[THIS TRANSCRIPT IS UNEDITED]
National Committee on Vital and Health Statistics
Workgroup on National Health Information Infrastructure
November 12, 1998
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Room 505-A
Washington, D.C.
Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway #160
Fairfax, Virginia 22030
(703) 352-0091
PARTICIPANTS:
Workgroup Members:
- Jeffrey S. Blair
- Daniel Friedman, Ph.D.
- Richard K. Harding, M.D.
- Clement J. McDonald, M.D.
Staff:
- Mary Jo Deering, Ph.D.
- Sandy Haydock
- Hetty Khan
- Meade Morgan
- Dena Puskin, Sc.D.
- Steve Steindel, Ph.D.
P R O C E E D I N G S [8:05 a.m.]
DR. DEERING: Dan did ask me to go ahead and start in his absence. I have almost ten after.
I am Mary Jo Deering and I am the HHS staff, the lead staff, for this committee, which is normally chaired by Don Detmer and his stand-in is going to be Dan Friedman from Massachusetts.
DR. STEINDEL: And I am Steve Steindel from the Centers for Disease Control and Prevention, staff to the committee.
[Introductions off microphone,]
DR. DEERING: Actually, I need to look to my NCVHS. It may not be that two HHS staff alone can really do anything, in the absence of an official committee member.
Brian, I got your first name but not your last name.
MR. THIEL: Thiel, T-h-i-e-l.
DR. DEERING: And I didn't get your name.
MS. SHORT: Helen Short.
DR. DEERING: And which alliance were you with?
MS. SHORT: [Comment off microphone.]
DR. DEERING: Good name.
MS. KHAN: Hetty Khan.
DR. DEERING: Hi, Hetty. How are you? Are you here for Marjorie?
MS. KHAN: She may be coming but she may be a little bit late.
DR. DEERING: Well, we decided in the absence of any NCVHS committee member that we really can't do anything other than talk informally among ourselves. So, this is going to be a dialogue among anyone who would like to join on an entirely informal and unofficial basis, as far as I am concerned.
Since that is so, then maybe I will even put the burden on you folks, who are around the edge. It gives us a wonderful opportunity to tell us what you are interested and get that, at least, into our knowledge base, so to speak.
I certainly know you but I am glad to here again.
DR. KOLODNER: The both VA and the GCPR activity that we are doing with the Department of Defense and the Indian Health Service are talking about one part of the infrastructure. That is the utility company to help connect all of us in health care, but that rides on a lot of other infrastructure policy and things, such as security.
So, that is one aspect of interest. We see ourselves as using our resources to both meet our needs and help to contribute to the infrastructure. We want to make sure that those are aligned.
The other is that the President's Quality and Interagency Council and the co-chair of that information systems committee and one of the things that we identified we need to do at least within the Federal Government is not only to identify and get a listing or something a little bit more than a listing of cross-agency activities in health care, but also we wanted to identify a model of infrastructure so we can map what is going on in the Federal Government against that infrastructure to see where the areas are that we at least need to refine it or contribute to it and where the gaps might be, so identifying an infrastructure model would certainly be a terrific help.
PARTICIPANT: May I ask you, because I don't know anything about it. This was the President's Commission on Quality?
DR. KOLODNER: It is a Quality Interagency Council. It is an interagency activity that is in parallel to the council and the forum that have been set up and that are identified in the President's Quality Commission and that are identified in that recommendation. This was a parallel activity that the President has established and will be talking more about.
PARTICIPANT: [Comment off microphone.]
DR. KOLODNER: No, no. The Information Systems Committee under that council identified that we need to have a model so we can make sure --
DR. DEERING: I think that we now have two NCVHS members with us and we will ask them to introduce themselves. Then I will turn it over to Dan Friedman.
Jeff, welcome. We were just starting by having the visitors introduce themselves. So, if you two would introduce yourselves, then, as I say, I will turn it over to Dan.
MR. BLAIR: I am Jeff Blair, vice president of the Medical Records Institute and my responsibility on the NCVHS is co-chair of the CPL Work Group.
DR. FRIEDMAN: I am Dan Friedman, assistant commissioner of the Massachusetts Department of Public Health and since I seemed to have been the last NCVHS member to speak to Don before he got on the plane to China, he asked me to chair this morning's session.
So, we had three items on the agenda, first of all reviewing the charge, which Mary Jo was good enough to draft and, second, discussing the development of a matrix of activities that came up during the HHS Data Council meeting at which Don Detmer presented the health information infrastructure white paper draft and then talk about future activities.
Mary Jo told me that Don hasn't seen the draft charge yet. So, what I would suggest we do --
DR. DEERING: Or he hasn't commented.
DR. FRIEDMAN: Oh, he hasn't commented. So, what I would suggest we do is review it. See if we have any comments and then we can forward those to Don when he returns from the People's Republic.
There is a copy of the charge in front of you.
Jeff, have you reviewed it?
MR. BLAIR: To be honest with you, I haven't reviewed the charge. I did, you know, respond to the -- Mary Jo?
DR. DEERING: Yes. I am over here right next to Dan.
MR. BLAIR: What would you call the document, the overall white paper, would you call it a white paper?
DR. DEERING: A concept paper, right.
MR. BLAIR: I just reviewed the white paper.
DR. FRIEDMAN: So, just take a minute and read it. Take around two, three minutes.
MR. BLAIR: Thank you.
[Multiple discussions.]
DR. DEERING: I didn't want to include it because I kept hoping I would hear from Don and then I could either quickly make a change or not. So, I just belatedly sent it out by e-mail Tuesday.
DR. FRIEDMAN: I will try to give a dramatic reading -- why don't you read it, Mary, since you wrote it.
DR. DEERING: Let me say by way of background that I would say that 95 percent of the language comes at least in the introductory language comes out of the concept paper. There are two paragraphs of background and then there are five lists of specific activities. This was also modeled on other charge statements that I had seen, some of which are less than a page long, some of which are two or three pages long.
This one is a page long. So, it starts out saying, "The work group will monitor developments in areas that represent components of a national health information infrastructure or NHII. The NHII is not conceived as a unitary database but a set of technologies, standards and applications that support communication and information to improve clinical care, monitor public health and educate consumers and patients. The broad goal of the NHII is health, knowledge, management and delivery so that the full array of information needed by professionals, policy makers, researchers, patients, caregivers and consumers to improve health and health care is optimally available.
"The areas initially identified in the work group's October 1998 concept paper include privacy, confidentiality and security, unique health identifiers, standards, population-based data, computer-based health records, knowledge management and decision support and telemedicine. The work group will monitor activities of other NCVHS subcommittees and work groups, activities within HHS and other federal agencies, activities of professional and standards organizations and other pertinent activities.
"The work group will make recommendations to the full committee on opportunities and barriers to integrating these activities more effectively, to help achieve the goals of the NHII. Specifically, the work group will, number one, develop a matrix of existing activities initially modeled on the elements of the three computer-based health records outlined in the concept paper, i.e., consumer health records or personal health records, as they are sometimes called, patient health records and population health records.
"The work group will work with the HHS Data Council and utilize the HHS telehealth inventory for those components within HHS. No. 2, analyze the matrix to identify progress, areas that need focusing or refocusing and areas where new work is needed. No. 3, identify and analyze relevant models, including Australia, Canada, the European Union, the G7 and the United Kingdom.
"No. 4, promote, conduct or collaborate on educational and outreach activities designed to encourage progress toward an effective NHII. No. 5, conduct other activities that may be suggested in the course of this work."
That is the end.
MR. BLAIR: I really like the concept of the consumer and the population-based focus on the health records because almost every time I am on a plane and somebody asks me what I do, the first thing they wind up saying is what about this government-driven national medical database. And I have to immediately start to deal with that and that notion of consumer patient and population base is one of the effective ways to wind up bringing it back to the objectives and purposes and away from this idea of a government-driven activity.
DR. STARFIELD: Dan, what is a population health record?
DR. FRIEDMAN: I think that is a -- that is a real good question, Barbara. I think that what was intended was a -- there is a reference to surveillance and other similar types of data that are not clinical records. So, whether it is public, whether it is the Health Interview Survey or birth records or communicable disease records, my understanding of it would be records that describe the population's health.
DR. STARFIELD: I suppose you could think of it in terms of the -- if you look at different segments of the population, states, cities, whatever they are, as a compendium of records in that geographic area perhaps that provide a record of that population's health, whether, you know, you -- what exists in that geographic area, vital statistics survey, surveillance monitoring. You know, do you slice it this way or do you slice it that way? You know, do you slice it by population or do you slice it by type of data?
MR. BLAIR: I don't know whether this is right. It is sort of what came to my mind and it is similar to what you just described but I was looking at it more down at the integrated delivery system and managed care level, where they would wind up essentially stripping off the patient identifiers and they would have a retrospective secondary database where they would gather information and I thought it would be clinical information from the person focused health records and they would put it in retrospective or secondary database and they would use it for data mining, as well as utilization research, outcomes research, public health research, you know, all of the different types of research, where they are looking to correlate outcomes and performance and demographics for the population.
DR. STARFIELD: I guess that only makes sense if everybody -- you know, you leave out big segments of --
DR. FRIEDMAN: I think also we need to find a way of relating surveillance -- what is now surveillance data to the NHII concept and I would certainly include, Jeff, what you are -- I would certainly include those types of administrative data.
MR. BLAIR: As a subset maybe --
DR. FRIEDMAN: Yes --
MR. BLAIR: -- that category.
DR. FRIEDMAN: Absolutely.
MR. BLAIR: But I do think that this could bear both raising the points as well as our lack of agreements on the points, points to the need for addressing the definitional issue somewhat more clearly in the white paper.
One thing that I would add that, incidentally as a sixth objective or as a sixth task for the workgroup would be iteratively revising the white paper.
Is it possible -- I don't want to halter things too much or change things too much -- I would almost like to see things from the standpoint of what what was the purpose and objective and then wind up with being the tools and enablers to achieve those objectives because in a sense I look as an electronic health record as a tool or enabler, which facilitates many different objectives. And the same thing with telehealth. And they are not mutually exclusive. They can be very interdependent.
I am still reacting to this public concern about a national database and I am trying -- in the back of my mind with almost everything I think of now, it is -- it is, you know, how do we wind up getting the message across that we are looking at standards to enable an information infrastructure as opposed to, quote, building a national database?
DR. LUMPKIN: Could we maybe -- we are all struggling with this concept. I had a meeting with Chris Gebbe and she once said that public health and the medical treatment system both use the same data. They just look at it differently and we are really describing different looks at the same outcome.
So, in a sense what we are talking about -- and it is hard to get, you know, your arms around what this committee's role is, but what we are really talking about is through standards to create the ability to look at the data and to protect it. So, we are not looking to accumulate it, but to allow those different views to occur and not all the views required the same information that are needed at a physician, caregiver, patient kind of --
DR. DEERING: I guess I might just ask the group is how far they think we can go in resolving this definition of the underlying issue and is it absolutely essential before we are able to describe our charge. In other words, is this a task that we really have to thrash through before we can complete the charge statement or can we come close enough to describing what we are about in ways that would enable us to complete a charge statement.
DR. STARFIELD: What is the underlying issue --
DR. DEERING: This issue of how to define what I am hearing from all of you is what is the "it," if you like. What is the "it" underneath it? The concept paper has identified three separate visions of the "it" that are interrelated in many ways.
Jeff strongly endorses the emphasis on plurality, as I understand it, because it conveys more effectively or at least it helps diffuse public apprehensive about a big database and then there are issues about to what extent is public health surveillance data, plus non-identifiable clinical data part of either the "it" or the three "its" and where does it fit in. So, in other words, I am not hearing agreement on whether these -- how these three interlink to each other and what exactly the components of each are.
So, the question is do we want to spend time this morning either going further on that or do we feel, in fact, that that is such a primary stumbling block that we can't do anything without fleshing out those three?
MR. BLAIR: I am not sure that it is a stumbling block. You probably have a sentence or two. Would you draw attention to the key one or two sentences where you really feel like you have defined what the health care information infrastructure is?
DR. DEERING: It says it is not a not a unitary database, but a set of technologies, standards and applications that support communication and information to improve clinical care, monitor public health and educate consumers and patients.
MR. BLAIR: I would feel very comfortable with that.
DR. STARFIELD: Yes, I think that is pretty --
DR. FRIEDMAN: The only thing I would suggest, Mary Jo, is actually -- this is purely wordsmithing, but starting the second sentence with the "NHII is a set of technologies," et cetera, et cetera, and then just having the third sentence be the "The NHII is not conceived of as..."
DR. LUMPKIN: And I would add that it is a system to protect privacy and confidentiality.
MR. BLAIR: Could we make it even stronger? Could we say that it will be a system that will improve and enhance our ability to protect data privacy?
DR. LUMPKIN: Let me give an example. If you intercept a clinical record today in transit, either it is an administrative record or whatever, generally it will have all the -- it will have the person's name on there. In a different scheme, let's suppose you have a number that was accepted on both sides and it was encoded and you intercepted. Unless you are very, very sophisticated, you would not be able to make heads or tails of it. So, now technology allows you to protect medical information in transit from one location to another.
MR. BLAIR: Fine.
DR. FRIEDMAN: I would also suggest in the last sentence of that first paragraph, where it says the broad goal of the NHII is health, knowledge and deliveries with the full array of information needed by professionals, policy makers, researchers, patients, caregivers and consumers to improve health and health care as optimally available. Somehow or another get in there maybe to improve the public's health, something to refer -- to make it clear that we are not just talking about individual --
MR. BLAIR: Could you do the same thing on the sentence that you did on the other way, just reverse the sequence, and say what it is intended to do and then indicate who the folks are that will have access to the information? And when you say who will have access to the information, get the word "authorized access."
DR. DEERING: I want to make sure I have got that. So, one way to do that would be is the broad goal of the NHII is health knowledge management and delivery to improve health and health care and public health --
DR. STARFIELD: The public's health.
DR. DEERING: The public's health?
DR. STARFIELD: Right.
DR. DEERING: Possessive, the public's health and health care. And then full stop somewhere and then talk about these audiences having access -- having authorized access to that information.
MR. BLAIR: Yes. It will permit or allow authorized access, some kind of phrase, to indicate that it is getting it --
DR. DEERING: Well, but how about Internet? I mean, are we talking only about gaited information? My understanding from the concept paper was that this includes information, broadly speaking, especially on the consumer public patient side, which isn't gaited.
MR. BLAIR: Then let's make a distinction between what is authorized access and what is consumer information on health care. Let's make that real separate.
DR. STARFIELD: Jeff, I understand your idea about authorized but, I mean, couldn't you --
DR. LUMPKIN: I suspect that we are struggling because we are talking about different levels and data information, knowledge hierarchy. People don't want folks to have access to their data, but they want to have access to the knowledge that is generated out of that. How do I make a choice of those plans. But the level of ability because we start aggregating up in order to go from knowledge to -- I mean, from data to information to knowledge. So, we may want to -- and I think it is almost -- we are almost saying that there is an extra step in what the work group will do because what we have been trying to do here is to try to put what we want to do in a way that is understandable to everybody else out there.
I think that is probably one of the tasks of this committee.
DR. DEERING: Now, I am not sure that I would know what to make of -- that doesn't impact the first paragraph where we are trying to define the "it" and the information categories and levels.
DR. LUMPKIN: Actually, what I am suggesting is that we probably won't get perfect wording in that paragraph, but we need to sort of understand that part of the role of the committee will be in developing whatever work it does to get closer to that language because as we have learned over the last year, we have the very finely balanced access versus confidentiality and the messages that we craft as a committee are going to be very important in either getting public buy-in or raising public fears.
MR. BLAIR: Barbara asked the question earlier on -- you wound up saying what is the base record and the more I think about it, while I like the idea that it articulated a focus -- a consumer focus, a patient focus and a population focus, I really think you hit on something because I am not really sure that there is a population record or a consumer record. There is a patient record and there is the need to provide health care information to consumers and to analyze health care information for improving public health of populations, but I am not sure that there really are those three separate conceptual records.
DR. STARFIELD: I sort of like the idea that that might be population records, that you could take --
MR. BLAIR: Could we refine it by trying to make it a little more specific and accurate? Maybe what it is is a -- it is information or knowledge about the public health of the populations, of defined populations or something like that. In other words, get a little closer to exactly what it is as opposed to keeping the word "record." And the same thing with the consumer. It is not so much a record the consumer is after. The consumer is after health care knowledge, which might help them in their -- with their personal care, wellness or --
DR. STARFIELD: What did we mean by a consumer --
DR. DEERING: Well, actually they are creating them. They are for sale now. They are on the Internet. People are creating what they call health records and some of them are linking to providers. Kaiser Permanente is creating them on line. I mean, there are personal consumer records, some of which are linked to provider systems.
DR. STARFIELD: It is like your baby book.
Exactly.
DR. DEERING: Exactly.
MR. BLAIR: So, what I was describing was something else that a consumer would be interested in, in addition to a consumer record. Okay. All right. Well, maybe that what is relevant is to say consumer health care information, which could consist of either their consumer record or access to health care knowledge.
DR. STARFIELD: I think that is really different. I actually think that is -- access to consumer health care knowledge is different, if by that you mean, you know, access on the Internet. You don't mean that, do you?
MR. BLAIR: Access to the National Library of Medicine for particular disease types.
DR. STARFIELD: I think that is really different than what is meant here. What is here is -- you know about your own health and the record of your health.
DR. FRIEDMAN: I also wanted to follow up on what I think Mary Jo said was whether or not this is something that we need to resolve in terms of the charge or whether or not we should try to deal with it as we --
[Multiple discussions.]
-- may be just reacting to only having 20 minutes.
DR. DEERING: I think people can think about it and here is what I would -- what I am hearing begin to emerge is that on one hand there is a discussion of what the broad information content and that is a vast, undifferentiated, interlinked -- I mean, hypothetically in the perfect word, perfect preferred vision, there is this knowledge base that includes clinical and non-clinical data and the biomedical research and all of that and it is all delivered to the point of decision.
But on the other hand, you have records, computer-based records, which may specifically include some pieces of that broader knowledge base, but they are tools that serve specific purposes for specific audiences. So that these are not one and same things. There is an underlying information, which has a variety of units and types of information in it and then there is the record, which has some of that information.
MR. BLAIR: I do think that we are going to be limiting ourselves when we describe the health care information infrastructure if we limit ourselves to only describing consumer records, patient records and population records. I think that all of those should be -- those concepts are very useful to introduce. I think they should be included but I think that consumers are not only interested in their records, they are also interested in a variety of -- access to a variety of different types of health care information. And I think that it serves us to say that the health care information infrastructure will help them get access to those other sources of knowledge, as well as a record.
DR. STARFIELD: [Comment off microphone.]
DR. DEERING: The personal health records or the computer health records were only one section of the paper.
MR. BLAIR: Okay. So, this is only within the idea of health records.
DR. FRIEDMAN: We may also as part of the -- as part of whatever specified activities, in addition to sort of generally saying iteratively revise the concept paper, we may also want to specifically address the need to develop some more specific -- you know, a more specific glossary of some of the things that we are -- some of the terms that we have sort of thrown around in here.
So, I would suggest we add that.
DR. DEERING: And it will be important to move fairly energetically toward a focus on what we do mean by these records because the proposal that has been made in a couple of previous meetings, where I realize that not every was present and so it certainly isn't definite was that in terms of this matrix or grid that we keep talking about doing, which is why I had the pad of paper behind me if we had gotten to it, but I don't think we will. We have to define what the axes are and there was the suggestion that looking at our definitions of these three records and looking at the elements that we had listed under those -- under each of those elements might make one or more axes over -- might make one approach to devising this two or three dimensional or four dimensional grids that we need to do.
So, I think that perhaps one thing that we would ask the committee to walk away with since we won't -- I don't know how much time we will have to do it here, but, you know, begin to lay out -- you know, revisit the precise bullets under each of those records as it exists in the concept paper and decide whether those are, in fact, the right bullets and if so, would they lend themselves to this matrix or grid of activities that we said that we wanted to devise?
DR. FRIEDMAN: I think that is a good idea and I also think that in some ways even before we grapple specifically with the matrix, you know, in some ways a good next step might be for each of us to either take all or take some of those incomplete definitions. And I don't mean that negatively, but some of the implied definitions in the concept paper and try to make those somewhat more specific. And we may need to do that before we really flesh out the matrix.
DR. STARFIELD: [Comment off microphone.]
DR. FRIEDMAN: Maybe we should just go down the list of activities that Mary Jo was good enough to put together and then she had also sent out some dates. So, perhaps what we could do is think about what we would want to do at a next meeting and/or conference call.
DR. DEERING: The first one, again, was the matrix and the only thing I would point out there is that we suggested that we would work with the HHS Data Council and also utilize a telehealth inventory that ASMB did recently in response to a request from OMB. So, one of my questions to NCVHS, which to the Data Council is going to be, who is it asks ASMB to give us that because their categories of identifying telehealth activities, which I know for a fact went beyond telemedicine -- I know that they covered a lot of the areas that we are talking about and if they were able to complete their own inventory, then that also might suggest to us axes for our matrix and tell us where to go.
Hetty, I guess my question to Marjorie will be whether -- oh, you are there, Marjorie -- whether if you or Jim Scanlon or how we go about requesting from ASMD a telehealth inventory that was done to --
MS. GREENBERG: I would probably have to check with Jim about that because -- but I wouldn't think it would be a problem.
Do you have it yourself?
DR. DEERING: No. We participated in and helped them formulate what should go into it, at least what should be defined as the categories that people would respond to.
MS. GREENBERG: Well, obviously, it wouldn't make sense if we wouldn't make it available to this group. So, I am sure we can, but I will check with Jim because he has more direct contact with ASMB.
DR. HARDING: I might suggest, too, that Dena Puskin, who is a member of the committee, is also at least head of the joint working group on telehealth and telemedicine. She might have a copy of that as well.
DR. DEERING: I don't think it has been published actually. They just collected it within like the past six weeks or so and it may not even be official yet. That is why we may need somebody high level to see if we can -- at what point it would be available.
MS. GREENBERG: [Comment off microphone.]
DR. DEERING: But certainly the joint working group also has its inventory. I don't know if they have kept it up to date.
DR. HARDING: I think they have and I think they relied on Department of Defense and when the funding dried up there, I think -- it may be only two years out of date.
DR. FRIEDMAN: Mary Jo, I would add a one prime or something prior to the one, which is reviewing the concept paper and developing either a glossary or a glossary of alternative definitions because while we may not, in fact, all agree on the definitions, I do think it would be useful, even if we could lay out some of the alternative definitions for the same phrases in one place.
DR. DEERING: So then another -- we have said that we would analyze the matrix but we would have to build it first. So, we can jump over that, I presume. But No. 3 was to identify and analyze relevant models and, Jeff, you have helpfully suggested both the G7 and the European Union and Australia and Canada and the U.K.
I think someone suggested -- and, again, I don't know, maybe this was you, Dan, that we could actually consider -- and I don't know the protocol here -- commissioning a paper to do that --
[Multiple discussions.]
MS. GREENBERG: This is commission a paper on --
DR. DEERING: To analyze what has been put out in other countries in similar areas.
MR. BLAIR: Mary Jo, I promised I would bring you a copy of the presentation I will be giving next week in London. Here it is. I think that, you know, your other sources will give deeper and broader information. It does list a number of the especially the European initiatives to create health care information infrastructures.
DR. STARFIELD: Can I have a copy of that to read on the way home?
MR. BLAIR: Sure. The purpose of the presentation wasn't directly aimed at health care information infrastructure. It touches on that in terms of the evolution towards a global framework for electronic health records and the way it is constructed, it basically takes a look at what is being done worldwide for health care information infrastructure and then it drills down to wind up saying we can't do this all at once. It is going to be a journey. What will be the core elements or the essential elements to first just simply share comparable data and it winds up picking out four basic categories for that and then it indicates that that will evolve over phases and what forms are in place globally to be able to move that forward.
So, that is what this presentation does. So, it is a little tangential to our mission, but there may be some ideas in there that may be of value.
MS. GREENBERG: One of the papers that we are doing under the vision for the 21st Century for health statistics is a look at other countries, systems at least for health statistics, but also models for health information and health statistics systems.
So, that may not go the whole way, but it would certainly be a contributor. Also, there was just -- this was the European, but there was just a meeting -- about every four years the U.N. and WHO sponsor a European health statistics meeting and there was a meeting last month in Rome. Two of my colleagues at NCHS went to it and I got a copy of all of the papers or the titles of all the papers. Some of those at least addressed for their own countries the issues or there are some that actually are broader for Europe done by the regional offices. So, those might be of interest to the members.
DR. FRIEDMAN: Getting back to the paper that you mentioned, Marjorie, the person who is going to be the author of that paper, the lead author, is Jennifer Zoma(?) from the Canadian Institute for Health Information and she is one of the people -- my impression is that she is one of the people north of the border who has been working on developing a concept of a Canadian health information infrastructure.
So, I agree with Marjorie, that paper really isn't going to directly address that, but it might be possible somehow -- I don't have anything in mind -- it might be possible somehow or another to parlay that paper with some expansion into a review. The other thing we can do -- I mean, this thing is really obvious, but just put together some of the information from Australia and Canada and the U.K., et cetera, et cetera, I mean, just so we can at least -- even if we don't have the good fortune to have somebody do a gloss for us --
DR. DEERING: Is it cricket to ask if there is money to have somebody -- I mean, would the group want to do a meta sort of an analysis if -- and want to make that request?
DR. STARFIELD: [Comment off microphone.]
DR. DEERING: So, that would come later when we are clear on what --
DR. STARFIELD: [Comment off microphone.]
DR. FRIEDMAN: I think the first step is definitional and the second is building a matrix and then I do think it would be helpful to at least assemble material from other countries that we could all take a look at. I am sure Jeff has a lot of it. I have a tiny bit of it.
DR. HARDING: Could I make a suggestion that the Canadian Ministry for Health Care Informatics has been funded to do an awful lot of coordination within Canadian and they did coordination with the European Union. Richard Alvarez is the head of that and they may have a study that at least compares Canada's efforts and the European efforts. That would be a contact for them to see what they have pulled together.
DR. DEERING: Someone very helpfully -- maybe it was you, Dan, you gave me a copy of Alvarez's and Jennifer's paper, but, unfortunately, all any of us have, I think, is a fax of a xerox or a fax or something like that. We were going to try and track that down because there is --
MR. BLAIR: Richard Alvarez sent me one -- gee, I think I could fax it to you on Saturday morning.
DR. DEERING: I would be happy to try and collect that or if it would go to Hetty or Marjorie or somebody who takes charge of distributing everything. I also had started to collect here -- this is more stuff from on line, although I had the Alvarez paper.
Marjorie, I never knew who this Health Information Framework Version 1.0 1997 was from. There was no identifier.
MS. GREENBERG: Oh, it was from me, but you mean who -- I am sorry. I guess they didn't fax the top or send you the top page. It is from the Canadian Institute for Health Information.
DR. DEERING: Oh, okay. Okay. So, that is a 1997 document. So, Marjorie did give me that. And we have the Alvarez article. Then I did print out from the Australian home page, their national health information knowledge base and you can locate that at WWW.AIHW.GOV.AU and then click on "Knowledge Base."
MS. GREENBERG: We have actually several contacts in Australia and had somebody who was over here actually talking about that knowledge base, but Bob Mayes actually went over there and visited with them and so it might be good to get him to a work group meeting, too.
[Multiple discussions.]
DR. DEERING: And also at the end of the concept paper there are a series of Web site addresses that are -- I think we have got the synapses in there. I think we are missing the G7 site because, Jeff, you gave that to me afterward and for anybody -- well, that is too long. I will hand those out later.
DR. FRIEDMAN: In terms of the next meeting, be it virtual or not virtual, agenda, definitions and matrix? Does that make sense to folks?
DR. DEERING: And by the way, what we are looking at is the Executive Subcommittee has a meeting on Thursday, the 7th of January. So, Don had tentatively identified Wednesday, and that is an almost all day meeting, 10:00 to 3:00. So, he had tentatively identified Wednesday, January 6th as an extended real meeting that would be our first really lengthy working meeting of this group. I don't know whether we are talking three hours, six hours there. I would appreciate it if everyone would think about that and let me know whether that work for them and then the next opportunity after that is at the full NCVHS committee is February 2nd to 4th.
Committees are being encouraged to use one of those days, but what I didn't understand was whether everybody was supposed to use only the 2nd. Maybe Marjorie knows or --
MS. ARAKI: The Subcommittee on Privacy and Confidentiality is going to have a meeting on the 2nd. So the full committee is meeting the 3rd and the 4th.
DR. DEERING: So, we could also have a meeting on the 2nd, except some of our --
[Multiple discussions.]
February 2nd. So, it might be January 6th as our own meeting and then February 2nd. Or there could be time on the 3rd and the 4th if we needed a shorter meeting.
[Multiple discussions.]
DR. FRIEDMAN: So, we are aiming for January 6th?
DR. DEERING: January 6th.
DR. FRIEDMAN: Is that here?
DR. DEERING: I guess it would be here and what we could -- since it is supposed to be a longer meeting, it is hard to set up a conference call for those of you who have trouble traveling and since there is such substantive work to be finally done, I guess it has got to be a real meeting.
The other thing I wanted to point out to Dan before you go, those of you who participated, you have a copy of the draft minutes in your package from your conference call on the 29th. Those of you who participated, if you would take a look at that and get back to me as to whether or not they are correct, that would be a help.
DR. FRIEDMAN: Thank you, Mary Jo. When are you leaving?
DR. DEERING: Tonight.
MS. ARAKI: [Comment off microphone.]
DR. FRIEDMAN: I don't think we are comfortable doing that until Don has had a chance to review and bless it and we are going to do a little bit more work on it, too.
So, maybe when you get back --
DR. DEERING: If I have an opportunity, I will try and redo the charge today before I leave. I may as well as see if I have got it right. I will try and do that. But if you haven't seen it in your e-mail by tomorrow, why go ahead and take your own stab at it.
MS. KHAN: Mary Jo, since you will be leaving --
DR. DEERING: I will be back on Monday.
MS. KHAN: Okay.
[Whereupon, at 9:00 a.m., the meeting was concluded.]