[This Transcript is Unedited]
National Committee on Vital and Health Statistics
Work Group on National Health Information Infrastructure
December 16, 1999
Humphrey Building
200 Independence Ave, SW
Washington, D.C.
Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, Suite 160
Fairfax, Virginia 22030
(703)352-0091
List of Participants:
- John Lumpkin, M.D.
- James Scanlon, M.D.
- Barbara Starfield, M.D.
- Jeffrey Blair
- Maureen Willimss, M.D.
- Wayne Brandes, M.D.
- Daniel Friedman, M.D.
- Mary Jo Deering, M.D.
- Marjorie Greenberg, M.D.
- Steve Seidel, M.D.
TABLE OF CONTENTS
- Call to Order
- Discussion on Dimension Papers
- Personal
- Community
- Caregiver
- January Partnerships Conference
- Progress on Sections
- Revise Draft Outline/Insertion of Privacy and Confidentiality, Verification, Opt In/Opt Out Policies in Narratives, and Review Process
- Web Resources
P R O C E E D I N G S (10:07 a.m.)
Agenda Item: Call to Order
DR. LUMPKIN: Good morning, everyone. I'm so pleased to be here. I had a little bit of a bug last night, and I'm not sure about today. That is only important because I was tired when I set my alarm last night, and I think I set my alarm for 3:30 in the afternoon instead of 3:30 in the morning. So when I woke up at 5:20, my flight was at 6:30 from O'Hare. So anyone who knows Chicago -- and I made it.
DR. DEERING: Steve Steidel called. He is in a cab, arriving momentarily.
DR. GREENBERG: Who is?
DR. DEERING: Steve Steidel.
DR. LUMPKIN: So I'm here and pleased to be here. I'm just going to give Steve a few minutes. Maybe we can get some preliminary stuff out of the way, and then we'll go through introductions.
The caregiver dimension. Jeff, you sent us a new copy yesterday.
MR. BLAIR: It really wasn't a new one. What it was, I noticed that the last one that had been distributed was November 8. I had made an update on November 9. Barbara just mentioned to me that -- I think you had a couple of minor things you wanted also to add to it?
DR. GREENBERG: I went over it yesterday on a long plane ride. I read this thing from the U.K. on the episode of care approach. This is actually not an episode of care, that was the wrong word, which they admit. But it really stresses the need for consistency across the continuum of care. I've got that in the document, the fact that the core elements need to be the same, but I think if we can just put in a few little extra words, --
MR. BLAIR: Well, that's good, because I printed up what you had last night as I was leaving the office, what I got. I was going to compare the two versions on the airplane, but part of my getting up and leaving was, I only took what I could find very quickly, so I have not had a chance to go over that.
DR. GREENBERG: I seem to have your 11-8 in here, so I put it in the packet.
MR. BLAIR: For some reason, I don't know why -- that 11-8 should have been 11-9. The latest one was 11-9, which is what I sent out a couple of days ago.
DR. GREENBERG: I guess I didn't get it.
MR. BLAIR: I'll send it again.
DR. LUMPKIN: So we'll just operate on that, because obviously we are not carrying the final document. I think the issues that we need to address are just some minor ones. You have the leeway, Jeff, to say, oh, I fixed that.
MR. BLAIR: Does this mean I have to assume my irresponsibilities?
DR. LUMPKIN: No, because you fixed it.
DR. GREENBERG: The personal health, he doesn't have a date on it. Does anybody know what the date on the last one was?
DR. DEERING: It was late October, as I recall, looking at what my staff put together. I don't think there were a lot of changes circulating in that. I don't think we got a whole lot of comments from it. So let's consider it October something.
MR. BLAIR: The last copy that I had of that was still referring to it as the personal health view, PHV. So we don't have a later version that refers to it as a dimension.
(Simultaneous discussion.)
DR. LUMPKIN: Well, let's get started. I'm John Lumpkin. I'm the committee chair. Then we'll go to my left.
DR. GREENBERG: I'm Marjorie Greenberg, the National Committee on Vital and Health Statistics, CDC, and the executive secretary to the committee.
DR. STEIDEL: Steve Steidel, working staff to the committee from CDC.
MR. BLAIR: This is Jeff Blair, and I'm a member of the committee.
DR. ZUBELDIA: I'm Kepa Zubeldia with Envoy Corporation and member of the committee.
DR. STARFIELD: Barbara Starfield from Johns Hopkins University and member of the committee.
DR. ADLER: Jackie Adler, ACHS.
DR. FRIEDMAN: Dan Friedman, Massachusetts Department of Public Health and member of the committee.
DR. DEERING: Mary Jo Deering, Office of Disease Prevention and Health Promotion, staff to the committee.
(The remainder of the introductions were performed off mike.)
DR. LUMPKIN: This has certainly been an exciting year, and this is my last meeting of this committee this year, also this century, millennium. It is kind of fitting that we are going out in style with some of our work that will be forward looking. Part of our challenge as a full certain will be to figure out how to put this together with everything else we are doing, as well as the work that Dan has been doing such a wonderful job at with health statistics for the 21st century. So this is certainly a very important endeavor.
We are willing to -- we have an agenda before you which we are roughly going to stick to. I am willing to put back the January conference presentations. Maybe we can get into the meat of the meeting and then come back to that, because I think it will be a little easier to discuss that presentation that we have when we are clearer on what it is that we want to present.
Agenda Item: Discussion on Dimension Papers
Everyone, I assume, has had a chance to look at the dimensions papers, is that a fair statement? We have all seen various iterations of those. I thought maybe I would spend a little bit of time, as I was going through the documents, to maybe pick out some of the overarching issues that we may want to address.
What we are focused on doing is, by the February meeting of the committee, we need to have a draft of the document that we can present to the full committee, and we can get a confirmation that yes, we are moving in the right direction.
At the June meeting -- is there a meeting in between then?
DR. GREENBERG: Not of the full committee, no.
DR. LUMPKIN: At the June meeting, which is also the same day as the 15th anniversary symposium, where we will be presenting the document, we will present the final document for approval of the committee.
It would be my plan, if this is agreeable with the work group and the full committee, that we would not see that final document be a final document; it would in fact be the draft for discussion. We would look at the symposium as unveiling this vision,, and would follow up perhaps with an open discussion, maybe some hearings, depending upon how we feel engaged at the public interest, but certainly with the intent that we want to provoke discussion. Let's get as many comments as we can, and then following that in the latter part of the year 2000, adopt a final version of the document. The symposium being at what date?
DR. GREENBERG: That is the afternoon of June 20 at the National Academy of Sciences.
DR. LUMPKIN: Are people comfortable with that view of what we are choosing as a time frame?
DR. DEERING: My only observation is that within a year, the technology will have changed dramatically, and we will need to be especially alert to make sure that we are open to anything that either enhances or will be taken over by events.
DR. LUMPKIN: And actually, that will be a good test, because to the extent that we have anything that could be outdated within a year, we will have missed our mark on this project. We are not looking far enough out, and certainly we are not choosing to be technology specific.
Obviously, there will be some important events. The final recommendations from whatever your work group's name is, Jeff, we'll have that final work product. That will be out there, but there will be a tremendous amount of things . We'll have some idea what will have happened with privacy. We will have final rules published ideally on most of the transactions, and we will be within the full committee and the transition period, because we will have accomplished most of the immediate tasks of HIPAA. But there are many provisions of HIPAA that are less proscriptive which we will have to tackle, what transactions or other kinds of sets of standards ought to be adopted. All those are issues that we need to address. I think NHII will help us see where those things fit within our vision.
So there are a number of pieces of discussion that will be occurring throughout the next year that will fit very nicely within this report.
Perhaps we should have a little bit of discussion of the audience. Who do we think we will be writing this document for?
DR. GREENBERG: I think we are writing for the same audience that the Institute of Medicine writes. That is probably not very helpful. But anyone who will listen, because it really does affect everyone.
DR. STEIDEL: But I don't think we are writing it for the general public.
DR. GREENBERG: You think so? I think maybe we are.
DR. STEIDEL: The knowledgeable public. I think for the knowledgeable public, but not the general public.
DR. LUMPKIN: Let's start looking at subsets and sets of the universe. Obviously, the universe would be the public as a whole, John Q. Public. Within that is a subset of those who we will call knowledgeable, and then we will have to define what we mean by that. But that will determine the amount of background material we will have to include, as well as the definition of terms and the reading level which we want to gauge the output of the document.
So if we are gauging it at John Q. Public, I think that would be one type of document. Perhaps we may want to think about -- a lot of times in these documents, you do an executive summary, but we may want to think about a public summary to craft our message, because I think there are important issues that we may want to raise, and that may be part of what we do between the June meeting and when we produce the final document.
MR. BLAIR: Could I venture a way to maybe arrive at an answer?
DR. LUMPKIN: Please.
MR. BLAIR: I think I would probably step back to wind up saying what we want to achieve. I think that we would like to have national support for going forward with the national health information infrastructure. So I think that in some ways, we need to have a document the public at large is able to at least read. But I think maybe more importantly, we need to address the decision makers in positions of public policy, because I think a lot of these things will require -- if not direct additional funding and other support with other bills i Congress and other administrative actions by the executive branch of the government, and they would need to be able to guy into the concept of a national health information infrastructure. So on the second level, aside from the public at large, I tend to think of the decision makers within state and federal government, public policy makers.
DR. GREENBERG: So to follow up on what Jeff was saying at the Data Council last week, which John was at as well, and Ted Shortliffe spoke about medical informatics, health informatics, and basically said that in the national information infrastructure, the department is not really seen as a significant player.
MR. BLAIR: The department?
DR. GREENBERG: Health and Human Services, which speaks to the health dimension maybe not being that big a player. So I think that any --- and he actually referenced the work that the committee was doing, so I do think the department -- and that is a subset of decision makers, policy makers, as you mentioned, and also because this committee advises the department, obviously, is an audience, though clearly the audience is much broader than the department.
DR. STARFIELD: We are a committee that is advisory to the Secretary, right?
DR. GREENBERG: Right.
DR. STARFIELD: That doesn't mean that we can't publicize what we do.
DR. GREENBERG: Oh, of course not, no. But I would just saying that one of the audiences is the department, if you feel there are things that the department needs to do to be more of a player or to show leadership or whatever.
DR. STARFIELD: I think the question is a really critical one, because it determines what we do in terms of publicity. I have been absolutely astounded at this Institute of Medicine report on errors in medicine. It just so captured everyone's attention, just by the press releases. Within two days, they were sold out of the first printing of a draft copy.
Maybe something like that is so non-controversial and so dramatic, that it will capture everybody's attention. What we do is likely to be a whole lot more controversial, I suppose.
DR. LUMPKIN: Yes, but there are no dead bodies.
DR. STARFIELD: No what?
DR. LUMPKIN: Dead bodies.
DR. STARFIELD: No dead bodies?
DR. LUMPKIN: Yes. Our document is liable to be controversial amongst those who are interested, but trying to communicate that to the public and why it is so controversial is beyond the capability of any reporters. Whereas, an issue of, your doctor could be messing up and you're at risk, just captures it.
So I don't see us trying to shoot for a kind of splash. This is probably the first time that an Institute of Medicine report has had a response by the President within five days. I don't think we should expect that kind of splash.
But the issue -- and I am kind of bridging off something that Jeff and Marjorie are saying -- maybe what we should focus in on is to look at having two tasks. The first task is to try to be in a place where a convergence of views that are held in those in the know, of what needs to be done, and essentially then taking that and seeing our number-one customer for this document being HHS and the Secretary.
So rather than trying to convince the broad segment of what needs to be done, it is really convincing the department that they need to be the leader, if it is going to happen.
MR. BLAIR: Can I piggyback on that thought a little bit?
DR. LUMPKIN: Please.
MR. BLAIR: In terms of them being the appropriate leader for this broad national concept for health care, one of the things that I think the IOM report may teach us is that, if you have something that could be quickly conceptually understood by the public at large, then it does get the attention of decision makers. Maybe one of the things that is hard for us to do, because we know all the complexities of a national health information infrastructure, but nevertheless, I think one of the tasks that may be helpful to us is for us to attempt to provide an arm to the Department of Health and Human Services with a brief concise vision that they could lead with as they approach Congress and as they approach the public at large, to try to at least have something that is a positive image of a national health information infrastructure, and then of course we've got the detail needed to support that. But I think they probably need that.
DR. DEERING: I wanted to raise an issue of timing.
MR. BLAIR: I couldn't see facial reactions on that.
DR. DEERING: No, I think that is very good.
DR. LUMPKIN: I think Kepa had his hand up.
DR. DEERING: Oh, I'm sorry.
DR. ZUBELDIA: I think another audience for this would be the users of this document. The community health dimension lists some of the users, state agencies, federal agencies, schools, providers, legislators, and we need to keep those in mind too, because in the end, they are the ones that are going to need to understand what it is this document says.
DR. DEERING: Our office is getting ready to launch Healthy People 2010. Even though we are launching it next month, alas, if we make it, we are thinking ahead frankly to political transitions.
The reality is that a year from now there will be a lame duck Administration, and it will be about March or April before any new administration, even a relatively continuous one, will really have its new people in place and be looking around. One thing one very smart person taught our office was, always have something really wonderful ready to hand off to a new administration about April of their first year, because they have found where the pencil sharpeners are, and they've got their desks straight, and they can make the email work, and now they are looking for something they can stand up and take credit for.
So I was saying that either you give it to the old outgoing Administration or you wait to give it to the new, incoming Administration.
The second point that occurred to me, and this was piggybacking on Jeff's point, and it is a pickup between your suggestion that HHS is our primary audience, and Jeff saying that the public can be the bottom-up pressure to get the leaders' attention. You had pointed out quite rightly earlier that by the time we get this out, a lot will have happened. So we may not be controversial, for one thing, and secondly, there may be other things that we can be springing off it by then that have it built out of the medical error, the privacy regs. There could be quite a tide that we could be appearing to move with very nicely.
DR. LUMPKIN: First, let me say that I think your first comment is one that I think should alter our time frame, to look at adoption at our first meeting in 01, which will be the first meeting right after the inauguration. I think that will give it a chance to -- if we adopt it at that meeting, February, whenever that would be, to give us a little time to write up the letter and send it, it would hit around late March, early April. We should probably time it for when the new Secretary has been appointed and had a chance to figure out where the bathroom is.
So I like that timing. The second is, the issue of who we want to direct it to probably relates to recommendations. We may want to look at this process as being in two parts. What we are going to gear to is a document in June that states the problem and describes it. We use the hearings and the subsequent activities and response to formulate the recommendations.
When we suggest what it is we are talking about and then we conduct the hearings, the questions that we would want to ask from those who are the involved players, what is your role, and what do you think the role of the department should be if it will be the leader in creating the conditions in which this can be implemented.
One of the issues that came up to my mind in reading all of these documents and going home and thinking about it is that for privacy concerns and with the personal health dimension, there are two ways this will be stored ultimately, if this comes to pass. One is, I store it myself and the second is that I entrust it to a trusted authority, public, private or whatever. What would be the parameters of operation? What would be the safeguards for an entity to become a trusted authority? Because there will be charlatans, and there are already, who put up websites and say, put your information here. Is there any standard to hold them to?
So one of the recommendations may be that the department would create the -- Congress may need to pass legislation and the department need to promulgate roles that would allow this piece to be regulated, to assure that if somebody has their health data in a trusted authority, that the trusted authority is in fact doing something to be trusted.
So that is just a very specific example of how we can develop what we conceptually believe needs to be done, which would be the first phase, and then the recommendations to the department and Congress are what needs to be done to implement.
DR. STARFIELD: But we have only done the second. That is all we have, is the second. We haven't done the first part at all. Why do we need all this? We really need over the next six months to develop a basically IOM report on why we even need this coordinated information structure.
What was so striking about the IOM report is, the whole thing was basically on two studies, the New York study an the Colorado study. They had bits and pieces of other studies that didn't relate to errors, had more to do with adverse effects.
So it seems to me that we could even build on that report to document why it is we need this thing. But we have got to lay it out so it is pretty dramatic, because otherwise we'll have a solution without the problem.
DR. FRIEDMAN: This is partially reflecting what you said, Barbara, and partially reflecting what Jeff said, that in some ways we are talking about two slightly different things, slightly different but very much overlapping. One is trying to present our case as positively as possible and the second, trying to avoid being roadkill in the process.
We don't want the idea to become roadkill. I do think that that is frankly a real possibility. I think that it is something that if we were going to value highly not becoming roadkill, one of the things in addition to what Barbara is suggesting, which I completely agree with, something else I think we need to do is, as early as possible invite the kind of critics and criticism, get that earlier in the process rather than later in the process, and perhaps even get that as early in the process as possible, even before we even necessarily have something between now and June, rather than waiting until we have something that we are formally presenting.
DR. LUMPKIN: I think within the time frame, once we have got the conceptual approval of the committee in February, that is an opportunity to send it out to a fairly broad group for comments that will be used to refine the document for June.
Again, I think my inclination would be to be light on recommendations, because I think our job after June will be to formulate those recommendations, and heavy on the questions of, from your perspective,, is this what we need, and why do we need it.
DR. FRIEDMAN: And what are you worried about.
DR. LUMPKIN: And following from what Barbara said, and I really kind of like that, there are a number of things that we can pull together on why we need this. They tend to fall into three categories, surprisingly.
The first is, why do we need this from an individual's view? Because are clearly wanting to get more and more involved in medical decision making, and they don't have the tools for which to do that. When you have an environment in which people trust an anonymous source on the Internet more than they trust their family doctor, that indicates there is a clear problem. I think we can find documentation and examples to use to illustrate that.
The second is from the caregiver viewpoint. We need to have better access to the kinds of decisional support which is clearly documented in the report that IOM just released. There are some other things we can pull out to justify this. But all that folds in. So that is another aspect of care interaction.
So people want more stuff, but they want to protect their privacy. We need to provide better tools to the providers to have better quality. People want to be able to know the quality of their providers, which is another desire on the part of the individual.
Then third, within the public health system, as evidenced by a response to bioterrorism, to other areas, our system needs to have better information quicker, in order to respond to public health threats. It is just fascinating, because that does split in the same divisions for which we have created our dimensions.
MR. BLAIR: I'm going to struggle to try to express this idea. When the Institute of Medicine had its 18-month study in 1991, which resulted in a statement of division in the patient based record and essentially technology for health care, it was a milestone. While 10 years later we can't wind up saying we have it and it is in place, it did set forth many things to happen. Many vendors during the '90s began to invest in those systems. Many providers began to invest. It turned out to be a much larger task than many people envisioned.
Some of the administrative simplification provisions is a reflection of some of the things that were set forth by that vision.
The impression that I have is that even though we just did this stab, those three dimensions of a national health infrastructure is the first time in 10 years that I have seen -- I'm not sure everybody will agree with me on this, but it is my perception -- this is the first time that I have seen any organization step forward and say here is the updated broader, more comprehensive vision set forth 10 years ago. It may be concise; it is only 15 pages or something like that.
But to be honest with you, I think it is profound. I think that we may need to do -- or someone may need to do a lot of things to package it and get it visible and get the support and everything else like that. But I think that there are some really important conceptual material in the stuff that we have developed. One of the things that it did that the original study didn't quite do, the original study was like the tip of the iceberg when it wound up saying computer-based patient records systems. When you read it carefully, you wind up realizing it is talking about an infrastructure, but it didn't define it that way.
This group with what we did wound up saying national health information infrastructure, which is an expansion of that work. This may have been one of the reasons why there was only partial success from that study. When people saw computer based patient record systems, they started approaching it as a product or a system and it was so much more.
We have now redefined it as an infrastructure. An infrastructure is a sophisticated concept that is more difficult to give people to embrace. You need executive leadership, a president, some visionary, to be able to galvanize the population at large that we need an information infrastructure for all of health care. It is much more than a single project or set of projects, because it involves laws, it involves standards, it involves technology, it involves people working together, all of the things that are in the documents there.
So maybe the conclusion that I am coming to here is just for us to maybe realize we have a great deal of value in what we already have and start thinking of it as a very important foundation for what we go forward with, not just a bunch of papers. I did my best to try to express those thoughts.
DR. WILLIMSS: I totally agree with Jeff. The only thing I would suggest is we also need to be prepared with the timing that you had previously addressed. If we put out a draft report of facts, not the recommendations, next June it is very likely that this issue could achieve a great deal of attention in the media because of it being an election year. This is a hot topic.
I'm not saying that we should change our timing whatsoever, but I do believe that we need to be prepared for it.
DR. STARFIELD: Who is going to do the work?
DR. GREENBERG: That is the next question. Going off what others have just said, in a sense I think that although this overall effort may not come out with direct recommendations in June, the fact is that the plan is to bring for approval in the committee in June the CPR work group recommendations, which are certainly a significant piece of this overall infrastructure. In fact, it allows you to bring out those recommendations as fitting into this infrastructure, this broader view that Jeff was describing.
So I think you would want to get behind those recommendations which do have to go to the department by August. What I hear is, yes, this Administration may be moving towards lame duck status or may already be in it, but the Data Council -- everybody wants a legacy, too. I think that there is an interest in at least putting a stake in the ground perhaps, even if they don't have an opportunity to carry it forward.
So I think that the CPR, the timing of that is actually very good. Those recommendations passed in this broader context could be quite important even this summer.
DR. LUMPKIN: There is a concept in the emergency department, we used to call it a two-fer. That is when you have one slot in the room and you walk in, and there are two kids in the room, both of whom are patients. So you get two for the price of one visit.
I think we can make this a two-fer also, because we can potentially get some attention when we unveil it in June. Then when the final report is done the following winter, get some attention probably from the key audience at that point, which is the Secretary, the incoming Secretary.
Now, in June in the best possible scenario, it gets enough attention that the two candidates sign onto it, saying this is something important and something we want to deal with in the incoming Administration. It will give us time, based upon that, to actually put it into detail.
Let me say how I am thinking of the report as having roughly four or five sections. I think we can do the first three. The first one is, why do we need it, the problem statement. The second one is what it will do. What it will do is described in the three dimensions. So we need to do some supporting language to pull it together and some overarching issues will need to be discussed.
The third is, what is needed to enable it, what kind of standards, national data model, those kind of things, an infrastructure for trusted authorities, for privacy and security. I think we can do that by June.
Then the fourth and fifth, which is what is the role of the department and what is the role of other players in bringing about this vision. That would be what we would look at from June until winter. Then those two pieces at the end would be finalized, and those would be the recommendations.
DR. STARFIELD: Recommendations means text implementation?
DR. LUMPKIN: Right. Does that work for folks?
DR. DEERING: Maybe you could also amplify, when you talk about hearings, I know that often the ones I am familiar with, they are here.
DR. GREENBERG: We could have them elsewhere. In fact, we would want to.
DR. DEERING: I was going to say, picking up on the comments about having national attention drawn in June to this issue, that actually helps promote the dialogue. It is not just the candidates; it would be great if the local press started picking it up and saying, gee, what is this idea.
So I just wanted to observe that that is another good springboard for getting a much broader attention.
DR. STARFIELD: There the question comes in, the extent to which you want this and the health statistics vision hearing to be on the same parallel paths, in some cases together or definitely separate, because the timing is similar, too. Thoughts on that?
DR. FRIEDMAN: I would think initially, if we formed tracks, not necessarily together, certainly hopefully ending up at the same place. But I think that the health statistics piece is so much more specific.
DR. GREENBERG: I know. I'm just saying, you are also talking about going out into getting outside the Beltway, even outside of places like Chicago and New York. I have been pushing for Fargo, North Dakota, but what can I say? There are some resource constraints. You'd probably want to go to different places, but maybe somehow use these opportunities to cross fertilize.
DR. LUMPKIN: I actually see, as we try to fit those together, just as I see what we are doing about the computerized patient record enhancing the caregiver dimension. The health statistic is really enhancing the community.
When we issue the final document, I would see the recommendations on privacy and confidentiality has being an appendix, the recommendation from standards, recommendations from the computerized patient record, and from the 21st century, all of it being appendices to the overall document. Anything else that we have produced that fits within this context, if we have any progress on functional status, our document on the insular areas.
MR. BLAIR: One of the things that I think is going to be a real challenge for us is, I think for the last six years, as we have begun to look towards what kind of legislation do we need to protect the privacy and confidentiality of health care information, most of us, even those of us who thought we were far-sighted, we thought we were beyond looking at things from a paper-based form, and we were looking at it from an electronic form, and we were envisioning computer based patient records.
Well, this national health information infrastructure with these three dimensions, I think that this makes many more demands on what we need for legislation to protect privacy and confidentiality of health care information than we have been envisioning up until now. I almost feel as if it might be helpful if -- is Kathleen Frawley or Richard Harding or Bob Gelman with us?
DR. LUMPKIN: No.
MR. BLAIR: I feel like we really need to share this information with them, because they may need to do some work to come up with a broader set of visions and recommendations than we have been doing so far.
DR. LUMPKIN: Not only that, but I think the standards and security piece. Part of the role of the security piece is to enable the privacy and confidentiality, and those two communities are going to need to interface to think about what needs to be there as part of the security infrastructure to enable what the privacy and confidentiality is perceiving as should be the functionality of this system.
So I think that is an excellent point.
DR. FRIEDMAN: Jeff, I agree. I think that there are a couple of potential public vulnerabilities that we have, that are really true. One of them is obviously the great big government database in the sky, and the second is the individual identifier issue. I think that to the extent we can acknowledge those and any other huge points of potential vulnerability, even if they don't reflect what we are thinking, and try to decide how we can minimize those fears and minimize the likely misrepresentations. I don't mean to sound overlay paranoid, but I really am concerned that we could nail this in June, and the reaction could be, oh my God.
DR. DEERING: One of the things that I heard Jeff say is that in fact, what we are looking at goes well beyond a systematic top-down, inside out system of health information. Among the developments that I think is going to overtake us is the fact that people are voluntarily putting their health information on line now, and that is being picked up in the headlines, too. There are lots and lots of talk in USA Today and in Time magazine about it; people are doing this already. So in a way, they are already fighting that battle for us a little bit.
So to me, it is just a question of whether we can carefully calibrate all this message to that message.
MR. BLAIR: Can I respond to Dan's comment a little bit? I think you are absolutely right, that there are folks with severe concerns. If it is possible -- it may not be possible, but if it is possible for us to -- I'm not a politician, but you wind up seeing things characterized almost in reverse.
We may have an opportunity to set this thing forth virtually as a vehicle for comprehensive privacy and protection of health care information. The fact that it does all the other things we care about, maybe that is going to be almost secondary to why political acceptance. But normally I think we wouldn't do it in that way, but maybe in terms of political realities, maybe that is an opportunity we have as a vehicle which could take this forward.
DR. LUMPKIN: I think that you are raising very good points. It emphasizes certain pieces that we will need to be very explicit about, as opposed to implicit, in the document.
As I think back on the unique identifier experience, one of the problems is how we look at implementation. It gets to the issue of collecting what comes out of the personal health dimension, which is, people will want somebody to hold on to their electronic medical record. It is not going to be government. Based upon that, a unique identifier will develop, and the role of government may not be to issue a unique identifier, it may be to define how the identifier is created, and how it functions, and how it is protected, for those who choose to have one.
So the role of government may be to regulate the industry that creates these reservoirs of personal health information and creates these reservoirs of personal identifiers.
So for those who choose not to, they don't have to participate. But for those who choose, here are some protections. I think if we can approach it that way -- but we do need to be fairly explicit also about where the data is going to be collected. Basically, we need a statement of where the data is going to be kept. It is going to be kept by providers of care and by individuals, and by governmental agencies. But the overarching thing is, it is going to be kept exactly where it is kept right now, except better, kept with greater protection than it is now.
DR. ZUBELDIA: In a sharable environment.
DR. GREENBERG: I think February 25, the privacy and confidentiality subcommittee is planning to have hearings related to health data on the Internet. I wonder if there is some way this group might think about questions or issues or people or whatever that would be useful to incorporate into this project in those hearings, or at least want to discuss them with them.
DR. LUMPKIN: I think we could suggest that there be certain questions which my guess is, they are going to ask; what safeguards should be in place for people who choose to keep their health data or have their health information be kept through the Internet.
DR. GREENBERG: I don't know if they are already looking at electronic data interchange on the Internet from a business point of view, or whether it is just solely looking at personal information of that type. But I think some dialogue would be good, because it seems their timing is good if they are having those hearings.
DR. DEERING: Does it ever happen that a representative from one committee testifies at another? Because maybe that is also something that you might consider doing. You will have had just a month earlier the presentations at the conference. You will have had some feedback, and even if it is not official, even if it is just a form of sharing.
DR. GREENBERG: Kathy Coltin has provided testimony, not in a role as the committee, I don't know. But there is nothing to stop it.
DR. LUMPKIN: Right, so we can play around with that. I'm trying to move ourselves forward.
DR. ZUBELDIA: I think a component that needs to be brought into this subcommittee up front is Dr. Harding or Bob Gelman, some of the more privacy advocate side, rather than seeing it as a draft when the draft is ready. I think it is easier to get their buy-in if they participated. That would avoid surprises later on, like we have seen.
DR. STARFIELD: To what extent has Richard had input into these drafts? I know he has probably seen them, but has he been active?
DR. LUMPKIN: No, I haven't seen too much data flow, but we can work on that. We have also got another --
DR. GREENBERG: And Mark.
DR. LUMPKIN: And Mark. So I think we may specifically send a communique to them, requesting that they look at it within that context, actually the full subcommittee, as an opportunity for them to suggest the infrastructure that they would like to see it protect health information.
DR. STARFIELD: I think especially since Richard did elect to be on this work group, too? I think especially since Richard did elect to be on this work group, he is absolutely critical.
DR. LUMPKIN: Right. Let me perhaps suggest that before we go into the papers themselves, to look at some overarching issues that we would want to -- I'm of two minds. One is, we could dive into the documents and then go to overarching issues, or we can talk about overarching issues and then dive into the documents.
DR. GREENBERG: Sink or swim.
DR. LUMPKIN: it's kind of six of one and half dozen of the other. Let's go to the documents.
DR. FRIEDMAN: I just have one overarching issue as we go into the documents, I wanted to mention. I'm like Jeff, I think the documents are really terrific.
Having said that, I think there is one piece that we haven't clearly grappled with, which we need to, which is how the three dimensions relate to each other. That is, after you have read them all and said this is terrific, but the absence of saying how does the community health view really relate to the caregiver view, et cetera, I think is something that in the next several months we're gong to need to make explicit.
MR. BLAIR: We did make references between them, both on the benefit side and the function side, and I think even on the data side. So my thought is that you are probably talking about something that is beyond the links that we referenced, is that right?
DR. FRIEDMAN: When I try to remove myself from it, which is difficult, and I have shown it informally to a couple of people who I work with, their reaction was very pragmatically, where does the community health view data come from? Is this caregiver data, is it the personal view data? How do the data get from one place to another? Do the data get from one place to another, or are they different data streams? These kinds of pretty straightforward plumbing issues, in a sense --
MR. BLAIR: When they made the observations, did you feel as if they accepted the concept and they were already getting down to the level of, how do I design it and implement it and get more specific? Were they already trying to go down to the next level?
DR. FRIEDMAN: No, I felt more, given the people I work with, who are primarily in the surveillance business, as it were, I think their feeling was that we can't really evaluate it until we understand more.
DR. LUMPKIN: I think that the issue in the caregiver document -- there is a section that talks about information capture, information storage, processing and presentation. We may want to enhance some of that, but also to look at similar sections in the other documents. That is my thought on it.
For instance, in the personal health dimension, we are getting better. We actually have a term we can all agree on. In the personal health dimension, we don't really mention or discuss the acquisition of community health data.
An example would be the toxin content of the water that you drink, which would certainly be captured under the community health dimension, but would then populate portions of the personal health view.
Let me give a futuristic example. We did a study in Illinois which we called the migration study on our cancer registry. We based upon social security number, which is a gross way to do it, selected individuals who grew up or were born in the South and migrated to Illinois, and compared their rates for various cancers to those who were born in Illinois and lived their life there, and to see if there were differences in rates of
certain cancer, the assumption being that there were different exposures to toxins.
If you live your life under this vision, toxic exposures throughout a lifetime potentially could be documented by populating the personal health dimension with all the sequential community health dimension information that has accumulated. If someone shows that people who worked in and around shipyards where they were doing asbestos development, when you would have the basis for me as an individual to know that all of a sudden, my personal health view would have an alarm buzz, that there is now this new evidence linking there, and maybe I ought to have a more regular visit to check up, because I am now at higher risk for this particular disease.
So that is the interaction that I think we want to talk about.
DR. STEIDEL: I agree that that interaction should happen, but I see the way you are describing it as a push technology, where the community health dimension when it sees something important pushes it out to all people who have that personal view. If the personal views are lying in very disparate data storage areas, we may not be able to do that.
I see it more as a pull technology, where a caregiver who is accessing a personal view wants to see, has this person had exposure, then they have the ability at that point to pull the information in from the diverse community health views.
DR. LUMPKIN: But here is the difference, and this is why I think what we are doing is so neat. It can either be push or pull. Let's suppose I have grown up in an area where there was a Superfund site. I haven't seen the document in 30 years. Healthy male, less likely to have interactions with health care until they reach 50 or 60 and have a health problem. I'm 45, but I've got my own personal health view. That personal health dimension is going to pull that data that may be clinically significant, and give me the kind of alert. Maybe I get my cholesterol checked at the local clinic or the health club or something like that. So I'm going to look at that, because it is going to tell me what my risk is for cardiovascular disease, because I am interested in that, because I'm working out. All of a sudden, an alert pops up saying, evidence has indicated that you may have had an exposure that is of significance. Maybe you should see a health care provider
These dimensions really have the capability of -- for those who have an interest about their own personal health to give them a much broader ability to pull it in.
DR. ZUBELDIA: You could even have a double linkage, where the community health dimension, when something is discovered, could alert all the personal health dimensions that have been in contact with that community over a certain period of time, and send them another --
DR. LUMPKIN: It is more of a handshake than a push or a pull.
DR. STEIDEL: So one of our recommendations -- and this is for our implementation technology, there needs to be that type of communication to allow either a push or a pull or a handshake. So there is an act of communication between the various dimensions.
DR. LUMPKIN: And we have to recognize that -- and this came up in our earlier discussion about one of the downsides of waiting until March -- we may have to revise some things because technology changed. I was telling Mary Jo that if we are not looking far enough out, a year is going to impact our technology. This is something that may take decades to develop. But that is the kind of thing that we need to put out in a vision, so that people can see where it is that we have looked; why does this impact me as an individual, why is this important to me, and the kind of thing I am thinking can really capture peoples' imagination.
DR. WILLIMSS: There are startup companies right now that are looking exactly into building this type of technology, but they aren't there, because the linkages aren't there. Also, the regulations -- they are very, very afraid of what is going to come down the pike.
DR. LUMPKIN: And I think a piece of that is that people would be afraid that somebody is collecting data on me. What we are really talking about is enabling people to collect data themselves, either through a personal repository or through a trusted authority.
DR. GREENBERG: Don't you think there are also concerns about people getting more data than they know what to do with, alarming the public, et cetera? It seems it may have gone beyond that, but where are caregivers in this, if you look at what Steve was saying? That is more the traditional model, the caregiver takes responsibility, pulls in information. Are they threatened by people gathering too much information on their own, or gathering it and then saying I think I'm at risk of this, I think I may be at risk of that, overloading the health care system? Just devil's advocate, but the other side of it.
DR. LUMPKIN: I think the answer is, there is no answer. It allows an individual to define their personal health dimension and what data they see, and what degree of sensitivity do they want their system to respond. Most caregivers, as someone comes in for their annual Pap smear, there is a lot of community health derived information and it is not going to be pertinent to their people. So they are going to need that to be filtered, but the filter will be set depending on the individual person and the individual caregiver and what their preferences are.
It is like a hypertext page. The person who wants to click and get more detail can start mining down into their own personal health information, whereas the average person may just have, it is time for an annual Pap smear, and that is all they want to know.
DR. STARFIELD: So what you are suggesting, if somebody wants to know the history of their past toxic exposures, they could access something about the areas in which they lived from a community health -- you are talking about the person --
DR. ZUBELDIA: That would be one way of linking it from your personal view. You could go and look at the places where you lived, but also, communities could see the people that lived in the community and check it down in the other direction.
DR. STARFIELD: But you could do it both ways, I suppose.
DR. LUMPKIN: But let me suggest that we need to be talking about intelligent systems, so the person wouldn't have to say I want to now look at all the community health dimensions.
DR. STARFIELD: That is what I was thinking. They need something to help them understand this information.
DR. LUMPKIN: Right. They want to say, what -- somewhere int here is a question, what have I been exposed to.
DR. GREENBERG: A lot of people are interested in that.
DR. LUMPKIN: Then they may get a printout saying, those things which raise what level of risk you may be concerned about. There may be a window that talks about relative risks. Am I concerned about things that are more likely to hurt me than getting struck by lightening, yes or no. In which case, if they say no, then it would print up a certain list of exposures. If there are people that are so concerned that they would say yes, then they would get a laundry list.
DR. GREENBERG: I hate to take you off this train of thought, but before lunch, because I'm going to have to leave, I want to get back to discussing how do we get there. We are talking about short-term goal here of getting to the January meeting that Mary Jo has arranged. One month later is the February meeting, at which point you want to have some kind of document that you can get some feedback, et cetera, from the committee, and then get from that point to the June meeting, where you want a more fleshed out document for the symposium, but still not the final thing. So how are we going to get there I think would be worth talking about a bit, agreed?
DR. LUMPKIN: I think we have enough here to start putting it together. We will obviously spend some time on the community caregiver, we will talk about some of the overarching issues we will want to discuss, we will talk about some of the issues related to knowledge management and knowledge generation, access.
But the question is, I think we need a writer.
DR. GREENBERG: Do we want to do the case for this by June? Do we need it by June?
DR. LUMPKIN: Yes, I think we do, someone who can research the literature -- because I'm sure there is an adequate number of studies and documents that are available to make the case why each one of these different dimensions have a validity, and why it needs to be done.
DR. GREENBERG: I don't think it should be structured that way; what is the problem and how can these three dimensions be brought to bear. I don't think we should make the case for each of these dimensions separately. I think we ought to approach it on, what are the problems.
DR. LUMPKIN: But why is there a concern for an individual and caregiver and community approach. I think we can make three separate cases, because they are different.
MR. BLAIR: I think that maybe we would do that, but I think that there is synergy there that hasn't been exploited yet. That may be our vehicle to galvanize support for this whole infrastructure. We could only do things to improve health care that we have never been able to do before when we had these separate models and separate missions.
DR. LUMPKIN: I agree with that, but as I think about the market for this document, we want to give people three roads to get to where we are at with the integrated vision.
DR. GREENBERG: One road.
DR. LUMPKIN: Well, three doors to get into the room. There are people who don't really care about caregivers, and they don't really care about public health and the community approach. They care about individuals, and they need to say you can go into this door, or that door on the right or that door on the left, but you end up in the same room.
So it is taking -- and there may be overlap, and there ought to be significant overlap in making the case. But I think that there may be some error to at least saying, why is this important for an individual, why is this important for caregivers, and why is this important for the --
DR. GREENBERG: What is this? This is the three of them.
DR. STEIDEL: John, to use your analogy you have got to tell each one of the people why it is important for them to go into the room. Right now, they are standing outside each one of the doorways and they have no interest in going into the room. That is what Barbara is saying also.
DR. LUMPKIN: And what I am saying is that we craft the message, which has the same content, three different ways as part of the introductory discussion.
MR. BLAIR: So let me repeat here, let me see if I have locked in with you, because I think what you are saying maybe encompasses what Barbara was suggesting. You are saying we need to show multiple paths for people to get into the total infrastructure, is that correct?
DR. LUMPKIN: Correct.
DR. STEIDEL: I think you also need to tell them why they need to get into the total infrastructure.
MR. BLAIR: That is the key thing, for them to appreciate that the whole may be greater than the sum of its parts.
DR. WILLIMSS: But it is a critical piece, because if we don't do it in that manner, we are running the risk of the whole department being compartmentalized. Once it is compartmentalized, we will never be able to get back to one entity again.
MR. BLAIR: Barbara, did you feel okay with that blending?
DR. STARFIELD: Yes.
DR. LUMPKIN: So that gets us back to, I think we do need a research assistant and a writer.
DR. STARFIELD: These are two different people?
DR. LUMPKIN: I would see the front end more intensive with the researcher and then we need to get the writer started and working, but there may be some ongoing things as we revise the document.
DR. DEERING: One of the things that we are going to be handing out later today and that we have made copies for is on the one hand a dummy of the website we talked about, that has a lot of the resources that you want. It even includes a bibliography that isn't a hot link, it has just got the titles and the abstracts.
So I think staff have assembled a lot of bits and pieces, or at least the pointers.
DR. BRANDES: So the bibliography is concentrated on a literature that makes the case for why we need these kind of things.
DR. STARFIELD: Yes.
DR. GREENBERG: So I think you have to identify appropriate people. I think we are expecting the expenditure of funds, but we are really identifying the people, the scope of work and all that, that has to come from the experts.
DR. DEERING: I think we are all sort of frustrated, because staff -- we know some of us on staff who would dearly love to be liberated to do this, and feel that we could probably give you a good product, but there is just no time for it.
DR. STARFIELD: Like Dan and my discussion about the vision.
DR. DEERING: Exactly. So we'll definitely talk with you about that. Based on your experience with some people that you have in the past, is there anybody you would want to recommend?
DR. GREENBERG: On the research side, I really don't know. I think Susan Connought is an excellent writer, but everybody is thinking about using her for various things, and she has got some assignments in addition to her regular assignments with the committee. She has some assignments related to the 50th anniversary and history in the symposium.
She was working on this initially, but she certainly wouldn't be the person to do the research. She doesn't feel that was her area.
DR. DEERING: So we could approach her, and it would be her call as to whether or not she has got the time? Or you are suggesting that we don't even bother?
(Simultaneous discussion.)
DR. STARFIELD: We were also talking about having her do some of the writing related to the 21st century vision.
DR. STEIDEL: Marjorie is at the center of this. We just need to be sure we're not cannibalizing each other or ourselves.
DR. GREENBERG: Right. But of course, there are other people. I don't know whether --
(Simultaneous discussion.)
DR. LUMPKIN: My only concern is that there is U.S. specific literature that needs to be researched, particularly on the person side.
DR. STARFIELD: He runs an abstracting service, has for many years. He searches the world literature.
DR. LUMPKIN: But I'm saying that the literature that we may be looking for to make the case in the person specific would not be the scientific literature. It would be more of the popular literature, because we want to make the case that people are increasingly becoming more concerned, there are websites developing, that kind of stuff. So I think we need some --
DR. DEERING: Would you like us to make some suggestions within two weeks by email?
(Simultaneous discussion.)
DR. LUMPKIN: It may be possible instead of one huge tiny contract, we could look at two smaller researcher stuff, one to look make the case for the community and the caregiver and the other one to make the case for the public.
DR. GREENBERG: And the third one to be the writer.
DR. LUMPKIN: Because the kind of literature that we are going to be looking for are different.
DR. STEIDEL: I know a writer researcher in Chicago who might be good, a guy named William Cheek. He writes for CAP Today, and his wife is an immunologist in Chicago, and he has done a lot of semi-general public type articles and does a lot of his own research and stuff. I don't know his availability. I knew him when he was in Atlanta. I have worked with him on articles for CAP Today.
DR. LUMPKIN: Then we could start this person off with listening to the tape of this meeting. I think it would give them a lot of flavor of input.
MR. BLAIR: So this isn't on the Internet?
DR. GREENBERG: It is being transcribed. You can decide if you want minutes. You may not want minutes so much as a brief summary or something as to what you are planning to do. But the transcript will be there to use.
DR. LUMPKIN: Why don't we take a lunch break?
(The meeting recessed for lunch at 11:35 a.m., to reconvene at 12:37 p.m.)
A F T E R N O O N S E S S I O N (12:37 p.m.)
DR. LUMPKIN: Let's go into the papers. Shall we start off with the one that we have probably looked at the least, which is the personal dimension? Let's get up front and personal.
What I thought we would do is two things. Anything that comes up that we think we want to enhance in these documents -- my inclination is probably not to go through too many more iterations, if any. I think we can just put the notes in the margins, because these documents are now going to be crafted into the document that we are going to be preparing for February. So I think we have probably taken them fairly well.
MR. BLAIR: So what is our status now about January 28?
DR. LUMPKIN: We are going to get to that when Mary Jo gets back, we're going to talk about that. Comments?
DR. FRIEDMAN: Yes, an overall comment. I think that the caregiver and the community health dimension were reproduced at a later stage in the process than the personal health view. I think it would be -- assuming that we want more rather than less parallel formats, I think it would be helpful for somebody to go through the personal health view with the other two in front of them and add a couple of sections to make it more parallel, change a few things around, et cetera.
DR. LUMPKIN: Okay, make it more consistent with the other dimensions.
DR. FRIEDMAN: Both in terms of sections and wording, et cetera.
DR. STARFIELD: It would be useful along the same lines to put in some thinking about the relationship of the personal health view with the community health view, as we talked this morning.
DR. STEIDEL: I think there should be an explicit mention of quality in all the dimensions.
MR. BLAIR: Quality being quality of care?
DR. STEIDEL: I think in a way we should address what the IOM report was getting at in the dimensions, that the national health information infrastructure can enhance our monitoring of the quality that they were talking about in the IOM report, even though they made a confusing report. But we can sense what they were talking about.
DR. FRIEDMAN: Should we also think more broadly than that, with the personal health view in the community? Personal health dimension in the community health dimension?
DR. LUMPKIN: I think there is a dimension of quality in all of them. One of these dimensions is that what could populate the personal health view is some access to quality measurements of their local providers, facilities or clinicians. That would be the piece that I think would be of concern.
We have already mentioned in there their access to therapeutic recommendations and health information. So I think that would be how the quality piece would fit into this one.
DR. ZUBELDIA: What is that? Is that part of the caregiver dimension?
DR. LUMPKIN: I would think we would put that in as part of the personal health view or personal health dimension, because the dimension is how they reach out to all the information in some sort of organized way. So the data would be taken from the caregiver dimension and then would be presented in a meaningful way in the personal health dimension.
DR. STEIDEL: I made a note of this one bullet here, convenient access to high quality and trustworthy health and wellness education resources, one of which can be the quality of the physician. But I made a note there, in the personal view should we focus on the individual needs in these for those?
DR. STARFIELD: How did you word it? Convenient access to what?
DR. STEIDEL: There is a bullet already there, convenient access to high quality. I just made a marginal note, do we really mean there we should focus on the individual needs, the person who has that health dimension? What education resources are we exposed to that are the ones that you need? Which goes along with your physician.
DR. LUMPKIN: One of the things that we have bee struggling with in the foundation for accountability is how to present health information. If you can think about HEDIS and caps and all these other measurement systems, once you have the information, you can now put weights on it. What the community health view would say is, if you are selecting health plans, and you are concerned about overall quality, then you would get generalized weights. But if what you are really concerned about is that you have an asthmatic kid, then your picture of looking at potential health plans may look totally different, because what you really care about is how good are they at managing asthma amongst kids.
So the personal health dimension would allow you to modify those approaches, and they would present the data in a way that is meaningful to the individual, the quality data.
DR. STARFIELD: You said something in there though that interests me. The community health view would provide a database on quality of health care plans, or at least, I interpreted you to say that. Do you think of it that way? Oh, that's good.
DR. LUMPKIN: Although the community health view would have in a regulatory role a measure of quality.
DR. STARFIELD: In the community, not for a health plan. A health plan is more for the caregiver.
DR. LUMPKIN: No, I think the community health dimension would be where the part of our agency that regulates health care facilities would use quality information to determine if we have got an outlier here, or if something has gone wrong.
DR. STARFIELD: I don't have any problem with that.
DR. LUMPKIN: But it would be for public policy and other aspects, how is the health in a community.
DR. STARFIELD: But I can't see HEDIS, for example, or the NCQA putting information into a community health dimension, can you?
DR. ZUBELDIA: That is what he is talking about.
DR. STARFIELD: No, he is talking about a community oriented agency, like a public health agency, which is not what NCQA is.
DR. LUMPKIN: From a provider's point of view, the data elements that they may want to make available for an individual to look at in their personal health dimension, may include whether or not they are certified in NCQA. They may give the same information that they give to the NCQA, maybe passed to the community health dimension for regulatory purposes, or to add with other sources of quality data to give measurements of quality of the health care in the general community.
DR. STARFIELD: In the general community, not necessarily in the health plan.
DR. DEERING: Could I be clear on one thing? When we talk about the community health view, we are not necessarily talking only about the local; community applies to the national community as well. So that is where I wanted to be sure I was understanding correctly, because quality of care measures that are gathered nationally, but they have local, zip code or whatever it is, regional dimensions. Why wouldn't those be in the community health view?
DR. STARFIELD: They would. I am just reacting to the notion that managed care organizations could put information on their own performance into a community health dimension.
DR. DEERING: Self denominating.
DR. LUMPKIN: I think the underlying principle of all of these dimensions is that this stuff is all in the eye of the beholder. So it depends on why you are using the community health dimension. If you are using it in a regulatory sense, it may be plan specific. If you are using it to gauge the health of the community, you may be more aggregate.
DR. DEERING: What about the individual shopping around for health care?
DR. LUMPKIN: That is in the personal health dimension. There it would be plan specific, and could be even disease specific.
DR. DEERING: Plan specific, but all plans.
DR. LUMPKIN: All plans that are important to that individual.
MR. BLAIR: But I was not getting the impression that an individual would not have access to NCQA's website where at some point it may choose to publicize the information which may help an individual or an employer choose between health plans, facilities or providers. I think that right now is in the private sector, and I am assuming it would remain in the private sector?
DR. LUMPKIN: And I think that each of the dimensions would use source data from numerous public and private sources, and then would present it in a way that is meaningful to the viewer.
MR. BLAIR: When we talk about a national health information infrastructure, we are talking about an infrastructure that will support and facilitate all these things, but there are going to be a lot of different organizations that either will access information or provide information, using the infrastructure, and an individual using a personal health record might have a portal or a window into many different sources of health care information from the private sector.
DR. LUMPKIN: And the boundary between community and provider will blur in many instances, particularly when government becomes a provider of care. So as we have discussed, this is not mutually exclusive. The boundaries between these different dimensions are very fuzzy.
Any other comments on the personal view?
DR. DEERING: The only thing I wanted to pick up on that convenient access, what I thought I heard someone getting at was personalized information, not just a library of information.
DR. LUMPKIN: Right.
DR. STEIDEL: I had a comment under secondary users. This is more of a presentation question than anything else. While these are very valid secondary users, I am wondering about how this will play, if we put in the personal view that the public health is going to be accessing the personal view. What public health needs a lot from the personal view can come from the caregiver view.
DR. STARFIELD: Like access to medical records.
DR. STEIDEL: Right. I am just curious from a presentation point of view, not from a need point of view.
DR. LUMPKIN: I think we need to be careful about the terminology. They may be accessing personal information, which will not necessarily come from the caregiver, such as the behavioral risk factor survey, HANES, this kind of thing is, where data is collected.
As I mentioned, this section would benefit from being more consistent with the other sections. If we had a section on data collection, we could clarify that particular aspect of it, saying that data may be derived from individuals, either directly through surveys such as --
DR. STARFIELD: What about that? Could it not be that an individual instead of being surveyed by a surveyor, could in fact be asked to provide information from their personal health record in lieu of being surveyed? It is voluntary obviously, just like a survey.
DR. LUMPKIN: I personally don't have a problem. I would have to think how the statisticians would think about that. Are you getting a skewed view because the people who are willing to provide it, provide it?
DR. STARFIELD: You have that with surveys, too.
DR. LUMPKIN: But obviously, that would be an iteration down the road. You wouldn't need to do BRFS if everybody was on the road, and once a year their smoking status was accessible to be summarized.
DR. DEERING: Someone was pointing out that by the end of the decade, we will likely not vote in polling places; we will vote at home or one of the various information devices that is coming along. I am wondering whether surveys will go that way also, that you have the opportunity in your home, just as you do now, to take it by electronic means, and by giving your acquiescence and knowing what the ground rules are, you have agreed to whatever the officials uses are, as stated. That is certainly much longer term, but --
DR. STARFIELD: So maybe it is worth putting in some kind of a -- in theory, this isn't any different than surveys.
DR. ZUBELDIA: It is happening today in other trends. For example, a lot of the professional magazines that I get for free on security and Internet and all that, to renew the subscription, you have to fill out a survey, and you do that on the Internet.
DR. SCANLON: The only thing to worry about is the central factor of statistical inference is this idea of representation, and volunteer quota responses have to underline research as well. If you have that universe or you can systematically, probabilistically select samples, that is one thing, but a free form -- we're still not at that point yet. So I think you just have to describe what you mean in terms of scientifically based surveys.
DR. DEERING: I was thinking of like the Internet service provider, your ISP. Whoever is doing the survey -- this is really farfetched and would take some new mind sets, but would go to the ISP and say, we want your people who live in these zip codes, who have these income levels, and we want an array of this, so that we can push out our request for a survey through them.
DR. STARFIELD: We were talking this morning about how, when this comes out a year from now, we'll maybe have data --
(Simultaneous discussion.)
DR. DEERING: I did want to pick up on a wording issue under primary users. We have legal guardians. What the lay public would have put there is the word caregiver. I think we discussed that at one of our earlier meetings.
DR. STARFIELD: Because caregiver is a physician.
DR. DEERING: Not for the lay public. HCFA has a huge initiative reaching out to caregivers. There was even an academic article passed in the last couple of weeks about mortality among caregivers.
DR. STARFIELD: I know, mothers and fathers are caregivers.
DR. DEERING: Yes, but it is actually the way the public would interpret it, so I just want to put that on the table, because people would expect to see the word caregiver not as a physician among the primary users here, so it puts us in conflict with ourselves.
(Simultaneous discussion.)
DR. ZUBELDIA: Can we narrow it down to maybe family members that are caregivers?
DR. DEERING: No, I think it is significant others, it is friends. It is anybody who is literally providing health support. It is such a broad movement these days, and people are really focusing more attention on it.
DR. STARFIELD: So are you thinking to replace the term legal guardian by something, maybe not necessarily caregivers, but something more?
DR. STEIDEL: There is a distinction between legal guardian and a caregiver. A caregiver could be anybody; they may not have any legal connotation, and legal guardian has a legal connotation. Do you want to expand it to the people who have an informal caregiving right, not a legal --
DR. DEERING: So it should be a separate bullet.
DR. STEIDEL: If you want to include something like that. I think you are including it with the health care providers. Not for treatment.
DR. STARFIELD: I think you can just put it under individuals, individuals and their designated responsible something or other. I don't know what the word is. There is a word; I'm just not thinking of it. Designated proxies.
DR. STEIDEL: That is the way I read it when I was looking at it. I wasn't looking at it as a significant other, which may not necessarily be a legal relationship.
DR. FRIEDMAN: One way of dealing with it, Mary Jo, rather than labelling it caregiver, I do think it would be confusing, maybe just having a sentence or two, something like people -- family members and others who provide ongoing care.
DR. STEIDEL: Add the word authorized.
DR. DEERING: No, it's not that formal.
DR. STEIDEL: But without some formality to it, --
DR. ZUBELDIA: Other health care support personnel, something like that.
DR. FRIEDMAN: What I was thinking when I say this was, taking care of another.
DR. DEERING: You're quite right, it is mostly the family. It is just not entirely the family. It is definitely not medical community.
DR. BRANDES: But you would not have access to a family member's medical record unless with some authorization.
DR. DEERING: Steve's point is right in that sense. You are absolutely right in raising that, the people authorized by them.
DR. STEIDEL: Without some type of authorization, I think we're going to run into some type of problem.
DR. DEERING: We can just leave it, individuals and persons authorized by them, or other people authorized by them, and just leave it that broad.
DR. WILLIMSS: Would social security be used, authorized representatives. It is not necessarily a judicially authorized, but the person who gave the permission at that point was competent because of the key aspect of the competency.
DR. STEIDEL: Mary Jo, the other comment that was made before you came back was, since this was written before the caregiving dimension and the community dimension, that it would make sense to go through it, were these in front of you, or somebody, and try to make that more parallel.
DR. DEERING: Can I just make sure I've heard closure under that secondary users? I heard on one hand, we got immediately into the issue of making sure that we included data collection and where the data would come from. I heard the phrase repeatedly, it is an issue of presentation, and I think it is, too, to put out front and center that you are going to have research and other uses of it. But again, that is an issue that we will probably have to grapple with earlier rather than later. I guess I didn't hear a consensus around the room.
DR. ZUBELDIA: The first bullet on secondary uses, there seems to be a conflict between the identifier of aggregated data and strict assurances of privacy and confidentiality and medical ethics. If the data truly is de-identified, why are we putting all that emphasis on the privacy of it?
DR. STEIDEL: The only way it could be de-identified is if you had access to go in and get it in the first place, and then pass it on in a de-identified fashion. So what we are saying is that health systems researchers in public health can go in and access a personal view. They may not get the personal information on it, but they might be allowed under certain circumstances to access your personal dimension.
DR. ZUBELDIA: Knowing who you are, then it is not de-identified.
DR. STARFIELD: And it would subsequently be de-identified.
DR. DEERING: But then who is it that gets to go in pre de-identification?
DR. STARFIELD: Maybe instead of secondary users, we could say secondary uses and describe the kind of information.
DR. STEIDEL: I like that approach.
DR. FRIEDMAN: I think this also gets to the point of whether or not we are really talking about public health professionals and health service researchers having access to personal health dimension data, or we are talking about having that data moved over to the community health view or the caregiver view, and access via that.
I would be more comfortable actually not putting in something about public health professionals and health services researchers directly accessing the personal health dimension data.
DR. DEERING: That was our conversation earlier. I think you must have raised that earlier. That is a very good point.
DR. STEIDEL: So how are you changing the phrasing?
DR. DEERING: Striking it out. There may be another area where we can make that point in a way that would be like a handoff community and the caregiver dimension.
DR. STEIDEL: The secondary part of the marginal note I made here was that some of this information we may need to transfer in the way we are talking about, when a person moves. But if we are talking about a type of push-pull technology, a handshake technology, that type of handshake would imply that the updates of the various other dimensions would occur when a person moved.
DR. STARFIELD: But the personal health dimension doesn't change.
DR. STEIDEL: No, the personal health dimension doesn't, but you can see for public health purposes, if you had a person with an infectious disease moving from one community to another community, you might want to advise the other community.
DR. STARFIELD: One of the things that the other two dimensions has is the notion of core data.
DR. DEERING: So that would be something to look at, yes.
DR. STARFIELD: On this point here, I'm going to make it for the other two dimensions also, this next to the last bullet. Means for storage and retrieval in ongoing health care information, et cetera, such as medication instructions, with a key to any automatic drug-drug interactions.
I think what is clearly surfacing from the IOM report and from other studies is that we don't know a lot of these drug-drug interactions. It is not something we can put information up there and say, if you take these two drugs you're going to have an interaction, because we don't know a lot about what goes into that.
So for all of them, we have to build in a capacity to detect potential drug interactions as well as prevent them because of something we already know. I'll make the point also for the other two dimensions.
DR. BRANDES: Wouldn't that be a decision support function where the system would have the functional capability to look over not only the medications that the patient is taking, but the environment, the allergies, medical history, even maybe lab tests, and they can give them an alert-warning? In this case, the alert-warning goes to the patient. Is that what you're saying?
DR. STARFIELD: Yes, but I'm saying more than that, because sometimes we don't know the constellation of individual factors that are going to predispose to drug interaction.
DR. STEIDEL: I made a marginal note like that, saying one component of this should be appropriateness checking, the warning system. If you are updating characteristics, and we are talking in the push-pull environment, then if new reasons for inappropriate drug use were found, then individuals would be notified of that.
DR. STARFIELD: But that is already covered in here.
(Simultaneous discussion.)
DR. LUMPKIN: And the other piece is how this relates. The issue was, we had someone come in from Sweden to Hamburger U. or wherever they had a conference, and they developed measles, which was identified and referred to us appropriately, but the person had also gone to a hockey game. Really, you are just concerned about people who may be immunocompromised. Immunocompromise would pop up in the personal health view if you are immunocompromised, if there might be an alert that you would want to send.
(Simultaneous discussion.)
DR. LUMPKIN: So, community health dimension now?
DR. STEIDEL: I had one comment I wanted to toss out. The only other one in there is the issue I tossed out before, the concept of a trusted authority, would be one of the places where the data would be kept, either a personal smart card, a personal's PC, in their files or a trusted authority.
DR. STARFIELD: So where would that go?
DR. STEIDEL: When we talk about -- when we add to this document the five dimensions of data collection, data communication, data storage -- what's the other ones, Jeff? Information capture, information communication, information storage, information processing and information presentation. So the information storage piece, we talk about the fact that there needs to be some way to regulate these trusted authorities who had the storage depot, for people who choose to pick that as their --
DR. STARFIELD: We need to add a section. is that something that each of the dimensions is going to do separately?
DR. STEIDEL: That was an item for uniformity. We thought those five areas within function would be ones that would be good to define within each one of the dimensions.
DR. STARFIELD: What I mean is, should each of the dimensions responsible people do that separately, or should someone do it for all three of them?
DR. STEIDEL: Yes.
DR. ZUBELDIA: I don't really understand how you can do that, because if you have storage offline of your personal health dimension, the master data is also viewable through the community dimension, or is it not? Is it viewable through the caregiver dimension, or is it not? If you have an autoband and if you have a smart card, you can't see it.
DR. STEIDEL: I think that is why we went away from the term view into dimension. Aspects of personal health information would populate what you would see in the community health dimension. For instance, if you had measles, that would show up in the community health dimension and the surveillance component of that. But the fact that you are on Welbuterin for your dementia would not be seen by anybody -- I mean, for your depression, unless you chose to make that available. So there are different types of information.
But where the data storage comes in is that data for a health care provider, for a caregiver, would be tended to either by stored by the caregiver or a trusted authority. If they are in a hospital, an integrated health care delivery system, it may be stored by whoever is operating that in a centralized system, but kept separate, virtually separate.
In the community health dimension, it may be in a registry, it may be in a surveillance system. So when we talk about shortages, there are some different aspects of how the data is stored. But what we really want to give the impression for people to understand is that it is not going to be stored any differently under the NHII than it would be now, which is in a distributed system, where communication is facilitated.
DR. ZUBELDIA: With multiple copies of the data.
DR. STEIDEL: In some cases, yes, where appropriate.
MR. BLAIR: John, I think before Kepa joined the committee, you had articulated the addition of a Venn diagram, where these three dimensions partially overlapped. I just thought I would bring it up again. We still haven't revisited that, to see if we still feel like that is a good representation.
So I thought, Kepa, that would be one useful way of thinking about the three dimensions, where you had partial overlap in a Venn diagram. Does that still apply, John, do you think?
DR. LUMPKIN: It does. I am now holding up the Venn diagram.
MR. BLAIR: Oh, you've got a picture.
DR. LUMPKIN: I just drew one. Depending upon the dynamic of the individual's interactions with those systems, the degree of overlap would change. So for someone who would maybe have a chronic illness during the time of treatment, those two would attend the class. Once they are over it, there may be other separate things.
So I think that is different than saying where the data is stored, because we want to emphasize, it is going to be stored where it is stored now.
DR. ZUBELDIA: So the degree of replication would vary along time.
DR. LUMPKIN: Right.
DR. ZUBELDIA: It could be at a point where the personal data is only stored on your smart card, because there is no more replication after the episode of care.
DR. LUMPKIN: And you don't want that replication. But if it is a measles case, it would be replicated in all three dimensions.
DR. STEIDEL: We have now described these dimensions as being dynamic. They are interacting with each other, more than just at the episode of care, when you are talking about updating people. This was found to be a Superfund site, you lived there, we are going to update the personal records of all the people who lived there. Do you think we should say something that, because of that dynamic nature, there are some limitations to locally stored data, like on smart cards or on individual PCs? And data like that would be updated?
DR. ZUBELDIA: You cannot update the smart cards of other people. But you can send them a message of some sort saying there is an event that needs to be updated in your smart card.
DR. STEIDEL: You don't know that it needs to be updated in their smart card.
DR. LUMPKIN: But here is the limitation. I think we don't want to be tied into a technology. One of the partial implementations may be by using smart cards, but the technology that would fully implement this is not necessarily available today. It may be a smart card that is equivalent of a Palm-7, it's got a little built-in antenna.
DR. STEIDEL: I just said we should mention what the limitations are for the current technologies.
MR. BLAIR: I don't even know if we want to go into current technologies. We may not want to describe any storage system.
DR. LUMPKIN: Any technology at all, yes. Just have this be in terms of information.
DR. ZUBELDIA: Something like a personal secure storage.
DR. LUMPKIN: We could say that, yes, because I think we don't want to be so far out that people don't believe it is doable. I think that we could say that technology such as maybe partial implementations of this vision.
MR. BLAIR: That is a good way to put it.
DR. LUMPKIN: Have we beat that personal dimension?
DR. DEERING: A lot of these comments are really cross cutting. They may even go into an introduction or something, it is hard to know.
DR. LUMPKIN: So community health dimension. Probably we will find it -- because Jeff has made all the corrections that we have been talking about today in the 11/9 version that many of us haven't had a chance to read yet, we know they are all in there.
DR. DEERING: Is there any kind of a hierarchy implied that once we correctly renamed a personal health dimension, that it becomes a Ph.D, as opposed to a coronary heart disease?
DR. LUMPKIN: Well, it is a graduated degree.
(Simultaneous discussion.)
DR. LUMPKIN: Community health dimension.
DR. STEIDEL: One of my comments in this was, the community health dimension, what are its functions, the very, very last bullet, studies to improve population health by approved researchers. The word approved stood out like a red flag. I think we should say what we mean by it.
DR. STARFIELD: Do we need the word?
DR. STEIDEL: I don't think we need the word. But it cries for the definition of who does the approval.
MR. BLAIR: But my thought was, we have a lot of instances in our society right now where people are abusing information systems and marketing information which they sometimes call research. I guess I considered it to be a safeguard that there was some indication that this would not just be anybody that calls himself a researcher.
DR. LUMPKIN: How about if we just took out the whole clause and just said, studies to improve the population's health?
DR. STEIDEL: I think that would solve it.
DR. DEERING: In reading the sentence that introduces all of the bullets, the improved access of public health professionals to accurate and timely information will support studies to improve, is that okay?
DR. STEIDEL: That's fine.
DR. BRANDES: Can I bring up a point? The word tool for rewriting the personal health dimension is not used at all in the overview, and it is used in the overview of the other dimensions. I think that is an important word that has different meanings to different people, whether these are tools, can be thought of as a tool.
DR. LUMPKIN: I think that is a good point, because that was part of the reason why we had so much difficulty struggling with what we were going to call these things. We probably ought to not use the word tool.
DR. BRANDES: I view it like the national highway system. That is an infrastructure that already exists. If it is our job to improve the highway system in the country, we wouldn't say the highway system is a tool that we're going to use for this or that. We say it is there, it is something that is already there, and that we're going to improve. But it is not a thing that we are using as a tool to do something else with.
DR. LUMPKIN: How about, the community health dimension enables the management of population health related information?
DR. STARFIELD: Or just manages population.
DR. LUMPKIN: Again, in the caregiver one, the caregiver dimension will help the health care provider better manage.
DR. STEIDEL: A couple of other points. In the very last set, where will the community health dimension be utilized and be sectored, do we think the people who got a new acronym, ARC, should be listed? We have federal agencies such as the Centers for Disease Control and Prevention and the health services, health resources systems administration. Should we give our new friends at ARC a listing? AHCPR under their new name?
(Simultaneous discussion.)
DR. DEERING: Or should we mention any specific agencies, because there is VA, there is --
DR. LUMPKIN: Just say federal agencies, yes. From the standpoint of the sensitivity of certain segments of the population that are fearful, I think it is helpful if you wind up giving examples where you say ARC and CDC. It indicates the intent.
DR. STEIDEL: How about federal health agencies?
DR. LUMPKIN: There you go.
DR. STEIDEL: And then in the last section, privacy, security and confidentiality concerns, the first two bullets, they need better definition. I have no idea what they are.
DR. FRIEDMAN: The access dimension refers back to something that was discussed a couple of paragraphs above that.
DR. LUMPKIN: I think that will be moving from the outline to the prose version. We probably need to flesh that out.
The caregiver. I just thought somewhere in there, we wanted to include in the overview that it is also populated by input from the community health dimension.
DR. STEIDEL: Could you repeat that?
DR. LUMPKIN: Yes. In the first page, first paragraph, we talk about, it is given access from the personal dimension, personal health dimension; it should also mention the community health dimension. That is just the connection.
DR. STEIDEL: Also, in the first paragraph, Jeff, when you say encounter oriented, I think you need to define what you mean by an encounter.
MR. BLAIR: Oh, no.
DR. STEIDEL: The implication is, is an encounter a health care episode, which could extend over years, or is it just my going into the physician for this one 15-minute visit?
MR. BLAIR: Barbara, could you help me?
DR. STARFIELD: I actually said the same thing, and then I said I want to think about that, and leave it the way it is.
MR. BLAIR: The reason that I reached the way I did is not that I don't acknowledge that there is ambiguity there. It is that -- as a matter of fact, in the IOM meeting back in 1991, the definition of episode, encounter and visit, we never got to consensus on those. So I don't have a strong feeling as to which word is used, but I don't know that I am able to come up with an explicit definition that everybody would accept for any of those definitions. So we stuck it in here.
Barbara, I think I had episode and you changed it to encounter or vice versa.
DR. STARFIELD: But they both have the same problem.
MR. BLAIR: Yes, they both have the same problem. I don't know how to solve it.
DR. DEERING: Could it be something like, although the information is usually derived from a medical visit?
(Simultaneous discussion.)
DR. LUMPKIN: I think we are running into the same problem that you do when you have a coding system that is used for reimbursement. We have a terminology that is used for reimbursement. It tries to sit in two different camps and mean the same to two different folks using it two different ways. My guess is, if we just use encounter, even though there is ambiguity, it conveys what we are trying to get across. The specificity of implementing the NHII, someone will probably have to define that term.
But we should remember that there is a specific X-12 transaction standard for an encounter.
DR. STARFIELD: But about care oriented?
DR. STEIDEL: Health care oriented.
DR. STARFIELD: Yes, health care oriented, which captures the specific and the extended over time.
DR. LUMPKIN: But that is actually not what we are talking about. I don't want to use episode, but it is episodic. It is digital, it is not analog, meaning that there are finite boluses of information. It is not a continuous measurement. It is Hieroclides stepping into the river.
DR. DEERING: So like related to specific health care?
DR. STEIDEL: I think we can pick up on what you just said and defer discussion until we work in the definition of terms section, and leave it as encounter here. It depends on how we define encounter in the definition of terms.
MR. BLAIR: I'll certainly jump on that suggestion, because that takes it off my back.
DR. LUMPKIN: I think what we are getting to is that the information is usually kept in discrete packets.
DR. STARFIELD: How about discrete units of care?
DR. LUMPKIN: But it is not the units of care that are discrete. That is why we are running into a difficulty. We are describing information and we are trying to define a continuity of care which really occurs in generating data in discrete, temporally isolated packets.
DR. DEERING: If you go down to the third page where it says what types of data it will contain, you are very specific that it is care related data.
DR. LUMPKIN: Care related, okay. The care dimension centers on the individual as the unit of substantive interest, although the information is typically care related, and designed to insure the confidentiality of each individual's health care information.
DR. ZUBELDIA: If you want to express the concept of discrete units, maybe we can say it is typically captured during the care or captured in care.
DR. LUMPKIN: I think we're going to boot on the discrete -- we're going to be in discrete.
DR. BRANDES: The word although then I'm not sure fits there, because although would indicate that there is some sort of discordance between care related and individual.
DR. LUMPKIN: Centers on the individual as the unit of substantive interest and is typically --
DR. DEERING: Just delete the next three words, substantive interest, comma, is typically -- the CD centers on the individual as the unit of substantive interest, comma, is typically care related, comma, and is designed to insure the confidentiality.
DR. LUMPKIN: I like that.
DR. STARFIELD: I have two related comments. One of them is in the second major bullet on the first page, improve efficiency to control health care costs. Then where it says reduce adverse drug events through the availability of concurrent alerts. I would add, and facilitate recognition of these and other adverse medical events when they occur.
DR. STEIDEL: And where is that item located?
DR. STARFIELD: It is on the first page, the second bullet in the second major bullet.
DR. STEIDEL: Jeff, in the next major bullet, protecting the confidentiality of health care information, I would add a section on logging and audit trails explicitly.
DR. STARFIELD: That is security, right.
DR. STEIDEL: Right. It was explicitly mentioned in the personal health dimension.
MR. BLAIR: Just identify the location first and then the phrase.
DR. STEIDEL: I don't have a specific phrase, but protecting the confidentiality of health care information, add a section on logging and auditing. Page one, towards the bottom.
MR. BLAIR: I think I had that phrased in different places. That is why I was trying to identify which one you were referring to.
DR. STARFIELD: I have something on, a CD will benefit the users of the personal dimension, which is on the top third of the second page. The start of the section is, the CD will benefit the users of the personal dimension by, and there is one bullet, providing more consistent and complete documentation of individual encounters of care and medical events that can be summarized for inclusion or reference. So we are adding, and medical events.
This is really a question on the information presentation. It says, the caregiver dimension is selected by the caregiver and organized by the information system in a manner that is easy to use and efficient for the caregiver.
The problem I am having is with, selected by the caregiver. We have already said in here that there are certain core elements. Later on we talk about the core elements. It is the retrieval of the information that is selected, not the information itself.
DR. ZUBELDIA: The caregiver may choose to not see some of those elements.
(Simultaneous discussion.)
DR. STARFIELD: It is the difference between whatever information the caregiver puts in and what the caregiver uses. I read it one way, and you probably meant it the other way.
DR. LUMPKIN: I think you're right, whether the caregiver is entering information or accessing information.
DR. STEIDEL: I have a recommended change. What we are saying, under information presentation, is that the caregiver organizes the information system in a manner that makes it easy for them to use -- or in a manner that is easy to use and efficient for the caregiver.
DR. LUMPKIN: I'm sorry, are you on the same point?
DR. STEIDEL: Yes. It is page three, under the title of information presentation. It would read, the caregiver organizes the presentation of the information in a manner that is easy to use and efficient for the caregiver.
DR. STARFIELD: That's fine. It is more how the caregiver retrieves the information than what they put in.
DR. LUMPKIN: It is also related to the fact we tend to keep on falling back into calling the caregiver dimension a tool. A tool is selected, but really, it enables the person to get the information the way it is discussed for them to use it.
DR. STARFIELD: I think it is the retrieval rather than the presentation, because it is presentation to whom. It is not the presentation in the record, it is the presentation of the use of the information, isn't it?
DR. LUMPKIN: I think that is the reason why it is differentiated from storage.
DR. STARFIELD: It says presentation.
DR. DEERING: I wanted to just clarify, in your revision, you also deleted the word dimension. So it is not the caregiver dimension organizes the information, it is the caregiver organizes the information.
DR. LUMPKIN: Yes. If I can go back, back on page two, we describe that the caregiver dimension will benefit the users of the community health view by; I think that is inconsistent with our motto. I don't think it fits, because we're going to have this with the whole description of what the personal health view is, and the community health view.
MR. BLAIR: This was trying to be one of the links, which was trying to indicate that in addition to the caregiver dimension being a value to a caregiver, it also would have value to folks using the community health dimension, and it would also have information that could be a value to personal ones. The attempt there -- we can change this, but this was just my thinking on it, was to try to indicate that if we had a robust caregiver dimension that was able to capture more complete information, more accurate information, then when that information is summarized and included in the personal view, it is more meaningful and relevant.
I don't know what I said there, but --
DR. LUMPKIN: I think what we want to say is that subject to the rules to protect privacy and confidentiality, information collected by the caregiver will also be used in the community health and the personal dimension.
DR. STARFIELD: I think we can take care of that by taking out will benefit the users, and say the CD will augment the community health view by --
DR. ZUBELDIA: But it is not the CD, it is the data share by the caregiver.
DR. STARFIELD: And the same thing for the next bullet.
MR. BLAIR: Can I capture those phrases, please?
DR. ZUBELDIA: The data shared by the caregiver will benefit the users of the community health view by -- and the data shared by the caregiver will benefit the users of the personal dimension by.
DR. FRIEDMAN: The data shared by the caregiver will augment the community health dimension, and the data shared by the caregiver will augment the personal dimension.
DR. STEIDEL: I have a philosophical question in this area. Improving the detailed data. Do we really want to do that?
MR. BLAIR: Put it in context, because I don't know where you are.
DR. STEIDEL: I'm being very picky. Actually, I do have a picky word on the next section on information source.
MR. BLAIR: Tell me where you are.
DR. STEIDEL: On information storage, on page three, the very last sentence. If the health care information is sent to other caregivers or health care institutions, comma, I would like to remove the word the. It is any health care information. If health care information is sent to caregivers or other health care institutions, comma, they are also responsible to protect the confidentiality of the data.
DR. STARFIELD: Can we say shared with?
DR. STEIDEL: Fine, it's shared with, if health care information is shared with. The next page in the bullet list, where we had what types of data will a caregiver dimension contain, you had asterisks by bullets that indicated they may come from the personal health dimension. I thought asterisk should be added; legal consents or permissions that may come from a personal health dimension, physical exam information may also come from the personal view.
DR. STARFIELD: How can a physical exam come from a personal view?
DR. STEIDEL: It could be a past physical exam.
DR. LUMPKIN: It comes to the caregiver through my personal health view source.
DR. STARFIELD: Even though it is some other caregiver record.
DR. STEIDEL: And patient amendments from the personal health dimension.
DR. LUMPKIN: If I could make the suggestion that we would just drop the asterisk, keep the parentheses and just say part or all of the information above.
DR. STEIDEL: Thank you.
MR. BLAIR: Please repeat that.
DR. LUMPKIN: What types of information that the caregiver will contain at the end, we just drop all the asterisks and just say part or all of the information above may be obtained from the personal dimension.
DR. STARFIELD: I also have an amendment to this, too. One of the bullets in the same section, which is types of data, says assessments. I would like to add assessments of patients' signs and symptoms. That is again consistent with the notion that it is a source of information.
MR. BLAIR: I think that may be a term of art, because physicians do diagnosis and nurses do assessments. So I think that is nurses' notes.
DR. STARFIELD: It doesn't matter. Assessment of patients' signs and symptoms can be --
DR. DEERING: Assessments standing alone is so naked.
DR. STARFIELD: On the progress notes, something
within that says functional status.
MR. BLAIR: Help me with that. I didn't know whether to list that as a sub-item or whether that is stand-alone. So what do you suggest?
DR. STARFIELD: I don't think we need progress notes, because progress notes are going to contain many of the things that we have already listed.
MR. BLAIR: Delete the line item that says progress notes and leave a separate line item that has functional status.
DR. STARFIELD: But I don't think we need the PT, OT and RT, because it is not only that. Also, in the beginning paragraph of that section, in what types of data. While containing a basic core of information, I want to add, and intended to facilitate the flow of information across the continuum of care for an individual, the content will vary by site of care.
DR. FRIEDMAN: I would suggest that we take what Barbara just said and turn it into two different sentences.
MR. BLAIR: Okay, so the suggestion is to take what Barbara just dictated and divide it into two sentences.
DR. STARFIELD: We have to be careful in doing that, because the reason I inserted that clause is to get away from the notion that the content will vary by site, because that means there is a disconnect. I want to get away from that disconnect. I want to say that the information is in fact continuous. And if it varies by site, it may not be comparable or compatible. That is why I wanted to keep it in the same sentence.
DR. ZUBELDIA: But it will vary by site. It will have a standard way of expressing it.
DR. LUMPKIN: That's true, because the care for your ankle will differ from the care for your wrist. Or site, do you mean where the cere is given?
DR. STARFIELD: I hope not.
DR. LUMPKIN: The classical story is -- this really happened -- we had a patient who was injured on the street and we were picking him up, ambulance call. They said, where was the patient injured, 95th and Western.
MR. BLAIR: Before you go on to this next one, help me with this. Which way do I go? Do I divide it into two sentences or leave it as one?
DR. DEERING: I have a question to that sentence, so maybe I could ask a question and it might or might not suggest to me, because it is something I'm not sure I understand. It does get to this clause, vary by site of care. The content of the CD will vary by site of care. If I hear you and I understand correctly, what you really mean is, there are multiple sites of care that are all embedded in the content. It is not that the content is varying by site of care.
(Simultaneous discussion.)
MR. BLAIR: You might have a mental health facility, an ambulatory facility, an acute care facility.
DR. DEERING: I understand that, so you'll have a variety of different sites.
MR. BLAIR: Yes, so they may specify that there are certain things that have to be included, like, you're not going to have a discharge summary necessarily in an ambulatory setting, but that may be a requirement within acute care.
DR. DEERING: But are we saying by definition that the acute care dimension is not any one site's record? It encompasses all of the accumulation of those.
MR. BLAIR: I think it is an aggregation of them all.
DR. LUMPKIN: Here is the problem. I think we are mixing the description of a record within this with the concept of this broad dimension.
DR. DEERING: Because the content of the CD broadly won't vary by site. It will have multiple content that includes different types of data from various sites.
DR. LUMPKIN: So we could actually say, while containing a basic core of information, individual records within the caregiver dimension will vary by site of care, nature and so on and so forth. Does everybody feel comfortable with that?
DR. DEERING: I hate to push on this, but you have as your last sentence in that introductory material there a generalized CD representing either ambulatory care or acute care, long term care or mental health sites of care may include. I am just wondering if that doesn't get at the point that you just tried to make in the first sentence. Then maybe we could just simplify the first sentence by something to the effect that, while containing the basic core of information, and intended to facilitate the flow of information across a continuum of care, the content of the CD will contain.
DR. LUMPKIN: We've got a problem with this paragraph. This really should be under information capture, because what we are saying is, what types of data will a caregiver dimension contain. You are really talking about information that is captured in this dimension.
MR. BLAIR: The thought was, when we had information capture and information processing --
DR. LUMPKIN: Then we say it is captured here if it comes from another dimension.
MR. BLAIR: The thought was that information capture was describing a function, not the content.
DR. LUMPKIN: How about this? Information pertinent to a caregiver facilitated by this dimension includes the following. Essentially what we are saying, information that is pertinent to a caregiver in providing care services includes, then we have those points. We would want to add up talking about the different sites and different locations and the information that is needed at each site is different, but I think what we are saying is, what is unique about this dimension is, it is providing information to the caregiver.
Now, what have we decided with respect to Barbara's comment about having that in one sentence? What has happened with that?
DR. STARFIELD: I have a suggestion for that. We go back to what is the caregiver dimension and what are its functions. We incorporate it in there, which is on the second page. A CD will provide timely around the clock accurate information interchange to enhance the cere of the patient and facilitate its flow across the continuum of care.
MR. BLAIR: I'm getting confused.
DR. LUMPKIN: If I understand this correctly, wipe the slate clean, we're back to the original document. The comment about the continuum of care goes on page two, under, what is the caregiver dimension. Then we take on page three the major heading, which says what type of data does the caregiver dimension contain and change that heading to caregivers for use of the dimension to access the following types of data. Then we use that same type of description that is there, it just needs to be tweaked to be consistent with that heading.
MR. BLAIR: Is that the sum total of all changes now?
DR. BRANDES: Do the other two dimensions also have to be changed?
DR. STARFIELD: Why?
DR. BRANDES: There is not a major heading?
DR. LUMPKIN: We have a new major heading.
DR. STARFIELD: No, we're not changing the heading.
DR. DEERING: I thought you just changed the heading.
MR. BLAIR: Instead of saying what information does the dimension contain, we just changed it to, what information is accessed. I think that we have a heading under community health, what kinds of information will the community health dimension contain. Then it says, the community health dimension will access information from conventional sources. So we can change that fairy consistently without major editing.
DR. LUMPKIN: There is a real benefit by making that change, because we avoid somebody conceptualizing that there is this database that --
MR. BLAIR: Right, that's what I was just thinking.
DR. DEERING: Just so we are clear, under community health dimension, it is going to say something like --
DR. LUMPKIN: Instead of contain, it is going to be accessed through.
(Simultaneous discussion.)
DR. LUMPKIN: Again, data is going to be where it is right now, and we are facilitating the people who need it having access to it. We really ought to somewhere capture that phrase. I don't think we did that. The point is, the data will continue to be available in the same locations and facilities where it is stored now.
MR. BLAIR: The issue is, the data will continue to be stored in the same locations that it is now. The issue is authorized access.
DR. DEERING: Could I then just summarize that that subhead for all three areas would now lead what types of data will be accessed through the blank dimension. Is that what we have?
DR. ZUBELDIA: I think provided has the implication that the data holder is going to --
(Simultaneous discussion.)
DR. ZUBELDIA: It is giving. I am providing you with my data because I want to provide you with my data, because you are coming to my system and you are accessing my data.
DR. DEERING: I never thought that it actually was the reverse. I thought that what we had been talking about, was accessing, people going to get it, as opposed to an active --
DR. ZUBELDIA: Yes, you are going to come and ask me for it, but you are only going to get what I give you. You are not going to automatically access everything that is in my system without me giving it to you.
DR. STEIDEL: And provide is good, because we have also made certain restrictions on what data a person can access. One of them could be, the individual may block the access, so we couldn't even say universally it is all available.
But now that we have talked about that, I would like to throw a monkeywrench into it. Under who are the people and organizations involved in the caregiver dimension, primary users -- we have on page five, secondary users, public health researchers. We don't have explicitly stated in here public health in the case of reportable events and items like that, that are required to be reported. I feel that this should be reported from the caregiver dimension.
DR. STARFIELD: You may recall that in the personal dimension, we changed secondary users to secondary uses.
(Simultaneous discussion.)
DR. STEIDEL: Somehow in this area, I think we should explicitly mention that public health could be receiving notifiable events.
DR. LUMPKIN: I am more inclined to delete -- under secondary uses, there are four lists, patients as requested, clinical researchers, public health researchers and payors. The payors have no other source, and clinical researchers also have no other source, although some of that may be under the community health dimension. The patient gets access to the data through the personal health dimension. So they are not really a secondary user. They are a primary user through the personal health dimension. And public health is a primary user through the community health dimension. So we have got the whole description of the fact that that gets populated from the caregiver dimension. I don't think we need to be redundant.
(Simultaneous discussion.)
MR. BLAIR: So what you are saying is that under secondary users, we should delete some of those?
DR. LUMPKIN: I think under secondary users -- my suggestion is that we just use users, not have secondary, not have primary lists, physicians, nurses, allied health professionals, home health care professionals, clinical researchers and public health researchers. Just combine the primary and secondary. I meant payors and not public health researchers.
MR. BLAIR: We could do that, and that does accomplish certain things. One of the things that was achieved by distinguishing between primary and secondary was that the primary users were the caregivers and the secondary users were not caregivers. I thought that that was helpful for a first reader to see the division.
DR. LUMPKIN: I would agree with you in outline form, but since we are going to be converting it to prose, we can perhaps indicate that we need to have a -- describe those who will be using it to give care, and then further saying other users would be. So we probably need to differentiate the two in the writing, the clinical researchers and the payors, because they are a different class of users.
MR. BLAIR: So you would rather have other instead of primary and secondary?
DR. ZUBELDIA: You could have caregiver users and non-caregiver users.
DR. LUMPKIN: Okay. Page four, who are the people and organizations involved in the caregiver dimension, under users we have two categories, one is caregiver users and the second one is non-caregiver users.
DR. DEERING: And we are not then changing the bullets under non-caregiver to --
MR. BLAIR: We are going to eliminate the patient and public health researchers. One thing is, under current laws that folks are trying to get through Congress now, it is saying that the patient has a right to see their record. I think that they are envisioning the caregiver record.
DR. LUMPKIN: Yes, but these two users have their own dimension.
MR. BLAIR: I don't think that that obviates the intent that as individuals we would have a right to see -- with a trusted authority or even with a home computer. The patient and the caregiver conceptual model will have what may be the closest thing to a complete medical record that exists in one location. So the underlying assumption of the personal health dimension is that the patient has access to all of their own personal health information.
DR. ZUBELDIA: I think that the patient has access to everything that the caregiver dimension has on that patient.
DR. DEERING: I think it is similar to the misunderstanding with the other one, which is the distinction between the given record and the dimension. The laws are providing for access to the individual record, which is incorporated into the personal dimension.
DR. LUMPKIN: Can I suggest maybe an out on this? We mention in the prose, we just put a little asterisk here, if we put an asterisk here and say that in the prose section there needs to be some discussion of the laws that give patient access to the record, which would then be available through the personal health dimension.
MR. BLAIR: But it still is not indicating that a person does have access to a caregiver record?
DR. LUMPKIN: We would just say that in that section.
(Simultaneous discussion.)
MR. BLAIR: So you said personal health record would populate the personal health dimension. Did you mean to say that the caregiver record would populate the --
DR. LUMPKIN: The person attached to the caregiver record would have access to that record that is attached to them, and it would populate the personal health dimension.
DR. ZUBELDIA: The caregiver dimension may contain multiple personal records from different people.
DR. LUMPKIN: It would?
DR. ZUBELDIA: Yes. The caregiver dimension would contain the entire population that the caregiver sees. So the patient has no right to see that.
DR. LUMPKIN: Just their own.
DR. ZUBELDIA: Yes, they can see their own record, but it is part of the caregiver dimension.
MR. BLAIR: I see the viewpoint that you have, and now I understand why you were saying it the way you did.
DR. LUMPKIN: Anything else under caregiver?
DR. BRANDES: Can I make one general point? I attended a conference by the Medical Records Institute this summer. One of the points there was that there was a lot of technology available right now that is only waiting for an infrastructure to enable it. What we are talking here is long term, with no discussion necessarily of short term, what can be done right now. But the industry has already identified it.
DR. LUMPKIN: I think that belongs in the introduction, where we would say certain pieces of this --
DR. BRANDES: In the introduction we should include the concept?
DR. LUMPKIN: Not of this particular document, introduction of the whole NHII. We would talk about the fact that many of the -- much of the technology that would enable the NHII currently exists in isolated forms, and just needs the infrastructure to make it happen, basically.
Agenda Item: January Partnerships Conference
Let's take it from there to go to the January conference and spend a few minutes on that. Mary Jo has made it a point to say that despite the fact most people who reviewed our abstract didn't like it, we did make the final cut, barely.
DR. DEERING: Would you please paraphrase that better?
DR. LUMPKIN: Okay, we got the highest ranking of any abstract for the conference. I think that the way we have it outlined, that I would give the introduction, which would talk about all the general stuff that we have been talking about, the overarching issues, the fact that the architecture exists, that it just needs to have the infrastructure, I would do that and then go from there into the personal health dimension, unless there is someone else who wants to do the personal health dimension, in which case I would be more than happy to just do the introduction.
How much time will we have?
DR. DEERING: These are 90-minute sessions, I think.
DR. LUMPKIN: Jeff, you will then be doing the caregiver, and then Barbara and Dan, how did you want to split that up?
DR. STEIDEL: I'm just not sure of my timing. I think I'll be able to come, but I'm not positive.
DR. STARFIELD: We'll certainly work together on it.
DR. LUMPKIN: So whichever of the two that are there will do the presenting. If you are both there, then I think it would be helpful for you to be up there to help us answer questions.
Whatever the time frame, I'm figuring about two-thirds of the time for us to present and one-third for questions. So if we have an hour and a half, that would be roughly 15 minutes a portion for the four pieces. I'd probably do a little bit less since I'm doing two of them. Then if it is less time, we would just shrink it appropriately.
(Discussion off the record regarding meeting and presentation arrangements.)
Agenda Item: Progress on Sections
DR. LUMPKIN: Let's move on. Now that we have got the concept, we are talking about a document. We are going to do three of the five pieces in the first phase, which is why do we need it, what will it do, what is needed to enable it, the issues are, we have talked about other sections, KM, knowledge management -- what is DS? Decisional support. Decisional support or decision?
DR. DEERING: Decision.
DR. LUMPKIN: Decision support.
DR. DEERING: Should we start writing this on the outline? We actually had an outline from October, but we may be well beyond that. If it is not in your packet, I think we made copies of it.
DR. LUMPKIN: Let's just hand it out.
DR. DEERING: It may be something that we just want to jettison, but let's make a decision that we do or don't.
DR. LUMPKIN: We've got five items here. Let's first decide whether or not we want to jettison any of them, because these would tend to fit under the rubric of what is needed to enable it. We need to have some discussion on that.
I think that probably knowledge management and decision support would stay in. We need to have some discussion of that technology. It is intelligent, it is built into the system. Is that agreeable?
Knowledge generation.
DR. STEIDEL: These would it into the what does it do section?
DR. LUMPKIN: No. I think what we have described as the dimensions is the heart of what does it do. When we talk about improving quality and so forth, we will discuss decision support and knowledge management and those things, getting the protocols available. But there are some things under technology, enabling, what do we need. Part of it we will deal with because we will say we need the recommendations on the computerized patient record. By the time we present the paper in June we'll have that piece. So I think within this context, we do need to have some description of currently existing technology, consistent with the fact that this needs to go prime time.
DR. BRANDES: You're saying you want to enable decision support, or decision support is an enabler of something else?
DR. LUMPKIN: I think we are saying that the NHII is a collection of technologies. One of the technologies that is part of the NHII is decision support.
What about knowledge generation, research?
DR. STARFIELD: Are we on this outline?
DR. LUMPKIN: I was actually going to go from the agenda to -- and then use that to go to the outline.
DR. DEERING: So we have added a section on technology?
DR. LUMPKIN: The third section that we talked about this morning, what is needed to enable it. I think we need a section on standards.
MR. BLAIR: As an infrastructure to enable it, I tend to think of infrastructures requiring laws, regulations, standards, policies, practices. Those are the things I tend to think of when I think of infrastructure. Is that consistent with what you were looking for?
DR. LUMPKIN: Yes, as long as we add in technologies. And technologies, knowledge management, one, decision support is another.
DR. DEERING: No, but does that come under technology, or is that under what it will do? Isn't knowledge management decision support more a function than an enabling --
DR. LUMPKIN: Yes, it is both.
DR. BRANDES: That was what I was getting to before, was that according to what I learned at this conference, all this great decision support and electronic health records, that could all be integrated in all these tools that could be used if only the infrastructure were there, in terms of the standards and the laws right now. The reason these things are not being used widespread in an integrated fashion is because we don't have the standards. But when the standards and the infrastructure are in place, it is going to enable these decision support capabilities.
DR. LUMPKIN: And I accept that. I'm just thinking, as we are writing the document for the informed, but not necessarily highly informed target, it is a chicken and egg. We don't have the electronic encoding and agreement on terminology, therefore we don't have implementations of decision support. Because we don't have decision support, no one sees the need to have the terminologies and the standards.
So we need to spend a little bit of time describing the technology that is currently available, as a raison d'etre for having the policies and the procedures and the standards. So we would describe the policies, procedures and standards and the technology, and that would give us another opportunity to point out that what we need to do is -- we got a lot of the pieces, we just need to put them together in a consistent fashion.
MR. BLAIR: Could I wordsmith slightly on the word technology?
DR. LUMPKIN: Yes, please.
MR. BLAIR: I don't want folks to think that we are defining a specific technology or that we are going to list them. In fact, you weren't when you started to list decision support. They tended to be functions enabled by technology.
DR. ZUBELDIA: You're going to call it enabling technology?
MR. BLAIR: I'm still trying to get away from an implication that we are specifying a technology, but when we say decision support, that could be -- that is a technological function as opposed to a technology.
DR. LUMPKIN: Yes, I think I am inclined to go with functions and leave our the technologies. Then when we describe the functions, we may indicate some of the technologies required to enable them, that either currently exist or are required to enable them.
So the functions would be knowledge management, decision support, the policies would be things like universal access. So we are going to need to populate these laws, regs and standards. Maybe the best way to do that is to ask all of the committee to do that electronically, and I'll pull it together.
DR. STARFIELD: You want each of us to start from scratch? Is that what you're saying?
(Simultaneous discussion.)
DR. DEERING: I think we could probably take a stab at it, not in the standards because I think my office would probably need more help with it, because there are so many things in the works out there, and I think there are people who are knowledgeable about standards. So I would certainly like someone to take the lead on populating the standards section.
MR. BLAIR: I can do that. I think what we would probably look for is categories of standards.
DR. LUMPKIN: Yes, we want to keep this fairly high level. So the first whack at it will come from Mary Jo with help from Jeff.
MR. BLAIR: When do you need me to have that to you?
DR. DEERING: Remembering that we are also going to be looking for a writer and we're having to collect all this, and we are probably not going to get anybody on board before Christmas, I would say getting it somewhere, I would say by the end of the month. Is that too late in terms of when we need to be on this?
MR. BLAIR: Probably better by the first of the year.
(Simultaneous discussion.)
Agenda Item: Revise Draft Outline/Insertion of Privacy and Confidentiality, Verification, Opt In/Opt Out Policies in Narratives, and Review Process
DR. LUMPKIN: I think within that context, we get to deal with the things under sections. So let's look at the outline. Are we comfortable that we don't need an administrative dimension?
DR. STARFIELD: Nobody has really conceptualized it well enough, for me anyway, to think about what it would be.
DR. BRANDES: My only concern is that the administrators and the payors are the people who are going to pay for all these technologies. If you don't take their needs into account, which I don't think they are, then you are missing a major piece in here.
DR. ZUBELDIA: A subset of the caregiver dimension.
DR. BRANDES: It is a subset of all of it.
DR. ZUBELDIA: Yes, but more of a caregiver dimension than anybody else's.
MR. BLAIR: My thought is that they are one of the users. They take aggregated information or selected information, but the information that is on this infrastructure -- I don't know.
DR. LUMPKIN: Let me suggest how we would deal with that. They are primarily involved in the caregiver dimension. I think when we do the writeup of that, we need to talk about the interplay of the caregiver and the administration and the finances, the payors, the administrators, and how the exchange of information occurs.
So in the Venn diagram, they are a little subset of the caregiver.
DR. DEERING: I see a political pro and con, and I actually only see the pro, but just to spell it out, I think people have recognized that historically, it has been the administrative dimension that has driven all the discussion of automation and health informatics. That was one of the things that this effort was trying to get away from. So the pro of that side, of not teasing it out, is to make it clear that this is no longer driven by payment for health care services.
The con is as Wayne has said, the billions of dollars of investment that are lurking out there are all around the payor and administrative side of it. We don't want them not to see themselves in this.
DR. STEIDEL: I think we may not want them to see themselves in this, because they are undergoing a tremendous amount of work right now, ramping up for the requirements of HIPAA. We come out with the NHII and put in there in big words, administrative dimension, all of a sudden they are going to scream, DHHS wants us to do something else. We may not want them to do anything else.
DR. FRIEDMAN: I would suggest that this might be a particularly good area to test out over the next few months. On the one hand, I also like the notion of not having this driven by administrative needs, and at the same time, I also see a disadvantage in saying we are going to fold into the caregiver dimension, because I think that could -- I am feeling particularly paranoid today; I think that could raise fears that the caregiver dimension -- that caregiver data are going to be --
DR. STARFIELD: (Comments off mike.)
DR. FRIEDMAN: Yes, exactly.
DR. LUMPKIN: Let me suggest that I will try to try something out in January. What I am going to say is -- and I'll try to play around with it, but basically if we go back to our Venn diagram, the Venn diagram, the current paradigm is, we've got administration and then we have clinical, and they overlap. And really, the overlap isn't necessarily consistent with the views that we are talking about, except for the fact that we are talking about three dimensions. You almost have to describe administration in the third dimension.
There is information that is pertinent to the person that can only be received from administrative purposes. So while we will acknowledge that those relationships exist, the scope of what we are attempting to do is to deal with this piece of it, and we are just going to acknowledge that this other piece is there. HIPAA has had a major impact, but we are going to focus in on the business of medicine rather than the finances of medicine.
DR. DEERING: The thing that suddenly occurred to me, speaking just as a consumer right now, is that I want a lot of that administrative and financial stuff as part of my personal health dimension, because I am sick and tired of trying to sort out my payments for bills and my scheduling and my reimbursement issues and this, that and the other.
So I don't know quite how that fits into what you just said, but I was just realizing, much to my own surprise that I would want my personal dimension to have those components in it.
DR. LUMPKIN: So what we are really saying is that whatever has developed will need to have hooks, so that the onus -- particularly since we are focusing in on the department right now for this piece, and our recommendations from this piece will go to the department and Congress, will be to develop this portion of it as well as the administration portion that has been developed, and then as they are being developed, to integrate sources of information. So as we develop the words, we need to add something primarily to the personal and to the caregiver, as they describe it in computer lingo hooks that can grab financial information on the personal side and hooks that can grab and exchange information on the caregiver side.
DR. ZUBELDIA: But also from your personal view, you should be able to see all of the administrative part of the caregiver's information. So you are still going to see it through the caregiver's information.
DR. LUMPKIN: But the insurance companies have to do that, because they have to do that for applications to departments of insurance, but that is outside the --
DR. ZUBELDIA: But even the HIPAA X-12 eligibility and benefits transaction conveys a lot of the benefits.
DR. LUMPKIN: So I think where we are at is that we agree to finesse administration. We are going to mention it, we're going to give them their due, but they ain't getting their own Venn diagram.
Current issues. I think we have touched on how we're going to do that.
DR. DEERING: I liked the much more succinct outline for the first page, because I think there is some movement there.
DR. LUMPKIN: So I think we can move this around. Next steps we will develop after June. So I think we can restructure this outline to be more consistent with the overall outline we developed this morning.
DR. STARFIELD: Yes, including the need case for --
DR. LUMPKIN: Right, which is really what we are looking at under purpose.
DR. STARFIELD: No, it is not purpose. We know what the purpose of this stuff is.
DR. LUMPKIN: You're right. The introduction needs to talk about the need and the purpose.
DR. DEERING: At the cost of being absolutely redundant, our new outline, the three major sections between now and June are why do we need it, what will it do and what is to enable it. Under the what will it do, we will include the three dimensions, that is where we will include some of the functions, described as functions, what is needed to enable it. The only discussion of technology under what is needed to enable it will be both current and needed technology to enable those functions.
DR. LUMPKIN: I think I like the way you changed it, which wasn't exactly what we said the first time we went through it, which is that we take what we had just finished describing -- we talked about infrastructure, what is needed, as being --
DR. DEERING: The standards, laws, regulations, policies, practices, and we originally had technology in there.
DR. LUMPKIN: We changed that to functions, but instead of putting it under what is needed, which is the infrastructure, we move functions up to the section of what does it do, a description of the functions. So it would be the dimensions, the functions, knowledge management, decision support, then it would be what is needed, which would be the infrastructure, the laws, regulations, standards, policies and practices.
DR. DEERING: And where do we get at what we have talked about as currently existing and needed technologies? Did we dump that totally in favor of just functions?
DR. LUMPKIN: Yes. I think that the technological basis for what we are talking about exists. It is our ability to use that technology that is the obstacle.
DR. DEERING: Then post June is what do we need to get there, the respective roles for both HHS and others.
DR. LUMPKIN: And actually, by defining the laws, regulations, standards and policies and practices, we will pretty much get into what it is that HHS needs to do and what the SDOs need to do in order to enable those.
That then leads us to the question if data models. I just don't think they fit.
MR. BLAIR: I think that is a category under standards.
DR. BRANDES: Is the HL7 reference information model that they are putting together, is that a model of all the processes in health care?
MR. BLAIR: It is a model, and it is an important model. It has a certain purpose. I don't know if we are going to wind up referencing any specific thing. Its use is to try to help HL7 develop message format standards on a more rapid basis in the future that is more interoperable, so its purpose is not the same purpose. Now, can it be used for other purposes? We'll see what happens when it is completed.
DR. ZUBELDIA: There is an equivalent X-12 data model for these transactions. NCDPP has a model for pharmacy. So it is just data models.
DR. LUMPKIN: The issue for us, the reason why you make like an Australian data model, is so everybody has a reference. You are really talking about a data dictionary that everybody agrees to use. Just like we all speak English, we all agree to use the same dictionary. That is really what we want.
I think that we are approaching this from a totally different way than I see them approaching it in Australia, which is that we can agree to a data dictionary; let's now by defining what is in the data dictionary, we actually define the uses. We are defining the uses which by implication dictate what needs to be in the data dictionary. So I think I like that better.
So it all goes along by the quote by Winston Churchill, which says, you can always count on the Americans to do the right thing, but usually after they have tried everything else. Maybe we have tried everything else before that.
Privacy and confidentiality, verification and those, I think we have handled.
DR. DEERING: Privacy could go under policies and laws, I would assume, and practices? The privacy and security?
(Simultaneous discussion.)
DR. DEERING: We now have HIPAA under next steps, but considering that it may be done by then, maybe we should play this by ear for now?
DR. LUMPKIN: Yes. Well, HIPAA is not done, the first round of HIPAA, the proscribed round of HIPAA. Our challenge of course would be as a committee is to begin making recommendations for new areas where standards could be established.
DR. DEERING: At the outline, are we doing away with the history of NNII activities? Or should that be an appendix eventually?
MR. BLAIR: By history, are you meaning what is being done in other nations around the world?
DR. DEERING: The way it is in the current outline, it is under the introduction. The first bullet under introduction is definition. We know how we are going to somewhat reorganize that. Then there is a separate subsection that says short history of NHII activities, the high performance computing act of 1991, the President's information infrastructure initiative of 1993, international efforts, HIPAA, the concept paper and the work group. So it is a broad context setting.
MR. BLAIR: How would you feel if it wasn't called history, which implies that there is some type of substance of history on NHII? I tend to think there is more of a background that is leading us up to it. What do you think?
DR. STEIDEL: I think this section is important. Calling it background might be a little bit better, but I always like the stage to be set if something has been done in the past.
DR. LUMPKIN: But I would as we have got our very simplified outline, why we need it has to be up front. Then as a transition to what it will do at the end of that section, or in between, would be what we are calling the history and background.
Anything else?
DR. BRANDES: Does it say there on the page about benefits of NHII what it will do?
DR. LUMPKIN: Yes, it says what it will do.
DR. BRANDES: Also stakeholder dimensions would be integrated?
DR. LUMPKIN: I think they are integral to the dimensions. What did you say?
DR. BRANDES: The second page, second section of the outline, stakeholder dimensions, basically the dimensions --
DR. LUMPKIN: Those form the core of what it will do. Those plus the functions.
This definitely highlights the wisdom of having a face to face meeting. Trying to do this on conference call and by email has not been overly productive. It was been actually very productive.
Agenda Item: Web Resources
Web resources is the last item.
DR. STARFIELD: What did we do with the enabling mechanisms in here? Did we put it in?
DR. DEERING: It is not currently on here. It would come -- what I had is roman numeral three on page three, current issues affecting NHII. That is just some parts of the enabling. They are blended into -- they are part of the enabling section.
DR. HSU: A couple of months ago I presented two methods for helping the work group communication within the work group as well as what you are proposing, which is communicating to the public. So the two concepts were the listserve which we gave you a month ago, and then the second one is a website.
So what we have here is just a draft. It has been launched and is online now under the URL at the top of the page, www.health.gov/NHII. At this point, we have only put up resources for this work group, so Wayne and I gathered resources on the web, and there is also a bibliography on there of different reports and programs out there.
The navigation bar is a dummy right now, just to give you some food for thought for where you want this website to go, and we can maybe discuss this over the listserve. But what I have here on the Navguard is a section about NHII, and that would be more for the public. Maybe this could be something we could populate with some of the papers that will come out later from this group. About work group is about the memberships and more information and history from the NCVHS site.
The third category is reports. That would be a place where you could put any of the reports that do come out from this work group, if you want public comment later on. And NHI resources is what you have here.
So please give us feedback and let us know what you want, if you even want the website to go on.
DR. BRANDES: Somebody mentioned before about HHS taking leadership on this, and we thought the website would be --
DR. HSU: We did a search and didn't really find anything that really pulls together everything about the NHII, at least within the U.S. So this would be similar to what the U.K. and Australia has.
DR. LUMPKIN: One of the things that we could do after the 28th is put up our presentations, the Power Points, and then look to populate it as we go through. The electronic health records I think we should reference. I think this needs to be a part of the NCVHS' site.
DR. HSU: Yes, it will be.
DR. LUMPKIN: So the extent that we have got documents that we may want to list, including -- for instance under medical record we would want to list any positions the committee has taken, on the second page. The areas that are on here are bibliography, access, code sets, electronic health records, international activity, national information infrastructure, national health information infrastructure, privacy and confidentiality, standards development, and telemedicine. Each one links to another set of links to international activity, for instance, with Australia and Canada and G7. Telemedicine for instance goes to the American Telemedicine Association, and so forth. So I think the only addition would be just to link the NCVHS documents.
DR. HSU: We had talked to NCVHS about putting it on their site, and they preferred that we host the site and link it. We do have an NCVHS link.
(Simultaneous discussion.)
DR. LUMPKIN: I was just thinking that under the resources, as we are putting together the things, so that there are links back and forth between the NCVHS site. This is good.
(Simultaneous discussion.)
DR. LUMPKIN: If I could suggest that people scribble on it what you think ought to be on there, and then -- or email the listserve.
(Simultaneous discussion.)
DR. STEIDEL: I would like to see the URL coming up with HHS.
DR. DEERING: We could always add /NCVHS-NHII. But they don't want to have --
(Simultaneous discussion.)
DR. LUMPKIN: So we'll put our comments on and send them to you. Thank you, this is great.
DR. DEERING: If anybody wrote down any notes on any of the copies of your dimensions that you would like to leave with me, I'd be happy to take them. If not, I took notes.
DR. LUMPKIN: Are we done? I think we have gone through our agenda.
(Whereupon, the meeting was concluded at 3:00 p.m.)