DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
WORKGROUP ON NATIONAL HEALTH INFORMATION INFRASTRUCTURE
June 24, 1999
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
CASET Associates, Ltd.
10201 Lee Highway Suite 160
Fairfax, VA 22030
- John R. Lumpkin, M.D., M.P.H., Chair
- Jeffrey S. Blair, M.B.A.
- Daniel Firedman, Ph.D.
- Richard K. Harding, M.D.
- Clement Joseph McDonald, M.D.
- Barbara Starfield, M.D., MPH
- Mary Jo Deering, Ph.D., Lead Staff
- Mark Carleton
- Betsy D'Jamoos
- Hetty. G. Khan, RN, MGA, MS
- Sandra Haydock
- Steven J. Steindel, Ph.D.
- Maureen Williams, ASMB
- Cynthis Baur, ODPHP
- Brien Thiel, Joint Healthcare Informatics Technology
- Leslie Hsu, ODPHP
- Michael Fitzmaurice, Ph.D., AHCPR
- Rob Kolodner, Ph.D., VA
- Robert Mayes, HCFA
- Gail Janes, Ph.D., CDC
P R O C E E D I N G S (8:10 a.m.)
DR. LUMPKIN: My name is John Lumpkin. I'm the chair of this subcommittee or Work Group on National Health Information Infrastructure. I also chair the NCVHS, and I'd like to welcome all of you to our meeting today as we begin move forward in a process and our project which I think is a key one for the National Committee, as well as health information in the country.
When we look at the work of the overall committee, in many ways we are a divided committee. We have the left brain work in the standard setting process, which needs to be very technical, which has a great impact on a lot of the business processes, financial processes so far in health care, and with the Work Group on the Computerized Patient Record, has a lot to do with the business of health care, which is providing patient care.
Then we have the right brain activities of the committee, which is the activities related to populations, public health, surveys, integration. Sort of serving as the cerebellum, the center of balance is the privacy and confidentiality committee, which sort of keeps us on track.
Well, this committee is the midbrain and corpus callosum. It brings all the pieces together and integrates them. I think that's why this committee is so important, because if we don't have a vision that we're working towards, and we don't have a national vision on how health information is going to be that transforming technology that will move health care out of the nineteenth century into the twenty-first century, then all the work that we do becomes little pieces of here and there of health information infrastructure. And then we'll have to have a more comprehensive vision, and that's really our charge.
So having said that and done my introductions, I think we are going to go around the room. There are some new faces here, and I'm going to ask everyone to say who they are, where they are from, and what role they expect they will have on the committee.
DR. DEERING: I'm Mary Jo Deering from the Office of Disease Prevention and Health Promotion. I'm the lead staff to the committee. Our office has lead roles in the areas of telehealth for patients, consumers, and care givers. I have copies of our latest work which is, "Wired for Health and Well Being: The Emergence of Interactive Health Communications," from my science panel on interactive communication and health. I only brought a few copies for committee members from out of town. Then anyone else would like one can see me afterwards. There aren't enough to go around.
That's my introduction.
MR. BLAIR: I'm Jeff Blair. I work for a small, little consulting company out of Boston called the Medical Records Institute that puts on a national conference each year on how we are doing towards electronic patient records. The interesting thing about the little company that I work for is that aside from that conference, the director and myself spend most of our time during the year immersed in the development of health care informatic standards, because that's our passion, that's our interest. So we know how important it is to being able to build a health care information infrastructure.
In my prior life I was with IBM. I was also involved in a number of projects where we were attempting to see what we pull to create an information infrastructure to facilitate integrated delivery networks in large managed care organizations to be able to pull together things across the continuity of care. So that essentially is the background that I bring to the table.
MS. WILLIAMS: I'm Maureen Williams. I'm in the Office of the Assistant Secretary for Management and Budget. Hopefully, I'll be able to provide whatever needs to be done from our office for Mary Jo. My interest though comes from a prior job I had a number of years ago at St. Elizabeth's Hospital, which everyone in the Washington area knows has major issues these days. But I was one of the earlier proponents of computerized record systems and integrating record systems with the billing system, with the court system. I just feel that what you are doing here is the end result of what we attempted all those years ago.
MR. CARLETON: I'm Mike Carleton. I'm also from the Assistant Secretary for Management and Budget. I'm the deputy director of the Office of Information Resources Management. The parts of that work that probably coincide with this group are reviewing major IT investments for the department and operating the department's Website.
DR. STARFIELD: I'm Barbara Starfield. I'm from Johns Hopkins University, and I'm part of the midbrain of the committee.
MS. HAYDOCK: I'm Sandy Haydock. I'm with the Health Care Financing Administration. I'm the chief information technology architect there, and I'm staff to the committee.
DR. STEINDEL: I'm Steve Steindel from the Centers for Disease Control and Prevention and I'm staff to the committee.
DR. FRIEDMAN: I'm Dan Friedman with the Massachusetts Department of Public Health, and I'm a member of the committee.
MS. BAUR: I'm Cynthia Baur. I'm going to be working with Mary Jo in the Office of Disease Prevention and Health Promotion.
MR. THIEL: Good morning, I'm Brien Thiel, a visitor and representing the Joint Healthcare Information Technology Alliance, because our membership is very interested in the subcommittee's work.
MR. BLAIR: Could you tell us a little bit about what that organization is, the Joint Healthcare Information Technology Alliance?
MR. THIEL: Sure, it would be a pleasure. It's a coming together of five other organizations which are more prominent than the sole one of you will. That's CHIM, CHIME, HIMSS, AMIA, and AHIMA. Is that enough acronyms for one day.
DR. DEERING: Why don't you spell them out for the record?
MR. BLAIR: Other folks may be interested in the roles of the different organizations that are part of JHITA, because it's an interesting alliance.
MR. THIEL: Right. CHIM is primarily information systems developers. It's about a 106-107, primarily corporations, software developers and consultants. CHIME is CIOs. HIMSS is largely I guess everything from students, academia, providers. It's kind of the for individuals if you will. AHIMA are those that work the medical records within health care institutions. And AMIA is similar to HIMSS. I've got to be very careful about my characterizations here, but they are well known for their national conference and their educational opportunities.
MR. BLAIR: AHIMA or AMIA?
MR. THIEL: Both of them.
MR. BLAIR: AMIA is the American Medical Informatics Association. That's mostly care givers, physicians, professionals interested in medical informatics. The distinction between that and HIMSS is the HIMSS are for the most part vendors and the providers and the management engineers that are part of health information systems. They are more implementing and building the systems. The CHIM is like the trade association of health care informatics vendors. And then CHIME is the chief information officers of providers.
MS. HSU: Hi, I'm Leslie Hsu from the Office of Disease Prevention and Health Promotion. I'm on the team as the consumer health informatics advisor.
DR. FITZMAURICE: I'm Michael Fitzmaurice, senior science advisory for information technology at the Agency for Health Care Policy and Research. My bend is towards showing how health information technology can improve the quality of health care. So part of what I do is vision, looking to see what is coming in the future. Then the second part is trying to make sure the infrastructure is there so that we have standards for data, so that researchers can pull this together and put some numbers, put some quantification on what are the benefits and what are the costs of health information technology.
DR. KOLODNER: I'm Rob Kolodner, associate chief information officer at the Department of Veterans Affairs Health Administration. I'm here because of both the interest in the infrastructure with VA being some of the shapers of the infrastructure.
DR. MAYES: I'm Bob Mayes with the Health Care Finance Administration. I'm the director of the information systems group for the Office of Clinical Standards of Quality. We're responsible at HCFA, in addition to some production systems for clinical standards use of development at HCFA. My main interest is in the area of information management across organizations. Obviously that depends a lot on having a well working infrastructure at a national level.
MS. JANES: Gail Janes from the Epidemiology Program Office at CDC. I'm a visitor to the subcommittee. EPO is working with a number of the states, Dan Friedman in Massachusetts, as well as five other states on a project called the Assessment Initiative, which is focusing primarily on innovative ways of collecting, linking, and disseminating state data.
MS. D'JAMOOS: I'm Betsy D'Jamoos. I'm deputy assistant secretary for policy initiatives in ASMB. I'm here because I work on a slew of cross-cutting issues in the department at the policy level. It has budget implications. There are a variety of applications, and in settings where there aren't always data or structure-related folks at the table. So I bring that perspective to the table.
DR. DEERING: If I could follow-up on that, I know that there is a meeting starting at 9:30 a.m. of the team that is looking at information for decision-makers as one of the cross-cutting budget themes. My name is on the list, but I can't go. I'm hoping to send a representative, because I know that that has to go forward at a fast pace. But clearly, there is a lot of overlap between the broad view of this committee and what they are looking at, even though I think they are a little bit more narrow in their definition of what they are doing.
DR. MAYES: I'll be going to that.
DR. DEERING: Are you going to be going to that? I think our input would simply be don't think too narrow.
DR. LUMPKIN: I would like to welcome those from ASMB. It's a new acronym for me, so I'm sorry. The scary thing about this is I guess I've been going to these meeting long enough so that when I hear these strings of acronyms, I actually know what they are, which is not part of my job description as a state health official.
I particularly welcome them, because first of all, the work of the National Committee is really facilitated and enabled by the hard work of the staff members in the federal government. As people coming from outside the federal government, that really is appreciated, because it would be impossible for us to accomplish our tasks.
But when we look at some of the key efforts that we're moving towards, which is more consistency across organizational structures, both at the state level, as well as the federal level, it is clear to me in our operation in Illinois, and I'm sure at the national level that when the folks who hold the purse strings ask the questions of does this piece fit with that piece, and I need to know before I fund it, that's when real change will happen. So we're thrilled that you are here.
The major item on our agenda -- do we have the updates yet?
DR. DEERING: I think the photocopier got clogged. I'll just explain what it is we are updating that's in your package. They are both thanks to Dan's input here. We have a one page, this bibliography that at Dan's suggestion, we're going to start to build. I do go ahead and enter the new one on it. So that will be brought to you.
Then also based on his suggestion, we have added extra items to the outline that you have under the population health record section. But that should stop -- you have that document. It says "Our National Health Information Infrastructure."
DR. LUMPKIN: Let's talk a little bit about the overall structure, and first say that we are essentially raising the fourth child. I don't know if anybody's been to a family with large kids, but the first child is the experiment. You don't have any experience to draw on, and that's where you usually make all of your mistakes; not necessarily, but sometimes.
The middle children, by then you've got some experience and you don't pay attention to them. But it's the last child coming down the pike that is really the one that you use all your experience and you realize, this is the last one and do your best job.
Well, our initiative here in the United States is that fourth child, because we can gain from experience from what has gone on in Canada, what has been going on in the United Kingdom, and in Australia. I think that our goal here is not to reinvent the wheel. There are a lot of pieces that are out there. There are pieces in the international community that are out there that we can borrow from and learn what they thought went well, what didn't go well.
And there are a lot of pieces within the nation of the infrastructure. The GCPR project is an example. That other pieces where a lot of the standards that we want to look at, that will make up the technology, the standards of the health information infrastructure are there. So our goal is to first put those pieces that we have, identify what they are, begin to put them into an overall structure.
Then the follow-up to that is in once we have done that, we can identify the gaps, because there are clearly going to be areas where standards don't fit, where pieces don't connect with each other.
I do want to make one overall comment, and that is that we have to be very careful. Our goal is not to create a national database. We need to say that every time. We are not trying to create a national database, nor a national data warehouse. But we are creating the enabling technologies so that when the disparate pieces of health information need to be put together, they can be, to benefit the patient.
DR. MAYES: Can I make one comment, John? I think particularly as you examine what has gone on say for the UK or other countries at a national level, we have sometimes a tendency to focus on the product, the particular standard or technology. I think it would be most important for us also to get information and focus on the process. It's very hard to do things on a national level, or even at a state level. You can't just adopt a product, because most of these products actually are the result of a well defined process of development, because they are all at this level very much consensus-based, very conceptual.
So I would urge us to not just sort of pick the pieces and put them together and say, well, here it is. We can buy it. It's off the shelf. But to understand that what we need to get in place is a process that is dynamic, that is alive, that actually continuously responds both to the commonalities, as well as to the individual differences that are going to happen between different countries, and between the states and things within the US.
DR. STARFIELD: John, I think it would be useful to put what you just said into writing. Do we have that in writing anyplace?
DR. DEERING: The concept paper stated that explicitly.
DR. STARFIELD: In his words?
MR. BLAIR: We can put it into a tablet and have that on the wall.
DR. STARFIELD: I think it's useful -- this may not be the time to take it up -- but we defined population in this set of slides here. But in fact some of the examples don't go along with that definition. That came up yesterday in the discussion of whether Medicare population was a population. John Lass defines it geographically, and yet in the examples Medicare is not geographic. We may have to struggle with that at some point.
DR. LUMPKIN: While we're waiting for the outline to get together, let's spend a little bit of time talking about the process. Maybe the best way to identify the process is to spend some time saying if we were able to set up the table to get this concept adopted, who ought to be at that table? If we can identify the kinds of players and the players, perhaps that will help us shape the process that we need to have.
Obviously, some of the tools that we have in our armamentarium are hearings. I'm not sure hearings are iterative enough, interactive enough to do this. But perhaps we may want to look at workshops, consensus conferences, those kinds of things to be begin to put these kinds of pieces together where we can actually bring those folks to the table.
I like blackboards. We happen to have one in this room. It's one of the few times we're in a room with a blackboard, so maybe I will get up there. Let's start brainstorming, so just anybody.
DR. MAYES: I think you need to define the product fairly well. National health information infrastructure is way too broad. If you can define some specific products and work out a good process for achieving those products, I think we will find that there is actually a great deal of similarity in that process. But having a specific product to focus on will make it a lot easier to actually develop a usable process.
DR. FITZMAURICE: John, I would go in a different direction. I would say we need to have some overarching goal like using health information technology to improve quality of care and monitoring of public health. Some overall goal so then you get down to how do you do it through connectivity, through uniformity. Then we get the specific products. We need to look at where we are going.
DR. LUMPKIN: Let's start out from square one, because we do have our document, which hopefully everyone read, which sort of describes what we want to come up with. So the goal really --
MR. BLAIR: Can I ask a question?
DR. LUMPKIN: Sure.
MR. BLAIR: Bob, you had said that we needed to define what it is, the health care information infrastructure.
DR. MAYES: It's a lot of things.
MR. BLAIR: It's a lot of things. Now are you saying that because you felt that the document didn't give us --
DR. MAYES: No, I'm just saying that within the large goal -- and I'm not in disagreement with Mike at all. But ultimately you want to produce something that is real.
MR. BLAIR: My thought was that if the document does at least describe what we are talking about with the health care information infrastructure, and what its objectives are, and at least some of its general maybe artificial divisions into patient records, population records and consumer records. We may modify that as we go along. But anyway it at least gives us some way of saying this is multifaceted.
If it is not a matter of doing that, then my inclination would be to say if we start with that, rather than revisiting that, what John was about to do here was to wind up given that as our starting point, do we have everyone at the table to help us go through the process of taking this further? At least that was my understanding. Is that correct, or am I still missing something that both of you were trying to get to?
DR. MAYES: I'm just looking at the outline here. There is actually a section called the product, the national health information infrastructure. Under that are both some goal type of statements -- what are we creating, the uses. But there are also some very specific products, that I would consider specific products, the standardized lexicon. A minimum data set question mark. I would put in a national health information model. There are other things you can do.
If you are actually wanting to get to a point where you are going to do something that is specific like that, not a general discussion of a national health infrastructure, that's going to be somewhat of a different process than a discussion developing national priorities and goals. To develop a standard lexicon, you've got to get deeper in there and say well, what we want to come out with is this at the end, and here are the kinds of people that need to be involved in the process.
DR. FITZMAURICE: My contribution was to not forget our grounding, so that we know that we're going in the direction that we want to go with these specific products. I think the paper is a good grounding point for us. I didn't have the benefit of the paperwork that was just passed out, but I think that there are a lot of good things on if we want to get into specific products.
DR. LUMPKIN: So let's talk about the product section, and then we'll go from that to develop the process. Again, what we wanted to do was remember that we want to try to keep this at a high level so that when we talk about a national information data structure, we're not necessarily going to describe that data structure. But our goal then would be if we have this as part of our conceptual model, part of the process we are going to talk about is how that will occur.
And a big chunk of that has already been done through the HIPAA transactions and other things, where there have been some clear definitions defined. There are standards development organizations that are hard at work, the HL7 and so forth. So they are going to define a whole piece of that.
Because we have an overarching perspective to not only look at health care, but health in the broader sense, the interactions of people with their environment, there are going to be some holes there. That's where we may want to focus attention. I would see the endproduct of this initial working group is to identify where the holes are, and say this is what needs to be done. Then there would be the implementation phase, which is to get that stuff done.
DR. FRIEDMAN: I think that probably most of us, if not all of us could agree on the specific products. And I think focusing on the process to get to these products makes sense. And at the same time, I think in some ways we could agree on the need for these specific products, and still have some pretty basic agreement on the super structure around the products.
I think that the concept paper sort of started to lay out that super structure, but we really danced around a lot of things. You can read that concept paper and find it interesting, and at the same time I think not come away from it with a real notion of what's this thing look like.
I think somehow or another we need to -- obviously, we need to focus on these products, but I think we also need to invest the energy, which I think in some cases might be somewhat -- the energy, and at times sort of the unpleasant interactions in trying to get some more input and give some more thought to the super structure, and what we want the super structure to look like. I think that the disagreements and the public disagreements are more likely to come around the super structure than around the specific products.
DR. LUMPKIN: And I don't disagree. I think the point where I'm trying to get with Bob's excellent suggestion is that when we ultimately come out with this paper, hopefully -- and we're shooting for June of next year -- that our goal would be not, well, here it is. Tear it apart. But there are already people on board saying yes, this is really great.
So we have had some interaction. And that's really the process that I think we want to get to today of who are the players that we want to involve in helping us shape this so that we can perhaps invest some of those issues before the paper even gets released.
DR. STARFIELD: I think that's what I wanted to comment on. I think we need to have a few words or a few sentences that deals with what the product has to address. I want to make sure that we all agreed on that. In just my own words, it's the information structure regarding population health needs, their distribution and determinants, and approaches to dealing with them. I would like to see that discussed, because I want to make sure we understand what it is that we are after.
DR. DEERING: So you would define it solely as population and health needs?
DR. STARFIELD: Well, I said the distribution. So it's not only the whole population, it's problems of distribution.
DR. LUMPKIN: But it isn't just needs. It's also status.
DR. STARFIELD: Well, that's a need. Health status is a need.
DR. LUMPKIN: Health needs --
DR. STARFIELD: The problem with using status is you don't have distribution of a status, or determinants of a status, although I suppose you could.
DR. LUMPKIN: Actually, I'm looking for a more inclusive word, because health needs doesn't get to it.
DR. STARFIELD: How about population health, its distribution and determinants?
DR. FITZMAURICE: The next higher level would be population well being, which gets at health, but also living environment.
DR. LUMPKIN: I'm just kind of thinking as I deal with our bureau of the budget and other folks, that there are certain buzz words that don't necessarily play well. I think health plays well. Well being begins to go a little bit too far.
DR. MAYES: What are those buzz words?
DR. LUMPKIN: I think that regarding population health, I almost might flip those two words, health for population.
DR. STARFIELD: Its distribution and determinants.
MR. BLAIR: I'm tending to thing of this, and I'm bridging off a little bit of what you said about products, but in my mind I'm not using the word products and needs. What I'm thinking of is we're talking about a national health care information infrastructure. So at least in my mind I'm tending to organize things in terms of what is that infrastructure.
I don't know if this is useful. After I lay this out, you tell me whether you think makes sense as a framework or not. The easiest thing for us to articulate when we talk about an infrastructure is like an information technology infrastructure, which has to do with standards and communications. That was the first one. That's just the most obvious.
But the second one is the legal infrastructure, like protecting privacy and confidentiality, and winding up making sure state and federal laws are all consistent with supporting the infrastructure and the change.
There is a third area that we implicitly I think consider, although we haven't defined it here, which is the patient care infrastructure, and providing enough care.
Then there is in my mind a fourth one, which is I'm going to call it a research infrastructure, because part of the research infrastructure is public health research, and part of it is clinical research, but it draws upon the infrastructure.
And then there is another one that we seem to have added, which is a -- and this may not be the right phrase -- but a consumer health information or public health information that we're beginning to see evolve over the Websites. Then that is five.
Then the last one in terms of an infrastructure is one that -- and again, it's so nice that you folks have joined us -- would be the financial infrastructure. How does this get financed, the infrastructure get financed on a continuing basis?
And maybe there might be one more, which might be and I'm not sure of this, but some type of an overarching framework which might be a policy --
DR. MAYES: There needs to be a socio-political --
MR. BLAIR: Infrastructure to tie these together, to move that forward.
DR. MAYES: So that's the process part.
MR. BLAIR: Yes. Is this useful?
DR. LUMPKIN: That is. I think we are kind of putting different pieces. Let me toss out something that struck me as you were talking. We're almost going to be describing a three dimensional thing that we're trying to get to. One axis has three components, data, information, and knowledge. Because our infrastructure will need to enable the transfer of data, lab results, clinical observations, information, which may be diagnoses, and the knowledge, which is how to make those diagnoses so that that's where decisional support comes in, knowledge transfer. How the public accesses information.
Because there are not only people -- when we talk about this health information infrastructure, it's not only about clinical data, and it's not only about environmental data, it's also how the public accesses their own health information, and how they access information about health problems. Because we can't exclude that piece.
So we think about the three parts of that cube, I think they are going to be data transfer, information transfer, and knowledge transfer. Then we need to think about the other dimensions of that. That will then describe distinct blocks. Because obvious information transfer, there is a lot of work going on with the National Library of Medicine, where they may want to help us with some of those ideas about how to get this access to the public, access to the health professionals, access to organizations.
DR. STARFIELD: What were the other axes? You didn't give us the other axes.
DR. LUMPKIN: Hey, I started with one.
DR. MAYES: There is something called the Zacton(?) framework, which is not health care-specific at all, but which is in fact a framework model which is describing in the generic, exactly the approach you are taking, John. It allows you to move or understand the relationships of the specific within the context of the more general.
It does call them data, information, and knowledge, but it focuses on the fact that there is actually technology, there is need if you will, whatever. That would be useful. Maybe we can share that. I think there are some people who know of it. It's an information and knowledge management circle. It's one of the early works, one of the sort of seminal work in that area of defining.
That's the other point we should probably be aware of is that although we are focused on health care here, these issues are by no means unique to health care. And there is quite a bit of work done in knowledge management, which would be very, very informative.
DR. STARFIELD: I don't think we are focused on health care.
DR. MAYES: That's sort of the health point of view.
DR. LUMPKIN: He's working at HCFA. He forgets his roots. So drops in that health care term, when really he means health.
DR. DEERING: I wanted to mention another possible axis which is an audience axis or a user axis. Because I think remembering what we decided we're trying to produce is let's face it, it's not so much a technical operational document that we're trying to produce. It really is a communication document. It's a conceptual communication planning for the future document, in which case it's always good to frame it in terms of all those people who you want to buy into it. So I think if you can display that in some way, that it might make it useful.
MS. HAYDOCK: The third axis could be use. It could be type of information, not so much use, but type of information, be it well being, be it environment, be it treatment, outcomes or whatever. Actually, I thought where you were going Mary Jo was to talk about the individual, the patient, and the population, which was another way we were dividing information.
DR. DEERING: I had suggested audiences for the second axis. But if you say patient, consumer --
MS. HAYDOCK: Oh, and population. That is content.
DR. LUMPKIN: And you were going to look at Zacton.
MS. HAYDOCK: I could bring that in. That actually might help us. It is a way of looking at a complex problem set, and breaking it into smaller pieces from a very high contextual level, very high level of abstraction, to a very detailed level on a vertical axis, and across a horizontal axis, asking a bunch of interrogatories that take you from very physical things to very sort of the how, why, when, who types of questions that get into all the sociological issues.
DR. MAYES: I think it would be very useful in that what it does is allow you connect this strategic document that I was talking about, and identify particular tactical activities that we would undertake to actually achieve that vision.
MS. HAYDOCK: Yes, you're right.
DR. MAYES: It's not a cube like this.
DR. LUMPKIN: Kind of what I'm hearing, and let me just sort of toss this out. Again, we're kind of putting some pieces together. Is what, who accesses, and the units of measurement. That's where we get to individual population.
DR. MAYES: Or what, who, and why. The why gets back to your earlier conversation of are we talking about well being? Are we talking about health care provision? There are different reasons for accessing the what. Different people have different reasons for asking the questions.
DR. FRIEDMAN: I actually agree with Bob, and I think starting, whether it's a cube or whatever, I do think returning to this touchstone of the consumer, the patient, the population record helps to make it somewhat more understandable. I think within that, I think that always returning -- it's not self-evident -- is really is crucial. Because I think essentially if we are going to get anybody interested into buying in, we really need to be as clear as we can about the --
DR. LUMPKIN: So we could conceptually talk about this as being the why. And let's say initially it is prevention, care -- well, primary, secondary, tertiary prevention. For those of you who don't come from the public health model, let me explain that. Primary prevention in the infectious disease model is you keep people from getting measles. And you do that with immunization. Secondary prevention is if someone has tuberculosis, you want to treat them early, so you minimize the damage to the organism. Tertiary prevention is once the damage has occurred, you minimize the disability as a result of that damage.
So that's just one model, but it's kind of the prevention model, which really goes across all the spheres of what we do in health. So the why, and we can play that, there can be additional whys, but the who would be the kinds of people accessing. Then the what -- now the what, the axis will have different dimensions. That may be why we would subsegment the what into the population base, the individual base.
DR. MAYES: I think that's the who that Mary Jo and Sandy have talked about, this sort of spectrum of whos on the grossest level goes from individual to population, and you can sort of tease it apart that way.
DR. DEERING: But then doesn't the who accesses, leaves out the policymakers and the researchers?
DR. MAYES: I'm not talking about who is accessing. I'm just talking about there are different whos.
DR. DEERING: I only wanted to just pick up on your prevention work here because to also note that the second of the secretary's cross-cutting themes is prevention in 2001.
DR. KOLODNER: While we are talking prevention, I think the other part is because we are in health and not health care, the health promotion, the positive side, rather than the negative side would be very important to make sure we capture.
DR. FRIEDMAN: That's exactly what I was thinking. It would be nice to wrap the primary, secondary, and tertiary prevention into a more generic terminology, whether it is health or whether it's well being. Whether it's WHO, but something that is more --
DR. STARFIELD: You mean like promotion, protection?
DR. FRIEDMAN: Yes, something like that.
MR. CARLETON: I have observed that the type of information engineering work that we are talking about is both rock solid, has to be done, and it also is terrible at communicating visions to anybody else. It's a very small bit of the population that can read standards and these other things, and come away with an aspiring vision. You almost have to lay some kind of narrative scenario set on there, so that people can see themselves in this, and understand why it's a compelling vision, or alternatively, why the absence of it would be detrimental to them.
DR. LUMPKIN: If I can follow-up on that, because that really is important, particularly for the document. Because I think our document ought to -- let me give sort of an analogy. My brother is considering buying a new car. So I went to the Mercedes-Benz web page. You can click on there and they have a 360 degree view of the inside of the car or the outside of the car. There are people who look at a car from the inside, and there are people who look at it from the outside.
We ought to walk through in the paper a couple of scenarios about what the NHII means to you if you are a consumer, you are a policymaker, you are a provider, you are a public health person. Walk through a few scenarios so that they can see if from their perspective.
DR. MAYES: But that's the product. That's what I meant by identifying some specific product, because that makes these scenarios real. You say here is a product of interest to some chunk of that cube, and here is how we would get it within the context of the cube.
MR. BLAIR: I'm trying to visualize -- mentally I don't have any problem visualizing a cube and three dimensional object. And I started to take it to the next step, and I ran into a problem. I don't know whether we can reconcile this problem. If we can, then it gets it better. If we can't, then maybe we need a different way of conceptualizing it.
Here is where I am, and you tell me whether I'm in sync with the way you are thinking about it, because the three dimensions that we talked about, one in my mind when you said who, I thought of the users of the information, whether that is individuals or researchers or care givers whatever, the users of the information. I thought that's fine as an axis.
Another axis was why they were using, or what they were using the information for, and that was another axis. I thought that would work fine, no problem with that one. The area where I started to have difficulty -- at first I thought this would be fine -- was what information are they accessing, what data or knowledge about health are they accessing?
As I start to just mentally go through the process, it started to collapse on me, because it looked as if they were all basically accessing the same information. They were just either having to aggregate it differently, or look at it from a different perspective, or subset it or organize it differently.
And so that third axis in my mind, was starting to collapse. Now am I in sync with your thinking, or am I failing to understand how we could do this?
DR. MAYES: Jeff, what you have described is the building of a three dimensional analytic cube. You look and just to jump into information management sort of parlance, data warehousing and you build these kinds of cubes, you have two things. You have facts, the whats, and you have dimensions, which we have in turn defined as the who and the why type thing. You are absolutely correct, the what is in fact cords the same.
It's the who and the why that allow you to reconfigure. If you can well define the what and those who and why dimensions, you can build systems or infrastructure that allow you effectively and efficiently do that slicing and dicing from whatever perspective. That's really the goal. I think that if you can achieve an infrastructure that allows you to do that, you have reached where you really want to go with an information infrastructure.
MS. HSU: Another way of looking at this is I know in the beginning we talked a little bit about process, and Dan mentioned about what the stakeholders were. I know it's hard for us to come up with definite products that everybody will like and buy into. One suggestion is that if we talk about who the stakeholders are, and bring them in early, and have them be part of defining the product, that maybe they would buy into it, and they would feel ownership of this vision that we have.
Instead of having this defined set of products, this is what we want. But maybe if we talk about some of the processes and ways to get the stakeholders you wanted. Mary Jo and I were just at a developer's conference in interactive health communications, and the subject came up over and over that people wanted the government to set standards.
There were so many suggestions. We had stakeholders from the industry, venture capitalists, all the way up to developers and academics. Everyone just had a different piece of what they wanted the government to do. So I know our time is running low, and so I wanted to throw out that it would be a really good idea to have a Web forum, either a Website or some type of list serve that people could start throwing ideas.
I believe that a good place to start is I believe that we might want to do something like that with the group of -- we have about 140 people at our conference that came and started throwing out ideas. We might want to set up a list serve with them and build upon that or something.
DR. FRIEDMAN: I want to just briefly return to what Jeff said, because I think it's really important that we try to at least reach some clarity in our own minds about this. I agree with your question about the content. I think that ideally what we have laid out as consumer population and patient records ultimately come down to the same data, and are derived from the same data.
I think the distinctions among the three of them, among the three records are artificial, and at the same time, I think the distinctions are useful for our present purposes. I'm not sure how far we would want to push the point that the distinction among what we have laid out as those three types of records are ultimately artificial. Then we get into the dangerous ground of --
MR. BLAIR: Maybe we could say that in a sense the third one, instead of saying that the third axis is the data and knowledge, which would be pretty much the same from pretty much the same sources, if we said that that third axis was the views of data and access. And then that would proliferate and help expand it, because we would be able to say there is one which is aggregated in such and such a forum. There is another which might be direct soap notes, and history, and physicals and stuff like that, because it is for patient care.
So if we call it the views of data, then that might give us the axis that becomes useful in helping people understand how this all plays out. Does that make sense?
DR. FRIEDMAN: It makes sense to me.
DR. LUMPKIN: I've got a problem with that. The reason why I have a problem with that is that a lot of what we are struggling with, and a lot of what we are talking about, if you take information in the medical record and convert it into a diagnostic code, you are really taking data and converting it into information.
There is really a difference between those two. And once you take that information and say that if you have got the following data elements, if you've got a patient who has got a fever, they have got a pelvic mass, the fever continues to go up despite antibiotics, and you write in the chart discharge, there is nothing in the information in the data that helps you make that decision. But a knowledge management tool would say, doctor, did you notice it has met the following criteria, and maybe this patient shouldn't be discharged?
Now the patient could be terminal. They could have cancer and be terminal, and you say, no, this is appropriate. But that's the kind of decisional thing where you are sharing the knowledge of what the experts in the field are. In the dimensions, we need to make that knowledge available, but we also have to look at how that knowledge is generated from the data and the information. So that's the reason why for me, I see a need to give it that dimension.
DR. DEERING: I could just say also in my understanding of what you mean by knowledge, would be those pieces -- no, that's wrong. Those synthesized items like guidelines, again, which are not just agglomerations of data. There is knowledge out there that people want to access that you really can't say it's just an agglomeration of data. It comes from analysis and policies and everything like that.
So I think you get at it by saying even there is sort of an implied hierarchy, that it all feeds from data to knowledge. I think that allows us that. By keeping it like that, that allows us that extra dimension of non-quantified --
DR. LUMPKIN: There is human direction that has to occur to move through that hierarchy.
DR. MAYES: One way to look at it, you have data. Information is actually data in context. There are many contexts. All of us, if we are different health professionals, we can examine the exact same person and we would come up with different information, because I'm a nurse, he's a physician, whatever. So you have data. You have information, which is data in context.
Knowledge is what results from applying a specific set of rules to that information. And so medical knowledge is applying the rules that have been developed through the professional practice of medicine to information, which then allows you to make decisions or take action upon that type of thing. So they are definitely related.
They do start from the same Lego blocks, but you get wholly different structures out of that, depending on the context, and then depending on what set of rules you wish to apply to that particular context. So it fits really very nicely into this kind of cube type or multi-axial approach to this sort of thing.
DR. STARFIELD: We actually dealt with this in the 20th century vision. We had a couple of hours on these. There are actually more than three, but I don't know what they were. Do you remember, Dan? We might want to take that and feed it into this process.
MS. BAUR: I was just going to say that one of the ideas I keep coming back to as I listen to the discussion, the distinction that the medical anthropologist Arthur Klineman(?) makes between the formal and the informal sector in health care. And that it seems to that what we are talking about is the formal sector. Mary Jo and I have had some conversations about this.
I think the moral of the Web is that there is a very large amount of activity that falls into the informal sector, that is hard for health professionals to come to grips with sometimes. So that that may be one way in which the cube gets modified then, because there is a lot of activity that is happening in what could be called the informal health sector that may be parallel to what you are talking about here.
So that if you are trying to think about the kind of -- and I know that these distinctions among data, information, and knowledge are ones that may people like to think of. Another split might be in terms of actionable and non-actionable. The stuff that kind of sits there inert, and the kinds of things that motivate people to do things. And whether that is actually somebody seeking out information in what we would consider an authoritative source, or whether they are on some kind of chat group getting support from people who have been in the same situation they are.
So I guess my point here is that if we want to think seriously about the consumer perspective on this, I'm not sure that what we are modeling here is really getting at that yet.
DR. MAYES: That's just a different context. Context can be any number of things. A context can be whatever your world view is, your context. There is no limit to the contexts. That's the interesting thing about it.
MR. BLAIR: But when do you see it breaking down? You said it gets at the consumer piece. Could you give us an example?
MS. BAUR: Well, for example I was thinking about a presentation that I saw in which a medical informaticist was talking about organizational change. He was talking about system implementation. And he was saying that what he had come to was from the administrative perspective, that we he was dealing with all these cultures. He goes through and he says well, I'm dealing with the physician culture. I'm dealing with the IT culture. I'm dealing with this.
Then someone said, well, what about the consumer perspective? So it just added it to the list. But what I'm saying is that I think there may be things that are going on in which these different cultures or contexts -- and that might be another word for thinking about that -- that makes those different categories equivalent in a way that I'm arguing that perhaps there are things going on in the consumer sector, or things that are happening in what Clima called the informal sector, that are necessarily equivalent.
DR. MAYES: It doesn't imply equivalence.
DR. LUMPKIN: We take care of that on this axis, which we haven't developed much, which is who accesses. Who accesses the data. How do they get access to it, and who does it? And recognize that the view of the data and the information and the knowledge should be different depending upon who you are and why you are looking at it.
DR. MAYES: If we could define those in cultural terms if you want. Data, information, knowledge -- knowledge is actually a value set. Information could be a sociological structure or kinship structures. Data are just facts. It's the real world as it's perceived by the member of a particular culture or organization.
MS. BAUR: I guess what I'm saying is that what counts is facts for different groups.
DR. MAYES: Absolutely, facts are how you perceive the world.
DR. LUMPKIN: I'm going to disagree, because what you are talking about is information is different, because if someone is looking for information about lyme disease, and they are going to dispute, because they have been to a Web page that says lyme disease is really caused by gamma rays. And they find a Web page, and they believe that. They don't argue with whether or not lyme disease exists. There may be some that argue with whether or not lyme disease exists. That's a diagnostic, but that's an information piece.
But if they accept that. Then their question is how is that interpreted. Which interpretation do you accept? That really is where the informal culture goes, and how you interpret the data. Our challenge is to recognize that there are data facts that people may want to get access to. They may want to know what their cholesterol is. That's a number.
MR. BLAIR: Isn't interpretation beyond the role of the information infrastructure? The information infrastructure is to make sure the information is available to all people who want to use it, for whatever the want to use it for. And there may be imbedded in that a practice guideline for protocols and research findings. And I understand that.
But the example that you just gave, a consumer getting on and there is Website information. It may not even be consistent. It may be information in the information infrastructure may be not always be consistent, but that may be beyond the role of the infrastructure. That's how somebody uses the data.
DR. LUMPKIN: The problem is that we are not using unambiguous terms here, because the way you are using information, and we use that in the title even of this work group is not the same way that I'm using information when I talk about the hierarchy. What we need to understand, and maybe we need to come up with different lexicons so we can talk about this in unambiguous terms is that we have to recognize that human input, putting data into context creates a different kind of thing that has to be transmitted differently than the raw data itself.
Then applying the rules to that information and context creates a new kind of thing that has to be transmitted in different ways, because the social context of the individual, their whole life experience will determine whether or not they accept the context or the conclusions based upon the rules. You can't transmit that in just a simple way, the same way you would transmit a cholesterol level.
MS. BAUR: One of the things I think about is trying to always be as explicit as possible about the assumptions that you make in any model. So I think for example what you were saying about the condition with lyme disease, I think another example might be the difference between somebody, a medical professional or health professional diagnosing something as epilepsy, and someone else diagnosing it as evil spirits or the evil eye.
I mean that there are many possible ways in which you could identify something that is happening. But what I'm saying is that I think it would be difficult to say that you are going to be able to come up with databases or knowledge sources that would --
DR. MAYES: You are reading way too much into this. This actually goes to what Jeff is saying. This is strictly a model of an infrastructural approach. That axis that says data, information, and knowledge is not one dimensional. It's part of a large, multidimensional thing. So the data might in fact be the same. The fact that somebody falls on the ground and writhes and foams at the mouth is going to be observed, and there is probably going to be general agreement.
The context in which you put that observation, however, could vary quite a bit differently depending on your point of view, on your context. If in fact you live in a world that is directed by spirits, then you are going to approach that, that observation with that context. If you have gone to Harvard Medical School, you may approach it from a different context.
Then the knowledge that you gain from the rules that you apply then will also be very different. But there is nothing explicit in that model that wouldn't allow you to go both of those ways equally well.
DR. KOLONDER: The model is neutral.
MR. BLAIR: Let me go back to what John said at the beginning. The purpose of the information infrastructure is to be an enabler for that are giving care, those that are seeking information, and those are that are doing research. It just enables them to do their job quicker and faster and easier.
DR. STARFIELD: Two things. First of all, I'm little uncomfortable with all the examples that are given, because they are awfully clinical and biomedical models, and I don't want that to constrain us. That's just a comment.
The second thing is I think what is missing, now that if you buy what we said before about what kinds of information we need, what was missing from that was what the purpose was. And I think the purpose is develop health policy through informed public opinion on professional practice. We need to have a purpose for doing what we are doing. I think that's maybe that third dimension.
MR. BLAIR: You really got me there, Barbara.
DR. STARFIELD: Good.
MR. BLAIR: Are you saying the information infrastructure is to be used for developing public policy? I mean that may be one of the uses of it per se, but is that the primary use of the information infrastructure?
DR. STARFIELD: Why are we doing all this if it's not for policy considering public opinion and professional practice? Why are we doing it?
MR. BLAIR: At least in my mind that's one of very many ways that it could be used, but in my mind -- maybe I'm wrong --
DR. STARFIELD: I didn't say public policy, and I don't necessarily mean public policy. I said health policy, but I think policy is --
DR. LUMPKIN: But I would think that we talked about primary, secondary, and tertiary prevention.
DR. STARFIELD: But that's not enough.
DR. LUMPKIN: That may not be enough in that when we talk about the why, we may need -- this dimension of why needs to be expanded, because there are things that people look at in this one dimension. There are different people who will look at stuff, and what they look at still kind of is defined. Why do they look at it? Well, there will be researchers who will look at it, because there are questions that they want answered, and it may fall within the domains of primary, secondary, tertiary prevention.
There may be people looking at it for policy reasons, which could be anywhere within those three areas.
DR. STARFIELD: But research is related to policy. It's not distinct.
DR. LUMPKIN: But there are also consumers that are going to use it, and those are the who, but not the why. They may look at it for different purposes.
DR. FRIEDMAN: I'm getting confused between the who and the why. And it seems to be me that at the most general level, whether it's the who or the why, the purpose is improving population health. At a more specific level it's improving health, i.e., both health care in a generalized way, as well as individual patient decisions. And at an individual level it's basically decisions about actions that an individual should take to improve her or his own health.
DR. MAYES: The problem is we all have multiple roles in our lives. Just in our health care model I could be a patient. I'm a member of a population. I'm a provider and things like that.
DR. FRIEDMAN: They are not meant to be mutually exclusive.
DR. MAYES: No, they are not. That's the point.
DR. FRIEDMAN: But I think somehow or another we need to be able to come up with something that somebody who is not sitting here can essentially put their hands on.
DR. STARFIELD: Instead of policy let's say decisions.
DR. STEINDEL: Can I offer a statement for discussion. It's just saying that the purpose of the national health information infrastructure is to enable its users to make informed health care decisions.
DR. FRIEDMAN: It's too specific from where I stand.
DR. STEINDEL: I'm throwing it out for discussion, because we need to synthesize what we mean by these axes. We actually looked at these axes once before in another meeting when DOD presented a three dimensional cube for us as their model. Our discussion digressed the same way that this discussion is digressing, what is the nature of the axes. Every time we put a label on the axes, all the sudden we saw the other axes shift in relation to what we were talking about with that axis.
So there is, as Jeff said earlier, there are views. How we look at the data is how we interpret what role we are taking. With looking at the model is how we look at each one of the different axes. We have heard that expressed multiple times this morning.
So I think we need to synthesize an overall view of the whole model so we can shift our roles accordingly, and look at it in different ways. That's why I threw open a little bit broad definition for discussion, because I realize that it's very broad.
DR. LUMPKIN: Well, actually to my mind it was too narrow; the health care part.
DR. STEINDEL: I had problems with those words too. I jotted that down in two seconds.
DR. LUMPKIN: Health decisions.
DR. DEERING: Can we vote on decisions? Let's do it one word at a time.
DR. LUMPKIN: Actually, I was thinking about decisions, and just leaving it there, because we are describing a national health information infrastructure. We are talking about decisions. Now some decisions may be budgetary. Some of them may be clinical. Some of them may be policy. Some of them may be environment, but the tying thing is health.
DR. DEERING: So they are decisions that impact health?
DR. LUMPKIN: Health decisions.
DR. STARFIELD: No, they are decisions. They are not health decisions.
DR. LUMPKIN: So it would be redundant to say national health information infrastructure facilitates all of the decision-making.
DR. MAYES: Now that we are moving towards at least some sort of consensus on a very generalized model, I would only throw out to go back to what I think, if you want this to have really any meaning in the real world, you will then take certain slices of this multidimensional object, whether it be a cube or other, and follow them right down to the real world. That goes back to the product I was talking about.
And it would be useful to take perhaps several very distinct or divergent types of views that you could create using this model, and sort of show how in fact by taking this kind of approach that you are actually supporting what may on the surface looking like, gosh, a Native American wanting to ask questions or examine something about a particular traditional healing ceremony, and the Office of Management and Budget at the federal level wanting to make some sort of policy or management budget decision.
If we can actually define some very specific examples ultimately and carry them through in the context of the broader model, that will be very good. Because by itself, it is everything to anybody.
DR. FRIEDMAN: This may be a linguistic problem, but it's also a conceptual issue I have, including with the Australian model. In my model there is a distinction between having a model on the one hand, and on the other hand describing a health information infrastructure.
DR. MAYES: Yes, that's right. I think we are saying the same thing. I think you are actually rephrasing my concern, which is we need the model, but we need to make people understand that there is actually a connection in this. That conceptually you can conceive of this as a whole or something, but you do actually have to begin to describe the actual, the real, if you will.
DR. FRIEDMAN: What does this architecture look like? What's the building?
MR. BLAIR: I think the benefit of the cube is a tool that helps us as we begin to try to articulate and promote the development of the national health care information architecture, because it will help us identify those areas that either the government or the private sector right now is not adequately developing or serving, that needs to be somehow addressed by public policy to be able to complete the infrastructure.
A la for example, as you start to build that cube, and you start to fill in who is going to use it, and why they are using it, what data is available, you will probably wind up seeing disconnections or discontinuities or incompatibilities. As you begin to wind up seeing that, then those are the areas that we need to target for public policy, to be able to make sure they are being addressed so that the infrastructure will complete. Yes, no?
Again, I can't see your faces, so I don't know if --
DR. DEERING: That gets back to Barbara's point about developing policy broadly.
MR. BLAIR: Is that what you were trying to say about public policy?
DR. STARFIELD: Right.
MR. BLAIR: Okay, I finally caught up to you.
DR. LUMPKIN: Let me just sort of toss out a couple of ways we can look at this cube, and sort of say why for me it begins to get at some of the issues. Let's suppose that you are a physician who has a child in front of you, and you want to know whether or not to give them an immunization.
At the data level, you may to just access the immunization records. At the knowledge level, you want to know what shot this kid needs. So those would be two different cubes. One would be where you may have an HL7 standard for transmission of immunization records such as we're doing with registries.
The other would be applying rules such as the ACIP, which is a committee on immunization practices -- I forget what it stands for. But anyway, their rules tell you whether or not that could be applied to the data that you have in saying whether or not to give that child a vaccine.
So as we begin to put in there in this cube, we can look at some of the pieces. Some of the pieces will be filled in by HIPAA, but other pieces will be completely empty. Part of the goal of our effort would be to identify the gaps, and see where we need to have information or standards and communication standards established, so that that would allow us to have that information available at the point of service or evaluation.
DR. FRIEDMAN: Using the same example as the immunization record, the same immunization record can be aggregated to a population immunization record used by the US health officer. It can also be accessed by the consumer as it were, to find out if her three year old needs a shot. And I think that that's the reason why this model is going to be a little bit cludgy, because we are really talking about more than three dimensions.
DR. STARFIELD: It's too cludgy. That's what I wanted to say. We really have two cubes, I think. The first cube is the health needs, whatever it is, however you want to define it, the distribution and the determinants. The second cube is data, information, knowledge, and patients, consumers, population, professional policymakers, or however we want. I don't think we can do it with one cube.
DR. DEERING: What was your first cube?
DR. STARFIELD: The first cube was what we said earlier, the health needs, distribution and determinants. And approaches is a determinant.
MR. BLAIR: Help me understand what you mean by determinants.
DR. STARFIELD: What causes a health need in the context of the distribution.
DR. LUMPKIN: If I can make the suggestion that I think we kind of beat this cube to death. But what we can say is that this thing has certain dimensions. One of the dimensions is data, information, and knowledge. One of the dimensions relates to why people are accessing it. One of the dimensions relates to who is accessing information. Another dimension relates to perhaps the degree of aggregation. We can come up with some of the other things. And just say that it's going to have alternate dimensions.
DR. STARFIELD: We can't specify the categories yet.
DR. LUMPKIN: But that's our task between now and next year, is to try to come up with those categories. And this will describe and then lead to identify clearly areas where -- the piece, and Jeff talked about it earlier, is that what pulls it all together, because we are just kind of describing that, is that if we are going to be able to use this, what we are talking about are standards and communication capabilities.
It's not just about how the data sits, or the information sits. It's really about enabling it to go into motion, because it's not useful if it just sits in one place on a piece of paper.
MS. HSU: Which makes me ask, who is going to be the audience of this paper?
DR. STARFIELD: That's one of the dimensions. I think it's the who dimension.
DR. LUMPKIN: I think the who dimension is different than who the audience is.
DR. STARFIELD: It's the unit of analysis.
DR. LUMPKIN: Because there are a lot of consumers who will be part of this who, who aren't going to be the audience for this paper. That gets to how we get started on this, which is who should be at the table.
DR. STARFIELD: What table? This table?
DR. LUMPKIN: The process table. In other words, when we write the paper, the goal is to generate action. And we just don't want to identify that there is an outbreak of cholera. We want to stop it. In this case we want to enable something to happen. That means it's going to have to be accepted by certain key audiences. And we need to identify who those audiences are who have a stake in this kind of structure.
Then once we identify the key audiences, then we can identify the key players. So the who is at the table would be the key players within the audiences. And the audiences are who the paper should be written for. So for the vendors, we may want to identify three or four different vendors who we think would be key players, that we want them to participate in the process. But the paper has to be written, or at least part of it, so it will speak to those vendors, that you yes, when I start writing new stuff, I want to incorporate as much as the infrastructure is possible and meets the new iteration.
MS. HSU: The way the information is presented is very important, depending on who the stakeholders are, because this may apply for very academic people, but it's not going to speak to the people who are developing the structure. I just want to keep that in mind.
DR. KOLONDER: I think that's Bob's point. You get it together, and then you communicate what you have put together differently, depending on the audiences.
DR. STARFIELD: I still don't understand why that is different from the who dimension. I understand that the who dimension is the unit of analysis of the data, information, and knowledge. I think that's right.
DR. DEERING: In terms of the user.
DR. STARFIELD: It's the user, but isn't that the same as the stakeholder?
DR. DEERING: I think there probably is a lot of overlap, and I'll bet we could go down the list and probably check them off. We know it's providers. We know it is purchasers. We know it's vendors. We know it's consumers. I suspect it's the usual suspects.
DR. LUMPKIN: It may be, but I don't think that as we look at the audience for this paper, it is not going to be consumers. It may be some consumer groups or representatives, but it's not going to be the person who is looking on the Web page to find out whether or not their community is at risk.
DR. STARFIELD: Presumably the consumer group represents consumers, their interests.
MR. BLAIR: The ultimate office for this may end up being Congress, because that's where the funding and widespread political support to go forward with this might be. There are a lot of other people also, the administration, and special interest groups and all, but ultimately that may be who has to buy into this so we have widespread public support to go forward.
DR. FRIEDMAN: Jeff, I think that ultimately that is the audience. And at the same time what I'm wondering is if perhaps we should think of ourselves as delivering it to an intermediate audience, which could then develop another product. So for example the Advisory Council on Health Infrastructure, which was extraordinarily successful in generating hundreds of millions of dollars in federal allotments for health infrastructure, not only did they consult with a broad-based group, but the advisory council was more broad-based and more political in a sense than NCVHS.
I'm not sure that we can come up with a product that is going to move us that far. We may be able to come up with a preliminary product.
MR. BLAIR: Yes, that's the process. And the other piece is that maybe the paper is a vehicle for us to build consensus so that as this goes through the different agencies within the federal government, it then builds consensus, as we bring it to the states, it builds consensus. As we bring it to consumer groups, it helps build consensus so that when it finally does get to Congress, there is broad support for it.
Because otherwise there are a lot of things here, that if people are not aware of what we are doing, they could perceive it as a threat. And we have already seen that happen once to us. And that's the other reason why I felt it so important, as John was indicating, that we have to stay very focused on the fact that this is an infrastructure that is enabling health decisions, and it isn't a database, and it isn't saying everybody has to use patient records, and it isn't winding up saying anything else. It's an infrastructure.
DR. KOLONDER: I know we either ran out of time or are running out of time, but rather than focusing on Congress, I think if we look at that we are setting in motion a process, and we don't know just how that process is going to come about. The Internet, as I understand it, didn't come about because Congress passed a law and saw that it needed it. It was that a federal agency had a mission and did some things that it needed to meets mission, so it was federal money.
And it got the process started. That same thing may be happening already, or it may need to happen, or it may be a public/private kind of process. But the idea of looking through Congress as they have to do something, especially as productive as Congress sometimes is on controversial issues.
I think what we are trying to do, I think the idea of creating a consensus document, or opening up a discussion among all sorts of different entities who may play a part is probably the best. At least from my point of view it kind of captures it the best, rather than thinking that any one group entity or something is the key to making it happen.
DR. LUMPKIN: I think in a way we need to visualize this as being the junior partner in an advertising firm. We have pitched an idea. People said run with it. Now we need to put some flesh on it. Then once we've got some flesh on it, we need to figure out how to pitch it to the public and the various publics.
But our first task is to put enough flesh on there so that we can actually tell people what it is that we want them to buy into. What it is that we want them to finance the development of. What it is that we want them to participate in the national advisory committee on that will then play the role that they did in Canada.
So we need to get to that point. I think that's the point at which we are going to. And so the concept is that when we talk about people at the table, it will be the kinds of folks who we have to select very carefully, because that may not be the point to bring the consumer groups in. Where the next step after this is once we've got the concept together, we build the business case.
And building a business case of why this is a good idea, and looking at maybe the potential pitfalls and so forth, and what are the concerns about this may be the next step, the second part of our process. And then the third part is obviously getting this funded and adopted.
MS. HSU: Just to add to it, I just want us to not forget that Consumer Reports is a big enabler. It's a big strong person. Not to include them at the end, but make sure we include them from the beginning. If you look at alternative medicine, they are ones that are really pushing for it to be included. They are the ones applying the pressure, for example on the insurance companies to pay for alternative medicine.
DR. DEERING: Well, also because it is patient-driven care, it is also one way to avoid that brick wall that we ran into earlier. So that if it is pitched from the very beginning as patient/consumer enabler, then you may get not only the public buy in early on, but it might actually, we hope, strike an echo among health care providers. According to Regina Hertzinger(?) this is supposed to be becoming the next service oriented sector of the economy.
MS. HSU; The last thing I wanted to say is if the consumers are going to be using whatever products we are suggesting here, then it's important to have the users design what they are going to be using.
DR. LUMPKIN: Again, we're a long way from designing anything.
MS. HSU: I understand that.
DR. LUMPKIN: We're really looking at the enabling standards and technology for these things to be designed.
DR. STARFIELD: John, we need a process to carry this on.
DR. LUMPKIN: I'm getting to that. The reason why I wrote down information-oriented consumer on the board is because our task was to come up with a list of people who we think need to be involved between now and when we finish the first document. And through the discussion that we had about consumers, it is clear to me that the kind of consumer that we need is if there are representative consumers that demand that their doctor e-mail, that's the kind of person we need. So that's the first entry on the board. We don't have time to put the rest of the entries on the board. So I'm going to give you all some homework.
DR. STARFIELD: Maybe there are a whole bunch of consumers who don't believe in this. So you can't only use the --
DR. LUMPKIN: Right, but they are not going to help us put the flesh on the bones. If they come in and say we don't want information evolved at all.
DR. STARFIELD: They don't trust it.
DR. LUMPKIN: And that's fine. That will not help us put the flesh on the bones if we spend all of our time arguing whether or not we should even do it. So we need to have people in the room who agree that we need to do something, and then try to make a business case after that.
DR. KOLONDER: Don't consumer information-oriented with technology-oriented. There may be nontechnology-oriented, information-oriented individuals who, instead of coming up with a standard, a PC and Web access can come up with other things like phone access and other kinds of stuff. So information is information, not technology. The technology just happens to be the particular form that it would take.
DR. LUMPKIN: A national information infrastructure doesn't mean you have to access it by computer. So what I'm going to ask you all to do is over the next week or so, to put down some ideas, send it in an e-mail to Mary Jo. Then we are probably going to need to move this process on. We'll do it by conference call I guess, probably about once a month, to get this process going.
MR. BLAIR: The ideas that you want are the stakeholders that would sit at the table?
DR. LUMPKIN: To help us put the flesh on the bones of this process, either through some consensus conference, maybe in the winter or somewhere around that time frame. So that will be the homework, and then we'll try to schedule a conference call in about a month to follow this up.
DR. DEERING: One of the other things I wanted to say is Marjorie kept hinting that maybe we could actually get funds to help support this effort. I think clearly the priority is to push hard to take her up. I have one or two possibilities, but I can't guarantee that they would be the right ones or not.
DR. LUMPKIN: For those of you who are in the room but are not on the work group, if you would like to participate in the conference call, because this is a public committee, let Mary Jo know. We may want to explore something like a list serve or something for discussion.
[Whereupon, the meeting was adjourned at 9:45 a.m.]