[This Transcript is Unedited]




September 22, 2009

Washington Marriott Hotel
1221 22nd Street, NW
Washington, D.C.

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266-8402


DR. STEINWACHS: We have an agenda that we put together around really two major topics and pick up on the report and revisiting health statistics. There is a list of things we might want to do. I figure that this committee is a starting point that we can start talking about some of those next steps. We had three hearings on – data for health reform and we haven’t done anything to try and pull it together. I was going to ask Dale if he might tell us anything about how it has been used in the Department for looking out at that. I talked to Dale briefly if we agree the things that we would like to see come together out of that and to report to the Secretary – maybe Dale can help us on drafting –-

DR. BREEN: What about the timeliness factor on that?

DR. STEINWACHS: I think health reforms still in progress, isn’t it? It might switch from designing health reforms to evaluating health reforms. I think the idea always was that they both had parts that informed policy making as well as evaluation, but I think you are right. It would have to be painted –- but Doug said he could rewrite all that for us –-

DR. SCANLON: From the hearings there were two I think, aspects. One is the content of data and the second one is access to the data. While we could have talked about access in terms of the current health reform effort because over last few months or so certainly being able to do more analysis would be helpful. That has probably passed at this point. The real issue in part is content is first and then maybe access is second because we know both of those are going to be important for the future. With no reform the system doesn’t work well. We should be studying the system to think about reform.

DR. STEINWACHS: The history of the Medicare program at least is every year there is reform under discussion. I think some people have joined us by phone. Who is on the phone with us?

DR. CAIN: This is Virginia Cain from NCHS.

DR. STEINWACHS: Virginia, welcome.

DR. CAIN: Thank you.

DR. STEINWACHS: We have Ed here to help you. Anyone else on the phone? It is great to have you with us. If time permits we were going to try and talk about some other potential opportunities and one of them we bounced around a couple of times is whether we should be doing something with HIPAA since HIPAA is sort of the domain of the overall committee and particularly regarding research.

MS. GREENBERG: Did someone just join us?

MS. JAMISON: Hi, this is Missy Jamison from NCHS.

DR. STEINWACHS: Missy, great to have you with us.

MS. JAMISON: I am calling from LA. Anyway, I am on the line.

DR. STEINWACHS: Is it nice at the beach in LA? I want you to know that Ed is here.

MS. JAMISON: I am at Wilshire and Figueroa and I don’t know how far that is from the beach.

DR. STEINWACHS: I was sure you would be at Hollywood and Vine if you weren’t on the beach. Judith has joined us.

DR. WARREN: I figured since I caused a stir, I might want to show up today.

DR. STEINWACHS: Why don’t we start off with a follow on to your summary of an excellent report and next steps. At least for me I thought it might be useful just to at least start off with that list of ideas that you put forward as next steps.

MS. GREENBERG: I think I was supposed to send the two of you an email and I’m not sure I did. I will send you a virtual email here. Debbie and I had a teleconference with Dan and Gib last week, just going over their presentation and what the plans for this meeting. You know how actually doing something like that can kind of focus one and I realized that and I said I would send follow up with you, but I am thinking now that I didn’t. I realized that this is September and we are having our 60th anniversary symposium and celebration in June 2010, that if we are going to try to follow up on some of this — and it doesn’t all have to be done by then — but if we really want to have something much more than this preliminary report to show for ourselves and to put out there at that time we need to get going on it. Do I sound like Harry?

There is a potential of using the days around our November full committee meeting for Populations Subcommittee meeting because Standards has elected to meet in December and Quality is meeting next month and privately as a last dibs and just has done a report. I just wanted to share that with you. I don’t know about everybody’s availability but it would allow us somewhat less painfully than our separate time to actually get one hearing, if you want to do something like this, under your belt before the end of the calendar year.

We also asked Gib and Dan if they want to confirm that they are willing to continue with us in this quest and they said they were. That is just a little background.

DR. STEINWACHS: You filled in all the key missing pieces. Very good, Marjorie. Did someone join us on the phone?

MS. GRANTHON: This is Miryam, with Leslie from Oakland(?).

DR. STEINWACHS: Miryam, Leslie, great to have you with us. I think we were trying to start at three thirty. We usually don’t start exactly on time but we maybe did better this time.

MS. PAISANO: This is Edna Paisano from IHS.

DR. STEINWACHS: Edna, great to have you with us. Thank you for joining us. We are going to talk about suggestions that came from Dan and Gib out of the initial report on looking at key recommendations and where we have come from since 2002 in the Vision for Health Statistics in the 21st Century. We had a very good session at the committee as a whole.

I think Marjorie had laid out the challenge. I am now first looking at Gib and Dan about if we were to pick one or two things, at least one, we might do something about and you mentioned a number of things along the line of hearings. What might you suggest for us and then we can start a discussion here since I can see that Marjorie has in mind a very nice next step deliverable along with this going into the celebration in June.

MS. GREENBERG: I didn’t mean to be pushy.

DR. STEINWACHS: If you are not pushy you won’t get anything. Dan, Gib, do you want to -–

MR. PARRISH: It is a few months from now.

DR. STEINWACHS: We work very efficiently.

MS. GREENBERG: With a lot of other people doing the work.

DR. STEINWACHS: You weren’t supposed to say that, Marjorie. I can see Gib latched on to that immediately.

DR. WARREN: Just about 60 days.

DR. STEINWACHS: We have been known to actually be able to provide you with some help. I was mainly thinking about we would work out the work however it needed to be. Is there a next step that to you that is compelling as you think about something we might do leading into the celebration?

DR. MIDDLETON: What is the product? I guess I am confused about the conversation 60 days to produce what?

MS. GREENBERG: The proposal is to have now some focused hearings or workshops or interchanges, however you want to design them, to pursue some of these issues that were identified in this Phase I that would then lead to a revised vision for the 21st Vision for Health Statistics. What we have now is a background report to the committee, which talked about the progress that has been made, gaps, opportunities, issues, but it’s not a new Vision report and it’s not that we are going to send to anybody although – I mean like to the Secretary or something that is going to be voted here or anything. I think we will post it with their presentations on the minutes and all that. I would suggest that it also be sent to the key informants. Particularly it would be nice to be able to say what the next steps are when we send it to the key informants who gave a lot -– these were really busy people who gave valuable time. I think that would be a nice thing to do.

The idea would be to then maybe to have a draft, updated Vision by June 2010. If you are going to have a series of several hearings or whatever I was saying that the November timeframe is open to the Populations Subcommittee.

DR. MIDDLETON: Although that is so short I think a lot of people will be so busy and scheduled.

MS. GREENBERG: Can it be used? That is the question.

DR. SCANLON: This may be too narrow a perspective but based on what I have now. I would start where we have these – we boil this down into three recommendations. The recommendation one to me is kind of the key in terms of improved strategies by adding data to lead certain objectives. Part of that includes – I could subsume two into that as well, which is data have to be adequate in a lot of different dimensions.

Then how to go to your suggestion about how do we take advantage of HIT revolution what’s going on out here. Generally when you talk about in your next steps, how can EHRs and PHRs and how they are doing in technology improve health statistics. Something like that sort of leaned into this and that is why we may want to have a hearing to make it that more concrete.

The third step in this term paper would be we don’t have any action plan. We don’t have an investment in developing an action plan. There is a resource issue here that we are not funding the strategy at all. That to me in some respects is kind of where we are today and it’s not so much a vision because it is very temporal, but it is saying there is a vision but if we don’t move we are not going to ever realize the vision. We’re not going to get to the point where we can really take advantage of this opportunity we have. If Walter were here I would want to debate him about if it has been true in the past that there has been this length of time that it takes to revise a claim. It is not acceptable for the future.

PARTICIPANT: It is speeding up. Is that what you want to hear?

DR. SCANLON: It’s got to speed up a lot. The historical trend is that if you don’t jigger with it we are going to spend a hundred percent of GDP on healthcare in 70 years or so, a hundred percent. We are in a situation where change is necessary. There is a sentiment that exists today that we really do have to do things dramatically different. I think ours sort of reflects a bit of that. Again, it is an opportunity that could be wasted.

DR. GREEN: What would the hearing be about?

DR. SCANLON: My thoughts and I am certainly interested in other alternative perspectives is it is about how do we make this linkage between EHRs and PHRs in improved healthcare systems? It is a little bit following up the workshop that you had in 2007 but now in kind of maybe with the advantage of two years and with the idea that there is this investment of tens of billions of dollars going on and there is more potential that we can realize.

I don’t know exactly how to go about this. One thought would be what are the people in the integrated systems do in terms of taking advantage of their HER? We talked about it in the full session about this as a management issue. What do they do in terms of taking advantage of electronic data to improve management from a variety of different perspectives and then how do you take that back from a societal perspectives?

DR. MIDDLETON: I can address that question and raise the thought they had in mind. On the one hand, Bill, certainly in a large IDM like Partners Healthcare and I am sure Kaiser and many others obviously and similarly we exploit the record data at the individual doctor/patient encounter, individual patient level, et cetera, and use in a wide variety of ways both for reporting where those data are relevant to core measures or national priorities or JCHAO or what have you, but also increasingly using it to do two other things.

One is create research repositories where the data is scrubbed and cleaned up in a lot of ways and become extraordinarily valuable resource, but also for prediction. That is, to use large datasets to basically survey the data for analyses of unexpected or untoward or other aberrations or deviations from expectations. This is extremely interesting in terms of discovery.

Let me back up 10,000 feet for a second. One of the things a quality committee has to its credit or to its advantage is that we can sort of tack on meaningful measures to meaningful use. It almost sounds like a marketing campaign. We have now the meaningful use measures, I can’t remember whatever it was called, hearings committee in October and I wonder what population health can actually hook its cart to a star and find out – sort of latch on to some of the national priorities in one form or another and I think about two in particular.

One is prediction in risk modeling and all that kind of stuff because increasingly it is going to be relevant not only the traditional surveillance way but in clinical ways. Secondly is the ascertainment or determination of value. As we move into whatever global bundled payment or whatever form of health reform, we might think about just at that level. What does population health or health information have to know to support healthcare reform and then the subtext is risk, prediction, analysis, value, and then there is a cart we can ride all the way. Does that make sense?

DR. WARREN: What will give you the wheels to the cart? What I see in this is you need to have the data to come up with your metrics. That is what standards provide for you. Standards are going to be able to tell you what you can move from system to another, much like the problem that Garland found, is that not all public health departments use the standards that apply to EHRs. They are not able to give the data in the way that EHRs can export provide you can have an EHR to begin with.

If we start linking up the entire longitudinal system of let’s see what is there and I can tell you that standards development acceptance is accelerating because money is now exchanging hands or form is in there so it’s not going to take all the time that Walter was talking about because I can already see organizations speeding up their cycle. Right now in the adoption and approval the biggest place where we don’t get standards’ approval is out of the Federal Government because of final rulemaking requirements of OMB and some of those and so we need to find ways to kind of lobby them there and then get it into the quality. Make sure that then the quality metrics are then brought up into the statistics so that you can look at. We really are at this interesting point that if we can ever align all of these different initiatives we could really move places. That probably wouldn’t take more than one or two like pick a quality metric and start seeing how it plays out.

DR. SCANLON: That also I guess raises the issue of whether this should be thinking about this as a Population Subcommittee report or a Committee report that brings in the standards dimension, brings in the quality and the measurement dimension and also brings in the privacy dimension. They said in the other room that they really do interplay here and they are really going to affect very strongly kind of what we are going to be able to accomplish.

DR. SONDIK: I think it is important to – this is only going to be one hearing? The first? But as a first hearing I think I would focus on inadequacy of the data or potential for the future, which I think could then hit all that you have said. I have a concern. If the hearing focuses on EHRs and PHRs I think it is putting an emphasis on the how but it’s how to do what and just look at what Blackford said. You just talked about uses.

I think it is important I think to get the uses, current uses, potential future uses out on the table first to sort of drive the agenda not like we know all the uses that this will have down the line. I guess what I was trying to say in the other room and that it is the use of the information making it better, the improvement.

Well what are we talking about improvement? What are the uses for improved data? What will we be able to do and then have people present, link that to the kinds of advances that needs to take place. Those could be technical advances or they could also be organizational advances. I think the organization of all of this within the Department and in and out of the Department I suppose is very important.

DR. GREEN: Ed just said more eloquently what I want to direct attention to is about getting to the what first step. I would like to build off of that and say I am also interested in learning more from the people at the table here and working this territory. The liaisons from the other federal agencies and that conversation we had when we just ran the table, I found that to be helpful as I heard the other perspectives of people that from the Population Subcommittee was talking to these guys during the summer and everything and I had the sense that we need to mine the committee itself and the committee liaisons to some extent. The point that was really dear to me as about ten minutes after two or so — the notions of what is available in the Department of Labor and Department of Agriculture and Environment and elsewhere.

I think it is a mistake to just skip right over that to start looking at EHRs and PHRs as the sources of data for getting to the what is to be improved. Sixty days from now structuring the hearing. I don’t know. I am just a little befuddled about thinking about how we pull that all together and do that but maybe you are not as befuddled as I am about this. I do want to make a plea for learning from the people that are in our liaison agencies and are working this territory and know an awful lot about what we do have now to define that gap between what are the insufficiencies and all it gets were the insufficiencies and the possibilities.

You used some other word, but that would be a great piece of progress in my view if we could get there and if we sat our table together for the whole committee not just the subcommittee and everyone’s nodding their heads saying that’s what we are going to do. I think that would be –-

DR. HORNBROOK: Following up on this stream of logic it seems to me that if you are going to talk about uses you would want to spend your statistics dollar in ways that generate the highest return on investment in terms of improvements in health. Having said that I would say you want to measure the mutable variables that will generate the largest qualities, tested life years per dollar and so you are going to look at what changes in health variables, self determinants can we make that we should be measuring because they are going to produce better community health. Obviously we ought to measure smoking status. We ought to make it darn sure we are measuring it well. We ought to measure other kinds of behavioral risks that end up with people getting years and years turned off their life because they died early.

We ought to look at things that create tremendous loss of quality of life in sense of function, mobility loss, and cognitive losses and then you end up of course not paying attention to the things that happened in last years of life because we measured those out the yin yang right now and there is no possible way we can change the life year adjusted by maybe a set of days. You look at some of the advancement of cancer treatments. We are paying a hundred thousand dollars for a day, a week or two weeks of extra life on average. We have the whole system turned upside down. Here is a watershed way to turn it around.

MR. HITCHCOCK: Just a couple of little very brief thoughts. One of them is, are we content really to see things evolve into this brave new world. Are we interested in observing and measuring and keeping track of how things are going? Are we interested in following the progress of the EHR adoption across the country among various offices, both personal health and population health? Do we want to keep track of those and that sort of thing?

The other thing I am glad to hear that the social determinants of health that I talked about at a few meetings back is starting to reemerge as a topic we might pay some attention to. And again I would say that if you really want to look at quality and health, it takes more than a medical model to achieve this. There are a lot of other things that you looked at as well.

DR. FRIEDMAN: There is one issue that was touched upon during the discussion and then Ed mentioned and that was also dealt with fairly extensively in that 2002 report that is sort of an uncomfortable issue. When Gib and Ed Hunter and I wrote that 2002 report there was some I think discomfort with its reception because of the particular issue, which is the organizational issues around health statistics and around the entire as it were health statistics enterprise. That is the real issue because you have –-

DR. BREEN: Spell it out a bit please?

DR. FRIEDMAN: Well, we have if one construes health statistics narrowly, very narrowly as data systems that generate population health level measurements that are within the purview of CDC and state health departments — now that is a really narrow definition of health statistics — but if you construe it that narrowly there are two to three dozen different systems, many of which are minimally coordinated either, I can say this because I don’t work for either state government or CDC, either at CDC or at the state level. This notion of this very hackney notion of silos is truly in a lot of ways is just as true today certainly on the back end in terms of the data collection side as it was 20, 30 years ago.

Certainly when you broaden the definition of health statistics you think of population health much more broadly, as we all know we need to think of it, it is an even more severe problem. I don’t know what the committee wants to or feels comfortable dealing with or not dealing with but that is an issue that is not going to go away and it certainly isn’t getting any better and it is just a huge problem.

DR. GREEN: You painted another letter on your list of next steps. Did you just do that?

DR. FRIEDMAN: I did, Larry, and partially it is because when we did that 2002 report we dealt with this issue. I am trying to think of a nice euphemistic way of putting it and I am having difficulty.

MS. GREENBERG: The organization issue.

DR. FRIEDMAN: It was not the time that anybody wanted to discuss, deal with the organizational issues.

MS. GREENBERG: Jim Scanlon just directly said these recommendations are dead on arrival and they were. I’m not saying that he agreed or disagreed with them but he was at the Department level and that was his perception.

DR. BREEN: I’m outside of CDC, but the person who was just chosen, appointed as director of CDC -– the data and public health made them — who really seems to view a system whereby you use data to monitor policies, to improve policies, to make public health better. I think that is kind of a model that we would like to see here where the data are used for practical purpose and then they are used to monitor and figure out ways to improve what we are doing and that is exactly the kind of person we have at the head of CDC right now.

MR. HITCHCOCK: Can I add just something very short? One of your slides you talked about the shamefully low level of funding and I think it goes back to the inability of the people in policy making, managing method positions to use the current crop of statistics to adequately manage a lot of programs that we have now or will have.

DR. MIDDLETON: This is the kind of a throw that I wanted to continue too. In a way I think going back to the sort of where does the -– health reform. What do we need to know, what do we need to measure, what are the data that is going to enable us to tell if health reform is working or not. At some level we know it is going to be more admin data and more clinical data combining case-based reimbursement programs like Prometheus or others in bundles of global or whatever.

This is kind of a new zone for NCVHS, which is as I understand it from my short tenure, traditionally in the population and maybe a little bit in clinical and private securities and standards and all the rest of it, but what do we need to say about the data requirements for healthcare reform? Are there financial data that even might be under our purview in this regard? Are there risk data as I was alluding to before? Thus I have renamed the NVCHS to be the NCVHFITS for financial and IT -– as well as vital health statistics.

DR. SONDIK: One thing I think you left out in that and you keep talking about healthcare reform because when last I looked it was still health reform. I think it is important because –- I know Tom Frieden in his discussion of this constantly talks about prevention and of course from a CDC point of view they want to make sure, we I should say I guess, we want to make sure that this continues to be on the table.

It is tough when we are dealing with the nuts and bolts of insurance, of who is insured. But it comes back to the point that Mark was saying before about how do we even measure health – I think we will agree that the functioning is particularly important. The problem is we don’t really understand the relationship between functioning and the other variables –- CDD, CA, diabetes and so forth. That is very tough to make that mapping. That gets us into QALYS, DALYS and so forth, right.

I want to come back to the organization point. I think we could at this hearing -– is this a hearing?

MS. GREENBERG: We call it a hear shop I think.

MR. HITCHCOCK: Remember we got some advice from a legal counsel so we probably shouldn’t call these meetings hearings.

DR. SONDIK: A hear shop and a see shop I suppose, and a speak shop or whatever. I could see somebody commissioning the papers for someone to talk about the inadequacies and the adequacies for that matter of health data as a function of organization. I think that is a very practical thing that somebody from the outside could look at and say why are there inadequacies? Is it because we don’t see clearly? That is ridiculous. We do see, but if they are inadequate there must be something. You are looking at me like I am crazy. But there are some things that is maintaining. There is something that has prevented us from adequately filling the need. So what is it? Well, why don’t we have adequate data at the state level?

There are people who may help to answer that. At least they can pose hypotheses, but I do think and I’m not just trying to be a rabble-rouser here –.

DR. STEINWACHS: We do need rabble rousers here.

DR. SONDIK: — I do think organization is an important point and I think Jim was right at the time because there was just no sense of wanting to change things. But today there is incredible emphasis on information, on data. I think this tends to be a little positive, too positive perhaps, but I think that this could overwhelm the general sense of organizations to not change because I think there is a sense that having this information is really value added for the CDC. It is value added for the NIH. It is value added for HRSA. It is certainly value added for ASPE and SAMHSA and so forth to be able to have a more of this information.

And for the first time, I don’t know if it was discussed early today, but we have to set a leadership in the Department — people who are in the leadership position. There is a focus on data that I don’t recall in all my years in the Department, but a substantive focus on data from Tom Frieden, who constantly talks about it.

MS. GREENBERG: And reads our reports.

DR. BREEN: And knows how to use it.

DR. SONDIK: To the potential ASPE, very well known health economist, to the woman who is the ASPR, Nicole Lurie. Do you know what PR is? Preparedness and Response. To the ASH, Assistant Secretary for Health who is Howard Coe who is very much -– he is from Harvard, right, very much interested in clinical policy, the use of information.

DR. BREEN: Who single handedly created a big decline in smoking in Massachusetts. He was the guy that pulled that off.

DR. SONDIK: And just one more point, the emphasis on healthy people, very strong healthy people emphasis. It was about to die. I would say two years ago there was really question about whether it would be linked between the administrations and there were people who said well 437 objectives is too many. Ten will do and now they are up to an unpalatable number and trying to figure out how to deal with that but there is very strong emphasis on it. I think the time is right. I can’t imagine this time happening again.

DR. SCANLON: I will agree with you. I think one of our issues is how many hearings we are going to be able to have. What is it going to be if we are going to be capable of doing, if we are going to produce this report? There is no question that we need to start out with in some respects what the needs are. But I think we also should put on the table some things that we may be can take advantage of. One is the activities of the Board of Scientific Counselors for NCHS because in some ways that I think what they have been doing over the years is looking at the programs and saying what is missing? How can we improve?

DR. SONDIK: Who did you say that?

DR. SCANLON: The Board of Scientific Counselors. In some respects, you have a resource there that very quickly say, gee, we are missing sort of all of this. The quality subcommittee had a hearing two or three years ago about administrative and clinical data, talking again sort of about how the two can complement one another and how if you don’t have the ability to have both of them, you are missing some of the key information that you need.

MS. GREENBERG: I think Dan testified at that hearing. They were talking about denominators.

DR. SCANLON: I think this was more about trying to enrich the data on the individual. I remember particularly risk adjustment. We want to take advantage of what we have particularly if we are going to be constrained in terms of hearings. That is the key here. It is kind of like we have to maybe have an idea work plan and then adjust it to the reality of the budget.

DR. MIDDLETON: One thought maybe Bill, adding on I think some of the management and sort of architectural stuff that has been alluded to, I think while we see the pressure on the data and information and from all the reasons and causes we have been describing, is it appropriate for the NCVHS to include in this set of hearings and deliberation which result in the report, some consideration of what is actually happening from the information technology and architectural point of view? Certainly every other industry is centralizing IT, aggregating massive amounts of data and now the CTO in the Department or in the White House or whatever.


DR. MIDDLETON: Can we get some of these guys who don’t mind thinking about large-scale information integration, go beyond the consolidated healthcare informatics prior federal perspective on standardization and actually think about broad-based federal information aggregation and what does that look like?

MS. GREENBERG: Then let our Privacy Subcommittee go at it.

MR. HITCHCOCK: We have data.gov is this sort of example of –-

DR. MIDDLETON: data.gov doesn’t actually do even virtual aggregation does it of population of health statistics?

MR. HITCHCOCK: It is supposed to be heading in that direction.

DR. MIDDLETON: The second point of this just real quick, is that sometimes technology architectures themselves drive management change. Everyone says it should be the other way around but it’s not.

DR. BREEN: What would that hearing be on?

DR. MIDDLETON: Large-scale information integration projects learn from – gosh, I can’t think of a couple of good examples. What would be some good examples?

DR. SONDIK: data.gov. Just kidding.

DR. BREEN: Would you want bring people in from outside the health industry to talk about their experiences or would you want people who are high level in to talk about what they are doing?

DR. MIDDLETON: Here is the criterion. Good question. I would love to know about projects where they aggregate more than a hundred million records on anything.

DR. BREEN: Confidential. People might come at them and grab.

DR. WARREN: Is there an IT and they don’t want anybody to know about it — from the Federal Reserve perspective, not from banks.

MR. PARRISH: The things that immediately come to my mind in terms of what you are saying is the Census Bureau, which deals in very large amounts of data and in fact they have a tool they call Data Ferret. Some of you may be familiar with that, which was an attempt to work on the last 10 years or so. Basically actually synthesize data from different datasets, survey and some vital records data to return aggregated data.

DR. WARREN: But those guys start with the same set of questions. The people we need to hear from is Walmart. If you want to go for an information architecture that has hundreds of thousands of data structures out there and data points -– they can already start predicting where the hurricanes are and make sure that the right food and the right equipment are sitting in trucks just outside of the hurricane thing to be right there after the hurricane passes.

PARTICIPANT: They ship the trucks directly -–

DR. WARREN: Those are the people we need to hear from. They know what is going on in China. They know what is going in the US.

DR. MIDDLETON: Another one might be the credit houses, Equifax or those guys, massive amounts of data, some analytics at least – just speaks vast amounts of data aggregated, et cetera.

DR. STEINWACHS: Do they could help us with our health score as well as the credit score?

DR. WARREN: Yes. They are smart. There is another company and help me remember – it is FedEx or UPS — but they are getting into a different market sector but they are still using their same model of the hub sector – What they are doing is they have partnered now with Dell computers. If you have a Dell computer that needs to be fixed, you take it to your FedEx or UPS story, and I can’t remember which one it is, and they hire the guys that actually fix your computer and charge back to Dell. It stays in the area and it goes back out to you. It is a very interesting kind of information structure that they are putting together.

MS. GREENBERG: I don’t want to dampen this but I think the suggestion that like having Tom Park -– someone like that is a very good one. I am a little nervous, I don’t know about nervous, but a little skeptical about bringing in Federal Express and the Weather Service and all of that to blue sky about all of this and actually getting anywhere in the next nine months. I would rather have somebody like Park, who I am assuming knows this -– who the big innovators are in the IT world and the responsibility to try to apply that to at least the Department of Health and Human Services, because there is a lot of translation between what you can do and what they are doing in the Weather Service and what we should be doing.

It is in the short term. One option is not to have anything by it next June so I don’t want that to be an artificial deadline. All of this stuff and the definitions of meaningful use, they are already know what they are for 2011. They will be decided for 2015 before we know it and they won’t be very robust for population health if we don’t get something on the table in the next nine months.

DR. STEINWACHS: It seems to me that infrastructure issue will be fun to explore but we might be able to do it in a half day as trying to think of something to take. We got several key bits. One certainly is what are the prime uses and Mark has talked to it and so and so. One is focusing on where do you make these investments? There is the measurement issue that goes in that and then there is how would you get all this data together in a way that you could use it. There is a Walmart example and the Department here. The other is – I remember Jim Studnicki and some others. He used to be at the University of Florida. He is now someplace else. He got into at Florida public health data warehousing. At the county level to bring every dataset that you could find together. I think you could do in an afternoon sort of we say well what is a vision?

DR. MIDDLETON: An alternate approach to one who had implemented is to get some of the big players. Get IBM to come in and talk about the latest and greatest, largest scale, whatever they have or somebody those times.

DR. BREEN: One of the things that I am struggling with as I am listening to this conversation is that the way our society works, the way our country works, and that is we have business out there innovating and doing things and moving quickly, and hiring people and firing people and doing things in ways we just don’t see the government getting things done.

It is theoretically possible to do those things in the government but then we do have these checks and balances and then we do have Congress representing very different perspectives of people. I think that has been coming out in the last few months of the healthcare reform discussion, which I am sure people have been following at least in the newspapers if not even more closely than that. It just makes me wonder whether – should we be going to the free enterprise system? Should we be going to business for models that we want to bring into the government? Is there utility in doing that? I’m not sure. I am struggling with that but I want to raise that question.

DR. SCANLON: I think we need to make a link to the healthcare sector because my perspective is that the healthcare sector doesn’t want to change. They have doing quite well thank you. They would love to continue to do so and that actually the transfer of information is a threat to where they are going to be in the future. You hear about individual physicians talking about all this IT stuff. It is too hard and my perspective is when you apply to medical school you said you were the best and the brightest should be able to handle.

You described the fact that Kaiser brought in their EHR. You had a cohort retire because they don’t really want to be part of their sort of daily activities. In other markets the demand side demands these kinds of things. The consumer says we’re not going to accept a product. You don’t go into many stores where they say we don’t take credit cards or we are going to take a credit card and we’re going to have to go and make a long distance card and see if it will be approved. Those kinds of things — that is history. It is the consumer that has changed things. The consumer isn’t here yet in terms of healthcare in saying I will not see somebody who doesn’t have an electronic health record because I don’t trust the paper that there is going to be enough follow through or I don’t trust the prescribing without some kind of support to check for various things.

That is a part of what we have. We can talk about what is feasible and the banking industry and some of the other examples. They have shown what IT can do but now we have to make sure that people understand it can also be done in healthcare.

DR. WARREN: One of the things that struck me on meaningful use hearings was when Blumenthal asked the question –- well, actually he introduced himself first then he said you have to understand I was a physician in Boston who was drug kicking and screaming to use an EHR in my practice. And now he can’t figure out what he would do if he didn’t the data available. That is the change that we need too.

DR. FRIEDMAN: Bill mentioned in X number of years we were going to be devoted one hundred percent of our GDP to healthcare. There are obviously as everybody on the table knows, there are countries where that is not true and where they have adopted a very different approach not only to healthcare costs but also part of the slow down from that is to how they manage some of these issues organizationally where the attitude is much more we don’t have the resources to waste in terms of putting together our data. I think there would be something to be learned from those countries organizationally and from hearing what some of those folks have been doing. For example and Marjorie I’m not suggesting that we bring folks in but –- they have implemented a very logical information model, a data dictionary. It has been built. It has been expanded upon.

MS. GREENBERG: It’s not American.

DR. FRIEDMAN: Well, I know it’s not. There is a huge amount that one can learn from the Australian Institute of Health and how they have dealt with exactly the same issues in terms of diversity of data sources.

MS. GREENBERG: And they actually believe that when there are international classifications is approved by the World Health Assembly that you should try to use it.

DR. FRIEDMAN: Secondary use of service and do it where they bring together a huge array of data, everything from clinical data to cancer registry data, which among other things are used essentially for practice measurement and quality measurement on practices and the NHS trusts. It’s not as if the data they are dealing with are particularly different. They are really not at this point, but their attitude towards dealing with them organizationally is very different. And even in Canada –


DR. FRIEDMAN: That is true. Well Infoway and even at some of the provincial levels of Quebec or as they say the Nation of Quebec, when their government was essentially trying to reset their surveillance in public health data and very pleased to say that what they used as essentially the framework for that was that model for the 2002 report because they wanted to be sure that they could have incorporated as many different data perspectives as possible. This is for going on but this is a way for saying that I think if the committee does –

MS. GREENBERG: That is exciting. That is good information.

DR. FRIEDMAN: And they translate into French. If the committee does decide to move partially in terms of organizational issues around health statistics and how to deal with it, it would be worth looking into and some way another hearing from two or three of these other countries.

DR. GREEN: I am hearing something approaching consensus of what I would call has actually been informal environmental assessment. We have been seeing from multiple directions that we can identify environmental conditions under which envisioning new health statistics seems to be a propitious moment – dissent to that. I hadn’t heard people say this is a terrible time to bring this up. It has been actually the reverse of that and with some people documenting recent change that is directional as a vector seems to be moving in a particular direction that would support this.

I have another question about the environment. I remain confused with our relationship to the HIT policy committee. This committee. Not just the subcommittee, but the NCVHS overall. What I am believing is the following and this is probably – I just don’t know how much of this is wrong but I am sure some of it has to be wrong. That it seems to me that we are actually –- I wasn’t here in ’95- ’96, but it seems to me as I read the track record of NCVHS and the reports and the work that has been done that in the mid-90s this committee envisioned the National Health Information Network.

MS. GREENBERG: The late 90s, early –

DR. GREEN: It took about 15 years but now that’s not a crazy idea anymore.

MS. GREENBERG: It was 2001, that they recommended in their report, it is recommended in your report a national coordinator for health information technology.

DR. WARREN: The functional specifications were in 2005 I think.

DR. GREEN: It seems to me and this is likely to offend somebody. I don’t know who. But it seems to me we don’t have to do that anymore.

MS. GREENBERG: What do you mean?

DR. WARREN: Keep on going.

DR. GREEN: It seems to me that fresh legs and fresh troops have arrived where accountability at an ONC is supposed to do implementation of this stuff and is looking at issues and every time we get a report from them we have a conversation among ourselves about where we overlap and where we don’t overlap and who is going to do what and we got have communications back and forth.

I want to test the waters here. Isn’t another reason why this is a good conversation to have now is that we actually could generate across the entire NCVHS considerable interest in the new health statistics at this point in time? Couldn’t this in a way be a repeat? Isn’t it a chance to sort of envision the new health statistics the way the committee once upon a time sort of envision that there would be a national information network?

And I will say okay it is going to happen sooner or later, somewhere or another, but you know that was a means. Get back to the what that we are supposed to – I find this compelling personally that it is worth coming to NCVHS for if we can wrap our arms around this but I don’t think this is a small thing. I don’t think it is just a population thing. I think this is one of those things that it seems to me the environment might be welcoming for the whole committee to actually be brought into this.

DR. MIDDLETON: Particularly if you say it enables healthcare reform.

DR. SCANLON: I think that the whole committee does need to be involved in this and in some respects that is part of what our strength is. We’re not just Population Subcommittee, which might be perceived as this research focus. We are really the committee that involves privacy as well as standards. I think that this revolution that we are talking about is combination of clinical, administrative, and in some respects traditional survey data and all sort of somehow brought together to be able to address the needs that we have.

I thought you were going to a different place when you were talking about the policy committee, which is that we may sort of both talk about the same thing but there is value to different perspectives. The issue is our developing what we think is the right message, an important message to end and this is an area where I think there has been sciences that we have an important topic and secondly and here to complete it. It is the whole committee – we need to involve the privacy of people as well because it is going to cut across all three. We don’t want to develop something in isolation and bring it into the full committee and have incredible strife.

MS. GREENBERG: How about I’ll throw out a proposal that – the day before the full committee is supposed to be meeting we could have a third committee board or retreat or something.

DR. WARREN: A lot of us are going to be traveling from San Francisco to DC on that day.

We will be on a plane all day.

MS. GREENBERG: We might hear interviews half a day. We could certainly use the afternoon. Although I think that meeting is already what Thursday and Friday?

DR. WARREN: Yes, but it ends Friday at noon.

MS. GREENBERG: We could certainly use other people who are willing to stay the rest of the day on Friday. We could certainly use that afternoon and we don’t really have an agenda yet I don’t think. I don’t know of any major action that might be known. We are not going to be – standards when we’re not even meeting. There might be something from quality but we could use a fair amount of time and then bring in a few additional people as opposed to a workshop where you are bringing in a lot of people since it is only 60 days from now.

DR. GREEN: Let me be really naïve. If I heard you right you said we don’t really have an agenda for the NCVHS meeting in November. Why can’t the meeting be this?

MS. GREENBERG: A fair amount of it could be.

DR. WARREN: There may be some business items that we have to wrap up.

MS. GREENBERG: We can’t completely turn the whole meeting over to it but we could certainly make it –

DR. WARREN: I would support the population of the committee of putting most of it in this area.

DR. MIDDLETON: — reserves the right to have some of – the quality committee reserves the right to have some – not to be co-opted by –

MS. GREENBERG: CMS, ONC. This could be a major focus. I don’t think we have any big action items from other subcommittees or whatever.

DR. MIDDLETON: We’re not going to get any preview of any kind of the meaningful use, CMS stuff at that December timeframe. I know it is going to be pretty much baked by that -– it will go into the public comment period where we are just done.

DR. WARREN: They are not going to release their first report until December 10th so there won’t be anything in November. They are running like crazy trying to get ready.

MR. LAND: It seems like one thing that hasn’t been discussed. If we are going to focus to some extent around health reform, which I think is a real topical thing to do and if we related to the uses, if we had some kind of a natural study that we can build upon, what were the questions that were being asked in the last several months of federal agencies that the federal agencies couldn’t answer?

Census and National Center and HRSA and OMB and all these agencies involved in this discussion have been asked or are asking a lot of questions that couldn’t be answered. If we knew what those were, if there were structural issues, if they are data release issues, if the data didn’t exist, all the things that we talk about here, that was form an agenda for us for saying if we are going to be serious about the future around health reform, we got to at least take into account what has been going on right now.

DR. SCANLON: They are in the report. Measuring access, quality, efficiency, and value – We did not go to any depth on any of those dimensions.

DR. FRIEDMAN: There was actually some attention given the last time around to questions that were asked and in some ways more importantly were not asked in the early ‘90s. Rick Kronig(?,) who was at NCHS for a couple of years. I think now he is at USC. One of the things that was not asked apparently of the agencies of the time, there was a huge amount of modeling work that was done, was what is going to be the impact on health.

DR. STEINWACHS: But did they ask the financial help though.

DR. FRIEDMAN: I would second what you said but I would also say taking a look at the list critically and seeing what kinds of questions that may have been omitted that should have been included.

DR. HORNBROOK: I argued earlier about putting an output measure up front in the health statistics regime – quality adjusted life – if you want a paradigm shift you can also go in the other direction and think about the physical system that tracks behavior, environment, genes both inherited and acquired, that relate to determinants of health. If you live in a polluted area, if you engage in behaviors like smoking, drinking, gun ownership, fast driving, et cetera, these are things that then determine your health in effect. If I know your zip code I could use geo cutting techniques to get a pretty good explanation of a large variation of your health through those general community clusters.

MR. PARRISH: Go even further back to income wealth and social cohesion and others.

DR. HORNBOOK: I was going to add those in too – disability, sexual practices, genetics, et cetera.

DR. WARREN: And what catalogs on target to be delivered to your door.

MS. CASH: I just want to reintroduce myself. I am Amanda Cash from HRSA and I’m at the Office of Planning and Evaluation there. I want to just reiterate a couple of points that people have said around the table is that organizational structure is an issue for data collection use and what we do with it and also the point that you made about the importance of data in this new administration. Our new administrator, Mary Wakefield, for HRSA one of her biggest points what kind of data systems do we have, what data are we collecting, and what are we going to do with it and why aren’t we collecting data that is better?

She just hired a guy from NIH, I think the Office of Minority Health. His name is Kyu Rhee as HRSA’s public health officer. His job is to implement public health back into HRSA.

Our office is conducting a small evaluation that this committee may or may not be interested in and we are now collaborating with AHRQ on model communities that are linking primary care and public health systems and how they are doing that.

We are going to look at approximately six to eight maybe nine communities and data collection and information and data exchange are going to be a big part of that. On the very opposite end of the spectrum we are going small instead of IBM and FedEx and Walmart. We are actually going to work at communities who are doing this. And then what it is that we as an agency are doing to help them or hinder them so we can look at those factors.

Our administrator wants this done in nine months. It is skeptical that we can get this done in nine months but we are going to try our best. That is right around your June timeline I think and July. If you are interested I would be happy to include anyone and if you have any input on communities that you think are really innovative in these types of things then we would be interested in hearing.

DR. SONDIK: I missed something when I went out of the room because you seemed to have gone away from the workshop or we are talking about using the next meeting is that it to discuss this?

MS. GREENBERG: We can do both. The hear shop and then devote quite a bit of meeting to it. People started talking about really engaging the Full Committee more for all the liaisons and et cetera. I had suggested doing that the day before the full committee meeting but it turns out a lot of people are at AMIA so that is not going to work -– it is a combination. I don’t think we need to give up the idea of a hear shop because from a budgetary point of view it is always advantage for us to hold a hearing in conjunction with the full committee meeting because we don’t have to travel the members in twice.

DR. SONDIK: With the idea being to have the –- what am I trying to say? When is the next meeting? November. It would not be possible it would seem to have a really solid workshop with this amount of lead time.

MS. GREENBERG: Well certainly not with commissioned papers but if we wanted to do something like that I think we have to do it the first of the year.

DR. SONDIK: Come back again to your point and the points that have been made. I don’t think we are going to see a time like this for some time in the future. It really is an emphasis I think on the question of the adequacy of information to guide the system, to manage the system, and to do – I don’t want to lose sight of doing the research on the system because this isn’t just the thing of picking up 20 indicators. This is also having the research base so that HRSA can look at the community types of things that it’s involved in and across the board. I see this as very mainstream to what this committee is about and I think it should take a lot of discussion or some discussion or an adequate amount of discussion of the full committee because I don’t see this as a population issue.

I really do see it as a major contribution that the committee can make at this time. I would hate to see it not get the kind of light. I was going to say something more harsh I guess but just dribbled away to use a polite word in sort of discussion. I just see it as so mainstream to what the committee has done and I also see that the emphasis from what was done in 2002, actually earlier than 2002. It came out whenever it was done.

I see the emphasis. I think then it was preaching to the converted but people weren’t willing to act on it whereas I think today they will be willing to act on it. If health reform passes then there is going to be a need for all this information and if it doesn’t pass the situation is only going to get worse and worse and the point about what does this system produce?

If we talked about production functions in 2000, that would have gone nowhere. I’m not sure we should talk about a production function for health now, but at least some people think about it in those terms. What are we really producing?

I think the time is right and my suggestion is to have a significant discussion of this with the whole board in November aiming to do something maybe four months from then, maybe five months from then because the weather will be better in March.

MS. GREENBERG: No one can wait that long.

DR. SONDIK: Okay, we can’t wait that long.

DR. WARREN: We were talking about that when you went out. We really saw this as a full committee, and our share of standards. This is the dialogue we need to be having in our subcommittee and I think it needs to come together so we were talking about taking a major part of the November full committee and really beginning to start the dialogue.

MS. GREENBERG: That doesn’t preclude the Populations Subcommittee meeting the day before if – available and also doesn’t preclude bringing in a few additional experts. I think a few things. When you said something about people weren’t ready to act. Now I think the situation we are in now is people are ready to act and they will act but with or without this committee’s guidance. I guess I believe as a mother of this committee that they will act better with the guidance of this committee. I see this motivation of people to act and I absolutely don’t think that the other two FACAs in this hearing.

PARTICIPANT: What are the other two?

MS. GREENBERG: The HIT policy committee and the standards committee – they are just totally dominated by the moment of all of the new things in ARRA. I said to Harry at the break or at lunch, I said it really strikes me, particularly when I see all these things coming out of those two committees, how fortunate the national committee is. We are 150, 200 percent tied up with all of that stuff because we couldn’t do anything else if we were and this committee, although we do have certain things related to HIPAA and others that we are obligated to do. We actually have in some ways and have always had in my time with the committee some luxury to sit back and make the kind of reports that were made in 2000 to 2002 and even now there is an opportunity there because we’re not completely dominated by a reg schedule. I think we should really take advantage of that.

He said he sees in the HIT policy committee is more of a policy implementation committee, policy to implement all of this stuff. Anyway I think we all agree. The decision is what do you want to do?

DR. STEINWACHS: If we approach the whole committee and Harry tomorrow morning with we will take Friday. The things we have been talking about are the list that Bill has here from access through value and output. How do we structure the discussion?

DR. WARREN: One, Standards wants to come sponsor with you.

DR. STEINWACHS: Everyone co-sponsors. Quality was the first. Quality has been an afterthought.


It’s the cost that goes first. Let’s talk for a few minutes about how we might suggest structure then that could be refined in a conference call or something like that.

DR. GREEN: One thing I would like to see structured (into it is I would like to hear from these two characters again. I would like to hear from these two guys again. I am being redundant here and maybe I am beating this up, but I am also eager to hear from our liaison representatives from the other agencies and the organizations near you. I would like to see something happen that makes sure that we, having met, that gathers their views about their three slides. I think your three slides is a great organizational framework for this.

MS. GREENBERG: Three recommendations. If nothing else in this first phase we have potentially gone 30 recommendations to three. Now admittedly some of those three are multi-part.

DR. GREEN: But didn’t we go around there.

MS. GREENBERG: But still one of the things about the original report not only was some of the organizational things that there weren’t a receptive audience but there were so many recommendations. In all fairness that shouldn’t stop people but it is easier somehow to ignore 30 recommendations than two or three.

DR. MIDDLETON: How about in November we have the CTO CIO guys.

MS. GREENBERG: I think trying to get him. Tony Park.

DR. MIDDLETON: And also what the NCVHS is and help them understand –-

MS. GREENBERG: We invited Tom Frieden because of his strong interest in data and everything, but we didn’t give him a lot of notice and we heard back he wasn’t able to come. But I thought we would try again if we could re-invite him for the November meeting any part of it that he would be willing to come. I think he would engage.

DR. SONDIK: There is no question about it.

DR. WARREN: Would it also be, Marjorie, reasonable for us that for each of the liaisons we have on the subcommittees to ask each liaison what their department is doing?

MS. GREENBERG: What their agency is doing. We don’t have a liaison but we do have staff like from HRSA, and particularly because of this nexus between public health and –

DR. WARREN: I am talking about – if you look our membership list, you have this long list of liaisons that each subcommittee has. If each subcommittee could pull their list and get a report from each one of those –

MS. GREENBERG: I think we could do something like that.

DR. STEINWACHS: We might even be able to get in that question of what questions do they ask – even if you only got a handful back that would be very helpful.

MS. GREENBERG: You know NCHS and AHRQ have websites that post the answers that they provided.

MR. HITCHCOCK: I’m a little concerned because people ask the questions of a sophisticated group. They know what the agencies can provide.

MR. LAND: We have to ask those people who are asking the questions.

MR. HITCHCOCK: Right – talking before that there are person from the research service, CBO, OMB.

DR. STEINWACHS: I think we have a set of next steps. We get the report back tomorrow, Marjorie, do we?


DR. STEINWACHS: We can catch Harry before then, in the morning.

MS. GREENBERG: Larry said he wanted to hear more from you all and we do have them here today and we won’t have them tomorrow. Having heard all of this –

MR. PARRISH: I think he meant hear from us again.

MS. GREENBERG: No, we would want you to come back in November if you can. I was just going to say since you are here today gone tomorrow is there anything more you would like to share with the group for particularly how we might use a short term.

DR. FRIEDMAN: I wouldn’t describe it as wisdom, Don. I would request that – I think what has been said is really terrific and very hopeful and having said that I think having listened to and participated in a fair number of NCVHS hearings I think it will make sense after the discussion tomorrow perhaps step back a little bit, take another look at it and then see whether and how it might be specified about.

There seemed to be two different directions that are both important, one of which is in a brave new world of EHRs and PHRs, et cetera. How do we reposition health statistics as it were and how does health statistics contribute more to clinical care and how does health statistics build upon data to clinical care?

The other side of it, which is partially reflected in what are the other agencies doing, is will we have a huge number. We just have a mess of data out there and what do we do about it. I think that again I think some of the countries that I think are on the way to being most successful with this are countries that have concentrated on what is the least expensive and most economical approach to making much more sensible use of what we have, which isn’t to say the future should be ignored.

I don’t think it should be ignored at all, but again I think that there really may be quite a bit to be learned from trying to look more into some of those approaches in two or three other countries and trying to get a better sense, which does may require if any of that were to be implemented here a somewhat different organizational approach particularly at the federal level, which means you just can’t have dozens of different datasets wandering around in the same agency or different agencies with their coordination or more coordination.

DR. SONDIK: I just a footnote to that. You mentioned Australia and you mentioned Canada and England. I admire what they do in Canada. They are very organized but we can’t lose sight of and this is not an excuse but we can’t lose sight of the fact that the population size in Canada is one-tenth of what it is here and in Australia it is one-fifteenth of what it is and that in Canada they have their own issues related to the provinces, individual provinces. You know this better than I actually, individual provinces being coordinated and so forth. But on the other hand they really do seem to have much more of a better handle in Ottawa of what the health of Canadians looks like.

DR. FRIEDMAN: To think of it in a colonial way. Let’s pretend for a minute that we are the empire and they are the colonies and we can think of Australia and Canada and England as our laboratories for success.

MS. GREENBERG: Has anybody read this new book by T.R. Reid?

DR. SONDIK: I saw him on television. Does that count?

MS. GREENBERG: Because I think it is so relevant to this discussion. It is deeply cultural that these other countries have universal coverage and they also believe in population health data and it is a lack of – he says it’s a moral issue really — that hasn’t been embraced in this country that in fact it is a moral issue that everybody should have health coverage. He quotes some certain things that have been said. He said we should be able to learn from these other countries.

He actually dedicates the book to Dwight D. Eisenhower. You say why in the world? Because Dwight D. Eisenhower at the end of the world thought it was going to take him five weeks across Germany and he got off across it lickety split because of the Autobahn that had been built in the ‘30s and of course Dwight D. Eisenhower then came back and built the Interstate Highway System. It is just a lot of things resonate with that book.

DR. GREEN: I was going to bring this book up also for Chapter 5. I think it is Chapter 5. It is the French, not exactly colonial but another contest anyway. What it emphasizes there is the carte verte, the green card where they now every French person already has a green card, 62 million of them. They lose 3,000 a month. You put it in a mailbox and they get two-thirds of them back in under 14 days. It has your health record on it.

It would be so cool to find out if they are doing anything with those data. That is a PHR discussion they know and that intersects and this book is an example of that. If we are going to think about international advice I want to get France on the table as having done something recently that looks pertinent.

MS. BREEN: Doesn’t this kind of hark back to and you all didn’t really flush it out but you said that one of the things that your informant said was that we really needed to change the way we communicate about health information in this country and the way Americans think about health information. It seems like one of the things a subtext of this conversation is how do Americans think about health information and I don’t think they think of it as integral to their health, but I think we want them to if we are going to move forward with this system of using health information in order to improve healthcare and health.

I don’t know if you have anything or our consultants have anything more to say on the specifics of doing that. It is five o’clock and I don’t know how long we get to stay here but I am feeling that we are having a good conversation and I am wondering if we are ready to move forward with either the full committee or hearing or if we should continue to have some discussion to try to figure out what we want to do. I took some notes and have some ideas that maybe where we seemed to be wanting to go I think we would seem to want to ask what questions do we need to evaluate health reform and who we want to get that answer from I don’t know. What do we need to add to our health statistics system to be able to answer that?

That is not the only thing that came up. It seems like that was the boiling down of what we wanted to do. It seems like we need to flush it out a little bit more before we move forward, but I do think this idea of having something to present for the 60th anniversary of this committee would be excellent.

DR. WARREN: I just have a concern and part of it is because I have been doing a lot of reading because I am now involved in international standards development and it is very clear to me back to what was said. When there is a cultural imperative in the US that does not exist in Europe and does not exist in Australia and that cultural imperative for them is that is the family, the community that is important inoculation. It is not the individual and our country it’s the individual that is important. When you start getting into uses of health data we are interested in how that health data may be is for us individually or against us. There have been some spectacular situations that have hit the newspapers and TV where it has been used against. People are looking at that and responding from a cultural imperative.

My question is would we get bogged down if we start looking at some of the privacy and cultural and moral, as you were bringing out, issues? Can we start looking at just informing us about the data and then adding in this conversation on top like in four or five months about where our culture says data needs to be put in and what we do with that data? I don’t know if it fits in to what you were talking, Ed, of let’s focus on the data and the questions and not the how’s.

DR. SONDIK: I think that is a constraint. Those are constraints. Those are issues that have to deal with.

DR. BREEN: What I was thinking about was this November.

DR. SONDIK: I think it is worthwhile putting on the table but it says that’s one of the reasons why the countries behave differently but on the other hand, if we want to maximize health, however you want to measure it whether it is functionality or longevity or percentage of kids who die, infants who die or whatever it might be, it seems to me those are the key things.

Frankly, this is the kind of a thing you say over a drink but I think it is really bastardization of things and I know you are not saying this to put this sort of the principles first like it is confidentiality and privacy above all as oppose to something that goes along the idea of health outcome because if we put the principles first and debate the principles, then we are not going to make progress on the other as critical as those things are.

DR. BREEN: The other thing is health outcomes the more we looked at them the strongest predictors except maybe if you are looking at a breast cancer outcome screening. Health in general is most strongly predicted by the socioeconomic status, your own, and the community in which you live. We really do need to embed this, the individual, and the health of the individual.

MS. GREENBERG: Even if you want your own health to be – you better think of the –

MR. HITCHCOCK: What Nancy just said was sort of leading into what I was talking about the community. We read a lot of Mayo Clinic lately and how efficient they are and the outcomes and the quality and the cost savings. It may be all about Rochester, Minnesota but there are probably some data underpinnings there that might be useful for us to look at. How do they quantify some of the centers that have led to there being able to provide better care for less cost?

DR. BREEN: And that is I guess what HRSA is trying to do with their project. It is to figure this out as how the communities working or not working.

MS. GREENBERG: Just in planning to just have the nuts and bolts in here. From a planning point of view both from our budgetary and otherwise and then also in our continued relationship with the gentleman –

PARTICIPANT: They have been elevated from boys to gentlemen.

MS. GREENBERG: We engaged them for Phase I and Phase I is essentially over.

DR. BREEN: I think we should engage them for your Phase II.

MS. GREENBERG: I said that in the beginning so that we don’t have to say it in the end but you felt that way too. I think from what I am hearing you want to do some things around November, which would include a November full committee meeting and which could include bringing in certainly some additional people and possibly not just people from the Department or the Federal Government, but I think that can be decided in a conference call or whatever. Are you thinking maybe two or three more hear shops or whatever?

Dr. STEINWACHS: Between then —

DR. BREEN: And the end of the fiscal year.

MS. GREENBERG: Also we have to think back if we want to new iteration of a document to not necessarily a final thing but to at least look at. That would mean we probably have to do anything that was going to go into that by March.

DR. BREEN: So we need a writer.

MS. GREENBERG: I think we have the writers and I think they are even willing to help us set up some of the hear shops.

DR. BREEN: So they would rewrite the Vision for the 21st Century?

MS. GREENBERG: Selectively.

DR. FRIEDMAN: Selectively and then we have something else that we would at some point like to float but now – hopefully we can discuss it around June. It is just going to be in the hell of peer review so we are a little bit constrained about floating it out before that.

DR. BREEN: Do they need to be budgeted then?

DR. FRIEDMAN: No, it is budget neutral. We would be glad to participate in the hearing. Both Gib and I are pretty obsessively oriented towards specifics.

MS. GREENBERG: That is why I am trying to get some idea of what we want to do.

DR. FRIEDMAN: One of the things we would like to do is help try to work with Marjorie and the committee on specifying the hearings and what we really want to get out of each of them so that it is a pretty directive set of answers emerging.

MS. GREENBERG: So a general sense of this that you want and then you will present it tomorrow and we will get feedback. That is helpful.

DR. STEINWACHS: I am sorry to wear down but I don’t know about the rest of you. We have a little more of the agenda but why don’t we pick it up next time?

MS. GREENBERG: A teleconference.

DR. STEINWACHS: We could do that, too. We did the hearings on data for health reform and indeed there are elements of that that fit also into this. Maybe between now and our next meeting maybe Dale and I can work together to at least put together –

MR. HITCHCOCK: I think a one-minute update on the hearings on modeling and data sources. At the same time we are having the hearings and things are moving forward very rapidly. As far as getting the ear of the people who are making the healthcare reform decisions, we are gathering information. Jim reported back to them. You remember in the modeling area we had people come in and talk about their models. We had about nine groups that could do models. The Department as it turned out, they were using – I think Lewin, Urban, and Gruber from MIT, that was working earlier on the Obama campaign.

We tried to pull together a couple of reports based on those models, their systems. We had one that was just a very descriptive short report and we had another one that was supposed to compare models, strengths and weaknesses, and neither one of them really worked out as well as we had so we didn’t really distribute them. But Jim working with the people in the Health Reform Office’s Department, they settled on Lewin, Urban, and Gruber.

We also talked to them. We had people come in with sources available data within the Department. As we all pretty much know there is AHRQ with the MEPS survey and the NCHS survey, and both NCHS and AHRQ have received all sorts of questions from the Healthcare Reform Office. Like Ed or somebody was saying earlier, they had posted these questions on their websites and the responses that they were able to give to the policy makers. That is the short of it.

DR. BREEN: What is the kind of take home message there?

MR. HITCHCOCK: Our take home message was even though we did not get a formal product out of the hearings that we had they were extremely valuable and the information that we get is being used.

DR. BREEN: Excellent.

DR. STEINWACHS: I think the only other thing I remember was the issue of linked data and access to it came up in those hearings. I remember Jim Scanlon was talking about maybe putting a data center inside ASPE current facilitate for –

MR. HITCHCOCK: It is still on the table – local downtown research data center that people from the department as well as the Congressional Research Service and CBO and others could come in and use some of the productive data.

DR. STEINWACHS: If we wanted to write a letter and I think that is sort of the question that draws on this. There was a sense of some progress and recognition that we need the mechanisms that CHS had made progress in this too of data centers. We need to keep pushing it seems in that agenda. How do you make available data that otherwise is identifiable by virtue of linkage and can you do it eventually where you don’t have to physically come there? You don’t have to know all the time, but is trying to push that agenda might be one thing that comes out of this.

MR. HITCHCOCK: Some thing we don’t have I would like to see is really for the Department is the description of our various data centers and how they work and what you have to do to access them both at NCHS and at AHRQ and at CMS. We really don’t have that in one place now at all.

DR. STEINWACHS: On the modeling, I remember from RAND. I can’t remember her name. She gave a very nice summary. I don’t know where the transcript was, but sort of talking about what we would really like to have in data to be able to do the kind of modeling. When you are doing the modeling in a sense you are also thinking of the same variables you would need to do the evaluation usually. Bill Scanlon and I talked about this a couple of times.

It might be worth thinking about trying to draft a letter that hits on two points, again, this data linkage and access to linked data where the major issue is really protection – and the progress that we made. Efforts need to continue down that pathway. There might need to be more discussion to do that well.

I think the other was I think there were some gems about the kind of data for health reform modeling that would also be useful in a sense of thinking about issues that are here.

MR. HITCHCOCK: There is industry and employer data, which again means probably something outside the Department that we would want to be looking at.

DR. STEINWACHS: I still think if there were ways to tap into private datasets, and I don’t know what the quid pro quo for the government would be other than pay money for them. It would be interesting to think about ways to link privately held data that bears on behavior for the public, bears on health issues. And then we turn it over to Ed and he will model it for us.

DR. SONDIK: Actually we have that data. We have immunization data, with the underlying issue there being is immunization safe, particularly for children? That data — it was a tortuous path but it did come from the manufacturers. I would think there are ways to –

DR. WARREN: And there are other data from drug clinical trials.

DR. SONDIK: I would think there are ways that we could do that. An issue that I just want to put in front of the committee is an issue that is being discussed in the Department now is the cost effectiveness of prevention because this is one of the interesting fallouts from health reform.

DR. STEINWACHS: And the profitability of illness? Making money out of illness.

DR. SONDIK: CBO has been very tough in its scoring of these bills with respect to this and it is getting a lot of attention as to exactly how does the CBO go about this and are they wrong. They are not wrong. It’s just a matter of outlook. It is a matter of how far down the line you look and kind of a balance. Is the work cost benefit or is cost effectiveness and then what are the measures of effectiveness and value tradeoffs? Those things are very interesting. I don’t think those things were as discussed as much in my experience at the upper reaches of the department. We now have a set of people who are really analytic. They need to know this. I think they are well poised in their background and so forth to be able to understand this and do understand it, but it’s such a major national issue.

DR. GREEN: Has there been any further discussion of that brief conversation we had last meeting about the development of fellowships or research enterprise to start growing people who basically the reason they get up every morning is to do a better job of turning data and information. Has that gone anywhere?

DR. STEINWACHS: I wasn’t at the last meeting.

DR. GREEN: Did I dream this? Does anyone else here recall?

MR. HITCHCOCK: That is what data.gov is trying to do, too, in a certain way. They even run contests with very good prize money for individuals and industry groups too to see how the data that we are putting out on data.gov is mashable, how do we mash is the words that they are using. Everybody say exploited or misused or used. We are getting a new group of people in to looking at data.

DR. WARREN: All those people who have grown with Google and everything else so they can do the mash ups which move the datasets.

DR. GREEN: I think the answer was no. There really hasn’t been. Is that right?

DR. HORNBROOK: NCHS has a fellowship through Academy Health. I am on the board of review and there are usually two candidates every year. The major barrier to that is logical requirement of moving to Hyattsville to be near the data to be in the building where the firewalls are. That means that certain people who have family obligations or multiple people who have to move are not as flexible as others who are more flexible.

DR. BREEN: Don’t you have data locations, off-site data locations now?

DR. SONDIK: We can use the Census. It is good to actually be there. You know what it is interesting. It is a good point. I don’t think people necessarily need to be there absolutely full time.

DR. HORNBROOK: Some of the fellows have pushed in a sense of being there four days a week and then getting a three or four-day weekend every once in a while.

DR. GREEN: I want to keep pushing. I am planning on bringing it up next time again. There is a human capital deficiency. Two fellows are better than zero. I think there is a lot of experience of when you run a fellowship program that takes 10 or 12, 15, they cycle. They become fellows for three or four years. They have deliverables that they have to come up with. You become a community that becomes self-generating in renewing for the longer haul. If we are going to talk about a renewed vision of health statistics, it is essential that we talk about human capital development to drive that new vision home.

DR. WARREN: One of the things that needs to happen with that is for us to start looking, to follow up on Mark, is the long distance collaboration. We do this at a very new way rather than having people physically present in this.

DR. GREEN: They may have to be sponsored by an entity that is using health data to do something on. They have to have the sponsoring institution. They have to do something there but they also become part of the national scene. We don’t know how to do that. People at Hopkins have been writing fellowship programs like this for a very long time.

DR. STEINWACHS: There is – I am on it again, a committee at the National Academy that reports every five years back to Congress on biomedical and behavioral research personnel requirements, which is essentially a report about the National Research Service Award System – the allocation and so on.

When you were talking it made me think about if there is a way to tap into the NRSA awards because you could try and stimulate that funding. I don’t know whether the National Institute of General, NIGMS, General Medical Sciences or something. We have to find an institute within which they would entertain this kind of application and it would be ideal if it were multi-university instead of just being one.

MS. CASH: The Association of Schools of Public Health has fellowship programs and their biostatistics students would be a good match I think for what you are talking about. They have had long-standing fellowships with CDC, with HRSA, and their sister agencies. It’s not ADT(?) anymore. I don’t know what it is. They changed their name – and then the AAMC survey. All three share the same fellowship mechanism with CDC. They also have the MMTA(?) and also at USDA.

DR. FRIEDMAN: At the risk of prolonging this discussion let me quickly say that in terms of personnel needs there is also a more daily need at the non-doctorate level. Schools of public health don’t provide training in health statistics. The folks who end up working in those functions, whether it is vitals or VRS, et cetera, tend to be frequently very narrowly trained without a population health perspective and end up being highly specialized. You have the cancer epidemiologists and they know their dataset. They know the standards. It is a real issue and it is an issue in the universities but it also an issue – 50 state health departments but in a lot of state health departments.

MS. GREENBERG: I was thinking too that if there were in the out years more robust measures in the meaningful use, or more bi-directional exchange or whatever between public health and clinical EHR systems, that these new extension centers could develop some expertise because they will be out and about and be a vehicle for trying to promote some of this type of work.

DR. WARREN: The new research centers? What do we call them? They had an acronym. I don’t know what it was.

DR. GREENBERG: That is something different than the extensions –

DR. WARREN: He said there were six programs. So number one with the extension – a terrible acronym – they were supposed to support the extension centers. I didn’t read that into the bill but they are.

DR. STEINWACHS: By the time we are done, Judith, health statistics will be as good as our agricultural production statistics.

DR. WARREN: One could only hope. They could branch out in there.

DR. STEINWACHS: Even know what’s likely coming up in the next season.

DR. BREEN: We do need an American analogy, the metaphor we are moving toward.

DR. STEINWACHS: Americans don’t seem to go to comparative health systems information in the way in which you would hope.

DR. WARREN: No, but they do on their local ag extension center and they have been extended in health and they are very successful. At least in my part of the country they are very successful. They are highly trusted people in the community in those centers.

DR. BREEN: But they don’t look at other countries, do they?

DR. WARREN? Yes. They go out and tell the other countries how they work. Oddly enough other countries are bring our ag people out to help.

DR. STEINWACHS: Thank you all very much. I appreciate those who attended by phone.

(Whereupon, at 5:05 p.m. the meeting was adjourned.)