[This Transcript is Unedited]
National Committee on Vital and Health Statistics
Workgroup on National Health Information Infrastructure
Workgroup on Health Statistics for the 21st Century
December 19, 2000
Hubert Humphrey Building
200 Independence Avenue, N.W.
Reported and Transcribed by:
CASET Associates, Ltd.
10201 Lee Highway
Fairfax, Virginia 22030
- John R. Lumpkin, MD, MPH (Chair)
- Marjorie S. Greenberg (Executive Secretary)
- Jeffrey S. Blair, MBA
- Cynthia Bauer
- Daniel Friedman, PhD
- Richard K. Harding, MD
- Clement Joseph McDonald, MD
- Kepa Zubeldia, MD
- Steve Steindiel
- Jim Parrish
- Ed Hunter
- Perchelle Williamson
- Debbie Jackson
- Mary Jo Deering
- Rob Weinzmeir
- Recap major themes from previous hearings - Dr. John Lumpkin and Dr. Daniel Friedman
- Recap current timetables/mileposts for finalizing each report and considerations for linking them by issue and/or content - Subcommittee Workgroups
- Discuss 21st Century Health Statistics Report - Subcommittee Workgroups
- Discuss NHII report - Subcommittee Workgroups
- Next Steps - Subcommittee Workgroups
P R O C E E D I N G S 10:00
DR. LUMPKIN: Richard and Kepa and Jeff we haven't heard from. We are going to proceed to go ahead. Hopefully we are going to try to move expeditiously through our agenda. There are some rumors about some white stuff coming.
I was here last week, and because of weather in Chicago it took me about 8 hours to get home. So, I am hoping that it won't be quite that bad today, but it is only like 1 t 3 inches which in Chicago would be nothing.
MR. BLAIR: But we are not in Chicago.
DR. LUMPKIN: We are not in Chicago. I was listening to the radio this morning, and they were talking about closing down schools and things like that. It is different.
They don't do that in Boston, do they?
MR. BLAIR: Just the airport shuts down.
DR. LUMPKIN: How about where you are? With 1 to 3 inches of snow, would they shut down?
MR. BLAIR: In Albuquerque? I don't know because we haven't had that much snow in the 2-1/2 years that I have been there, but I just flew down from Boston last night, and are you saying that in Chicago they do that? I mean usually Chicago is well prepared for snow.
DR. LUMPKIN: No, here. We will probably cut our one-half lunch.
The first item on the agenda, we are not on the Internet so we don't have to go around. Well, I guess maybe we should do introductions.
MR. BLAIR: It is good for the transcript, I think.
DR. LUMPKIN: I was going to make him work for a living for once.
DR. LUMPKIN: Okay, I am John Lumpkin. Why don't we start to my right?
DR. FRIEDMAN: I am Dan Friedman.
DR. DEERING: Mary Jo Deering from EPHP.
DR. BAUR; Cynthia Bauer, ODPHP.
DR. WEINZMEIR: Bob Weinzmeir, National Center for Health Statistics.
MR. BLAIR: Jeff Blair, Medical Records Institute.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention.
DR. MC DONALD: Clem McDonald, Indiana University, Regenstrief Institute.
MS. GREENBERG: Marjorie Greenberg, NCHS, CDC.
DR. HUNTER: Ed Hunter, CDC, NCHS.
DR. PARRISH: Jim Parrish, CDC.
MS. JACKSON: Betty Jackson, NCHS staff.
DR. HENDERSHAW: Jerry Hendershaw, NCHS.
MS. WILLIAMSON: Perchelle Williamson, NCHS.
MS. KANON: Susan Kanon, staff.
DR. LUMPKIN: Okay, the first item is to talk about major themes from previous hearings. Dan, do you want to start off?
DR. FRIEDMAN: Rob and I had talked and Rob was going to summarize things.
DR. WEINZMEIR: I just have a few comments. I, also, have more detailed notes from each of the hearings which I brought with me, if you would like to have those, but I just wanted to highlight three points that I thought were particularly important for driving the discussion today, and I think they apply to both work groups in many ways.
A lot of the comments we received were comments that kind of crossed the boundaries of one report with the other, and everybody agreed that our vision was excellent. They agreed with the idea of defining health broadly, with looking at changes in delivery of health care, with looking at needs for local populations and subgroups, for looking at the impact of technology both on health care and on providing information on broad collaboration; all the major points in the reports people agreed with, but they said that the vision was vague, and we had to prioritize the vision as not all the points were of equal importance, and until we get around the issues of confidentiality and data standards we are not going to be able to meet any of those other principles, and so they asked us to translate the vision to manageable steps.
They, also made the point we have to sell division. It may make sense to us as something that is obvious, but it isn't so universally.
It requires strong leadership and actually a public relations campaign to show why this is in the public interest. We have to show that the data can be used to inform decision making on a local level.
Some people said that we needed to present a business case for the stakeholders and educate local politicians about how they can use data at the local level.
We need to get buy in from the general public and the private sector. We need to provide incentives for collaboration. These things just aren't automatically valued or understood. We should showcase best practices and demonstration projects.
People said that the biggest barriers aren't technological barrier; they are sociological and psychological, and we are talking about confidentiality for example.
They said that there is so much discussion about the threat and the risks to invading privacy we have to show the benefits and the rewards of exchanging and linking of information, and then the third kind of general area is over and over again we were told that the role of the data providers isn't to make some new data systems, but it is to make better use of existing data systems, and one of the comments that was made in Chicago was that we are much better at collecting information than knowing what to do with it after it is collected, and we have to make sure the data are accessible and analyzed and will be resources to access for analysis at a local level.
In the case of the Federal Government the most important rule is to not build new data systems, but to make sure that the data we have is available in user friendly formats and provides tools and resources to assist in the analysis, and again leadership which was mentioned over and over again, provide leadership in developing and implementing the data standards, and so to me that was a couple of the major points that were reinforced.
People didn't take issue with the general themes or principles in the interim report. They just said that we have got to get real concrete and think about how we take some steps to get from where we are to where we need to go.
I have copies of the summaries of each of those sessions in San Francisco and North Carolina and Chicago. I can hand these out to you.
Dan, there is more detail. I can point to comments that different people made and so on, if you would like.
DR. MC DONALD: No, I think that is an excellent summary, Rob, and I think that for me the most consistent message that I heard was the first one that Rob mentioned which is at least on the health statistics side, I think we heard a lot of support with some caveats here and there, but at the same time a very consistent and strong theme that we needed to become much more specific and we needed basically to develop the equivalent of a strategic plan or planning document in order to make the health statistics vision more credible.
DR. LUMPKIN: Any other additional comments about the themes from hearings on health statistics?
DR. WEINZMEIR: I didn't repeat the things that were in the interim report. I just wanted to focus on a few things.
MR. BLAIR: When people say that we should be more specific my thought is that I think we have to become more specific in terms of whatever plans we have to function as a catalyst or facilitator to move forward the national health information infrastructure.
My perspective is in HII. I think we will have difficulty getting more specific and it may be somewhat risky for us to try to get more specific on IT characteristics, visions, functions or standards at this time.
So, at least that is my interpretation when they say, "More specific," They are saying, "More specific plans as opposed to more specific descriptions of functionality." Is that view shared by others?
DR. FRIEDMAN: I share that view, and I, also, do think that we are in a somewhat different situation with the two reports because I think the NHII we need to -- I completely agree with you. You said that we need to be specific about how we can move the agenda forward, and specific about long and midterm goals of the agenda but with health statistics I think we need to bring it down much more to a nearer term agenda.
MR. BLAIR: Thank you.
DR. LUMPKIN: And I agree with that. I think that there are clearly specific things that with health statistics that need to be addressed, issues related to state and federal relationships, state and federal relationships with locals and data collectors as well as an assessment of the current and future technology and how that can be exploited to provide the kind of data and information that we need to guide our various uses of health statistics. So, I think it ought to be a much more specific report. We will get into that when we talk a little bit more about the relationships.
Any other specifics on the health statistics hearings?
MR. BLAIR: You had some summary?
DR. LUMPKIN: Mary Jo, did you want to go over it?
DR. DEERING: I didn't color within the lines, and instead of preparing broad summary points I made some detailed notes because in many instances I almost got the impression that these are things that we either need to explicitly vote up or vote down and not necessarily immediately but at some point. So, I want to be sure to capture them.
Certainly the broad brush that Rob has just mentioned with regard to being more specific came through. It has been vague. I think that in that vein one of the more consistent yet relatively specific recommendations that seemed to come through was the concept of building a value chain for information for the various stakeholders. I am sure this couldn't possibly pertain to the 21st century vision people. What is the value from their perspective of moving in these directions? What are the benefits? We were encouraged not to define benefits too narrowly in economic terms because we, also, heard that it is a very hard case to make at this point. The field is too new. The people are trying to guess that the short-term impact is indeed added cost and yet we do still need to sketch out this affirmative value argument for people.
Having said that I would like to ask your indulgence and maybe run through these various specific points that are here and any that we want to pick up and amplify on we can, and we certainly would possibly get to them as we discuss the report.
They fell into two broad categories that sometimes got mixed together. Some seemed to be more about here is what you need to add to the report. This is what the report needs.
Others were couched more in here are the next steps for achieving the NHII, and how much of the latter we end up incorporating into the former is unclear at this point, but the first page is about substance and the next two pages are a little bit more about next steps.
So, first of all, it was suggested that we include disability issues and the disability community in our visions especially at the personal health dimension but, also, of the provider dimension and possibly the community dimension, that we should emphasize data for the multiple determinants of health and take a longitudinal perspective across the life span and looking, also, at the burden of illness so that we are not just trying to capture people at any given moment of their time but in order for individuals to see themselves in this vision to help give them a sense of how this has value over time, to include alternative medicine, to include specific dimensions for the administrative and research areas and that clearly is a decision that we need to make. That is a policy decision for us. We should expand the discussion of reimbursement and other health care structural issues, that we should expand the discussion of quote, cultural barriers, unquote that are really professional and institutional barriers. I think we heard from Lee Gardner that it is 80 percent psychology and sociology and other people who were in the trenches I think echoed that case, that we should expand the discussion of the rewards for value to the consumer or patient of sharing personal information in varying ways with appropriate mechanism and this concept of data as both a private resource and a public good.
We were told that we should show how much progress has been made and clearly we had those kinds of discussions in the past, the work that not only the NCVHS has done, HIPAA, other groups moving forward, to discuss the value of NHII in reducing disparities, to include tribes and tribal issues, to possibly look at five broad categories of health information. This came from FACT(?) of ACCT, and their five categories that they find useful in communicating to people are first what they call the basics, meaning insurance and access issues.
The next is staying healthy which is wellness and clinical prevention issues. The next is living with illness which is chronic care management. The next is getting better which is hospitalization and support services, and the last is changing needs for end of life.
Another recommendation was that we emphasize sustainability, flexibility and acceptability and certainly sustainability above all was something that came out over and over.
MR. BLAIR: Just to refresh my memory, were environmental issues included in those five.
DR. DEERING: No, actually it wasn't. This is more clinically oriented, more personal illness. You are quite right. There is no social community public health concept. So, that certainly is a weakness of that particular model.
We, too, were told to break down our vision into manageable pieces and to set appropriate expectations in terms of what can happen when and then to try to prioritize in terms of both desires and actual steps needed as fundamental meaning that even just practically speaking if you were going to move forward what comes first, which chicken and which egg comes first as you are beginning to move forward, and then the last one that came into the discussion of the substance of the report was this discussion of these virtual private networks.
Jeff, you had raised it when you said that you had been by AHA and several of our presenters confirmed that indeed this may be a direction people are going, and it has some negative implications for constructing linkages.
MR. BLAIR: I wouldn't quite characterize it as negative, just that we should be aware of the fact that there is more than one model for networking.
DR. DEERING: Then under the next steps for the NHII and again here you will see how it is difficult to know whether this goes into the report or how you enter this in the report is to again build the business case for stakeholders. I mentioned that in my broad remarks about creating information value change and incentives for each stakeholder group and, also, incentives for collaborations, coordination and integration within our cross sectors.
Secondly, in terms of who pays, the question that John put to several people, several people agreed that the government pays for the standardization process and the infrastructure, but it should, also, be defining the requirements of providers and payers, identifying the critical standards, endorsing them and promoting adherence and that institutions would be paying for gathering data and for some of the linkages.
The government needs to examine new reimbursement models including differentiated reimbursement and possibly pay for quality and/or incentives for use of electronic records that would support or promote the adoption of the NHII.
We should look to identify the early adopters who as a matter of fact are beginning or will begin to populate these various dimensions including consumers, that again the government should invest in the integration of these information itself or in mechanisms to support information integration and the networks to support it.
We have Phil Lee's $14 billion proposal for a health information and communications for America plan of which he promises to submit details before the end of the year, and we would, also caution that we are focusing so much on the Internet which is wired connections; we are ignoring wireless connections, and we need to be sure to include wireless issues and that there are policy and regulatory implications for the allocations of bandwidth.
It was suggested that we use the IHS as a test bed for the NHII and then other speakers, also, added to that using the federal employees health benefits plans, Medicare, Medicaid, VA, DOD anywhere where we have access to health plans and delivery of services to begin to promote continuity of care linkages.
I mean clearly the computer-based patient record is one outstanding example of how the government is already moving in that direction.
It was suggested perhaps that a few big cross-cutting areas be targeted first, possibly at least one of which might be based on a life event. Other areas mentioned were medical errors, emergency room visits, continuity of care from the consumer's perspective. We were urged to take an inventory of existing federal programs to build on and info and other CDC work was mentioned certainly as a good foundation there and that we should be addressing the human resources issues, the professional education, training and re-engineering aspects of sustained implementation of these activities, again, setting realistic expectations and articulating and promoting the public value in utilization of information and to sell public officials on the value and to decide who is the client for this information, especially public interest information or public information and to actually develop a market for that information, consciously trying to create a market for that information and a marketing plan, and it was said that the Federal Government should support coordination of care among institutions around specific populations, for example, the frail elderly, that the Federal Government should provide grants and models for planning, support proof of concept projects, showcase best practices and again emphasizing flexibility and sustainability and not a one-size-fits-all approach, and that we should identify barriers within established laws and guidelines and programs, etc.
One example that was raised was the JCHO, for example requires paper records to be kept and we may have other inadvertent unintended barriers within the programs that are in place and that we should look to promote elimination or revisions of those barriers, and those were the main points that I heard throughout the hearings.
DR. LUMPKIN: Any other additional points we want to add to that?
DR. WEINZMEIR: I just want to re-emphasize that I heard in all three of those hearings people say these things in both reports. I think a lot of it George Rainer was talking to the vision side. He was saying a lot of those same things about collaboration and selling the vision and making the business case and so on. I think a lot of the comments given in our little summaries really crossed both reports.
DR. LUMPKIN: I think an important piece that we heard from everything is that we are moving in the right direction, and you know one of the things that you always wonder about when you sit in a room like in the middle of this building which has no windows and you never know what is going on outside is whether or not we are blowing smoke or we are actually moving the debate forward, and certainly through the hearings we heard that both documents had been moving in the right direction and to the extent that we have validation of that then the next step which is to complete the follow-ups which is to actually look at the recommendations and next steps becomes that much more acceptable.
Obviously if we have the wrong vision people aren't going to accept or even consider the recommendations. So, I think we are both at the same point.
So, maybe we can move on to the next item on our agenda which is to really kind of discuss the timetables.
DR. HUNTER: May I make one brief observation? One of the things in Rob's summary write-up and in what Mary Jo was saying and what I heard from the hearings and even in reading the reports you sort of get a difference between the two on the issue of whom they are expecting to do what, and you almost get a sense in the HII discussion of oh, here they come; what kind of burdens are they going to place on me as a provider or what are the costs, and if they standardize this am I going to be changing my system, and the vision, while there may well be payoffs to that it is still a sort of a hunkering down looking at what is coming; how is this going to affect me. With the vision one it is almost you don't get that sense of anybody being expected to do something. It is more what are you going to do for me or what are the publications needed or what are the tax dollars or whatever going to do to promote this vision, and it may be something we can do to pull each report towards some middle of that where the HII is not setting people on sort of well, that is fine, the way you think I am going to do that and the vision is sort of more passively, "I have no part to play in making this happen," and I didn't get a sense of the vision one at least that there was a lot of oh, here is what I might be able to do. It was more, oh, this is interesting and here is the federal role and here is a public role or some other role.
DR. STEINDIEL: John, if I can enunciate on that what I heard in all the hearings, and I heard it very, very clearly in North Carolina was this is a wonderful vision but, and I think we need to pick up more on the but,and I think we need to pick up more on the but part, and I think Rob enunciated it fairly clearly.
There are lots of people who see what the vision is but they can't put their arms around it, and we have to state it more clearly, and we have to state the case of why this is good more clearly, and as Rob put here, I mean I was reading this and these are almost the exact same words that I would say, we have to sell this vision better.
We have to show how people will benefit from it, both from the statistics part in the vision statement and from the NHII part why is it important to coordinate the various dimensions; why is it important for the various aspects of health care to communicate with each other, and while there were lots of people who testified and probably will testify again in January who are experts in the area and see the vision, there were lots of people who needed enunciated more clearly as to why do we really need this; how is it going to benefit me as the consumer?
DR. LUMPKIN: Picking up in this same vein there was a lot of talk about we need to provide about we need to provide a path for both of these, a plan, provide leadership and I think we need to state that more clearly in the next iteration of the document, maybe take an approach similar to what the futurists do in their document and maybe put down something like a year from now we would like to see; 5 years from now we would like to see; 10 years from now we would like to see, that type of approach.
MR. BLAIR: I would like to echo affirmation of that point. I think that that attracts a lot of people to support this because if they see the plan and they see how it begins to unfold over many years they see it is a journey; they see it is multifaceted, but they, also, see that there are specific things that could be done each year that all begin to tie together into an ultimate information infrastructure for health care for the nation and then it has more life.
DR. LUMPKIN: I think I have a little bit of a difficult job this morning, and I am going to share this with all of you because hopefully that will help us get through the agenda.
What we are going to try to do today is having now gone through those themes and all of us kind of want to jump in and starting getting to the individual reports, but there are two things that we need to do first. One is to look at the time lines of the two reports as they sort of map out into the future and I think we can go over those, but we will need to revisit it later on in the day, just so we see where the two processes are and then to have a specific discussion of how these two reports should interrelate and then get into the specifics of the individual reports based upon that. So, that is kind of what we are going to try to do out of today's meeting, and we are going to get back to a lot of these kind of issues of the specifics and how we do that as we go on later today.
So, having said that, if we can move just, because this item even though we have a fair bit of time I don't think is going to require it, to kind of look at the timetables for finalizing each report and I am going to ask Dan to go first on his time line, and then I am going to sort of toss out some free thinking based upon the conversation Mary Jo and I had very briefly this morning on the time line for the NHII document.
DR. FRIEDMAN: Fine. John, as I am sure you either suspect or know I have resisted putting a specific time line around developing the final report, and I have resisted it because I see the final report as not being so much a rewrite of the interim report but being a different document that certainly would incorporate parts of the interim report, but that would, also, hopefully take us much, much further, and I think that there are a few obvious steps in getting there, and in some ways for me what is most helpful is, and I think what we need to do on the health statistics side and maybe on the NHII side as well is in some ways start with a fairly specific idea of what we want the final reports to consist of and what we want the final reports to attain and then move backwards.
In terms of a process for developing a final report what we have discussed on the health statistics side has been essentially having a few relatively small meetings reviewing the testimony and thinking through in some detail what we would like a final report to include, essentially starting with the high-level outline and then an interactive series of outlines, simultaneously with that, probably simultaneously with that starting to develop recommendations and categories of recommendations.
Ed Sondik suggested to me that at some point which makes a great deal of sense that we engage an external group in basically testing out the recommendations against the external group and then have an interim report that we can really, not an interim report, a draft final report that we can circulate and get feedback on.
I am resisting a time frame a little bit, and I know we have to have one, but I am resisting it because I think that at this point we have the opportunity on the health statistics side to develop what could be a very helpful and hopefully influential document and I would rather take the time to really think that through and develop as well as we can rather than have it driven completely by an external time frame.
So, if you were to say, "What is my guess?" I guess my guess would be that in 6 to 8 months we could have a draft final report or at least an extremely detailed outline of a draft final report, and then we would want to take, I don't know what is reasonable, you know, another 6 months or so obtaining feedback and probably rewriting.
So, I am not thinking of it as being on a short time frame and when I think of models for what the final report should look like or what I would like it to achieve I am thinking of the kind of documents that emerge from the Canadian process which in fact have been really influential in terms of their population health information systems, so, essentially a working document, the kind of document that Don Detmer was talking about, the 50th anniversary symposium, I mean something that would provide us with clear direction and clear recommendations about how we get there.
DR. LUMPKIN: Let me ask this question about the process because listening to your direction, and I really don't have a problem with that, that I wonder to what extent can we as we are developing this increasingly detailed outline, can we farm out certain sections to key interest groups and say that this is what we are trying to work on; can you guys give us a document back in 2 or 3 months that would help us flesh out this piece, like CST or NASAS(?) or ANANO(?).
We always suffer because as a Committee we have limited resources and we cannot use experts, at least the way that they used to be used on expert panel kinds of things, but there are a number of organizations who have certain commitments to certain pieces who partially in response to what we have been doing, but also on their own interests have been looking at what is the future going to provide in this and to some extent we might be able to tap some of that expertise in preparing the final document and the final recommendations.
DR. FRIEDMAN: I agree with that with the caveat that I think we would need to first have essentially the outlines of recommendations and then give people the opportunity both to flesh out the recommendations as well as to agree or disagree with them and provide us with more recommendations, but I would be nervous about the possibility of our putting ourselves in as it were a defensive mode in terms of the recommendations. In other words, rather than us lay out what we think if we had to start out by responding without our having laid out our recommendations, if we had to start out by responding to others' recommendations.
DR. LUMPKIN: But one of the things that we did on the standards side is we kind of said, "Here is what Congress has said under HIPAA. Here are the transactions. Whose standards should we adopt?"
So, I am not sure that if we don't have a recommendation having defined where we want to have a recommendation it may be far enough in the process to send it out rather than trying to have a strong recommendation. We have tended to solicit from various groups in hearings and so forth, "What do you think we ought to recommend?" and this may be a way to crystallize that.
DR. HUNTER: I am not sure of the semantics of this, but in talking with Dan I was at least thinking of this kind of loosely knit outside group that might be able to include some of the people that were testifying at hearings and the work group and others might come up with what they see as the areas in which we would be making recommendations or sort of the next level down from the interim report where we talked about 10 principles, and then we picked up some principles, and I think we have gotten some commentary and some of them are not specific enough or could be modified or expanded and then going from that where there is at least some consensus about what are the areas we will be dealing with we could have a reasonably solid outline but still not moving into the point of the more detailed implementation plan, and I don't know what you would call it, subrecommendations or strategies for achieving the recommendations, and for that you may then sort of enfranchise some group to take a shot at it.
I think it would be hard to find the group that has heard as much as the working group of the ASOP(?) Committee from the various hearings to sort of balance the different perspectives to go off on their own, absent some coalescing of those things into a broad set of recommendations, but I,also, think there is an opportunity to ask people to provide the equivalent of vignettes from the HII report to help kind of bring this into line in the world in which these different groups operate, and then their members and constituents may see things that are more understandable in their own terms once they see those things.
DR. MC DONALD: I would like, John, if you could kind of elaborate a little more. I liked some of those threads you were going on. I have to clarify. There are these two reports. Are there other reports? These are what we are talking about?
DR. LUMPKIN: Yes.
DR. MC DONALD: Maybe you could be more specific about how you would manage the public use set and what you would actually do.
DR. FRIEDMAN: Get stuff from the people as it were rather than just us preaching.
DR. LUMPKIN: I agree with that. What I am hearing from Dan and from Ed is a more refinement upon the design I was throwing out, and I think that that is a very good approach, You know, again the description that Dan said of developing this outline and then over time getting more and more detailed in that outline, obviously we need to have the framework in which we want it in and the conceptual models and then taking pieces of that outline and saying, "Okay, now we have got this part. Let us see if we can get some, you know, specifically let us look at a group to help us develop a straw person and use that to sort of see what is out there and then modify that to include an ultimate document."
I think that is an approach that is very workable, and again, I tend to agree with Dan, that process may take a little bit longer, but would produce a better document and if it is not 12 months from now, then it is 16 or 18 months from now, and I think that is okay.
DR. MC DONALD: Which of these documents will be the hardest, do you think? Which is the one that might be more difficult? I wasn't at most of these hearings.
DR. LUMPKIN: I think the fairest thing to say about the documents is that they are a broad general vision and you know, in that there isn't enough specific in them to be controversial.
It is when you start getting into the specifics where we are going to have to make choices that will impact one group potentially more than another group, and that is where the controversy will arise, and I think our goal is to get to the point of controversy and then to make a cut on that.
DR. MC DONALD: I mean I think they are pretty well written.
DR. LUMPKIN: Thank you.
MR. BLAIR: My thought is that maybe one way we could navigate this because I would hate to see us getting picked apart by different groups because we start to get specific. Maybe I am off base, but I thought in developing a generic time line plan instead of getting into greater specificity of function features, technologies or pieces, if we have the overall 10-year, 15-year plan with the multifaceted parallel time lines on each one that that is an area of specificity which I think is less likely to cause people to start picking at us and more likely to have people to join us, whereas if we get into more details about exactly what the functions or features are, then I think we are more vulnerable.
DR. FRIEDMAN: Jeff, my sense is that I think that makes more sense for the NHII than the health statistics.
MR. BLAIR: Okay.
DR. FRIEDMAN: And I think NHII something like that makes a lot of sense together with some proposals for how we get to each of those points such as demonstration projects in specific areas, etc., but I think for the health statistics it is incumbent upon us to if not get to the point of controversy be really highly specific about if not organizations' roles, data sets, structures for health statistics and so forth.
DR. LUMPKIN: Perhaps we can move from there to discussing a time frame for the NHII and up until now we have really been talking about sometime in the spring for a document, and I think the driving force for that was the change in administration and trying to have some commitment, perhaps influence and convince them of the importance of the NHII as they are starting to do their planning for the next 4 years, and one of the issues that we have been struggling on is what the next iteration should be because we want to sell it and the first document is really a fairly high-level discussion that really is for broad consumption, and we have had some discussions about maybe developing a technical appendix or technical document, with recommendations that we would look at for the spring roll out and then developing a technical document along the same process that Dan was describing for the 21st century vision or a more technical document that goes into more of the details and again looking at some of the, and when I say, "Details," of course there is an order of magnitude difference between the two documents in what we mean by details, but that would be one of the ways that we would look at both a near-term and a long-term product for the NHII, in a sense the popular piece and the technical piece.
DR. DEERING: If I could just jump in and say that one of the reasons to reaffirm at least something on a short fuse is we were told pretty explicitly by a lot of people, you know you need to move; the market is moving. It is sometimes moving in ways that you may not like, and, also, there have now been several fairly high-level calls for HHS to do something. I mean the IOM, the NAS did it. The documents in health affairs do it. There are people saying that you know you have got to do something, wrapping up what is next. So, I think that we were urged to encourage, to give the department something that could show that it would begin to engage the gears.
DR. LUMPKIN: And that is true. I think that we do have to be careful of timing. The year 2001, I will describe as the year of big shock. We just yesterday had our first multistate agency meeting on HIPAA, and it went, actually it went the way I would have hoped that it would have went if I had planned it out ahead of time which was meeting with the governor's office and various staff from the governor's office of technology and the various IT shops and a number of state agencies, public aid and human services and public health and children and family services, and it started out, "Oh, my God we have got to do all this stuff," and then we got into and then there is going to be a unique number and someone saying, "Do you mean people are going to have the same number in dealing with all state agencies? Gee, that is wonderful," and then all of a sudden some lights went on and someone said,"You know, we are going to be able to do much better at finding fraud and all this stuff," and people actually started seeing the plus side.
So, after people get over the HIPAA shock, I think that we are going to get into a period of time probably not in 2001 but in 2002 when they get into the realities of what HIPAA is supposed to do and that may be a very fertile time for us to splash our more technical document out there.
So, I think the time frames kind of fit in coordination because I am just concerned that people right now, if we were to put something out more technical and more detailed people's response would be, "I just cannot think about it; you know, we have got the transaction rules and the privacy rules. Give us a break."
DR. MC DONALD: You bring up something that is kind of interesting. I think there would be tremendous benefits in that dimension even for the patient in not having to wait a long time to check in for whatever, but we don't have on the horizon at least still in the HIPAA an identifier. We could save 20 minutes per person in the hospital, maybe one-half hour just in the registration process if we had some kind of unique identifier.
DR. DEERING: I think that one of the things that we hoped through this report that could speak to the public and we hoped to get some of this language in the hearing in January is people building the cases to the patients and consumers themselves so that it helps if you like spilled oil on troubled waters in saying, "Here is the value of this," and couching it in non-technical terms, not in terms of just efficiencies and unmasking fraud but here is the value to the public of moving in this direction without necessarily frightening them off with the details but letting them absorb the value for themselves and possibly attenuate a little bit the anxiety.
DR. LUMPKIN: I don't think that either document should raise the issue of the unique identifier. That is a discussion that needs to be had on its own. We as the Committee may need to discuss whether or not we want to bring that issue to the fore again.
We certainly did before any of us were on the Committee. We tried to follow through on our requirement under HIPAA to raise and make recommendations on that, and it kind of got shot down, but obviously there is a need for someone to raise that sort of issue, and we should have a discussion in the Committee whether or not we want to have the lightning rod focus in on us which can be good or bad. I mean we are an advisory committee. We can take controversial positions, and we generally have terms. So, we know when our terms are over we are done with it, right?
MS. GREENBERG: One of the things I was wondering when you said that was whether recognizing that the Federal Government is not taking a leadership role on the unique client or patient identifier, whether states specifically Illinois or other states, and some have already developed a unique identifier for some of their data sets, whether that is something states are thinking of doing.
Now, admittedly this will complicate matters across states, but there probably are lots of benefits within a state and maybe with neighboring states or do you think that states are going to not touch that, also?
DR. LUMPKIN: I think where we got into trouble with the unique identifier and the way that we --
MS. GREENBERG: It was in Chicago.
DR. LUMPKIN: Yes, it was in Chicago, and I remember being there and I remember trying to conduct a hearing while talking to the press for 8 hours, but the way we could get around that is that our role may be just to recommend a format for a unique identifier so that if an entity chooses to use a unique identifier whether it be a state or a facility here would be the particular format for the unique identifier, and then just to toss that out because the concern about states doing it is the more states start doing it the more the multistate organizations or people who move from one state to another to get health care it may make things worse rather than make things better.
MS. GREENBERG: I just wondered what the thinking was out there.
DR. LUMPKIN: So, if we can perhaps move this discussion and let us bring it up not in February but let us put that item on the agenda for full Committee discussion in June on the unique identifier, revisiting the unique identifier.
MR. BLAIR: John, just a thought here and I wouldn't say personally, you know, I clearly have the views where I do not feel threatened by a national patient identifier or individual identifier, okay? So, that is my position. Now, my thought here is that there are so many areas where we could make progress when we get anywhere near close to this issue of the unique health identifier there are very, very strong emotions, and I would not say that -- I would say that there are valid fears and concerns and they come from different parts of our society. So, it is not just a group. It is different groups representing different fears from different sides, okay, and my concern is that even though technically what you have suggested is not a threat, I think we are dealing with people who have high emotions and any step we take towards the direction of a unique health identifier, they will perceive as a threat and they will wind up articulating the next step and the next step and the next step and wind up getting concerned.
So, my thought is that since there are so many other areas where we could make progress that we be careful to avoid that and the other piece is also the position that was taken by the Vice President with respect to indicating we have to be very, very careful to make sure we are not having hearings on that topic.
DR. LUMPKIN: By whom?
MS. GREENBERG: You see what happened to him?
MR. BLAIR: Okay, so even though yes I am on the record that this is something I am not threatened by and I feel is a good thing, I think we should spend our efforts in areas where we are less threatening to groups.
DR. FRIEDMAN: A couple of comments, one of which is getting back to the time frame, John. I do think and I don't know whether it is a subreport or a two-page version of the reports we already have or a memo or whatever but doing something within the next several months, and this is also, something that Ed Sondik suggested in terms of the health statistics report that puts us on record for a new administration makes a lot of sense.
I have never prepared at the federal level a briefing document, and I look to Ed and to Marjorie and to Mary Jo for guidance on that one, what something like that would be, but I do think it is something that should occur.
In terms of the unique identifier I am really torn because on the one hand I agree certainly with Jeff that I think the unique identifier has tremendous potential. I think it could be extremely helpful. Part of me says, "Oh, what the hell, let us put the issue, and if the thing completely blows up, it completely blows up," and at the same time I agree with Jeff. That is definitely going to blow up, and one of the things that struck me in some of the discussions we had or one of the discussions we had during the summer with John Fanning and Bob Gelman about confidentiality and the health statistics vision was the extent to which some of the assumptions that I have personally are just absolutely not only not shared but there are other people out there who have completely different assumptions, for example, about the identifier, and having said this I do think that if we push it forward that in some ways it would make more sense to push it forward in terms of what it could do in terms of health information and for health and not just what could a format be for it.
DR. LUMPKIN: I am going to suggest that maybe we can table this to some discussion in the full Committee, and I will just sort of toss in this little analogy. You know, when you go to the stove and you burn your finger you can either stay away from the stove or you can develop potholders, and I think that the tendency frequently in national policy is to just stay away from the stove, and I think there can be ways to approach this because we just don't understand what people's concerns are, and I think hearing those concerns is a very important step which may say that we do nothing or may say, "Okay, let us hear those concerns. Now, can we make a recommendation that will address them and still give an opportunity to people who want to have a unique identifier to have access to that?" because I think where we got into trouble was when we were talking about mandated identifiers.
So, there is another way to approach it, and hopefully we can have some discussion about it in the full Committee.
DR. WEINZMEIR: Are these some questions we could ask in January?
MR. BLAIR: Absolutely not.
DR. LUMPKIN: Because the equal rights amendment when it was being addressed state by state got linked to the question of choice, and it was killed in state after state not because it addressed the issue of equal rights for women but because it was linked to the issue of choice, and we don't want to link the issue of any of these documents with the unique identifier.
DR. HUNTER: My concern is a little the converse and that is that they may be viewed as inherently linked anyhow, and I think to the extent that the health statistics vision document gets more specific in talking about privacy and access and a lot of the things we talked about with Velma, Andy and others it will start to call the question of what do you mean, privacy of what and talking about data sharing and linkage, how do you do that and the same thing on the HII.
I think there is going to be some further discussion and so I think the issue becomes how do you channel and that is the discussion rather than by dodging it, and I think we can structure the reports themselves or the next round of the reports or even something where I think an excellent idea would be to have some letter or document from the Committee that just merely calls attention to the fact that the Committee is already working on these things so a new administration doesn't have to start from scratch because it may not be easy for us to raise these through administrative channels, but putting them in terms of a plan to have hearings around how best to protect privacy and sort of the indirect way of showing that we have a way of dealing with public input on these things I don't think we would raise it directly, but I think it is going to raise itself directly, and we ought to be sort of anticipating how it gets dealt with in these specific reports because I think it already comes up in general terms.
MR. BLAIR: The concern about privacy and confidentiality may turn out to be one of the potholders.
DR. HILTON: I favor carry out, myself.
DR. DEERING: I just wanted to pick up on the communications aspect, and one of the things that we have all heard is about selling the value of what we are doing, and it seems to me you can simply not mention the unique identifier. You don't even talk about the concept of the unique identifier. You only talk about the functionality and the value of the functionality that is behind it without saying that you know how you are going to get there because I think that the functionality can sometimes sell itself.
So, you sell the sizzle, not the steak as they say, and I think that is one of the points that we are trying to do in our scenarios and one of the ways that we will tighten our report is to let people see themselves in a scenario and say, "Hey, I would like to be there," and we haven't told them what it is going to take to get there because we don't really know what it is going to take to get there, and so I think that the sizzle is a valid communications approach.
DR. LUMPKIN: And I think the big concern for the NHI is going to be are we creating a single database because everybody keeps on going back to that.
DR. MC DONALD: I liked the way you handled that before.
DR. LUMPKIN: And we talk about it, and we emphasize it at every presentation that I do. I have got a particular slide that says that this is not a single database. Everything is going to be distributed and basically health information is going to be health exactly the way it is now except in electronic form and can be shared just as paper records can be shared.
So, I think that is going to be the issue that is going to come up from groups who are very, very concerned about privacy and there was a recent poll that was done where the questions were asked that had that sort of as an implication, and I think we just need to be sensitive to that piece, and we can expand that a little bit in what we are saying about linkage everything, not only that it is not a national database but there really is no need for a national database, and I don't think we really clearly enunciate that, you know, that we can bring things together by linking data and the value of linking data from different disparate sources.
DR. STEINDIEL: I think we have to be very careful. There was a 1940-something paper on record linkage which I think is the first time that the term was coined, and it talks about you can put each one of these medical documents as a page in an individual's book of life, and the goal of record linkage is to put that all together into a single volume. So, even the concept of record linkage from its inception has been doing some things that people don't necessarily want to have happen.
DR. LUMPKIN: What we have to do is show how that ha good sides.
DR. DEERING: In 1947, they didn't have the technology of distributive technologies that we have here. So, they might not have been able to concentralize a distributed book of life. You have one page, and you have one page, and you have got one.
DR. LUMPKIN: I have to dig up the article.
DR. HUNTER; But somebody can still read the book.
DR. LUMPKIN: I think though that we have got some reasonable time frames that we all seem to be roughly comfortable with. On the issue of the transition just in time frames does anyone know how many advisory committees report directly to the secretary, because most of them do not?
MS. GREENBERG: We can find out from the person in the Advisory Committee Office or the Exec Sec. There might be a fair number although most of them, I agree, probably report at a lower level.
DR. LUMPKIN: Because we may need to look at if the number is relatively small, then we may want to develop a short report from the Committee to the new secretary, kind of where we are in the status of the activities of this Committee, one of the few advisory committees, hopefully, that report directly to you and you ought to pay attention and depending upon who the new secretary is there may be some interest. At least some of the candidates, I think would have a significant interest in our area.
DR. HUNTER: I think whether it actually reaches the secretary, the wider distribution could really be useful. It is one of these virtual things. It just tells them that we are interested in technology and infrastructure and vision, and you don't have to start from scratch. You have got people in your department. You have got an outside committee. You have got a process. You have already got volumes of testimony. Some of them may have been witnesses.
DR. STEINDIEL: You probably need some type of straw man document for the February meeting because I would see that need to go up soon after the February meeting.
DR. LUMPKIN: Okay, we have had some kind of discussion on this next item which is how these two documents interrelate. We have had discussion and kind of chomping at the bit of getting into what will be in each one of these in the iterations.
Now, let us talk a little bit about integration, and perhaps to get this started I think that conceptually as we are developing the NHII I think when we develop the technical document we want to borrow heavily on those areas addressing population health from the health statistics document and I think that that is kind of the relationship that I would see.
So, the timing becomes important as well. We don't want to steal the thunder.
DR. FRIEDMAN: I think that is true, and I, also, think as we are discussing, I mean the integration goes both ways, and I think in both the interim reports we acknowledged the other documents but it really did not go much beyond that, and I think that in the health statistics we need to more than acknowledge it. We need to acknowledge the NHII as essentially the superstructure into which health statistics fits and specifically point to what part of the NHII the health statistics vision fits into, and I think that within the NHII report in particular we need to be sure that our discussion of the community health dimension includes very explicitly the functions and the definition of health statistics that will be in the health statistics report, and then I think a question becomes to what extent do the recommendations need to reflect each other, and I completely agree on the timing issue as well.
DR. DEERING: To the extent that our first report is going to probably still be closer to what our current interim report is again, broad, vague and fast, to the extent that we pull in things that are already there and already validated in your report then we are neither stealing any thunder nor going too hard or ahead of itself. So, I don't think we will have any problems with that.
DR. LUMPKIN: You see one of the things we talk about in the NHII document is that much of what is the conceptual model for the provider dimension is embodied in the IOM report and now if we were to write it the recommendations for patient medical record information and electronic transmission thereof. So, we kind of define that and we may go into more detail then on NHII and say that much of what is in the community dimension can be best described in the 21st vision with some other pieces that we may want to talk about how that links up and so forth.
DR. STEINDIEL: The sense that I get is where we have a little bit of a problem in the NHII report is we need to be a little bit more explicit in how the personal health dimension interacts with the community health dimension in both directions, providing information and whether it does or it doesn't and what type of information comes back from the community health dimension that can be applied at a personal level.
DR. FRIEDMAN: I agree with that statement. I think another tension that was being played out in the writing of that report was to the extent to which we are talking about community health dimension we were talking about essentially aggregated de-identified data or were we talking about what I think of as, quote, health statistics data, but in addition surveillance data and data that can be used for case identification and case intervention and certainly one of the things that we need to grapple with and that we started talking about in terms of the health statistics report is that increasingly the lines between the one type of data and the other type of data are becoming blurred and personally I think they should become blurred, but it is not as if we can put the data themselves in completely different categories and say, "Okay, we are collecting these data so that they will be de-identified and aggregated, and we are collecting these data for case identification, case intervention," and I think that is an issue that I don't think we did a particularly good job in either report in really putting our fingers on it.
DR. LUMPKIN: But I think in the presentation to the Healthy People 2010 your presentation that you put together on community health dimension where there was that continuum, I think that is a very good way to describe it, that once you get an identifiability of that data it is dependent upon the use for which it is going to be put.
DR. STEINDIEL: I think we understand that, but I think we need to clarify that, but there is another piece and this is something that I think we need to add in in greater detail in the 21st century which is the issue of surveillance. Whether that surveillance be the kind of surveillance that we do for infectious disease where you identify cases in order to intervene; somebody who has tuberculosis there is a public good for knowing that that person has tuberculosis and how they are being treated and I think that there is a whole new couple of generations who have not grown up in the age of the ravages of infectious diseases who don't understand that, and I think our documents need to be much more clear on the benefits of that, of why it is important for that information not to be at the consent and the choice of the individual.
DR. HUNTER: In TB there is a great example of how these things are very hard to differentiate and while TB case surveillance clearly historically and currently is linked to intervention and I think that easily is easily explained as a public good we do TB, and you wouldn't call it surveillance because it is not tied to the intervention but we do TB monitoring as part of our HAN(?) survey where we with the consent of an individual we do blood testing and we do skin testing and because of the mechanism through which it is collected it cannot be used because of the consent involved and the legal requirements. It can be used to go back to the individual.
So, it is the same information perhaps collected through different mechanism or under different authorities but totally different applications, and you have to decide what is the appropriate mechanism to use for which purpose. You may only get a true national seroprevalence estimate or a TB prevalence estimate from either an anonymized or something where there isn't the threat of an intervention and on the other hand you wouldn't rely solely on that because you couldn't then intervene, but it is where that privacy meets the application, meets the mechanism.
DR. LUMPKIN: But you mentioned a very charged word when you said, "Seroprevalence," and it seems to me that both our documents may need to discuss setting a health information ethics panel debate resolution process because our ability to use information to improve the health is hampered by our inability to discuss that, and a good example is seroprevalence studies for HIV, and you know the issue was do you notify when you do seroprevalence studies on cord blood; do you notify the positives, and if you do that then you are disclosing the HIV status of the mother. The solution to that was stop doing seroprevalence studies and that is shying away from really having these kinds of debates, and I think we need to perhaps in both reports emphasize the need to have a mechanism to have these sort of public debates to reach some conclusion. Otherwise many of these issues won't get addressed.
DR. STEINDIEL: Yes, that is a consciousness-raising issue. It is very important in these reports to say that we are moving on to some new ethical areas that we have been shying away from.
DR. HUNTER: DNA and the whole, I mean the TB thing was very hard to explain to TB program people who were the users of the data that if we found a case they couldn't have it but to not do it then would be denying us the opportunity to have a real measure of TB.
MS. GREENBERG: We do notify the individual.
DR. LUMPKIN: Of course, the violation is of state law but then you are the Federal Government. So you don't have to worry about that.
DR. FRIEDMAN: Bob Gilmer did propose when we met whenever it was during the summer that we put together what he called a market basket of issues and potential solutions, and I still think that is something that makes a great deal of sense, and I think in both of the reports I think we tried to deal with it somewhat explicitly in the health statistics report and at the same time Bob goes through that very carefully and I very much appreciated it. Really he was one of the most careful, I think he was in fact our most careful external, as it were reader, and every time he read it and it wasn't being nasty but he would come up with really sort of what do you mean; what do you mean, and it really helped to clarify our thinking and we tried to be explicit and at the same time I think at the end as I look back on it my own feeling is we still did not, we weren't as clear in identifying those issues as we could have or should have been, I think partially because we didn't particularly want that to be a show stopper, but at the same time in some ways what Bob is saying, I think implicitly if you don't identify those issues explicitly, it is a show stopper anyway. I am not sure where I am taking this, but I do think that having that be explicit about that discussion and trying to be is explicit as possible is extremely important and even perhaps at the January hearing that is the only, I think at least in terms of the relatively popular press has done a good job trying to identify some of the trade-offs and it would be interesting to see what he has to say about it in terms of those reports.
DR. LUMPKIN: Do we feel comfortable enough in the interrelationship of both the processes in the two reports to begin to dive into the individual reports? Are there other cross-cutting issues that we need to address?
DR. WEINZMEIR: Are you going to try to write anything when you release the first report about the two an dhow they fit together?
DR. LUMPKIN: I would think that the short time frame document, the popular document that we are looking at for the spring, that that would certainly make references to both the current document from the 21st century as well as the ongoing work of the Committee, of the work group. I think we would want to include that.
DR. WEINZMEIR: I just picked up some confusion among the people who were at those hearing of trying to understand it. They didn't see it as sort of separate activities.
DR. LUMPKIN: And they are not. They are kind of like the nested dolls that you get from Russia. One fits inside the other.
DR. WEINZMEIR: Is there some way to make it more explicit that we do understand that here are some things that are shared, some little report that just says that here are some things that both reports will address and the second one is going to come out later? Is there something that shows the group understands this?
DR. HUNTER: You mean like a forward to some report that comes out with a picture of the nested dolls or something else to help people anticipate where the thing that is not yet done would fit into it?
DR. WEINZMEIR: Yes, I am just thinking that 6 months later the vision report comes out and people say, "Wait a minute; you just released this other report, and now you are doing this," and maybe I am a little, you know.
DR. STEINDIEL: We are implicitly treating them as combined documents because we hold the hearings together. We hold the meetings together, and I think we need to make it something in fact that says that these are at least companion documents.
MS. GREENBERG: Probably although I don't think it is necessarily the sense of most people here, me included but when we had a conversation at our monthly health statistics vision conference call last week I guess Barbara Starfield who wasn't able to be here today, she said that she actually thought that they should be one document, but we didn't have a lot of time to discuss it, and I can't say that she wouldn't be comfortable with what we are discussing here, too, but I think some people see a greater need to really connect them. I think it is clear that they have different roles and audiences and purposes to some degree and that is the advantage of not just going into one report, but there seems to be a greater need to explain, you know to kind of connect them, and given that you are still planning on doing this broader document in the spring, I think that is a good opportunity to talk about both with the kind of introduction of the implying or saying that the health statistics now is going to be developing more of a road map so that they are sort of together but going off now and doing something more specific as was the feedback that we received during the hearings and that you are going to be doing the same with, you know the NHII is going to be doing the same with the more technical document, so that that could be a really nice opportunity for them to come together and then go off.
DR. LUMPKIN: Jeff?
MR. BLAIR: I think the two documents and the interrelationship between the two documents is something we feel very comfortable about in this room and that we feel makes a lot of sense and a lot of logic first to go forward with that if we want to try to be sensitive to, again, the folks that may perceive this somehow as being threatening to them. I think we should consider that instead of going forward with two legs, the idea of health statistics and a national health information infrastructure which I completely support; I feel comfortable with this, okay, but that in terms of how we bring it forward to the public we should consider maybe bringing it forward as three legs instead of two and that the third leg is a very strong emphasis on the need for privacy and confidentiality and security, and I think if we do that then we accomplish maybe several things, No. 1, we may reduce concern of some folks that might feel threatened by it directly. We, also, might position ourselves in the future so that we have a reputation for being out in front on the privacy and confidentiality issue, and if we bring forth other technologies in the future, other identifiers in the future, we may be perceived to be already very focused and committed on privacy and confidentiality and that may serve us in the long term better.
DR. LUMPKIN: But there is a couple more legs. The work of the Committee on Standards and Security is not independent from the work that we are doing at NHI and there is ongoing work on standards for patient medical record information, and I think we need to in the broader interim document we need to bring that leg in, also.
MS. GREENBERG: Standards for administrative data and everything that they are doing is relevant, and I think you want to bring in the population subcommittee as well.
I mean I was thinking about this document which i all things to all people, and it is two pages or something introducing the Committee to whomever, but I think it is a very good idea, and I think using these two reports as sort of the conceptual framework and let us say that you want to be able to bring in, I mean the standards and security subcommittee is an easy one compared to some degree to the populations one because it is evolving, and there are lots of issues there, but at the same time you have got to bring that one in, too, and then of course you have got the confidentiality. So, I mean in that sense you have got sort of three legs in the Committee.
I mean we have got the standards and security. You have got the population and you have got privacy, and it could be -- I see the doughnut rather than the whole but you see anything that has already been going on is the kiss of death to a new administration, particularly when you not only have a new administration, you have a different party and all of that, but to some degree these are very complicated and highly charged but important issues.
It could be somewhat comforting to know that there is an advisory committee there that has been looking at these things and of course because you are an advisory committee you are less threatening too, because we don't have to do anything you tell us to do.
DR. HUNTER: You have been dealing with them on the outside rather than dealing with them from the inside.
MS. GREENBERG: Exactly, right.
DR. HUNTER: That is why you want to call attention to this rather than something going on in the department.
MS. GREENBERG: Exactly. We have been hearing from people. We have been out in the field and all of that.
DR. HUNTER: It is not the doughnut and the hole. It is doughnut and the chad.
MS. GREENBERG: We have been pregnant with thought.
MR. BLAIR: We couldn't get through this day without something. I am sorry.
DR. LUMPKIN: And without my rejoinder which is that Catherine Harris, the Secretary of State from Florida has got a new position in the Bush Administration. She is going to be ambassador to Chad.
MS. GREENBERG: Did you two work this out in advance?
DR. LUMPKIN: Okay, moving back, any more thoughts on how the two reports interrelate and other legs of this NHII stool?
MS. GREENBERG: When was the workshop they had, what was it a year ago? It seems like longer.
DR. HUNTER: Oh, the actual report?
MS. GREENBERG: Yes.
DR. HUNTER: We have to put that on the list of things to go and ask them.
MS. GREENBERG: I was just talking to Ed Sondik yesterday about it. I realized that we didn't think we had seen that.
DR. HUNTER: So, there was a great deal of momentum back at the time of the 50th anniversary, and they were pushing for whether they could include some of the attachments.
DR. LUMPKIN: Let us pick up our lunches and have a working lunch.
(Thereupon, at 11:55 a.m., a recess was taken until 12:15 p.m., the same day.)
AFTERNOON SESSION 12:15 PM
DR. LUMPKIN: Okay, Dan?
DR. FRIEDMAN: Our highly preliminary discussions of the report have been trying to develop it as a planning document. The very, very first iteration we thought in terms of essentially four sections, and this has not been as it were market tested yet, starting out with a statement of what do we have now, then moving to a discussion of what is health statistics, moving to what do we mean and finally how do we get there and the what do we have now discussion would probably largely reflect what is in the interim report with the addition of we have tried to develop or we are in the process of developing essentially a template which would enable us to identify essentially what are the different variables that impact upon population health and there is a variety of models like this that currently exist, and one of the differences between what we would be developing and what already exists is we would not be specifying directionality or relationships. We would really just be trying to develop a model that specifies impacts on population health and using that model to identify what do we have now in terms of health statistics system and what are the gaps in the health statistics system.
The section on what is health statistics would also, draw upon partially the current interim report, would include discussion of definition, what do we have now in terms of roles and functions, the value of criteria for health statistics systems which is something that we did not develop in the interim report but we discussed continually through this process as being an important part.
I doubt that we could be as specific as the CDC evaluative criteria for public health surveillance systems but it would be wonderful if we could because I think that was an MMWR supplement that came out in 1988.
PARTICIPANT: And the next edition comes out in 2001.
DR. FRIEDMAN: That has been, for those of us who do surveillance work, has been extremely helpful and very influential, and then a third section would be focusing on what do we need that would include a restatement of principles, a broad statement of goals, i.e., recommendations, discussion of integrated national, state and local and public and private roles, response to identified issues as well as response to data gaps and then the final section would focus on how do we get there and i think that would much more specifically respond to what Don Detmer described as the designated driver, the road map and possibly the budget, and I hope that would really be in terms of not only goals but also fairly specific operational objectives as well. So that is where we are now.
DR. MC DONALD: How big a document are you thinking of?
DR. FRIEDMAN: How big a document?
DR. MC DONALD: Yes.
DR. FRIEDMAN: I haven't thought in terms of page numbers. I certainly wouldn't want something particularly long.
DR. MC DONALD: This is 23 pages.
DR. FRIEDMAN: How about 46?
DR. MC DONALD: That is a good number.
DR. FRIEDMAN: We are not thinking of something that is an encyclopedia. We don't want something that is encyclopedic. I mean I think we want something that is pointed, relatively brief and that really does give specificity as to what needs to be done.
DR. LUMPKIN: Questions?
MR. BLAIR: Obviously we have multiple audiences for these reports, but if we do a report with multiple audiences usually there is one audience that might be the primary audience. Who do you envision as the primary audience for this report that characterizes the tone of the way we express things and the way we tend to relate things usually to that primary audience?
DR. FRIEDMAN: This is not answering your question, but I would say that two definite primary audiences and in the ideal world a third primary audience and certainly people in the business and I would include national, state and local as well as private.
Second, it would be if we don't have the report in some way addressed to people who are going to be writing the checks I think it will not be a successful report and then third and I think absolutely most difficult is some sort of a quote, public audience, but it may be that if we can reach the people who are writing the checks then that will be just as good, frankly, as having the public audience. Is that an answer to your question?
MR. BLAIR: I am not sure what the right thing is to do. My question in my mind, I am bouncing back and forth between for whether it is the people who write the checks as the primary audience and then we accommodate the public or whether we should write it towards building public support and then have more detail for people who write the checks. I think the report will come out differently depending on which decision we make.
DR. PARRISH: The first group you mentioned which is sort of the statistical practitioners, if you will, I am assuming that is what you are saying is the primary goal of the report vis-a-vis that audience to try to get them to change their practice?
MR. BLAIR: I sort of feel that the people who write the checks are more likely to support this. On the other hand with the public at large I think we would be writing it more in terms of this is the kind of information that the public needs to receive better health care and relate it to them, and I am trying to think of how critical it is for us to have public support. I don't have an answer. It is a question.
DR. HUNTER: I am not sure I can picture a way to get a report of this nature in front of the public, you know, writ large in a way that is really compelling and makes it something they choose among the many choices they have of things to take up and act on as the one thing they take up and act on. Yet I don't think we can ignore some broader appeal that goes beyond insider type inside the beltway and inside health care agencies. So, I think the policy type people are somewhere in the middle, and they should be led to understand what it is that it takes to produce information that they need for policy purposes and that their constituents will need for decision making, but on the functionality side let people, I just don't see that we are going to be able to. If we really targeted this at the level of public and understand I am not sure the public would care enough so that I am not sure that the report would then be useful enough to the rest of the audiences. I mean there may be different pieces of this that are the equivalent of a kid's page on the Internet that speaks to people who wouldn't want the insider type of thing, and I would think we would want to keep the insider language out of this like we did in the interim report but have it be somewhere in the middle where it is educated, maybe someone who is in the health field but not necessarily an information oriented person or a statistics oriented person.
DR. STEINDIEL: You used a word that wasn't used before as a target audience and that was the policy makers.
DR. HUNTER: I think that is those who write the checks as a standard shorthand.
DR. STEINDIEL: Policy makers and legislators.
DR. HUNTER: I meant that, yes.
DR. FRIEDMAN: Which answers the question about changing practice of people in the field. My initial reaction given this enormous question of changing perspective because I think if you talk to many people in the field as it were unfortunately the response that you are going to get is "We can't change the practice." It is sort of perceived truths, whether it is from CDC or HRSA, etc. There is I think a sense of lack of ability to take independent action.
So, I guess in a sense I think where we are going is that the policy maker slash legislators in fact should be the primary audience.
DR. PARRISH; And through their actions they may in turn affect the practice of the statistical groups.
DR. STEINDIEL: If I can make a comment I think the comment I am going to make really applies to both reports and it is somewhat in answer to Clem's question, how long a report this should be. I think there should be a report, and we ought to consider more appendix material and some of the appendix material should be highly technical so that the people who are practitioners in the field will buy into it better, because they will read the plain report that is aimed at the policy makers and say, "What do they really mean by this; how does this fit into my technical world?" and the NHII report I was thinking of mentioning that one of the things I think we should think about is an appendix that should be written by Kepa that is highly technical, you know to show how the technical systems can protect privacy and confidentiality.
DR. LUMPKIN: And if Kepa was here, he would volunteer.
DR. STEINDIEL: He is not here. So, I am volunteering him.
DR. FRIEDMAN: Steve, does that mean that you agree with 46 pages?
DR. STEINDIEL: Yes, I think somewhere in that neighborhood is good for the report that goes to the policy makers. I think anything over 50 pages they don't even look at it.
MS. GREENBERG: I think shorter than that, myself.
DR. STEINDIEL: Yes, but I was being generous.
DR. HUNTER: A three-page executive summary and a 40-page report.
DR. WEINZMEIR: When you say, "Policy makers," do you mean at the national level or the local level, too?
DR. STEINDIEL: It has to be at both levels.
DR. HUNTER: Just one other thing on this policy maker thing, I wonder if this is really designed to change people's practices. I think if you were to look at individual people practicing in the health statistics world, whatever that is, you would find that they are advocating for different things, each of them with some backing without some framework that they would fit into. So, part of this is to have them take this perspective in the way they are picturing what it is they need at their level by giving them something they can show to their decision makers and their policy people whoever the relevant people are that are making decisions about their direction and show them where it can fit into something where if we are all sort of pointing towards the same we all have a series of action steps that we are carrying out. We may have multiple audiences all of which are moving towards the same thing.
DR. WEINZMEIR: That is why I asked if policy makers isn't one audience.
DR. FRIEDMAN: I think I agree. It is something to think about, and we are also going to have to think about where the most receptive audience is likely to be because certainly with the exception of a few states getting the attention at the state level for these issues is pretty difficult.
DR. LUMPKIN: One question I have in looking through and this gets back to our discussion of integration and I am not sure I know the answer. So, I am just going to ask and that is the document focuses in less on surveillance and more on essentially de-identified population-based data.
Given our discussion today are we still comfortable with that scope? Should it be broadened out a little bit, a lot?
DR. FRIEDMAN: I see it as focusing not on sort of de-identifying but on data not used for case identification and intervention.
DR. HUNTER: I think generalizable population oriented rather than case specific or administrative oriented or some of those things.
DR. LUMPKIN: And do we include registries in this?
DR. FRIEDMAN: I mean to the extent that those produce data that could be generalized and that are used for policy and programmatic purposes as opposed to case intervention purposes.
DR. MC DONALD: Why do you make it on such a fine line though? If we are talking about information that doesn't have those borders, that is in the, I mean politically just to de-emphasize that or do you want to say that it is not going to have any, I mean we have immunization registries for the people who need immunizations.
DR. LUMPKIN: I think what I am struggling with and this really is more as we define what the 21st century vision is, it, also, emphasizes what needs to be more detailed in the NHII document and also the rationale that is made to the policy makers because it is a little bit easier to understand what role a registry for immunizations plays than it is a registry that may be used to determine the link between location of residency and certain kinds of carcinomas. So, those kinds of things, whether the community is at risk or which type of risk; so, I think that some registries may be included and others not, but the key issue is the data that is being collected to speak about a population, and I think the reason why it is important to have that documented is this is probably the least understood thing that we do to the public and policy makers.
DR. HUNTER: I think there is one other note on that. I would think we would want to draw some links between, while singling out an immunization case the fact that an immunization registry is a good source of information on the population and what levels are and where pockets are that need to be addressed and that this report would be like an HIR report encourage the sort of secondary uses of systems that are set up perhaps for a single purpose. We wouldn't try to squeeze in all information uses that aren't sort of this community population based kind of thing. So, I mean I think they are going to be in there sort of as either surveillance data developed for case identification and certainly to inform of the health status, but we wouldn't be talking about those applications as the primary focus of this report. So, the recommendations might be more build systems for those purposes that have multiple applications including population-based applications but not necessarily including in the scope of this instance that would address other primary purposes that might belong somewhere else.
DR. LUMPKIN: So, have you just defined a hierarchy in a sense because there are those recommendations that would be addressed to using systems that exist for some other purpose and then there are those recommendations about those systems whose sole purpose is generating this information?
DR. HUNTER: And maybe backing up one level there may be recommendations for the development of those systems for those other purposes that would then make them more amenable to using it for the purpose of this report.
DR. MC DONALD: I am worried about the emphasis on the word "systems." It almost sounds as if you are talking about building computer systems which isn't bad but that emphasis hasn't gotten us anywhere, and you have them in public health. They are all cubbyholed and they are all stovepiped and that will always be that way as long as you think about building an application instead of building data flows.
DR. HUNTER: I wasn't using system in the computer sense. So, I shouldn't use that term, if it is taken that way.
DR. MC DONALD: I think you could imagine and of course every time we get into something that would really be efficient and useful we collide against the sphere of privacy. So, we may be sort of in a deadlock whenever we really get to the easy -- I mean you could imagine it is not just what you want to know, immunizations in kids, but it wouldn't be bad to know immunizations in adults. It wouldn't be bad to know the people who have the right preventive care for all the different things we know we have for them, cholesterols and all the rest. We could do a lot better job nationally than we are with appropriate stuff some of which has been tried to be invented by the marketing people but I mean basically there are these huge opportunities if one can imagine having data flow that you could control so they couldn't get in trouble and you could then use to have pretty good public health premises, but there is a difference in approach between a primary and a secondary system.
The primary system like you can put in there, you have got a consent. Once you have consent there are certain things that won't be revealed unless consent is given, you know, the behavioral risk factors survey there is consent. Are you willing to answer about, and then there is secondary where you using other data sources to generate information that tells you things about a population and that secondary source you run into less problems with the privacy folks in the secondary than you do in the primary because you can build in the privacy pieces because the data is collected in the primary, is collected for the purpose for which it is used and in the secondary it is collected for some other purpose and then has some utility.
MS. GREENBERG: That is where you run into more problems.
DR. LUMPKIN: And that is where you run into problems.
DR. HUNTER: I think in this report we already have started to deal with pushing backwards towards making those system collected through some other purpose, more useful for the secondary user and the more you push back the creators of those other databases probably ought to do it. So, it is more useful when you start pushing the privacy issue and the unique identifiers and standards issues and some other things, but you are rarely picking up an existing database and just settling with it.
DR. LUMPKIN: But I don't remember and again I have to admit it has been a while since I read the document in detail. How do you decide whether a secondary system should be used, that the risk to privacy, the other risks that are associated are in fact of benefit because that is what you have to convince people? In Illinois we are trying to struggle with whether or not to import vital records which we think is a problem with Illinois law into our immunization registry and so we have to look at what the risks versus the benefits are, and if the benefits are just to keep people from having to enter in two or three fields when they first enroll a child, it may not be worth it, but if the benefits are it gives us a much better description of where the challenges are to improve the health of the people in the state then that is a worthy benefit, and I think people want to know on the privacy side that someone has done that sort of an assessment, that they are not just looking out of curiosity but they actually see a benefit to society in using these secondary sources.
DR. HUNTER: Actually that could be one of these, maybe a more technical discussion with a parallel kind of generalized discussion, and there is a whole bunch of issues obviously in using secondary data sources. There is the quality of the data source. There is the completeness of the data source. There are the other issues to do with access rights and proprietary things, and maybe there could be more of a discussion of how you would want to use those rather than collecting data primarily and under conditions that it is appropriate and isn't.
I think kind of underlying a lot of this stuff and there is one of the 10 principles is collect data once for multiple purposes which implies a lot of secondary uses and we weren't really very explicit about when that works and when that doesn't or how one makes it works, and that would be part of the blueprint or road map.
DR. PARRISH: I have one more question. The comment was made earlier about this is principally for policy makers. Yet, some population level data can, also, be used very directly for community interventions in the same way that individual level case data for TB is used for individual patient treatment and follow-up, and are you in fact staying away from this kind of population data and its use for actual community interventions? For example, you might want to undertake an ad campaign or something specifically targeted to teen-age smoking and you actually want to collect aggregate data somehow that is used to monitor that, the progress of that. That would be a little different than collecting data on teen-age smoking in the community just to say that this is a problem.
I am going back to your comment about how these things are really different and do you really want to pigeonhole it.
DR. FRIEDMAN: I think you are raising a point that a couple of other people have picked up on in various comments and when we did a presentation in September Garland Lamb specifically raised that as well and he also talked about using data for evaluative purposes and certainly when we wrote the report we did not mean to exclude that, but I think it was not addressed nearly as specifically as it should have been.
In terms of the audience for the report though I mean that raises another point. We talked about policy makers slash legislators, We talked about people in the field. We haven't talked about other people in public health or population health, and I think that is something that we need to do.
DR. STEINDIEL: How do you deal with the community data that is actually point source like for instance a specific polluter in an area that is doing it that could be traced to health hazards? I mean I am asking that question because you know we have got community health. We are talking about community health, but you are actually identifying not an individual but a source. It is obvious that we do it. Is it analogous?
What I am getting at is kind of I am trying to make an analogy here. In talking about, we have discussed the privacy, the confidentiality and the security issues a lot, both in the full Committee and in this group, and I am wondering if we need to start focusing more and the word was used earlier today on the need for privacy, confidentiality and security and the emphasis is on the word "need."
What are the reasons for in the sense of the privacy advocate's violating the privacy and confidentiality and security of the individual, and there is an interesting example that Gail said to me yesterday. She gets this e-mail newsletter from a privacy group, and she sends it to me every month, and there was an interesting example that I think is from Illinois. Everything seems to come from Illinois, but it has nothing to do with health care.
DR. LUMPKIN: All the good things.
DR. STEINDIEL: And there was this privacy advocate who bought a car, and he was having problems with the car, and when he brought it in they found some hidden damage in the car. He bought the car used. So, he checked and he found out that the Illinois Motor Vehicle Registration records were online. He went in and he found who previously owned the car and called to ask that individual if the car was ever in an accident. Did he violate the previous owner's privacy? She actually asked, "How did you get my name?" and here he found a need even though he was a privacy advocate to find out an individual who owned the care before.
Now, when is the need for us to be able to violate the covenants we have made on privacy, confidentiality and security for public good?
DR. MC DONALD: I think we all know what you are saying, but it is the wrong way. I think we have ceded the battle in a sense. This is a new invention. The public didn't have more value than every individual. If you have got a big epidemic you are all going to be dead anyway. So, you have got to do some things. That is where it came from, and I think that we ought to at least take our own moral position that public health is important in its own right, and these other things have to accede to it somehow.
DR. STEINDIEL: But I think we have to define it better than that mantra.
DR. MC DONALD: I just think that we are so timid about it, and no one stands up and says, "For crying out loud we could lose the whole city."
DR. STEINDIEL: And that is what I am saying.
DR. MC DONALD: Define the word "need."
DR. LUMPKIN: I think if you look at some of the stuff that Health Tracks did with the Pugh(?) Environmental Commission over the last 18 months, and they have done a state-by-state survey and over 80 percent of the public believes that there needs to be some sort of environmental tracking that connects human illness to things going on in the environment, there is a public perception of need that we need to tie into and part of our problem may not be with the term "need" but with the term "public health," and when we throw it into the public health rubric then they think about health care for the poor and therefore privacy should not be sacrificed for health care for the poor, but talk about protection from environmental problems or infectious diseases, sure. Then there is an agreement on that and that gets back to that assessment of risk versus benefit in doing that sort of assessment.
So, I think as we begin to address this no matter whether it is a primary or secondary source we need to really get into --
DR. MC DONALD: Think of E. coli and hamburger. People are going to say, "Darn right I want to know." They get stirred up if we don't track in those epidemics. I think if we cast it right this should not be, "Oh, boy we may los 10 million people, but that is okay because" --
DR. LUMPKIN: But the other piece in this is the issue of the slippery slope, and a lot of us who are very interested in research and public health practice even population-based public health practice then tie in research and then all of a sudden that clear public acceptance gets lost and so we have to be careful how much we talk about and how we talk about research in connection because once you get into research the issue of consent I believe changes, and I think the public believes it changes.
DR. HUNTER: All the congressional discussions of privacy legislation have differentiated, tried to differentiate and one of the reasons they haven't succeeded is they have public health which is intervention oriented at least in the description but a wide open door to any public health agency doing research possibly and public health agencies probably do a disservice to themselves by arguing that anything they do is public health and not research and therefore is entitled to some exemption. So, there is the public blessed, they are the entity that can do these things, and they are entitled, and we know they don't violate people's privacy unduly and then there is research which is sort of a bunch of academics going fishing for something and they have to go through IRBs or some other kind of panel. It is a harder test, and the problem is that there are lots of things where the VEN diagrams overlap.
DR. MC DONALD: I think the public is still pretty supportive of research because it is reflected by the fact that it is not being shut down, that you have got to go through the IRB and there is a process and a procedure.
DR. FRIEDMAN: One of the things that I have found most surprising about the public including the NCEHS process that we have been through has been the apparent lack of awareness of the extent to which we currently collect identifiable data for a whole variety of purposes, and I have been, you now, there have been several times when I have been really surprised because other people, and I am not saying this negatively but you know our colleagues on the Committee have been seen to have been really taken aback by you have people's names and addresses for this and that.
DR. MC DONALD: Go to Sears.
DR. FRIEDMAN: I think the level of lack of awareness and I don't mean that the people on the Committee are less aware than people on the outside. I think the level of lack of awareness generally on what is currently being done and why is really high.
DR. LUMPKIN: And it is good and it is bad. I mean there are two ways it is good. They haven't gotten to the point yet, but the other one reflects the relative competence of the system in protecting people, and I use relative competence because it is not a bullet-proof system. There are holes all over the place, but it, also, speaks to an issue that we don't really address and it is one that I sort of come back to just because I am being sued over it and that has to do with our science on maintaining confidentiality of the information that we have which may be something we would want to address in the report.
You know, the issue of cell size and release that is all based upon research that is decades old. How do we actually improve our technology in releasing information in such a way that it can protect the individual's privacy?
DR. HUNTER: That is partly that market basket discussion. I don't know how the term came about, but it is sort of a grouping of issues and either solutions and certain best practices that exist now and in that case I mean we are just arguing within the department over the privacy regulation, like what is the level of population size that we go down to in order to consider something safe to release it with other detail, but then other things that are best practices, other things you might want to stimulate more research on and there hasn't been any systematic research on this funded by any public agency for decades, and it is not just a health issue. It is a census issue. It is every other type of data as well.
I think that would be a really useful thing.
DR. LUMPKIN: And it is something that has to be ongoing because as technology advances then what may have thought to be secure today may not be in 3 or 4 years.
DR. MC DONALD: I think the whole thing is going to be moot in 10 or 20 years. We are going to be overwhelmed by the technology in the long, long run.
The other part of this stuff about the shock, I almost think that there is a strategy to train the public to think a certain way by having leaders or people being shocked. I mean how can you be shocked by your name and address? Everywhere you go you write it down. I mean Sears, the movie store place, your driver's license, your rent-a-car. I mean how many times a week do you write down your name and address and if you didn't notice you are doing it, what the hell is going on here.
DR. LUMPKIN: But the difference is you choose to do those things.
DR. MC DONALD: You go to a drug store and you buy a condom or whatever you are buying that week. I mean it is all recorded on your credit card and this is conscious stuff, but there is some disconnect I think. People don't mind being shocked when nothing bad has happened except maybe in Florida once. I mean statistically --
DR. MC DONALD: No, I don't mean recently. I meant in terms of the release of really statistically you have got 260 million people and there are chances every day to get stuff released, and it is really a tiny risk by measured events.
DR. LUMPKIN: Two months ago the Kansas City whatever the newspaper is in Kansas City did an article on Catholic priests who died of HIV. Some people might consider that to be an invasion of privacy.
DR. MC DONALD: Dead people have no rights, not in many states, in most states.
DR. LUMPKIN: Right, in many states, but I think that we have to be careful about how much we rely upon this history because people have run into various examples of --
DR. MC DONALD: We should write the best possible cage around it.
DR. LUMPKIN: And the thing is that we should use the technology to protect it. Just as the technology increases the risk, it can also increase the protection.
DR. HUNTER: There is an example of the kind of thing where the shock value I think is, the potential is there. GAO has been preparing a report on data linkage among federal agencies and came around asking for examples of where we link our data, maybe a consent with an administrative database like HCFA or administrative files that weren't exactly, I mean there is a system of records and all kinds of privacy act issues and a whole host of different kinds of linkages, and their draft report really kind of points out that the agencies are really doing a fairly good job of applying some common sense and some rigor and there isn't a big risk, but it is kind of lucky that that happened because the agencies actually thought about this and have some good practices. There is nothing systematic out there that tells people how one should do this and it is, also, not obvious to the public that these types of things are going on, that this record over here is being matched to this record in a way that is benign and neutral to them and so part of the argument was that the more obvious this is the more public acceptance there would be of it and the less suspicion.
On the other hand, the more obvious it is, the more people are saying, "Are you telling me that my prescription drug file in Medicare is now going to be available under some new act or something?" So, I mean I think it is a real double-edged sword and probably the more it is discussed, the more reassured some people are going to be because they can say, "Oh, well, you are masking this record or that record or you actually have gone to an IRB or something else," but at the same time the more some large number of people are going to be shocked that this is going on and wanting it to stop, period.
So, I think they really struggled with the tone. Obviously we struggled with the tone even in the interim report. The more detailed we get the more this is going to be a problem. The more you advertise this and the more you tie it to the NHII report whether it will be potentially universal databases that include a universe of some class of records or individuals that amplify these risks, then this is going to potentially touch off some real anxiety. So, the more direct we are about saying why it is important the better.
DR. MC DONALD: The tone in one of these reports where it said that there is not going to be a database really said it right out loud, and I think we ought to all take that position because I think actually it isn't necessary for most of the stuff, and it will never be accepted politically, and there may be some argument for saying that we should break up these national databases into regions or something like that so that you do have a more appropriate fit to the locale and less big brother. We could go with the flow, but we do have the HCFA database which is good.
DR. HUNTER: That was the model for Clinton health reform was to have more localized databases and some people were worried that it is even actually easier to identify people at the local level than it is in some anonymous database at the national level. On any of these issues you are caught either way.
DR. LUMPKIN: Jeff?
I am more worried about my neighbors than I am the HCFA Administrator.
MR. BLAIR: As a person who comes from the information techie side of the house here I think that it would be wise for us in pulling together this integrated report to not have it driven by the information system side of it or the data side of it.
I think instead we should really have this whole integrated notion driven by the key national health care issues like you know when you wind up seeing these studies in terms of the people, Dan who has much more of a background in public health, if we are driving down from the issue of national health care goals and then we wind up from that saying, "Here are the data that we need to address those 10 national health care goals, and then here is the information infrastructure that we need to collect the data and analyze the data and here is the framework of privacy and confidentiality that is necessary to protect the public," I think that would be, No 1, it gives us a focus that I think is much more acceptable. It is not as obscure as the national health information infrastructure is to people. It is directed at our national health care problems, and then the information infrastructure becomes supportive. Privacy and confidentiality become supportive. I think we are on much firmer ground if we come at it that way, and that was part of the reason why I asked the question of whom is the audience, and in a sense I didn't quite understand with the terms but you ended up saying that the policy makers and the legislatures.
I would agree. As soon as you said, "Legislatures," I figured yes, that is probably the most appropriate audience. That is my comment. Does that work or not? Am I off base?
DR. FRIEDMAN: That is a very good suggestion.
DR. MC DONALD: I am not clear that you have a set of goals here, that this has got political instability in it. You have the public health notion which is old and things that are going on right now people know about. I agree the word "public health" doesn't answer the right things, but that should have some deep resonance.
MR. BLAIR: Let me just elaborate a slight bit more? I am weak ground here because this is really not my area of expertise, but one has to title the reports that had DALYs and help me with this but adjusted life years. I have forgotten what the D is.
MS. GREENBERG: Disability.
MR. BLAIR: Okay, and when I looked at that as an attempt to wind up helping us prioritize on a national basis or local basis the most severe impacts on productivity, on our life, on our healthy life styles as well as things that cause death that at least appealed to me as somebody who is not in public health as a very logical credible thing that I was able to understand and it wound up listing the major health are problems and you know I don't know what criteria you may want. You may want to pick something other than DALYs to come up with those key lists, but whatever it is it winds up requiring data to be able to address those issues. So, that is, Clem what I was thinking of.
DR. LUMPKIN: Now, of course you realize coming from Chicago when you say, "DALYs" we think of something else.
MR. BLAIR: I forgot about that.
DR. MC DONALD: They would be the ones that affected young people as well.
MR. BLAIR: Right across the population.
DR. LUMPKIN: But I think the issue, and, Jeff, I would just argue with one term. I wouldn't use health care. I would say, "Health priorities."
MR. BLAIR: Yes, thank you.
DR. LUMPKIN: And I think that is really part and parcel of what we are looking for the report to address is how we as a society first of all identify the health priorities and then subsequently begin to address those and assess our success in measuring and being able to impact those health priorities in a positive way and to improve health and reduce disease and disability.
MS. GREENBERG: I guess I am not sure where we are coming out on the extent to which the health statistics report is going to address some activities that clearly have to be in the community health dimension. I mean it is at more the surveillance or person intervention.
DR. LUMPKIN: I don't think that is going to be part of the 21st century vision.
MS. GREENBERG: It is going to be more in the community.
DR. LUMPKIN: And so that means that as we are doing additional iterations we refer to the health statistics piece in the NHII document and then fill in the part about the surveillance, you know, the person-directed interventions and the data systems that would impact on.
MS. GREENBERG: I think we don't want them to be totally separated from each other either.
DR. HUNTER: I think we wouldn't focus on it, but I would think to the extent that surveillance system however you would define that and not to use the system word in the computer sense which is a point well taken, to the extent that they generate population --
DR. LUMPKIN: Information technology doesn't own that word.
DR. HUNTER: But to the extent that they hear it and think they do, but to the extent that those types of mechanisms generate useful statistics for population-based community intervention or descriptive statistics or research based statistics I would think we would want them --
MS. GREENBERG: And vice versa.
DR. HUNTER: Yes.
MS. GREENBERG: There are certain problems that then you might really need to zero in with one of the direct --
DR. HUNTER: Right.
MS. GREENBERG: I think we are going to have to find some ways to make the connections clear, I mean the differences and the connections because the risk otherwise may be putting anything that isn't directly for the public health intervention into the whole, as we were saying the sort of research basket and it is nothing against research but I mean the research as it were that is done of monitoring of whatever that is done in the public health databases is different than grant research in universities. Some of it is the same but I mean some of it is different, too. Maybe it is similar work, but the focus is somewhat different.
DR. LUMPKIN: So, should there be a brief discussion in the 21st century document of the community health dimension of the NHI and what is included in this document and what is not and sort of why?
DR. FRIEDMAN: Yes.
DR. MC DONALD: Just be aware that half of the stuff that is morbidity and mortality reports could just as well have been in a journal. You don't want to draw these really hard lines.
DR. LUMPKIN: Some people consider that to be a journal.
DR. HUNTER: It is a substitute outlet for --
DR. MC DONALD: This is the work of the public health activity and it publishes research.
DR. LUMPKIN: And one of the issues, and this is kind of an aside and a little bit of hyperbole but health departments, state and local health departments are generating new knowledge all the time during practice, and it is never shared because they don't write it up. So, that is one of the problems. Some of it gets written in MMWR but that I don't believe is in the Medica, is that indexed?
DR. LUMPKIN: Okay, so some of it is accessible. Other stuff is just kind of you see and hear in meetings, you know, we looked at this, and we looked at that.
MS. GREENBERG: Actually it is not just the community health dimension because I think there are aspects of the provider dimension that also come out more aggregated or whatever way get picked up as health statistics, I mean provider-based surveys, Medicare databases. At least they are used in health statistics.
DR. LUMPKIN: So, I think there maybe needs to be a section in there that discusses two things. One is how this fits in with the NHI and then I think maybe a more specific section on community health dimension.
DR. HUNTER: We need new words. Research to a person who operates an agency in the Federal Government, if it is research it has to go to an IRB. If it is surveillance it doesn't. So, you choose what word you want to use and use the term violating people's privacy if you were to use the term violating people's confidentiality it would freak people out more than just invading their privacy. Maybe we just ought to do a word search and ban all these terms or find some euphemisms.
DR. LUMPKIN: And that is the reason why I used the term "generating new knowledge," because they are not doing research. They are actually doing the work.
DR. HUNTER: Substitute investigation for surveillance, and it isn't quite as narrowly defined as these things.
DR. MC DONALD: Who are going to be the main authors?
DR. LUMPKIN: Anonymous. They are going to have a very strong input into what gets put into this report.
DR. FRIEDMAN: We have talked about a process similar but somewhat different than we did with the interim report and a process where we develop sort of iteratively a series of more and more complete outlines that become more and more detailed and turn into a rough first draft, and we have a rough first or second draft and then hopefully giving it to, hopefully to Susan to then work on developing it into the final well-written report, but I think this time the work group plus Ed and whoever and hopefully perhaps Kim can give that some time as well. Sue would do more up front work than we did with the interim report.
DR. MC DONALD: I wasn't meaning that at all negatively. I think that it is really hard to prescribe how to write something and then you get into it and so part of this maybe you could give it your best shot and we can beat on it.
DR. FRIEDMAN: We know you are going to beat on it.
DR. MC DONALD: He who is willing to write gets a lot of power.
DR. LUMPKIN: Okay, have we about beaten this report to death?
Shall we move on to the NHII document of which we have had a fair bit of discussion about the community health dimension?
As I mentioned there are two approaches that we want to take. One is the short term document and the second is the longer technical document and perhaps there are some issues that we may want to raise as we begin to address developing this short-term document. I think that ultimately the technical document will have a fair number of detailed recommendations, some of them I think by reference referencing other documents of the Committee.
Do you want to take a 5-or-10-minute break?
DR. LUMPKIN: Based upon our little sidebar can you describe what we were talking about?
DR. DEERING: Here is what I think I heard us talking about, that sometime within the next few months we would hope to put out a document that would go certainly to the secretary and new policy makers who are coming in but its tone would be such that it would be very appropriate for the lay audiences of many kinds although it is not directly addressed to as Marjorie puts it the McCall's magazine people and that it would fine tune the interim NHII report but definitely draw in segments, more segments from the 21st century vision report that are particularly appropriate to the broader public as opposed to the first two audiences that Dan described, like certainly some of the same policy makers but certainly not the people in the field, you know not professional statisticians, and that somewhere in the report either in an introduction or in a schematic or somehow it would depict the collection of documents that are going to be produced and their purpose so that this is like the opening. It is the heads up. It is the broad brush. It is the issues. It is the NHII concepts and then it points to the other components yet to come, most of which are already in the pipeline at some stage or another.
Is that what I heard?
DR. STEINDIEL: I think so. Clem is not here. So, I will ask the question. How long?
DR. DEERING: I honestly would love to have a draft for the next full Committee meeting.
DR. STEINDIEL: No, how long do you envision the document to be?
DR. DEERING: We can make it shorter than this.
DR. STEINDIEL: That is what I would think, too.
MS. GREENBERG: Ten pages?
DR. DEERING: That would be pushing it, but certainly short. This is 30.
DR. LUMPKIN: We can take out some of the elements.
MS. GREENBERG: Would you want to keep the scenarios?
DR. LUMPKIN: I think we want to keep the scenarios.
MS. GREENBERG: Those are very strong I think. Do we need a scenario that is more related to health statistics?
DR. DEERING: We can certainly create one. I mean we have got one public health one in there already.
DR. PARRISH: There are some things that can come out. I have a quick comment, okay? That is related to the very last thing we said which was the sort of diagram and description of the various documents and how they fit together. I was thinking that I actually very much liked Jeff's comment earlier about how the health issues are out there. We gather information about those issues to better understand them and then in turn we need a certain infrastructure underneath to support that. We need health statistics, etc., in addition to just something that describes the document. I think some description of that, the context of it and perhaps even a figure or graphic that shows that and then you can actually tie the documents to that. It might be useful as well, an introduction and in fact it could even go in the introduction to both reports.
DR. WEINZMEIR: That would be a nice way to tie them together. That is a good idea.
DR. PARRISH: Jeff spoke so eloquently on it. I think he could probably write it.
DR. WEINZMEIR: That is your punishment for suggesting it.
DR. LUMPKIN: I thought that this document, we have heard some suggestions, broad brush recommendations in the hearings that we may want to incorporate into this document. It is clear to me that people believe that government has a role in bringing about the NHII and I think that should be something that we should state in the document, and I think if we say that, that somewhere within HHS there ought to be someone who clearly has responsibility and the lead and over time the resources to play that governmental role.
Now, I have kind of just jotted three things that I thought were part of the role of government, and we may want to write some letters to some of the folks who testified and sort of bounce this off them, but the three things I came up with were to set standards to support research and to facilitate private sector development.
DR. MC DONALD: Setting standards may be a bit strong. You might want to say --
DR. LUMPKIN: Adopting standards?
DR. MC DONALD: Or something like that.
DR. LUMPKIN: Promote, encourage, facilitate?
MS. GREENBERG: But in some cases set, too. I mean if just promoting them were good enough we wouldn't have needed HIPAA.
PARTICIPANT: We are not setting them in HIPAA.
MS. GREENBERG: Adopting, maybe adopt standards, promote and adopt standards.
DR. LUMPKIN: Adopt, facilitate private sector development and I think the word "adopt" is probably, I mean it is not to develop the standards. It is to identify standards developed by industry consensus process and anoint them.
DR. MC DONALD: You don't have to say that much but --
DR. LUMPKIN: Yes.
PARTICIPANT: There goes the 10 pages. Everything needs a whole lot of words to quality. That is why the documents get so long.
DR. MC DONALD: I think you can find one for encourage standards or facilitate or --
MS. GREENBERG: He said, "Promote and adopt standards" or something like that, "Support private sector development."
DR. LUMPKIN: And support research.
MS. GREENBERG: I would certainly think the first and the third are certainly relevant to the health statistics vision and I think the health statistics vision recognizes that there is a lot of private sector data out there that it would be nice if it could be kind of be used for some of these same purposes, but I don't know, what do you think, Dan about whether they would be slightly different for the health statistics?
You might say, want to say support not just private sector but state and local. It just seems that there might be a somewhat different or if not different, you kind of focus it a little.
DR. STEINDIEL: Facilitate development. Don't put a qualifier on it.
MS. GREENBERG: Whether it is private sector or --
DR. STEINDIEL: Yes.
DR. FRIEDMAN: I think that is good.
MS. GREENBERG: Yeah.
DR. DEERING: Is there a fourth that sort of cuts across this or is it an orange to these apples which would be to serve as a model and a test bed itself in certain areas? We hear so often why doesn't government just do it in some of the areas. Why don't you walk the walk as well as talk the talk, and it is standards and you demonstrate, you play an R&D role? So, I don't know. It is a different order of stuff.
DR. STEINDIEL: John, what do you mean by support research, research in the NHII or research in general in health care?
DR. LUMPKIN: NHII.
DR. STEINDIEL: That would fit in with what Mary Jo is talking about.
DR. LUMPKIN: Some of it may be through a greater commitment to the GCPR project to speed that up. Some of it may be to fund RO1 research that we have heard about through the testimony, making the business case and demonstrating that.
DR. DEERING: I guess I was just thinking of after all the government as the Executive Branch of the government. It has programs and services and to make sure that within the things that you carve out you have given the secretary specific scope to then turn to the agencies and say, "Go forth and do," as opposed to just research, but to actually engage their programs and services fundamentally in these directions.
DR. STEINDIEL: Yes, if we don't want to add a fourth to specifically qualify it, I think we can encompass it in the support research in the promulgation of the NHII or something like that.
DR. LUMPKIN: And perhaps to expand the standards piece and this may be related to research. I don't think so, but part of anointing standards is to identify where there are gaps and then to support the development where there are gaps or to facilitate the development much as a prior administration formed the HIS report, health informatics standards.
MS. GREENBERG: Don't all of these kind of fall under kind of the rubric of the government providing leadership?
DR. LUMPKIN: Yes.
MS. GREENBERG: Because that includes leaders as models. So, it includes what Mary Jo was saying, but it kind of includes all of them.
DR. STEINDIEL: It directly addresses the complaints we had about you have a very nice vision; now where is the leadership, and it confronts the question of whom should have the leadership. I don't know how strongly you want to state who should have the leadership.
MS. GREENBERG: Not that they are the only leaders.
DR. MC DONALD: Historically HCFA definitely, I mean HCFA would not talk to the private sector. It just did its thing and maybe if you can recast it in that image you might create some opposition.
DR. LUMPKIN: But I think it has got to be in the Secretary's office.
MS. GREENBERG: No one is suggesting HCFA.
DR. HUNTER: HCFA doesn't talk to the public sector either.
DR. STEINDIEL: HCFA doesn't even to themselves.
MS. GREENBERG: Part of HCFA is now talking to the industry, the HIPAA part.
DR. MC DONALD: That has been a remarkable development in many ways and if they don't all explode after doing that for a while they might believe that others may want to follow that example, but I think that is something that is someplace in the secretary's office, and I am not sure we want to be specific and say someplace like ASPI(?) or some other place but I think we do want to say somewhere.
DR. DEERING: If you characterize the functions it may implicitly show where it should not be. I mean for example it should not be in the IT division either.
DR. HUNTER: Since I missed it, we are talking about the overall governance of Department of Health?
DR. LUMPKIN: Where the leadership focus for this should be in the secretary's office and given that the new secretary may be looking at restructuring the secretary's office anyway it probably would be hazardous to pick a particular location.
DR. HUNTER: The new secretary might consider restructuring a lot more than just the secretary's office. We may want to be careful to argue for functionality and role and placement rather than assuming that any organizations that might have a role in this are going to stay where they are. ASPI and the ASMB could easily change. The ITCIO function is in ASMB right now and much of it is described in ways that are very much like this and I don't think that is what you would envision this being, somewhere at the department level, and I don't know we can worry about the wording but the secretary's office means specific things right now that it may not mean in 6 months.
MS. GREENBERG: In that regard thinking about specifics would you want to say anything about the Data Council or something like the Data Council? I mean the problem about, I think it resonated with everybody when Don Detmer talked about sort of the designated driver. At the same time there is quite a decentralized approach in this department. I think, a very centralized approach probably wouldn't resonate. So, everyone kind of needs to have ownership rather than just an office at the secretary's level and that may be just principles like that as opposed to saying what the format should be but I mean I think it is important that this not just be a top-down thing.
DR. LUMPKIN: I am not sure whether to mention the Data Council in that. You want somebody responsible, and I just don't get the feeling that the Data Council, I mean it is a very important development and for those of us on the outside who remember the days before the Data Council things are better, but I am not sure that the Data Council is an implementing body.
MS. GREENBERG: No, it isn't. It probably couldn't be. It certainly isn't now.
DR. HUNTER: I think it is actually worth nothing the conversation that was held at the Data Council last week when John was there, and you were probably there. I mean the Data Council is actually a creation of the secretary who will be leaving in a month and something, and it may be worth describing rather than saying, "The Data Council," describing what it is you would want some coordinating group to do to surround the responsible party and not necessarily assuming the Data Council, and it may be something you want to note in the transition thing that you talked about, that the department needs something in the shorter term, but the department needs to have some place for the national committee and others to relate to because it is not obvious that it stays in that structure.
DR. LUMPKIN: In order to facilitate that wherever that designated driver is that would best be supported by a coordinating council with representation from all of the components of HHS.
DR. STEINDIEL: Is it just HHS? I know the Data Council. I am talking about the NHII group from a government point of view.
DR. DEERING: There are lots of examples of interagency coordinating committees that work quite well.
DR. STEINDIEL: Yes, and I think I raised the question because I think it should be addressed in that fashion, and so excuse my ignorance, Veterans Affairs is a separate agency or separate department. So, we would particularly look at as important partners in this DOD, Veterans Affairs, Highway Traffic Safety and Ag. Those are just the ones that sort of roll off the top of my head.
DR. DEERING: Then you have got HUD because we are talking about the determinants of health in the housing communities.
DR. LUMPKIN: So, we may want to go and look at the other federal agencies that have a health component and the importance of coordinating any initiative with these agencies.
DR. DEERING: It may be like the model of the databased patient records that those that have the most direct interest in certain substantive activities can engage to move substantively ahead in a coordinated fashion while others who have sort of an informational requirement could follow along.
DR. HUNTER: There are some models of this. You could refer to the quality committee as an interdepartmental thing where there were some earlier standards.
DR. LUMPKIN: Are there other areas of recommendations we think have come out of the hearings that are mature enough to profit this one?
DR. DEERING: There are recommendations for federal actions. I mean that is what we asked for. We have got a bunch of stuff that sort of says across the board that here is a variety of things that could happen, but the federal action was get off your duff.
MR. BLAIR: We had somebody testify in San Francisco from UCLA. I don't remember the professor's name.
DR. WEINZMEIR: Rick Lowden from UCLA?
MR. BLAIR: Maybe. He was proposing that there be a bunch of --
DR. DEERING: You are thinking of Phil Lee from UCSF.
DR. BLAIR: And I think that we had requested that he provide us with a little bit more information as to how he came to that number, what would make up that. I am not necessarily saying that we want to go forward and take that recommendation forward. I don't know, but it might be helpful to us just to know how he came up with that. It might be useful information for us in understanding the recommendation.
DR. DEERING: He said that he would put it in writing. He did come up with some figures. It was something like 687 million, I happen to remember for the Office of the Secretary. Don't ask me how he got that, and there should be somebody in the Office of the White House. So, there would be some staff on there and all the rest was to the agencies to be supporting specific activities
DR. WEINZMEIR: What he outlined was a beautiful initiative. I mean he gave money to everybody, the White House Council of Health Advisers.
DR. HUNTER: He was doing some pretty broad reorganizing.
DR. DEERING: He was responsible for decentralizing HHS. He can recentralize it.
DR. HUNTER: He was simultaneously wanting the centralized database.
DR. LUMPKIN: We may not want to go into that detail.
DR. HUNTER: Be a little more generic but Ron summarized that stuff pretty nicely. He has the EPA, Transportation and other things all swept together.
DR. LUMPKIN: Any other areas?
DR. STEINDIEL: The interesting thing about $14 billion that Phil Lee threw out was there was another person who presented in the morning at San Francisco who actually threw out something that looked like a similar number in a different way. I think he said like $500 per individual in the United States.
DR. WEINZMEIR: Or $200 to $500 per person and you know, you multiply it out and it comes up in the same realm.
DR. LUMPKIN: So, it is like two people said it; then it must be a valid number, right?
DR. STEINDIEL: We could put a standard deviation on it, not a good standard deviation.
DR. LUMPKIN: Any other areas?
Okay, we have kind of got the pieces I think to begin working on the, for lack of a better term the popular lay person piece which is the short-term document. Long term I think we are going to need to start putting together an outline, and maybe we can think about the kinds of things we want to see in the outline. There was a couple of other things before we move on.
Do we want to describe other dimensions? We had debated this when they first brought it to us. We had them talk about an administrative dimension, and we had talked about a quality dimension which actually could be a piece of the administrative dimension.
MS. GREENBERG: This is a research piece.
DR. DEERING: Someone recommended a research dimension, also., and I think that is very sensitive.
DR. LUMPKIN: Not only is it sensitive, but there is research really in community, and there is research in provider and to some extent, well, it is kind of hard to --
DR. DEERING: Let me ask you something because you have said that 2001 will be the HIPAA shock year and considering that this is the administrative simplification act, is it better or less better for us to pick up on the administrative aspects of this, given the fact that the administrative dimension will be so much in people's faces? Is that a concern at all?
DR. LUMPKIN: It may be. We may not want to go there. That is a good point.
DR. HUNTER: HIPAA to a certain extent defines the administrative branch. We can pick up on in the long-term report which will be a year or s after HIPAA rotation, so from HIPAA shock to HIPAA joy, hopefully.
MS. GREENBERG: But I mean certainly the provider type does go into administrative records. We have to have some acknowledge of that I think. I guess I was never in favor of making a separate administrative dimension.
DR. LUMPKIN: But I think it is important because part of me says that I wanted to do away with dimensions, but they just described how you look at the system in both the information technology and non-information technology meaning of the word but that a provider looks at, but there are, also, things that an administrator looks at that aren't necessarily directly related to the care of the individual or the provider providing care to the healthy individual which is the health of the system or the functioning of the system or the quality of the system for quality improvement, and so you know, the term "dimension" just means how you are looking at the data and how you are looking at the interactions.
So, I mean there is a whole multitude of potential dimensions. It is just whether or not we feel like we want to explore them in a document.
DR. HUNTER: I keep coming back to semantics because I actually would have thought what you meant by the dimension was almost like a component or a department or something when what you really are talking about is like a prism through which you look at the same thing.
So, you may want to think of all these others that we have. We may have to mention that then you may have other things you would describe or perspectives. There is a word smith level coming up, but those words mean something different to me than dimension or it sounds like it is more like an isolated kind of thing.
DR. LUMPKIN: And that was what we wanted to avoid. We had all sorts of views and all sorts of things. We may have even had perspective on the table, but the way the document is written it says that if you are an individual this is what the NHI will do for you and if you are a provider this is what it will do for you, and if you are concerned about community health this is what it will do for you, and we kind of slipped into it a little bit more than we wanted to because we talked about getting information from the community health dimension and we really should be talking about getting information from community health sources.
So, there is some tweaking that we can do when we develop this popular piece that gets away from this actually being something that could be shrink wrapped into really describing this functionality of what this will be. DR. DEERING: I think part of the fine line we were trying to walk was as John said earlier, this is not a database. So, at the same time we don't want to just say that this is a prism through which you are looking at this big national database that we said is not going to be. So, we wanted to emphasize the distributed nature of it, but perspective still gets at it, but perspective still -- one way or the other it implies there is an it.
MS. GREENBERG: Yes, it isn't all the same data.
DR. HUNTER: There are basic different things by looking through a different lens.
I guess I was overlaying the vision report as talking very specifically as being a subset of the community dimension and sort of tending to more lock those things into different more operational components rather than ways of reaching into something.
DR. LUMPKIN: Let us maybe just sort of put that on a shelf for the short-term report and revisit it for the long-term report. I don't hear anybody just sort of gushing out and saying that yes, there is some other particular view or some other particular public that we really want to highlight what this can do for them.
That covers it. So, let us talk about the long term. Are there issues that we want to begin to address in relationship to the more technical final interim next report, and that is to what extent do we want to, would we as this particular Committee and through the Executive Committee and the full Committee task other committees to develop pieces of recommendations for the national health information infrastructure?
For instance, we may want to think about tasking the privacy committee to come up with specific infrastructure issues related to privacy and confidentiality. I think we have got pieces from standards and security that we don't need to task them for, but we could task the quality committee which I think is having some difficulty because they are trying to look at standards for quality, and I think they may be looking in too much detail and maybe need to step back and look at a much higher level view of where the national health information infrastructure can facilitate the quality process and let groups like the quality forum talk about standards of data collection and quality measurement.
Are there other areas that we want to think about looking at other committees, the population committee or the pieces that we want them to look at in relationship to how do we tie in health priorities for the nation?
DR. STEINDIEL: The hearings threw out a lot of things that the population committee could advise us on, the tribal issues disparity. They were thrown out to us as buzz words, but the population committee may be able to put it down into more solid examples of how the NHII can get the data on these issues.
DR. LUMPKIN: I am just going to see if I can refine that because the issue isn't gathering data. It is how we can address the issues through better health information leading to better health.
DR. STEINDIEL: Do you think we should introduce the concept of address and monitor?
DR. HUNTER: Or monitoring address?
DR. STEINDIEL: Or monitoring address, either way because I think what we are losing sight of is the issue of monitoring. We have brought up surveillance a couple of times earlier and when we go out of traditional infectious disease we sometimes talk of surveillance, and we sometimes talk of monitoring, and we may want to introduce that concept in the NHII report.
DR. MC DONALD: Surveillance sounds less big brother than monitoring.
MS. GREENBERG: Oh, you think so?
PARTICIPANT: Things are a little bit different in Indiana and we consider them to be our little brother. So, I have to stand up for them.
DR. MC DONALD: I accept that help.
MS. GREENBERG: I am in the middle here.
DR. LUMPKIN: So, how do we want to, taking that piece -- see you, Jeff. Safe journey, happy holidays.
MS. GREENBERG: They hope not to see you when they get to the airport.
DR. STEINDIEL: And we hope we don't see you back up here in a minute or two.
MS. GREENBERG: This reminds me of one of those meetings where we had one of those discussion sessions we had in Larry Dartmouth's office. What we all agreed needs to happen is next steps. It doesn't sound like other than in some very succinct fashion we will get much into in the short report and as we talk about a longer technical report I think we want to ensure the next steps possibly for different groups of actors, and again I don't know how we are now seeing this in relation to this more technical report, but that certainly was the one thing that everybody told us to spell out, and I think this idea of the scenarios in 1 year and 5 years and --
DR. LUMPKIN: I like that idea.
DR. STEINDIEL: Jeff and I have spoken on this, and we feel that is very important. In the short-term report I agree we don't have a place for it, but the long-term report I think has to address that very, very clearly. There needs to be a very good road map in that.
DR. DEERING: Again, it could well be that the long report, also, becomes a dual entity, that it has got some core substance where maybe it addresses issues on this level and then has more technical or no, that is not the word. It is all more technical but more detailed subsets like on issues related to specific populations, issues related to privacy, issues related to standards.
DR. LUMPKIN: But I am thinking that those, well,I think we will have to work through that because what we will want to do is have the quality committee look at it and the populations and the privacy and look at where the recommendations are coming, and some of those may be higher levels than others, and what works on the 1, 2, 5, 10, 15 are those that are more specific are going to tend to fall into the shorter term and the ones that are less specific and higher level will fall into the longer range perspective.
DR. DEERING: After the fact?
DR. STEINDIEL: Yes, you usually do something very specific the first year, something that is leading to something the fifth year and something wishful the tenth year.
DR. HUNTER: Even in the short report you want to have at least a few steps, I mean, for example, the discussion about the coordinating council to the new administration in terms of that being a very short-term step.
DR. LUMPKIN: Yes.
DR. HUNTER: So, you would have some steps in the popular report.
DR. LUMPKIN: I think the difference, the short report I think we are going to focus in on kind of the popular vision and what government, particularly HHS focus should do and should put into place as soon as possible.
I think the full report should describe not only the roles of government but the roles of other parties.
DR. STEINDIEL: What we could do is set the short report staging so that we want somebody in the department that we can give the long report to that can do something with it.
DR. LUMPKIN: Now, let me see. They are not really sure that they want the long report to have to implement. Wouldn't the best thing then be to not file that report? Of course, we have to think that through.
DR. DEERING: One of the things that I had written down --
DR. LUMPKIN: Or better yet we could tell the secretary if we don't have somebody we are going to give the long report to you.
DR. STEINDIEL: We are going to give the long report to somebody. So, you might as well have somebody appointed.
DR. DEERING: We used to raise money for partnership efforts around the agency that way. We would say that if you don't want to attend any committee meetings you pony up $500,000. If you want to attend committee meetings you only have to pony up $200,000 or something like that. You pay for the privilege of not having to participate actively in the process. Just throw the money at us, and we will go away.
DR. HUNTER: It is hard to get $200,000 out of each individual that way though. You have to find another model for that.
DR. DEERING: These are notes that I made earlier, and I am not sure if or how they fit into one or the other report, but I will throw them in while I am here.
One of the areas that again had come up under recommendations that HHS certainly could do was to begin to examine itself so to speak in terms of unintended barriers within its existing programs and services and take a negative inventory as well as a positive inventory.
DR. STEINDIEL: I think that would be a short report.
DR. DEERING: Okay, short report, and the other was that I think we would need more than 10-page report to do this. The agencies themselves would be encouraged to create a timetable for integrating the vision within their own areas, that without giving them a specific road map on how to get there at least initially they are told to report back after X months. Okay, we have taken a look at this. We think this is how it impacts us, sort of the positive side of the negative and first of all look at what you are doing that is a barrier to this and see if you can justify what needs to be done and then secondly look positively at what you have that could feed into this so that you are actually decentralizing the process of building what your agency does.
DR. STEINDIEL: You could recommend that sort report.
DR. LUMPKIN: I don't know, I see the long because you are going to need to have more details for them to be able to take that and start responding.
DR. HUNTER: Absent any central person or coordinating thing at the agencies it would be hard to run with it. You may want to put it in the short report as an example of the things you would want your named individual on.
DR. DEERING: It could be phrased just in a way to let the agencies who might read this know that there is no intention of scripting in great detail what their required actions are going to be but that they will play a role in creating the final, maybe just a vague allusion to that kind of process.
I am just thinking you want enough in there so that it doesn't, we don't want it to be pablum but on the other hand you don't want a brand new agency head coming in seeing this and saying, "I am going to fight this." We want something in it so that anybody coming in can say, "Okay, I can see that this can be a value added to what I am doing."
DR. LUMPKIN: I don't think I am worried about any incoming agency head seeing this and getting the wrong impression, and fortunately the staff who probably will see it and interpret it to them are the ones we need to write to, and I think that is a very good suggestion.
DR. LUMPKIN: Is there any rumor about who might be secretary of HHS?
DR. LUMPKIN: There are tons of rumors.
MS. GREENBERG: Wilensky.
DR. LUMPKIN: Tommy Thompson.
Do you have something else on your list?
MS. GREENBERG: We were, also, told to set out an agenda for stakeholders somewhere, again, you know, the private sector, what are their responsibilities and what are they already doing that fits into this and what is it natural for them to do?
DR. LUMPKIN: I would think in the full report we would want to have stakeholders, identified stakeholders what their role should be or what we would encourage them to do.
MS. GREENBERG: In the longer term one?
DR. LUMPKIN: Yes.
Anything else on that list? It is a good list. You are on a roll.
MS. GREENBERG: I am on a roll. Just to remind folks of what our original list of appendices had been, do you want to know what we originally thought we might have or is that going to divert us from the roll that we are on?
DR. LUMPKIN: Go for it.
MS. GREENBERG: Some of it we have already incorporated into the existing interim report. There is going to be NCVHS activity today. We talked about somehow talking about what has been accomplished. A glossary was something that we talked about at one point being very helpful and probably for the short report even if it is only a 12-term glossary of key terms, we might want to definitely add that.
MS. GREENBERG: I thought the glossary that was at the PMRI report was very good. So, there may be some terms that aren't in there, but it is very useful.
DR. LUMPKIN: I think we would want to have that in the short report given the --
MS. GREENBERG: No, but we could point to it, I guess.
DR. LUMPKIN: No, but I mean we can incorporate some stuff as the appendix to the short report because given the audience for that it may be very useful to have some glossary in there.
DR. DEERING: When we first started talking a couple of years ago there was only talk of the NCVHS letter to the secretary regarding HIPAA issues. I don't know if the privacy regs will be out by the time we write this. So, I don't know if there is any position of the NCVHS on these issues that you want to --
MS. GREENBERG: That may come out of what you are going to cast the privacy subcommittee to do.
DR. LUMPKIN: Right. That would be in the long report.
DR. DEERING: Certainly a copy of the report on the PMRI standards. We had background on the NHII and that could clearly come out of the very short report unless we just allude to the work of other states, other countries' work and that we are following in a tradition, but at one point I think people had wanted more detail, for example, the Canadian and Australian models where there is really extensive substitute work that has happened, and so that was something that we thought of putting into an appendix.
We had talked about standards and then a list of resources and by the way the web site is actually live, our new web site, but I don't think it is linked to yet and, Marjorie I know you have tried.
DR. LUMPKIN: It is linked to the NCVHS home page.
DR. DEERING: Where is it linked from because if you click on the report all you get is the report.
DR. LUMPKIN: If you go all the way down to the bottom of the page there is a little thing that says, "NHII web site."
DR. DEERING: Oh, I just don't scroll down far enough. Good, we did it. Well, take a look at it. Clem, you had, I think about 4 months ago given us some additional resources. I think my staff added yesterday or the day before, suggestions from other things, add the list of resources on our web site. They should be there.
DR. MC DONALD: Great. I will come up with more.
DR. DEERING: There is another thing we can do in any report which is we can just allude to the web site and that can be our permanent building component.
That is my list.
DR. LUMPKIN: Any other lists? Do we have enough to get going? Do we have any other work to do today?
DR. DEERING: Do you want to talk a little bit about the January hearing just so that everybody can hear that?
DR. LUMPKIN: Yes.
DR. DEERING: I don't have enough copies of this agenda for everybody. I think there are about seven or eight here. I will pass them down each side, and you may have to share a little there. Cynthia and I can share this one. This is still very much a work in process, but we owe Debbie Jackson something final by when she goes home today so she can put it up.
Do you want to go over it, Cynthia? You have been the closest to all this and who they are?
MS. BAUER: Our first privacy panel it looks like we have three confirmed speakers. We have Lee Raney from the Pugh Project.
DR. MC DONALD: Is this the author?
MS. BAUER: The author of that report, and we were trying to get sort of as a point, counterpoint the person from the Institute for Health Freedom, but she is too busy to come. So, we are going to have Paul Berning from the Center for Democracy and Technology and David Brin has agreed to come.
MS. GREENBERG: So, not Susan Blevin?
MS. BAUER: Not Susan Blevin. She said that she will try to submit some written comments.
David Brin was someone that both Dan and John I believe Dan, right? No?
MS. GREENBERG: Gelman had actually --
MS. BAUER: Oh, was it Gelman.
DR. LUMPKIN: I just want him because I have read his book.
MS. BAUER: He is a space physicist and he is, also, a science fiction writer and he wrote a book called The Transparent Society: Will Technology Force Us to Choose between Freedom and Privacy? He has, also, testified before the Senate, I believe.
PARTICIPANT: Spell his last name?
MS. BAUER: B-r-i-n.. He is an independent author.
DR. MC DONALD: What were the trade-offs, again, freedom and privacy?
MS. BAUER: Freedom and privacy, I believe. Will Technology Force Us to Choose? As I understand from reading excerpts of his work, his basic argument is that the usual juxtaposition is that you end up with this group of people who are watched by the watchers, and his scenario that he proposes is that everybody can watch each other within certain limits and those are the checks then upon unwarranted intrusions.
So, he sounds like a very interesting guy. So, panel two is what we are calling stakeholder organizations, and we have confirmed the American Association of Health Plans, the National Consumers League and we have Nancy Lorenzi from Vanderbilt University.
She has been involved, Nancy Lorenzi has been involved in the National Library of Medicine's IAMES(?) projects and she has, also, sort of an on-the-ground operations type person. She is well known for doing a lot of work on organizational and cultural issues in terms of technological change.
The following panel then --
DR. WEINZMEIR: Health associations, and we have Association of State and Territorial Health Organizations, pretty certain that they are going to participate, and we are still trying to pin down the exact person and maybe Alana Knudsen Bursh. I have calls in to her. So, I am pretty certain somebody, and she was calling me back yesterday. So, she may very well be that person and then we do have a confirmation from the Association of County and City Health Officials, someone in the research and development division. I don't know how to pronounce her name.
MS. GREENBERG: Did she actually work at NCHS before?
DR. WEINZMEIR: I don't know, but I spoke with the head of the research and development division there who said that she would be participating and then the Association of Public Health Statistics Information Systems, Dan Al Zangri was going to talk to you. Did Al talk to you in the last day or two? He said that he was going to participate or maybe Delton Atkinson?
DR. FRIEDMAN: He mentioned the possibility of Delton. He is the new executive director.
MS. GREENBERG: Al already came.
DR. WEINZMEIR: But I thought Al had said that even though he talked earlier, clearly at that stage we were looking at the principles and this sort of thing and now we want to look at implementation steps, and he would be sitting with other people at other health organizations. So, there is an additional reason to have them come back again and then right after lunch another panel of other associations. Barbara Starfield wanted to make certain, and, John, I know I talked to you about this. Barbara invited these folks and Tom Burke or Shelly Hearn who is the Executive Director of the Hopkins-Pugh Environmental Consortium will speak and then AMCHIP(?) is going to send someone, too, and they suggested someone who works in public health in Arkansas who is involved in the AMCHIP leadership organization but I haven't pinned that down for certain whether it be he or someone else. Then APHA, these folks --
MS. BAUER: He knows the new president of APHA, Michael Hearn.
DR. WEINZMEIR: We thought we had someone from the Governor's Association, and they called yesterday and said that they are not going to send someone after all. So, that was a disappointment because we wanted them. We are going to have another privacy panel in the afternoon and Dr. Etzioni is going to participate.
MS. BAUER: At this point Etzioni is the only one we have confirmed for the afternoon privacy panel.
DR. WEINZMEIR: He could only come in the afternoon. That is why we have a privacy panel in the morning and one in the afternoon.
DR. LUMPKIN: What about the AMA?
DR. DEERING: We may have the AHA coming. We have an invitation out to the AHA, that guy who I found, but I haven't heard from him. I made a follow-up call yesterday and haven't heard from him, and I know that you said that it was low on your totem pole, but once we began to have some openings it appears that the pharmaceutical industry does have a consortium that is looking at IT issues, and I have actually now exchanged telephone calls with somebody who knows that, and so I just this morning before I came here gave them more details.
DR. MC DONALD: I think that is CDISK(?) is what you are talking about.
DR. DEERING: Is that what it is? I called Pharma.
DR. MC DONALD: I am pretty sure. CDISK is an organization that was first called Messages for Submissions and they do have a large number of pharmacy companies at least giving small amounts of money to it. I know about them and they are connected to HL7, but I think it is C-I-D-S-C, and they came from --
DR. DEERING: C-I-D-S-C?
DR. MC DONALD: Yes, and they came from another organization that has been around for a while, sort of a pharma related, and there might be another one, but I am not sure.
DR. LUMPKIN: Why don't we instead of labeling that as a second privacy panel just have it as an others panel.
DR. WEINZMEIR: The other thing is we need to explicitly have a little segment for public comment. There is a couple of people that we have talked to over the process who don't fit in exactly into any of these but who wanted to speak. There is a woman who is a researcher at the National Rehabilitation Hospital Center for Health and Disability Research.
DR. LUMPKIN: So, if we don't fill out that panel with the feelers we have out, why don't we just leave it open so we can get our public comment in? Otherwise we will be here all --
DR. MC DONALD: I guess maybe I should go to Pharma and make sure because they have different interests about the privacy stuff, and maybe the group I am talking about is too narrow.
DR. DEERING: Mike Goldhammer?
DR. WEINZMEIR: Another person who wanted public comment was from that Intracultural Cancer Council or the Cancer Control Council. There is a couple of people we have kind of collected over time we need to make sure we get on the horn to them at some point in the proceedings but not a whole place on the panel. Etzioni sent us some homework assignment in advance of his talk, the chapter from a book of medical records, big brother versus big bucks.
DR. HUNTER: Everything is put in juxtaposition.
DR. WEINZMEIR: I thought I would hand it out since I --
DR. HUNTER: Which side is he on?
DR. WEINZMEIR: I didn't get through the whole thing. I have been too busy.
MS. GREENBERG: Who is this?
DR. WEINZMEIR: Etzioni. He is the last panel. This is how he sent it.
DR. LUMPKIN: What is the title of the book, do you know?
DR. WEINZMEIR: I think it is The Limits of Privacy. He did mail it to me.
DR. LUMPKIN: We may want to have a few more minutes of discussion about the panel, but I am going to try to catch and earlier flight.
DR. MC DONALD: We are right behind you.
(Thereupon, at 2:30 p.m., the meeting was adjourned.)