Transcript of the February 22, 2001 NCVHS Workgroup on National Health Information Infrastructure Breakout Session


[This Transcript is Unedited]

National Committee on Vital and Health Statistics

Workgroup on National Health Information Infrastructure

Breakout Session

February 22, 2001

Room 405A, Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, Suite 160
Fairfax, Virginia 22030
(703) 352-0091


Workgroup Members

  • John R. Lumpkin, M.D., Chair
  • Daniel Friedman, Ph.D.
  • Barbara Starfield, M.D.


  • Mary Jo Deering, Ph.D.
  • Betsy D'Jamoos
  • Theresa Krol
  • Steve Steindel, Ph.D.
  • Michelle Williamson

P R O C E E D I N G S [9:00 a.m.]

Agenda Item: Call to Order and Introductions

DR. LUMPKIN: Thank you for the rough draft.

DR. DEERING: I apologize. The better part of valor might have been not to send out anything at all.

DR. LUMPKIN: No, no, no.

DR. DEERING: But I think it certainly stimulates a lot of attention to how much work still remains.

DR. LUMPKIN: I think it is for my part in reading through this, I kind of have two things I took away from it. One is that it is kind of where I thought we might want to spend our time since we don't have a whole lot of time. Second is that -- and where I think we need to start spending our time is on the recommendation piece because I think the other part is more writing of stuff that we have already known.

Second is is I am not sure that we have a message yet and that is perhaps a little bit more disconcerting in a vision. I think that is probably where we also need to spend some time. I don't think we have a message about what is wrong with the current -- what we need to fix, where we need to go and, therefore, how the recommendations will move us in that direction.

As I was thinking about this, it came across to me that what we are talking about is decisions. Health and health care is really trying to make decisions and basically the way it functions is you make those decisions because you have no choice with available information and knowledge and to improve the quality of those decisions, you need to enhance the available information and knowledge.

Now, in the classic model, the physician centric model of health care making those decisions means the physician has all the information they need. I think we are talking about a much broader thing. If we are talking about a collaborative model, where the physician and the patient are jointly making the decision, then it means that those who are making the decision, not necessarily he or she that is making the decision, but those who are making the decision have the best possible information and knowledge that is available.

I just wanted to toss that out. I don't know if that helps to pull things together or scatters it more.

DR. FRIEDMAN: Your overall take is very much in accord with what I was -- I think that it -- first of all, I think we need to specify the purpose of this particular report more clearly and how is the purpose of this report different than the purpose of the earlier interim report. Even though Mary Jo had communicated that previously, when I was reading this, I got confused about what is this report supposed to be.

Second, I completely agree with you in terms of essentially -- I think that we need to clearly specify the goal of the NHII and I think at this point we also need to specify -- I think we need to specify in terms of what is it, what it is going to include and how it should be structured.

I think the time has really come when we need to be clearer about what an NHII is. In terms of the recommendations, I don't know whether those belong in this particular report or in a later report, but I completely agree, John. I think we need to be specific about the recommendations, perhaps not as specific as we are going to be in the health statistics, but we need to be more specific and I think what Mary Jo put in there about legislation, but I think we also need to have a range of recommendations that aren't all dependent on legislation.

Then finally, you know, Mary Jo indicated that one of the things she wanted to do in here was to basically show -- start indicating all of the activities that are currently going on and essentially make a case for it is inevitable but we need to tie it together more. I think we need to do that but do it within each of the three domains because this seems to me to be dominated by the patient medical record domain.

So, I think that is completely congruent -- I think it is congruent with what you are saying.

DR. STARFIELD: Could you briefly summarize what you said?

DR. LUMPKIN: Sure. What I said was I thought that we still haven't quite put it together what it is we think we are doing and that to my mind it kind of revolves around the concept of decision-making and having the best possible information and knowledge available to make a decision. I mean, decisions are now made whether it be in the health care setting or the -- you know, or the public health agency offices or the community or the legislature with whatever information or knowledge is available.

Our goal is to -- in order to have the best decisions is to have the best possible knowledge available when those decisions are being made. Again, this is not something that I am wedded to in this decision metaphor, but it seems to pull some pieces together for me because why do we not -- you know, we talk about the three dimensions and there was a term I liked even better than that in the document. I am trying to remember what that term was.

DR. DEERING: I think I called them spaces.

DR. LUMPKIN: Information spaces or something like that, but the three things maybe go back to dimensions is that if we look at the decision metaphor, it eliminates the need for a management and a quality dimension because administrative issues are all supportive, are part of the decisions that have to be made.

Now, they are health care management decisions, administrative decisions and there are also community health management decisions that have to be made. The same is true about quality. So, you know, you kind of -- if we kind of wrap it around decisions, rather than just, you know, well, I want to look at it, people really don't want to look at the health data unless they feel they have to make a decision. There are a few who are really just curious, but usually there is a purpose to doing it.

DR. STARFIELD: I think that is right and I have had continuing concern about the document in the sense that I think it is really the -- you know, approach that is this great new thing that we are going to have. Whereas, in contrast, you know, I think that we have got to frame it if we are going to sell it.

You know, there are terrible things happening now. You know, the biggest worry that the population has now is medical error. Half the population has been the victim of a -- they say they have been the victim of a medical error. It seems to me that if there is any chance of selling it, it is not going to be on how great things can be in the future, which everybody is afraid of anyway, but how bad things are now and how we are going to make them better and how we can make them better.

So, I would basically turn it right around. I think, for example, this draft starts off with a -- the first sentence is genetics and I thought that is the last thing we want to say, you know, with the fear, big brother, you know, and genetics. I don't want to say anything about that certainly not right up at the beginning.

DR. LUMPKIN: And sort of branching off of that, I mean, it seems to me that the thing that came in, what the goal is is to make the right decisions at the right time and right be defined --

DR. STARFIELD: And it is not being done now. That is the --

DR. LUMPKIN: Yes. What is right for me as a person or what is the right decision for my community and having the information and the knowledge that is needed to be able to make them at the right time because if you delay decisions, whether it be in the health care setting or the clinical setting or you decide not to embargo milk, all of those have significant ramifications, even if you make the right decision but you make it at the wrong time, there will be bad things happen.

DR. FITZMAURICE: Why can't we make the right decisions at the right time? There are some barriers. One, there are barriers to getting information to the physicians and to the patients who are making the decisions and for following through with it.

Secondly, the physician knows an awful and the patient knows an awful little and physicians get a little aggravated if they are going to spend all their time educating patients instead of diagnosing and treating and moving on to the next patient. So, there are barriers to educating the patient. So, they find ways to get more information to the patient so they -- the use of professional time.

A third barrier is barriers to the efficient use of professional time. Do we want this high powered man power and woman power to be spent taking temperatures and monitoring the patients on routine things or do we want to use information technology to do that and give the information back to the professionals to do what they do best, make decisions, make suggestions to the patient about things they want to consider for the patient and then follow up to see if there has been compliance with the recommended courses of action.

So, it kind of pulls together a lot of the things that NCVHS is looking at, privacy, standards, also patient information, information on the web, what is good information and introduces making the best use of the resources we have, using information technology.

DR. STEINDEL: I am getting a little concerned about this type of approach. I agree with the decision. I think what I see as a thrust is maybe we should change this from a knowledge management system to a decision support system, which --

DR. LUMPKIN: Help me to know the difference.

DR. STEINDEL: There is a little subtle difference, not in terms -- in terms of what it really is, I don't think there is much of a substantial difference. I think the end result of what you are saying, there is a little subtle difference, that we are going to help people make decisions better because instead of saying there is this knowledge out here, there is this knowledge that can be used to make this set of decisions and these are your choices.

DR. LUMPKIN: I would actually see a decision support system having as a component a knowledge management system.

DR. STEINDEL: I would like to comment on what Mike was saying -- one thing I am getting disturbed about and this is partially, you know, the plural of anecdotes is not data, so I am going to quote data, which is my personal anecdotes. You know, what I am starting to see in the medical care system is when you go in and see a physician, their whole triage system today is to get to the point where they can make a decision and the decision is a triage decision. You told me enough information that I can run this test. It won't diagnose the problem, but I can get you out of the office. Or you told me enough information that I can triage you to a specialist, who will now make a decision and I will get you out of the office within the ten minutes allocated to you.

So, I am worried about pushing this thing as a decision support system, where the physician can now spend less time with you.

DR. STARFIELD: But on the other hand, to take your example, there are systems out there now, you know, their black box and they are proprietary and stuff, but that can help a physician decide whether to refer a patient or not or what tests need to be done before they refer a patient.

I mean, we haven't got that in there and that is decision support and it is very practical.

DR. LUMPKIN: Part of my clinical practice, which was emergency medicine, you described very aptly, which is the first decision is this person dying and the second is how do I manage them so I can go to the person who is dying and the second is is how do I manage them so I can go to the person who is dying and then come back and then make a decision when it is time to do that.

So, it is not necessarily avoidance of decision, but it is a recognition that I am not going to have the data or the information I need in order to make the ultimate decision. So, how do I manage the accumulation of that information over however many visits the patient is going to have? So, that gets me back to my concept of the right decision, that we are not focusing on making a decision, but we are focusing on making the right decision at the right time.

DR. STEINDEL: I think that is what we need to stress, not the idea of just making the decision, but to give enough information where the decision is made, it is a better chance of being the correct decision.

DR. STARFIELD: That is true for the patient, too. Lots of patients don't know when to go to the doctor, right? Some wait too long. Some go to soon. But that is taking advantage of a current problem, something we know and something that people are very responsive to and building it into something that can help them.

DR. FRIEDMAN: And I do think actually that the interim report was implicitly focused on that.

DR. LUMPKIN: I think that looking at that concept and then kind of looking at where we are and what our goal is, I am also coming back to our decision to do another interim report and wondering if that may not be as useful as we thought it may have been when we decided that a few months ago. I think that there are some other documents -- there is a short letter that is going to the Secretary that is a placeholder.

So, my question to the committee is whether we want to just maybe use kind of this as a start towards writing a final report and sort of spend our time so we can get to that point rather than trying to cobble together another interim report.

DR. FRIEDMAN: I agree. As I said, I was a little bit confused about what the purpose of this is and I think that unless we can add much more specificity, then we would be better off either going directly to the final report or trying to -- or spending our time now less -- more on the explication of what the "it" is and more on the recommendations rather than worrying, you know, in, quote, a second interim report, but not worry about the wrapping.

I mean, I think in some ways it will be most useful is less writing right now and more just trying to pin down -- really pin down, you know, what this thing is, what it looks like, what it includes and what we are going to say in our recommendations.

DR. STARFIELD: And what it is going to solve.

DR. FRIEDMAN: No, I completely agree.

DR. LUMPKIN: And on Barbara's comment, I was really struck by some of the things that have been developed and I don't know if they have been released yet from the Quality Forum, that most of the studies that have been done on the public and what they want is they are much more interested in protection from air and safety than they are in quality and that if you are going to do measurements and report on measurements, they really have to be couched in that way for them -- for the public to really find a use for them.

DR. STARFIELD: They are not the least bit interested in hemoglobin A1C. I mean, they are not. That is not the way they are going to rate plans, just what you are saying.

DR. LUMPKIN: Well, yes, but they are not going to rate on whether or not they are going to manage my diabetes better or the converse, which is how do I know they are not going to manage it poorly. They want to know that the plan is not going to manage it poorly. To that extent, A1C may be of significance.

So, I think that is still an important ticket and that as we -- if we look for our initial hook, you know, that may be the hook that we start off with. You know, what are the concerns of the public about the health and health care. There is the stuff on patient safety. There is a survey that was done by Health Tracks in conjunction with the Pew Environmental Commission and they did surveys throughout the country on the issue of environmental tracking.

DR. STARFIELD: Did Tom testify on this or is this something else?

DR. LUMPKIN: Yes. Well, actually, I was on the commission. So, I saw all these reports and I used some of them because they did state specific reports. And the neat thing about the surveys is they surveyed registered voters, which I thought was an interesting subject to survey.

But, you know, the public is very supportive of having tracking of environmental-related diseases but they were very concerned that states didn't have these systems when they were told that these weren't in existence. So, we can begin to pull some information together that sort of highlights how there is not always adequate data. There is not always adequate information and certainly the knowledge that we have as a nation is not adequately disseminated.

So, it is not where it needs to be in order for the right decisions to be made.

The other piece -- and I am just kind of rambling -- I am sorry -- about the medical piece that I think works for me, is that we imply that it is people making the decisions and it is not the systems. That has always been the issue that has been hard to get out when we talk about knowledge management systems. It seems like every time we do this, docs fear that the computer is going to tell them what to do.

If we put again the person at the center, who is making the decision, that kind of highlights in a positive sense that what the goal of this new technology is to help that individual make the right decision.

DR. DEERING: I want to just throw out just some sort of broad contextual issues that had originally helped motivate us to think we wanted another interim report, but I think, in fact, support we move away from another interim report. But I just wanted to do this as sort of a reality check.

The first was that we knew that the new administration would have lots of other priorities, lots of other big expensive priorities and we certainly didn't want to give them anything that they could say "yes" or "no" to right away. I mean, it just had to be sort of here it is, this is all happening if we were going to tell them anything at all. We are not asking permission to do anything and we are not asking you to spend money yet.

Another concern was that as you said, you know, the next two years are going to be HIPAA driven and the industry out there is already going to be really concerned about the expenses and other human research issues implicit in compliance. The third was that, nevertheless, the market is driving an awful lot of stuff. So, how can we be mindful of that reality plus the need to shepherd cats, as they say, you know, that is what we call the sort of managing evolution.

Then, I guess, the fourth one was how to -- and this is what I would throw into it is that given the reality of the private sector activity, do we want to in our report and in the way in which we get to our final report, demonstrate that the process of involvement is as important as the final paper itself. And I don't know.

I think the approach that is normally taken is that, you know, the staff will write it. We will get a lot of input from you folks and we will send it out from time to time. At a minimum, of course, you know, that is what we would do and given how much is going on, we would certainly want input.

One of the things that we sort of threw in there, you know, as a teaser, as you saw in the next steps, was this notion that this is very much a collaborative effort. No. 1, everybody is doing this. Everybody sort of wants a little bit better coordination. They want some leadership, but they don't want any top down leadership. They just want a sense that, golly, HHS or the Federal Government is looking at this and is taking an intelligent overview approach, doing specific things that need to be done, not doing things that they shouldn't touch, you know, expanding things that are already in the process.

So, whether or not that concept of the process and the collaborative involvement was an important component of not only what we do but how we do it -- and it may not be, but I just put that on the table.

DR. LUMPKIN: I love it. You know, I think not coming out with a final but coming out with something that we will call a working draft that we send out as broadly as possible, to get as many comments as possible, you know, you get tons of things on your desk. You tend to pay the -- you know, here is a copy, read it when you get time. I tend to pay less attention to that than something that says please read that and we need your comments back within 15 days so that we can have the final -- are more likely to read that because you are asking for input.

DR. FRIEDMAN: I do think that it should probably -- you know, depending on how widely we want to circulate it, I think it should probably be as final a draft as possible before we -- if we really want to sort of scatter shot it out and not stamp "Do Not Circulate," "Do Not Quote" on it, then we really need to have it buffed up and ready to go.

DR. STARFIELD: What do you mean by a final draft? Does not mean before the final report or what is final draft?

DR. FRIEDMAN: For me a final draft would be our best internal effort at developing the final report, you know, probably with fuller committee review, probably with fuller review from some of the federal agencies on a do not quote basis but then after we think we have taken our absolute best attempt at it, something that we feel comfortable circulating, where we would discourage people from quoting it, but we would assume, in fact, that -- well, we would assume that somebody is going to circulate it. We assume that it may be -- I don't think we could embargo it, for example. I think we could say this is a draft. We could say do not quote, but I think we would need to assume that it will be circulated beyond the people to whom we send it and that it could end up being quoted or referred to in the paper.

DR. STEINDEL: Would this require the committee to see the final draft -- being approved by the committee or just the workgroup?

DR. FRIEDMAN: I would see bringing it to the full committee before we circulate it.

DR. STEINDEL: I would be more comfortable with that approach and then I could call it a final draft.

DR. FRIEDMAN: That is very much in keeping with what we have laid out for the Health Statistics Vision Report. We are thinking of having something that is actually reviewed by the partners, including NCVHS, approved for circulation and then circulating to the associations and so forth.

DR. LUMPKIN: But I think that as an interim step before we get to that point of reviewing completely by the committee, there may be some selected individuals we would want to send a do not circulate, do not quote draft for their comments.

DR. FRIEDMAN: Yes, I completely agree.

DR. STEINDEL: Would you see this draft being reviewed by somebody within the Department, like the Data Council, so we have some sort of agreement on it within HHS before it goes out?

DR. FRIEDMAN: Seen by individual members, but not institutionally.

DR. LUMPKIN: I am worried that if we send it to the Data Council and they approve it, it now becomes a Department document.

DR. FRIEDMAN: I agree.

PARTICIPANT: Parenthetically, we are very much going to have that issue with the health statistics report. Ed Sondik -- you know, that we discussed yesterday and Ed Sondik and I have been discussing as well.

DR. FITZMAURICE: [Comment off microphone.]

DR. STARFIELD: [Comment off microphone.]

DR. LUMPKIN: That doesn't mean that we may not be able to -- you know, we have already had one presentation before the Data Council on our interim report and that doesn't mean that we may not do a presentation to them and get some feedback. But I don't think we want to officially send it until it is a final report.

DR. STARFIELD: How far do you think we are from that? I mean, it looks to me like we are pretty far.

PARTICIPANT: I think we are very far.

DR. DEERING: What I am sensing is that in terms of what the "it" is, et cetera, that that really is writing. I think at one point or another we have captured a lot of what I have heard here, but we have never succeeded in pulling that part of it together. So, that, I think, is a writing issue and I think Susan may be a little more available and I don't know, but I am sensing that in terms of what the "it" is that we have had it at various places and times.

What I would like to understand is the emphasis on -- I mean, we heard loud and clear that next steps, not just recommendations per se in the sense of the HHS shall enact this or do that, but they really wanted to see steps, almost like mapping out processes or, you know, okay, there is a phase here, you know, and this is what different things have to do. That was where, you know, staff just ever so slightly sketched out what might have been one next step, but I sense that that has got policy implications there, that the way that that step was, you know, presented as a straw person to you sort of in there because it really was a very decentralized effort and what is asked of stakeholders to let us know where they are. Let's build, you know, a set of assessments from the bottom up.

Now, that doesn't mean we need to have completed that before we do the final report, but it did imply that you are asking the people who are in the -- the informatic spender industry, you are asking the people who are in the provider plan. People are being surveyed already about what are they doing and what do they need to do.

They are asking the -- you know, the public health -- representatives of the public health community, okay, so where are you at and what is next. So, what I wanted to understand in terms of guidance is how to interpret this request from our public testimony to flesh out next steps. Next steps for who, you know? Who are the next steps for and who writes the next steps? And then secondly when it is the most specific recommendations, are these only recommendations for HHS so we just go ahead and write them or are they recommendations for federal action broadly, meaning Congress as well and other agencies, like the FDA and et cetera?

So, what is the scope of the next steps? What is the scope of the recommendations? How participatory do you want the process of fleshing those out?

DR. FRIEDMAN: I would say that the recommendations should certainly go beyond HHS and the Federal Government. I think they need to be certainly not in all the detail of an NHII, but they need to reflect the breadth of the NHII, including different governmental levels and public and private.

DR. LUMPKIN: So, let's look at the -- maybe we can sort of think on who that should be. Obviously, Federal Government. So, we would have HHS, Federal Government. Do we see a role -- recommendations for state government? Local government? Health care providers? standards development organizations?

I am pausing because I am needing help here.

DR. STARFIELD: Consumer advocacy groups.

DR. LUMPKIN: Consumer advocacy groups.

DR. FRIEDMAN: Community organizations.

DR. LUMPKIN: Community organizations.

[Multiple discussions.]

-- computer program to connect up to your web's food service and when you run out of milk, it will order milk for you. Why not do it in a way that -- so, I think in that sense, when we talk about the broader consumer industry for the individual dimension, that may be where we would make the recommendations that as people are developing various other systems, particularly as it pertains to things that may impact the person's health, that it would -- that they would give this a consideration, building towards, you know, the more interactive -- the total information infrastructure that is being conceived.

MS. WILLIAMSON: The one question I have when you mentioned health care providers, I am just concerned whether you are focusing strictly on physicians. There is such an avenue with nursing and speech therapists and other providers that need also recommendations and directions of where to go. If they are excluded, you are really not giving health care totally.

DR. LUMPKIN: Oh, yes. That is why I didn't say "docs." But to that extent I think that we need to think about two other groups and whether or not we want to include them under the rubric of health care providers. One is our managed care plan, which many are there, health care providers --

DR. FRIEDMAN: Now they do. A dramatic shift.

DR. LUMPKIN: Then the other piece are the insurers, employers, those people who purchase care if we want to talk about specific responsibilities for them.

DR. STARFIELD: The examples like the one you provided about your mother, I mean we just need to really pepper that report with that kind of stuff. Real problems that real people --

DR. FRIEDMAN: I agree.

DR. DEERING: We tried to with the scenarios the first time around.

DR. STARFIELD: I am not talking about a scenario. I am talking about basic problems.

DR. LUMPKIN: I think that the scenarios are good. I think we should definitely keep the scenarios. The Wall Street Journal article is a good example of just -- just talked to that reporter and it just spoke to her and I think that will help us explain what this is all about.

But I think Barbara is right, the more we can just sort of throw in examples as we start using and talking about responsibilities, you know, if we talk about consumer electronic vendors, there is a perfect example to talk about. You know, here is a case. It doesn't have to be a full scenario. It can just be problem and NHII solution.

DR. DEERING: The other thing -- let me just call your attention to a couple of things here. In fact, let's get a little bit specific here about what we can forget or not forget.

We have had a lot of conversation about how to capture the -- and with the examples, et cetera. On the next steps -- well, we have the recommendation sections and who is going to be covered in these recommendations and I think moving toward sections that say recommendations for and a few bullets under each one is good. I can imagine how that would go and certainly we will have to work it through.

I guess what I am still not clear on is this sense of next steps and whether we want to include in our report the sense of phases and broader process --

DR. FRIEDMAN: I think that we need sort of individual recommendations but I also think we need to lay out a strategy and a federal strategy for realizing the NHII and that is why I -- I suggested to Mary Jo earlier that we all take another look at some point at the interim report or the final report for the Canadian road map, not that we should copy it but I think that it really provides a good example of that approach.

DR. LUMPKIN: It would seem to me that we may want to also -- the questions that we may want to look at are those things that are possible now, those things that require further standard development and those things that may require further research.

DR. FRIEDMAN: I think we should expand that statement. I think that is great. I think now we have a matrix, which is dimensions, whatever we want to call it, audiences for the recommendations and type of recommendations, the legislation, et cetera. I think that is really helpful, John.

DR. LUMPKIN: And we may want to and I am kind of thinking because we are getting fairly far into our hour, that the way we may want to manage this is to have the members of the committee fill in a grid, fill the extensive grid of suggestions.

DR. STARFIELD: The committee or the workgroup?

DR. LUMPKIN: I am sorry. The workgroup.

DR. FRIEDMAN: We have those three dimensions. I can't think in cubic terms. I think in terms of three dimensions.

DR. DEERING: So that I know what I am going to send out to ask to fill in, can you sketch it for me?

DR. LUMPKIN: I think that -- well, it is good that you asked that question because I am not as clear as -- one thing would be under each heading that we just listed of where we would want to make recommendations. So, one heading would be "Federal Government." One would be "HHS." One would be "State Government."

We should ask for recommendations and I think that the recommendations would be short term recommendations and then perhaps long term recommendations; short term being those things that can be done given the current level of technology and standards. Obviously, long term development, that is where we get into -- let me give an example of a short term.

For instance, AHRQ could fund patient centric knowledge bases to help, you know, starting to develop tools on helping people make right choices about living with illness. In the long term, HHS would increase their investment in the standard development process to kind of push it.

It is not working for you?

DR. STEINDEL: No, it is working but I am looking at the differentiation between what is possible today from a technology point of view, what is possible tomorrow from a technology point of view and what I am seeing is the biggest barrier is financial, not necessarily the technology. You were talking about it in terms of like what needs research and it is really not what needs research. It is what needs resource commitments.

DR. STARFIELD: I don't think the problem is financial. If there is a business case, the commercial sector will do it and is doing part of it. The biggest problem is the coordination of all the efforts. You know, there is a lot going on in pulling it together. So, it is not kind of --

DR. STEINDEL: What it is saying is that a lot of the pieces are all there in various parts. There needs to be some way to bring it all together and that is what I am looking at is more of a future direction, is how do we provide infrastructures that allow these people to talk and work together.

DR. FRIEDMAN: I think what we need to do is come up with a somewhat -- flesh out John's notion of the type of recommendations. Some of them are financial. A few of them are technological. I think that is probably the least of it. Some are legislative.

DR. LUMPKIN: Let's try to come up with the recommendations. Let's brain storm on those. Let's have as a subcommittee send out and have people just sort of spend some time writing down and not worrying about whether or not they are short term or long term.

DR. STARFIELD: By each of those sectors.

DR. LUMPKIN: Right, by each of those sectors. And then come back later and classify them, but just kind of come up with any -- and don't be worried about whether or not they are really like off the wall or out of the box or

-- we like them out of the box, but anyway, completely off the wall. Then let's spend our next committee time trying to sort them and the recommendations at the end.

DR. STARFIELD: What was the third axis of the matrix. One was dimension. What was the third one?

DR. LUMPKIN: One face of it is dimensions. Under "Dimensions" we have your community, your provider and your personal. That is where we left it.

Another face of the matrix is sectors and under it we have your public, federal, state, local, and your private, which we can further subdivide.

The third face of the matrix is type of recommendations or recommendations by type. I think what we are saying is that we need to further refine how we think of those types. So, for example, each recommendation would be of a specific type that would pertain to the community, the provider or the personal or more than one and to a particular sector or sectors.

DR. STARFIELD: I don't understand what "type" means.

DR. DEERING: It is pretty simple. We are going to share with all the workgroup the list of identified sectors quite specifically and certainly they are also invited to add new sectoral stakeholders as well and then make recommendations. It is that simple for now.

DR. LUMPKIN: For now.

DR. STARFIELD: Aren't we going to talk about what kind of problem we are hoping to solve? Is that what you mean by "type"?

DR. LUMPKIN: I think that can be included in there because that will be helpful as we start writing the document to tie it into examples that it is trying to address.

[Multiple discussions.]

Now, we should also have the caveat that not every recommendation easily has an identified problem. So, people should feel free to throw in recommendations at this particular stage.

DR. STARFIELD: And someone will find a problem.

DR. LUMPKIN: Because we want to brainstorm and we want to get out as many recommendations as possible. So, ideally, they should list the problem and go ahead and list the recommendation anyway.

DR. STARFIELD: I have made a list of about ten problems, which I will share with you. Most of them came up around the table.

DR. LUMPKIN: I am -- in fact, a week from now, there is the conference on HIPAA that is some HIPAA conference in Washington. So, if it is agreeable, I am going to try out this right decision at the right time model because I am speaking on NHII and HIPAA. So we can perhaps sort of play around with that and I will get some feedback.

DR. STARFIELD: [Comment off microphone.]

DR. LUMPKIN: It is jointly sponsored by a lot of big groups; the Hospital Association --

AUDIENCE: This is the second iteration.

DR. DEERING: I think that we might start looking for other conference opportunities. I stuck something in your gray folder; Microsoft's Healthcare Users Group, that is really specializing in developing hand held solutions and other networking solutions, is having its annual MS HUG meeting in October, end of October, early November. Those are the gung ho techies and including some physicians who designed it themselves with a little bit of seed money to -- and they just thought that, you know, we might try and assemble a list of conferences where we know there are important stakeholder groups that may or may not be thinking in these terms.

DR. STEINDEL: [Comment off microphone.]


DR. STEINDEL: Peter Wegeman's conference towards the electronic patient record in the spring.

DR. FITZMAURICE: In Boston in the second week of May.

DR. STEINDEL: I don't know if it is too late to get on the conference. Maybe next week, two weeks, when we see Peter, we might want to --

DR. DEERING: Maybe we could ask him if he would save a slot for somebody.

DR. FITZMAURICE: [Comment off microphone.]

DR. DEERING: How about for Jeff?

DR. FITZMAURICE: Jeff Blair? He may be already speaking there.

DR. DEERING: It could be a two for if he is already going. We would help him with the second presentation.


DR. DEERING: Time line, I will get you a list of problems immediately. I am going to draft an e-mail immediately and send it out, I hope by the close of business if the e-mail hasn't -- which reminds me, we need to update the list of committee members because Vickie Mays is not on our committee. I saw her in the hallway and she said "no," she had not wanted to be -- so, that was a mistake.

But on the other hand, there was the man, the other new man, who is the V.M.D.

DR. FRIEDMAN: He said he wanted to be on the Subcommittee on Populations.

DR. DEERING: Okay. Good. So, is there anybody else we are missing, who should be on it. Basically, just Ted is the only new arrival.

How about if we give people five working days or something to reply with their recommendations and then they can synthesize them and send them back out and schedule a conference call in a month. I am worried about the pace. I mean, I am worried that we have been at this process for a very long time. I also have to be candid and say there are resource issues for our office. This doesn't show up on the performance descriptions, the job descriptions of any of my staff. So, it is always hard to fight for time and I don't know whether --

DR. LUMPKIN: Let me ask you this question. Why not?

DR. DEERING: Because our office does Healthy People. We sort of eke it out because we have an established presence and the boss is really nice. But I was thinking at one point I might see whether -- talk to Marjorie about having Ed just make a point that this is important and I have made the point especially for the next six months or so that I saw it as a higher priority.

DR. LUMPKIN: Well, you know, it may be an issue when the new assistant secretary is appointed that should be raised about some of the things we are doing with the committee. Again, maybe when we have -- well, when we have new leadership in the Data Council, that may be an issue that is brought up because, obviously, for us and for people who are working in the standards area of HHS, working with the committee is considered to be part of their job.

Part of our problem that we have with the Population Subcommittee and other subcommittees is that people do it as a hobby and we need to perhaps look at raising the issue in the Data Council. I mean, I would be more than willing to do that once we have got the leadership that --

DR. STARFIELD: Well, they asked John to stay on for awhile. So, he is okay, but I guess --

DR. LUMPKIN: Is he back?

DR. STARFIELD: He is back. But I guess the other -- the co-chair -- but the other co-chair is probably going to be changed.

DR. FITZMAURICE: I think it was three years ago that there was a major push to get support for NCVHS and the Department did respond.

DR. STEINDEL: It is not true at CDC. Those of us who are here are kind of begging for the time and the money.

[Multiple discussions.]

DR. DEERING: I had a preliminary discussion with Bill Braithwaite to try and -- I was thinking that it would be helpful if the staff of the various committees talked more regularly and more in depth and Bill especially might be very helpful as we flesh out the --

DR. LUMPKIN: But as a follow-up, I will follow up with Marjorie -- when the new principles get introduced, I will try to follow up with the various respective agency heads about staff and importance of people not being penalized essentially for supporting the committee.

DR. STARFIELD: Has Peg left?

DR. LUMPKIN: The last I heard she is going to spend a little time at home and decide what she is going to do. She has got small kids. So, it kind of fits in with her plans.

DR. STARFIELD: Who is acting head now?

DR. LUMPKIN: Jim. I wouldn't wish that on him.

DR. DEERING: I expanded the e-mail list. There wasn't anything additional to add to this first --

MS. JACKSON: [Comment off microphone.]

[Multiple discussions.]

DR. LUMPKIN: I don't have my calendar. We also want to make sure that we can get the two who aren't here.

[Multiple discussions.]

[Whereupon, at 10:00 a.m., the workgroup meeting was concluded.