[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC
Call to Order - Dr. Lumpkin
Connecting for Health - Dr. Lumpkin
Benchmarking - Mr. Hungate
Where Do We Go Next? - Dr. Lumpkin
Agenda Item: Call to Order - Dr. Lumpkin
DR. LUMPKIN: Welcome. No, Internet? In that case, we're not going to introduce ourselves. Well, we probably should. I'm John Lumpkin, chair of the workgroup.
[Introductions were made.]
DR. LUMPKIN: Welcome.
I'm going to sort of play around with this agenda a little bit, so we can get out in some sort of reasonable hour. First of all, Mary Jo Deering, who is our lead staff for the committee is like somewhere overseas. She is in Germany at some meeting or other -- Information Quality on Health Web Sites, some international meeting, which she obviously thought was more important than our meeting. But she does send her regrets. She did help us put together the agenda, so our best wishes for her, and hopefully that she will have a good time in Germany, and actually have some free time outside of her meeting.
Agenda Item: Connecting for Health Update - Dr. Lumpkin
DR. LUMPKIN: The first item on the agenda is the update on the Connecting for Health. About June 5, the Marco(?) Foundation Initiative on Connecting for Health held there meeting here in Washington, DC. It was attended by probably in the neighborhood of probably 200-300 people.
It started off by a presentation by the secretary. And I actually heard something that I thought never in my life I would ever hear. Judging from the fact that we completed our report in December 2001, and it took us months and months and months and months of asking to get on somebody's agenda other than Bill's, because we appreciate that ASPE already was on board, the secretary, in his opening remarks, used the words, the National Health Information Infrastructure. So, we have arrived.
The Connecting for Health dealt with a number of approaches to pushing forward the interoperability and connectivity. It had a very, very broad audience. Some of the presentations I thought were actually incredibly fascinating. There is a gentleman, Bob -- and I don't remember his last name -- he is a software person, an information technology person who has had a daughter who developed a very rare form of leukemia.
He described his experience of helping his daughter through the medical maze. And he started accumulating his own notebook full of copies of her medical records. And at one point, it began to get to the point where it was three notebooks full of records. And he describes how first initially he felt some resistance from the doctors, because they didn't want to share the records. And he told them how it was the law that they had to share them in Michigan.
And ultimately, it got to the point where he would show up at appointments and the doctor would ask to look at his notebook, because he had everything from each of the 11 doctors this young lady was seeing all in one place. So, they felt more confidence in his notebooks than they did in their own medical charts.
And the doctors began to say, I wish all of my patients did this. And he commented how he thought that this was really a major problem. And he became committed, and is now working in medical informatics in order to begin to push forward the agenda of trying to have this information available on a real time basis.
There was also discussion of the personal health record, which was led by David Lansky(?), who is heading up the Foundation for Accountability. And he started off with a little dog and pony show, which included a simulated conversation between a physician and a patient, using a personal health record as she was monitoring her diabetes. And she had episodes where her diabetes was very low, and they had a discussion about it, and determined that she was using a medication that interfered, and so he adjusted her insulin.
It started going up, and they found out that she had been treated for back pain, and had a steroid shot. And it was kind of an interactive thing where by testing her own insulin at home, and putting it in her own medical record, that it became available to her physician, that it would be possible for them to partner in managing her diabetes.
The report was very well received. There was some press coverage and interest. And I think all in all, it moved forward the agenda of addressing what we have initiated with our initial report, and then the subsequent report in 2001, "Information for Health."
Anybody else who was there who might want to add something about the Connecting for Health roll out?
MR. BLAIR: What was the basic message set forth by Connecting for Health?
DR. LUMPKIN: Thank you for reminding me, because I did forget the whole thing about data standards. This Connecting for Health was composed of three executive vice chairs. One is Russ Rushi(?), who is global vice president for IBM. The other is Herb Pardis(?), who is head of Columbia Presbyterian System out of New York City, and I forget about the third one.
But the Workgroup on Standards came out with recommendations that were very similar to what our patient medical record information documents proposed with those standards, as well as SNOMED and LOINC; LOINC which was not part of our initial recommendation, and really pushing for interoperability as a major strategy for moving forward the agenda for a national health information infrastructure.
So, those reports were in that area. Also, the third area if I mentioned, was the patient medical record. And the second area was privacy and confidentiality. And the built off and gave recognition to the work of this committee, both the workgroup and the committee.
Any other questions or comments?
Okay, Bob, do you want to talk about benchmarking?
Agenda Item: Benchmarking - Mr. Hungate
MR. HUNGATE: Sure. This is an open discussion where I made the mistake at an earlier committee meeting to ask questions in an area that resulted in an assignment.
So, I'm attempting to make sense for myself and for the committee of how we track the progress of the implementation of NHII. And as it turns out, Bill Yasnoff has worked a lot on this in his work, and he and I have sat and talked about it. Jeff Blair has contributed back and forth, both through e-mail and through discussion.
And what I would like to do is try to think about a structure of this. I don't have any written document to share, but I would just like to talk about ideas, with the concept of saying let's try to get something that we can put down on paper, and then begin to flesh out. I think it will mesh with a lot of your other thinking. I hope that's true. Let's see where we are.
The "Information for Health" publication has within it some stages for the strategy for building a National Health Information Infrastructure. And these I would characterize as process measures, where the first stage was leadership, the second was the management of collaboration, and the third was effective implementation.
These had timeframes where leadership was expected to be about a two year program. Managed collaboration had a five year, so if you will, that's a milestone, and effectively implemented was about a ten year timeframe. So, that would work out to saying that leadership was expected to be achieved by 2004. That collaboration would be working as a dominant activity in the process through 2007. And that 2012 would be the effective time of implementation of the whole NHII.
I'm always attracted to the framework of looking at structure, process, and outcome, and so have tried to think about if that is a process measure, what are the structural things that we should look for that tell us that we are making progress in the way that we think we should be.
And in that context, I had some exchange with Mary Jo which was shared with others where it seemed to me that the first level of the structure is basically the code sets, the interoperability issues of standards, security, privacy, and confidentiality, all the structural pieces that really have to be in place in order for the other things to work.
Where the measure would be 0-1, where are we on each of those pieces? Now, I don't have an exhaustive list. I think you folks probably, through collective agendas, have better lists of that than I do.
The second stage of structure, but beginning to get into process I listed as the electronic medical record, the personal medical record, decision support systems. I added in there virtual registries as a piece.
The third level that I thought would be part of this was more information at the beneficiary end. And this is getting to the outcome side of it. I have recently undergone a medical procedure. When I did that, I asked a lot of questions. I got no answers to my questions. And it wasn't that someone was withholding information. It's simply that they didn't have really that information.
I have to make a choice between general anesthesia and local anesthesia. Well, there are some element. I got some advice, well, you ought to go with local if you can. It's not as big a problem. Well, I accept that, but I don't know very much about that. And the problem is that I've got memories of someone from my church who went to the same hospital for the same operation, and came back incredibly compromised. I have no knowledge of the cause. I just have a vignette, and I have an absence of data.
So, my sense is that where we have to get to, and this is the quality outcome that I speak of, is where you can tell someone in advance, information that is valid for their specific condition, their specific longitudinal history, which meshes the procedure with the patient. Now, that to me, means an order of information that is procedural, pharmaceutical, person, place, outcome-based. But we are a long way from that.
Now, to me, the task of measurement is to try to say, well, how do we tell where we are in moving against each of those. What are the measures we can use?
Bill, maybe you have some thoughts in that context.
DR. YASNOFF: I think this whole issue of measurement is very important for a number of reasons. First and foremost is we have to have some sense of whether we are getting anywhere as this process moves along for several reasons. The committee workgroup obviously wants to know if any progress is being made. But I think more important within HHS, and among the partners who are working on this, there needs to be some quantitative sense of progress, because it is clearly not going to occur overnight.
And another reason I think we need measures is I think we need to begin to be more definitive about what it is that is going to tell us when we are done. The vision, as I talk to people about this in various stakeholder groups, and obviously in the meeting next week there will be a lot of discussion about this, at the high level, at a general level, the vision is agreed upon. People support it, but it's not very detailed. And I think we need to bring it to a lower level of detail. And that is another function that these measures can provide.
Another more practical issue is that there is this little agency in the government called OMB that controls all the money. And they very much like to see initiatives with measures, so that they can evaluate whether any monies that are expended on behalf of the government, are actually having any impact. And so, rather than waiting to be asked to develop such measures, it seems better to be proactive and develop them in advance.
I think that what I would like to suggest to the workgroup, this is an issue that requires some thought. And unfortunately, because of the arrangements for the meeting, not much time has been devoted to this up until today. But immediately after the meeting, this becomes a very high priority.
Also, I'm beginning to be able to acquire some staff resources to work on this. So, what I would like to suggest after this discussion, and I don't mean to cut off the discussion in any way, is that I would be willing to accept the assignment to try to put together a framework for the workgroup to proceed.
And I think my suspicion is that without thinking about it in depth, I suspect there are at least three steps involved. One is bringing a framework proposal to the workgroup, and having the workgroup agree, discuss it, provide feedback, and agree on the framework for how we should proceed.
I think another step needs to be perhaps getting testimony from the stakeholders as to what they think about these measures. Because essentially, these measures are going to define what the end state is. And I suspect there is going to be quite a bit of discussion in terms of what should be included, what would be excluded, and what the final measures should be, what the values should be as well.
And then I think the workgroup would be in a position to recommend through the full committee to the secretary a set of measures that the community all agrees on that should be adopted to track this activity.
So, something along those lines. And I would be willing to take that one as an assignment, and give an update at the next workgroup meeting, assuming the next workgroup meeting is some reasonable number of weeks away.
MR. HUNGATE: Does the kind of structure, process, and outcome idea of where there are different kinds of measures make any sense to you, Bill?
DR. YASNOFF: I think so, but I don't want to be overly -- I'm not ready to reach closure on that yet, because there are some other characteristics the measures have to have, primarily the characteristic that we can measure them in some reasonable way, at some reasonable cost.
And so, we may be able to define some measures that we would love to have, that are wonderful, that are very informative, but are impractical, or unbelievably costly to measure, and we'll have to throw them out. So, in some cases, we may have to, if we adopt that framework, we may have to develop surrogates that reflect the concepts we are actually trying to get to.
Also, I'm not sure whether that model is comprehensive enough. And I think I would like to devote some more thinking to that. I don't know whether it is or not. I'm not saying it isn't. I'm not prepared to say at this point.
DR. STEINDEL: I think as many of us are aware, HIMSS has an NHII workgroup that has kicked off I guess about five months ago or so, Jeff? And one of the things that they have placed on their agenda, because they realize the importance of measuring progress towards an NHII, is to do, as they describe it, an initial survey of the status of the country towards an NHII.
And this survey is just in the formative stages. It's basically just a concept idea that is just the way I have described it. And I think it would be nice if we could take advantage of the HIMSS ability to do a survey, or some type of similar device to gather the information, because this committee usually does not have that ability.
And one of my other hats, I'm a member of that survey committee. And if this group wishes to work with them, I will take that information back.
DR. ZUBELDIA: One question I have is what would be the authority or the persuasion or the mechanism to gather the data today, and to put in place some sort of continuous measurement system that would for instance, just count the number of medical records that are being sent on paper versus electronically? Where you start today at a ratio of 1,000 to 1, and see it progress.
Because I don't think you would be able to say one day we have arrived. I think this is going to be evolving very continuously, and whatever rate, I don't think you will have an endpoint that will say we have arrived, unless you provide a measurement, and you say when we get to 90 percent, we'll declare victory. I think 100 percent would be impossible. And I don't think it's going to be black and white. It will be just a transition.
So, do you have some persuasion ability or authority to set up some sort of measurement like that within the government entities?
DR. YASNOFF: I think that's a really good question. As I think everyone in the workgroup knows, there is a request in the president's fiscal year 2004 budget for $3 million for this activity. With $3 million, clearly that is not going to allow you to make a huge impact on actually building the NHII.
But I think that putting in place a program that periodically evaluates the measures of progress is something again, that would be easy to do, and easy to justify as part of the expenditures tied to that budget item, and also is consistent with the OMB guidelines and GPRA and all the other things that govern how we pursue activities here in the government. So, I guess the short answer is yes.
MR. BLAIR: I would think that one of the first -- I'm not sure this is a benchmark, but maybe it is. When I think of the National Health Information Infrastructure, like I think of other national infrastructures, there are many different elements to it. There is an information technology portion of it. There is a standards portion of it. There is a public health portion of it. There is a provider portion of it; all of those pieces.
And my thought was that being able to lay these out as a first step in the benchmark in terms of demonstrating that your office is pulling this together into a cohesive measurable direction would be to be able to identify each of the stakeholders consistent with the NHII report, and all of the other different functions as you have defined them for next week, the architecture piece, the standards piece, the community health care pieces, all of those pieces.
And then lay on that matrix, the specific organizations with the health care informatics piece. You have HIMSS, you have Connecting for Health, you have several other organizations. So, you have within that sector, you have those organizations. And exactly what role each one will play in terms of architecture -- will they play a leadership role in architecture, or a supportive role in architecture?
And by laying those things out, you begin to have control over the direction of the NHII. And it's like a management tool. So, my thought was that that would be like a foundation for the benchmark, because the first benchmark is are all of the entities pulling together in the same direction with complementary objectives, so that they would all begin to fit together.
And you could wind up saying, well, here are the missing pieces, and here are the missing functions that need to be done. We need to find an organization that will step up and do education in one area, or provide leadership in another area, whatever.
So, does that fit, or is this out of synch with what you are trying to do?
DR. STEINDEL: Jeff, I was listening to your comments, and there was one word that you used that disturbed me, and that was the word "control." Because the one thing that we did hear repeatedly in our hearing was that people wanted the federal government to take a leadership role, but they didn't want it to take a controlling role.
I think we need to be careful about that word. I wanted to see if that was just a slip, or did you really say that we should be slipping into a control role -- the government should be slipping into a control role?
MR. BLAIR: That was a slip, certainly, because the role of the federal government as we had defined it, was leadership and coordination. So, if I used the word -- I was thinking of it more of the matrix I was thinking of as a management tool. So, I was thinking it provided some degree of control as a tool, and not that the government's role would changed in to control.
So, thank you for catching me there, and giving me the chance.
DR. STEINDEL: Thank you for clarifying.
DR. ZUBELDIA: I have a question. In benchmarking the progress, if the goal is interoperability as opposed to just deployment, how are you going to measure that? By the number of interface engines that have to be used? Because one thing that we see is today, for instance on the administrative transaction side, Medicare has a very high penetration, 98 percent of the hospitals send electronic claims to Medicare, but they are not interoperable. And 80-something percent of the physician send electronic claims to Medicare, but they are not interoperable.
So, if you are trying to make a distinction between deployment and interoperability, what is the plan to measure that?
DR. STEINDEL: I think in the NHII document, the thrust of that was interoperability, and not deployment. That people needed to be able to exchange and understand information from the various segments of the health care community. And as Bill pointed out, what the document lacked was specifics on the how and what type of timeframe we should look at and measure that interoperability.
And I look at some of what's going to come out of the conference next week as some specific recommendations for actual ways of achieving that interoperability. But I don't think it's deployment of interface engines. It's can I send you this message, and can you understand it.
And this not just the health care industry. This is also people, individuals as individuals being able to get and understand their health care information, as in Bob's example. We should be able in NHII to query whether local anesthetic is better or not, and get it in an understandable fashion.
DR. YASNOFF: I think again, these are the kinds of issues that have to be thought through in terms of measurement. And that is why the whole issue of measurement is not a simple task. And I think it would be more productive for the workgroup to have a specific proposal for how we are going to measure, rather than to try to de novo, develop that. And Bob, obviously, you may have more to add to that.
It's also tricky in terms of whether you look at the outcomes, whether the outcomes are being accomplished, or whether you look at how the outcomes are being accomplished. So, for example, is the NHII -- are we going to say that we have achieved the NHII when we have effective sharing of information, even if the effective sharing of that information is via electronic transmission of pieces of paper?
Or are we going to insist that the information be structured in such a way that it can move with meaning attached to it from one place to another? And I'm not meaning to argue either way, but certainly you could make the argument that if you are effectively sharing the information, maybe it shouldn't matter how you send it.
So, I think there are some complex issues here. And we may, and I suspect we will want to have perhaps a system of staged measures, where we say in the next three years we expect to accomplish these 10 things. Then once we have gotten there, then we have 15 more things that we could move to from there. So, it's not at all clear to me, and I think your question is just beginning to delve into those issues.
MR. HUNGATE: The only thing I would add to that is that it seems to me that we are in a way, talking about that this is not a directive process. This is an enabling process. This is not a measurement set that we would necessarily expect to be our measurement set, but a measurement set that people who are interested in the benefits of the NHII would be able to self-track and self-assess.
That it is trying to enable the emergence of an effective system by using measurements that move in the direction that you want to go to, so that you can see whether you are making progress. At least, that was the concept that I was trying to work on.
Now, in a way, I'm reminded of my experience in Hewlett-Packard, where when I started out, we had a strategic plan where it was ready, aim, fire. And sometimes we spent too much time in the ready, ready mode. And so we finally evolved to the fire, fire, fire mode, where it was more important to know what the target was than for sure how you are going to get there.
And so, I think that the measurement system has to match the target, and work in that way. In that sense, we had a product development process, where you had an idea, a prototype, a pilot. And so, it seems to me that we've got pieces that we can identify, that we can say this is in this stage of development now. That that's a necessity that has to move to a later stage before it becomes really working.
PARTICIPANT: In the examples that we have been discussing, it really echoes with similar discussions I've had in very different areas. And it sounds like what we are discussing almost are intermediate outcomes. Because if I go back to what the original intent of the report was, the emphasis was really on decision-making, and getting information to people to be able to do different kinds of decision-making in different circumstances.
So, in my mind, if we are talking about measurement, that is probably one of the things, if not the primary thing, we ought to be interested in, is are the decisions that are being made now that are inaccurate, inefficient, unproductive, costly, et cetera, is that what is changing as a result of all of these efforts and investments, rather than how many things are moving, and are systems interoperable and all that?
Those seem to me much more intermediary types of contributions than really the outcome. I discuss this in the area of health literacy all the time, is our outcome a health literate person, or is it somebody who understands what is going on with their health and health care, and can make the decisions that they need to make in order to live a healthy life, et cetera. So, I would like to at least as part of the discussion about outcomes and measurement, at least have that on the table.
MR. BLAIR: I'm having difficulty gaining traction on the discussion about benchmarks, because when I think of benchmarks and measurement, I usually have at least an architecture, if not goals and implementation plans in place. And then I can wind up saying, okay, what are our measures of success? What are our milestones? But without those in place yet, I don't know how to even know what the metrics are for benchmarks and progress.
And my thought is, and this is the reason that I kind of got to the matrix, is my thinking is that until we know who is going to develop those plans within each of those sectors, and who is going to be responsible for what, I don't think we could do it from the top-down.
I think each of those sectors has to wind up saying which standards are appropriate in their area, what portions of the architecture is relevant and not in their area. What portions of even basic education or coordination or building things up. They are all going to be at different stages. Some of them will fit together, some won't. Some are going to require coordination or a linkage at our level.
So, my thought is that that work needs to be done before we could begin to figure out what our benchmarks are, or what our goals are, or what our milestones are.
DR. LUMPKIN: Well, I wonder if perhaps we are getting stuck with our terminology? We monitor the health of the nation through Healthy People 2010 goals and objectives. And we may not know how we are going to eliminate racial and ethnic disparities, we have that as a goal. And we can monitor it. Increasingly, our precision in being able to monitor it with tools is improved.
We have set with our documents, certain goals, very broad, without any specifics of what we want to see in the NHII. And the question is can we take it to the next level? Would we for instance, on the issue of interoperability -- there is an even more fundamental question.
First of all, what do we mean by electronic health record? Then after that, how many of them are there? And then how many of those interoperate with each other? So, by setting a process and starting a process, we may not have to do all the work ourselves as a committee, but we can begin to frame the area in which the discussion may occur, and to encourage the formation of these measures, this report card of progress towards the NHII.
Some of that may come out of the WEDi group. Others may contribute to that. Our role, primarily like we do with other work, would be to bless that, and say this is going to be the national report card that we are going to use to monitor progress towards the NHII.
DR. COHN: I think you are making a lot of sense. I guess I was harkening back to what Bill Yasnoff was sort of commenting on. This is a sort of amorphous area, and I guess I'm hoping that there will be a little more light after the NHII summit next week.
And I guess what I heard was that you were willing to make a first run at trying to put together something that we could begin to react to. I sort of like the concreteness of that, as opposed to us having to spin the discussion endlessly, which is possible to do with the NHII.
I was looking very much forward to seeing what you had come up after we spend three or four days, all of us and 100 others thinking about it.
DR. YASNOFF: If you look at the agenda for the meeting next week, there really is not a place at that meeting for this exact issue, the issue of benchmarks and measurement. And that was deliberate, because I felt that the way to get to those benchmarks and measurements -- I think the meeting will shed a lot of light on that in terms of the recommendations and the discussion.
But I think the way to get to that is that you need to have a framework and a concrete proposal, and then vet that widely. My sense was that it was not going to be possible, with my extensive staff resources of zero, to have such a proposal ready for that meeting, which certainly was the case. And so, there was no point in having that as a discussion.
I agree with you, I think this is the kind of thing where it's not that any small group should be allowed to decide what the measures are. But I think this is the kind of work product that is best developed in a small group, and then refined through discussion, testimony, circulation, and so on. And then the final product, I suspect will not necessarily bear a lot of resemblance to the initial product, but we have to have an initial product I think, in order to really have a productive and focused discussion around this.
This is not the kind of thing that I think a large group can really do. Now, I may be wrong, and obviously, the workgroup is free to try to do this, and I would be delighted, but that's my sense.
DR. LUMPKIN: Well, if it's agreeable, I think we would like to take you up on your offer, and then place that on the agenda for discussion at our next meeting, August 7. What I would like to do is suggest -- I know we have on our agenda, potential recommendations. I just don't feel like I'm ready to go there, particularly given that there is this big thing happening next week.
And so, my suggestion is we skip that point for right now. We have this one hanging out there we don't know quite to do with, which is really based upon our hearings on the National Information Infrastructure, which is much broader than what we are talking about, there is some concern about the participation of the department in that process.
And I don't think we want to lose that as a placeholder, that is something that we will just --
DR. YASNOFF: Can I say just one thing about that? I would happy to volunteer to bring a suggested recommendation in that regard to the next meeting. I think it's clear from the testimony, and from the sense of the workgroup that the department does need to be represented in those various groups that are working on the overall National Information Infrastructure.
And I think at this point we can undertake some discussions inside the department as to how that might be done, and make some suggestions to the committee at the next meeting.
Agenda Item: Where Do We Go Next? - Dr. Lumpkin
DR. LUMPKIN: And then ultimately, what we would like to do is just on the issue of the NII, is to send a letter to the secretary, rather than trying to develop a full report, but just making some recommendations.
So, having done that, let's move the last item on our agenda, which even though it slated as sort of a relatively short conversation, we can have it short or long, but really gets to the heart of the issue, where do we go next? And we haven't really made a hard and fast decision.
We have listened to a lot of areas. We've had some hearings related to the personal health dimension. I think that the health care provider dimension, through the work of Simon's committee and so forth, is progressing fairly well.
We have had some hearings on the population health dimension in relationship to the progress, and we have been monitoring NEDSS and other developments in the population health dimension.
My thought, and I'm just throwing this out as discussion, is that where I believe we can make a contribution is to perhaps focus our work in areas related to the population health dimension. And I think that while we have had some discussions on the personal -- I'm sorry, the personal health dimension.
While we have had some hearings on the personal health record, as this discussion -- as I have heard other discussions at the Marco Foundation and others, I think we need to broaden our discussion away from a record, into something much broader, a tool or some other kind of broader concept than just a record, which could be a piece of paper.
And looking at the enhancements in which this environment that we are talking about as being the National Health Information Infrastructure adds to value to individuals' decision-making, as well as enables them to become an equal partner in making health care decisions to the extent in which they choose to participate.
So, having said that, I'm just going to sort of toss it out for some discussion. And then based upon that, we can then determine what it is that we want to do on August 7.
Part of our problem has been is that we have not had any significant time to have discussions as a workgroup. And we may just decide that we want to spend almost all or most of that time really kind of going over what the status is of the various dimensions, and then how we are going to map out our activities over the next year or two.
So, it's on the table. Steve?
DR. STEINDEL: My sense of what I heard the last year, both in the hearings that we have had with the workgroup, and in other groups is that I concur with your observations. And that a good effort of this workgroup in the near-term would be to focus on coalescing a good report on what needs to be done with the personal health dimension.
There is not really an organized body that is focusing on it. What it appears to be is there are a lot of organized bodies trying to focus on it. And I think if they had some type of structure and framework that could be channeled into producing a productive contribution to the personal health dimension of the NHII. So, that would be what I feel the focus of the August 7 should be.
DR. LUMPKIN: An internal discussion?
DR. STEINDEL: Internal discussion.
DR. LUMPKIN: Kind of fleshing out?
DR. STEINDEL: Of what we have heard on the personal health dimension over the last several hearings.
MS. WILLIAMSON: I think that would be a great idea, primarily because I know there are several issues that we are hearing. One in particular which Steve has brought up is the issue of privacy and confidentiality as it relates to the personal health dimension. So, looking at that component, and identifying others would be great for the workgroup to do as a whole.
DR. STEINDEL: I think we have issues involving the privacy and confidentiality issues about obtaining information for the person health record, about using the information in the person health record, the validity of the information in that record, the standards for transmitting information to and from that record, whether they should be the same as in the provider dimension, or should there be a new set of standards?
What constitutes the minimum data set that should be in a personal health dimension? If somebody is going to use something that's in a personal health record, what can they expect to find in there as a minimum set? Those were questions that were all raised in the hearings, that I think we need some committee discussion on, on how to focus on it, and whether it has reached a stage where we can put it together in a report, or whether we need to flesh it out with specific hearings on topics.
MR. HUNGATE: In the early Quality Workgroup discussions that we have had with the new group, the personal health record has been a big part of that discussion in the sense that it's a critical piece of all of it. So, I don't know how we get the Quality Workgroup meshed with the NHII Workgroup in that sense. I'm looking for guidance in that way. I can always support your initiatives.
DR. ZUBELDIA: One thought that comes to mind, maybe some outreach to Quicken, Microsoft to see if they can put together a Quicken type of personal health record software package that could at least if nothing else, bring it to the masses, even if it's something that will evolve over the years. If we can get the power that those companies have in reaching the market, perhaps as a way to help develop this into something that is easy to comprehend by the masses.
DR. LUMPKIN: I think rather than trying to go to that solution, because again, I suspect our work may help a number of others who are looking around. Obviously, there are those who are going to build business plans around a personal health dimension. I know that there is a fair bit of interest within the world of philanthropy looking at that interest of what can be done to move forth the agenda.
So, I think that there is a lot of work that we can pull together without necessarily having to deal with the nuts and bolts of actually getting it implemented. And our work in our committee can give some guidance to that process.
And I was just wondering if we might want to -- and this is slightly a different format, because we are really talking about a full day of meeting, but that we might invite some experts to participate. One name that would come to mind would be David Lansky, who chairs the workgroup with Connecting for Health.
But we may want to think of two or three other names of individuals that we would want to invite to give a short presentation, because they can't participate as members and experts. But if they were to give like a five minute opening conversation, and be strongly invited to stay for the whole meeting, and could participate, we could probably do that my guess is, within the requirements and structure of FACA; kind of like a panel.
DR. STEINDEL: I agree with that. I think given the expertise that we have around the table on the personal health record, I think it would be a good idea to bring in some people. And as long as we can do it under FACA, and as long as we really do have a good solid discussion session, I would be in favor of it.
DR. LUMPKIN: Now, do we have a DOF here? Who is our DOF, designated federal official?
DR. STEINDEL: I didn't see one.
DR. LUMPKIN: We've got to have somebody here.
DR. STEINDEL: I'm acting lead staff. Mary Jo said take notes.
DR. LUMPKIN: So, you are supposed to tell us whether that is legal.
DR. STEINDEL: I think as long as we invite them initially as you said, as a panel, and ask them to stay. Of course the chair controls who speaks.
DR. LUMPKIN: And other people who attend will also be --
DR. STEINDEL: We have never precluded participation from the audience.
MR. BLAIR: This is a question for Bill. Bill, when you give us a briefing on the results of the meeting, many of us are going to be attending it, but we'll wind up seeing bits and pieces of it. But you will probably get a roll up, an overview of the results of the meeting.
And I don't know exactly what the agenda is for each of the sessions, but will you be able to report back to us not only the progress, but if there is perceived gaps in the development or evolution of an NHII, things that need to be done to coordinate to pull things together, to fill in missing pieces? Will that be part of what we'll be hearing?
DR. YASNOFF: Yes, and I think in terms of the meeting on August 7, I'm assuming that number one, I would provide some kind of a report on progress toward these benchmarks and measures. That would be one item. And we do need to leave some time for discussion for that.
I would also plan to present some kind of draft recommendations relative to the National Information Infrastructure. And it seems logical that the workgroup would want a summary report, and some analysis of the meeting that is going to occur next week.
Given the potential for various discussions and recommendations coming out of that meeting, there may be some value in deferring major decisions about the direction of the workgroup until the results of that meeting are known.
MR. BLAIR: Well, that's part of what I was driving at by asking the question in the sense that you may be able to point out some work that needs to be done, especially things that might be especially well suited for a committee like this one in the sense that we have tended to look out into the future a little bit. We have tended to look at integrating issues between major health care domains that other groups are not as well suited to do. So, you may be able to give us some good guidance on a constructive role we could play on August 7.
DR. YASNOFF: So, is this planned to be a one day, all day meeting?
DR. LUMPKIN: Yes.
DR. YASNOFF: So, I don't know how you want to set up the time, and maybe all of those things can be done in one day. But my hope is the meeting next week is a major first step really in moving towards NHII. And I think that depending on what happens, and of course no one knows really what is going to happen, what the results of the meeting are going to be, I think that it may be the best idea in the world for the workgroup to focus attention on the personal health record.
But it may turn out that there are six or seven other areas that are major obstacles to progress in other aspects of NHII that the workgroup may also want to consider. So, I'm concerned about making the decision. I don't see any particular downside to having a panel to discuss that.
I think the ultimate implementation of the NHII is the personal health record. And the ultimate benefits from the NHII are going to accrue from the development of the person health record. So, I certainly don't disagree with that. My concern is with those three agenda items and a discussion, how much time is there going to be? I don't know, but I certainly would be happy to present a synopsis of the meeting, an analysis on August 7.
DR. LUMPKIN: The three agenda items I have would be a discussion from NHII summit. I'm going to call it that. That's not the title, but I forget what the title is. Discussion on progress measures. And then the panel on the discussion of personal health dimension.
DR. YASNOFF: You missed the NII recommendations, which you requested.
DR. LUMPKIN: Yes, I did. That, I believe will be a relatively short discussion.
DR. YASNOFF: I think so.
DR. LUMPKIN: And I think that's doable.
DR. YASNOFF: I think that's a relatively short discussion, but on the other hand, my understanding is your desire is to have a draft letter to the secretary with those recommendations. And so, that wouldn't necessarily have to be completed on August 7.
DR. LUMPKIN: Okay, that I think, describes a full day. And if we look at in the morning doing those first three items, and then in the afternoon, right after lunch, having a full afternoon to discuss the personal health dimension, I think that describes a good day.
DR. COHN: I guess maybe I've been to too many things that look simple, that weren't, like this afternoon and earlier. I'm actually sort of sitting here listening to all of this, and I don't know what the recommendations that come of out the NHII summit are going to be, but it seems to me that that's sort of a major piece of work. It isn't so much a presentation, as a discussion of what is next.
And it's hard for me to imagine -- I can see it as a half an hour presentation or even an hour's presentation. But that could easily take a significant amount of time. And I guess I would be afraid given that may actually be very important to the ongoing work of this group, to try to shortcut it. So, I'm just wondering if you can really do all three of those before lunch. What gets cut is really the focused discussion around the personal health record.
DR. YASNOFF: Maybe from a logistics point of view, it would be better to do it the other way. To have the discussion of the personal health record first. Because the morning sessions tend to be shorter. You have fewer hours in the morning. That's the reason I'm suggesting that.
DR. STEINDEL: The way the agenda is laid out right now, I'm happy with it, because I would rather have a dedicated block of time for the personal health dimension discussions. And I see that forming better after lunch.
My comments on the synopsis of the NHII meeting is that I agree with Simon. It's a very important task for this workgroup, and a very important thing for us to discuss. What I'm concerned about is how much we are going to be able to absorb and discuss one month after the meeting.
And so, a preliminary report, and whatever preliminary documentation might be available that Bill can share would be very important for this committee. And I think we should make it a prime agenda item for a later meeting, so we can have a substantive discussion on what to make of that report, and what directions we should go in.
Bill is a very hard and dedicated worker, but I'm looking at the size of that meeting, and putting something together that we could really -- and in terms of our time as well, that we could really sink our teeth into one month after the meeting is asking a lot.
DR. YASNOFF: That certainly makes sense to me. I guess as I'm sitting here thinking about it, I'm thinking that the committee would probably want to have something from me at least a week in advance of the actual meeting. So, now we are talking August 1, which is a very short timeframe. So, that seems reasonable. And as long as the issue gets the needed consideration, that seems fine to me.
I also think that the issues that the meeting raises are likely to be sufficiently complex and difficult that some thought between meetings would be helpful as well. It's not the kind of thing, I suspect, that is going to be resolved in just a couple of minutes of discussion, or even maybe many hours of discussion.
DR. LUMPKIN: And part of what we may want to do with that is to parse out some of these issues to other workgroups and subcommittees.
Anything else on the summit? I think we have an agenda, and pretty much we need to get some recommendations. If you would send them to me, and to Steve and Mary Jo and Cynthia if you can, we'll try to pull together a list, and we'll invite three or four people to be on the panel, and help us get started on the person health dimension.
Any other things we need to cover today?
DR. STEINDEL: I think that the list.
DR. YASNOFF: I had a process question. Is there a date for the workgroup to meet after August 7 that has been established yet?
DR. LUMPKIN: No. We will meet at the September meeting. And then part of what I think we'll do at the end of the discussion in the August 7, another agenda item is really to begin to try to plot out what we are going to be doing.
DR. YASNOFF: So, that's something that needs to be on the agenda for the 7th, is think about future dates.
DR. LUMPKIN: Because again, I'm hoping with the high level overview that we'll have of the NHII meeting, we'll have a better idea of what we are going to want to do with that, to wrestle with that. And that will allow us to start scheduling.
Because it's a question of are we scheduling committee time? Do we need to schedule hearing time? And it's hard to project that without knowing what the product is. And the same with the personal health dimension. Hopefully, by the end of the day on the 7th, we'll be able to plot out our activities in relationship to those two issues.
DR. STEINDEL: John, in the early days of the NHII Workgroup hearings, we did schedule two hour blocks on the 8:00 am area on the second day. We might want to consider doing that again, in terms of meeting time.
DR. LUMPKIN: Yes, I think we need to plan that out. But we are not talking about the 8th of July. We're talking about in future meetings.
DR. STEINDEL: Right.
DR. LUMPKIN: Okay, I think we are done with our agenda.
[Whereupon, the meeting was adjourned at 5:35 pm.]