist, from a primary care professional to a specialist, hospital, nursing home, office, we hope to have that standard ready by next year so this will be from my point of view the main summary for a patient. Thank you.
DR. DEERING: Actually that was a good segue because one of the things that I wanted to get back to was David’s initial presentation, which he had shared with us before, the survey that you had done about what consumers and patients want and Peter you certainly strengthened that message. And it does seem as though this is one of those areas where you can almost not overstate the importance of consumer research, what do they want and where do they want it to go and why do they want it. And to the extent that professionals sit around, whether they be providers or technical people or government folks or not in trying to decide what consumers want and what they should have in their health record I think we are doing to create something that may not be as well used as we would like. Now having said that and I think that again one or two years more investment in really in depth research in what people want would not be a wasted investment. On the other hand there is a need among health care providers it does seem for some movement to go on in terms of what providers needs are, and let’s be blunt about it. What do providers need to do for their consumers and patients? And they do have needs and those are legitimate, and some of those may be met by some of the steps that are being made to just build into the EHR system those functionalities, etc., that will indeed support a lot of this, as long as we don’t kid ourselves that we are in fact in going the latter route that we are actually serving the needs of the consumer, I think they’re both equally important but we should bear in mind that they may be different and they’re both equally important.
DR. HAMMOND: I have two points that I want to make, the first may be a counter of the second point. But I think one of the things that is very interesting is to watch the advertisements on television from some of the drug companies, because they use both the medical term and then use a more common term and they’re educating the people. Go look at the magazines and the newspaper articles that talk about disease and disease problems and again, typically they’re beginning to use some of those words. So I do think we’re having an increasingly educated population.
But the point that I want to make is I’ve heard nothing that disagrees with what I was trying to say, I said a few things wrong, but back in the days when we first started HL-7 we had major pressure always to create a message within HL-7 that named every lab test and if we didn’t do that we didn’t have the ability to carry that. And so the point that I’m really trying to make here, when I talk about this from it’s the same and a generic issue, is that essentially the underlying application program itself that’s used in one setting can be used in the other setting, not only do consumers need different views but even physicians at different times need different views depending on what they’re trying to do. So these are all functionalities and are very, very, very general.
I think it’s extremely important for us to understand when things had to be customized at a level of different application because the vendors tell us that the customization that currently exists adds major dollars to the market price of systems that they design and worse then that you’re in the making this process itself, cost a great deal more money. So I think it’s important to be very, very careful at what are real honest customizations, besides simply the difference in terms of the terminology that is used across the board. And when you put a single record together from multiple medical specialties you have a common terminology that has terms in it that will be used exclusively by one group in terms by the other group but there is cross understanding. We’ve done some studies on this long ago in the ‘70’s and find out that a common terminology that’s rich enough is adequate to do some of this. So when I’m saying they’re the same, I’m saying they’re the same at some level and then a variable on that that I think is the specialty of a terminology table, for the customization, or the functionality of multiple presentations.
DR. MCDONALD: Just to follow-up, over the history of the standardization what you would hear is every separate niche would say we want to standardize but our standard should be different, which is sort of defeating the whole purpose. And the niches got down to like hematology versus chemistry and labs, because they thought of their records as being database records with the names of the tests as the field definitions instead of a different way that most systems are built, which lets you tailor them to the particular thing.
But back to the consumer record, let me say some skeptical things with just a little tongue in cheek, because I’m certainly, all the things we heard today are good. Well, I mean we hear that when you’ve got 110,000 people 600 took the bait, no cost, and there’s a similar effect, Dan Macy(?) study in USCD, they had a hell of a time finding 115 people, 115 honest men or women to put data in. And there is this phenomenon, we hear it in physicians, too, I did this and I did this and the computer should know that. There was this idea of magic that I think is widely prevalent and the computers will just know it somehow. They want that record as long as they don’t have to put it in. The physician wants it but they don’t want to do any work. And I think the patients when they come up against having to spend time every night typing things in I think there’s a different view of it and that’s the reason why we got to get it all connected because if they got a lot of it from someplace and just had to edit it and add the special things they wanted then I think it will work a lot better for them. But people, even educated long trained people get this idea, somehow the computer should know that and they shouldn’t have to put it in when it came out of their head.
MR. HUNGATE: I agree with all of that and would add the comment that one of the reasons that people might not be willing to put data in is they’re not sure they’re ever going to look at it again and they’re not sure whether anybody else is ever going to look at. So when I was just in the hospital I had to answer four different times what my drug interaction situation was. I could have put that in at home and they could have all looked at it and they could have just told by my bracelet that it was my information. So it seems to me that there’s a functionality in the patient record that has to serve the professional record. It has to be used --
DR. OVERHAGE: This is Marc, one of the things though that I think you run into quickly with that, and this is true in professional communication as well as the consumer professional is this issue of trust. We train our clinicians not to believe anything that they don’t directly acquire from the source themselves, and then I think it’s going to require that kind of transformation in order to really address that issue of trusting that information comes from the personal health record for care.
MR. HUNGATE: Trust is a critical parameter and I think in the same way that the language that is available to the consumer will have to have a button that says it’s professional language or its consumer language, because my professional isn’t necessarily going to use the same consumer language that’s in there and if I want to understand it it behooves me to be able to see it both ways, then I can make the translation. So I think the professional language is just going to be like Spanish on the Hertz terminal.
DR. LUMPKIN: I think that we need to as we’re starting to focus in on what we do let’s think about this in a little bit different fashion then dealing with consumers and list what we’ve been doing with electronic health records. And the difference is is that in much of health and health care we spend an awful lot of time training people in the use of vocabulary, that’s really what medical school is all about, and we think, when you think about the average clinician, I once timed, I think I tried to estimate but I think it’s about 20,000 hours of training that goes in from the time we enter medical school until the time you graduate from a residency, give or take 5,000 or 10,000 hours depending upon what specialty you’re going in. We’re obviously not going to do that for consumers. We have to recognize that people, everyone is going to come to a clinical encounter based upon a whole host of factors, factors related to socioeconomic status, to race and ethnicity, related to where they grew up, whether they grew up, we think about ethnicity in relationship to country of origin, but there is certainly a difference and there was in my clinical practice working in the emergency department at the University of Chicago of an African American who was second generation Chicagoan versus an African American who migrated from Mississippi in how you have to communicate.
And so when you start putting all these variables together on how you communicate to somebody the different potentials of how they match up become quite large, but they’re not infinite. So if we’re going to deal with this number of alternatives that are large but not infinite we use computers to do that. And so it seems to me that we have to be careful that we understand that a single term can be defined very precisely but then it has to be communicated with meaning and that the way that we get that meaning conveyed from location to another is to get a precise term, whether that be a SNOMED term. And then we move that SNOMED term from one place to another, which may be to the patient desktop or to their computer. And then how that person understands that terminology can be learned by that personal computer so it can be customized to be able to communicate. There are a whole host of ways that we can then take those terms and when the patient doesn’t understand to translate them, hypertext is a perfect example, put your little pin on a term you don’t understand and there’s another, Windows does it to me all the time in the health function.
But our challenge is is this an issue of technology, in other words do we need new technology, or do we need new applications. And so as a Workgroup as we look at our agenda of meeting this concept of a personal health dimension for it, where is it that we can make a contribution. If there are already folks who are looking at some of the data standards related to personal health record or beginning to look at models, then our role as a Committee would be to bring them here, and to an extent that we believe that those models or standards are applicable and universal then to recommend their adoption. If we believe that there are areas where research needs to be done then we ought to suggest a research agenda to the Department. And in many ways try to think about what it is that we as a Committee and a Workgroup of that Committee can add to the process to encourage it to go along rather than being the organization that’s going to put all the pieces together.
DR. COHN: I think you started out your comment by asking what is it we ought to be doing in all of this and I think I was kind of taking it a little bit on Mary Jo’s comment about well geez, we maybe need to do, there’s a need for sort of more research. Now let me make a comment. A year ago we had hearings, and we had hearings on personal health records, and we got vendors who came in to tell us what they were doing with their personal health records. Now I think we maybe conceptually advanced a little bit in the year in the sense that we’re sort of talking more right now about the personal health dimension and treatment, the health care industry and patients and all that have all advanced over the last year. Maybe we need to start by doing a little bit of information gathering to see sort of if we are talking about a personal health dimension that is somehow connected with providers, which is connected with patients, that it looks like that, and maybe we should begin to sort of look out there and sort of see what the industry is doing in this area, and I can think of for example of a number of different providers as well as software developers that are developing things that are sort of doing that, and it might make sense to sort of find out a, what they’re doing, what sort of functionality they’re perceiving is a value that sort of spans this, what sort of standards or issues that hare having the standards. And once again I think maybe the point here is to I guess I’m suggesting in the first step hear some information gathering sort of about what exists at this point as well as the learnings out there. I don’t think that we’re going to start funding two years worth of HHS research in this area, or if we do we certainly want to know what sort of research has already been done in the community that’s caused them to make the decisions that they’ve made so far. So anyway that was my thought.
DR. STEINDEL: A couple of comments and some of this echoes what Simon just said. In terms of what the Workgroup could be doing, I mean we heard a very clear comment from Mary Jo this morning about consumer research and I think we’ve also heard some statements that exploring the consumer research side, what is needed from the consumer point of view to get the personal health dimension moving is important. I think it’s very telling that Peter told the story of only 612 people signed up to use this. Why didn’t they sign up to use it? We need, there’s something wrong with that, there was a disconnect between the system they were offering and what the consumers wanted. And so we need to find out more what the consumer wants so I think consumer research is an important area.
Another area that Marc mentioned in passing as just a side comment was something that was very telling in the hearings that we had in the winter on the personal health dimension and that was the area of trust. I was very disturbed by the comments that we heard about people won’t, clinicians won’t accept electronically transmitted health information from other clinicians when they’ll accept it by paper, and we’ve also heard the statement that they won’t accept the personal health dimension stuff as well. I think we need to explore this area of electronic information and trust in electronic information. This is an area that has not been very well explored. Some of it may have to do with privacy concerns, we don’t know, but I think we need to explore this area better. Until we can establish a feeling of trust that this information could be exchanged reliably the dimension is not going to move forward and a lot of what we’re talking about in the NHII may not move forward either. But I think we also heard the statement that we’re not dealing that much with a technology problem, the technology is there and we need to explore what exists today, which is kind of what you were just saying, Simon, and enumerate the pluses and what’s good in this area so people are aware of them and can emulate them.
MR. BLAIR: Can I comment on that?
DR. LUMPKIN: Sure, that’s Jeff I assume. Go for it.
MR. BLAIR: I’d like to echo the theme that Simon and Steve and you have begun to point out, that we really need to understand the consumer interests much better, and one of the things that I think we need to make sure that we do when we examine consumer needs is that when we construct that information gathering where we really make an effort to make sure it’s inclusive and diverse because I’m very concerned that we look at consumer interests and we wind up compromising the information gathering by only considering those that answer the question, which might be the people that are information technology literate, computer literate, and if we do that we will get a segment of the population that would have an interest in this and leave out the folks that are not computer literate, that may not even be able to speak English in some ways, that are poor, that are disadvantaged in some ways, and they are very important portions of our health care delivery system that really need care and I would just hate to see us craft an information infrastructure that is blind to those non-computer literate portions of our population.
DR. HAMMOND: Who here has a personal health record? Two people, and the question I want to ask but I don’t care whether you answer it right now, but why not? I have a personal health record and there was one reason that motivated and two that keep me doing it. The first thing is my blood pressure started increasing, so I started recording my blood pressure so I could find out and track where I am. And my glucose started increasing and I started putting that in. And then I started worrying about weight and when I could keep my weight down I didn’t have to worry about my blood pressure and my glucose, so there were three numbers that I really wanted to manage, and I started a health record in ’87, I’ve kept track of my exercise activity and all those sorts of things. That’s my motivation. I have a friend who’s diabetic, who probably has the best diabetic personal record that exists, she firmly believes that she knows more about herself and her diabetes than any physician that takes care of her, and she’s absolutely totally true to that. So I think part of what we have to do is to understand the motivations for doing this, and I’m not talking about ROI or anything else, I’m talking about a particular reason and most of the people that I know that do this do it for a particular reason.
And then the other part of that is I think we really don’t understand quite the what and the how that we’re talking about disseminating this, are we talking about putting a personal health record piece of software in a box, selling it at Wal-Mart and Sams and the drug store, are we talking about a big vendor selling this, are we talking about drug companies selling this, are we talking how the -- that goes, so I think we really need to have some sort of model as to how we are going to get this thing in the hands of the people that were taught to do it and how to promote it, how will it hook up and things of that nature. Because you can get one of these by itself, unless you’ve got some way of having other systems talk to it, if my personal physician will not send me data for my personal health record then my next step is obviously getting that physician to give it to me on a piece of paper, if I pay to a dollar and twenty five cents to get it or more than that I may be really concerned. There are a lot of things of this nature that are very, very simple I think that are extremely important and we need to deal with if nothing else for the definition of what it is that we’re trying to do.
DR. DEERING: First a follow-up and this is the Jo and then the Mary will come second. The Jo, which is a follow-up to Jeff’s comment about research, there is in fact an emerging body of research about the use of technology by the technologically non-adept, at least those who are presumed to be technologically non-adept. And in fact it would be fairly easy to put together a panel for the Workgroup about work that’s being done in that area and in fact as an aside as Cynthia Bower my staff member will attest, there’s one program Chess(?) by Dave Gustafson out in Wisconsin that has been tested out the gazoo and in fact ODPHP is going to look into it, why do you need to keep this testing this stuff, and the findings are that in fact the greatest beneficiaries are those who are low literate, ethnic, and your non-early adapters, so I think if the Committee wanted to look into that it would be a very interesting panel for you.
And then the other area that I wanted to raise that came out this morning was the whole area of legal barriers, what are real and what are perceived. I think we’ve heard today that there are some very real legal barriers, and then there are legal barriers who may just be the perception of the lawyers, and that I was very pleased to know that Bill said that you’re looking at some of that stuff, so it could well be that that’s some low hanging fruit that’s right out there and you just encourage more resources be put into that and a receptivity toward those kinds of findings, that that would be very helpful.
And I do recall also back in our talk in Atlanta around public health, one of your little notes to me as an action step was the issue about in the privacy area, that there’s really quite a lot allowed by HIPAA but that it isn’t perceived to be allowed. So again perhaps a clarification of what is allowed and some definitive statements about that would be very helpful to work toward.
DR. LANSKY: Just two things quickly. One is to Simon’s point, the final version of the Markle report does a landscape scan of what’s the state of the art in the vendor community and in the consumer research world, so it is a starting point for where are we today, I think some of those questions will be here. In terms of Jeff’s point, I think it was a strategic question for this Committee to think about, which is whether, and it’s not either/or, you may wish both to say what population of people are the early adopters who can be reached out to and served with some of these benefits, and where an LHII or another initiative can come into play which will push this component, the personal health dimension more aggressively and maybe people with diabetes, or people in a particular part of the country. And so rather than saying we need to understand the complete spectrum of health literacy, of broader technology literacy, we may simply serve a particular population which is an early adopter population. But then I think in parallel one wants to understand the national audience and use community, so they’re not, I don’t think they should be seen as either/or, I would just say parenthetically when we did this online survey we actually had a higher percentage of low income people then is true in the general population responding, so I think some of the surface assumptions about the distribution of access to computers and email and technology, we should test all those empirically before we assume them.
DR. STEINDEL: Ed, I thank you for mentioning your personal health record because if you hadn’t I was going to in another sense, because obviously you have mentioned it many times in meetings in the past. And when you asked the question who has a personal health record, I didn’t respond, but then I thought about your answer and in relation to what I was going to say and in a sense I do have a personal health record, I have a file folder that I’ve kept of my information from who knows when of my various lab results and everything. And from a personal health record point of view it’s probably as useful as yours because it’s non-interchangeable, and I think this is the important point of people who are keeping personal health records, is that they haven’t gotten to the stage of realizing the need that that information should be, we should be able to exchange that information with other people, and I’m sure the colleague that you mentioned, the diabetic, is probably in the same situation, may have a spreadsheet with her whatever. But that’s something that we need to explore from the consumer research point of view, who are the types of people who have this stuff in their shoeboxes and their file cabinets, and why wouldn’t they keep it electronically, or why didn’t they join the Wellmed movement so it could be exchanged. I think those are the issues that we need to explore.
DR. LUMPKIN: John.
MR. HOUSTON: Just a couple points. I think what we’re really talking about obviously is engaging patients through technology and I think part of that is also engaging patients through email, and I guess anecdotally some of the things that I think are problematic also not just looking at the patient community and deciding whether they’re going to be receptive, but I think on the other side is also the physician community, which maybe I don’t know, I hear a lot of push back from physicians who don’t necessarily want to, or don’t believe that they have the time to have a quality interaction via email. Or they’re concerned if the patient is maintaining his own health record whether there’s some obligation then for that physician to be actively looking at information within that record, are they liable if the patient were to make notations in the record, something meaningful, that the physician didn’t see and/or wasn’t looking actively at the record and it turned out to be something that led to some type of adverse outcome or some other issue. I mean I’m just hearing these types of issues and I know they’re more anecdotal but I think they’re things that need to be taken into consideration to make sure that there’s an efficient way to engage the physicians and a way to allow the physicians to decide whether the quality of communication that he or she is having with the patient is such that it makes sense to continue on with that type of dialogue or interaction.
MR. HUNGATE: If you want to go surfing you look for a place with big waves, and it strikes me that there’s a lot of research taking place out in the field and Simon’s suggestion at the hearing seems to me like the right approach, but I would like to narrow it a little bit in one way and broaden it in another way. I’d like to narrow it to a field like diabetes, where there is a lot of attention, there are a lot of waves, and I’d like to broaden it in the sense of picking up disease management companies that are now selling products to employers to manage that disease, and find out are they using records with the individual taking, how are they going about that.
The other piece of that that I would like to explore in the same time as I remember talking to one diabetic who was trained more as an engineer and had begun to take all this data, took it to their rheumatologist who said I don’t need that, I’ll do my stuff and you just keep that. And so there’s a barrier there from the professional side, this trust business, it’s not my stuff, I don’t do it, that I think has to get talked about in the specific context of an example. And I just, I work better from the particular to the general then from the general to the particular so I would make the plea for picking a place, maybe diabetes is not the best place, but it’s a pretty current one for the hearing approach.
DR. LUMPKIN: Let me jump in here and then I’ll get to John. First, I think this issue of trust is something that we need to explore. I can think of a number of times when I’ve seen patients who come in from the emergency department and the triage note would say no allergies, the nurses note would say no allergies, and then when I asked them again they’ll say you know now that I’ve been thinking about it there was this time, so that there is some validity to redundancy in the system and in questioning, and that’s something that really is a patient education piece. But on the other hand why should the patient have to remember that they had a reaction when that ought to be part of their longitudinal health record that travels with them. But be that as it may I think that there’s more to the trust issue that could use some exploration.
The issue of data entry by consumers is also another one that I think is probably worth exploring, particularly as we’re now moving toward an area and the question is is whether or not the move to barcoding is robust enough. In other words can you when you’re a patient get your prescription bottle with a barcode and then every time you take a pill you just scan it rather than having to enter into your record that you took your medication. I mean particularly think about patients who have those pill containers that are seven by ten, seven days of the week and ten pills that they’re taking, the thought of scanning those babies is a little bit complex and there are many diseases, both in the elderly who this would be particularly challenging where barcoding or some other similar technology would be very useful. And if we don’t think about it now we may not be able to put placeholders into what’s being developed, and that I think there’s some benefits to doing that.
I think that the point about developing models for getting this thing into the hands of consumers is one that we really probably ought to pay some attention to. In one sense I think the marketplace will help determine that. In the other sense, it’s comparing, this quote has been bugging me for about the last week and I haven’t had a chance to research it, but it is Arthur Clark or someone like that who said that any sufficiently developed technology will appear to be magic. It was Clark, and our point is until we get to the magic part we’re only going to see 600 people adopt it. But that doesn’t mean that 600 people adopting something isn’t a very important step in trying to get to the point where we can actually make it into magic.
DR. YASNOFF: I wanted to support Simon’s idea of having some hearings and looking at the state of this area, but also suggest an expansion of that in that I think not only does the Committee need to look at that one time, but I think there’s a need to monitor its development, and even more importantly to facilitate the availability of the information about the development of the personal health record to those people who may be interested in it or working on it. I am not aware of a resource where, and maybe there is one that I’m not aware of, but I’m not aware of a resource that you can go to that says here are all the different projects that are going on in the personal health dimension. And so you have the same, a similar issue to what you have in the development of local health information infrastructures, that when someone in some community wakes up one day and says gee, this is a good idea, they don’t have, at least in the past they haven’t had anywhere to go to find like minded people in other communities who may be ahead of them that they can learn from, or in the case of the personal health record they may be able to find someone who’s already developed a system that meets their needs. And so perhaps it’s time to create and maintain an ongoing catalogue of these activities, not only for the benefit of the Committee but for the benefit of those people in the field.
DR. LUMPKIN: Let me just push back a little bit on that because I think I heard David say that as part of the project that he did with Markle that they did in fact do an inventory. Is that correct?
DR. LANSKY: I would say we did a snapshot and it’s now six months ago, I think Bill’s point is well taken and it fits into your measurement challenge that you talked about this morning as well.
DR. LUMPKIN: And the question is is whether or not that really would, given that there was a snapshot and that there’s need for ongoing monitoring, is that something that would lend itself to doing in a hearing format as opposed to some other methodology?
DR. YASNOFF: Well, I think there needs, as I said, I was supporting Simon’s point that there needs to be a hearing so that the Committee understands this, but I think that the, I’m not suggesting that there be ongoing hearings as a way of maintaining this communication, I’m thinking more of a web-based inventory that’s constantly maintained. Mary Jo is shaking her head and probably wants to volunteer to do this --
DR. DEERING: No, we gave the website to you.
DR. LUMPKIN: Well, you know, I was just thinking if there was like an entity within the federal government, let’s just throw out and let’s say that the Office of Assistant Secretary for Planning and Evaluation who had responsibility for this kind of stuff and maybe they might be able to maintain that inventory. I don’t know if we know if there might be some entity that we could think of that would be likewise suggested --
DR. ZUBELDIA: John, there’s a group of medical specialty societies that have put together something like this on the administrative side of HIPAA, and it’s a directory of practice management systems that the vendors themselves maintain, and it’s the one place where they’re all listed and it’s a great resource for physicians that are looking at whether their practice management system is going to have the HIPAA transactions or not. But this could be a self maintained directory where the vendors would list their wares and say this is what I can do.
DR. STEINDEL: John, I would like to fully support this idea as someone who has just very recently researched the topic of what is out there in terms of LHII like systems and also what is available in terms of personal health records or personal health record systems, and find that it is not coordinated in one place. I fully encourage ASPE to set up such a website.
DR. YASNOFF: I wasn’t meaning to volunteer, and I’m waiting to hear what Mary Jo has to say about it.
DR. DEERING: -- was volunteering you because we gave you the website back. But I was actually, was I up next? I was actually again, so this will be Jo first, or Mary, I was actually going to make the point that Kepa did is that although this is something that the federal government can’t do, but to have a website that is self populated, self reported, self filled in, I think would be an easy and interesting way to do it but the federal government can’t do that, so if there’s any way that we can think of anyone who would like to just host that and help build it then I think that that would be very useful --
DR. ZUBELDIA: Mary Jo let me volunteer David Kibbe(?) to do that, because he’s the one that initiated the HIPAA records management directory and he’s after this other project of open EHR, so I think he’s positioned right in the right place to do that.
DR. LUMPKIN: Just so we don’t leave that point because I think this may be something that we can talk about kind of quickly, either the federal government or other entities who have funds that are given away for good reasons could fund such an entity to start up, and then it would be self-maintained, I think if we as a Workgroup think that that’s something of value we can make it as a recommendation as something that needs to be done, and then leave it to others of whether the federal government or private sector entities that jump into the void.
Now Mary has made her comment, how about Jo?
DR. DEERING: I wanted to actually hark back to our morning discussion and the NII and say that if we wanted to just have some fun today I think something that we should do and could do is also look at emerging technologies that would play into this. You talk about scanning the pill, you’re going to be able to scan the pill bottle, you will be able in the future to scan the pill, I mean the pill inside you, it will beep when it goes down, right? I mean seriously, as I say this would be both fun and important and I think it’s important because it means that, in fact one of the things I wanted to add to the NII letter is that I think it is still too provider oriented and I think a lot of this high end technology has applications for the individual and could, again it may be ten, 15, 20 years out, but that’s why I suggested it as something fun but useful to maintain on the horizon as to what might be.
DR. SHORTLIFFE: This is a related comment but it’s really not right on this same point. As I listen to this we’re talking an awful lot about existing technology, asking people what they want, trying to understand their needs, etc. There’s a whole set of research issues that I don’t think have really been explored very much or if they have that might be a suitable topic for hearings. And let me give you two analogies to what I think is sort of missing here. One is the phenomenon of the physicians roles in needs assessment, so when you’re doing a hospital system selection and you ask physicians what they need, what they want, and the fact is at least when that whole process was getting started they didn’t know because the field hadn’t evolved enough, they hadn’t really thought about it enough, and they didn’t have the experience to actually be able to answer the question. And so I have concerns about what we really know about what patients wants, could use, or would be most useful going forward because asking them isn’t necessarily the right way to find that out.
I’m reminded of a talk that a computer science luminary gave in 1978 and he gave a presentation about how he believed that within a few years people would actually have computers in their homes, because that was still timesharing, big machines in rooms. And the reaction of everyone as they came out of that talk, I’ll never forget it, they were all sort of shaking their heads and saying what would you do with a computer at home? Keep your recipes or balance your checkbook? I mean they couldn’t imagine why you would ever want one and why individual computing would be an issue. So it’s just an example thinking back about how hard it is for patients who never really had computer based personal health records that could talk to their doctors office and they could integrate with other information resources to really answer these questions as effectively as we might like them to, they don’t know I believe. And there are therefore a whole set of observational and cognitive studies that have to be done to really try to understand what are the challenges that people face in their homes, in the physician office setting, what are they stumbling against, how might technologies of one sort or another meet those needs so we’re a little less of the technology hammer looking for nails and instead really trying to understand what the nails are and then matching the technology to that.
And there’s some work like that that’s been done but I don’t think it guides us enough and I don’t think we do enough of it and if we wanted to talk about a research agenda this is an area in the area of personal health where I think there’s tremendous opportunities for us to better understand just what the needs really are.
DR. HUFF: I was struck by the comment about CT scanners and adoption of that technology and pondering more about the political cultural business financial barriers to this. And without saying, I really thought about our own experience. I mean Intermountain Health Care has spent a lot of time creating, time and money creating an electronic medical record and in thinking about that then we’ve had a great interest in what we’ve called a personal health console and making that data available to patients. In the context of this discussion some of the issues that have come up and that I would like to find out others’ experience and understand whether these are unique to our situation or others, but I mean we had, we actually wanted to share the information but you come to the situation, for instance if you assume that somebody had a personal record at home, how do we, in an ideal situation any of your blood glucose’s or any of that stuff, they’re done in a lab, technically we could send it there, but who’s going to pay for that? I mean it costs money for IHC to send data to somebody’s personal record. You have to develop a program that’s going to dial them up or however you’re going to do it, and so what’s the financial incentive to do that.
The second thing that was interesting is that we had physicians who were tightly aligned with IHC and they were putting information into the record and we said well, we’d like to make this record available, we have the technology to make it available to anybody who has internet that we can securely identify, and the physician said no, we don’t want to share with people who aren’t willing to contribute to their record. I mean it’s sort of the theory that I would like to have, the ideal situation is to have everybody in the community immunized but me so that I get all the benefit and none of the risk. And that was sort of the philosophy of people as to say look we’re investing a lot of money and the physicians themselves said we invest money in entering the data to make this record, and now somebody else who wants to keep a private record can see all of our record and they never contribute anything back to that record, why should we let those people see the record, why don’t we want to share with them if they’re not willing to pay their part and bear the burden of sharing in that environment.
Another thing that came up is, that was mentioned earlier, is that in our environment it becomes institution, so if you assume you have this record, and IHC is contributing information to it and they go up to the University of Utah and they contribute information to that, in a sense you’re aiding and abetting your marketplace competitor in sharing this information about the patient and it’s obvious that it’s to the advantage, it’s to the advantage of the patient to have that information shared, it’s not clear that there’s a business advantage as to the business to share that information, and what could we do to overcome that barrier.
Finally, as we made it part of our health care console was in fact that the patients, if they were looking at the data that we were sharing with them and they wanted to ask a question they could send secure email to the physicians, and then immediately the question was can I get reimbursed for my time in answering emails, what are the policies and procedures and legal capabilities that would allow me as we get into that electronic venue to be reimbursed for my professional services in that thing. So those are some of the issues that we’ve come up against and it seems to me that we could hold some hearings and ask those questions, what are the business, cultural, financial barriers to this and how could we answer some of the questions about how data sharing happens and if there are costs involved, how could those be legitimately reimbursed and all of that sort of thing.
DR. LUMPKIN: I have Simon.
DR. COHN: Well you know Stan I’m actually glad that you are before me because you saved me about five minutes worth of conversation. Actually to me there’s a couple of things, I mean one is is that we talked about electronic personal health records, and I’m reminded that there’s a whole range of functionality that is either in or not in and there’s like a real grayness and indeed the IOM report lists out a lot of different functional pieces, and obviously we’d find in any place that there are some things where things exist and some things where they don’t, what is it that we’re really talking about. But certainly a piece that we’re talking about includes things like email interactions with providers, which I think is a piece of this. I’ve certainly been involved in a number of conversations as well as one day meetings on this whole issue of, and they were called eConsults but they’re really eEncounters, and certainly there are, I mean I obviously come from an integrated health care entity and we’re primarily capitated, the incentives are the right place for a lot of these things to happen. But if you’re out in the non-integrated environment, non-integrated world, I would actually at least probably ask for flat incentives on this one as opposed to disincentives because clearly, and I think part of what John Paul was talking about this one, the issue is if you are in fee for service and you are dealing with a patient electronically and you do a really good job with them and you see them less as a result, it obviously benefits the patient but it has negative economic consequences on you as a provider. So this is clearly an issue that I think we probably should at least at some point talk about or look at how all this plays out. It’s not just personal health record, it’s probably Bill Yasnoff’s earlier conversation around financial incentives. Anyway, just a thought.
DR. ORTIZ: Can we talk about things that aren’t directly related to personal health record at this point or not yet? There’s a relationship but it’s not exactly personal health record.
DR. LUMPKIN: Well, we talked a lot about trust and I’m going to trust you to --
DR. ORTIZ: The one thing that I wanted to bring up, Michelle and I were talking about this and it’s of great interest to us at the agency, and I know it’s something that’s been talked about before but it’s kind of revisiting this issue of the minimal data set, which does play into the personal health record to a certain extent. And I think this would be something that would lend itself really well to hearings and one, we know first of all that there’s a lot of interest in this kind of minimal data set from a kind of patient safety perspective and quality of care, that some kind of a small discreet set of data that patients carry around that would become kind of ubiquitous. Now one of the concerns though is there’s a lot of talk about this minimal data set but not a lot really happening, and the stuff that is happening is happening kind of disparately, so for example, Peter as you know is doing a CCR effort, which is kind of along the minimal data set but not exactly what we envision the minimal data set. HL-7 is working on stuff with CDA and some of this other stuff that might play into this, so there’s a lot of different groups kind of doing different things but nobody’s kind of bringing it together so it seems like this would be something that would be very important that maybe NCVHS could take a lead role in. I think it would be a big deal in terms of the NHII and kind of getting in some of the little basic infrastructure and in terms of patient safety, and there’s a lot of issues. First of all, should this be something that we expend efforts on? If so, what should this minimal data set look like or whatever you want to call it? What should it be populated with? I mean what we thought should be the minimal data set is very different then what the CCR is kind of heading in that direction. Is that the right way to go or this the right way to go? I think NCVHS could probably help out a lot in that category. Should there be a standard kind of minimal data set or should we have different version, should there be like a provider version? Is there an adult version versus a pediatric version? Is there a patient version versus provider version? And there are a lot of questions like that that I think are interesting that we could really delve into. And also it would be nice in terms of I know we wouldn’t prescribe who takes the lead but I mean it would be nice to kind of get to a sense of first of all find out all the efforts that are going on out there and then finding out is there maybe a group or somebody that really should be taking the lead in this effort to kind of develop this type of data set. So I think that’s something that seems like it would lend itself really nice to a set of hearings and I’d be very interested in that. Is that close enough trust, or am I too far off for you?
DR. LUMPKIN: You’re definitely trustworthy.
DR. WAGGEMAN: I wish I could talk more about what the CCR is really but I just heard not the comment, who really are the users of a personal health record, and I think there’s an aspect which has been missing in this discussion. All surveys have shown that the lowest number of people who really have a personal health record are those who have some information for themselves, like I mentioned some have information, I’m not sure how far this goes besides blood pressure, if you have your immunization data and all of this -- but the majority of people who are interested in a personal health record are people who are authorized users of others, others being in most cases the next generation, parents, relatives who are in nursing homes, and for people who are computer literate and understand the health record, in some cases are trying to understand the personal health record, people who are in the prime of their life and have their parents sometimes or grandparents, other relatives, as authorized users, are trying to get that information and saying what is going on in that nursing home, what is going on in that hospice and so on. So we have to keep that in mind.
The second largest group is really parents, and we have to realize when we are talking about a personal health record that every parent in this country and in additional 87 countries on this planet are getting from the Department of Health a little booklet for health information. Now some countries have been talking about having this kind of booklet in the future on websites and saying this is for the beginning of a community health record, other than printing out booklets and handing it out to parents and they fill it out the first year, sometimes the second year and so on, but really have this electronically implemented. I have talked to some countries and that would cause minimum, if you’re really do this on a large basis and you compare what the costs were on printing booklets and sending them out and so on. But the key point I wanted to make here is that the majority of users at this point for personal health records are not using it for their own good, but for parents or for children.
DR. LUMPKIN: And I would just add to that that actually through funding for the Centers for Disease Control most states of the nation now have electronic immunization registries, but they’re not in the hands of the parents, they’re in the hands of the state or the doctor, frequently aren’t even allowed to be shared with the schools. Let me just sort of, before I get back to Bill, to push back an issue of the minimum data set. And the only reason why I’m asking about that because I think, my impression and I could be totally wrong because I’ve actually been wrong a few times in the past, more than I care to number but anyway, it seems to me that the time of minimum data sets has passed. I could see an optimal data set, because by and large we’re not talking about somebody filling out a document, which is really where minimum data sets came in, where the cost of data acquisition was extremely high. If we’re moving into an electronic process where data is entered once and then transferred the cost of filling out a record may be having to overcome obstacles, which are financial, cultural, and business obstacles, to share any data. But once you have access to an electronic health record the optimal data set for a personal health record becomes a matter of how you build the architecture of the system that we’ve had some discussion about, how do we describe it and who is the one who will build it. Is that, am I off base on this?
DR. STEINDEL: I don’t think you are John, because we did hold a hearing on one of the topics that we explored was the minimal data set for the personal health record, and David I believe you testified at that hearing, and we really didn’t, we heard first of all the one, the minimal data set for personal health record is not vastly different from the minimal data set for other health records. And number two, it varies depending on what the need is and there was a lot of different elements, which is kind of what you’re saying right now, so I kind of agree that I don’t know if it’s worth exploring that. And I have a middle name, too, like other people have mentioned, so I also wanted to make another comment --
DR. LUMPKIN: But you have to share your middle name.
DR. STEINDEL: It’s Jay. It actually is Jay, J A Y. And this is in comment to what Stan was making earlier about the cost of the sharing, and not just the fiscal costs but the legal costs and the business costs and the need, and I think the area, we have two sites that I think are good examples of where this is sort of happening and one is Santa Barbara and the other is Indianapolis, and we had Santa Barbara come and testify here and the way they put that together was a tremendous amount of time spent working out legal agreements and how this information can be shared, and from a fiscal point of view that was all funded from outside, they found sources of funding to pay for this because it was very expensive. And they’ve just recently published a report of the activities and I don’t know if it’s a model that can be reproduced very well.
The other is Indianapolis where they’ve used more of a competitive advantage to share data, to have access to it and things, and being able to tap into other information, and that seems to be somewhat successful in their environment. So we do have two different models of sharing that maybe we should look at more.
DR. HAMMOND: Again, I want to go back to the minimal data set idea, too. Connected for Health in its last month or so before it did the final report did address this issue a little bit and two things came out of that recommendation that’s consistent with what you’re talking about. In a sense there are business data sets between businesses, and maybe between, and maybe all the clinics associated with a hospital, it may be between two hospitals, etc. And so what we had proposed is that we needed a master data set that defined effectively any and all data elements that one might use and a particular business would derive whatever data it collected from that master set and even could electronically have available what it collects so that anybody doing business with it would know what it was being collected, and then if you needed other elements you would negotiate for collecting those elements. My experience is with minimal data sets is they’re the most dynamic thing I’ve ever seen because there continues to be reasons to adding something else to that. I think one of the problems is everybody who creates those creates it from scratch, there is no standard from which you draw, and those are the things that make this a much bigger issue then it is otherwise. So I totally support your position John.
DR. ORTIZ: I guess my response would be a couple of things, would be number one the reason this is coming up is because I’m seeing it come up on a national level with lots of researchers and clinicians. The David Bates’ of the world and these national, people who are leading patient safety things are saying that this is still a big issue. Number two, the issue ends up, we’re doing a lot of stuff with CMS and there’s some demonstration projects we’re working on, and the reality of it is yes, if you had a fully functional electronic health record system you could have this optimal data set but the reality of it is that’s not what’s happening, and in a lot of these situations what it looks like is we’re going to be doing these scaleable projects where they’re going to implement electronic prescribing or lab results and they’re going to put these things in pieces electronically and so the key is if you’re going to be doing these things kind of in piecemeal fashion, because that’s what they can afford and that’s what we can do, can we provide some guidance and some things to these organizations and places in terms of what can you do that’s low hanging fruit, that’s doable now, that can get you some significant gains in terms of patient safety and quality of care.
Well, right now data is just not shared and as a clinician you know that my gosh, if you could just get five data elements, if you could get the problem list, the medications, the allergies, recent labs and recent procedures/surgeries, whatever, that may not be the exact five, and yeah the problem is that’s why we need somebody to take a lead because people keep adding. You go to the CCR effort and they go yeah, but about how this, well what about insurance information, well what about DNR status, well should that really be part of it. I mean can you do four or five or three or seven things that you can kind of push on that yes, if every clinician or every patient could get access to this set electronically ideally, how far would that push things forward in terms of patient safety. It would make a huge difference in terms of redundant lab ordering, in terms of medication errors, in terms of drug interactions, in terms of allergies, so that’s kind of what we’re hearing on a national basis that maybe here people don’t think it’s still alive but on a national level it’s still alive and it’s still an issue, so that’s kind of why I’m pushing back because I think there’s still demand out there for that.
DR. LUMPKIN: Well, let me clarify, just ask a question of clarification because I hear you describing not a personal health record, but I’m going to call it an enhanced patient identifier. So in other words the card that you carry doesn’t just have your name and your address, but also would include these other items that we call as part of the minimum data set.
DR. ORTIZ: I don’t know what you call it but that’s in essence what we’re looking at, is a kind of a core set of information that’s really important in terms of being able to carry that from provider to provider to provider not just when you get referred but when you move, when you’re on vacation, when you’re traveling, when your insurance company switched plans, etc., etc., but just what is, could you do something like that and it could be on a smart card, it could be electronically, I don’t know how to do it or what the best way to do it, but that’s kind of why I wanted to see if this is something that we should address, if there’s a role for us in this area.
DR. WAGGEMAN: Because so many people have been mentioning the CCR I would like to take an opportunity to explain for a minute what this really is. The Continuity of Care Record is a data set, it’s a technology, new development where we are trying to create a consensus right now what the data elements are for a data set which has four parts. The first one is demographic information, including insurance information. The second part is the patient status, immunization, allergies, medications and so on and so on. The third part is by any provider the summary of care provided. And the fourth part is a recommended care plan. Now the ideal that is that this data set, and we are working on it, what is the minimum data set which is mandatory and which one is optional, that this data set is to be used every time a patient goes from one provider to another. The basis was the third data set which is mandated in the state of Massachusetts, when you go from one hospital to another for transfer and for discharge the hospital has to complete those data sets. So what we have done is expanded that and said that should apply to any type of situation where a patient goes from the primary care physician, to a specialist, to a hospital, to their physician from a nursing home, to hospice, whatever, it should apply to any domain of health care. So the main purpose of that is just to create a consensus to get this data set as a national standard by the end of the year. We are not looking at technology, some people at HL-7 felt this was competitive, we are working, we have talked with CDA folks, some people might print it out when a patient is being discharged, some people might send it as a secure message. We don’t care at this point how it’s being sent, our purpose at this point is just to create a consensus on this data set which can be used whenever a patient in this country goes from one provider to another one.
DR. BOWER: I wanted to agree in concept, oh, sorry, I’m Cynthia Bower from Disease Prevention Health Promotion, I work with Mary Jo. I wanted to agree in concept with Eduardo but for different reasons, and that the rationale in addition to some of the clinical explanations or reasons that have been given is there might be good reasons from a consumer acceptance and consumer confidence perspective. And this idea that there might be perhaps a third or even, maybe a half but probably a third of the items that were up there on Ed Hammond’s slides that people might really be interested in having for themselves this enhanced patient identifier idea that you just had, and that even going after the things that are mandatory or semi-mandatory, for example, like immunizations or communicable diseases, things that you don’t necessarily have to spend a lot of time on persuasion, because persuasion is very labor intensive shall we say, that this idea that you have to convince people to give certain things up, that there’s pieces of information that, for example, I can speak as a parent, like the immunization information, that you just have to deal with on a fairly routine basis and it’s hard for most people to think that that’s going to be somehow compromising in some way. That if you really focused on this very small number of things that that’s the way to engage perhaps people who might not even think about this if you’re talking about a much more all or nothing approach.
And the reason I say that is because one of the latest Pugh Internet in American Life Study projects or reports indicated that we need to think about people using the internet sort of as a continuum, that there are people who are connected, willing to stay to connected, they’re willing to upgrade, they’re willing to use all kinds of different services, and they’re just committed. Then there’s another group of people sort of in the middle who bounce off and on depending on their circumstances, their interests, their time, but there’s a variety of factors that drive why people might be willing to use the internet. And then there’s sort of this hard core, about 20 to 25 percent, who just say I have no interest in this, I just don’t get it, it’s not relevant for me, I don’t use it, I don’t want to know about it. And so the thing is is to the point that I guess Jeff or someone made earlier, if that’s true, if there’s sort of this hard core that really don’t think that this is relevant to their lives, you can spend a lot of time trying to figure that out or you can sort of focus on the minimum number of things that they have to do anyway and how electronic systems might help them anyway, even if they don’t want to be engaged at the level a lot of people would like them to be engaged at, that there could still be a lot of benefit that’s derived. If you start thinking about this as more of a continuum of the way people interact with technology and sort of building confidence over time, if you start with a very small number of things that people would have to do anyway.
DR. STEINDEL: Listening to Eduardo talk about the need for a minimum data set being expressed in the area of patient safety, and then Peter talking about the CCR as if we can use the words minimal data set for someone transferring between providers and what we were saying before about the minimal data set as a concept, and they’re all very consistent. People can and want to define a minimum data set for a business specific area. Patient safety is a business specific area, it may be a very broad business and may extend to everybody, but the problem comes about in establishing a minimum data set that applies to everything, and when you start looking at that it’s probably a very, very small subset that’s almost self evident. And then when you get beyond it you find this group wants to add this part, this group wants to add this part, and then you get beyond what I would consider to be a minimum data set, but a data set that’s expanding. And then when you focus it down though to a specific business need like patient safety then you can put it into a realistic realm. But what we heard was probably the patient safety people should define that minimum data set and if they want confirmation come to the NCVHS and we can hold hearings and say yes, that sounds good and it’s probably applicable to other areas as well. But for us to go out and develop a minimal data set, what we heard I thought was that it would be a multitude of groups saying add my piece, add my piece.
DR. LUMPKIN: Let me sort of jump in here because again, I remain equally as skeptical, and I do it for a number of reasons. One is that I think the days when this Committee was developing the data sets or standards is passed us, and that’s just because there are a whole host of organizations that do this for their reason of existing. And that I don’t remember how long it took the Committee to do the health minimum data set, but it took years, and my guess is by the time we were to complete that project what we would have completed would have been obsolete. Because since HIPAA our members have been a little bit busy, those of us on the Committee I think can appreciate that, that there’s a lot of work there, and work on development of standards is not one that I think that should be high on our priority.
But I’m going to also suggest that what I hear being described is a minimum set of information that should be moved, which should follow the patient around, and that ought to be something that the electronic health record does even if that’s the first iteration of electronic health record, it’s just doc, if you’re only going to fill out one thing in electronic form here it is, because this is what we believe has the highest potential for preventing a medical misadventure. And I think that that’s something that we as a Committee and one of our Subcommittees would be willing to look at and endorse.
The star I’d like to stake our efforts on is that the potential of driving forward the process of the National Health Information Infrastructure, the potential for moving forward the transformation of health care has a player who was at our table but who left, still intends not to be at the table, and that’s the patient. And that the promise of the electronic, the personal health dimension is to allow the patient to be an equal partner in health care encounters, and that has a tremendous power, it has a power for enhancing the quality of care, it has a power for reducing variation in health care, it has the power to connect to patients to the outcomes. Clearly models that demonstrate patient involvement in patient’s health care, the chronic disease model and other ones, indicate that you have much better outcomes if the patient is actively engaged in their care.
And we have spent a fair bit of time developing the framework of how that can be done, how the clinician can be assisted in providing care, and what I see as really being a promise of a personal health record is how we can assist the patient in being better involved in that care. And that means that we in many ways as we have done on this Committee where we’re less fettered by actually having to have actual standards come out is we can sort of maintain and work on our vision, and that vision can be used to give a direction to the industry. And the work on other committees, such as the Standards Subcommittee and Privacy, we let them focus on more of the details and that’s good because we overlap, but I would argue for us trying to take a much broader scope and higher road.
I had Ed.
DR. HAMMOND: Actually I’m going to switch my comments and respond related to your last piece of this. It got casually mentioned one time and never picked up but I think the concept of disease registries is a very important one and I think that’s a very important part of the personal health record. And I think this is the way that you get the individual involved, and this is the way you get increased compliance, and as we see the baby boomers, as we see the value of managing chronic disease, that I think is observable by the individual as well as by the health care system, is enough that this should be a strong focal point and I think this group should begin to look at making some of those registries, some standardization perhaps of those registries, some understanding of what we have and what we need, beginning to move those into the health care process. Because if you couple that with a quality index so that I myself know how I’m doing versus how I’m expected to do, I can change my behavior and see an impact of that. It also lets me have a much better understanding why I’m getting tested when, why I’m doing the medications I’m doing and what the outcome of that should be. So I would really like to push that as an item that you all look at.
DR. LUMPKIN: And I would just like to say for those of us who come from the public health spirit, the disease registries you use is different then the surveillance tool --
MR. HUNGATE: Add on comment to the same thing is that this is also I think the best place to catch functional status, which usually is not captured otherwise, and we’ve already burdened the professionals, and I think we need functional status in order to make these measurements work.
MR. WAGGEMAN: Let me explain why I, coming from a personal health record switched to the CCR. When I, and I have been speaking as you know to many, many groups and many hospitals, when I speak about a personal health record to prestigious institutions, I won’t mention names here, to East Coast or Midwest or otherwise, and I have 50 or 100 doctors in the room, the number one response I get, I wouldn’t trust if a patient took information and summarized it or whatever he did, massaged it, I wouldn’t trust the personal health record if it is being done. This is a major factor you cannot overlook. Because we’ve had the Continuity of Care Record, which is something provided by a care giver and signed by a care giver, and when the patient is transferred it goes automatically with that patient, if a patient is referred it goes automatically with a patient. If a patient is just discharged it’s being printed out and the patient, if he or she cares about it, can take it and bring it along. It’s much more effective than any other way of a personal health record.
DR. BOWER: I guess I didn’t intend my remarks to mean that the Committee would necessarily take a purely technical approach to this, but that since the Committee’s role is to provide advice to the Secretary and the Department, in addition to the patient safety and medical error priorities represented by AHRQ our office spends an awful lot of time on prevention, and this idea that there’s very little that we’ve talked about today that for example would have an impact on the problem of overweight and obesity in this country. So by the time somebody ends up in a clinicians office and is part of a clinical visit, there’s a lot that’s gone in that probably needed to, the individual and other parts of the system needed to pay attention to, and that the kind of clinical focus sort of doesn’t mesh as well from what I’ve heard about what some of the Department’s other priorities are. So to the extent that there needs to be sort of a prevention population health focus to thinking about the minimum data set or expanded patient ID or whatever this is, I was thinking of it sort of more conceptually rather than just in terms of the specific technical standards because there’s, there’s also data that shows that for example the reason people search the internet is to find very specific information, that we have not yet figured out a way to catch people’s attention about how to use electronic information sources for prevention. That’s a wide open area that we know very little about and that we don’t have a good handle on what would drive consumer behavior to use electronic resources for prevention rather than just for managing a specific disease or clinical episode.
DR. LUMPKIN: And that’s the $64 million dollar question nowadays, of how do you actually incorporate a prevention agenda, because the first step is is that the patient has to want to change. Well, Richie is not here so I can’t use my psychiatry joke about how many psychiatrists does it take to change a light bulb? Only one but the bulb really has to want to change. And it’s very important in trying to get health messages, that again, people look for information that they’re looking for and occasionally they’ll incidentally run into other information that’s helpful. Eduardo.
DR. ORTIZ: Back to the minimal data set, no I’m just teasing, I’m done with the minimal data set. The only thing I was going to add is since we were talking about the personal health record and I’m not sure how this would be done, but I think I want to just encourage us to also find ways to incorporate patient preferences within the personal health record. I mean it’s something that we talk about but we really haven’t found a very good way of doing that, so I would encourage us to explore opportunities to be able to incorporate that as well.
DR. LUMPKIN: I’m going to suggest since we are nearing our end, not real close but getting close enough, our conversation seems to be winding down and I’m going to try to refocus us on the task at hand. I have a list of a few things that I sort of listed as potential activities and I’d like to expand that list with input. One is the issue of the directory of, making a recommendation that a directory be kept of personal health record like projects, so that this is kept up on a regular basis. Two is that we conduct some hearings and we make recommendations on the research agenda relating to the personal health dimension. Three is that we conduct hearings and address the business, cultural, financial barriers to participation of providers in developing the personal health dimension, and then obviously to discuss ways to address those barriers. The fourth is to encourage, and again this is something that maybe a communication, Simon has stepped out for a few minutes, about a personal minimal health information document, e-document, which would be that piece that would be sent off, it may not necessarily be work for our Committee but it could be a recommendation that this could be an early deliverable in our interconnected system. Other suggestions for next ways that we as a Committee can address the issue?
DR. HAMMOND: You mentioned Brown, Mr. Brown, the one that did that, it seems to me that getting a few people like that and even maybe create a video or something out of that would be a major positive way of focusing attention on this. I think getting him and others like him to make a little video of that would be -- the one that testified, that did his own health record for Connecting for Health that you mentioned.
DR. LUMPKIN: I’m only putting on this face trying to address that because I don’t believe that that’s our mission as a Committee is to create the public climate where it’s adopted, although again, if we’re going to be looking at obstacles --
DR. HAMMOND: Addressing the need, I thought that was the thing that you would get out of it, is to seeing what people have perceived as the need for one of these, looking at people that are using one of these and saying why.
DR. LUMPKIN: I think we can add that to our research agenda and I’ll just say that there are other people like when I wear my other hat who look at the issue of trying to build up through the use of communication devices support for it that’s probably more appropriate rather than necessarily the Department. Although at some point when we have a better grasp of what it is it may be very important for the Department to actually motivate people to use it once it’s available. David?
DR. LANSKY: I think I agree with your summary of what we heard today. Two highlights for me. The strategy which is the, call it patient/consumer research strategy, particularly identifying segments within that and thinking about both the type of services they need, essentially a set of ven(?) diagrams that I think have been discussed several ways today would be a useful service. The analysis of business, cultural, and financial requirements and barriers and therefore requirements is very useful. Putting those two things together I think is important, that is what is essentially the market segmentation, which responds to or doesn’t respond to the existing business, financial, and cultural system, but having done those two things and melded them into a matrix I think telling HHS agencies and the Secretary what can you do about it through federal leadership, in order, for example the VA obviously has been a leader in both the EHR and beginning to do the patient gateway. But the VA has not done at all a good job of talking to veterans about their requirements in building that capability, they’re really, there’s just not a scale set or not an approach they’ve really used. So as the federal agencies could be the initiators and trend setters of how this could play out, if this group can describe an agenda essentially a set of stages or phases, and then encourage, or help think about where can the federal agencies actually model or either solve the individual problems or model the solutions, that would be very valuable.
I’m concerned that some of the barriers I think Stan talked about cannot be overcome through LHII, they cannot be overcome without changes, Bob and I were talking about DRG payments, whatever, that there are federal policy levers as John said earlier, which are instrumental to creating a climate for adoption. So that whole pathway I think has to be laid out for the PHR to ever accelerate.
DR. STEINDEL: Just one minor, or maybe won’t be viewed as a minor comment, and then a question. Can we add to the very first thing that instead of just the personal health record that it’s all NHII like activity, that a website be developed in this area?
DR. YASNOFF: That’s already being done. I mean you can recommend that if you want but that, outside of the personal health area that’s already being done.
DR. STEINDEL: That’s already being done.
DR. LUMPKIN: So we’re going to recommend it so we can take credit for it.
DR. STEINDEL: Right, exactly.
DR. YASNOFF: Better get that recommendation in fast.
DR. STEINDEL: Can we back up the tape now? And the question that I have is are we going to produce a product from all these hearings? Another report.
DR. LUMPKIN: I’m going to asterisk that comment because we’ll come back to that, let’s get more things on the agenda and then come back to that.
DR. DEERING: With the various demo projects that are coming and certainly AHRQ has the biggest share but CMS has some and even CDC’s public health projects, it might be interesting to get the people who, within the federal agencies, who are spending money on NHII like activities, whether it’s patient safety or what else, to have them come and talk about what is or is not being done within their grant programs that specifically do involve either consumer research, patient involvement, patient engagement, patient, very directly patient centric activities as a means of just helping them identify where those gaps might be and where through slight tweakings or reorientations or modifications that in the work that’s already in the pipeline could strength this dimension.
DR. LUMPKIN: Ok, HHS personal health dimension related activity --
DR. KAMBIC: I’m very much public health oriented and my family is very internet and computer current, and I was thinking, I had never considered a personal health record, I mean why would I want to go on and look at my health data, already have your financial and train schedules and buying stuff and everything else, it’s just another thing to do, and I know whenever we look at health information on the internet it’s very specific. Picking up on Cynthia’s comments, we’re researching some, asthma, my grandkids have asthma, wanted to know more about it, that’s what we look at.
But there are two drivers that haven’t been mentioned is the genomics database, people are going to want to look at their genetic risk factors and give it to your cousins and so on and so forth, so that’s going to be one driver for actually having a personal health record. And then the other possible product is to have a little equation that people can put things in and actually come up with a risk analysis or risk of life expectancy and if you’re going to have smoking, and using seatbelts and some of these other things like blood pressure and so on, or even blood pressure history and you put that in there and you’re going to be able to see gee, I’m only going to live to 70 and I should be able to live to 80 and so on, and that could possibly be an incentive or a driver like you guys were talking about, so that would be a product, you could just have it right up on the internet and you just put in your little numbers and figure out how long you’re going to live.
DR. ORTIZ: I guess I just have a question for you because as we’re looking here and it’s saying discussion of opportunities and priorities for Workgroup’s attention in the coming year, is everything we’re going to do in the coming year going to focus on personal health record or are there other issues beyond personal health record that we can bring up as well sometime today or down the road?
DR. LUMPKIN: That will actually be the last type of, we put this one to bed.
DR. ORTIZ: Ok, thanks.
DR. YASNOFF: That relates to my comment as well because if you’re trying to prioritize all the activities I would not want the Workgroup to drop follow-up on the measures issue that we discussed earlier today.
DR. LUMPKIN: Anything else on the personal health record? The question was raised about the next report, which is actually -- looking at the items that we are talking about it seems to me that two of them are probably ready for recommendation right now. One is the need for a directory, something that we can put in a recommendation to the Secretary for review by the Committee probably in the November meeting, we’ll try to put some language together in September, unless someone can put it together in time to discuss at our meeting in September. Certainly that’s something that could be done.
The second is the issue of personal minimal health information document, I think that’s, I think we’ve had enough discussion we could probably put some language that also would be made as a recommendation that this is something that should be developed and supported --. The research agenda I will not see as, I’m going of going through this list and thinking that I’m not seeing a next report yet. I think the research agenda, we ought to hold a hearing and then make a recommendation after that hearing, that it really doesn’t lend itself to waiting to try to put together a report.
I think the business, cultural, financial barriers to provider participation, that may start us in the process of developing a new report as we conduct a hearing on that. The conceptual model, as I think about the only part of which David’s discussion that I could take away because he said it in such a way that I’ll have to look at the minutes or something to understand it. Not that I disagree because it was really deep, it was good, but I can’t paraphrase it, which is why we’re glad you’re here. So I think within that regards we may be working towards a next report but I’m not sure that it’s imminently on the horizon. And I’m just throwing that out, if people disagree, or other thoughts, please.
DR. STEINDEL: No, I totally agree, just have a question, I think this is kind of for David, but when I was hearing him talk about the conceptual model I was envision a lot of what’s contained in the present IOM report on EHR, because it shows a lot of overlap between the various care categories that they differentiated. And so I think that report can serve as a starting point to developing the comprehensive model.
DR. BOWER: You had opened this section by saying that we weren’t going to look just at the personal health record but the personal health dimension, but we can see how easy in the last couple of hours its been to keep sliding back and talking about a record rather then the dimension, so I’m the last one to volunteer myself for more work because obviously if the Committee or the Workgroup decides to do a report that means something for my workload, but perhaps there’s some utility in a white paper on the dimension so that you can get people up from this, sort of raise their head from the record and think about the dimension and what a dimension would look like as opposed to a record.
DR. LUMPKIN: To put the record within its context.
DR. BOWER: Right.
DR. LUMPKIN: That would be greatly appreciated.
MR. BLAIR: You just want to go on the record with that.
MR. HUNGATE: Just thinking about this discussion, I’m not yet versed in the way in which this Committee operates to achieve its objectives, I’m learning. But John Rother’s presence here today and the head of AARP speaking at Bill’s meeting, makes me think about the huge resource in their membership and the appropriateness and their interest in this personal health dimension. And I’m wondering how we could build on that base of dialogue to advance this particular personal health dimension agenda in an effective way. They have a lot of committees that meet on these things, are there ways that we could help frame how you talk about this thing in a community? I don’t know whether that’s appropriate to our role or not. That’s where my uncertainty, I’m an old marketing manager, so I think about avenues of distribution of product and there’s a product with the personal health dimension of the NHII --
DR. LUMPKIN: And I’m just a country doctor from New Jersey, so I think that, I don’t know the answer to that question and I think it’s one that’s entreating me we ought not to lose as we move forward. I will, however, comment that we are actually already utilizing input from their members, since I’m a member.
MR. HUNGATE: And I am.
DR. LUMPKIN: And Simon is.
DR. YASNOFF: I don’t think the Committee members all disclosed that conflict of interest. I wanted to take note of the fact that I think as of this November it will have been two years since the original NHII report was issued, I believe that’s correct. And I also recall, and my memory isn’t as good as it once was, but my recollection is that in the transmittal letter that went with that report or in the introduction to that report, it says something to the effect that, yes, thank you, you might want to check me on this, it says something to the effect that we’re making these recommendations and we’ll be monitoring what is done. And so it strikes me that after two years it might be appropriate to go back and review the recommendations and not necessarily write another report but perhaps write a letter saying Dear Mr. Secretary, you’ll recall this report two years ago and we applaud your efforts A, B, C, and we note that additional things need to be done X, Y, Z. And so as to essentially look at and keep the attention focused on those original recommendations, and also I think frankly a lot of those recommendations have been taken and the Workgroup, rather than being silent on that, ought to be vocal and provide positive feedback.
DR. LUMPKIN: Ok, we’re kind of getting into the second part of the agenda, so the other tasks that we have are, one is to --
MR. BLAIR: Do you need members of the Committee to support Bill’s suggestion to us? I didn’t hear a reply to his suggestions, I think it was an excellent suggestion.
DR. LUMPKIN: Actually I was working on that. I was listing the other activities that I have on the list other than the personal health dimension, I think we’ve identified some activities for personal health dimension in the coming year. The other activities are the measures, that we want to get out and refine. The updates, that may be the best way to describe what Bill’s suggestion is, which I judge from, what you could not see Jeff was the number of people who were nodding their heads in agreement --
MR. BLAIR: Even when I’m there I miss that.
DR. LUMPKIN: Let’s see, measures, the update to the report, I would like to toss the issue of the population health dimension, we’ve done some status reports, we probably ought to revisit that again to where it’s going. I have a bit of concern to the extent which that dimension is being built out as robustly as we would have hoped with the bioterrorism money, we may want to hear about that.
DR. YASNOFF: I would suggest, I don’t know where on that list you have this discussion of incentives and barriers and so on but I would suggest that while that clearly is very important to the personal health dimension it’s really important to all the dimensions and I think it would be very difficult to separate the incentives by the dimensions, and so that’s really an issue that ought to be considered more broadly in terms of its impact on NHII overall.
DR. LUMPKIN: Well I think maybe we should have a little discussion on that. My response is that, the problem is is that, well, I think that there are some unique barriers and all sorts related to personal health dimension. My impression is is that as we’re addressing the development of the electronic health record, which really falls within the Standards and Security Committee’s preview, that the issue of barriers probably is something that would be important to be discussed within that venue. What we’ve tended to do as a Workgroup, and I think that to some extent there are many issues that are very pertinent and timely issues related to race and ethnicity that the Population Subcommittee is doing, ultimately I think that it would probably be more appropriate for them to start gearing up to address a lot of these issues related to the population health dimension. They’re not in a position to do that so that’s the reason why I’m suggesting that for our agenda, so to some extent, after we get, we look at some of those pieces of the barriers within the three dimensions, at some point we need to as a Committee come together and sort of pull that back together. So I think it’s a good suggestion, I just think we need to approach it in a sort of a methodological fashion.
DR. STEINDEL: Simon, I have a question on measures, not Simon, wrong Committee, when you mentioned more work for the Standards and Security Subcommittee that’s when my mind clicked into another area. John, when you mentioned measures were you talking about a hearing on what measures we need or some actual recommendations on measures? I heard both things mentioned earlier.
DR. LUMPKIN: I think we discussed a hearing on the measures at some point.
DR. STEINDEL: That’s what I thought also, I just wanted to make sure that that was what you were talking about.
DR. LUMPKIN: And I think that we need to have some feedback from the Department on when it’s going to be most appropriate for us to do that because we should hold no hearing before its time. It’s a matter of getting those measures in shape that they’re willing to put them out there and there needs to be some sharing with some of the internal partners within the Department, other partners within the federal government, before I think we start bringing them out for a public hearing.
Ok, so there’s not much room left on this plate, in fact it’s overflowing. Do we have anything other else to put on our plate?
Well, I would like to start off by thanking our guests for -- Marc are you still there?
DR. OVERHAGE: Yes, I am.
DR. LUMPKIN: Ok, well good, because I happened to pick exactly the same moment that both Ed and David decided that they needed to take a quick break. To come to the conclusion of the meeting and take this as an opportunity to thank you, Marc, and I will mention it to Ed and David when they come back, for taking the time to really help us think through these processes, it’s been a very useful thing for us to have experts in the field participate in our deliberations.
Thank those members of the Committee who are not completely officially members of the Workgroup for your input, and of course by showing up that means that you are now, but since all members of the full Committee are invited to any of the meetings of the Subcommittee it doesn’t really mean that much but we appreciate you being here and helping and of course, always to staff from the Department who without whose efforts the work of the Subcommittee and Workgroup would not be impossible. I think unless we have anything else on our agenda it’s about time to adjourn now that Marjorie is back.
DR. DEERING: Which were her assignments again? Could we repeat those?
DR. LUMPKIN: Oh, she’s got a ton of assignments. So I will mention to David except he wasn’t here that we did thank him when the meeting was adjourned. Did we set up another meeting?
DR. DEERING: We have just our usual back to hour and a half in September.
DR. LUMPKIN: And we’ll have our letter and perhaps we may have a couple other recommendations that might be ready for the Full Committee.
DR. DEERING: We only have one hour, 4:30 to 5:50, 5:00 to 6:00.
DR. LUMPKIN: We’ll have to efficient. Ok, we stand adjourned. Thank you.
[Whereupon, at 2:41 p.m., the meeting was adjourned.]