National Committee on Vital and Health Statistics
Ad Hoc Meeting
on the
National Health Information Infrastructure
12.30 p.m.
September 27-28, 1999
Hubert H. Humphrey Building
Washington, D.C.
PARTICIPANTS
- John Lumpkin
- Richard Harding
- Barbara Starfield
- Jeff Blair
- Mazi Shirstoff
- Cynthia Bowers
- Mary Jo Deering
- Wayne Brandes
- Karen Trudell
- Marjorie Greenberg
- Sandy Haydock
- Steve Steindel
- Clement Joseph McDonald
CONTENTS
P R O C E E D I N G S
DR LUMPKIN: We are kind of doing an impromptu meeting here, just to go over some of the issues. It has been a fascinating process to watch. I think this has been a good example of how e-mail has worked. There are also some issues -- the piece that is kind of missing from e-mail is whether or not we are actually all in agreement or are just kind of going to rely on the last message that was sent. My goal today is to try to make sure that we are all on the same page on certain issues.
The issues that I want to get a feeling for, that we are all on the same page, is that we have kind of boiled it down to three things. I think we need to come to some agreement on what we are going to call these things. We euphemistically call them "views" and "cores" and "records" and other things, but we probably need to have some common terminology. We should go over the descriptions as we start to develop them, just to se if we are comfortable with some sort of standardized approach to those, and then some discussion about how they all fit together in the overall concept. Where do they fit within the context of the national data model, like they do in the diagram that they have in Australia, or something along those lines. Those were the issues that I thought we could address. Are there others that people thought would be useful?
Okay. Let's start off with these things. Conceptually, I think where we have gotten to is that the meta description of what we are attempting to do with the NASHA health information infrastructure is create a means by which people -- providers, the public health system -- can have access to appropriate information, and that information is best described by the thing, in that we see there is a view for an individual which describes what it is about my health that I need to know. Then there is a view for a provider, which is what do I need to know to care for this individual. Then the third view is, what does the public health system need to know about the community that is based on information that may exist in one or the other views, as well as additional information that will be collected about a community. So if you have data that is collected about lead levels in a community or average blood lead, that may not be identifiable or there may be no way to connect that with an individual. That may be a measurement that is made in the community about a person's home or their neighborhood. Those would be the kinds of things that would be uniquely collected in the population view or the population chord that would not be derived from the other one.
So these three things kind of intersect and there may be many common data elements. The personal view and the provider view -- the provider would have information that would be not a complete view of this person's health history. For instance, the internist who is taking care of a problem related to an ulcer in the leg that is not healing, it is important for that internist to know about the history of diabetes and maybe other events that have occurred to the individual, but not necessarily pertinent for them to know about an admission for psychiatric illness twenty years ago.
The individual, on the other hand, should have access to all that information and should be able to know what his immunization records are so that, if it has been ten years since the last tetanus, he ought to be able to generate a visit to the health care provider to be updated.
So that is my conceptual model of where these things interact and how they intersect. Having said that, and wanting to toss open the discussion to see if we are all in agreement, it suddenly dawned on me that there are people in this room that I think I have only communicated with by e-mail. So maybe we should start off with introductions, although this would be kind of unique because this would be mimicking our discussion if we did not.
(Introductions)
DR. LUMPKIN: Having tossed out the overarching conceptual model, do you think that is where were are? I see nothing but nodding heads. Then given that, what do we want to call these things? My druthers would be to not call them records, because for instance, the personal thing is more than just one individual record. It is really access to things that are maintained in multiple records. I think somewhere in this process, obviously when we start getting to work in Jeff's work group, these individual records may be created. But is it how those records then fill out this personal thing. So that is one of my biases against the term "record."
I am also biased against the term "view" because view usually is applied to looking at a database -- how do you view a database. We don't want to give the impression that we are proposing the creation of a centralized database. There are all sort of concerns about people having their health information in a database, and that is legitimate. We are really talking about the fact that, for instance, a personal chord may be best described as a meta database. The individual has the information that is keyed to them personally that tells where all their health information is, and when they want something, the meta database electronically tells whatever they are using to get access to it, how to find what it is they want to look at and then, based on security procedures, they would then get that information made accessible to them.
So that is really my bias on the term "view." So we are kind of left without a term.
DR. STARFIELD: How about "file?"
DR. LUMPKIN: File -- just jump in, please.
MR. STEINDEL: Since I proposed the word "view," I would like to say it means -- you first proposed the work "health chord" for this. I didn't like it, because it is a new word. But the more I thought about it, with regard to how you described the view and everything, I more agree that a new word might be appropriate, because we are thinking of a new concept. Record does not fit, file does not fit, view doesn't fit, because of the baggage those words carry, and not so much the inappropriateness of the words. But they do carry a lot of baggage. A new word might be appropriate.
MR. BLAIR: I am not entirely satisfied with this, but trying to step a little bit away from the word "view," because of your observation that there might be people who read this who will interpret this as some form of a national database, which it is not, I am not sure if the word "perspective" gets us far enough away. It is at least a little bit further away from the idea of a view of data. It is instead a viewpoint that the user has, as opposed to describing the use of it. If we were to look at perspective as representing the viewpoint, then the names we have picked, which is a personal perspective, caregiver perspective, and then a perspective of public health and clinical health researchers, then maybe that gets us away from being too techy.
MR. BRANDES: We have been struggling with this here, the staff also, in trying to find a way of looking at it that helps us understand it. One thing we have come up with is thinking about these views, as opposed to records, as being two separate things. The views are the parts of the NHII that are important to the various stakeholders. NHII has a very big thing that includes lots of things, but only some of those things would be important to clinicians. Some of those things would be important to individuals. So the parts that are important to an individual would be their view or perspective -- I think we also thought that was a very good term -- their perspective on the NHII.
The records we thought could be thought of as tools to manage the information that is in your perspective, what is important to your perspective on the NHII, but is not the NHII itself, or your view of it -- or will help you manage your view of it.
MS. DEERING: I would like to jump in and pick up on one item that I heard in John's comments -- a communication concern. That is why you don't like view. I think we are all very well aware of that. I would like to stick with that for a moment and say that, on one hand, you want a word that does not carry baggage unless it is comfortable baggage. So I think that if there were a way to come up with a term that was a familiar, friendly, okay term to all of the various users, then a new term would not be necessary.
Our struggle now is that we don't think we have found an old comfortable slipper term yet. But one thought that I am also hearing is a difference between the content, on one hand, which we agree is sort of overlapping in some senses, and then how the individual users, or these sets of users and groups, might either use it, view it, access it, et cetera. So I am wondering if there would be any benefit to going down that road a little bit and sticking with something like, on one hand, to just be very simple and taklk about, well, there is personal health information, there is population-based information, and there is provider and clinical information. That is what the content is and they overlap. Information is a nice simple, clear term that everybody knows and it can be in a lot of places.
I am still struggling for what the other thing is that is our value-added piece to it. But I am thinking of things more like interface or something that describes, again picking up on your concept, of how you access and knowing where it resides that is not in any one place. I am also struggling with what is coming out on the commercial web sites now where you customize your own web site. That is basically what they are doing, designing you your own interface, where you plug in exactly who you are and what you are and then it feeds the information to you, designed to your parameters. I am hearing from people that, in a way, that is sort of what we are talking about, too. So I thought of the term "interface," which I guess is a very unfriendly user term, but anyway to go for a mijute with this distinction between what is behind iot all and then how we get to it.
DR. LUMPKIN: I think that gets me closer to a point of comfort. Again, the problem I have with "perspective" is that NHII is an enabling technology. It is not something that we have a perspective on. It really is how we get what it is that we want in regards to our health information. So again if we are not conceptualizing NHII as a thing, itself, but as a way to get other things, then we have to be careful how we refer to what it is that we are doing. The NHII is actually the scope that we are looking through to get what we want.
MS. DEERING: I am only searching for terms that the users would find comfort in or the users would recognize, because I think that, again, another reason perhaps not to use the term "perspective" is that you would have to spend a lot of time educating people about what you meant by it. It is not an intuitive application of the term "perspective," I think, for a lot of people. I could be wrong and if I am that is fine, but the point I would make is that whatever terms we use should not set up a barrier. We should not have to spend some months or years educating people to this whole new concept that we are introducing because we would have wasted valuable time.
DR. STARFIELD: What is wrong with file?
DR. LUMPKIN: I think file has a technical meaning which denotes an electronically physical, a virtual collection of data.
DR. STARFIELD: That is not what is in your file drawer.
DR. LUMPKIN: Yes, what is in my file drawer, if you go to my file on automotive, is everything about cares that I have owned for the last fifteen years, because I hate to throw things away. So that connotes to me that somebody has that collected somewhere, everything about my -- it is kind of, you go to the bank and you are going to make an application, and somebody has your "file." That does not give a comfort that we want to achieve. This is not necessarily collecting data about people in a central location.
MR. BLAIR: My idea of a file is that it is a discreet entity and there are a lot of overlaps and different ways of looking at the information and looking at the information and using the information and different users of the information. So at least in my mind it begins to break the barriers of a discreet file. I like the word "information." I think that is a possibility.
MS. DEERING: The other thing that comes up -- and I am thinking again, picking up on what I am hearing -- is the term :organizer." My personal health information organizer, my population health organizer, my clinical health information organizer. Again, you are getting at the tool and the enabling function as opposed to an "it."
DR. STARFIELD: I like that because it gets at what I was trying to get at with file.
DR. LUMPKIN: Organizer -- I like that. Personal health organizer, a provider health organizer and a population-based organizer.
MR. STEINDEL: Information organizer?
DR. LUMPKIN: Information organizer.
MR. STEINDEL: I like health. It's shorter.
DR. LUMPKIN: Just health organizer.
MR. BLAIR: John, are you using the word provider instead of caregiver? What is your thinking on that?
DR. LUMPKIN: Not carefully choosing my terms.
DR. STARFIELD: Caregiver is frequently used for a parent of a child.
MR. LUMPKIN: I think we can play around with that. We have been tending to use caregiver because it is a much broader term than provider has been, although we haven't really defined that segment.
Mr. Blair: I feel comfortable with care provider in the sense that I am in the health care community so I sort of know how it is used. My only thought about provider is that the general public may have a broader definition of provider and I thought that the general public might identify for with caregiver than provider -- but that is subjective. I don't know if everybody else would agree with that.
MS. DEERING: I think that caregiver -- I think that Barbara is absolutely right -- only I would say, Barbara, it is not just parents anymore, it is more the sandwich generation of the children looking after the parents in many instances, and the spouses. And I think that it is a term that is getting wider and wider acceptance as we all see our aging population. So in that sense, the term "caregiver" does come along, for the consumer, with a lay connotation at this point.
MR. BLAIR: That's a good point.
MR. HARDING: I think provider, in general, is a pejorative term to physicians.
MR. BLAIR: A little bit institutional?
MR. HARDING: It is an interchangeable, anybody can do many of the same things. But it is pejorative.
MR. BLAIR: If we took your suggestion to say health care giver, does that bridge the gap or not?
MR. HARDING: That is much better than provider. To me it is better than caregiver, because I again think of grandma or somebody like that, when you think of caregiver.
MR. STEINDEL: We agree on health organizer as terminology, then we would have health care giver, health organizer.
DR. LUMPKIN: You know, I wanted to go back to that term. I was actually thinking about information organizer because then there is personal information organizer, and it is part of the health information infrastructure. I think we have enough in there without necessarily --
MR. STEINDEL: A personal information organizer.
DR. LUMPKIN: Does that seem threatening to you?
MR. STEINDEL: It is just the terminology is being very vaguely used today.
DR. LUMPKIN: It is --
MR. STEINDEL: You might want it specific for health information with respect to the NHII.
DR. LUMPKIN: It would be within the context. DO you feel that threatens your privacy.
MR. STEINDEL: No.
DR. LUMPKIN: My guess is that most people have personal information organizers. We are trying to latch onto a term that will describe it that is not a threatening term, that does not carry baggage of the adverse sort. If it has any positive --
MR. BRANDES: I think these tools, we want to more than just organize information. There is also medical decision support and other functions that you want these toos to perform. I think the word "organizer" sound like it is simply a file system.
DR. LUMPKIN: Okay, let me ask this question. Hearing that, do each of the terms need to have the same name? Could we talk about what we have described as this personal thing, calling that the personal information organizer. Then we could have a term for the other two.
MS. GREENBERG: No, because it does more, the personal health organizer does more than just organize -- it also supports maintenance, health wellness information.
MR. BRANDES: How about personal health information tool?
SPEAKER: I am just a visitor here, but personal health care organizer sounds to me like something you could buy at Home Depot. I conjures up kind of an accordion file. I don't know. It doesn't capture for me what I think you have in mind, but I see what the challenge is here.
MR. STEINDEL: You walk into Home Depot and you see the sales rep and ask for an NCVHS-approved personal health organizer.
DR. LUMPKIN: Is that a bad thing?
MR. STEINDEL: I don't know. The terminology can go along with smart card technology.
DR. LUMPKIN: That is a little card, your personal health information organizer.
MR. STEINDEL: The one thing that I am having to struggle with is what you said earlier, that we have the three sheets describing each one of the different -- I'll use the word "view in this case, because it is a technical word -- and we also have something else making up the NHII, and that is the part that allows access to the information to come together from the various parts. It is not encompassed, encapsulated in each one. I think that goes along with decision support. The various tools that are created as part of the NHII that pulls the information out of these various views is what creates the information and the enhancements to what is each one of the views. For instance, if we are puling in, in the personal view, if we want to give patients advice from an educational system, or suggest educational material they could see, I don't see it encapsulated in the smart card. I see them being able to go someplace with that smart card, plug it is, and say you need this education module. The NHII is what feeds them that education module. So organizer would be, to me, an appropriate term.
DR. LUMPKIN: Let me take that analogy and move it to the provider view. It would organize the information about that patient, sorry, health care giver view. It would organize that information in ways that are pertinent to that particular visit. If it is a post-surgical follow-up, it would have what data is relevant to that visit, plus any decisional support input that would follow through. So if, in between time, the individual was complaining of urinary sym[ptoms and there was a UA that was given, and if the provider, in moving through that visit, neglects to deal with that UA that was positive, then decision support would have a little window that would pop up in that organizer and would say, what about the UA? So I think organizer may work tehre if you think about organizing information in a way that it can be useful at that particular component.
MR. BLAIR: I think that I am hearing all of us visualizing that the presentation of this concept of a National Health Information Infrastructure, that the audience is going to be individuals who are not part of the health care system. And we are trying to find words that will be safe and understandable to the public at large. I think, as we have evolved, we might be able to do that, not in one step with these names, but maybe in two steps. Clearly, when it is presented, it will be presented as the National Health Information Infrastructure, with Mary Jo's suggestion that we use information to distinguish between these three different entities. Information connotes the content. Organizer then begins to open the door to us describing the different types of functions that each of the users would use to not only access that information, but analyze, interpret and interact with that information.
So maybe if we introduced personal health information, health caregiver information -- I am avoiding the word "population," trying you get to a user -- public health and clinical research information, the third one. Then we get down to functionality and describe that in terms of organizers, where we can start to discuss the functionality. Maybe that makes it easier for us, so we are not doing it all at once.
MS. DEERING: I want to pick up on something there. First, in terms of just the name that we give to the third one. I will put this out to the public health people, but certainly one noun and adjective that is used repeatedly in public health information is community information. So one choice is just to call the third section the community health information view, with a small "c", so to speak.
Having introduced the term organizer, I am still mindful of what I am also hearing from other folks that there is so much more, there is activity there, and real value-added there, and I would also just throw out another term, which could be took kit, as opposed to just tool, which sounds like a single tool. Tool kit is another popular term that people recognize as encompassing a variety of things, of which an organizer could be one. So just because I seem to be playing Madison Avenue today, I will just throw that out as another possibility.
DR. LUMPKIN: I think the difficulty that tool and tool kit has is that, conceptually, you use a tool or tool kit to create something. So it is difficult to describe the something as the means that you are using to achieve it. I am kind of getting more comfortable with this term organizer. It is starting to grow on me as we are describing it in all three views. I actually got to the point of community. I was going to say that if you had not said it, but community can be defined in many ways. Geographically centric, a group of people centric, or a state within the context of a nation, a county -- so it has a flexibility that I think we want to have in what we have called the population term. Depending on what you want to look at or whose health you want to impact, that would define the definition of that community and give it a lot of flexibility.
MS STARFIELD: I'm sorry, I didn't get what was wrong with population?
DR. LUMPKIN: I don't think there is anything wrong with the word "population," it is just that the other two tend to be defined by the primary user of that information. So I thought, to be consistent, we would wind up in that third tier where we have population -- who are primary users of that type of information? It doesn't have to be that way, but that was the only reason I was trying to do that.
DR. STARFIELD: I think the population is a user. I don't necessarily think that community connotes user any more than population. Population has the advantage of sort of being around in public health, whereas community is equally affiliated with the practice community.
DR. LUMPKIN: I think the piece that speaks to me in community, and just because I speak to a lot of groups in my job, population does not connote very much. It does speak to the public health community, but it doesn't speak to the public. People are comfortable with health information being used to determine their community priorities, to be used in community planning, to be used in community interventions. I think it is a terms that gets me to a greater comfort because you don't have to explain it to people, whereas population you do.
MS STARFIELD: Does community connote to you ability to aggregate across communities to get to national health planning?
DR. LUMPKIN: Absolutely. I came to the conclusion that it does.
DR. STARFIELD: As long as we think so.
DR. LUMPKIN: Many of the definitions of community talk about a group of people with a common attribute.
DR. STARFIELD: We certainly don't mean that.
DR. LUMPKIN: It means that it could be a community defined by geography, it can be a community defined by race or residency in a broad sense. Again, I think we are conceptualizing. What we want to do is take the charge out of this and what is different from or approach, because we have to look at this in an international context. I am making some assumptions. Some of the assumptions are that we want to have a national data model. And there have been I think things done in other countries about a national data model. What is different about what we are trying to do is we are saying, how is this stuff going to be used? What is the raison d'?tre for this stuff? And it is to be able to provide an information organizer, either for an individual or a provider or for a community and those who are committed to having some impact on that community either through service delivery or research.
MS STARFIELD: I don't see why we are struggling so hard. In Canada they call a spade a spade and the information system in Canada is populous, built on population information systems. I sort of think we are being cute and I don't think we are going to fool anybody.
DR. LUMPKIN: I think there is a difference. First of all, they have a national health system and if government decides there is going to be a national health information system, they can do that. We have significant constituency groups and people who have to be convinced. I hearken back to my wife's former practice where, if she is going to get involved in the information age, she is going to have to lay out forty thousand dollars to set up a computerized patient record system. Now why should she do that? We haven't made that case and we have not done the convincing, and I think we do have some unique problems here in this country that don't exist in others.
MR. STEINDEL: I think one difference, and I pick up on what you are saying, is that in Canada and great Britain and Australia, they are saying how the data is used. We can't do that here. The only thing we can do is show how the data can be used. So we have to sell it. So we need friendly terms. As Mary Jo said, we have to put on our Madison Avenue hat.
MS. HAYDOCK: To get back to some friendly terms then I would like to return to the discussion that Jeff raised a few minutes ago. I think it really follows from what Mary Jo was saying, and that is that we are really trying to combine two concepts. One is the information, itself, and the other being the access to that information. It probably makes sense to talk about the information first and give it its terms. Maybe it is just information, personal information, and maybe it is patient information, and then to talk about the access method. Keep this separate because it is in the access path that you start talking about who is using the information. That is where that becomes so critical.
I was getting a little uncomfortable when we were talking about health care giver organizer to represent the information, because it is not in fact information about the health care giver. It is not all the information that he might need to provide help, such as the scheduling for surgery rooms or when something else is going to be available to him or her. It is really just patient information. So I would just suggest that we split those two concepts and talk about information and talk about the access as a separate piece.
DR. LUMPKIN: I think I would disagree with your viewer perspective on that because if we are going to provide services at visit, and you are going to schedule surgery, then in your information organizer, you want to know what the surgery schedule is. I can tell you that patients want to know --I when can I have my surgery?
MS. HAYDOCK: I agree absolutely. I didn?t say it very clearly, but that was the point, that it is not just patient information at that point. It is information that goes well beyond the patient and as we described this initially, we are just looking at what we call the patient view, which I believe was to be just information about the patient.
DR. LUMPKIN: No, I think the patient view or the person view, the difference between the provider view and the person view, some of it is exactly what you are describing. When I look at my personal health history, which w in this country, maybe more so than in other countries, believe ought to be accessible by the person who ti is about, the difference is, when I call it my personal view, I may not get the operations schedule at the community hospital. M Now when you are a provider takes much of the information that is in the personal view, or the pertinent parts of information in the personal view, then they would include the information that is important for them to provide care at that particular visit or for that particular problem. So it enhances, it adds in other information sources that would not be available in this view.
Ms. Haydock: I absolutely agree with you. In the organizer there will be a great deal more information that provider needs.
DR. LUMPKIN: Different kind of information.
MR. BLAIR: John, in order to express yourself this time, you wne t back to using the word view. Is that significant?
DR. LUMPKIN: I am actually very comfortable in describing this as a view to multiple data sets. I just wasn't comfortable using the term view to define what it is that we are trying to describe, just because of the baggage that goes along with it, and the fact that we have to be very careful in developing NHII. The experience we had with the unique personal identifier. To the extent that there is a perception in the public that this in any way government being more involved in setting up a national health information database, in which case this thing will go down the tubes. So if we use the term "view" in the descriptive language, we can use to modifier multiple databases kept in secure locations, whatever. But these names are just going to -- I mean, that may be all that people see will be these three names.
Ms. Greenberg: We are probably going to have to vacate this area in a few minutes so they can set up for the next session.
DR. LUMPKIN: Okay. I think we are going to call these information organizers and we are going to see how that sits. We will be back tomorrow. Tomorrow we can I think go over the descriptions for the three information organizers. Now I thought I brought everything. I just have the ones for the person. So maybe if somebody can make copies of the others.
MS. DEERING: We have copies here of the population run. All we have for the caregiver is a single sheet of paper that looked more like an abstract. I am not sure we have received an equivalent document on the provider or caregiver record. I don't know. We have copies of this we can hand out, but we will make some extra copies for you.
DR. LUMPKIN: Actually we did more than one page.
MS. DEERING: That is what I think is missing. This has only five very brief paragraphs that takes less than two-thirds of a page. So I ownder if we got the wrong thing.
MR. STEINDEL: That is what we got from Hedy in the e-mail at the end of last week.
MR. BLAIR: Yes, we did both the breaking it down by the Zoffman framework and we also did the update to the abstract. I'm sorry. I thought you had received both and I don't have access to my e-mail right now. So I apologize for that.
MS. DEERING: We can certainly make extra copies. WE did get the abstract update and we did get five paragraphs of narrative about the caregiver record.
DR. LUMPKIN: So we should have something to work with.
MS. DEERIGN: So we will make copies of those and bring them back here while you are meting. Is your full committee gathering back again today at all? Or do people go directly to the breakouts?
DR. LUMPKIN: They are going to go to the work groups and the subcommittee meetings.
MS. GREENBERG: Let me just say on this that I wasn't quite sure myself, on the caregiver -- when you and Hedy worked it out, did you go through the same framework of overview, what are the benefits, why and all of that?
MR. BLAKIR: Yes, the ZOFFMAN framework being the how, the what, the why, plus we also did the abstract as well. We finished that early.
MS.GREENBERG: You didn't get the former document -- Hedy is at HL7, but I can have our secretary check her computer and see if she sent the wrong document. Or maybe even contact her so you could have something if there is a more expanded document.
DR. LUMPKIN: The other issue is whether or not we can find a day -- what I would like to do is suggest that we spend a day in December getting together on this, because I think that we are ready. We have done a lot of the conceptual stuff and I think we are ready to sit down and sort of put all this in shape and then begin to flesh out what we need to describe the structure. I suspect that we need to spend a little bit of time on the rest of it and determine what there is that we need to do and that we can just incorporate it by reference from what's been done in the other English-speaking countries that have been taking the lead on this.
Tomorrow we will see if we are still comfortable with information organizer, go over the documents -- hopefully we will be able to find the lost one. See if we are comfortable where they are going. Then try to pick a time when we can meet in December to spend a day on this.
MS. DEERING: We also have extra copies of what is called the personal health record for those of you who don't have that with you. Does anybody need an extra copy of that?
DR. STARFIELD: I got something from you and I sent back comments on it. Where is it now?
MR. BRANDES: The comments are incorporated in here.
MS. DEERING: That is the population part.
MR. BRANDES: No, it was the personal.
DR. LUMPKIN: Maybe if you could pass those out.
MS. STARFIELD: This one, the population one, where did that one come from? That's new also.
MR. BRANDES: We just made that one up on Friday, based on the outline that was submitted by you and Dan and Steve.
DR. LUMPKIN: And he just handed that out. So we can take a look at that and then we can have a little bit of time to discuss all three tomorrow. I guess we need to break up. Every time I want to say that we are discussing semantics, I just remember Betsy Humphrey saying that everything is semantics. Our discussion today really helped us come to some common agreement of what it is that we are talking about and even though it may seem that we are discussing one or two words to describe these entities, we are actually coming to some agreement. At least I am hearing some agreement of what we think we are talking about. It seems that once we can agree on that, putting it down on paper becomes easier.
So we will reconvene tomorrow for another short meetign and go from there. Thank you.
(Whereupon, the meeting recessed at 1:25 p.m., to reconvene the following day at noon.)
P R O C E E D I N G S
DR LUMPKIN: The first thing I'd like to do today, despite the fact that we had a long discussion about this yesterday -- as I tried out the term organizer, it just didn't seem to fit. So I think I could get comfortable with the word "view."
DR. STARFIELD: May I make another suggestion? Portfolio.
DR. LUMPKIN: Portfolio. The only --
DR. STARFIELD: Think about it, John, before you react.
DR. LUMPKIN: No, I am only suggesting that the term that we want to portray should have some virtual meaning.
DR. STARFIELD: That was not true for chords.
DR. LUMPKIN: No, chord was just a place holder. So let's think about this. This is not an issue that we have to resolve today. As we get some ideas, let's toss them on the list serve. As I mentioned, we are going to try to get together for a day in December. We will poll on a couple of dates. One was the 20th and one the week before, because Barbara can't make that week, but maybe we can try the week before to see if we can get together and see if we can spend a day face to face,
Okay. Wayne, did you want to raise a couple of items that gets us ready for our presentation? The extracts?
MR. BRANDES: There is going to be a presentation at the New Millenium Conference and I guess Mary Jo asked who the presenters are going to be. For Healthy People 2010 in January, here is a draft of the panel presentations. It is January 24th through 28th.
DR. LUMPKIN: The Millenium Conference -- and it will be where?
MR. BRANDES: It will be somewhere here in Washington and it is the launch of Healthy People 2010. Here is a draft proposal for the presentations, and there are also a couple of other things I am handing out.
MS. GREENBERG: Do you know what day this is actually -- this one?
MR. BRANDES: I don't think we have a date.
DR. LUMPKIN: So who is putting together the conference schedule?
MS. DEERING: The call for abstracts just closed and they are being reviewed now. Some time in October they will assign dates. This panel -- if people can identify some blackout times when you cannot come, we will certainly work around that.
MS. GREENBERG: I just wanted to mention that I know the Subcommittee of Populations is meeting on January 24th and 25th. Is that the meeting you were able to attend, Barbara?
DR. STARFIELD: Yes.
MS. GREENBERG: It is the only one you are actually able to attend, so it would be difficult for you to attend this if it were on the 24th and 25th, I guess.
DR. STARFIELD: The 24th will only be an evening reception. The launch by the Secretary and possibly the White House of Healthy People 2010 will be the morning of the 25th. There will be plenaries most of the day of the 25th, with possibly only one breakout session.
MS. GREENBERG: It sounds like it will likely be after the 25th.
DR. STARFIELD: Most likely, unless it turned out that, because people were in town for something and they really wanted that Tuesday afternoon slot, if there were breakout sessions.
MS. GREENBERG: I think the subcommittee is talking about a full day on the 24th and until one on the 25th.
MS. DEERING: So the afternoon of the 25th might be a possibility or the morning of the 26th. If people would look at their calendars and e-mail me, let me know?
MR. BLAIR: Does the NCVHS budget cover those of us who are out of town coming to Washington to attend that meeting? It is not an NCVHS meeting.
MS. DEERING: I don't know if I budgeted -- you mean the work group?
MR. BLAIR: Yes.
MS. DEERING: I think the work group members, certainly. You are participating in the meeting. I thought you meant all the NCVHS members. I don't think the budget would permit that.
DR. LUMPKIN: Okay. I would like to call people's attention to the document that has the VIN diagrams in it. It was just apssed out. What I would like you to pay attention to is first, the definition, where it says or kind of dfines -- what is GII?
MR. BRANDES: Global information infrastructure.
DR. LUMPKIN: Okay, it has a big circle for global information infrastructure. Inside that is the National Information Infrastructure, which is defined by the Academy of Sciences as the collection of all public and private information services, both facilities and content-based, operating as a complex, dynamic system. It exists today but is, and always will be, in a state of flux-- National Academy of Sciences. Then within the NII is a NHII circle, completely subsumed within NII. It says that the definition, and this is what I want us to listen to closely, is the sum total of the information technologies, standards, applications, systems, values and laws that support all facets of individual health, health care and public health.
Then we have underneath that is an NHII VIN diagram with three circles that overlap each other -- three intersecting circles -- the consumer view, personal health record, and underneath that -- that's interesting, consumer view -- tool for personal management of health and wellness, consumer supplied health and wellness information, lifelong summary of clinical encounters from electronic integration with caregiver records, then caregiver or health caregiver view. This is an electronic treatment record, person-based, institution specific. Summary data supplied to personal health record. Out comes and other morbidity and mortality data supplied to population health record. Jeff?
MR. BLAIR: I am kind of tagging along with your comments and as you read these things, in my mind, I am going through this little mental translation. I think it was Mary Jo, yesterday, who wound up indicating information and you just suggested maybe view -- I think the combination of those two gives us the flexibility without a lot of the problems that we would have otherwise. Let me explain a little bit.
I think in the health care information infrastructure, we really start to go beyond the notion of the boundary of a "record." It is personal information and it is the personal view of that information. It would be caregiver information and the caregiver or provider view. We could wind up indicating a population view of the information. We know that the information is going to overlap among the three, in many different ways and, over time, it will change. So anyway, since you are now reading that page, I thought I might interject those thoughts because I am going through the mental translation while you read it.
DR. STARFIELD: I don't know how much wordsmithing you want on these things right now.
DR. LUMPKIN: As long as they are conceptually there.
DR. STARFIELD: I guess I am not sure this is a conceptual issue or not, but under caregiver record, outcomes and other morbidity and mortality data, actually we have supplied to the population health record because we have been thinking of the population health record as more than that. You can't deal with outcomes unless you know something about process, and you notice that in the population health record we have talked about access, use kind of issues. So I don't know if that concept or wordsmithing.
DR. LUMPKIN: I think we need to make the statement more generalized. We will have to think about that because what we want to say on the caregiver view, it is really populated by information from the personal view which is data that may be authorized, information from the personal view, information from other caregivers that is authorized by the person, and then information from the community from the population.
DR. STARFIELD: Which is also authorized, I would think.
DR. LUMPKIN: So I think structurally, I think we want to talk more about where data comes from under a view than where it goes to. So where we say other morbidity supplied to population health record, we would take that out of there and we may say that information comes from the caregiver view, under the population one. And we are of course using record and view and organizer and all those terms kind of interchangeably right now because we will make a decision about that at a later date.
Then under population, tool to manage population level data for essential public health functions, electronically integrated with traditional and non-traditional public health data sources, including caregiver or personal health records. We have talked about calling that the community view or whatever that term is.
Mary Jo, we opened up with this item -- we didn't like organizer -- so we are back to the drawing board but we are not going to worry about that now.
Under the community view, did we perceive this as only being public health? Wouldn't it be researchers and quality assurance and those kinds of things?
MR. BLAIR: Accreditors.
DR. LUMPKIN: Accrediting agencies.
DR. McDONALD: The community view could actually be a compelling view for clinical care, if we could ever get to that stage.
DR. LUMPKIN: Clinical care, which is where the quality piece ties in. It is hard to tell on one encounter what is quality, but when you start looking at trends over time, and you begin to say there is a problem --
DR. McDONALD: I was just saying, someone comes to your ER and you don't know what the heck has happened anywhere else, but if you have a community view, you do. It is just plain old regular medical records.
MR. BRADES: That is part of the caregiver view.
DR. LUMPKIN: That is part of the caregivers view and if you've got --
DR. McDONALD: But words are going to be clashing because the caregiver, if life was good, would like the community data to develop care.
DR. LUMPKIN: That is the reason these are intersecting circles. So I think obviously there is some data that is going to be unique to each one of these documents, but there is also data that is shared, as appropriate, and that is why we are looking at the words view, organizer and so on -- some term that denotes that this exists today but always will be in a state of flux, as the Academy of Sciences termed it. But essentially it is a virtual document whose content will be determined by the need at that moment.
DR. FRIEDMAN: I do think that the definition of population health record in the abstract is more inclusive and a little bit more descriptive than the VIN diagram.
MR. BRANDES: There was just a limited amount of space.
DR. FRIEDMAN: I understand that and as I say this I completely got it.
DR. LUMPKIN: I suspect that if we want to do a graphic, I think it is probably better to just list the view and not try to do a summary of what that is. Then as you are doing the presentation, one can describe that view. I think we may be trying to distill the concept out too far.
DR. STARFIELD: Can I ask a question about the abstract? The abstract is always submitted, I suppose? The population health record talks about immediate threats. I don't think we ever agreed that it was immediate threats that the population health record was after and I am surprised to see that in there.
MR. BLAIR: I thought that was referring to epidemics, national emergencies, terrorism and things like that.
DR. STARFIELD: It is not only them. That is part of it. It is health threats and health threats include immediate health threats.
DR. LUMPKIN: Yes, the set of threats would include immediate and non-immediate threats.
MS. DEERING: I think there will be time to wordsmith the abstract later because you are a privileged group that has access to the office which is going to be writing the document. I would suggest that you get your edits in as soon as possible, you who are down there as leads in those presentations. We are happy to make it look like you want it to look, but also what you don't see on that particular sheet is that we had to come up with key words for you and some other things. Maybe the next step for us is actually to send out the more complete abstract for each one that was submitted so you can see what key words we selected. But we just had to get them into the database before we closed down.
DR. LUMPKIN: So what we can do is have everyone look at their individual abstract for the area for which they have the lead, kind of buff it and get it back. Again, obviously we are presenting this kind of early in the process and it is just to see if we can get some feedback.
DR. McDONALD: Could I just clarify that this population health record does make a clearer distinction as a name than community, which I think will really confound people's thinking. It does. There is no confusion.
DR. LUMPKIN: I knew I should have taken a vote yesterday. I had more votes.
Okay, do Dan?
DR. FRIEDMAN: Given the immediate pressures, I don't know if this is a helpful suggestion or not, but perhaps we should defer on putting a name on the birth certificate for population/community health record until we have nailed down some of the issues, exactly what we are talking about.
DR. LUMPKIN: What is going to be the format of this session?
MS. DEERING: It will be a panel presentation and, as we had suggested there, and we have to fill in one of the holes you see on your list, you would have the whole session. There would be a moderator. We nominated me for now because we would have John giving the lead-off paper. We thought that you two would give the population/community-based presentation. We thought that we would put Jeff's name down for the patient/caregiver one and then you will notice there is a blank there for the personal health record. I didn't know if there was a work group member who would like to take the lead on that. Our staff has taken the lead in writing it so far, but if there is a staff member who would be appropriate to put next to the personal health record, we would be happy to do that. It would be a typical 90-minute session.
DR. LUMPKIN: If we don't get any volunteers, like between Barbara and Ann, who are both down for the population, then I can do that.
MS. DEERING: The personal?
DR. LUMPKIN: Yes, I can present that. The reason why I asked for the format is because this may be a good venue for us to vet some of these concepts. Let's ask the group -- give kind of the rationale for the community and the rationale for population. What we are playing around with, conceptually, is that population is not a term that is very well understood. People understand community and community is a scaleable term, because community can be defined as narrowly as the people who live around me to as broadly as people of my cultural and ethnic persuasion throughout the country, or it could be the community of a nation. So that is kind of what we are toying around with. Let's get some input from the group and this may be a chance to use this less as a presentation and more as a hearing. So we would want to keep our presentations relatively short. Highlight the issues and depending on where we go at the next meeting, we can even vet the concepts of whether it is better to call these things views or chords or organizers or something along those lines.
DR. McDONALD: I think what you are going to do is have people with different agendas and interests pushing different ways on the words. The reason why I like the population is that it is the statistical aspects that it highlights. Community doesn't say anything about that. CHIN, Community Health Information Network, was really a way to get all the data in one place and it was eventually supposed to be care records. The way the health care is merging, shoot, one big hospital is a community now. So I think it is just confounding. It doesn't highlight the differences as well as population.
DR. FRIEDMAN: Again, whether we call it population or community, I think there are two or three issues that we are circling around. One has to do with what level of aggregation we are talking about. Are we talking about individual data. Are we talking about data aggregates among the unit, or what.
The second issue is identifiability. There are really four issues. The third issue is linkage and whether that is anonymized or not. The fourth issue, which is related to most of those, is longitudinality. I think once we become clearer with ourselves about what we are really talking about with these four, those four issues, I think some of that may be of less concern. It may be of less concern to me, whether we call it community or not.
DR. McDONALD: The population one I think is easy. All of these things are longitudinal, or what are we talking about? They are snapshots. The linkage, if you don't have the whole thing linked, it is not a population database. You are back to looking at trashy numbers. You don't have any idea what you are talking about.
DR. LUMPKIN: But I think you are talking about data that comes from the other pieces, but there is some data that is derived by a community. Whether or not the water in that community contains high levels of nitrite is an important factor that needs to populate both the personal and the caregiver view, because they need to make a decision whether Mom comes home with the baby. Do they use tap water to make the formula or don't they? There are some key issues that are not just aggregated data, but are in fact independent determinants in a community. That is the reason why population does not quite necessarily get that for me. But again, I think the benefit of being able to say, as part of our presentation, that we are kind of torn between these two is to get people to comment who have different agendas. Then we can decide, because we have the right to, what our agenda is and what seems to fit mostly with what we have been hearing. So there are some crucial decisions we can make as to the terminology, as long as we are conceptually clear on what goes inside there.
The other piece I have, and this is just my approach and it is based on my experience dealing with the legislature, dealing with the public in trying to sell new concepts and ideas, is that terminology is very important to people who are not on your side. The people who are on your side are not going to be as picky about the terminology that you use. Which makes more bridges? The term "population" or the term "community?" I think that is something that we have to consider. I would say that community would build more bridges. People who understand what population-based approaches are and understand statistical approaches would be more willing to accept community than the people who have no idea what a population-based approach is are to accept the word population. It is just one of the thought processes I had.
DR. McDONALD: You opened a different window on my thoughts. You gave me a new perspective on that, but then I started to wonder if you had the right categorization. Then you are talking about public health -- well, firstly, the issue about what is going on in the community is important to the individual record, so if that person is worried about their baby, they are going to be looking at those variables that affect their direct care. It is just in terms of a large separable categorization of functions, population is prettier. When you are saying community medical record, I would say we should make one big one and call it that -- then you get everything. You can get your population data, you can get your -- in some sense your enlarged public health concept is what "the" medical record should be in some ideal world. Just make the whole thing bigger and that is the only problem I have with it. You don't have the categories separating out as well, but it is a beautiful concept. I think that is what we should have, a community records system. All these purposes you get out of one thing.
DR. LUMPKIN: But that is actually why we chose not to use the term "record," because it is a view to certain data that is distributed in a non-consolidated fashion. The caregiver only has the view to the data that is important for that particular visit.
DR. McDONALD: No, no, don't do that to me.
DR. LUMPKIN: The internist may not have a need to see about a psychiatric visit the person had as a child and that person has not given him authorization to see.
DR. McDONALD: You are changing the whole practice of medicine with that statement.
DR. LUMPKIN: I don't think so.
DR. McDONALD: I am seeing patients and I can tell you I can give you cases for every one of those things. If you start to put blinders on me, let me run an operating(sic) with a blinder then. We don't know what is important to care until you get the whole story and you see this connected. So if care is just docs in a box at the emergency centers and that is all we are doing, that acute care, that is a different business than a lot of us are in. I would not like to get that too strongly defined that we basically are just visit caregivers and not patient care givers.
DR. LUMPKIN: I think you are actually defining what I am talking about a little bit more narrowly.
DR. McDONALD: See, you do ER care, so you may really be thinking about acute care.
DR. LUMPKIN: No, actually I am not. I am thinking about those who do longitudinal care. But there are, for instance, in many states laws that give a different level of protection for mental health records and substance abuse records. A patient may come to you for cystitis and unless they let you know that that record exists, it may never come up and may not be pertinent.
DR. STARFIELD: But you can always ask the patient and you should. The patient can say no.
DR. LUMPKIN: At the point where the patient says yes, all of a sudden your view gets populated with that data. That is the reason we are talking about a dynamic and a virtual kind of thing that actually encompasses all these things. It is not like you get plopped down a record that is three feet tall or three feet thick and you have to figure out this going through that process.
DR. McDONALD: The other side of that is you talk about opposition and it might be better off, I phase one, not even allowing any of that highly protected information to be in the system, in a collective system. I think you are going to wind up with immediate opposition from some who are worried about the privacy issue.
DR. FRIEDMAN: I think that is a good point on the one hand. But on the other hand, a couple things, one of which is a lot of the information already is available.
DR. McDONALD: That is the one I was focusing on. It is just that area where we do have these highly protected things an they are in fact highly dangerous to the patient and relevant to care. We have had some direct experience with that.
DR. LUMPKIN: But let's go back to another fundamental concept. We are not talking about a single system. So to the extent that this is an enabling and creates ability to have the data shared -- so it is a technology standards applications system values and laws -- so in a sense, and this is why we have struggled with the terms, that we don't want to connote that there is going to be a huge government database. So the mental health provider, the person will essentially own a meta database, and that meta database will describe where their health information is. Access to that health information that the person wants, in some cases, if it is not automated, it may just tell them where the record is. Then they give rights to their caregiver to pieces of that meta database. So they can then access the information that is pertinent to them. In addition, their caregiver then accesses information that they generate from laboratory tests and other things.
So there is that kind of interactivity, but it all has to be keyed in on the person authorizing the sharing of their data. But the technology and the systems that we are talking about is what enables that to occur.
MR. BRANDES: Can I ask a question? We have been kind of operating under the assumption that the records are an actual thing, a tool, a thing separate from the NHII, which is why it is distinguished there as a consumer view, and then under that is the record, a tool to manage that rule. But I think maybe that was incorrect.
DR. LUMPKIN: No, that would not be true. The whole umbrella is the NHII, and underneath that there will be one piece which will be the national data model. You can just pull in that thing from Australia as kind of an example of that. That enables one piece of it.
Then there is the quality piece. And I have asked the quality work group to kind of work on that. It is another piece and that may be fed by any of these views. But what we are trying to do, and what I think is kind of different in our approach is, given our diverse and decentralized health care system, that we need to have some way to view or get access to the data that is pertinent to the individual who is getting it and for what their purpose is. So all of that, the ability to create a personal view and the technology that allows that to happen, to create the caregiver view, of which a lot, if not all, is subsumed under an electronic medical record. Then the community view, which is one of the three pieces or four pieces -- there may be another piece we haven't thought about -- of the NHII, which would be the views, the national data model, the standards are part of that, and the quality piece.
MS. GREENBERG: I am not quite clear how the quality -- the quality piece may cut across several of these it would seem. If the model has different functionalities, then quality it would seem would be incorporate into the model. I think it would need to be explicated. But I don't see how it is a separate piece.
DR. LUMPKIN: I think it is a separate piece until we figure out exactly how it fits in. I think it needs exploration of what this piece is. But certainly our focus on quality and our ability to look at systems and measurement are something that really you don't see discussed in other national models. How do we take that piece? Let's look at it first and see do we integrate it into the community view? Do we look at it as a fourth view? Or is it a separate entity within a three-part NHII?
MS. COLTIN: I think it is sort of begs the question of where does the responsibility and accountability reside? When you are looking, most of the answers to those questions until maybe five years ago would fall at the institutional level. But the caregiver record could serve that purpose -- there have been hospital-specific measures and so forth. In the last five or six years, we have seen a movement into whole health plans, accountable for quality. So I ask the question, is there a health plan view and, if so, did you envision that as the population view or the caregiver view or some combination of those two, because in order to be accountable and responsible for the quality of acre that is delivered access institutions and providers, the health plan needs to have access sometimes to more information that maybe an individual caregiver might actually need to have access to. I am particularly concerned about this as Congress debates legislation around allowing patients to sue their HMO. If you don't have access to monitor, but you can be held accountable for what happens, but you don't have the information to intervene, that becomes an issue. So clearly that is all wrapped up in this quality question. So it is not clear to me if there needs to be a fourth view or whether the health plan view or the mega reviewer, bigger than the health plan --
MS. GREENBERG: You know, public health has had some view of being --
DR. LUMPKIN: There are a lot of hands. I am just going to my right and then move through the rest.
MR. BRANDES: I just wanted to say as far as the narratives, when you are going through the narratives, they were written under the assumption that we are talking about describing a tool, not so much the NHII or the views of the NHII, but tools to manage those perspectives. I guess they are going to need to be extensively rewritten from a different point of view, so I just ask you to keep that in mind.
MS. TRUDEL: I also notice the lack of a plan view. I am trying to see where the administrative aspects of health care and electronic commerce in health care fit in, and they don't seem to fit in as well to these views as they might, I think. This seems to be more of a clinical way of looking at the world. I don't know if that was deliberate or not.
PARTICIPANT: Two related comments. The first one is on UK and quality. I just attended a session a week or so ago and I heard some the UK's first presentations on quality and , yes, they are separating it out from the NHII and they are approaching it more from a practice standards point of view that professional societies are putting together. They haven't really grasped the aspect of linking it in with their NHII yet. So they are kind of taking the approach that we are, that we just discussed right now, of knowing quality has to be in there but not figuring out how to put it in yet.
The second comment I think argues for calling this the provider view again. I recall back what I wrote up originally, when I sent out the document to the work group on view, I talked about the provider view as extending both to the individual caregiver and a plan, being a provider or a manage care organization being a provider, and keeping the records within their whole organizational component. So we may want to think about going back to the provider view if we want to encompass that aspect.
MR. BLAIR: When I see this diagram -- I mentally see it -- I look at it as a very different environment than what exists today with files that are records, and barriers to information, and institutionalization and segmentation of pieces. To me, by creating such an information infrastructure, it isn't just that quality would be improved inherently by improving access and inherently by giving the provider or caregiver access to greater information that might be more specific, but more than anything else, in my mind, is that the interactions of these three and the integration that is implied by these three, could give potential for dramatic improvements in quality and not just a single dynamic improvement, but continuous improvement a la the fact that once you are capturing clinically specific information as part of the process of care -- not as a separate after the fact process -- but it is integrated with the process of care, then that information is aggregated on the population level, and you wind up being able to measure outcomes far beyond out ability to be able to measure them today, because you would be able to measure them much more quickly with larger population bases and less expense, and feed that back to the provider, where quality becomes concurrent, not retrospective, but concurrent with the process of care, where you have decision support that just as the medication order is placed, drug-to-drug, drug-to-allergy, drug-to-lab interactions are there right away -- the clinical protocols, clinical guidelines are there right awa6y -- the access to be able to get to additional info is there right away during the process of care -- that kind of improvement in quality I think is dramatically more than what we have been able to do with quality assurance programs. So in my mind, I think that inherently quality is integrated inseparably as part of this information infrastructure.
DR. FREIDMAN: A couple of comments. I agree with Jeff. I see it more as a function than a separate component. But second, I think if we are talking about the quality and how it relates to NHII, I think we need to be careful about not starting from the assumption that we are just talking about quality of health care, and that we really step back and talk about quality of health with the quality of health care being presumably or perhaps one component of that. It is a little bit dangerous, as it were, to sort of struggle with the assumption that quality of health care is quality or the sum total of quality.
DR. LUMPKIN: Let me sort of toss out some of my sense of the discussion we just had. I think we need to have one or two additional views. One of them I am going to call the administrative view of r the lack of a different term. That is a whole different bubble. That is where the health plan fits in. That is where the managed care, the insurance plan, if it is an indemnity whatever, intersects with the personal view because it is important to know what coverage I have. That is part of making individual health care decisions, and individual health decisions. It impact obviously the caregiver because it determines the options you can make. And it impacts the community in whether or not there are actually providers there. What is the structure of the providers. Where can I send this patient? So I think there is another view.
Hat us kind of above our three views. The other piece is, and I have not quite become sure of if it is a separate view or it is part of the administrative view or you may want to put it somewhere else --and that is quality. A person may make choices about the quality what -- they do all the time -- am I going to have as hamburger? That is a choice about quality of life as well as health and health care. Because they are deciding whether it is more important to them to stave off a future benefit or risk of heart disease or something else, versus the current quality of their life because it is something hey enjoy?
They are making quality choices about their life and about their health. So you can kind of go through that same diagram, looking at quality of health and looking at all the other three views. So I am not sure if it pops out of the bottom or if it is what seems to be pooping out of the top with the administrative view.
MR. BLAIR: Performance measurement and quality measurement may be a fucntion that is part of he administrative view.
DR. LUMPKIN: We can put in administrative view ad a separate view and then we can talk about the quality component of each of the other views. That may be where it fits. There is a quality component to the personal view; there is a quality component to the caregiver view, there is a quality component to the population view and the administrative view.
Dr. McDONALD: The quality discussion has gotten very blurry. Everything has quality.
DR. LUMPKIN: And the rest of it isn't?
DR. McDONALD: You can apply the adjective quality to anything in the universe. Every time you do it everyone want sot cheer because you want higher quality, whatever. So you cannot ever argue against quality. But when you use the word quality in health care in a very specific sense, and it is really a general word describing how good the delivery of the care process is as measured by one or two processes. If you talk about it as a static thing, you might just have it because you had parents who had very good genes and it has nothing to do with the inputs to the process. So we have traditionally had thoughts about the inputs to the process, so I don't know what inputs you are trying to measure.
DR. FRIEDMAN: With all due respect, I think that is one notion.
DR. McDONALD: We can use the words any way we want but lay out yours so we know what you are saying. We don't know what you are talking about.
DR. LUMPKIN: But when you take independent quality word and say the patient has quality -- quality wife, quality house quality car -- and what I was suggesting is in fact the definition is different for each of the views.
DR. McDONALD: But lay one down. Let's not just use the global word because we can talk about love and quality and good and we don't get any decisions made. We can't decide anything among each other. We don't know what we are talking about.
DR. LUMPKIN: I think the quality applied to care process ahs been well discussed and well understood and it has been measured and it is in law and regulations and the other quality, you have to first lay it out and say what it is. Is it related to inputs? That is what I would like to believe. We can judge how well the inputs are.
MS. GREENBERG: When you were going to say that you thought that quality was in the consumer view, I thoght you were saying that consumers were very interested in the quality of care that will be provided by a particular hospital or provided by a particular caregiver, which is really different information than what the caregiver is looking for. In fact, when we had the discussion on the twenty-first century vision, we had someone from the media and she said the number one piece of health information in her view that people wanted was a good doctor. This is something -- does our health system provide that? I think even that aspect of the consumer view is important.
MS. COLTIN: But that is derivative of all the informati0on in the other views. In other words, you build that information based on quality measures that you make, using the raw data, the more granular information that is in these views. You put it all together and it is some distillation or aggregation of all of that information. There is a lot of things like that and I am not sure we want to get into enumerating all of the things there are, like all the various reports that could be constructed by using information in all these views. To me, that is an example of a report or something that could be constructed from it.
DR. LUMPKIN: We are running out of time. Even though we went into this intending to look in detail at each of the descriptions of the views, I think that that is something that we can do electronically on the e-mail and use list serve to try to refine these. But one of the outcomes of this discussion is that we have added a fourth view, clearly a fourth view for administration, and that we need to explore either a separate view of quality or a description of quality within the context of the other four views, and that we need to kind of think about that. Obviously we are dealing with some rather high level conceptual concepts, but sometimes these things are better if we can get to a point where we can let it sit and come back to it. Then kind of let it sink in. So we will do that. We are going to try to get together in December. We want to use the list serve to continue to vet our concepts, but in the meantime we will have to think about springing on the groups some way of defining administrative view, and I think I will try to see if we can take a whack at it.
DR. STARFIELD: Have we definitely decided we need a fourth view? I am not persuaded that we need a fourth view, but maybe that is industry's responsibility and not ours. I am not persuaded yet, so I hate to spend energy working on something I am not persuaded about.
DR. LUMPKIN: Can you explain that comment, that industry is responsible?
DR. STARFIELD: It is fine to have an administrative view if the whole population is in there. But the whole population is not in managed care. So I don't know why we are dealing with that.
DR. LUMPKIN: I would see managed care bing a subset of the adminsitrative view. It doesn't really matter whether or not -- where do you take, for instance, in the vaccine for children program, how do you deal with the fact that you have to maintain an inventory and that you have to make sure that the provider has an adequate amount of vaccine? Where does that fit within our concept?
DR. STARFIEDL: I just think there is a whole other thinking about what we are after in this NHII. It may be relevant, but it has just not been in the concept so far.
MR. BRANDES: I think a lot of those types of concepts belong in the global view, like manufacturers of vaccines, manufacturers of drugs. We are thinking about the population view as just containing medical information, even though we occasionally slip in and say, yes, there is some environmental information in there. But I think it contains a lot more information than just environmental and medical and clinical information, summary public health information -- the status of medical supply in the country.
DR. LUMPKIN: Let me suggest this. We will all take as our homework assignment over the next week to put together our best argument and we will send it on the list serve and we will try to reach some conclusion on this particular area. If there is anyone who would like to participate in the list serve, if you would let Marjorie know here or let Mary Jo know, and the names will be added. We certainly want to invite the members of the committee to participate. I think it is a conversation and a discussion that can lend itself to group-think, and so having people who may not spend all their time look at it from time to time and say, oh, by the way, that will help keep it in focus.
(Whereupon, at 1:08 p.m., the meeting was adjourned.)