[This Transcript is Unedited]
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DR. DEERING: When we first tried sending this out to the full committee in December and asked for a January response date and didn't hear from them, we sent it out again to them and didn't hear anything. So it was really on fairly late notice that I asked my staff to at least go to begin to fill in the outline, based on the sorts of things that we thought we would hear, and we were simply unable to finish it. And Cynthia and Leslie, I credit them with all the hard work until late last week. So that is the reason why all this material didn't get to you in advance time for you to read it.
I have extra copies of the recommendations here for any who don't have that.
PARTICIPANT: I don't think that anybody has the second document in the recommendations. I think the outline was passed out yesterday.
DR. DEERING: Right. The other one was sent to staff by email, but a lot of it got out too late for them to open. Jeffrey, you had said you wouldn't have time to see it yet. I'm giving you a copy. Anyone else who does not have it?
We talked to a couple of writers and interviewed one, and thought we were going to have some progress. But then she too felt that she was not the person to take it at this initial stage and run with it. She would have wanted something that was further along, something that showed her more the direction to go. This is something that was recommended by Susan Canaan, who unfortunately is locked in for a lifetime on another activity.
So anyway, our other plans for getting this paper further along just didn't materialize at this point.
DR. FRIEDMAN: One thing that Susan suggested yesterday was the possibility of hiring a writer not so much to write the initial draft, but to polish, move stuff around, et cetera.
DR. DEERING: Exactly. She may have been talking to her friend. That was where we left it, with a friend. After we could get the bits and pieces a little further along, then the friend felt like she would be comfortable coming in as a writer or editor, heavy on the editing, not so much from a technical writer side.
DR. STARFIELD: If I remember correctly, they also talked about wanting to hire somebody else to do the documentation, and the need for that. Have we moved on that at all? Listening to the discussion around the table yesterday, it seems like that was more needed.
DR. DEERING: I think there were a couple of things that happened. First of all, we felt that for the time that we had available -- and again, our apologies, because Healthy People just really are such children, but we have accumulated an awful lot. If you look at our resource list, we have actually accumulated an awful lot of the documentation.
So again, with limited time available, we had hoped that this other woman would be able to step in, since we had a bibliography, thanks to lots of you, that was fairly complete, and perhaps begin to work from there. So that is an excuse for saying no, we didn't go ahead and talk with anybody about doing additional documentation.
DR. STARFIELD: I wasn't sure that the problem statement really -- or how the NHII would solve these problems. This sounds just like documentation of problems, but not pegged to information. It has got to be something that says this can be solved by information, and this is how.
DR. FRIEDMAN: I don't know if this is the time or not, but I was thinking -- I'd leave that to John or Mary Jo, but I came up with an alternative high level of outline that at some point I wanted to introduce.
DR. LUMPKIN: I think we should do that now.
DR. FRIEDMAN: Okay. As I said, this is sort of high level, and it is intended for at least a partially more popular document.
What I am suggesting is essentially five parts not of equivalent length, with the first part being three or four future scenarios, essentially laying out real-world examples from 10 to 20 years for community health dimension benefits, for personal health dimension, for caregiver dimension. Of course, this is really integrated, everything from a child who has just moved who is allergic to antibiotics and gets an ear infection, to a clinical example, et cetera. But the three or four, maybe a half page each, future scenarios, without even mentioning the NHII.
A second section then would be again fairly brief, a couple of pages of discussion of barriers to achieving those scenarios. In other words, why can't we do that now.
A third section being a very high-level view, brief view, of what we need to do -- we haven't even mentioned the NHII yet -- what we need to do in order to overcome those barriers, emphasizing that our present results, as it were, in terms of population health, in terms of clinical care and so forth, don't match our investments.
Then the fourth section would be very brief, introducing the role of NCVHS and developing the concept of the NHII. Then fifth, which would be the bulk of it, is essentially the NHII, which would include -- most of this we already have -- a section including some version of John's overview would be really helpful, because I think that is really understandable. I think it is a really good popular introduction. A third section could be functions, a fourth section could be benefits, then a brief section on predecessors, both in the U.S. and international in context, then introducing the three dimensions, then a section on integration, and then a section on what is needed to implement.
I know this isn't complete, but essentially what I am proposing is starting out with what it could be, why we would need it, why we can't do it now, and then introducing the concept of the NHII technically later on in the document.
DR. STARFIELD: That sounds right to me. Do you have it in your back pocket?
PARTICIPANT: It's real short.
DR. FRIEDMAN: Yes, it's real short. But I also think a lot of these things have already been done, and much of it would be incorporated. Some of it we should -- personally, I think NCVHS and NCVHS activities, the HIPAA stuff --
DR. STARFIELD: An appendix, maybe.
DR. FRIEDMAN: Yes, I agree.
DR. LUMPKIN: I think that we may want to look at a couple of appendices which may be following that scenario, which I think would be useful. Maybe an appendix on international, because we have gone into that, just what is going on, that section that we have, so we would mention it in the text of the document, maybe two or three paragraphs, but actually having an appendix which has the resources and the URLs that people may want to go to.
Another appendix -- I think it would be good to have something on standards. I kind of remember from way back when, when we were starting work on HIPAA, there was a document we had which I have been trying to locate. But it was a 20-page document that explained BDI. I don't know if we can find that, but a couple of documents that explains some of the basic concepts of what are standards, what is interchange of data, but the kinds of things where we pique peoples' interest. There would be some appended documents that people could get into more depth on.
DR. STEINDEL: There is a WIDI document on what is BDI. I think that is probably the one you're talking about.
DR. STARFIELD: Are you talking about definitions as well as standards?
DR. LUMPKIN: We could think about a glossary if there are terms we want. But I was thinking of -- and then probably append -- when we get into the final version, the document that was being produced on computerized patient records, the letter that we sent to the Secretary on privacy and confidentiality.
DR. STARFIELD: Well, a whole section on privacy and confidentiality so it doesn't get buried last in the list in the document.
DR. LUMPKIN: Besides some of these detail things, I was just wondering, some of the things that we should do even in the beginning is to weave in the issue of privacy in the four scenarios.
DR. STEINDEL: I think that is a great idea. I was thinking the same thing.
DR. STARFIELD: But we have to address the issue head on in terms of the NHII.
DR. LUMPKIN: Well, obviously one of the barrier issues up front.
DR. STARFIELD: I'm afraid putting it in as a barrier is just --
DR. FRIEDMAN: No, in terms of a benefit, in terms of the scenarios, talking about scenarios that show the potential protection of privacy. I am actually -- I was thinking conceptually, instead of just putting it at the end, we should put it throughout. For instance, we have it as a barrier, and we talk about what do we need to overcome -- we can talk about the role of technology and enhancing privacy.
DR. LUMPKIN: Yes.
DR. FRIEDMAN: And then the role of NCVHS and NHII. We can talk about the concerns of the committee on privacy, so it can be woven in throughout the document.
DR. WOLFSON: Just to reinforce the way your discussion is going, in Canada, the general sense is that privacy, as one person put it, the Achilles' heel of all of this information stuff, and it has to be dealt with frontally.
The other thing that seems to carry some weight is exactly the point that some of you are raising, that informatics has the potential to increase privacy. We have a former privacy commissioner in British Columbia who used to do the odd walk-around in hospitals, and be astonished at how many charts were lying around that anybody can open up.
It seems to me that a couple of pointed examples of those kinds of situations would help your discussions.
DR. BLAIR: It is sensitive doing that, but --
DR. STEINDEL: I don't think we should confront the present state, but we should paint the picture of the future state.
DR. STARFIELD: Why shouldn't we confront the present state?
DR. STEINDEL: I think we should let the privacy committee deal with it.
DR. FRIEDMAN: I think in terms of barriers, I think we can do it without being abrasive. For example, an example of going into the ER and going into the admission room and not having a screensaver on the damn machines.
DR. STEINDEL: Yes, you walk into any hospital in a white lab coat and you can read everything.
DR. LUMPKIN: I think we have to do this carefully, but I don't think that we can explain the advantages of describing what it is today. We don't have to -- like in the discussion yesterday about my dentist's office, I think everybody can associate with that. We are not picking off a major specialty or professional organization.
DR. STARFIELD: Just dentists.
DR. LUMPKIN: One could say dentists. It is an issue. These are all small businesses. So I think those kind of examples are very easy to understand. Once you start getting into screensaver issues, walking into the hospital with a white coat, the analogy that came to me as I was thinking about it was the telephone.
Everybody has got a telephone, or most everybody has got a telephone in their home. They don't consider that to be an invasion of their privacy. They pick it up and they use it for what they want to use it for. It is kind of there.
Now, there are some intrusions with callers, but technology allows you to block those calls now. Increasingly, the phone calls at night can be blocked. The only time that your privacy is at risk is, someone is doing something illegal. That is really what that white coat person walking in the hospital looking for charts is doing, they are doing something illegal.
So with technology, we can detect and prevent illegal access much better than we can without technology.
DR. STARFIELD: But we also want to go beyond the illegal things and talk about the things that happen over time that aren't illegal.
DR. LUMPKIN: Resulting in missing data.
DR. DEERING: One of the things that I am hearing though is that we may be wanting to talk about privacy in a different tone of voice and with a different perspective than the privacy debate currently is. Right now, the issues are very tightly and forcefully framed in terms of your medical information and what is going to happen to your medical information. There is a lot of very necessary work going on to make sure that principles and standards and implementation, and if necessary, sanctions are in place to talk about that.
It sounds to me from the way you have painted this picture that that is at the same time too narrow and too limiting. The approach and the benefits that we want to talk about would -- I don't want to sidestep, because we will certainly get back to it, but since we are talking about benefits to communities, and we are talking about individuals using information that is not just clinical information. In other words, we are going to widen the privacy debate beyond what happens to the information about whether I'm sick or not.
DR. BLAIR: Could I inject a thought here? See if you feel that these thoughts are reality we have to deal with, because if you do, then I would avoid a discussion of privacy, but instead relate the enhancements that a national health information infrastructure could have for data security, but not get into privacy.
Let me describe why I might do that. As I have listened to all of our privacy issues and discussions, and all of the things that we have struggled to do to protect the privacy of health records, we do things with regulations and even with the proposed legislation in Congress, and despite all the things that we have done, there is one massive gap that is probably the major concern the public has about our health care information, that we are not closing with any of the discussions we're having. That is, everything to do, we still don't close the possibility of the flow to an employer that could discriminate when somebody hires.
HIPAA was trying to address that, but it still isn't closed, and all the legislation up there still doesn't close that gap. So I almost feel as if we still have to address that in our privacy subcommittee, but in terms of this national health care information infrastructure, my thought is that we could come at it from the positive approach and wind up saying, with this information infrastructure, you can wind up having controlled -- without limiting the access of the appropriate clinicians, you could control the access by role, class, type, location, whatever, that you can't do now. You could wind up authenticating documents in a way you can't do now. You can wind up having audit trails that you don't do now. You could empower the individual to be able to release the documents, which you can't do now.
So in short, you've got a positive message in four or five areas of data security that we can mention. But I'm afraid that if we get into the privacy piece, despite all the positive message we would say, we still have that gaping hole, and that is the area that the public is going to focus on, and that is the area where we don't have a good answer here in Washington right now.
DR. STARFIELD: Mark Rothstein's story yesterday, I thought it was a good one, because people are very fearful about other people knowing about their mental status.
DR. LUMPKIN: Actually, I didn't think it was, because if I was that seventh doc who was making an evaluation of someone's back pain, I'm going to ask those questions, or else I can't believe I'm going to do a good job.
DR. STARFIELD: Yes, but you have the opportunity to not tell when they ask the question, whereas if it is in the information system you don't have to answer it.
DR. LUMPKIN: But here is how I think it can enhance privacy. I sometimes think of using nomenclature which we tend to get very inexact in using it. When I think of privacy, I think of what are the things that I want to keep without sharing.
Confidentiality is what is it that can be shared. I may want to keep my information from my employer, but if the laws of the land don't prohibit that from being shared, then that is not breaching confidentiality. It is only my desire for what I want to be private versus what can be private. There is a disconnect there, and that is obviously where most of the discussion is going.
Security is how you insure that what is being kept confidential remains confidential. The problem with privacy -- and I've spent a lot of my time during my clinical career going through charts, working in emergency departments. Somebody comes in, you have a six inch thick chart, and you want to find past medical history, you want to find if they have got diabetes, some laboratory results, if they have got sickle cell, you want to find some other results. But you have got to flip through this whole 10-inch chart. That means I am seeing everything that is in that chart. It is not what I need, it is not what I want to see, and it is not what the patient wants to see.
If you had an electronic record, and I said, I need to see histories of past surgeries and the most recent laboratory results for the following things, it is there. I don't peruse anything else.
So the patient signs over authorization to me to see the pertinent information to my care, and I don't see anything else. I would argue that actually protects privacy more in that kind of scenario than it would in the paper world.
DR. STEINDEL: I was thinking the exact same thing. If we are putting a scenario in, you put in a scenario like somebody appears in an emergency room, and you phrase it something like this: the emergency room physician asks the patient for permission to access their previous medical records, because they are from out of town. You seize that permission from the patient, and because of the rules of the institution, the emergency room physician is just given permission to access records for three years back, or something like that.
It is the exact same type of scenario as you are talking about, where you give the scenario, like you are explicitly asking for permission, it is for their benefit. We can also give them the scenario on a real emergency basis, where the patient can't give permission, and how we can protect privacy on that basis, too.
DR. STARFIELD: I thought Mark's story yesterday was poignant and we have to deal with it, and that is not going to do it. You get information for three years, that mental state is going to be in there. You have got to be able when you enter the information to say, this particular information cannot --
DR. STEINDEL: And give that scenario as well.
DR. LUMPKIN: But I think that what we may end up doing with our scenarios -- and I'm thinking that we do a scenario of, this happened yesterday, and this is how the same scenario would play out in the future. So we can do the emergency department, the person comes in in extremis, they have got severe abdominal pain, and they have got a scar. The person is not exactly sure of the type of surgery, the physician isn't sure what is going on. So they contact the hospital.
The hospital happens to be on the other side of town, but it is an important case -- we can run the scenario four or five ways. It can even be the same hospital and they have to track down the chart. It takes them two hours.
Then as the person is flipping through the chart, the doctor is seeing all the data that is in there, versus the new scenario: the patient comes in, they've got the pain. I need the operative report, I need these laboratory reports. The clinician, people doing the care only see those things that are pertinent, because they don't have to flip through the chart. But they also get it right away. The decision can be made, and definitive care given.
DR. STARFIELD: Can we marry in the smart card idea as a potential protection? Suppose you've got in your chart this thing flagged, which cannot be divulged, but you are in an emergency room situation and you really need to have accesses to that protected information in the chart. In fact, you could have a situation where the patient or the patient surrogate sends the smart card and opens up locked information.
DR. LUMPKIN: Well, we don't want to get too much into detail.
DR. STARFIELD: I know we don't, but we have to.
DR. LUMPKIN: But if you are describing that situation, there may be some information which the patient wants to block. Generally, for whatever reason, that information can be blocked. But there is going to be a whole host of other information that the person only wants the doctor to see if it is important for the doctor to see it, or the other caregiver. That is going to be the bulk of it for most people.
The question is, how can we assure access only to there? The answer is that this is not a whole nefarious system. People don't have a lot of spare time unless they are really evil-minded to go fishing for data.
DR. STARFIELD: Well, medical students -- I'm not sure that is exactly right. It is probably true for most doctors who take care of you. I've sat in on consultations and watched medical students bring up peoples' records. That is not illegal.
DR. BLAIR: Actually, I think the ideas are not convergent. What we are doing is, we are dealing with not only the data security issues, but the privacy issues, in terms of access to information and the patient care process. As long as we stay at that level, then we're fine. It is once it gets up to insurance companies and who insurance companies may share the information with, that is where the exposure is on privacy that nobody is able to close that door on.
So I think that we're all on safe territory here, in terms of the examples we are talking about.
DR. LUMPKIN: Yes. I just want to go back to Mark's comment, which is what is going to be the headline in the paper and what potentially could it be. I think we have to address privacy. But I think we do stay away from those issues, such as the insurance company, because that is not under our control. The system will only do what Congress and the laws allow it to do, even though it has the potential to do more.
DR. STARFIELD: How can we stay away from insurance issues and employer issues? I think people are worried about those things, but I also think there is a whole element that -- I just don't want anybody to know this, because I don't want them to know it. It is not that I'm worried about employment, it is not that I'm worried about insurance. It is me; I just don't want anybody to know. There is a lot of that.
DR. BLAIR: But the thing is, if we get into that area, we get into a debate where it is very hard. We don't seem to have a national will at this point to close those gap holes. We have benefits here to offer in terms of the ability to improve security and privacy at the caregiver level -- well, maybe I'm missing your point.
DR. STARFIELD: My point is, I think we have to have finesse or whatever to just basically deal with all these things. It is going to take all of us to generate these things. It is not easy to do it.
DR. LUMPKIN: But I think we have to be careful. We don't want to write a tome of vignettes.
DR. STARFIELD: We can always put them in the appendix. We have to deal with the issues that people are worried about.
DR. LUMPKIN: And I think we need to focus on the task. Our task here is not to do everything in relationship to privacy. I think it is to move privacy and integrate it within the discussion.
There are ways to move that into a scenario. For instance, if we talk about a visit to a caregiver and not the emergency department, and we contrast today, which is -- the charts are all over the place because there is a storage issue, offices are small. Then someone in an insurance company requests the following information. Documents are copied and faxed or copied and mailed or whatever. Again, it is because they want five bits of information and they receive 100, because they are getting copies of records.
What information technology allows then is the minimum necessary becomes realistic in an electronic environment, when it is not really realistic in a paper environment, because it requires more cost to extract the data.
So I think we can run into a couple of scenarios that may touch upon that, but I don't think we want to go into full depth. Part of the issue on privacy is that there is a heightened concern about -- if people knew what was really going on now, --
DR. STARFIELD: Do you have some anecdotes you can give us? We have agreed that we're going to use the vignettes or the anecdotes to point out how we can protect --
DR. LUMPKIN: What I would like to suggest is that if all of us could take an hour and just outline two or three vignettes or maybe four, one in each area, and let's pull them together and see if we can pick our best four or five vignettes.
DR. HSU: I just want to let you guys know that in the recommendations sheet that we just passed out, we have four or five scenarios that we have put in there as examples. So that is a good place to start.
Additionally, I wanted to say, considering that protection of privacy is such an important thing, in the vision statement it didn't really come across. That is one of the things that we wanted this group to revisit again, is the vision statements.
DR. LUMPKIN: Did you want to say something?
DR. WOLFSON: I was just going to give a little tidbit. In Quebec, I think they are building a province-wide information system where the patient is allowed to designate certain bits of information to communicate with a certain physician, as not to be released to any other physician. So it is something we may want to look at.
DR. LUMPKIN: Well, we've got an example in Illinois. Our cornerstone information system, which is in integrated case management system. It is a statewide system. There are assessments that are performed for which, when the assessment is completed -- let's say you do a drug abuse panel, and a screen comes up and says, is this sharable. If the answer is no, and the client says no, then that data is only available to that person's case manager, and can be assigned to another case manager if that case manager leaves, but only the individual case manager sees it. The supervisor doesn't see it and the statewide system doesn't see it.
That has been in place now for four or five years. We have never received a complaint about sharing that is going on inappropriately. So it is really built in at the -- it is not at the record level, it is at the individual interaction level. Each one of these have a series of standardized questions which are answered. Then based upon that, decision making occurs and there is decision support in the whole system.
So I think there are some examples of how security can be maintained.
DR. BLAIR: We were about to start on the vignettes for the three different dimensions. Then we wanted to have a vignette for the fourth dimension.
DR. STARFIELD: What is the fourth dimension?
DR. BLAIR: The fourth dimension is integrated. At least, I thought it was, something that shows that this gives the capability to do more than the sum of its parts. I was wondering whether you think it would be appropriate if the fourth dimension be essentially national defense, something with respect to anti-bioterrorism, which we can't do now, but an information infrastructure will allow us to do things that we can't even begin to do now.
DR. LUMPKIN: I'm struggling with that, mainly because -- let me give a couple of reasons. It sounds glitzy, but the truth of the matter is, any bioterrorism event that you are going to discover is through a surveillance type system. By the time you discovered the surveillance system, it is too late.
Anthrax, you've got roughly 24 hours. Most of the time, by the time symptoms are occurring, the people are coming into the hospital and are beyond saving. So it is the kind of thing where it is going to take somebody making a leap of faith, a clinical judgment, because you've seen two or three cases, to blow the whistle, that wouldn't be picked up.
However, the water problem that they had with the crytposporosis in Milwaukee could be picked up, and might be picked up by this kind of system. But what we haven't run through is, this rises a whole bunch of privacy issues. We could try to wrestle with a scenario like that.
DR. DEERING: By the way, these scenarios that are suggested begin on page four. But one of the ones that were picked up here that is certainly in the public mind right now is the medical error issue. That is one that resonates very much, that is perceived very much to be in the individual's interest, that is something that is something they can understand. It relates to them, they can understand how the sharing of information about their care in that instance could specifically be of value to them. So just picking up again in our desire to have this be something that the public can relate to.
DR. LUMPKIN: But the medical errors I think ought to be integrated into each scenario. For an example, the personal health scenario. Someone is taking a Wayfarin, blood thinner. They get a prescription. It is filled with a generic. The information gets entered by the pharmacist on their own personal record, and a warning flash is up. You now have generic Wayfarin, do not take your old pills, throw them away, because there have been problems where people get one prescription, and then they go to a pharmacist to get it filled. They have two different pills, so they think they are supposed to take both of them, and end up doubling their dose.
So it is a kind of thing where there is important information that can be given, or there is a medication change for which there is a different schedule of how you take it. We can even take a scenario of someone who is on multiple medications, who have to take it during certain times, and their own personal health chart would help them figure out a way to modify their menus, so they can eat their favorite foods at the same time as take the new medication.
But I don't think we should just do a scenario on errors. I think the scenarios really should be from the various dimensions.
DR. FRIEDMAN: In terms of the scenario focusing on value added from the integration of the three methods, I think one idea that could be really attractive to incorporate and to build upon is the common metric that Michael talks about in that paper that was in our material, common metric across clinical trials, across clinical information, across community health, across personal care. I think that is something that could show the value of the integration, and could also -- and perhaps it would help people also understand the choice among alternative therapies.
DR. LUMPKIN: I'm just trying to see if that is the same thing I was thinking about. Are you talking about the global burden of disease methodology?
DR. STARFIELD: That is the method that is used, but it doesn't have to be that metric.
DR. LUMPKIN: Right, just the idea of a single metric.
DR. FRIEDMAN: Yes, it doesn't have to be that. Just some kind of a common metric that can be used for looking at outcomes, both clinical and community health center, et cetera. I'm not saying it particularly well.
DR. LUMPKIN: I'm actually struggling with the concept about an integrates scenario. If we are describing dimensions in an integrated system, then we have an integrated scenario.
DR. BLAIR: I sort of feel like even if we struggle a little bit to try to define one that is compelling, and that is saying this is the type of thing that we could do that we couldn't even begin to approach to do without that infrastructure. So I feel like we really ought to try to find something that is an example of an integrated -- or maybe what you are trying to say is that you feel like all the dimension oriented ones still require the integration? Is that what you're trying to say?
DR. ZUBELDIA: How would the integrated dimension be any different from a scenario that covers all three dimensions?
DR. WOLFSON: I'll say something a little bit from a different angle. In Canada, we have a committee that I now sit on that is doing the successor to the health infrastructure report that is cited in here. We are engaged in developing a 10-year vision, and then the next two years of specific concrete actions to get to the deputy ministers of health by the summer.
A lot of the discussion apropos of this last few minutes on integrated is to say -- Canada is obviously a very different context. It is one thing to talk about patient care, and that is what ministers are going to want to have in order to sell the vision to the broad public in Canada, but most of the benefits are seen in Canada from what you are calling integration management. But it is a little different, quite a bit different, because theirs is a single pay range province.
But to get a handle on the continuum of care and how people flow through, to be able to step back and get the kind of health services utilization and patterns, those are seen as crucial benefits. They are not seen as salable politically, because it is just helping the guys in the ministry of health or the regional health authority manage the system better, although it obviously plays on the question of accidents and inadvertent errors.
Those are the two main dimensions that we are thinking, as opposed to the three where you have personal, clinical and community. We are assuming that there are personal, clinical things. All that is going to be a critical feature of having an integrated information system, but in others it is going to be the management of the system.
DR. BLAIR: What if we take the benefit from the health standpoint and show how that can go -- we have tended to think of public health in terms of gathering information so we can analyze. But now we have a vehicle where we can expeditiously disseminate that information very rapidly back to the immediate caregiver within weeks, days, maybe even hours, which we can't do now.
Maybe if we developed the scenario -- and I'm not aware that anybody has ever done that before, then that not only ties the benefit in terms of improving public health nationally with the ability to make that improvement, because the infrastructure is there virtually within days or weeks instead of years.
DR. STEINDEL: I'm thinking about something like this. If we have the caregiver dimension that is feeding rates for certain cancer to public health, all of public health nationally, and we in public health analyze that data, and then we all of a sudden see that people who lived in a certain area during a certain time period are at increased risk for this cancer. We would not get that information today without a great deal of struggle. But with an integrated system, we could start analyzing this data globally.
Public health sees that. We then can feed out a warning to some sort of warning server.
DR. BLAIR: Or a protocol.
DR. STEINDEL: Yes, and when a person is accessing their personal information, it checks that server and it says, ah-ha, you lived in this area at this time, you may be at increased risk, see your caregiver.
DR. BLAIR: And here are the tests you should follow to determine whether or not you are at risk.
DR. STEINDEL: We can refine the scenario. You can see why I threw it out off the top of my head. I'm saying this is not something we should do. But you can see the type of scenario that needs to be refined from a medical and public health point of view, in terms of what incidents we would look at. But I can see that being the type of integrated system.
DR. LUMPKIN: Right. I think that each scenario has to demonstrate from a different perspective the advantages of an integrated system. An infectious disease model would work better, and I think a lot of us would be more comfortable with that.
I think we want to have a scenario well enough contained that we can adequate control the privacy component of it. What I mean by that is, an infectious disease model -- let's say, we have had a recent incidence in East St. Louis, where somebody working at a restaurant came down with hepatitis-A. You've got two weeks in which you've got a window to treat with immunoglobulin.
In that scenario, someone may check their personal health record and it would say there has been some risk and possible question, did you eat at the following restaurant during this period of time. If the answer is yes, then you need to see your caregiver.
I think we can pull some of those scenarios in, and then explain to people how privacy can be protected. The problem with cancer -- and let me just use that as an example, is then you have to get into the whole thing about how cancer registries ar protected by law, even though you are mandated to reporting, you are not giving out more information than isn't already mandated in the states that have cancer registry, which gets into a whole ball of wax. It is extremely complex.
So I think we want to keep a fairly tight controllable scenario in which we can illustrate the privacy issues and so forth.
DR. STEINDEL: What I was reaching for is something that is more long term, which is why I didn't mention the infectious disease scenario. But we can just as easily go with an infectious disease scenario, if it is the same model.
DR. STARFIELD: And in my book on primary care, I lace it with personal anecdotes. It took me absolutely forever to come up. It is not easy to do, and I think we need help from staff.
One of the things that might be done is to go through some books on privacy, not what we need to do on privacy, but some of the end uses of privacy, some of the books on errors in medicine, and use those, build on those.
DR. ZUBELDIA: I can think of the wrong way to do what Jeff has said, is by having people register when you go to a restaurant, so you can be notified.
DR. STARFIELD: We're going to need help to do that.
DR. STEINDEL: Maybe some stuff that comes up tomorrow.
DR. LUMPKIN: I think we want to be careful that we don't focus it too much on privacy.
If we can move to another area that I think we need to have some discussion on. We are all going to try to put together an outline of some scenarios, so we can start building a bank of them that we can use to try to pull the three or four scenarios.
The second area that I think is an overarching discussion is, we are using in a fairly inexact way the terms data, information and knowledge. I think we are losing because of that some of the intent of emphasizing the importance of the system, but also what we hope to get out of it.
DR. STARFIELD: We had a meeting on that a year or two ago, on this terminology. We got a history. It is somewhere in one of these blue books.
DR. LUMPKIN: We had some discussion on that in this work group. We started developing this queue. Then we went away from that, and we want to the dimensions. I think that was a good development.
One of the things that I use to describe the presentation that I gave yesterday and the one I gave on 2010 was pushing knowledge to the point of service. When I use that, I use that in the sense of knowledge management. You call up Gateway and you talk to the technical service area. You give what your problems are to the person who is at the other end of the line. They are not the best skilled technicians at Gateway, or with computers. But they have in front of them a computer system, where they type in your complaint.
What they have done is taken the five or six best technicians and they say, you've got this problem, what do you do. They use that, and they take that knowledge and they make that available to the technician, who then types it in. I've got this problem. They say, try doing this. Take your mouse out and plug it into the keyboard slot, take the keyboard out and plug it into the mouse slot. Then when you do that, they see some information. They know that because they have been doing it 100 times, but the best says, the next step is to do this.
That is knowledge management, where you take the best decision makers and you give that information, you give that knowledge to the people on the front lines.
So when we talk about creating a knowledge base, it is really a set of rules that would test the data that is put in to allow the best decisions to be made.
DR. BLAIR: Is anybody capturing that? I think that is a very concise definition that the knowledge base is a set of rules.
DR. DEERING: It would test the data that is put in, and then -- I didn't get the last part of it.
DR. LUMPKIN: To assist in the decision making. So in our system cornerstone that we have in Illinois, someone answers all the questions in the first general assessment. At the end, they have other modules they can go into. They can go into a WIC module, they can go into a lead module, they can go into a whole host of things. But if they answer question number 27 yes in doing the scenario, the system would say, you answered this question this way, you should do a substance abuse or a domestic violence assessment panel. The case manager would say thank you, fine, I'm not doing that today because the patient is already distraught and I need to develop a better working relationship. It doesn't mandate it, but it does give that decision support.
That is what I think we want to try to capture as being an advantage. But we have to be careful about how we use terms.
Now, the flip side of that is that the public and the reader will not understand or necessarily follow the hierarchy between data, information and knowledge. So I think we need to try to develop some different terms to describe what I was just discussing as being the knowledge management and knowledge base.
DR. ZUBELDIA: We may have to do a little twist in the knowledge base. We use one that we call CIBU, to answer customers. It not only builds from the knowledge of the experts that have been receiving the database, but also from previous experiences from others, support people. At the end of each column, the support person has to say what is the solution to the problem. If it was the solution to the problem, the next time somebody asks for the same problem, that would pop up as the first few choices to resolve the problem. So it builds on itself to create the experience.
DR. LUMPKIN: And in the clinical setting, what that implies in the clinical setting -- when I was training in medical school and residency, they had a saying. In Illinois, when you hear hoofbeats, you think of horses, you don't think of zebras. So when you are doing your differential diagnosis, you always pick the thing that is most likely where you go first.
A knowledge base in a clinical practice would, as you start to see new things develop, like beta strep as an association with vaginal strep infections associated with poor fetal outcome, that is something that is relatively newly coming into the awareness. But a knowledge base would have picked that up much earlier, because you would have had strep show up. You would have said, not an unusual finding, outcome is not good. You wouldn't make those associations that may occur over a period of time or a period of career.
So individual clinicians can actually see through a knowledge base their own choices change over time on the outcomes, and the population that they are serving.
DR. BLAIR: Should we extend our scenarios to reflect a change in the role of certain caregivers that can be enabled by such an intelligent information infrastructure? We are beginning to wind up capturing the knowledge base, a certain amount of expertise, in certain folks that are going to be looked at to help create and update the knowledge base.
There are others that don't have to have those skills that could begin to disseminate caregiver support, maybe with less skill. Should we get into the whole idea that this may begin to change the roles of different caregivers from a positive standpoint? Maybe we will have nurses and physician assistants being able to do much more than they are able to do now at a lower cost, while at the same time we have others that are improving that knowledge base and concentrating on that at a faster rate.
I don't know if you can separate that.
DR. LUMPKIN: My response is that while that may be an outcome, it is not something that we want to discuss in this document, because the biggest battles that you see get sensitive.
DR. STEINDEL: I have a feeling that we need to stay a little bit away from that slippery slope, because we are talking about the headline that you are going to see in USA Today. Even if we suggest any hint of this, the headline is going to be, federal advisory panel suggests computerized doc in the box.
DR. BLAIR: You're right. Never mind.
DR. STEINDEL: Whether we do or not.
DR. LUMPKIN: I guess my thought is that we probably need to have some discussion of this. I don't know if it would be an appendix. We can integrate these into the scenarios. We'll have to think about how to do that, and when we start working on scenarios, we can beef those up using those components. But I do think that we should be fairly consistent at using -- when we go through the document, to make sure that when we say data, we mean data, when we say information, we mean information, and when we say knowledge, that is what we are talking about.
DR. BLAIR: What is the difference in the definition between information and data?
DR. STARFIELD: We should go back to that previous meeting, because we've got notes on that.
DR. BLAIR: All right.
DR. STARFIELD: Maybe it was a visions meeting. I don't remember.
DR. LUMPKIN: Well, just roughly, data is facts, and facts are interpreted by a human being is information. Then from where you go there and how to make decisions or decision making is things like knowledge.
DR. STARFIELD: I'll try to find it.
DR. WOLFSON: A very simple line is, data plus analysis yields information. Action, decision, use, internalization.
DR. STEINDEL: I'm wondering if we should in the document itself, in our vision, we should suggest that NHII can be used for knowledge, but it itself is not a knowledge server. This could be a value added component that is put in by outsiders.
DR. LUMPKIN: If we say that NHII is a sum total of standards and technologies, knowledge management would be one of the technologies. We probably also need to say that the development of NHII doesn't have to occur as a turnkey process, that it will be built incrementally with different pieces, and unevenly.
DR. WOLFSON: On that point, when you were showing your eggs yesterday with the different things that in the pool, I wrote a little note to myself that those seem to be all the data kinds of things, and there wasn't anywhere in the sequence of overheads a process that -- and I appreciate the sensitivities of this, but certainly we think about it a lot in Canada. It roams over the data, aggregates it, analyzes it and turns it into patterns, whether they are hot spots or one or other kind of morbidity or whatever, distributions of morbidity or mortality outcomes by site or the type of procedure.
DR. LUMPKIN: That is a good point. Let me think about how to demonstrate that.
DR. WOLFSON: That is not the only kind of example.
DR. ZUBELDIA: Individual researchers would also do that on their own.
DR. WOLFSON: And certainly in the discussions I have had in Canada, we want to systematize the process that takes these carefully put together data sets, extracts on a regular basis information that feeds back at all levels, whether to a chief of surgery in a given hospital, all the way up to the deputy minister of health. It is overall system management.
DR. LUMPKIN: Conceptually, if we can think about that universe of health related data, which is that big circle, that one superimposes over that another universe, which is health information. I think that is where you get to trying to demonstrate that from all this data you can extract information, and from the information you can build knowledge.
I'll just have to figure out some way to conceptualize that. I'm not sure that we -- I think we have enough here in the document that talks about how we would use that data, so that I don't think that is a criticism of the document or of my presentation. I'll figure out a way to fix that. It's a good thought. Thanks.
We have had a walk through the scenario. The barriers.
DR. STARFIELD: We don't need barriers, I don't think. What are some of the main barriers? We dealt with the privacy things. What are the other barriers?
DR. FRIEDMAN: I think it would be helpful -- again, this does not need to be lengthy, but I think for a non-technical audience, it would be helpful to point out bullet points about why you can't do what we are laying out as the scenarios. I think what is obvious to us, lack of integration, lack of data, et cetera, I think is not necessarily obvious to other people.
DR. STARFIELD: I thought you meant barriers to the NHII.
DR. FRIEDMAN: Yes, barriers to achieving a future vision.
DR. LUMPKIN: In the document on the -- for lack of better term, computerized patient record that was presented yesterday, was an interesting little paragraph on the using of the UPC, and how the technology was available 10 or 15 years before they actually implemented using UPC. The real reason was because they had developed standards.
If we had more time, what I would suggest -- and so I'm going to suggest that we do this electronically -- is that we try to develop a brainstorming session on what the barriers are, and then to hone down that list. I think if we start feeding off of each other's thoughts, we can develop a fairly comprehensive list of barriers, that we can then try to sum up.
An example is, health care is basically still, despite managed care and all the other changes, most health care is provided in relatively small offices. So when you talk about trying to have market forces change, there is no real large concentration of capital.
When you had standards in information systems and supply and coding developed by the three big auto makers, and they told their suppliers, either implement it or we don't buy from them, there is no one to do that in health care. So that becomes a barrier, because it is so diffuse.
Those are the kinds of things I think we can talk about as barriers to the development of the NHII.
DR. BLAIR: I would probably like to suggest that we give ourselves a little bit more latitude than just using the word barriers. If we use impediments, things that slow down, deter or sidetrack, a barrier at least in my mind is an obstacle, a showstopper.
DR. LUMPKIN: Yes, barriers and impediments.
DR. STARFIELD: You want to use barriers still?
DR. LUMPKIN: Sure, and impediments.
DR. BLAIR: Because impediments kind of includes barriers, but maybe not.
DR. LUMPKIN: Okay, we can use impediments.
DR. STARFIELD: Barrier is just too strong.
DR. LUMPKIN: So I think that maybe over the next two weeks, we can start sharing some emails on developing a list of impediments, which will then populate section three, which is what we need to do. I think that will help us then fill out the first three pieces, which are the key pieces that we don't have. I think much of the rest we have already included from the outline.
DR. STARFIELD: I was looking, Jeff, at your document, and I didn't find a section that just said impediments or barriers or anything. It is sort of all through here, isn't it, rather than identified?
DR. BLAIR: Yes.
DR. STARFIELD: Did you want to do the impediments as scenarios as well or not?
DR. LUMPKIN: No, I think they need to be described by short descriptions.
DR. DEERING: By the way, I met Karen Frawley, who raised this issue about the integrity of the knowledge base yesterday. She was explaining in more detail about something that we have talked about before, and was mentioned in some of the documents that you have here, but hasn't come up again today.
It is an issue of an entirely different order, namely, as she explained it, one of her concerns was the issue of the digital divide also, of who gets -- what does the development of an NHII do to inequities in health care, inequities in health status, inequities of access to technology.
Then she also elaborated on this issue of general quality control, which isn't just quality control of the data per se, but the quality control of the various chunks and piles of data, information and even when it gets into the knowledge delivery system.
So that isn't exactly a barrier or an impediment. It is something that would have to be dealt with as a consequence of having even accomplished your scenario under the best of circumstances. So I don't know if you would want to consider those issues and where you would place them.
DR. STARFIELD: Do we want to highlight a benefit as increased equity?
DR. LUMPKIN: There are certain comments like that that I think we want to put on a Post-It, and after we have the first draft to go back to, to see where we can address it.
The reason why I say that is because if we have this vision, all the data shows that if you are African-American, you are less likely to get coronary bypass surgery and less likely to get reperfusion, and the only things you are more likely to get than the white population are more amputations. There have been various studies that have shown this.
These patterns in the world of the NHII will become very apparent. They can become apparent by provider or by community, and would enable a process of using the knowledge management system to determine the cause. Are you seeing where the knowledge management system is saying this patient should have a bypass graft, and disproportionately the clinicians are disregarding the knowledge management system? Or are there other factors that may not be completely apparent.
That is not necessarily something that we want to talk about in the document, because it will make a number of people very uncomfortable, particularly various physicians who think that Big Brother will be looking over their shoulder.
But these are the kind of issues that if we come back to and think about, can perhaps we then, once we have gotten the document together. But that is actually how the NHII can help us address racial and ethnic disparities in health care.
DR. WOLFSON: One of the things that I have certainly found most difficult in the Canadian setting is the business about consumers or individuals going to the Web and getting health information. The phrase that folks are starting to use is trusted sources, how do we get the Good Housekeeping seal of approval. That seems to be a bottomless pit of complexity and difficulty, particularly when anybody can put anything on the Web they want, including -- I don't know if ginkgo biloba is a good or bad example, but all these alternative kinds of things. They are very difficult to grapple with.
We are thinking that we have to include even for 10 years out paper-based access to information, whether it is libraries or whatever. It can't be all electronic, because not everybody will be able to access it.
DR. ZUBELDIA: That is compounded with the recent survey that -- I think it was seven out of nine health related websites don't comply with their own privacy policies.
DR. LUMPKIN: Are there any other Post-Its that we want to put up? The digital divide is one.
DR. ZUBELDIA: Between the haves and the have-nots. If you don't have access to your own personal dimension, how is this going to affect the whole process.
DR. LUMPKIN: Any other things that we want to maybe make sure that we think about to come back and check?
DR. HSO: One thing that came up in the Canada paper is the original infrastructure, and he suggested the IHS infrastructure and its relation to the NHII.
DR. LUMPKIN: I think that -- let's add one on racial and ethnic disparities. Let's include a Post-It for socioeconomic.
DR. BLAIR: When we add those in, do we want to add in the emerging new methodologies that enable us to get better measurements, not only of these disparities, but of different diseases?
DR. LUMPKIN: What was that phrase you described them as? Emerging --
DR. BLAIR: Emerging methodologies to be able to measure the status of public health in a manner where you could not only begin to break it down by different diseases, accidents, injuries, environment and geographies, but also by different racial and ethnic groups or underserved populations. These methodologies would use an information infrastructure to be able to help us manage public health and make sure that we are reaching underserved populations in a manner that we can't do now.
DR. STARFIELD: For example, a methodology that tells you about the health of a person rather than disease by disease. Otherwise, a person may have four diseases, and you look at the person as diabetes and hypertension separately, or you can look at it as a composite that takes into account comorbidity. Is that the kind of methodology?
DR. BLAIR: That is another one. I don't have a public health background per se, so I just had a chance to read the briefing book, and I was struck by the methodology that was developed in Los Angeles County. So that was what triggered my thought.
DR. DEERING: I have a process question here, in addition to the specific activities that we are going to do around the scenarios and the barriers. Would it be helpful, or would you want to help us by going through some of the things that we tried to capture on paper, and without trying to rewrite, just indicate whether this is a keeper or a Post-It note or a reject? Again, we have been trying to capture different things that have gone on in the committee from time to time, and it may be now that we have revised our outline and approach.
There is still stuff that can fit in somewhere. There is stuff that we no longer need it all, because we have decided to deal with it differently. I'm just trying to think when we engage this writer, how to help her sort through and prioritize among the content bits and bites that we have been accumulating here.
DR. LUMPKIN: It might -- I'm just wondering here --
DR. DEERING: I wasn't thinking of going through it step by step. Fax might even be better than email, old-fashioned fax, just write over it, or we could have a three-letter code. One, two, three. One is yes, keep, two is Post-It, three is no, we no longer need this for now. Anything like that, so that we could help you match your methodology just perfectly.
DR. STARFIELD: It is hard to do that. Basically, I think we are talking about reorganizing this stuff. A lot of these things might fit in, but not in the context in which they are in here.
DR. DEERING: I hear that. I'm not suggesting that we look at it in terms of keeping this organizational structure. I am thinking of it as bits and bites, chunks of information and suggestions that have been offered in the past, that we have tried to put in here.
DR. HSO: For example, definitions for the NHII. We have put in three or four different definitions that we have heard in these meetings over the past two years, and we have to make a decision as to which one it would be, or maybe it is a combination of them.
They were in the outline as well as in the recommendations. We have highlighted some of the conversations that we have pulled out.
DR. FRIEDMAN: I do think that makes sense though, starting with this, rather than necessarily -- I'm sure we are going to want to port over, but I think before we think about the porting, we need to think about the structure and the balance here. I am really concerned about trying to get something that is readable and attractive, attractive in terms of reading, but also attractive visually.
DR. STARFIELD: But I think if you could highlight these areas that are problematic for you, --
DR. FRIEDMAN: That would be very helpful.
DR. HSO: We made a start on that in the recommendations. In the outline itself, under different sections there will be three or four different definitions.
DR. STARFIELD: Where is that?
DR. DEERING: Under recommendations and suggestions.
DR. STARFIELD: Is this something you developed after the meeting yesterday?
DR. GREENBERG: On Tuesday.
DR. LUMPKIN: So if people have an opportunity. they can go through the full outline and note the things we don't want to port over to the new structure. If we can get any other items that are not included in here, where maybe some decisions need to be made, or restructuring. I think that we -- particularly in areas where it may be useful for us to try to draft some language, I'll work on the definitions.
Each one of us is going to try to develop a few scenario outlines, scenario thoughts, not that you have to write a full page scenario, but it may be a couple of sentences that would describe something that you think would help illustrate an integrated approach from you on community and personal health dimension.
DR. BLAIR: Could we maybe tag this a little more specifically, so that we don't all wind up giving a caregiver scenario, for example, or most of us do? Maybe we could just make sure that we have got one or two folks that would work together on a personal health dimension and one or two that would work on the community health, so we know who is doing what?
DR. LUMPKIN: Yes, I think that should be the second step. The first step is to develop a list of ideas for scenarios, and then a second step would be to group them.
DR. STARFIELD: But Stan could help us with coming up with ideas.
(Simultaneous discussion.)
DR. DEERING: Section E of the recommendations paper has some scenario ideas that we pulled together from things that have been mentioned before. They don't precisely map just to the dimensions. They seem to be a little bit more cross cutting, but they may trigger some ideas.
DR. GREENBERG: I don't remember whether they talk about privacy or some of the issues you talked about, but there are some very good scenarios in that Ros Lasker paper that was part of the 45th anniversary symposium volume, that are specifically public health oriented, but how the NII could advance public health.
DR. DEERING: Where is that paper?
DR. GREENBERG: If you don't have the document, it is in the 45th anniversary symposium documents. They have got 10 scenarios in there. NII supports population health in the future. There is no point in re-inventing the wheel.
DR. LUMPKIN: I remember this.
DR. GREENBERG: Making the powerful connection between the health of the public and the national information --
DR. LUMPKIN: Very good.
DR. GREENBERG: I could send that to everybody.
DR. STEINDEL: I would like to ese some of the scenarios and some of this documented -- stress this in private health.
DR. STARFIELD: What is private health? Personal?
DR. STEINDEL: The individual caregiver giving health of the person as well as the population. The scenarios and stuff have to stress both of those dimensions with the public.
DR. LUMPKIN: What we are going to do is perhaps, since we are talking about from three dimensions. Since I have been left with the personal one in the past, I guess I'll do that.
Who wants to do the caregiver? Jeff, you worked on that.
DR. BLAIR: Sure.
DR. STARFIELD: I can work with you.
DR. BLAIR: Thank you.
DR. LUMPKIN: Then the community?
DR. FRIEDMAN: I'll do the -- I'd love to have Barbara, or --
DR. LUMPKIN: The process will be that once we have got the initial ones sketched out, it is going to be very important for the rest of us to look at -- because of the integrated nature, how we can be sure that it covers enough of the other aspects.
So we are going to be working on those. We are going to be developing a list of impediments, so we'll need to also do that over the next couple of weeks through email. We have a listserve?
DR. DEERING: Yes.
DR. LUMPKIN: It is probably time to start using the listserve, particularly since that may be the only way of --
(Simultaneous discussion.)
DR. LUMPKIN: So if we could just get a test message, and then we can respond to that. For some reason, I cannot send email to Mary Jo.
(Simultaneous discussion.)
DR. LUMPKIN: If the test message would just be a reminder of what we need to do.
DR. BLAIR: What is our due date on these scenarios?
DR. LUMPKIN: Given our time frames, we probably need to do that within the next two weeks.
DR. BLAIR: Is it possible for us to get the book with the scenarios within that time frame, so we can plagiarize?
DR. LUMPKIN: Okay, we'll get them, yes. The last item we have to cover is the 50th anniversary symposium. At that symposium we will present our draft of what we have come up with. By then, we plan to have a writer on board. We'll have enough of our thinking to present it. This will be the unveiling, opening up of the public comment period, what our thoughts are, so we can get into that phase.
The question is, how do we want to present it, and how do we want to have a response at the symposium? The options are, we can do a presentation very much along the lines of what we did at 2010.
DR. BLAIR: How did 2010 go, or was the weather too much to even comment?
DR. DEERING: No, we had a full house. In fact, we got some terrific feedback. Those who schlepped through the blizzard gave rave reviews, and the room was very full. We had 1600 all together.
DR. LUMPKIN: But again, it will also be a select group who will also be present at the symposium. We have allocated how much time for this?
DR. GREENBERG: About an hour and 15 minutes, hour and a half.
DR. LUMPKIN: We can kick off the discussion by having either a reactor panel or a reactor speaker, and then opening it to the floor for comments. I wonder if we might want to select a reactor speaker, because that may allow us to -- if we have a panel, that may eat up all of the time.
DR. GREENBERG: I think I sent an email that it would be great if we could get Ted Shortliffe.
DR. DEERING: I noticed that the 21st century slot specifically specifies that it is an interim report. I'm wondering if under ours then, you would want to specify draft or something like that.
DR. LUMPKIN: Sure.
DR. FRIEDMAN: Ours should probably say draft interim report as well.
DR. GREENBERG: Since it is interim, do we need draft as well?
DR. LUMPKIN: Let's see where we are.
DR. GREENBERG: But I think the NHII does need some adjective, interim.
DR. LUMPKIN: Any other suggestions for our reactor speaker?
DR. STARFIELD: We've got reactors at the beginning, before the NHII.
DR. BLAIR: I'm not familiar with that phrase. What is a reactor speaker?
DR. LUMPKIN: That would be somebody who was not a part of the committee, who is from the outside, who is reading this a week or so before the conference for the first time. So they would have extended comments, as opposed to the audience, who will react giving shorter comments.
DR. STARFIELD: The discussions at the beginning are on what? Are on the national committee?
DR. LUMPKIN: Yes.
DR. STARFIELD: Over 50 years?
DR. LUMPKIN: Yes.
DR. GREENBERG: What were you asking about?
DR. STARFIELD: It looked to me like we were having reactions at the beginning and then the presentation of the NHII>
DR. LUMPKIN: Right, it is the past into the future, the 50th anniversary. So we are looking at past chairs and important others to comment on how important the committee is, and then moving towards the future with the two reports.
Any other suggestions for potential reactors?
DR. STARFIELD: So you had Ted Shortliffe.
DR. DEERING: The only other thing that comes to mind is including Don Detmer on the reactor panel, because he oversaw the development of the first concept paper and went specifically to England to look at how they are influencing the NHII, though whether from a protocol point of view, that is an appropriate thing to do or not.
DR. STARFIELD: That sounds interesting. What about someone from Canada?
DR. BLAIR: Or Australia, or both.
DR. STARFIELD: One of the things that we are dealing with is the European Union directives.
DR. LUMPKIN: My thought on that is that -- it is like what happens with my legislature. The first question they ask is, what do they do in other states, and then when you tell them, they say, but Illinois is different. So I think we do need to have someone from the United States.
DR. FRIEDMAN: Another possibility would be getting somebody for example from a Hewlitt Packard, or somebody from a major employer or who has been with a major employer or somebody who is forward thinking, and who has a population to deal with, or also has caregiver issues to deal with.
There is somebody who came both to the 21st century and our NHII panel on 2010 who used to be an HP guy, and then he went to the Washington Business Group on Health, and now he is with our Group Insurance Commission. He and several of his colleagues are fascinated by the NHII in terms of its potential.
DR. STARFIELD: Who was it?
DR. FRIEDMAN: Hunte.
DR. BLAIR: If I may comment on that, Ted Shortliffe just chaired a panel for health care on the Internet. That was a diverse panel both of technology people, industry people. He presented the report at Amia this year and he did that as part of the NII initiative. So he has actually looked at this. I've been looking on the Internet for it, and I haven't found it yet. So he has just chaired a panel that has looked into a lot of these things, and he would be very good.
DR. LUMPKIN: Well, he would be our first choice. What about somebody -- when you raised that, the thought came, what about somebody like Woody Meyers? Woody Meyers used to be health officer out of Indiana, then New York, and now is head of medical affairs or whatever for Ford Motor Company. But there is somebody who is -- and Ford has been doing a lot with measurement of quality and so forth.
DR. DEERING: And they just distributed a personal computer to every employee.
DR. HSO: Just to add to that, John Glasser, he is the CIO at Partners, and he has worked on that panel, too, for producing that report. He is quite well known in the CIO world, in terms of the work he has done.
DR. ZUBELDIA: Or Jim Clark from Netscape. He is a visionary who is involved in health care.
DR. JACKSON: I'm sorry, I didn't hear that name.
DR. ZUBELDIA: Jim Clark.
DR. JACKSON: He's where?
DR. LUMPKIN: Healthion, Netscape.
DR. LUMPKIN: So what we need to do is try and see if we can get an answer from Ted, and if Ted is not available, then I'll call Woody, and if Woody is not available, then we'll go to either John Glasser or Jim Clark.
DR. GREENBERG: Does anyone know Ted personally? Jim Scanlon got him for the Data Council, so maybe we could ask Jim if he -- because he is certainly involved in this symposium.
DR. DEERING: Another nitty gritty question, because we will be moving ahead to look again at this writer, the question that comes up is, how many pages are we aiming for, because that is how you hire people roughly. So for this -- not the appendices and all that, because that I think we can probably put together in 50 pages?
DR. GREENBERG: No, 20. I think 20 is what we're talking about.
DR. LUMPKIN: I think the goal is 20 pages. I think the appendices will shoot for -- in the final document, not for the interim.
DR. JACKSON: So in the presentation here, you are looking at trying to get a particular reactor person rather than a panel?
DR. LUMPKIN: Correct.
DR. JACKSON: The panel presenters themselves, who does that consist of?
DR. LUMPKIN: We know who did it at 2010. Do we have volunteers for the personal health dimension?
DR. GREENBERG: Did you do the intro and that?
DR. LUMPKIN: Yes.
DR. STARFIELD: Where are we, on the 21st now?
DR. LUMPKIN: No, we're talking about who is going to do the presentation. The way we did it at 2010 is that I did the intro and then I did the personal. Dan did the community and Jeff did the caregiver.
DR. FRIEDMAN: We heard from so many people. We heard from you, Don, Judy Miller Jones, Ronnie Blankenbecker, John Eisenberg. Maybe it would be easier on the audience if you just did 20 minutes on the whole thing. Then it would be integrated, all of us wouldn't have to be popping up. You would be tired, but we would be fresh.
DR. GREENBERG: There's pros and cons, I guess, since it is the committee's anniversary symposium, having a little bit more involvement of its members, which is the advantage of sharing the presentation.
DR. JACKSON: Just hearing the voices makes a difference.
DR. STARFIELD: It depends what we want to do with this If we want to showcase the effort, then it makes sense for you to do it. If we want to showcase the committee --
DR. GREENBERG: I guess it's up to the committee members. We're not going to force you into having the limelight.
DR. STARFIELD: While we are thinking about that one, I have some concern about having only one reactor.
DR. LUMPKIN: If we do it with one presentation for 20 minutes, then we can't have two reactors and still fit that within 40 minutes.
DR. DEERING: One of the reactors should certainly try to be able to represent the public. I don't mean as a consumer advocate officially, but emphasizing what it means for individual wellness, individual health, what are the individual benefits. In other words, we don't want people who are just looking at it from a professional and technical point of view. It would be nice to have some words come out of the reactor panel who can say that from the point of view of improving health.
DR. LUMPKIN: John Rathner, AARP. He is on the board of the national quality forum and also the Foundation for Accountability.
DR. STARFIELD: What's his last name?
DR. BLAIR: Rogher.
DR. LUMPKIN: He is into it enough, but he wouldn't fit as a technology person. That might be an interesting reactor.
DR. BLAIR: Question. You can tell by my mulling this over whether this is even appropriate to ask, but let me get it out and get your thoughts on it as to whether it is or not.
Some of the Presidential candidates are considering this topic as part of their platform in terms of health care, some of the parties are. There may be individuals that are pulling together these platforms. Would they be appropriate among the reactors?
DR. LUMPKIN: No. We want to stay as far away from the election as we can, especially since by June the conventions would not have been held, so you can't even be sure you would get the right two sides there. It would just be a mess.
Okay, I think we need to be upstairs. Thank you.
(Whereupon, the meeting was concluded at 9:55 a.m.)