Hubert H. Humphrey Building
200 Independence Avenue,
S.W.
Room 405-A
Washington, DC
Introductions and Agenda Overview - Dr. Detmer
ASMB Inventory of HHS Telehealth Activities - Ms. O'Connell
Discussion of Second Draft of "Charge Statement"
Presentations on Computer Health Records:
Discussion on Core Elements for Patient, Population, and Personal Records
DR. DETMER: Hi, Jeff, and good morning everyone on the committee. Well, I think I have ten, so I think we may go ahead and get started.
I'm Don Detmer, and chair the Work Group on the National Health Information Infrastructure. What we wanted to do actually today, and I'll start just by sort of going over the agenda very briefly. Then we'll go around the room as usual, and introduce ourselves.
We want to start frankly, getting up to speed a little bit on what is happening both in the department and government, as well as sort of in the fields that relate to this issue of health information infrastructure. So we have a number of both presentations, as well as some discussion items.
We do have also a charge statement that we would like to review and approve to take to the full committee that is meeting in February.
So at least that's my sense. Mary Jo, what did I miss with what we're going to do?
DR. DEERING: I think that's the core of it. There was some feeling at our very brief meeting that we had back in November that one of the tasks today is to begin to refine some definitions for each of the individual health records. And then based on that, begin to see how that builds into the matrix, and then be mindful of how that might impact our original vision statement.
DR. DETMER: Great. Well, with that, first I want to express my appreciation and gratefulness for all of you being here today. Let us then just go on around the room and make our introductions.
[Introductions from were made.]
DR. DETMER: The first item that we have on the agenda is the inventory of the department's telehealth activities. Erin, I think you are prepared to lead us into this?
MS. O'CONNELL: Yes, I am. Thank you for the introduction. It's a pleasure to be before you, and this is just going to be a brief overview, a little bit of an introduction to why I'm here, and how I got to be here. I thank you for inviting me to come speak with you.
I work upstairs for Dr. Callahan(?), the assistant secretary for management and budget. I am a budget analyst. Last summer he had begun the process of assessing where we are at the department in budget authority and spending basically for telehealth and telemedicine. I work for the Division of Budget Policy and Management. We do the cross-cutting issues. We maintain tables for cancer spending, diabetes funding, different kinds of health sector spending.
Through my bosses, the assignment was channeled to me just to begin to assess where each of the agencies are in what kinds of spending, what kinds of systems they are running, where are the barriers to service, what is happening.
This was not my primary assignment. I've had different kinds of assignments, but it's been a very interesting process. I will be giving a more complete slide presentation in the future, but today I just thought I would come down and introduce myself, and let you know that Dr. Callahan considers this a very high priority; not only assessing where we are, but helping maintain the foundation, and provide new direction for the future.
We'll be glad to be of assistance to the committee wherever we are needed. So it is an honor to be here, and please do use me, and work through me if you wish for any kind of data that you need.
So with that said, and with gratitude expressed, I do want to say that what we are doing is beginning to compile budget authority and general spending for each of the agencies in the department. I did a presentation to Dr. Callahan on October 2, which basically outlined for him my findings so far.
A lot of this is grassroots. A lot of this is calling around and seeing who, if any, are the contact people. But what we did assess so far -- and like I said, I will share greater detail later -- but approximately in the fiscal year 2000 request, there is appropriately $101 million being requested for telemedicine or telehealth services. It is pretty broad in terms of its scope.
IHS, the Indian Health Service has been doing telemedicine for approximately 30 years now. They have a very high reliance on store and forward technology. They also do use it quite frequently. They are trying to train a lot of the tribes to use the basic otoscopies for ear, and using the connections with the western hospitals in order to provide services to their patients.
We have the CDC involved. NIH, as you all are aware, is quite involve. AHCPR is researching any kind of barrier to clinical services. HCFA has been very interested and very integral in the development of regulations as you are also aware; and SAMHSA and the FDA. So we do have a whole scope of services, and they do range across the spectrum.
Dr. Callahan had specifically asked that we begin to collect data from 1993 onward. So prior to that, I will need to speak with other people. He thought that it would be a good idea to stick with the administration, and go from there.
So far I would like to basically take an assessment on what kinds of things would you like me to talk about when I come.
DR. DEERING: I think the point being that we had arranged for her to come for our February meeting, at which point her work would be truly advanced. So this was an opportunity to find out the source of information they are gathering, and see what would be the most useful to us. And given the fact that we too were trying to come up with a matrix of what was going on in matrix, if they are doing the matrix for us, at least covering most of the areas, that would be very helpful.
MS. O'CONNELL: I'll give you a brief outline of what I had thought might be useful, and you can tell me if further items are necessary. I thought I would go into a history of how the department started, and which optives or agencies were active from the beginning.
Then I would do a brief inventory of what kinds of services they are using. Then go into the increases in budget authority and spending over the last nine years. Then I would go into what kinds of barriers to services that the evaluation has told us, and highlight the differences between the perspectives and the definitions between optives or agencies.
DR. DETMER: That would be great. I think some other issues that would be useful are what are some regulatory barriers as well. One of the things I have run into in the past in telehealth was that although the telecommunications reforms a few years ago did some things, it doesn't necessarily move transmission to actually the point of use, all the way to the person, at their home and so forth. A lot of the game that can come in telehealth is actually dealing with chronic illness, to people's homes, with low end, very inexpensive equipment.
But if you don't have, as a regulatory decision, all of the communications companies just as a matter of regulation saying, you will do this, none of them competitively will take the first step to do it. On the other hand, the cost ultimately is not that great for them if all of them had to do it. But if one of them was to take the lead, they won't do it.
So I would also like to get some sense of what you found out, not just barriers that may be out there, but also sort of the barriers that aren't necessarily costly barriers per se, but nonetheless are things that perhaps the committee could bring to the secretary's attention, and to the White House's attention.
MS. O'CONNELL: Thank you.
DR. DETMER: Others?
DR. DEERING: One other thing that occurs to me is a simple delineation of the terms that you did end up using. If it were possible for you to even get that to us in advance. I realize that that too is a work in progress, and that's sort of what we are going to be doing today. But I know that you spent some time trying to figure out what do we call these things that we're trying to track. So that would help us.
MS. O'CONNELL: In terms of a definition of telemedicine, telehealth? Yes, I do have working definition.
DR. DEERING: It's not so much as a process definition, so much as your cells, your categories. I don't know what those categories are. I'm guessing some of them might be clinical services. I'm guessing some of them might be information -- some of NLM's work might come under information management. Again, I don't know how you have described those cells.
MS. O'CONNELL: That's actually a very interesting point, because as I was compiling -- I do have a working table -- as I was compiling, each of the optives and agencies had rightfully asked, what are you calling clinical services. Or what is the cut off for what is telehealth? What is the cut off for the equipment? So I understand where you are coming from. I will be glad to do that.
DR. DETMER: I think to some extent getting into this, a lot of our first paper I think was almost a why of infrastructure, and what pieces are in there. But increasingly as we move to laying out the terms and all of this business, it becomes a how issue. So I guess the other question, or to take a different kind of cut at it, trying to help us lay out these terms and such, but to the extent that you can now, but also in the future, kind of see us as maybe a port of call for some health issues, for deliberations, testimony, and so forth, we would like to be a resource to you folks, not just the other way around.
MS. O'CONNELL: Thank you. Well, I look forward to speaking with you in February, and again in the future, and I'll be glad to be of help where I can.
DR. DETMER: Okay, questions or comments?
DR. STEIDEL: Are you going to be touching on the legal barriers across state lines, et cetera, in your talk?
MS. O'CONNELL: I would like to. I don't know very much about them. Between now and February we are going to be thoroughly immersed in the budget. If I can address that, I will be glad to.
DR. STEIDEL: That's one of the biggest things that been in a lot of areas.
MS. O'CONNELL: I have a few lawyer friends who are involved in telemedicine issues, and also in licensing. I'd like to be able to speak with them, but I understand the concerns.
DR. DETMER: Yes, those are big, both policy and political, as well as legal issues. Sharing that would be a good idea.
DR. DEERING: I don't know whether you will touch on -- another aspect of the regulatory barriers has to do with reimbursement issues. Don's statement that the greatest bang for the buck would probably be in chronic care management needs, lowering delivery to the homes, what are we doing in HCFA and IHS, and even VA. I know Claude isn't here now. He works very closely in those issues.
Then a related issue, what is FDA from a device regulation point of view doing about this, because I know they have been sort of tiptoeing around the edge and sticking their toes and feet in from time to time. But those are two agencies whose actions impact our delivery of low end technology and content to the home.
DR. DETMER: Jeff, do you have any questions or comments?
MR. BLAIR: No, I don't. Thank you.
DR. DETMER: I guess to add to this, I think when you present your materials at the next meeting, and once we have gotten through this phase of getting things up on the table, it strikes me that what this work group will need to do is to lay out its own work plan for the year. But we've got to get more on the table right now to do that, because there is a huge amount of things in this, and decide what our own priorities and expectations will be for the year.
Some of that probably will require getting this stuff on the table, and then saying maybe we move, and where do we maybe make more impact, and start trying to lay out a couple year plan, something like that. Does that sound reasonable?
MS. GREENBERG: I just also wanted to thank Erin, and to note that as the sort of in-house historian at some of these meetings, because I've been working with the committee for a long time, and I think in my experience it's the first time the committee has had interaction with staff from ASMB. I think it speaks to the benefits of working with the Data Council, and having broader staffing, and just broader exposure.
I would confirm what Dr. Detmer said too, about that the committee should be seen as a resource from the point of view of hearings and other activities they can carry out. Hopefully, it can be a mutually beneficial relationship. I think this is really great. I thank you for coming.
MS. O'CONNELL: I was invited. I do want to add just one last thing. I do want to clear something up. When we were asked to begin to compile the information on telemedicine and/or telehealth spending in the department, at that time it was made clear to me only that it was Dr. Callahan's initiative that wanted the information. As to what drove his fire behind that, I'm not certain.
At this time, this report -- I'm working on a collection of my ideas and a report of where the department is. That entire paper was not shared with OMB, or it had not gone down to the Budget Office. So OMB was driving this request for information more about health information technology. That request came after I had compiled this information, and this was just added on top, because there was a little bit of confusion I believe among the department on who initiated ASMB's involvement.
The assignment came to me from Dr. Callahan, and through my bosses, but afterwards we only shared a piece of the information with the Office of Management and Budget. So I know there was a bit of confusion before as to was it OMB that was driving the request.
DR. DEERING: This might also be a chance to give Maureen an opportunity if she wants to say anything, because Maureen is really the matchmaker here for us. So helped make this happen. I don't know if you wanted to add anything.
MS. WILLIAMS: I think I'm the newest member of the committee here. My background prior to coming back to the department level was I worked a number of years at St. Luke's Hospital, then at a federal agency, then for a few years for the DC government. I was head of financial and legal affairs over there.
I happened to meet Mary Jo in another context and we started talking. I realized that some of the activities that you all are dealing with, are things that are near and dear to my heart from a prior life, but also by virtue of the fact of working directly for Dr. Callahan. What I enjoy seeing is a process, and how activities actually come to fruition.
One of my current assignments for Dr. Callahan is an officemate and myself are writing the plan for the department on how we are moving into electronic commerce. This is something that is amazing about what you are talking about today, how much of this is actually part of what we are already analyzing in the department.
So it's amazing how we can have a number of different activities linked together, but we can be very, very productive as long as the left hand knows what the right hand is doing. I really look forward to working with you.
DR. DETMER: Okay, well, it sounds like you will be a great resource to us, so I encourage you to really weigh in.
MS. WILLIAMS: No problem.
DR. DETMER: That's good.
Richard Harding just joined us, a member of the committee. Do you have anything you want to say?
DR. HARDING: I apologize for USAir. The crew couldn't get out of Pittsburgh to get down to Charlotte, but we got here. It's good to see you. I'm glad to be here.
DR. DETMER: We have just heard from Erin O'Connell about some work that she will be presenting in greater detail at the February detail; and Maureen. This is Erin, that's Maureen.
Thank you then. We will see you later. You are welcome to stay as long as you want.
MS. O'CONNELL: I would love to stay, but the budget calls.
DR. DETMER: Our next item is to discuss the charge statement, and I think you've got it in your materials. It's called, "Second Draft."
What we hope to do is to revise this to the point that we can approve this today, and take it to the full committee for review, and hopefully passing. Right? Is that your goal? Okay. So that's open. It's on the floor for discussion.
MS. GREENBERG: May I ask one preliminary question? That is, we have noticed in just in roster, minutes, agendas, whatever, sometimes the work group is referred to as the Work Group on National Health Information Infrastructure, which is what it says here, and which I had thought was the name of the group. But other times it is referred to as the Work Group on A Health Information Infrastructure.
I don't think it fundamentally changes what the group is doing, but I think we need to agree on what the name, just for starters.
DR. DETMER: All right, what's your preference? Since we're the National Committee, I guess the question is, is the "and" assumed or not, really, don't you think? I don't see us sensibly not being national in the way we are looking at it.
MS. GREENBERG: Well, that's true. Also, I think the "national" links it in maybe a little better with the NII.
DR. DETMER: Right, oh, I see what you are saying. So you see although it's not a matter of real confusion, it might help to leave it on there?
MS. GREENBERG: I think so, but on the other hand, since I have seen other materials coming out with the alternative --
DR. DETMER: Certainly when you use an abbreviation, an additional letter, it's hardly a problem, NHII, as opposed to HII.
What are other thoughts?
DR. FRIEDMAN: I'd rather not change my file folders, so I vote for NHII.
DR. DETMER: All right, just so we have some sense on that. I don't know if you want to go down through each of these by paragraph, or if you want to lead us through it, or what, but it probably is a good idea to do that. Let's at least read the paragraph. We'll kind of go through it that way, and then see if there is comment or discussion or concern.
Any suggestions on the first paragraph? Too long, too short, things not there, not clear? Obviously, it's not as though these don't still get periodic revision or use, so it's not like we're going to put this in marble downstairs somewhere.
DR. DEERING: The language comes mostly out of the vision paper. The only changes made to this paragraph after the November were the addition of line four of the separate stand alone sentence, "It is not a unitary database." I think there is strong interest in reiterating that as strongly as possible.
Then in the two lines further down, "needed to improve the public's health and health care" was added to emphasize again the collective nature of this, and the public health and individual health, as well as health care specifically.
DR. DETMER: I don't hear much, so I assume it's okay. All right, how about the next one, "The areas initially identified in the Work Group's October," -- essentially these were the headings actually of the paper. What this basically is laying I think is a strategy at this point as basically monitoring information and identifying things, not so much making recommendations. Just trying to get a lay of the land, as much as anything else, but then talking about recommendations in the next one on ways to integrate these activities and move things along.
DR. DEERING: The other thing I'm noticing is that if you jump down to number four under what we do specifically, that's where we get into international models. Would there be any desire on the part of the committee to include in this second paragraph, the fact that we'll be monitoring international activity?
DR. DETMER: Well, we probably ought to. It is an item that is not listed -- it is listed in the paper, but it's not listed in these subtitles. So, yes, I think we probably ought to add it.
DR. DEERING: In the first sentence.
DR. DETMER: That's a good idea. International collaboration. We could say relevant global activities or something like that. I think that's a good suggestion.
Other suggestions?
MS. GREENBERG: In the second sentence I think it would be clearer to me if it said the work group will monitor activities in these areas of other -- because otherwise to make the connection, or will monitor these activities. I guess what you are saying is --
DR. DETMER: One is content areas, and the other was sort of where the thing is coming from. You see what I'm saying?
MS. GREENBERG: Yes.
DR. DETMER: That was the goal on that, sort to lay out both the topic areas, but also then what primarily are things that we would see these coming from.
MS. GREENBERG: NCVHS subcommittees are related to all of these areas, I guess is what you are saying?
DR. DETMER: Yes. Do you want to wordsmith it?
MS. GREENBERG: Maybe it may be a little wordy, what I said. The work will monitor activities in these areas of other -- or relevant activities.
DR. DETMER: That's fine. That's easy enough. Why don't you put relevant in? It relates then to that. So we'll add international, global, something like that, and relevant.
Others? Okay, "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."
DR. HARDING: In the last sentence of the first paragraph, "The NHII as a system should seek improve and enhance privacy and confidentiality." "Should" is a funny word. Is designed to, or that's the intent? Will improve, is intended to improve? Something should is kind of like maybe it will, maybe it won't.
DR. DETMER: I think it would be tough to say it will, because we don't know that it will until you find out. So I'm not sure what you are raising.
DR. HARDING: The intent is to make a difference, something like that?
DR. DETMER: Or should seek to, or something like that?
DR. HARDING: Seek to, that might be better.
DR. DETMER: Okay.
DR. FRIEDMAN: Don, since we're picking, you may want to think about moving the first sentence of the first paragraph down to the second paragraph. I think it would just read better if we just started out with a statement of what it is, and then the second paragraph is really where we start dealing with what we are going to do.
DR. DETMER: All right, that's fine.
DR. FRIEDMAN: It would take a little bit of editing, but we could probably knock out a sentence or a few words in that second paragraph then.
DR. DETMER: Any others? Okay, let's move on down then to, "the Work Group will." The idea here is that we would see actually in a way the Concept Paper being something that stays a relevant document, depending on what is happening at any given time. So obviously I would think that you would want to review that maybe at least annually, don't you think, whether we make that explicit or not?
It seems to me like we would at least want to look at it in detail each year to see where we seem to be. So maybe review the concept paper at least annually, or something like that. Produce iterative revisions. Then the first task, that's fine. Other comments on one?
The second was a sense that we really needed to just sort of lay the terrain map out on this thing in terms of what is going on, and where is it happening. Again, I don't know if this is understandable English or not, but at any rate, that's the goal of the thing. Other comments on that?
Not hearing any, three, analyze it to look at progress areas meaning refocusing areas where new work is needed. It's essentially okay, once you've got the thing, so what? I guess the question in my mind relevant to identifying and analyzing relevant models, maybe to some extent it does say we will make recommendations to the full committee, but it seems to me like what I'm seeing in conversations with colleagues around the world is really a need for us to pretty actively try -- if we are the primary part of the NCVHS that is going to be tracking what is happening internationally on some of these things, and I think we are, aren't we, this work group?
MS. GREENBERG: Yes.
DR. DETMER: Then it would seem to me like we shouldn't just identify and analyze, but I think really sort of routinely report to the full committee on this, because things are really active right now. You look at what Australia is doing, and Europe is starting to move. I think actually HL-7 even internationally is doing more than it has been.
MS. GREENBERG: Going back to number two, when you say "develop the matrix of existing activities," is it to be activities in all of these areas that were identified in the concept paper?
DR. DETMER: Right.
MS. GREENBERG: And if so, will they fit into this model of the three types of records? I see that the three types of records are a critical aspect of it, but I don't think everything will fit into those.
DR. DETMER: No, that's a good point; it may not.
DR. DEERING: I think the tension was raised from the beginning in that there was no pretense whatsoever that we knew exactly what this matrix would look like. To kind of get there, it seemed that one useful first step, and that would drive our work later this morning, would be to try and figure out exactly what is unique about those records and their core elements, and then see whether they would lend themselves to it. Certainly, there was a great degree of modest in our assumptions about how quickly we could build this matrix.
DR. DETMER: One option might be initially assessed against the elements of or something in light of that. You are right, they may not. The sense that I think in terms of the model, just to speak to that for a moment, is that there really appeared to be three domains of databases if you -- of data, not necessarily databases -- one relating to personal health information that people want both for personal education. Information about how to keep and maintain their own health; their own just health data in a personal kind of sense.
There is also a set of data that relate to what you would call the delivery systems data as it relates to direct delivery of services to patients, and what is involved in sort of managing and monitoring that. Then a set of data that related to populations; both aggregates of individual data, but in some instances, specific population initiatives that are not coming out of either of these other two personal repositories of information, or necessarily coming out of the delivery system database itself.
But I can't think of any other kind of domain, but I'm not saying that it wouldn't possibly exist once you went down through this. I'm not arguing with you.
MS. GREENBERG: What I was thinking is that may pretty much cover the waterfront on content, but if you look at some of these areas, they are going to cut across all of them, and maybe interact two different ways.
DR. DETMER: Part of the thinking -- and again, whether we are pushing something through this that won't go -- is how do we try to get from just something that is a nice kind of lay out everything on a board, and then sort of look at it, to how do we get something into concepts and frameworks that allow you to take action off of it?
I think the sense was if you parse it into these more actionable kinds of things conceptually, they may have faster legs. Now I don't know that they will, but one of the problems I think of governments, and particularly big governments is that you can be very busy just writing things, and not necessarily have it in a way that really creates an infrastructure, and serves things, and gets things done.
So that is my concern. That is the tension on the other side of this that comes with just sort of saying, well, let's not try to give it. But I'm not saying that you're with me, or that that's where we ought to go.
DR. FRIEDMAN: What I would suggest in light of what you are saying is to try to simplify a little bit that second point. Maybe something to make it a bit more general, to the effect of develop a matrix of existing activities related to the NHII, with particular emphasis on computer health records as outlined in the Concept Paper, and whatever other areas identified in the Concept Paper. Something like that; the words aren't quite right. Rather than defining exactly what the matrix would look like.
DR. DETMER: I think that's useful.
DR. DEERING: I have a question that picks up on both three and four, and harks back to the stand alone sentence, which is paragraph three. That says, "We will make recommendations," but it doesn't say what about. Now of all of the items that we have down there, it seems that three and four are the two that really lend themselves to specific recommendations, because you have just added to number four the concept of reporting back to the committee.
Clearly, the purpose of number three is to drive recommendations. So my only question is as much procedural as editorial -- it certainly isn't substantive -- is there is a need to bring in language to items three and four, or somewhere else about specific recommendations on or to reporting on, and follow-up on what is the outcome of that action?
MS. GREENBERG: You were going to add that to three right?
DR. DETMER: We're going to add it to four. We could add it to three, or we could in fact clump those four together. I think you point is well taken. I think you are right, they are more actionable kinds of items.
MS. GREENBERG: You could have between four and five.
DR. DETMER: In terms of recommendations.
MS. GREENBERG: You could have a new five, which is analyze, identify, and make recommendations related to these areas or report to the full committee, and then go on to promote and conduct.
DR. DETMER: All right, well, I think we can wordsmith that. I guess the question of whether six needs to be there. That's just sort of implied. We also are going to be awake. Do we need that there? I guess for completeness' sake, probably.
DR. DEERING: That was a protocol issue, that if you didn't leave the door open, since this is such a formal entity, did you need to acknowledge that you have limited these points that are specified, but I don't know.
DR. DETMER: Sure. I guess the other question -- well, no, I think it's fine.
Jeff, any issues?
MR. BLAIR: No, not at this time. Thank you.
DR. DETMER: All right. Others?
DR. HARDING: I have a comment on number five, promote, conduct, or collaborate with whom?
DR. DETMER: At least we would be in a position to respond to it. That doesn't mean we would necessarily do it.
DR. HARDING: Did that mean international, or the things above?
DR. DETMER: Oh, I see what you mean. Well, that's a good point.
DR. DEERING: With any relevant parties? With any relevant partners? With any appropriate partners?
DR. DETMER: Some of that would require obviously the sort of review and approval of in a given instance, the NCVHS itself, and quite possibly the Data Council as well.
DR. HARDING: If it's open-ended for a purpose, that's fine.
DR. DETMER: I guess what we were sort of saying here is that we did see us being in an activist role relative to outside players, as well as the government on how to move the agenda forward. I think that's really the intent of the thing, but I think your point is that it isn't very precise.
MS. GREENBERG: You could just say collaborate as appropriate, to leave how that gets defined by the full committee, by the Data Council, by the department, who knows, open.
DR. DETMER: Others? We had this as a draft. It's up to you as to whether we want to act on it and carry it forward. I would like to. It seems like we kind of massaged it a fair amount at this point. If you are comfortable with that, I would accept a motion. If not, we'll either pass it or not, or won't get a second.
What is your pleasure?
DR. FRIEDMAN: I think we should pass and accept it as revised.
DR. DETMER: Is that a motion?
DR. FRIEDMAN: Yes, it's a motion.
DR. DETMER: Is there a second?
DR. HARDING: Seconded, if we could see it though before the final vote.
DR. DETMER: Okay, we'll be here tomorrow, so maybe what we could do is table this motion until tomorrow. We'll bring it back in a time specific, and talk about it with the draft prose. So we are talking about tabling to tomorrow's meeting. All in favor say aye. Opposed?
MS. GREENBERG: My only concern is who do we know is going to be here tomorrow?
DR. DEERING: Jeff will not be there tomorrow. An alternative is that I can, depending on what is going on in my office, I find this really moderate. I can run upstairs and redo it, and bring it back this afternoon.
DR. DETMER: Yes, maybe we can do it this afternoon.
MS. GREENBERG: Then we'll put it in the agenda books for the February meeting, so we can give people a chance to see it before the meeting even.
DR. DETMER: All right. So we'll do it at least by the end of tomorrow, if not today.
We next have some presentations that relate to essentially this kind of matrix model we are talking about. I think Jeff is going to give us a presentation on the dimension of computer-based health records from the perspective of patient care. Then Dan will pick up on population records, and Mary Jo will give a demonstration of probably what is I'd say, the most rapidly developing phenomenon I've almost ever seen in my life in the area of health records. It's quite remarkable what is going out there right now. So she'll be talking about that. That will take us to our lunch break.
Jeff, are you prepared to present?
DR. DEERING: I had a question, or actually it was sort of an alert to everyone as that they listened, that they must listen in as active a mode, because my understanding based on our earlier discussions of what we have already said this morning is that the purpose of these presentations is for us to try and discern what are the core elements of each of these three types of health records.
Now clearly, these are records are in some cases being defined by forces beyond our control, so it's not like we are defining what the core elements are. But we are trying to understand at least what the core elements are, because it is on those elements that we are think we may be building the matrix.
So the challenge is to listen to what you hear to be as core elements. One of the reasons we have old fashioned flip charts and grease pencils is that at one point then we will be moving on to review the table that was in the vision paper, and start adding and deleting based on what you hear in these presentations.
DR. DETMER: Yes, that's essentially the work plan for the day. That's really what we are going to be doing pretty much today.
MR. BLAIR: I think what I'll do, as I present each section, I will pause afterwards, so that I can hear if you have any questions. The other thing is I would say that this happens to be a presentation that was prepared for Europe a month ago. I believe the reason that Mary Jo asked me to review this with you is because it does kind of give a conceptual overview of the basic components of an electronic health record at the vision level, and shows how it might relate to health care information infrastructures.
I am going to try to focus on those points. I'm going to skip through a lot of the presentation, so that we could hopefully get through this in maybe 20 or 25 minutes, and there will be time for questions. Is that okay?
DR. DETMER: Yes.
MR. BLAIR: If you look at the agenda, the agenda winds up having about five major sections in it, which is the factors that are leading to the development of a framework for electronic health records. We then wind up hitting what is the vision of electronic health records.
The next piece is what are some of the major initiatives. That's the next section. The next one after that is what are the essential elements of a global health record. That may apply whether it is global, or whether it is part of a health care information infrastructure, because the vision of an electronic health record might evolve over 15-20 years. By the same token, so might a health care information infrastructure.
We will probably be proceeding in phases, so we probably need to identify what the first or second or third phase might be. I think that is going to be consistent with some of the early discussion during this last 30 minutes, as well as the presentation that Erin made on telehealth.
Then the last thing is what do we need to do in order to try to move the ball forward a little bit?
If then try to slide three. Slide three is pretty much what I think you all are familiar with as to the forces that are driving towards the need for health care information infrastructure. Many of the major challenges that we have in health care can be helped if we did have a health care information infrastructure. I'm not going to take you through that slide. I think you have seen all those points before, and understand it pretty well.
I think the next slide, I believe that is slide four, is the divider slide for the next section, which is the vision section.
If you go to slide five, I thought it was appropriate, and I think this is consistent also with the thinking on the committee to begin the beginning of how we look at the vision of electronic health records, with a statement of values. That happens to have been the one from the World Health Organization, Jublajon(?) Charter.
Why don't we go on to the next slide? Should I pause here for a second in case there are any questions?
DR. DETMER: Yes, I don't want you to roar through this. If everybody is comfortable, fine, but make sure that people break in.
MR. BLAIR: I just wanted to make sure that I could hear you, because if I'm talking, I wasn't sure that it would come through on the phone.
Part of the next two slides are to indicate that the vision that has been emerging within the United States, and the vision that is emerging at least in England is very similar in terms of the vision of an electronic health record. The words are a little bit different, because we wind up referring to our institutions a little bit differently, and sometimes caregivers or processes a little differently.
But if you wind up just even looking at the graphic, what you can see is certain basic concepts of that vision. I would argue that both visions are patient- focused. You wind up seeing at the center is the repository of information with respect to a patient, but maybe gathered by episodes or visits or encounters, but both of them wind up having the vision that over time we will wind up having a longitudinal record, which will be multi-episodic, and maybe someday a lifetime health record.
I think we do have to be a little bit careful about using that word "lifetime" health record. That may be a little bit aggressive in the political arena.
DR. DETMER: We're having trouble reading your black boxes. Are you in the slide on the NHS?
MR. BLAIR: Actually, I'm even referring to the NHS and to the amalgam of visions within the U.S.
DR. DETMER: Somehow we have one handout that we can't see the boxes, and another handout where we can. So I don't know -- do we have the visuals that go with this?
DR. DEERING: I don't have anything. He just brought those in.
DR. STEIDEL: Yes, I brought them. They were on the Web. I pulled them off.
DR. DETMER: Do you know the URL, Jeff?
MR. BLAIR: We have it on the Medical Record Institute; nedrecinst.com.
Can I just give you the bottom line on slides seven and eight, which was that the center was the electronic health record. The primary user of that would be the provider, and then the secondary users would be clinical research, public health research, reimbursement, and administrative uses within health care institutions. So that's basically the point of that.
The next slide there is a depiction of a triangle, and I refer to this as aspects of the health record. Are we on the same slide? Okay, the next seven slides in this section are concepts that we derived several years ago when I was on the Patient Record Institute Concept Model Subcommittee. I don't think they have changed too much. This is kind of high level. The way we broke it down was just to try to articulate and get consensus on what some of these thoughts were. So I'm not trying to set forth something that can't be looked at in other ways.
But when we did this, we broke it down in terms of aspects and functions and characteristics. On the aspects, we used that little triangle there. We indicated that there were three different aspects, content, time frame, and information representation.
The next slide, which I believe is slide 10 is the content. As you can see by that slide, it pretty much includes everything that has been in the traditional medical record, but it expands it, or at least hopes to expand it over time to include wellness information and behavioral information, and maybe environmental information as appropriate. Sources would be all of those that you see listed.
Why don't we go on to the next page, which is the time frame. I have kind of alluded to this. It would be multi-episodic, eventually leading from prenatal to post-mortem.
The next one is information representations. There it isn't just that it's data and text and graphics and images and audio. I think the main thing here is that it would have the kinds of information representations that would be clinically specific, so that it really would be able to facilitate information exchange, to be able to measure quality, and improve clinical processes that we have never been able to do up until now. I think that's the major significance of what we are looking for in the vision of the electronic health record.
The next slide is going to be talking about the functionality and characteristics. We happen to have organized these simplistically into information capture, information storage, information processing, information communication, and information presentation. Underneath each of those topic areas of course are many different application functions, and they do become interdependent. This was a way of at least glancing at that.
Then in terms of the characteristics, this is where you again, begin to get somewhat different from the way we have looked at the traditional medical record, because now you have characteristics where you expect that record to be available 24 hours a day, seven days a week, especially in acute care environments.
You expect it to be far more reliable. You expect the data integrity to be much higher, because you are not going to wind up having handwritten notes. You are going to expect it to be more accurate, more secure, and in fact, we would hope more useable, because if it is not more useable, then it's a burden, and clinicians would be deterred from adopting it. So those are the basic systems characteristics.
The legal characteristics that we observed was retention of records, and confidentiality, and authentication.
Are there questions at this point on these basic areas of the aspects, the functions, and the characteristics? Any surprises here? Is this pretty much consistent with what people were envisioning?
MR. RILEY: I have a question under the legal aspect of that. Are you including the concept of evidentiality as a part of the archiving function? How do you address that? Attestability, evidentiality, is that included in some of the words that you have there? I don't have the slides in front of me right now.
MR. BLAIR: We didn't get down to the details of all of the legal issues, but whatever would be legal issues would be included. So I'm waffling on the answer.
Now clearly, while this was very simplistic, and I was able to take you through this, just like a lot of other things, you do the types of things where you can get consensus on, so it's at a high level. But clearly, there are an awful lot of functions and features to assist them to be able to do this.
This is not easy to do, especially in a dynamic environment where the concepts of how to practice medicine are changing, medical terminology is changing, drugs and medicines are changing. You have to be able to design this in a manner where it could be updated continually, and where there can be continuity, inversioning. That's why it has been so difficult for vendors to be able to achieve this vision, even though they have been pretty much working at it now for I would say 7, 8, 9 years.
Should we go on to the next section, which is the major implementations? Okay. You'll notice that the ones that I was able to gather information on for this particular presentation were Australia, Canada, the European Union, the United Kingdom, and the United States. I'm going to slide through these rather quickly.
In terms of Australia, which is the next slide, the major thing there is they have come up with a national health information model. They have based on ISO standards for meta-data. I don't know if Bob Mayes is there, but Bob Mayes has taken a look at what they have done in Australia to see if that might be applicable for data registries here in the United States within the Department of Health and Human Services. I should also indicate that when I was in Europe, a number of the European countries also feel as if this might be a good example to step forward on.
The idea of meta-data is to be able to have data definitions in terms of roles and classes and attributes and many different specifications, so you are not just having a single data element.
Are there questions on Australia, or should I go on to Canada?
DR. DETMER: I don't know how clear the meta standard concept is to folks. It's probably worth talking about that a little more. Bill, you may want to weigh in on this too. Do you have more you would want to add first, Jeff?
MR. BLAIR: Other than the way I've hit it right now, my knowledge in this area is limited. I think Bob Mayes is more knowledgeable on this. If you want to go into greater depth on this, I would kind of call on Bob to take it in more depth.
DR. DETMER: Bob is not here. Bill, do you want to add?
DR. BRAITHWAITE: Well, obviously the concept is fairly simple, but it's the higher level look at the characteristics of the data that you are collecting, but not the data itself. So you are looking at like a data dictionary which describes how a person's name is structured. That's meta data in this sense.
If you agree on exactly on how an address works, then no matter where you use an address in the database, you refer to this meta-data about addresses as a description of what addresses are, and how they are interpreted, and how they are checked, and how they are used, and all that sort of stuff, and that's all called meta-data.
DR. DETMER: Okay, Jeff.
MR. BLAIR: It just occurred to me that I kept mentioning one thing early on in the presentation, and let me just kind of get it in here to get the linkage. The linkage was that when people have looked at the health care information infrastructures, they have felt that their electronic health records are a core component of health care information infrastructures. That seems to be consistent. As we step through a number of the country initiatives, you will begin to see that relationship.
Let's go on to Canada. Richard Alvarez in Canada has set forth a strategy for health care information infrastructure there. He is with CIHI. I think that's the Canadian Institute for Health Information. It calls for pulling together some of the major different projects and initiatives in Canada, and setting them forth in a way where they can begin to utilize standards to be able to create a framework for health care information infrastructure. It also puts some emphasis on trying to create national databases to support protocols and guidelines.
That is obviously at a proposal stage, so it's kind of similar to our own. The encouragement of electronic health records is of course another major element that is there in Canada.
Shall we go on to Europe?
MR. RILEY: Is there a point of contact or Website where we can pull information down about the work that they are doing?
MR. BLAIR: Well, actually I ended up calling Richard Alvarez directly, and he faxed me a copy, because we couldn't get a clean copy. Mary Jo, is she there?
DR. DEERING: I have a copy of the original paper in a group here. It's right on top. But also at the tail end of the original vision paper there is a Website that you can go to. It doesn't have this particular paper in it, because this was a paper that was prepared at a conference, but it has other information about the Canadian initiatives.
DR. FRIEDMAN: There are a couple of different Websites. One is the CIHI, and the other is if you go to Health Canada and you do a search on the Canadian Advisory Council on Health Infostructure -- Statistics Canada -- you can get to their September/October 1998 report.
MR. BLAIR: Going on to the European Union, there are three slides that we have there on the European Union. Of course they approach health care more from a top-down viewpoint than in the United States. You see that reflected by the funding in the projects that are there.
They have -- I'm questioning from the time span here -- I think my inclination is to just let you be aware of a number of these things in order to stay within the time frame here. What you will notice on those slides is they have projects that many of the vendors and consortiums in the United States do in the private sector, but in Europe they wind up having these as funded within the European Union.
There are things like the Good European Health Record Project. There are items like synax and synopsis. Synax are like demonstration projects. The other types of things are to try to set up client server architectures to support electronic health records.
If you go on to the second slide of the three you will see the Gamen(?) Project has characteristics that are similar in some ways to the things we have been doing with SNOMED-RT here in the United States, in terms of trying to develop a convergent medical terminology, one that could be kind of like a reference. They have gone a little bit further in developing some of the tool sets to be able to support these. Of course that has been integrated into a number of their projects. They have also developed tool sets for clinical decision support. That is mentioned there.
If I were to go on to the third of the third of the three European slides there, in the standards efforts in Europe, again they were a little bit more top-down. They have done some really impressive work in trying to develop architectures and frameworks, whereas the standards efforts in the United States have been more pragmatic, where the vendors get together and say how do we make these two systems talk together, or how do we come up with a data set or code set that we could use right now?
So many of these -- it's the slide that talks about the Committee European du Normalization, CEN, with a four word group, that are focused on information models, and the terminology and knowledge bases, the data security, and I guess communications, and technology for interoperability.
For the most part, you find that these are referenced quite a bit in Europe, and they are guidelines and frameworks, as opposed to standards that are actually being implemented by vendors.
Are there questions on Europe?
DR. DETMER: That was the thing. Actually, the European Union invested a lot of money in from the top, and it took really a long time. I think for some time it was not considered that maybe it was going to be that helpful or go very far. But I think what is happening is some of these things are rolling forward, so that architecture framework is actually starting to fit kind of nicely in a complementary way to the way the U.S. has kind of gone at it.
MR. BLAIR: Don, I think that's very true.
Let's go on to the United Kingdom. The United Kingdom I think has been very proactive in setting forth a defined strategy, the national health service information strategy. As you may know, they have had a coding system in the United Kingdom called the Reed(?) System, which has some similarities to SNOMED international. I'm not talking about the reference terminology so much as SNOMED per se, which is clinically specific code sets.
They have been encouraging its usage by the GPs in ambulatory environments. They are moving forward now. I think it's like a 5 billion pound funding for this over a 5-10 year period, to be able to go forward both in an ambulatory environment, as well as acute care. The emphasis is on ambulatory environments, however.
Unless you have questions, based on time, I would move forward. Are there any other questions on these two slides for the National Health Service in England?
DR. DETMER: Back to the U.S.
MR. BLAIR: Now this, I think to put things a little more in perspective for us, because when you do look at the U.S., what you see is this very rich list of standard initiatives in the U.S. that while they still fall short of the ideal of interoperability, and the ideal of clinical specificity, and the ideal of entire data security, nevertheless, these are implementable standards.
Not only have they been implemented in the United States, but if you take a look at HL-7, I think there are 9 or 11 countries around the world that are now implementing HL-7. There are at least 13 different countries that have implemented SNOMED international, which is translated into I believe, 13 different languages.
What you see as you look at this is it covers a good part of the waterfront, at least for what might turn out to be the first phase of an information infrastructure. The reimbursement areas, clearly we have been working with that on the committee. In terms of clinical message format standards, HL-7 takes the leadership in that. In terms of communications between medical devices and bedside systems there is IEEE. You want to see NCPDP for retail pharmacies. ASTM has done a lot of work with standards that have been precursors to HL-7.
There are consortiums that have been moving forward, trying to develop object-oriented standards, and see you CORBA MED, and all the working groups, CCOW, which is now part of HL-7.
The other piece that is of interest I think to us is that as we begin to look more at the Internet, there are tool kits that have been developed for Java and Active-X which will probably lead to some health care information objects-oriented standards during these next several years. We haven't seen those yet, but now that those tool kits are available, I think that may happen.
I think the reason that's important to observe is that the traditional syntax that is used from the rest of those message format standards may be modified. They may be modified to be either more object-oriented, or they may be modified to use XML, which is a derivative of SGML, standard generalized mark-up language, which is a way of tagging different data elements and textural areas within documents, and using that as a syntax. So there are some advantages to doing that.
I don't think I need to spend time today in going into more details on that, but at least you get a feeling here for how the U.S. has something a little bit different to offer in some of the other countries. Each country or region of the world I think is offering slightly different things here.
This comes to a close of this section of the presentations. Are there questions before I go on?
DR. DETMER: Just any one liners on Japan?
MR. BLAIR: I just didn't gather the information on Japan. That is an omission -- an obvious omission. I wish I could have gotten information, but I don't have it.
DR. DETMER: I'm going over there next month, so I'll try to plug you in when I get back.
MR. BLAIR: Any other questions? Let me go on to the next section, which is the essential elements. I don't remember exactly the slide. The point I was trying to make I think on this first slide within this section is that I wasn't going to address in this presentation the underlying information infrastructure, which would involve hardware and networking standards that are not specific to health care.
I wasn't even going to address the more global issues of a health care information infrastructure. I indicated on these first few slides here that I'm going to drill down to just those elements of standards that might facilitate some basic functions for electronic health records.
The two that were in my mind as I was doing this was just the ability to share an electronic health record internationally to support global travel. Just as individuals travel from country to country, if they require emergency care, can we at least get that record communicated between different countries to different health care institutions?
The second basic element of the first phase that I envisioned was telehealth at a very preliminary level, to be able to provide care to underserved populations. So I started, as you begin to look through this section, to say if we were to look at the aspects and the functions and the characteristics that we defined in the vision section, which of those areas would be necessary for a first phase?
I identified the content area. We didn't have basic minimal standards for content, minimal standards for communications, minimal standards for concept representation or medical terminology, whatever you want to call it, minimal standards for security.
Then what I did from there is the next section in the presentation which basically says if those are the four nucleus areas that we would look at first, then what can we pull from the work around the world that would begin to fit to give us answers for that? At this point, unless you tell me differently, my inclination here is I think this begins to go beyond what you want to accomplish today. Is that correct, Don and Mary Jo?
DR. DETMER: Yes, I would think so.
MR. BLAIR: I don't think there is any need for me to then continue on here, but hopefully the portions of the presentations we have reviewed I hope would be useful.
DR. DETMER: I think it's very useful. It's obvious certainly the standards work group gets into a lot of this, so we are not really interested in getting into the nuts and bolts I think, as this work group, in some of those smaller subcategories anyway.
What other questions or comments do people have?
DR. DEERING: I think I'm going to be very honest and say I think what this challenges me immediately with is what do I take away from this that I can then go put up on that sheet there? It's not a function of just one patient's health record. It's going to be the same question that we ask ourselves; are we focusing on core content areas? Are we listing a whole series of issues?
I believe in our original table we had focused on mostly what the content of each of those records might be. But we also had a couple of bullets I think under each of them as to what their functionality or purpose might be. So again, it is thrown back in our laps to decide what do we take away from this that we might want to add now under our list of "core elements" of the electronic patient record?
MR. BLAIR: With respect to that comment, I couldn't tell who was talking there.
DR. DEERING: Mary Jo.
MR. BLAIR: One of the other things, and I'm not exactly sure how to deal with this right now, but if we start to go forward and create any scenarios, then although this simplistically states the vision in terms of aspects and characteristics and functions, you then wind up getting specific scenarios where you get into different medical domains, and you also get into different health care settings, whether it is acute care, or ambulatory, or long-term care.
I tried to stay away from getting down to that level, but just should be aware of that. Keep that in the back of your mind as you start to go forward with other discussions on this.
DR. DETMER: I think -- at least, I don't know if I want to get into it now -- but I think I've got some answers to your questions from what I've heard, so I think we can deal with that.
You'll be with us all day, won't you, Jeff?
MR. BLAIR: Yes, I will be listening in all day.
DR. DETMER: I hope you will be weighing in all day as well.
MR. BLAIR: Okay.
DR. DETMER: That's good. I think that's fine. Any other questions at this point? If not, I think we will move on to Dan's speech. Further questions or comments for Jeff?
I think this has been very useful. I see at least maybe a half a dozen of these screens of yours that are going to be very helpful to us. So thanks very much.
MR. BLAIR: Thank you.
DR. DETMER: The whole thing I like, as far as that goes, but I mean relative to our task today.
MR. BLAIR: Now what I'll be doing is I'm going to put my phone on mute, so it may take me just a moment if you ask me a question, for me to respond. This way at least there won't be any noise here that will travel to the phone.
DR. DETMER: Okay, Dan, take it away.
DR. FRIEDMAN: When I got the agenda from Mary Jo, I was somewhere between puzzlement and panic when I saw my name next to this topic. It's not as if at least in the U.S., as far as I know, we've had any rat brain for what a population health record is, and as far as I could come up with particularly good references in other countries either.
So what I tried to for myself --
DR. DETMER: It's fascinating in and of itself really, isn't it?
DR. FRIEDMAN: It is. I may be missing something. I may be missing something in the country, and I certainly may be missing something internationally, but in any case, what I tried to do for myself was really try and clarify what I was thinking of when we were developing the concept paper in terms of what a population health record could mean, and go from there.
The first element that I'm going to start us with was trying to say to myself, hey, what are we talking about when we're talking about a population health record? At the most basic level, obviously we're talking about a record of a population with two key elements in the tautological definition.
The first being, what are we talking about when we're talking about health? This very much reflects what Jeff was saying. When we are talking about a population health record, I think it's really essential that we be very explicit that we're not talking about only an illness record, or only health events records. That we are talking about essentially a much broader definition of health similar to the old, but very useful World Health Organization definition of health as being a state of complete physical, mental, and social well being, and not merely the absence of disease or infirmity.
The second part of that tautological definition is population and population-based data. This is another one of these terms that certainly we in public health, we on the committee bandy about, but in fact when we start pushing it around a little bit, we're often talking about somewhat different things.
One of the classic definitions of population-based data -- this is from John Last(?) -- where he is referring to data pertaining to a general population defined by geo-political boundaries. The population is the denominator and/or the sampling frame. Now this definition, while standard, I think is a little bit too limiting.
When I was thinking of population-based health records and the population part of that, what I'm thinking about is a known denominator -- this is also very tautological -- representing a known population. In other words, not just a collection of folks who happened to walk into the hospital or happened to agree to a clinical trial.
Known population meaning that they have known characteristics, and any data on a sample of that known population is in fact generalizable to a larger population. The intent of this is to say that this can include not only a geo-politically defined population, i.e., a city or town or state, but can in fact also include a demographically defined population. For example, an ethic group, if you happen to have a sampling frame, and you happen to have demographic characteristics for that sampling frame.
It could also include members of a health plan, where they are enrolled members, and you happen to have demographic data on them. So in other words, you have a real denominator, and real information about that denominator.
DR. DETMER: So simply just adding up X number of individuals, and calling them a population without those other kinds of things being identifiable does not meet the definition?
DR. FRIEDMAN: Does not meet the definition in terms of differences between for example population-based data and clinical trials data. What I think of as population-based data encompasses both what we talk about as health statistics, as well as what we talk about as public health surveillance, with health statistics being another one of these terms that has in fact really remained undefined.
What I think of when I'm thinking of it is health data generalizable to a known population used for designing, monitoring, or implementing or evaluating health policy or health programs. So it's really policy and program directive data, in contrast to public health surveillance, where the emphasis is -- and this is a classic CDC definition that I'm sure at least a couple of you have committed to memory many years ago -- of ongoing systematic collection, analysis, and interpretation of health data essential to the planning, implementation, and evaluation of public health practice, with the emphasis on public health practice, closely integrated with timely dissemination of these data to those who need to know. The final link of the surveillance chain is the application of these data to prevention and control.
So when I'm thinking about population health records, I'm thinking about health statistics, i.e., population-based data useful and intended for policy and program development and evaluation, as well as surveillance data much more immediately oriented towards public health interventions.
Just to ground it for a minute, examples at the most obvious levels being health interview survey, for example, BRFSS, vital communicable disease surveillance data, classical discharge data sets, where we have them for a defined area, Medicare records, where in fact we do have a defined population by characteristics.
In thinking about what population health records could consist of, if we can think both in terms of individual records, which would be my preference, and which I'm much more comfortable with, or in terms of population area records, or some combination of those.
The Manitoba has an information system that in fact seems to be a combination, where they have got, from what I can tell "administrative" data that cuts across different types of health care interventions. I think it also includes pharmacy. I think it includes hospitalization. I think it includes ambulatory.
But from what I can tell at the individual level, it does not include at the individual level what we think of as here as public health surveillance or health status information, or census data. Those data there seem to be found in a small areal level.
But what I have been thinking of is population health records in terms of individual records, which as Jeff has said about the electronic health records, would need to be -- ideally would be longitudinal over time. This is something that the Canadian Advisory Council on the Health Infrastructure has really emphasized in their report, which is a terrific document.
What they have talked about that the importance of using longitudinal data as the only means in fact for really evaluating what is the long-term impact of health in social programs. At the most extreme, as Jeff said, it would be life long data, covering all aspects of health, all aspects of health care, and all transactions between the individual and the health care system.
One of the things that really tends to happen I think both with our administrative data and with our surveillance data is that in fact on some types of things we really lag behind what is going on out there. We lag behind not so much in terms of how long it takes to have the data reported to us, analyzed, et cetera, et cetera, but lag behind in terms of our systems are so past focused that there are major aspects of health care that we just don't necessarily pick up until we're sort of past the curve.
One of the things that struck me most recently was the JAMA articles about "alternative" medicines, where there is apparently a huge individual investment being made in people going to "alternative" practitioners, alternative medicines, et cetera, et cetera, and at the same time none of our regular public health surveillance health statistics surveys picked up any of this, as far as I can tell, because we hadn't thought to ask the question. So major things fly in the radar.
Population health records I would think need to be person-based, obviously population-based, scalable. In fact, when we are talking about population health records, we are talking about locally collected records that need to start at the smallest possible unit, and scale up.
And also obviously minimizing a data provider burden, particularly in the sense that right now we have surveillance data. We have administrative data. We have got health statistics data, all of which are reported obviously on the same people, on the same subjects, from the same providers, with just sort of a rat's nest of repetition.
MR. BLAIR: Can I ask a question?
DR. FRIEDMAN: Sure, Jeff.
MR. BLAIR: The phrase "person-based" and maybe you've got it on the graphic there, and I just am not able to see it, I'm trying to understand that a little bit better, because I have tended to think of the population health record as being derived from a large number of individual health records.
When you say something is person-based, do you mean derived from individual health records, or do you mean that they would be a population-based record at an individual level? If it's the latter, then I don't quite understand that.
DR. FRIEDMAN: To the extent that we want to gather longitudinal information that integrates information on health status, health behaviors, health events, and health care, I think that sooner or later we are going to have to grapple with trying to get all of that integrated at an individual person level, rather than less integrated at an ecological level.
Is that clearer, Jeff?
MR. BLAIR: Some of your words got cut out. I'm sorry, so I missed some of them as you were saying that. Could you get a little closer to the phone? Sorry.
DR. FRIEDMAN: No, that's okay. To the extent that we are talking about -- if we are talking about trying to obtain integrated information over time that would include health status, health events, health care, and essentially transactions between the individual and the health care system, it will be much more powerful and much more useful if in fact it is integrated at an individual person level, rather than being essentially a collection of different data sets that describe a census block group, or residents of a particular city or town.
DR. DETMER: So you are saying allow a unique identification, not necessarily being interested in Dan, but knowing that you are dealing with this person that's got a name?
DR. FRIEDMAN: Yes. Sooner or later if we really want to talk about population health record, I think we're going to need to squarely face the issue of what are the pluses and the minuses, and from my point of view, acknowledge that individual-based population health records may in fact provide much more information. We may not be able to or be willing or want to deal with that. Or there may also be alternatives.
DR. DETMER: Right. I just wanted to make sure I understood you, and I think I did.
MR. BLAIR: Thank you.
DR. FRIEDMAN: Obviously, the most basic prerequisite is a legal and regulatory framework that would guarantee confidentiality, guarantee security. Another basic prerequisite is obviously linkage enablers, and obviously standards. There's no sense to go into that.
When I think about population health records, what strikes me as a use is essentially much more integrated intervention, where sooner or later we are not differentiating health surveillance data from health statistics data, or necessarily not even differentiating from clinical care data or administrative data, but we're talking about essentially a unitary data system that can be used for a variety of purposes that will obviously have health policy uses.
One possible avenue that I think is worth thinking about that the Canadians seem to be thinking about is the development of sample-based pilot population health record systems. This could either be plan-based. It could be geographically-based. They could be based upon -- certainly include an informed consent element, but I think that if we are going to move forward on this at all, the only way in which we would be able to do it is in some of small pilot-based effort, if it is going to be individual person-based. I think if it is going to be areal-based, then there is a whole other realm of possibilities.
DR. DETMER: Questions and comments for Dan? I assume in the last one you are talking about sort of Framingham thing?
DR. FRIEDMAN: Yes.
MS. GREENBERG: Can we have copies of the slides?
DR. DETMER: Yes, I think we will be wanting those this afternoon, without a question.
Other comments?
MR. BLAIR: May I ask if I could get a set of the presentations either mailed to me, or maybe if I could get them at the February meeting?
DR. DETMER: Sure. We can mail them to you.
MS. GREENBERG: We could even fax these to you, if that were feasible, if they are going to be used this afternoon.
MR. BLAIR: Oh, that would be great. Should I give you my fax number, or you may already have it.
DR. DETMER: We have it.
MR. RILEY: There may be a group of ongoing studies that already do what you are talking about over in DOD. After they got beat up on the Persian Gulf illness fiasco, one of the things that we did was institute a massive collection of data at the individual level for those in Bosnia, and for those who are now deployed to Southwest Asia.
So the data sets may already be collected at the level of granularity that you are talking about. It will just be interesting to follow longitudinally what the outcomes are of that. But there are some large populations that are apparently being followed like what you are talking about here.
DR. FRIEDMAN: I did not think of that. I think you're right, that's probably the single U.S. model that we would have.
MR. RILEY: It includes things like health risk appraisal evaluations. There is surveillance data. There is environmental data. We probably know more about the environment there in Bosnia than they ever wished to know in terms of what has been collected sample-wise.
DR. DETMER: Excuse me. You came in after we initially introduced ourselves. What is your name?
MR. RILEY: I'm Dave Riley. Col. Lynn Ray(?), over at DOD Health Affairs asked me to sit in as his representative.
DR. DETMER: I'm sorry I didn't ask you to introduce yourself earlier, but we need to do. That's Dave Riley, Jeff -- I don't know if you could hear that -- asking that question.
DR. BRAITHWAITE: I think it's interesting from Dan's presentation, it points out the thing where we sort of started. The emphasis that the population record -- that people who are interested in population records are simply looking at the same data as the people interested in clinical records for individuals. They just look at it in a different way, for different purposes.
We have to be aware of the fact that the population-based health records do depend on -- totally depend on the availability of the individual records for aggregating and linking together about other information in order to improve the health of the population. We can't think of the population health record as something independent from or separate from the individuals.
DR. DETMER: Well, partially. Things like HANES and so fort is the population in a record in a sense that is different. It is coming typically out of clinical --
DR. FRIEDMAN: It certainly is, but it's a snapshot.
DR. DETMER: I understand. I'm not arguing with you. I'm just saying that in a Venn diagram sense, those things don't totally overlap, but there is a lot more overlap than I think is generally appreciated.
DR. STEIDEL: But if you had a record like was described, you won't need HANES.
DR. DETMER: I agree. On the other hand, you also have to have a system, however, that is attracting alternative medications and such, which a clinical setting doesn't necessary track either. You think it would.
MS. GREENBERG: Actually, Steve, I think you still would need something HANES, because you are unlikely in health care, even a person's lifetime health care doesn't necessarily collect some of the information that you collect in a study like HANES on a sample of people.
DR. DETMER: Well, whether it's HANES or something else, I guess what I'm saying is you may still want to do discrete studies focused on particular things that isn't typically in there, but could have some relationship to health, or you are wanting to know if it relates to health.
DR. FRIEDMAN: But it would hopefully be integrated.
MS. GREENBERG: Linked, right.
[Technical problems with the telephone connection are being addressed.]
DR. DEERING: Well, let me just start talking while we are waiting for this to come up. You had you package, Homes pages from two activities talking about consumer health records. The third was a piece on Dr. Koop's dot com, and a marketing study where I have indicated in the margin the fact that they too are intending to create a personal medical record system.
By way of background, as I begin to pull some of this up, let me just say that as Don has said, this does seem to be a very rapidly growing area of interesting. Namely, to give patients their own medical record or health record, or health information collection. There are different formats for it. It is defined differently by who is offering it.
What we are going to take a look at today are a few of those models that actually do attempt or purportedly attempt to be helping you track some of the core elements of what you would give in a patient history in a record of care.
The purpose behind most of these of course has been to enable consumers to keep a comprehensive record of their individual and/or family health. The secondary purpose was to enable them to share their history in a consistent fashion with a variety of providers, and to enable them to make better decisions about personal health or medical care.
Some of the factors behind this, on the consumer side it's of course just a reflection of the broader movement toward consumer health activism and consumer health empowerment and self-care, frustrations about losing records. I don't know how many of you are parents, and even if you are M.D.s, have you really kept your kids' immunization record handy. And to go into a new provider's office and to have to fill in the form each time, and not know whether you have remembered it correctly from one day to the next as to what your grandmother died of.
On the market side, meaning the people who are putting these up, to date there hasn't been a commercial market interest behind it in that no one yet is charging, at least those that are up and running on the Web by definition are usually free, but they come with some sort of registry behind them in many cases.
There is a sense that there is this interest, so it is a service. It is a way of attracting people to what are otherwise gateway health sites, or sites that are trying to present health information, most of which are advertiser-driven by the way.
On the policy side, there is an interest in terms of portability and consistency. I guess I would point out here the comment that was raised, and I think Dan you raised it. If we are aware that one-third of the people report going to an alternative medicine provider, probably totally out of plan, paying for it out-of-pocket, there is never going to be any record of that care.
If it does represent a significant quantitatively, if not qualitatively, a proportion of health services that are being delivered and a reflection of health status, then again, no plan driven record or top-down record might necessarily be able to capture that kind of information on a consistent basis.
I originally said there were two models, and I will tell you about a third in a moment. I used to say that there is the Quicken model, which is the individual enters the information according to a standard template, and keeps it at home in one form or another. There is the Turbo Tax model, where you plug that information into something on the other side, and we're going to look at one model of that.
But more recently there has interest in a model which other people call the Visa model. I'm sorry that Claudener(?) isn't here. I think you are familiar. I think the government people are looking at that. But not only are the government patient record people looking at that, but there is a group out in the private sector that is trying to look at what they call the Visa model, which is a non-medical entity that acquires credibility, and that maintains the warehousing and clearinghouse efforts on behalf of individuals.
So they are exploring that model. I'm hoping that perhaps if you are interested, we can get greater information on that on February 2.
So some of the models that I wanted to show you to start with are -- this comes from the AMA. It is probably one of the most comprehensive. Jeff, I can certainly send this to you. It's on the AMA site, and one way or another we'll get you the URL. The important point here is that it follows not surprisingly that the classic patient entered health history format.
It is entirely generated online, everything from: name; place of birth; medical history; conditions; previous operations; previous injuries; and medical conditions; including medical illness; prescriptions; non-prescription medications; social history; exercise; risk factor elements; vaccinations; family history; lists of doctors; and health insurance.
Now while this one in some ways is one of the more comprehensive of the forms that is online, interestingly enough the AMA doesn't try to keep this for you. What you do is you enter it, and then you print it out. You keep it online and you can make corrections that way, but to the best of my knowledge, it is not actually maintained in a repository at the AMA.
PARTICIPANT: What do you mean when you say "keep it online?"
DR. DEERING: In this case you don't keep it online. You enter it online, and they do the processing for you. Then when you are done it says push print. Then it prints out what you have.
DR. DETMER: That's the only option?
DR. DEERING: Right.
DR. DETMER: You can't download and file to your own?
DR. DEERING: Right. I checked it out. I wasn't able to. I don't know if it will let us do this without it filled in. It says, "Do not print. When done press send to summary button to verify data."
Now undoubtedly since this is an online form, of course you can save to file, and then you would save it on your own hard drive or disk. Now you can see everything is blank here, but this is what the summary ends up looking like. Again, since I filled out nothing, it's whatever was in there.
This is what would print out, or this is what you could keep. Then you would edit it offline at home, to keep it updated. So this is the model. Are there any questions about this approach?
I'm going to take you to Vital Works, which is one that was given in your packet, which without registering -- I didn't actually go into this one, but I wanted to indicate the services that it is providing, which is the health tracker server, the health tracker patient card, and advanced directives.
What this one will have in common with what I believe will eventually come out of Dr. Koop's site, and which is common to another site that I'm going to show you in a minute is that in many instances that they are trying to do is just get you registered online. That's why they can justify doing some of these services, is that they want to then be able to market directly to you online. I don't have specific background about the Health Tracker Corporation though.
I also have a copy of the Dr. Koop page. Dr. Koop, as you saw in the handout, the intent at this point is to create a secure online medical record. It is not currently offered. But I wanted to just call up the Dr. Koop home page so that you see what the front pages of many of these services do look like. It's a multi-purpose health information, pharmacy registry. You can renew pharmacy prescriptions online. You can participate in chat groups. You can e-mail questions to a doctor online. So this will be your all purpose personal health site.
There is something else called health central.com that I thought she had put in favorites, but it must not have gotten there, so let me see if I can just go directly into it. I can tell you what Health Central -- its home page is very similar to Dr. Koop. Again, it's trying to be a multi-purpose source of information and transactions. These sites are increasingly noticing that people value transactions like pharmacy refills.
For that matter, the Kaiser Permanente group has begun a fairly multi-functional Web service for its beneficiaries, which to date does not offer the health record, but does offer a variety of transactions. Again, the business case behind these models is one of customer service and marketing, as opposed to any policy or clinical purposes at this point.
What the Health Central site includes is the same information as the AMA, but it is divided into groups of what your medical history is, of what your doctors are, of what your social history is, and various risk factors. Most of them do include the risk factor profile as well, and will give you a very simple health risk analysis online that says you are at high risk for.
The benefit of this is that many people of course can't probably fill in their cholesterol number. So at least it is a teaching tool, as well as an information repository, and reminding people of the sorts of facts that they have to have available.
DR. DETMER: I might add, I think the first generation of most of these Web sites were essentially trying to get people just specific medical information, almost taking medical textbooks and trying to transpose it into a way that people can just get medical facts.
Now I think you are seeing much more of a second generation or third generation that is starting to try to get far more interactive, and starting to look more at health management and also illness management increasingly.
MR. GELLMAN: Are these sites advertiser supported?
DR. DEERING: Yes, most of them are advertiser supported.
Don, you might like to help us work through this one.
DR. DETMER: I have demonstrated this. This is a company that I had started, that right now is out of financing, so there is no conflict here. I also told her that I didn't suggest it. If she brought it up on the screen, she brought it up.
DR. DEERING: Could you be talked into demonstrating?
DR. DETMER: Yes.
DR. DEERING: I'm handing out, Jeff, and I will give to you just a printout that lists the product. Maybe I'll have Don talk us through the product.
DR. DETMER: The concept of this was to actually have a cluster of records that interfaced with one another. So that in fact if you go to the products, the first product is the personal medical record that the patient stores, and they control how securely they want to keep their own data. In other words, they set the standard on what goes out of their record, what the keep at home. They control up front, what they put in it, and what then also goes out.
But it also gives them a fair amount of information on just a general health risk appraisal. Then where they do know specific health problems, being able to get hooked to Websites that relate to their specific illness. In the future of course, you could get into even medical management interface kinds of things with that.
The second product takes then the patient's guidelines on what they are willing to see go, and allows it to go to their physician of use in two formats, one, the patient data going to the physician as the patient has put it in, but in a summarized form. So the report comes out as saying this person hasn't had a pap smear in three years or used to be hypertensive, and now isn't on medication.
So it kind of gives an HMO or a physician getting the patient for the first time, a sense of what are high risks early, or even before they have seen them in an appointment, so that you make sure that at those things are kind of red flagged even before they come in.
The other thing, you allow from the clinician's side, the doctor would say to the patient, look, I need to see you in three weeks or a month. You go to my Website and schedule when is the best time for you that I have open slots. So that it is a matter that you have this interface through the Web that allows the patient to interface not only on data, but essentially on process of care as well.
Then the idea is that you also then can have follow-up outcome data at home. For example, if the patient is on certain medication and you want to track certain things, they can track those things and enter that sort of thing at home. That's essentially is a handshake between the doctor and the patient.
Then if you go to ProFiles, which is the third set of products, it essentially strips off personal identifiers and actually allows the clinician or with personal identifiers that doctor can look at his patient population with identifiers. But if it is going to go beyond that, then a unique identifier for the patient is stripped off, but you could then look at a system level of aggregate covered lives in terms of we have in this population of 5,000 people, 60 of them that are smokers that want to quit, and so many of these, or so and so.
So it's a way of being able to get essentially some denominator information for not only from the perspective of either a buyer or a seller, a physician group for example, trying to decide whether they would want to take a group of patients. What is the risk, exposure if you will, of that? That would also obviously have some financial implications of how healthy, and if you will, how much risk exposure you are getting if you take these on as a company.
So essentially what you are dealing with is a way to try to have in a way, an interface function really for meeting a variety of functionalities. For example, the patient also would have in that a button that would help some of these functions that you were talking about at Kaiser -- how to use it. What is my health plan? How much of my deductible have I already used up? A lot of stuff that frankly, doctors and nurses could care less about, but it's quite important if you are the poor fellow or gal on the other side trying to work their way through this stuff.
So it's a matter of trying to meet the various users, getting the things that they would really like as functionalities, but not knowing anything more than they want to, but essentially giving the patient essentially most of the front end control on who gets to see anything. They can set standards on what even goes.
MS. WILLIAMS: How do you authenticate the patient's release?
DR. DETMER: I'm just saying this is a model I'm talking about. This is not a product out there on the market right now. The idea would be you would use a password or some other kind of encryption kind of thing. But as I'm saying, right now we didn't get the next round of capital financing to get beyond the model we are talking about, but that's the concept.
DR. FRIEDMAN: Are either of you aware of any HMOs for example that make this available based upon medical records rather enrollee input? I get a printout every year when I remember to call my HMO for an -- for example, you go in for a physical once a year, once every two or three years. You get a printout from your doctor that is more or less helpful, saying here is your cholesterol, here is this, here are your risk factors, here is that.
There is also no reason why not only to have personal health records that not only are based upon an individual entering his or her information more or less accurately, but also could be based upon the health plan, the HMO.
DR. DETMER: You mean on the data that is in the plan's health record?
DR. FRIEDMAN: Exactly.
DR. DETMER: Go back bectis.com. One of the biggest challenges of getting to the use of computer-based health records is actually getting physicians to enter the information.
MR. BLAIR: Is this a Website that describes what you are talking about?
DR. DETMER: What it is, is a hand held physician entry, computer-based record on a structured format, that then does in fact create about 80 percent of what a general internist would have in their data record. The problem is that that's been just a nightmare generally in health care to get clinicians to either use a structured entry format, or take the time to do it.
So the limitation of having the patient's data put in by the patient is, of what validity is it? On the other hand, the asset is at least you know what the patient thinks the validity is. That's what they think is their story. That's not inconsequential in its own right.
But it also is true that if you take it from the side you are saying, one of the things that this has, and I noticed that the AMA doesn't talk about, are you on any alternative medicines, or are you taking other kinds of treatments and so forth. You do have the capacity in Vhita model to have a fairly robust kind of -- you can construct this also to put in things you want.
As I say, you control what goes out, but it is the other side. But the point is if patients don't mind, and a lot of patients don't mind sending that kind of information to the physician, you have the capacity to see that a practice plan's clinical record for starters, which actually would be a tremendous asset to try and get computer-based health records into use.
HMOs and ambulatory care, frankly, the Dutch and the Brits are way ahead of the U.S. Most of our computer-based health records have been far more in the institutional site. They are typically those nations are behind on the institutional side, but they are way out on the primary care side.
So I think we're seeing this kind of move along, but there aren't many HMOs right now that have this. But there is a lot of activity, without question. Kaiser has been a huge commitment and investment in that direction. Obviously, that's that what the DOD and VA are talking about too.
MR. GELLMAN: Can I make a couple of comments about these things? I mean my reaction to them is that they are services for stupid people, because anyone who would put any information up on a Website -- I didn't see any privacy notices -- but even if they are there, whatever minimal legal protections you have today with records at a high --
DR. DETMER: That's why we need legislation.
MR. GELLMAN: Legislation won't touch any of these things, because it is voluntarily disclosed information to anybody. You can print your medical record in The New York Times if you want to pay for it. You can put your medical record on a live Website and let everyone look at it if you want. If you want to give it to a third party --
DR. DETMER: Why if there's a law against it, and you have said that you don't want these data going out when you have protections?
MR. GELLMAN: It depends on how you write your law.
DR. DETMER: That's why I'm saying if you had legislation.
MR. GELLMAN: Most of the laws that have been proposed would not touch these sites. You can do anything you want with your own information.
DR. DETMER: That may be, but I think you can write legislation that would cover that.
MR. GELLMAN: I don't, but in any event, what this is suggesting, just to work the other side of this very briefly, is if you pursue these kinds of things, what this says is that we can have all kinds of computerized patient records, and the patients are in total control. You are now setting up a system under which a research wants my record? You can come and ask me whether you can have my record.
DR. DETMER: Well, that doesn't say the doctor doesn't have the record.
MR. GELLMAN: Oh, yes, because now we are talking about giving the patients the mechanism of control over records.
DR. DETMER: No, you're saying the patient also has a record.
MR. GELLMAN: Not necessarily. Once you set up a structure where you are giving patients control, I may be able to say I can control what my doctor can look at my record too.
DR. DETMER: Certainly there are people that want that anyway.
MR. GELLMAN: This is creating a mechanism that will make that practical.
DR. DETMER: Maybe, I don't know. I doubt it. I think you are going to find that if you are legally responsible for the patient's care, you will keep a record.
MR. GELLMAN: That may be the case, but the patient may have a mechanism of control or a practical notice for who is looking at the record, and when it's being looked at.
DR. DETMER: There are a lot of bills that want that right now.
MR. GELLMAN: Well, there aren't any. No one has gone that far, but I'm saying this is creating the mechanism that will allow all of that. And it will undermine and interfere with not only physician use of records, but it will really undermine the ability of researchers and overseers to use records, because you may have a degree of patient control that has been impractical up until now. That may be a good thing or a bad thing, depending on what you happen to see.
DR. DETMER: I think right now it's obviously too early to see.
MR. GELLMAN: Yes, I agree with that.
DR. DETMER: It does empower patients. There is no question, and that is of course what is behind a lot of the stuff, as far as that goes.
DR. DEERING: I think it's a question of whether or not anyone can stop it. Clearly, what this committee does and what other bodies have an influence on it, but I think we put this up to show this as being a minority.
I think those using it would probably not consider themselves stupid necessarily, and would see it as a very useful tool.
DR. DETMER: This is the edge of the edge right now. We're still ahead of really where use is, and utility. I think you are right in terms of predicting what will ultimately shake out of all this.
DR. STEIDEL: There is a tremendous amount of patients controlling their own records going on in the pathology community. You have people going into these storefront labs, asking for a test to be run, walking out with the test themselves, never entering the medical care community, or home purchase testing. So there is a lot of that type of stuff going on.
MR. RILEY: They sit in the control seat anyway. They have the option to tell you or not tell you when you are sitting there with that patient. So to say that the physician has control is just absurd. If I decide to tell you something and I do, or if I don't you have to make your best judgment based on the information that I feed you. But clearly the patient is in control. I don't see this as some new trend. They have always been in control in one form or another. It just validates the fact that this is their intellectual capital, and they need to have due consideration for that.
DR. HARDING: You can follow the money. The money from these sites is going where?
DR. DETMER: Unfortunately, this site doesn't have any money. I think to get to your question in a real term, clearly pharmaceutical companies in the last three to five years are trying to move very much from marketing and interacting with health professionals, to interacting with consumers. So this is a way to interface with those people directly, to cut out any middle person whatsoever.
DR. HARDING: So where in that is a statement that say, okay, you bring this stuff here, and a pharmaceutical company is going to use it for marketing?
DR. DETMER: There are I would say, a set of standards emerging, some which in some instances they put up on the front here are our security policies. Here is what you are getting into if you do this. I would say that's a minority of sites right now, but some do do that. Others also say this meets the standard of X certifying organization, but as Bob would say, we don't have any federal legislation frankly, or state legislation in most instances that really even speaks to this stuff. So it's generally self-regulation, but even then I would say we're on the small percentage.
Maybe you also saw recently that 100,000 or 200,000 women actually sent to a group of fashion magazines, very specific personal data. They just gave it to them, when they didn't even say anything about whether it will be used for commercial purposes. It will be used for marketing and a whole bunch of stuff.
So it's very interesting. The fact of the matter is it's a big country, and some really worry terribly about this; other people don't worry at all about it.
MR. GELLMAN: I think that's true. I think that example was Conde Nast, which put questionnaires in their magazines and they got a couple hundred thousand people to respond. I don't know how many surveys they sent out, because they wouldn't reveal that, but it turns out that a guess is that they probably got a modest response rate.
If you look at the polls, you find that 20 percent of the people have no interest at all in privacy, and they will fill out anything if they think there is something in it for them. That's basically seems to be there.
Of course the other issue is always in all of these things does anyone ever tell the truth? The polls show that people are lying more and more online and in other circumstances.
DR. DETMER: Which gets to your point. At any rate, I say it varies, Richard, from what you would consider at least responsible, to self-regulation, to nothing whatsoever.
DR. DEERING: I think that is where the people who are just beginning to explore the Visa concept are also asking themselves what processes -- what political processes, what educational processes, what marketing processes, what transactional processes -- need to occur for us all to accept putting that information online.
I wouldn't be the one to equate that with medical information, but they are still saying that clearly when that started out, it wasn't given a future at, because people raised what they thought were considerable barriers in terms of its acceptability to the various stakeholders. So they are trying to now tease out where there are similarities or not that might be useful in looking at that kind of an approach.
I think what drives that is it's not so much an ideology of consumer empowerment, although that too, as the sheer issue of portability, consistency, as much as the others.
DR. HARDING: I think to have this brought in at the first point and so forth, would be very helpful. It's just that is there a secondary purpose? Are patients willing or smart enough or just being a fool to allow it.
MR. RILEY: That is probably where legislation is most useful. If you put these sites up like this to gather this information, that you have a full and open disclosure of what the intent is with the information. If you look at consumer behavior with credit agencies for example, there are two things that really tick people off. One is that they have incorrect information in there. The second thing is that these companies are making money off of their information.
Again, it comes back to the issue of intellectual capital. If you have correct information there, and you are able to compensate the patient for the use of their intellectual capital, that is one potential economic model that may drive this forward, where you will be able to get consent from the individuals to use that information.
Compensation doesn't necessarily have to mean money. It may be reduction in your HMO premium, or some other form of compensation. But there is the opportunity there to work from an economic perspective to get the consent that you are looking for, and to get that honest information. But it requires up front full and open disclosure on what your intent is, and to allow the patient to have the option to say no.
DR. DETMER: What I thought we wanted to do -- and we're about at lunch time right now -- was to also have a little bit of a piece about this, because this is sort of almost growing like crazy. Much of legitimate establishment care hardly in a large part even has a touch of what's going on. It's really amazing how it has taken off.
Okay, why don't we break for lunch. We've got ourselves resuming at 1:00 p.m. Why don't we say 1:15 p.m.? How's that?
[Whereupon, the meeting was recessed for lunch at 12:30 p.m., to reconvene at 1:15 p.m.]
DR. DETMER: We want to start off first with talking about some of these core elements for the records. I think probably what would be good, we could start maybe first not identifying which set they go in, but just the kinds of considerations we would want to have in there period. Then we can end up putting initials behind them later, if that's the case.
So, Jeff, I'm going to start with the four that you mentioned. The issue of content, communications, representation, and data security. That's at a fairly abstract level, but that's certainly there. There is a lot inside of each of those too. Maybe for a reference at least, one piece of this, you might want to get our paper out.
Dan, there were a number of things in yours that should be kind of a mixed bag at this point.
MS. HAYDOCK: This is going to get to a lower level of detail, but I do have a very simplified version of the Australian model.
DR. DETMER: That would be great. Let's put those up there.
MS. HAYDOCK: It's a different way of looking at information.
DR. DETMER: They have business factors.
MS. HAYDOCK: Which is another look at content, isn't it?
DR. DETMER: Or it's just a way of looking at the players more than anything else. They call them parties instead of -- parties are persons or organizations or whatever. Events, enabling factors, resources and others, environmental factors. It does call them social. Then a set of things they call party characteristics, personal identified, the person's view, state of health and well being.
Maybe what would be good at our February meeting, or one of them would be to have somebody kind of present the Australian model.
DR. FRIEDMAN: Bob Mayes mentioned to me that there was somebody from the -- I forget get the acronyms -- the Australian Institute for Health and blah, blah, blah.
MS. HAYDOCK: She is the lady I mentioned to you guys, Mary Jo.
DR. DEERING: That might be coming to visit?
DR. FRIEDMAN: If you appeal very nicely to them, they will send copies of a nice, big, colored flow chart of the model.
DR. DETMER: What happens if you don't do it nicely?
DR. FRIEDMAN: Then they will charge you $20. The state of Massachusetts will not cut a check to Australia.
MS. HAYDOCK: Would you like me to do that?
DR. DETMER: Yes, I think so. I guess we'll need to look at our agenda for the next meeting, but I think that would be worthwhile. I know Bob Mayes can hardly sleep, he gets so excited about it.
MS. GREENBERG: Is this person in the Washington area?
MS. HAYDOCK: She is stationed right now in the San Francisco area or somewhere in California. We're actually hoping to get her out east, to work with her as well. We had thought perhaps of getting her here in February.
DR. DEERING: I think that what I lacked was the final content. So you have that.
MS. GREENBERG: I think if she would be here in February, it would be nice to have her for the full committee, I think.
DR. DETMER: It probably would. They would probably like to hear her. We'll have to see. We can talk about that tomorrow.
MS. GREENBERG: True, but it relates to the 21st century activity also.
DR. DETMER: What is your pleasure?
DR. DEERING: Would people like to take a look at this?
DR. DETMER: Why don't we let you sit down a moment and read this, and then we'll pick this back up and see if we can deal with it.
DR. DEERING: I can call your attention to what I have heard as the major changes. Moving the first sentence down from the original paragraph, to become the first sentence of paragraph two. The last sentence of paragraph one, last line includes the words, "should seek to."
Under the second paragraph, the second sentence, the work group will monitor relevant activities. Then at the end we added global activities under the pertinent activities.
Item one, we inserted, "at least annually." Item two we modified to reflect the three. That should one item. We inserted a new item five, and inserted the word "appropriate" on item six.
DR. DETMER: Well, I think that certainly is what we had talked about. Do we like it? Okay, Dan you have a motion. Do you want to pick it back up off the table?
DR. FRIEDMAN: Surely.
DR. DETMER: And a second.
DR. HARDING: Second.
DR. DETMER: Any discussion? All in favor say aye. Opposed? Abstentions?
[Whereupon, the charge statement was unanimously approved as drafted.]
We'll take this into the full committee.
We started putting some things up on the board there: content, communication, security, representation. Some of the things that Jeff mentioned this morning. We added the kinds of language that the Australian model -- Sandy put up. I can tell you, I can read that much better than had I done it.
I just was asking Dan if he wanted to -- what's the best way for us to do this? How are you thinking about this part of our project?
DR. DEERING: I'm trying to think of where we wanted to get. Maybe we should just spend a moment thinking through where we said we wanted to get. We said we wanted to be able to refine and agree on what we saw as the core elements under each of the three separate records. Having done that, we