[This Transcript is Unedited]




(Joined by Quality)

November 18, 2008

Radisson Hotel Reagan National Airport
2020Jefferson Davis Highway
Arlington, VA

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 352-0091


DR. TANG: Our goal for the next 45 minutes is to figure out and organize our thoughts on the topics for a hearing. This morning what we talked about is where does this belong in this bucket or this bucket or in a shared bucket and is inside or outside NCVHS and in the hearing. I’m trying do two lumping exercise and then it will all automagically appear.

The first lumping exercise is it NCVHS scope. Yes. No. The second dimension is in the scope of this hearing. Yes. No. How do I do that on one page?

What we going to do is talk about topics and then we’ll map it on which quadrant. Is it within NCVHS scope or is it not? Is it within the scope of this proposed hearing or not? Then the next scoping exercise will be in which of the four work groups does it belong and how does it overlap? Then the magic schedule will come out of that.

DR. SUAREZ: The proposed hearing is this patient-centered health.

DR. TANG: That’s one of the things that was discussed. You can talk about topics you think would be interesting to hear about but then we’ll figure out is it a nice thing to hear about but it doesn’t belong in NCVHS. Is it a nice thing to hear about and it doesn’t belong in this particular hearing. There were a lot of things that were discussed. Everything from how we’re going to get everybody, every citizen in the country to change their health habits to what we’re going to report on in population health. We just want to try to segregate these things, categorize these things. Does that make any sense? Start throwing out some of the topics from this morning and let’s see if we can organize it.


DR. TANG: PHR. What about PHR?

DR. SUAREZ: Everything about it.

DR. TANG: I’m in for it but not that big.

DR. SUAREZ: There’s the data. There’s the security and privacy.

DR. TANG: One thing at a time. Data. Is it in NCVHS or not? It’s NCVHS. Is it in the hearing or not? It’s in the hearing.

DR. FRANCIS: What are the data flows? Into and out of PHRs.

DR. TANG: Is that in scope of NCVHS? Yes. Is it in the scope of this hearing?

DR. BLAIR: Can I just add one thing? I sort of feel like I need to although I’d hate to complicate things. There’s like four different market segments for PHRs and the data varies because if it’s health plan tethered then the data might be health claim information and it’s kind of defined. If it’s provider tethered like from a hospital or a large medical group then it’s going to be similar to an HER but if it’s stand alone then it could wind up being something that google is pulling down from measuring provider quality and cost and a lot of other things. I don’t know whether you want to define the market segment you’re talking about with PHRs because if you have all four the fourth one is inoperability you could come up with very different answers.

DR. TANG: I heard two concepts. One is data source like is it from claims. Is it lab? Is it a provider? The other thing was the business model of the PHR. Let’s categorize those. The data sources. In or out of NCVHS? In.

DR. BLAIR: If I may. I think the health plans and providers tend to be in but in terms of if it’s an independent PHR like google or WebMD they are going to pick data that I don’t know if we could wind up having any influence at all as to what that data is or what the standard should be for.

MR. REYNOLDS: My only comment is it might not be standards but it sure does affect privacy and security because it’s the same person.

DR. BLAIR: Their data tends to not be patient specific. It’s usually wellness information.

MR. REYNOLDS: They are PHR. They are pulling stuff from wherever and once it’s in there.

DR. CARR: It’s also proposed hearing and then gets into that.

DR. TANG: I was going to derive the proposed hearing from this exercise if there’s any effectiveness to this method at all.

DR. SCANLON: I have to start with the question with what makes something within NCVHS’ domain?

DR. TANG: Tradition.

DR. SCANLON: Not good enough. The issue is we are a government advisory committee and health data is a focus of our activity but it doesn’t mean that all health data falls within our purview. It’s only when in my mind only when there’s a government interest. Privacy and security are government interest because we don’t really necessarily want to rely upon an open market to guarantee that. We decided as a society that therefore we’re going to intervene. When we talk about these different things that’s the filter I have to go through. It often comes back to when you name data coming from a provider or from other source it’s the whole issue of privacy and security. It’s the compelling feature that puts it in there. You can also think about from a population perspective which is to say there is some value in terms of having information on the population for one reason or another and there’s value in having us doing the collection of that more efficiently and that becomes a social function. It’s thinking those ways is my filter to say whether something is in NCVHS’ domain or not.

DR. TANG: Can I summarize in three bullets. One you mentioned is the government interest. Another is policy implications and the third is public good. The other thing that Jeff mentioned was the type of PHR. Data sources is up here. Is that a NCVHS in hearing?

DR. BLAIR: I would suggest that we leave that entirely to the market because they are going to wind up either taking information that’s comparing healthcare providers in terms of quality or cost. We don’t have much to add in terms of those types of things. Or who the providers are in your community and things like that. Those I don’t think we can contribute to. The first two where the payer is the source or the provider is the source I think that maybe our main focus.

DR. SCANLON: I think we need to be aware of what’s happened in those areas. It’s the issue not necessarily of the public sector doing any design or initially imposing constraints but it’s the public sector responding to what happens within the open market and deciding whether or not it’s comfortable with it from a societal perspective. It’s within our domain because we need to know what’s happening not because necessarily want to shape it.

MR. QUINN: I think one of the ways of looking at this that would help is instead of looking at it from various technologies let’s look at it from the higher level and say NCVHS is about measuring vital statistics. New types of data that people are reporting are available from other electronic sources that have traditional have been available are merging. There’s a whole set of activities around understanding the use, applicability, and limitations of these different sources of data and identifying what those other sources of data are.

DR. TANG: That’s still under data sources, yes?

MR. QUINN: It would be under data sources but I don’t think PHRs is an inclusive term and I think that looking at it from the perspective of let’s figure out what today we’re sourcing data to measure public health, vital statistics, in these ways. What are ways as other sources of data become available that we can source that data and are there complications or limitations or benefits that characterize that data that don’t exist today?

DR. TANG: I sort of qualify it with other to make sure that we say not only PHRs.

Other topics? Privacy and security was mentioned. Privacy and security of data in PHRs.


DR. TANG: Is that in our out of NVCHS? It’s in. Is it for the hearing? Yes.

MR. QUINN: I would put that as a core thing but it’s something as you’re looking at data sources it’s one of the key criteria for looking at them if there are privacy implications no matter how good.

DR. TANG: Jeff?

DR. BLAIR: I have a question. I don’t know what to do with this. We’ve got privacy issues around PHRs. We’ve got privacy issues around health information exchange. We have privacy issues around electronic health records and separately around e-prescribing. In some cases there’s some differences but in a lot of cases they overlap and I don’t know how to deal with that. It’s just a question. How do we deal with overlaps?

DR. TANG: We talked about the privacy aspects of data in PHRs and what I added was privacy aspects of data through HIEs to just at least capture what you said. I’m just trying to capture concept.

What else did we talk about this morning? We talked about other data for reinforcing health behaviors. I think it was sort of on this side. Is that an NCVHS topic or not applying the Bill Scanlon criteria? Does that have a government interest? Have policy implications in part of public good? It’s the data that would reinforce healthy behaviors.

DR. CARR: Just to refresh. We’re thinking about health and we’re thinking about data gaps and sources of data. There are sources outside the medical model. Those were some of the things we were talking about.

DR. TANG: Does that fit in NCVHS and hearings? I think you argued for hearing. Does it fit NCVHS scope?

MR. QUINN: I would say it fits this scope if you’re looking at it as a way of measuring the health of the nation.

MS. MCCALL: There’s the picture of 21st century public health and so every single one of those contributors to health there’s a potential data source behind it. The question is really where does it come from? How do we begin? I definitely think it’s the scope.

DR. TANG: I’m waiting for the head table that has the organizational memory and knowledge about NCVHS. Is that a yes?

MS. GREENBERG: It’s an application or it’s a use of data whether you want to include it in this particular hearing is another story but it certainly is within scope I think.

MR. REYNOLDS: We’ve done all the HIPAA stuff. We’ve done all the privacy. We’ve done all the e-prescribing. We’ve done all the other. Everybody talks about that we’re in health information and then we’re in policy. Back to Bill’s point any of this stuff is going to have to do when you’re capturing information from a person about a person or trying to influence a person we’re going to have to have some policies, procedures, standards, controls, other stuff around it. I’m struggling personally to see what’s outside the purview.

DR. WARREN: Well that was my other question.

MR. REYNOLDS: I am really struggling to see what’s outside the purview.

DR. SCANLON: I think that there’s an issue of maybe there’s nothing is outside the purview when you first assess it. You may decide that after you’ve looked at you don’t want to interfere. I think the example that you brought up there was a case made for why there should be some public sector intervention. I can think in this area at least. I don’t have to have the data to be able to see what the outcome is going to be. There is value in terms of variation not sort of slicing some of that variation which the other word for that may be innovation. There is a question of what’s happening and then deciding what the public interest is and whether or not there is some benefit from standardization. Privacy protections. In some respects that’s a core value. We know that if there’s going to be a threat to privacy in some of these activities this is within NCVHS scope there’s a potential public interest in this and we would want to intervene. Whether or not some technique is better in terms of promoting healthier behaviors, very hard for us to judge. It would be very hard to think of a government role in terms of saying this is what we’re going to dictate. This is going to be the kind of information people have to promote health. That’s the kind of thing where you want to leave the market to work. You want to make sure that there’s no harmful side effects from the market working on it’s own.

The other case you can make is if suddenly you discovered there’s a way to make the market work a whole lot better. That there’s an efficiency gain that can be made by doing some kind of complimentary activity to facilitate it.

I think it’s in the hearing scope and at this point it straddles the point. Maybe it’s not within our scope to act on in terms of recommendation and maybe it’s not.

MR. REYNOLDS: You were looking at the head table so let me take somebody that’s not at the head table and quote him and that’s Jim Scanlon. Going back to our meeting he was talking about the patient-centered medical home. I believe he would play this with everything. Cautioning the committee not to lock itself out of the next evolutionary step. You can get real meiopic about what’s going on now but we talked about these next steps of things that may happen and PHR is a great example. We’re the only ones having this kind of, in my opinion, horizontal discussion on all this. I like what Bill said. We can walk away from anything we want to but if we walk away from them up front we may not truly be able to deal and set any frameworks for the next steps that the people can come in behind us and use it.

MS. GREENBERG: To support what Carol was saying if what this is all about is person-centered health what functionality could be more person-centered than enhancing a person’s health? I don’t completely understand what the questions you are you’re going to ask people to respond to in a different panel or whatever. If one of the things that you’re looking at is functionality of personal health records or what their role is in this whole concept of promoting and enhancing a person’s centered health view then the functionality it being in having a personal health record or something it promotes healthier behaviors or something. It certainly seems to me very much in scope.

DR. TANG: Let me ask Carol. What name do you want to give this concept that you enumerated?

MS. MCCALL: I guess where I stepped in was in a conversation of stepping outside the boundaries of healthcare and data. Again I think what we could label it as, that’s what your looking for what do we want to call it? I’d hate to call it something as bland as additional data sources. It’s kind of novel data sources for capturing the context of health. These are community. These had to do with new health services, the built environment, economic resources. They have nothing to do with the healthcare system per se by interaction with clinicians and hospitals. They are everything else that I do so somebody help me with a label on that.

MS. GREENBERG: Environmental factors are you talking about?

MS. MCCALL: They can be environmental.

MS. GREENBERG: I mean the environment not just the built environment. There’s the social environment, the attitudinal environment.

DR. TANG: You used the word context. Is that okay? That’s pretty broad. Any other topics?

MS. MCCALL: It’s data around that right?

MR. TANG: Healthcare is really what I think she was saying. If it’s around healthcare then it’s certainly within our focus.

MS. MCCALL: I’m outside of healthcare.

DR. TANG: That’s why we call it person-centered health not person-centered healthcare.

MR. BLAIR: That’s true. One of the things is if this is an embryonic or nascent development on personal health records system. There’s a lot of new application that google and WebMD and 20 or 30 other PHR systems are just designing now. We have no way to even know what they are let alone make a judgment on them. I think we need to focus on where things have begun to coalesce in the market place where there is something to react to.

DR. WARREN: I think we need to be visionaries as well as react to what’s there.

MR. BLAIR: I think we can be visionary in the sense that you now have an individual patient or consumer now beginning to look at and make decisions about their healthcare data from a health plan or from a provider. That’s a new worm for us and there’s plenty to tackle around that. Plus the fact that that information over the next subsequent years will become a longitudinal health record and that’s going to be the basis upon which providers start to make decision in the future. If that isn’t carefully regulated it isn’t just in the personal health record domain anymore that’s going to flow back into the provider domain over time. I think we’ve got our hands full just trying to understand that part of it and make intelligent visionary decisions there.

DR. SUAREZ: CCHIT has already started actually the development of certification criteria for PHRs and it’s already on the way. There’s the right meeting to establish, define some of that criteria. This is good timing to get into this and even perhaps help or exchange some communication with CCHIT with respect to the core concepts that need to be put in place for PHRs.

DR. TANG: Leslie?

DR. FRANCIS: It might just help if I outline quickly just for the group’s information what we were thinking about and then you could take it from there. One of the questions that we wanted to ask is what are the actual privacy practices of some of the vehicles that are out there. What do their policies look like? We want to know that from them. Another thing we want to know is what are the concerns that have surfaced in their experience so far. What are the questions that consumer groups are asking that are raising issues about trust? That’s another one. What are the privacy practices of the groups that are involved in the Medicare demonstration projects quite specifically? What are certification groups, like CCHIT and if there are others proposing? Our own question will be do they seem to be adequate or not.

DR. SUAREZ: What are the functional components from a privacy perspective?

DR. FRANCIS: What are they building in?

DR. SUAREZ: What are the functional characteristics of a PHR product with respect to privacy options?

DR. FRANCIS: What do we think they should be in this area?

DR. TANG: I think we have privacy pretty well covered now.

DR. CARR: I think that we’re going from macro to micro and bouncing back and forth. If I think about where we began with this hearing I would say we were thinking about content, novel content, sources of that content, standards for that content, flow of the data, and privacy. If we organize around those categories then we can fill out within that. There are a million different things within it.

DR. TANG: Marjorie?

MS. GREENBERG: I haven’t quite figured out again what the connection is that you’re interested in exploring. If you’re looking at the potential of personal health records to augment or contribute to population health data, I think we often think about getting information from those records and then all the privacy and security issues. I’ve been thinking about, and it’ll be interesting to have the statistical agencies present what evidence they have, that one big issue in population surveys is recall and what people can accurately report and what they remember or how biased what they are reporting is based on their memory or how salient the event was and all those types of issues. Some longitudinal surveys like the maps uses a diary approach or a journal and has a person keep particularly for their expenditures but keep track of all of this which I think it probably certainly improves the information they can report compared to if you just ask them can you remember how much you spent. That doesn’t take a scientific study. I think it might be interesting to explore if really a growing percentage of people had personal health records and there was some kind of core of data that it was at least recommended that related to some key population health issues, recommended as being included in the content for health record. If you think of going to knocking on their door, calling them on the phone, and they would have this incredible resource that right now people totally lack. We’re making a lot of policy on decisions that are based on what people can remember which could be quite distorted. Now that doesn’t mean they are going to write everything either. To me it’s potential of being really interesting adjunct to population health surveys if people chose to draw upon those when they are answering the questions. That’s not the idea of getting them to give you the information. This would be quite a resource to the person who is responding. Some surveys have quite high response rates so people are willing to respond and you would think they probably want to respond accurately. Some things they may want to lie about like their income. Generally people want to respond accurately but they don’t have the capability to but with this resource they could. To me that’s kind of an interesting thought of how that can enhance survey data.

DR. BLAIR: Marjorie, using that data for population health is the privacy issues around that pretty similar to those we’re using.

MS. GREENBERG: I’m not talking about somebody else using it.

DR. BLAIR: Let me finish my question. The privacy issues around that will that be pretty similar to using that information for clinical research?

MS. GREENBERG: It could be. Yes. I’m not talking about someone using the data. I’m talking about the respondent having the opportunity to use that personal health record to respond more fully to population based increase. You could enhance that possibility by at least recommending a core of data that might be included in a personal health record. A person might fill it in or they might not. It would encourage that or even questions, and I think this is where we were talking about the executive subcommittee, the way to ask questions. Not like are you a smoker but this is kind of a string of questions to really get at what a person’s smoking history is. There’s a lot of work that’s been done on that. We shouldn’t be starting over from scratch now.

DR. BLAIR: As I listen to you I get the feeling that research should be separate then rather than together with population health. You’re saying it would be a different set of questions, which would probably be right, but it would be another privacy area to be considered and included within the scope. Yes?

MS. GREENBERG: Well, it verges on health services research really. It depends on how you define research. If you’re talking about clinical research that might be different. I think it has a lot of overlap with health services research. I don’t know whether Mark thinks that’s the case or not.

DR. TANG: Let me just get three last short comments please and then we’ll going to go into the where we construct the hearing overlap.

MR. QUINN: Let me give a quick thought on where this fits in. With my previous employer in order to not pay $50 extra a month for health insurance I had to fill out a health risk assessment through a WebMD PHR. WebMD aggregated all those for my employer and probably provided them with a way of looking at health statistics for their employee base, different ways of slicing and dicing. All employers that WebMD supports use a big database. That’s functionality that could potentially be used to look at a big swath of Americans in a variety of ways. Healthy vet. My healthy vet that the VA puts on probably has similar functionality. The big question is what are the usage, limitations, applicability. How would that help support the goals of healthy Americans 2010 and 2020 and others? Just as an example.

MR. REYNOLDS: I want to go back to Blackford’s comment and I’ve read some of their documents. The whole idea is value proposition for the person, for the caregiver, for population health, and a reason to promote, develop and pay for this. Those are the things in the end to me. It’s meaningless if there’s no value profit. It’s meaningless if we don’t know what’s going to happen. I hope we’re just not running around. We have a new vehicle to crap up data. The value proposition to me is the one thing I don’t hear in any of the discussions and I know you want to hit too. That’s going to be the number one focus you guys are going to have otherwise people aren’t going to go with this.

DR. TANG: That’s a really good one that I want to put on this matrix which is is the value proposition in NCVHS matter. It’s clearly a matter for 82(?) for example but are we supposed to have hearings on the value proposition? Are we supposed to make any assessments?

MR. REYNOLDS: I’m saying it should be a thread in all of our questioning so that we understand that our recommendations would have some value.

DR. TANG: That’s a different way of looking at it.

DR.CARR: I think that what we’re hearing is a huge array of things. I think the value proposition is what guides our selection. If we go back to our discussions a couple of weeks ago we began with person centric. Just talking about a person responding to a survey isn’t person centric in the way we were originally talking about it. In going back to Carol’s comment earlier data should be a by-product of an experience that the person is having. The kinds of things I thought we had talked about that would be very novel would be these programs where individuals managed whether it’s their weight, their diet, their diabetes, their manic depressive disorder, whatever it is, and they keep their own journal. They enter in today I took a medication. Seeing a model like that that is really person centric that’s not a person providing information for somebody else but it’s a person who has their lived experience of what makes their day better and what makes it worse and what makes them healthy and what makes them unhealthy. Then examining that visioning the future how does that information then translate into population and other things. I think privacy is something that we address after as we get at what are we talking about. I wouldn’t start with privacy I’d start with show us how persons manage their health and then crosswalk to how does that become usable data and then how do we protect it and how do we populationize it.

DR. TANG: So as Harry predicted we failed this part of the discussion by excluding nothing from our purview. We’re going to part two and we’ll try to take the entire world that everyone wants to talk about it and divide them into four quadrants. I’ll read off the lumped version of what we just went on and see if we can’t put them in one or more categories and then see if that helps us in dividing the areas.

MS. GREENBERG: Did we hear from standards?

DR. TANG: Yes, we did. I had that listed. It came from Justine.

One topic is let me call it novel data sources and that would include things that could be entered in the PHR, things that can be gathered by gadgets that Justine just described, and other things that Carol would approve of. So novel data sources. Who can object with that? Where would you like to put it?

MS. GREENBERG: Where are you putting it into those core pockets?

MS. MCCALL: I have a recommendation on that. I think that if the topic were novel, intervention and data sources, then I would want to hear about all of those. I think that what we can do is that anybody coming in is that we declare certain beliefs and that given NCVHS’ role and our mission that we declare that we are interested in the security, privacy, quality and pursuit of health of data. Now we recognize data is exhaust off of processes so we care about those two. We’re hear to talk about data and how they intend to secure it, make it private, enhance quality for the measurement and pursuit of population health and individual health. We declare those things. We say okay. What are your intents around that and then we can have a topic around new novel stuff and they’ll have to touch all the bases in order to score a run.

MS. GREENBERG: I think that Carol is getting at what I think I suggested or someone suggested at the executive subcommittee retreat that we have some guiding principles. This is what Carol was suggesting is this idea of declaring. Some guiding principles around this topic which then I think could fit into what she was saying and let people who are coming in to meet with the committee understand what those guiding principles are.

DR. TANG: It looks like we’re jumping to the chase. One of the possible ways this was going to come out is that everything would fall in the middle and concern every work group, which may lead us to the conclusion of having an open hearing of the whole work group. Let me test that with reading off the topics that we went through and see if that actual construct works. One was the novel data sources. Another is the data flows in, out. Another is the privacy policies and practices wherever it’s contained and wherever it goes. Another is the context of health, sort of a funny way of describing the bucket that you mentioned Carol. There are the standards that cover these new data elements that center around the individual.

PARTICIPANT: Does that include taxonomies and ontologies?

DR. TANG: There is the leveraging and learning from the existing methods of gathering information about individual and population health, the methods, the surveys, the reliability, et cetera. Everything that Marjorie said. There is the implicit theme of value for each of these queries. There’s the lessons learned from existing experience. It was brought up in the context of PHRs. Then there’s the ongoing certification criteria, like CCHIT criteria and privacy. That’s probably a subset of the privacy concerns.

MS. MCCALL: I’d like to add one. Because I talk with a lot of these new companies all the time. It has to do with metrics. They will not simply have data and functionality. They will show and create metrics all the time. What is there intent around measuring quality and showing that to people? How will they know their measures are right? How will they know the measures are harmonious? Data has standards. Measures must have standards. We’re not really there yet as a country. What is their intent?

DR. HORNBROOK: To make money.

MS. MCCALL: What is their intent around measures and making sure that they are doing it accurately?

DR. WARREN: How are they going about harmonizing the measures to report quality indicators?

MS. MCCALL: For example, there is more than one company that will calculate your supposed age based on what they tell them. How old are you? Physiologically. It’s a metric. You can go out on any kind of site and it’ll say X and it will come up with that measure or whatever. Or you’ll put in a lab result and they’ll tell you that you’re sick. Where did they get that? They’ll tell you that you’re at high risk? Where did they get it?

DR. TANG: Of the topics that I listed everyone is comfortable saying that this crosses all the traditional boundaries? It’s having a full committee hearing.

DR. CARR: I’m struggling with your lack of lumping. I go back to if our focus, remember this is just a two-day hearing, if our focus is novel data sources and we anchor on that and then we say from what are the attributes whether quality, privacy, standards, populations. The things that you mentioned were a little bit all over. I really think that we should stay away from conventional fill in the blank submit data things. That’s not novel. I think that if we really want to get in depth vision of where we can be we ought to really go out and look at novel things and focus on that and then all the attributes of that and all the gaps. Not try to go back with the conventional PHR, the conventional submit to WebMD, or whatever.

MR. REYNOLDS: Let me call process check for a second. It’s getting late. We’ve already taken a lot of time from the other subcommittees.

DR. TANG: You gave us 45 minutes and we have 5 minutes to go for the 45 minutes.

MR. REYNOLDS: You weren’t as prompt starting as you –- I understand what time the world starts and doesn’t. The point is we cut those committees down quite a bit. I think that you guys still have the balls quality and you’ve got something to work with out of our discussion today and that’s what I’d like to make sure we build on.

DR. TANG: I wonder if we need to call to question whether these are separate hearings or if this is one 2-day hearing with multiple perspectives. I think Justine’s point is we construct a panel to illustrate the spectrum and diversity around the topic versus changing the topic I don’t think. I guess is it fair to call the question on this?

MR. REYNOLDS: Since you guys have the lead on this subject whatever you feel is the appropriate thing but we’re going to have some upset subcommittees if they don’t get a time to even spend a minute together.

DR. WARREN: What I’m unclear of is is the question that you’re calling is should this hearing be a full committee hearing, a quality committee hearing, or a task-force sponsored by quality but with representatives from the other three subcommittees?

DR. TANG: That can be the options. Those can be the options.

DR. WARREN: So there are three options?

DR. TANG: Yes.

MS. GREENBERG: Let me just say though as the executive secretary, I think that’s my role, that we do need to decide today or tomorrow before we go home whether this is going to be a hearing in which all the subcommittees want to participate and whether that’s appropriate or whether that’s desirable or whether you want to have a series of hearings or what. As you recall the budget as we know and love it at the moment allows for one stand alone, if we have no other meetings and we don’t a full committee meeting planned in January. This is a stand alone subcommittee meeting. Does it get ticked off for the quality or is it something that everybody is sharing? Maybe this could be the one hearing of the year and that would be it. I don’t think so. You’re right about that. Maybe it doesn’t have to be decided now but it has to be decided by tomorrow.

DR. BLAIR: I have an area of concern. The area of concern I have is we’ve generally had guiding principles about what we listen to and one of the area of guiding principles, at least in my mind, has been we’ve taken a look at where we can contribute in areas where -– I just thought of something which completely throws out my theory. I’m just going to close and turn it on to somebody else. Never mind.

DR. FRANCIS: I did get a sense that the ground was shifting a little when it went away from WebMD to novel sources of data completely. Supposed we go back to WebMD for a minute? Just to take that as an example. There’s going to be a standards question about that. What are the data standards? There’s going to be a privacy question. What are their privacy practices and problems? I think it would be a bad idea to go with the task force model because what that will do is cut out important subcommittee members. I would oppose that. We also have to be very careful of the people we want to have come because we can’t have a standards hearing one week in January and get the WebMD person here and then a privacy hearing a week later and get the WebMD person here. Part of what should drive how much is together is whether we want to talk with the same people.

MR. REYNOLDS: And again you’re using WebMD as an illustrative example.

DR. FRANCIS: Totally illustrative example and only because Matt raised it.

DR. TANG: Let me just do Bill and Walter and then I’m going to take a poll of the three options.

DR. SCANLON: There is an issue of logistics. I think that part of my concern would be that there’s a sequence here. The first question to sequence is what are we talking about. We haven’t answered that today. We’ve got this WebMD versus novel resources of data. There is the potential for interest on the part of every one of the subcommittees. In order to assess that you have to define more precisely, we have to define more precisely what we’re talking about and then decide how strong that interest is on the part of other committees and what their role is.

I’ll just speak for populations for a second. The idea would be that there are potential developments here that population is going to benefit from down the road but we don’t have to necessarily have strong involvement at this point. The involvement now from NCVHS’ perspective is really one of identifying the phenomenon, thinking about the privacy risk, thinking about the values of standards, and dealing with this and pushing this thing forward. We sit back and wait and then we pick up the benefits 5 years from now.

We need more of a definition of what we really going to focus on. What were going to hear from the initial presenters in terms of the content of the subject and then make the assessment. Leslie has identified if it’s a WebMD we already know enough about it that there’s some issues that we might want to pursue.

DR. TANG: Can you do your comment in 30 seconds.

DR. SUAREZ: I think my point is going to be very close to Bill’s. The reality is are we looking at the person-centered from the four perspectives that we’re looking at there? Are we looking at person-centered from the quality perspective and the other perspectives conjoin with one or two questions and not make this a four-prong because if we do it that way the person or people that would have to come to present are going to be more than one from each of the invited guests. We have to decide first are we focusing this on person-centered but looking at from a quality perspective and then asking the question about quality. Then the real issue is what is it that we’re going to ask them to present. Bill’s question. What is it that the question is to them? Talk about fill in the blanks in your presentation. Once we have that we would understand whether the fill in the blank includes talking about your quality perspective and issues around person-centered or does it include we want to know also our standards and privacy.

DR. TANG: If I could get a straw vote on four options.

PARTICIPANT: And your straw vote is not binding. Tomorrow we will make final decisions.

DR. TANG: One is a full committee hearing. In what you just said it is about person-centered health and we get four perspectives on that. Two we have four different hearings that overlap or some subset of that. Three is we reform an ad hoc task force which was Judy’s suggestion. Four is we have it with the three perspectives and throw population to clean up with the benefits later. Just as a straw vote: one, two, or three?

(People around the room giving their vote)

DR. CARR: Can I just clarify? What’s three?

DR. TANG: It’s like the secretary use an ad hoc task force, which is representatives from others.

DR. CARR: There isn’t a choice of quality, have it and everybody join if you want?

DR. FRANCIS: Since we didn’t talk about that though can I make a point about that which is that if quality does it they can’t structure it in such a way that it makes it difficult for others to ask their questions because at least the version that I saw while there was some comment about privacy in the discussion, there was no actual mention of privacy of building it in in the actual plan. We just need to be careful.

DR. CARR: I think that that’s fundamental. If we are trying to serve all masters in one thing then we ought to have the full committee hearing and having everybody present. If we are trying to learn in depth about novel data sources that enhance the quality of health, we may go in depth and get a description, bring it back, and then have a discussion in the larger group about the kinds of questions that that’s raised. That’s what I’m advocating for.

DR. FRANCIS: My only worry about that was that the hearing that I saw looked so much like the hearing that we were thinking of doing.

DR. CARR: But what we’re talking about today is what is on the board at least that’s the one that I’m voting for. That we have a novel in depth understanding from a quality perspective and once we summarize that come back and talk about what are the other implications.

DR. TANG: I’m deliberately obscuring the current vote. Does anyone who voted for number 1 want to change their votes to number four.


DR. TANG: There’s one change. Is there any other change?

MS. GREENBERG: Could number four include maybe a stronger involvement by the privacy subcommittee than by the other two.

DR. TANG: What I understand is it’s a quality led hearing and there’s no prohibition. It’s a collaborative one.

MR. REYNOLDS: I think there is a prohibition on who comes otherwise you’re back at one.

PARTICIPANT: Not who comes but what you ask. What is the focus of the questions?

DR. TANG: Where did I leave off? Garland did you vote? I think you did. You voted for Carol. By a wide margin of three, seven to four, the straw nonbinding vote is to have a quality led hearing with more limited participation by the other groups but a collaborative input process to determine the hearing panels and the questions.

DR. BLAIR: On that note the delegation from the standard subcommittee would like to indicate that since we released the remainder of our time to this topic that the quality work group owes us at the next full committee meeting.

MR. REYNOLDS: All right we have the vote. Everybody is going to have their breakouts. When we get back tomorrow the first thing we’ll do is make sure anybody has a problem with this. If there’s any big issue with this after your breakouts.

DR. TANG: And that one will be binding.

DR. CARR: It does impact how one structures one’s quality subcommittee.

MR. REYNOLDS: You should assume that that is it unless somebody comes back and goes –- just find something that’s totally unacceptable. That’s where I’m going.

DR. WARREN: I have a question. This particular hearing that we’re having as qualities is it still covering the same content that was passed around on the agenda this morning?

DR. HORNBROOK: I’m bothered by the whole PHR issue in terms of human behavior. We have know for a long time that doing a health diary and a food diary in particular is the best way to lose weight. We keep finding that over and over again. It’s a very well substantiating finding. Who in the world needs to lose weight in the United States is doing food diaries? We’ve got one.

MS. GREENBERG: I read that article and I kept one for one day.

DR. HORNBROOK: My point is if you’re going to motivate PHRs based on the ability to do food diaries you’re not going to get any groundwork off of that at all except for a few marginal people who are very highly motivated, highly educated.

PARTICIPANT: And we love them because they do research with us.

DR. HORNBROOK: I have no motivation to do a PHR unless I’m going to travel to an international country and I would do it very temporarily as long as I’m out of the country.

PARTICIPANT: That’s the whole reason for add and the value proposition in because if you can’t get to that and that’s why –-

DR. HORNBROOK: I can’t see any value proposition at all. I don’t know where in the world Microsoft is getting off with health –-

PARTICIPANT: You had three emails this morning you said.

DR. HORNBROOK: I am inside an integrated health system where it makes sense.


Subcommittee on Populations

DR. STEINWACHS: Why don’t we just go around the table and do introductions quickly. We’re going to have to abbreviate the agenda some but I think we can do that and be able to make our target time.

I’m Don Steinwachs, Co-Chair of the subcommittee and a member of the committee.

DR. SCANLON: Bill Scanlon, Co-Chair of the subcommittee and a member of the committee.

MR. LAND: Garland Land, member of the committee and subcommittee.

DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente Northwest, member of the subcommittee and the committee.

MS. PAISANO: Edna Paisano, Indian Health Service, a staff to the subcommittee.

DR. BOENNING: Doug Boenning, ASPE, staff to the subcommittee.

MR. HITCHCOCK: Dale Hitchcock, ASPE, staff of the subcommittee.

DR. CAIN: Virginia Cain, NCHS

MS. GREENBERG: Marjorie Greenberg, NCHS, CDC, and Executive Secretary to the committee.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, committee staff.

DR. SCANLON: It’s great to have everyone here. I apologize that we didn’t quite keep the schedule because a full meeting of all the subcommittees. The first on our agenda is to review and adopt a charge for the subcommittee and Debbie and Marjorie is probably involved too and very helpful in trying to update the charge that existed before. I think everyone has a copy. There’s a four-page handout, page two. If you would take a moment and read through and remember that a charge is supposed to give people a sense of what we’re about but probably not be too constricting in what we do.

MS. JACKSON: We wanted to make sure to notice your charge in looking at the other subcommittees as well. One of my tasks would be to help in the stylistics so they would look kind of similar. In the spirit of collaboration we wanted to make sure that the subcommittees recognize as from the exercise you just went through, there’s so much overlap. There’s a lot of collaboration. Looking at yours and making sure that fits where the direction for your subcommittee is one thing but we did provide all the subcommittees with everyone’s charge so they can see where they fit in the context for the full context for the entire full committee.

DR. HORNBROOK: Am I missing something here on the subcommittee charge? Is there anything in here about disease risks? I don’t see that term anywhere. It seems to me as a population assessment our task would be of interest in looking at people who have genetic risks for disease, people who have behavioral risks for disease, people who have an insipient subclinical disease, which could be detected by certain kinds of mathematical models laboratory-based models. There’s a lot of data about where you are in terms of health on a trajectory that could be part of our charge too.

DR. STEINWACHS: Maybe to expand it. Right now the entry sentence talks about accurate, timely relevant information of the health of American people enables. It talks about the identification of health problems where there is risk.

DR. HORNBROOK: We’re finding more and more that you can identify pretty good risk models. The probability of predicting something is more than 3 percent. We’ve got some models that can predict at 99 percent.

DR. STEINWACHS: So maybe it enables the identification in assessment, of risk problem, of health problems.

DR. SCANLON: Health problems and risk, identification of health problems and risk.

DR. STEINWACHS: Identification of health problems and risk are good.

MR. LAND: We don’t have any mention here about vital statistics.

MS. GREENBERG: I would say the same with specific vulnerable groups in the population with particular problems or risks. People are vulnerable often because of risk factors.

DR. STEINWACHS: Okay, we can put risk there too. Garland was mentioning we don’t say anything about that bears on vital statistics.

DR. HORNBROOK: Births and deaths. We should be including that on our charge shouldn’t we?

DR. STEINWACHS: I’m sorry.

DR. HORNBROOK: We should be including births and deaths in our charge.

DR. STEINWACHS: I like the birth part but the death I don’t know. (Laughs)

DR. SCANLON: What about putting it in “A” under the subcommittee focus is both on population-based data concerning US, we shouldn’t say population twice, population-based data such as vital statistics and health survey information.

DR. STEINWACHS: Okay, such as vital stats and health surveys.

DR. HORNBROOK: Just to be a stickler for detail, do you care about genetic data? There are active genetic registries out there that are population based although they are. Some are consent based and some are contract based. So Vanderbilt is doing a genetic repository and genomic analysis on every single patient that comes through Vanderbilt.

DR. STEINWACHS: I was just trying to think if we expand such as vital statistics, health surveys, and then we have the health examination survey which actually also includes genetic information.

DR. SCANLON: And the such as was meant to illustrations not an exhaustive list.

DR. STEINWACHS: Other comments, suggestions? Marjorie.

MS. GREENBERG: Well, when Debbie I guess is harmonizing all of these there has to be something about this is kind of background. There has to be something about that maybe will prioritize topics within these broad areas and make recommendations. I think the one before the standards as something like that. The charge has got to not only say what the scope is I think this does a pretty good job of covering scope which is broad obviously but also then what the committee’s going to do. Not do in the sense of a work plan.

DR. STEINWACHS: We could lead off. I don’t know if it’s appropriate to say but the subcommittee advises the total committee on policy and strategies for accurate timing and relevant information or something like that.

MS. GREENBERG: Not just information but population health information.

DR. SCANLON: There’s an inconsistency -– between standards and privacy and qualities as the two versus the one and then sort of us. I thought at the executive subcommittee meeting that the idea of the standards and the privacy this long list of tasks was something that we said should be in some kind of work plan as opposed to a charge. That maybe what you’re talking about from us is something to parallel the last paragraph of quality which is to say, and you don’t have to necessarily say in 2009 and 2010, it says something about current focus may include and a short list like that. I thought we were aiming for a charge that could be used more than 1 year.

MS. GREENBERG: Yes, the work plan is usually what mentions what you’re doing this year or the next 2 years. You don’t want to spend the whole time on it. The quality one was very long before us so this is what they have come down to now. You could have your two paragraphs and then have a third or something like these two paragraphs. I don’t know if you need to name all of this stuff you’ve done in the past. Then have a last paragraph about in 2009, 2010 these are the areas you’re going to address.

MS. JACKSON: Future topics included.

MS. GREENBERG: You can keep changing that paragraph but always keep the ones above or something if that’s like what the privacy is doing.

MR. HITCHCOCK: I have a problem with that last sentence in the last paragraph. It doesn’t make a lot of sense to me. The subcommittee has the state cross cutting advantages as reflected in subcommittee’s current themes of interest with letters, reports, and hearings. It doesn’t make sense.

MS. GREENBERG: I think you could put this sentence about population health principles serve as the underpinning for … That was certainly agreed to in the past for all the work of the national committee and the full committee’s committed to incorporating that mission throughout all NCVHS activities. The subcommittee on populations takes particular topics or something related to whatever up here and pursues them. I think there was also an agreement that everyone’s charge was going to say that you coordinate with other subcommittees on particular topics.

MS. JACKSON: Susan and I will do that.

MS. GREENBERG: That was in the minutes. So they’ll all include something like that.

DR. STEINWACHS: Why don’t we do this? Why don’t we take Dale’s suggestion and drop the last sentence of the second paragraph and after the population health principles indicate about the coordination, that this committee coordinates with the other committees.

MS. GREENBERG: On that population health focus you coordinate with them but then also as a subcommittee —

DR. STEINWACHS: You’re making a statement that essentially what we do underpins broader activities as such the populations subcommittee coordinates and works with the other subcommittees.

MS. GREENBERG: But then also as a subcommittee you’ll have specifics.

DR. STEINWACHS: That’s above in the first paragraph. We were going to have a third paragraph with what we were currently working on.

MS. GREENBERG: Actually that would probably be of more use to people if they wanted to look at your charge and see generally what your scope is and then in one paragraph, not a long work plan, but in one paragraph what are you doing in 2009, 2010. I think if each one of the groups did that that would be good. Then you should change that paragraph.

MR. HITCHCOCK: And I think it’s okay to say how the subcommittee accomplishes its business through hearings, letters, and reports.

MS. GREENBERG: You need that. The how.

DR. SCANLON: But if we drop the last sentence in the second paragraph we lose essentially all the current work. My suggestion might be to take the in its rich history, start that as a paragraph.

MS. GREENBERG: Which one?

DR. SCANLON: In its rich history the subcommittee has explored. Make that the second paragraph. Make the first sentence of the current second paragraph and move it up into the first paragraph.

MS. GREENBERG: I would agree.

DR. SCANLON: So that the first paragraph is kind of stage setting and the bit about the generics of the subcommittee then in its rich history we can do a little bit of a merger. I wouldn’t put everything here but a little bit of a merger of these more historical topics that we’ve focused on along with some of the more current ones and make that the second paragraph. Then the third paragraph would be our 2009, 2010 topics.

MS. JACKSON: Could we revisit about putting the dates in there. One subcommittee has the dates. The other one’s just kind of going future topics and you don’t date yourself that way.

DR. STEINWACHS: Debbie, do you think you have enough?


DR. STEINWACHS: Any other suggestions on this?

MS. GREENBERG: So there will be a scope paragraph, sort of a history paragraph which will also talk about how you function by holding hearings and writing letters and reports and making recommendations. Then a third paragraph about 2009, 2010. Actually what they are going to do in this year.

MS. JACKSON: To make it consistent I will look and see what the other subcommittees are doing.

DR. STEINWACHS: Since we’re trying to compress the agenda, Larry’s not here, but Matt Quinn is here. I thought maybe what we could do is just have a very brief description of our plans regarding next stages on the medical home and this tied to working on the medical home use case, divide that. We also agreed that we were waiting until after the quality group had their hearings to see if we wanted to modify the strategy of where we’re going with that. Matt, could you take about 5 minutes and run through the thinking you and Larry have been doing?

MR. QUINN: Yes. I see this as somewhat related to what we were talking about with both the previous discussions with AHIC’s successor here as well as what we were talking about with novel data sources and novel ways of consumers managing their health information. We had very productive hearings in May that helped us really set the stage for understanding what a medical home is, how to measure its existence, how to measure its performance, how to measure whether it’s having an impact, and looking at data models and information flows inside of it. Really this project around medical home use cases would drill into the data model around a medical home and then turn that into something that better defines what a medical home is and how it functions.

Today the medical home is defined at a very high level by the primary care organizations that came together and said that it has to have these principles. Those are at 50,000 feet or higher. It’s defined very tactically or structurally by the NCQA PPC-PCMH tool which defines it as you get five points have an EMR and you get three points et cetera for this and that. Somewhere in between the definition of a medical home is defined by how it behaves and how information flows among stakeholders in it. Dr. Michael Klinkman(?) at the initial hearing led the gentlemen from ONC who was there to an aha moment when he showed an information diagram and said here is some of the ways that information flows in this model. He said wow some of those are already use cases that we’ve already developed and HITSP is already working on in terms of ONC activities. Somewhat confusingly ONC put out a use case recently for a medical home. It really just focused on one very small aspect of it.

MS. GREENBERG: That aspect was?

MR. QUINN: That aspect was shared use of a clinical data repository or single database by multiple people managing a complex patient, a comorbid patient. Just one small piece of this. It really gets to the fact that a medical home is a series of data flow. Some of which are well documented. Others of which are not. Helping folks like AHIC’s successor, ONC, and others understand and define what those data flows are and which ones are the highest priority. It’s a series of steps that starts with documenting, building off of our previous testimony on information flows and entities and a medical home data model or information model. Creating some first person narratives around those information flows describe actually what people do. I emailed my doctor and he emailed me back with a time that he can come see me. Those sort of things. Some of which are actually captured in today’s use cases. Others of which are not.

Looking at where current use cases fit, where they are not and where are the gaps. Then prioritizing those gaps with some sort of process. Probably with recommendations to AHIC, the successor.

MS. GREENBERG: Now when you make a recommendation it sounds like you have to bring money with you.

MR. QUINN: Yes, you have to bring $50.

MR. STEINWACHS: That’s why we have to send our recommendation of the secretary. We send that with the money.

MR. QUINN: The benefit of this is that it helps frame the medical home as a concept that is neither exoteric nor purely structural but behavioral. It also helps frame medical home as a care delivery model as a series of use cases that ONC and in AHIC the successor and the public at large can get their arms around. As we look at what are some of the things that we can do around this, I think it starts with bringing together some of the people that we had for the initial hearing and drilling down on that information model, building it out a little bit as well as pulling from existing literature and other sources to describe those information flows. I put together a presentation that we talked about a little bit last time on some of those information flows just cataloguing them, creating stories around those as some of our previous testimony people did. Then putting in place a way of assessing how well those are currently supported by current use cases, what’s on the horizon for 2009, et cetera. Then saying okay here’s what we have. Here are the gaps. Let’s figure out what’s most important not so much in the framework of the NHIN as a broad concept, but in terms of if we want to have a medical home delivery model in primary care, here’s what we need to build out.

DR. STEINWACHS: I think the next steps is one is we’re expecting they’re going to be some quality group or group hearings in January. As a kind of follow on to the medical home or things that came out of that medical home discussion and hearings. Then at that January meeting we would discuss where do we go next? The use case idea had been one that Jim Scanlon has sort of put forward as the way to focus but I think the real challenge for us was how to focus on something that would be useful to do. We talked about data content, the kinds of data that ought to be present in a strong primary care medical home practice.

MS. GREEBERG: I don’t think the quality hearing or the one in January is going to have that much to do with the patient-centered medical home.

DR. STEINWACHS: It’s unclear to me what they are going to do. I think we just need to wait. They originally talked about the content of health information needed for person-centered health at which a piece of that would go into this idea of what would also a medical home needs.

MS. GREENBERG: They seemed to have moved away from that.

DR. SCANLON: I think they narrowed it. The issue would be that both in thinking about how HIT can help in terms of health, both electronic health records and personal health records, both have a role. They seemed to have narrowed onto the personal health record with this first hearing. It maybe that there isn’t overlap. We were planning on it before.

MR. QUINN: The way that I would look at this in relation to that and maybe this is just in my head because I’ll probably write the agendas for both. One of the by-products that number one that one of the areas where information flows and the information model is not well developed or documented in terms of both use cases that exist today. Or current information models is the way that people, patients, consumers, how ever you want to describe them, are managing themselves, working with other people and patients and their doctors directly outside of a clinical setting, working with community resources as part of this. That really plays a big role in the medical home. This is less about an area I suspect that we’ll find that there’s a lot of already built out use cases as it relates to electronic medical records and use of those in the practice and sharing perhaps with other practices where there will be less that we will find is how consumers interact with their medical home provider, other providers and other consumers in community resources and how that is integrated into the model. The by-product or the steam of this information model, some of it can be used to measure population health, the health of the nation. Some of it because of limitations that deal with security or privacy or data models or data standards won’t be useful. I think that’s where the two come together.

DR. STEINWACHS: I’m going to keep us moving along, but Matt thank you very much and thank you for the work you and Larry have doing.

MS. GREENBERG: You’re just putting this on hold?

DR. STEINWACHS: I’m putting it on hold in terms of actually scheduling something.

MR. QUINN: If I were to guess I think January is too early for the other quality hearing and that’s probably going to more in March.

DR. STEINWACHS: We had originally talked about our follow on to the medical home being more in the spring time too.

MR. QUINN: I think that this is really relevant work.

MS. GREENBERG: It could be useful. It could serve a useful purpose.

MR. QUINN: I think that part of this is going to be that one of the things that we understand in the concept of novel data sources for this is what tools are out there for capturing and collecting data from consumers among other sources.

DR. STEINWACHS: That’s a place to put them in the electronic health. Mark?

DR. HORNBROOK: This was before my time so I want to check. When you talked about medical home are you talking about functionality not structure?

MR. QUINN: That is it exactly. Today whether someone is defined or practice is defined as a medical home is largely measured structurally. CMS is medical home demonstration and many other medical home demonstrations going on today are a practice is assessed as a medical home of one level or the other based on structural characteristics and some process. What I hope and I think is a better definition for medical home is how they behave. I know that I belong to a medical home if I can email my doctor or contact my doctor and I get information back outside of business hours.

DR. HORNBROOK: Do you include faith healers and chiropractors, and natural paths in your definition of doctor?

DR. STEINWACHS: Before we go too far there’s been in the hearings a concern that a medical home isn’t really all a primary care needs to be. We started out with the recognition that we’re using medical home as a broad concept but indeed it needs to be strengthened. It did bring us back essentially good primary care. What’s the data model that supports that was the fanatic question and then in the context of HIT the Kaiser experience and others would help us.

MR. QUINN: To answer your question I think that today entities that generally primary care and a healthcare entity that acts as the gateway to the healthcare system is serving as a primary care medical home. That could be a primary care doctor, a family care doctor. It could be nurse practitioners. It could be a mini clinic. It could be a cardiologist or a nephrologist or an oncologist. I think that really is a better definition. How it functions is a better definition than check and blocks on structure.

DR. STEINWACHS: I want to move along just because I think we get into a whole other discussion about subspecialty based medical homes and whether they can really do the job.

MS. JACKSON: Process-wise we’ll just have continued conference calls between now and February meeting generally.

DR. STEINWACHS: Let me take you to the next thing on the list is vital statistics coordination with NCHS-ESC panel and I’ve got Garland’s name by it because he volunteered in absencia and maybe it’s also Bill.

MR. LAND: I tried to get a hold of Steve Swartz who’s the chair of the BSC committee and he wasn’t available to talk. Unless Virginia knows I don’t know that they have done anything yet.

DR. CAIN: No. We’re further behind on that with them we’d like to be. We’re just starting to try and get some dates to get a conference call on the committee. We’re aiming to have something to say for our January BSC meeting but at this point there’s nothing there.

DR. STEINWACHS: When is your January meeting? Do you remember?

DR. CAIN: Yes, I do remember and there lies a problem.

DR. STEINWACHS: Same time as ours?

DR. CAIN: No. We’re currently scheduled for January I think it’s 22nd and 23rd when the hotel rooms are $700 a night. We’re exploring different options. There are some hotels around. We’re looking at that. We’re looking at changing the date or week or having it out of town. Those seem to be the three options. Right now it’s on for the 22nd and 23rd.

DR. STEINWACHS: So Debbie when are we meeting again the full committee? Is that in January or February?

MS. JACKSON: Very end of February.

DR. STEINWACHS: We’d have feedback, Virginia, on where things on so why don’t we follow up. Marjorie, not everyone was here to hear your description on where we are and Debbie’s on revisiting the vision for health statistics in the 21stcentury. Do you want to give a brief summary of where we are on that in our plans?

MS. GREENBERG: We have agreed on a two-phase vision or hallucination or whatever. Phase one is going to be in fiscal year 2009. Gip Parrition(?) and Dan Friedman(?) who worked on the original vision, 21st century vision for health statistics, actually we’ve invited them tentatively to the February meeting of the full committee. We’ll be contracting with them to revisit the vision in a paper and pencil and literature review and selected telephone or if they happen to be in the same city with these people, in person interviews or conversations with a selected group of people. I see this project under this subcommittee. It’s a full committee project ultimately but I see this subcommittee as being the caretaker for it. I would think like that would be something that this group should be very involved with, working with them and identifying whom they should talk to and what they should talk to them about. It will be a selective revisiting of the vision looking at the impact of health IT since the vision was completed and how that might impact on the organization or data sources and other approaches for population health data and health statistics. And looking at the influences on health that Carol was pointing to again that’s on my poster there and the extent to which there are gaps which of course there are a lot of them. Then using that to make some recommendations about how the vision might be revised and doing a white paper very closely with the subcommittee that then could be the basis for some one or more hearings or workshop like a year from now to get feedback on it. There’s obviously an important state and local component to the vision as it was originally developed into the whole area of how statistics. I think we’ll really look to you also. That’s why the subcommittee is the right place. Our idea was that they would come to the February meeting and engage the full committee somewhat on the whole thing and then meet with the population subcommittee.

DR. STEINWACHS: We ought to devote our subcommittee meeting to primarily that discussion.

MS. GREEBERG: At least part of it. We’ll have to see how we do the agenda. I think to make it efficient we will want them to both meet with the full committee and meet with the subcommittee on the same day. It probably be that first day.

MS. JACKSON: They organized a pretty aggressive agenda and so we’ll be looking forward to using the subcommittee to bounce things off of, calibrate where we are to stay on track for phase one.

DR. STEINWACHS: Are there any questions or comments about the process? We’ve been talking about it for a while but I really thank Debbie and Marjorie getting something down on paper. Ed Sondik I think was consistent with what Ed was suggesting and showed enthusiasm for it. I thought finally we had a way to move and budgetarily we were trying to keep it at a level affordable. We had a few constraints.

MS. GREENBERG: For spreading it over 2 years. You’ve got this potential January meeting of the board. When is the meeting after that? Whenever they do meet again, Bill as the liaison, you could give them a heads up that we’re obviously going to want to engage of the board on this as well.

DR. CAIN: Our meeting after that I think is the beginning of May.

MS. GREENBERG: Anyway we certainly want to engage the board. We, and Dale since you’re hear and ask you, haven’t really thought about is the original vision was definitely done with a data council so I think we should probably at some point in this phase one meet with the data council too and let them know what’s going on.


MS. GREENBERG: But I’m glad that we’re well ahead.

DR. STEINWACHS: Thanks to both of you. You’ve translated all our discussions into action and that’s always gratifying. Dale and I guess others along with Bill have taken the hearings by the hand and led us to them. Do you want to say a few things about what’s planned in the hearing tomorrow afternoon since you’re the father of a good part of this?

MR. HITCHCOCK: I think it’s going to go well. We’ve got some real great speakers, a lot of enthusiasm, a lot of interest in this meeting. We’ve got off to somewhat of a rocky start. People really weren’t sure what we were asking them about but I think we’ve laid their concerns pretty much. Personally I do have two concerns. Bill brought this to our attention early. This is a very full agenda, a lot of people we’re going to have to keep an eye on the time. The other thing that scares me a little bit is we’ve got a room that’s relatively small capacity. I hope we can fit everybody in. There’s nothing we can do about it. We’ve investigated every other source.

MS. GREENBERG: One thing we should do is all get there early so there’s room for us.

MR. HITCHCOCK: Well, yes. We could do that and hope that there’s room for our guests and their guests actually because we’re getting people from different offices and organizations that also want to come and hear.

MS. GREENBERG: Which room is it?


MS. GREENBERG: Like one of those breakout rooms.

MR. HITCHCOCK: It’s a long rectangular room. Actually it could fit a fair amount of people if we can get the right number of chairs for it. There are rules about how many people can be in a room. They sort of allocate the chairs. It may work out okay. Who knows?

DR. STEINWACHS: Sometimes you can steal chairs from another room, unofficial activity.

MR. HITCHCOCK: The other rooms are usually locked.

MS. GREENBERG: It will be transcribed right? But it’s not going to be broadcasted.

MR. LAND: I guess I missed something. I didn’t know where did this hearing come from?

DR. STEINWACHS: Garland, if you don’t watch out in this group. Let me just give you the background. It was at our last full committee meeting and the subcommittee meeting that we got into a discussion and Jim Scanlon in interactions with Bill and others around the concept of health information to support health reform. That since we know that lots of people are going to be looking at, they are looking at now, but looking at more in the next year or so health reform issues. What population subcommittee might do with the whole committee but really the population subcommittee might do is look at the adequacy of data and information we currently collect, support health reform in terms of being able to identify trends and changes particularly this focuses on extent of the uninsured and access issues. That gets you into also the under insured, the length of time people are uninsured, and our ability to make state level estimates of uninsurance and not just nationalists.

MR. LAND: This isn’t data coming health insurance plans.

DR. STEINWACHS: This is the data that comes out of federal surveys and other activities.

DR. SCANLON: I think we’re going to hear a little bit about some administrative data too. I think it’s the treasury people and the CBO people and even JAOs. We’ve talked about their use in the issue administrative group as well. When they go solve a problem they need to grab what’s available.

MR. HITCHCOCK: There’s interest in measuring and monitoring the issues that Don was talking about over time and particularly looking at what happens in times of economic down turn. We know that people all the time put off going to the doctor for various reasons and even in good times. But happens in economic down turns. We read in the newspapers about fewer prescriptions are being filled. People are putting off visits to the doctors. Employers are going to raise deductibles rather than the premiums. That sort of thing. We’re hoping to hear about those and our ability to measure and track those issues as well as just who’s insured and who’s not.

DR. SCANLON: My memory may be wrong but maybe the reason that you didn’t hear is because Jim may have raised this during the executive subcommittee half day that we had.

MS. GREENBERG: Yes, the half-day and then you all met with him separately.

MS. JACKSON: There was a hinting in something earlier than that in the September meeting because you have been organizing this from the data council. They had a session.

MR. LAND: I just misinterpreted the title. I was thinking this was in terms of data coming out health insurance plans. This is something completely different.

MS. GREENBERG: This is population or survey data.

DR. SCANLON: The reason I brought administrative data up there when you said that because if we could get data from health insurance plans it might be very desirable. The other thing I would add to this is when we had the executive subcommittee meeting in October that Sondik was talking about of thinking of the future of how we may want to have a data strategy that’s not totally reliant on survey. Because in part we’re facing these budget issues with effect to surveys but there’s also there’s the issue we need a whole richer set of data sources than the surveys have allowed us to have in the past. Thinking about both current administrative data and data that are going to be possible because we have more HIT out there is something to think about for the future. The point that Dale brought up about over time is important here because in some respects while we can use the word health reform as the motivator the health reform debate has already started. There’s a hearing tomorrow. Senator Baucus has issued a plan. The lead-time for generating data is passed for most of this debate. The interesting thing about Senator Baucus’ plan is that it’s not everything specified. It’s saying that we’re going to work through phases in terms of when we get more information about something and we can design a feature then we may implement it. There’s a question of what are the data needs to be able to inform those kinds of decisions as we move through time in both designing various reforms and provisions as well as monitoring how they work over a longer period of time. This is really potentially the start of a whole series of things that we build up in terms of adequacy of information.

MR. LAND: There’s a whole other movement going on called the alliance for healthy America or something like that. Healthiest nation that’s it. It started with CDC and NACCHO and ASTHO and now they are getting hundreds of different organizations to sign on as being part of that alliance. One of the principles of that group is that even if we got everybody’s health insurance it wouldn’t necessarily make us healthy.

DR. STEINWACHS: Sad but true.

MR. LAND: It seems to be that we need to somehow be paying attention. That is really population health. Here we’re focusing on health insurance and I think sometimes we need to remember the broader picture rather than what the politicians are focusing on is health insurance but we’re concerned about health. I don’t know where that leads but I just wanted to say it.

DR. STEINWACHS: I think it’s good to keep reminding us that we need a balanced agenda here. You’re right. Health reform is really healthcare, mainly health insurance reform.

We’re excited and Dale thank you for all you’ve done to make this a reality.

MR. HITCHCOCK: Roschita Dorsey(?) who works for me really did a major work on this and has done a good job. I’m really pleased that we have her in our group now.

DR. STEINWACHS: Interacting with her on the email and I’ve enjoyed it.

There are a couple other things before we adjourn. I’m trying to make sure we adjourn on time, which means 5 minutes. I just want Mark maybe to say a few words and thoughts about where do we go with the CTSA. I thought the presentation was useful and the dialogue and in one sense said well it’s early in the game and the other said now is the time to get involved if we want to get involved.

DR. HORNBROOK: Dr. Jody after she finished before she went home. She doesn’t want to hear and nobody at NCRR wants to hear about money because they have been pushed on money from day 1. They get sick and tired of hearing about money. She did suggest though that we have ideas that want NCRR to do then we should write a letter to Barbara Alving and sign it from all of us who are interested in having that happen. The logical connections could be some sort of meeting with a selected set of CTSA participants around community engagement would be my best guess who would be most sympathetic. We don’t need to engage the basic scientists right now. We aren’t going to deal with clinical trials right now. The population scientists are the ones most likely to deal with any you may want to pick out either one of the consortia that she pointed out, the regional consortia, or just hand pick a few to talk about plans for informatics development around connecting their communities informatically. The CTSAs are being held accountable for showing that their translation of research findings and the practice will have a health impact in their communities. That can be something like a health survey where the participants tell you that they are doing feeling better or doing better or it could also be health statistics where you actually get morbidity and mortality data and also quality of life data. There are people in the CTSAs who are worried about designing health system evaluations who are interested in statistical systems. We can sort them out. They are going to be the major leaders in health information systems and health services research. That’s whom they got to put into their CTSAs. It’ll be a bunch of people we already know which is not bad.

I think there is an important symbolism for both the director of NCHS and the director of NCRR to show the two agencies have some sort of visionary process going on to connect this translational research effort to translate the nation’s health statistics in some way. You and I, Don, represent people who are actually on the bridge, this important bridge that we could probably put together a few people to begin doing some telephone conference calls or something to begin talking about the project that would be something that both NCHS and NCRR could come and be sponsoring. It doesn’t have to be a big thing. It could be just a task force meeting or it could be something more like a demonstration project where you pick out some community network to study for their feasibility of contributing to national health statistics. You add on a community network sample in place of or in lieu of the BRFSS sample or the mental health national interview survey sample. When can you start supplementing and replacing? Obviously people want to cut statistics budgets down so you better have a better way to get the data rather than just giving it up. Am I making any sense here?

DR. STEINWACHS: Let me just as an idea and see what you think. I think Harry was thinking that maybe three or four of us ought to talk some about this and maybe come up with a page or two. I think it would be great to have something to share in writing and then have a conversation with Ed Sondik and others and say how does begin to shape an idea. I think your suggestion was that if Ed’s comfortable with it then the idea of bringing together NCRR and NCHS and sort of a small group discussion might be the first step I think you were saying. Maybe that leads to the second step. Maybe we ought to have investigators involved in that step too. I don’t know. Maybe we could do you and I might start and draft a page and then maybe some possible steps and we could circulate that and get it moving.

MS. GREENBERG: Maybe I missed something or I’m not really familiar with the NIH way, but it seemed odd to me that there was no effort to have whether it be electronic health records or any of the data be particularly adherent to national standards.

DR. STEINWACHS: It’s investigator initiated.

DR. HORNBROOK: You just tapped into the big culture gap.

MS. GREENBERG: I said this in a very naïve way kind of intentionally. Did I miss something or is that the case?

DR. HORNBROOK: You haven’t missed anything. It turns out that there was a huge vision this part of the CTSAs that there would be a national informatics committee who would be working on national standards for clinical trial data so that we could make sure that every clinical trial collected the same set of demographic variables, the same set of biological variables, so you could then pull data across clinical trials to get better micro level meta-analysis. Then of course there is the whole issue of finding patients for clinical trials. The vision was that the informatics people would put together standardized data sets, specifications, so that you can screen millions of patients to see if they are eligible for trial presumptively and then present the trial to them at the time they come in or exit call them or send out a letter. That was part of the vision.

The other vision is the community data systems would be integrated and made interoperable so we can look at the federally qualified health systems, Medicare, Medicaid data, hospital data, and put it all together on a national basis because the CTSAs provided an informatics backbone for the whole country.

That was the dream. That went into everybody’s proposal it turns out pretty much in that way. Then they put the informatics committee together and they met. They started to thinking we need money to do this. The NCRR said there’s no money so they decided to go home.

There’s a political impasse right now with the professors of informatics in this country. Their ethical responsibility is to the country in helping to design health information systems. They are refusing to do it until they get paid directly by NIH. We’re being held hostage in some sense.

MS. GREENBERG: But they are expecting them to do it on a volunteer basis?

DR. HORNBROOK: No, they are expecting them to be clever at doing it on the margin by folding a lot of the cost into the cost of healthcare. Kaiser has not been paid the $6 billion out of any ancillary money for the rest of the medical record system. It’s gone in out of our premium dues. We have taken healthcare dollars out of the current premium revenue stream and put it into high IT development whereas the rest of the world isn’t doing that except in special places. Most of the time physician groups can’t figure out how to get enough money together to buy the clinical record system for their practice whether they are 2 person or 200 people.

MS. GREENBERG: So they convened a group …

DR. HORNBROOK: Professors and informatics with a chair who happened to be the chair of informatics of OHSU, Oregon Health and Science University, and they just blackmailed the NCRR.

MS. GREENBERG: That was the end of it.

DR. HORNBROOK: It’s in impasse right now. It’s not the end all.

MS. GREENBERG: It really was a vision of having standards.

DR. HORNBROOK: Yes, there still is. It’s still going on. NCI is pushing it through caBIG and of course institutes are interested in piggybacking on caBIG. There was a notion that caBIG would be morphed in CTSA in becoming disease big, not just cancer, but health bioinformatics grid. We have a total national model of clinical trial database and population sciences databases. The work is still going on. Most of that is voluntary. People are just volunteering their time who care. A little bit infrastructure contracts to Booz Allen Hamilton.

DR. STEINWACHS: Are there any other things that we ought to be thinking about for future agenda items just to put on the slate? We’re really out of time but I just wanted to –- Mark you had mentioned one thing and I thought you and I had to talk some about -– I don’t know if you had a chance to look at the report that this group did before.

DR. HORNBROOK: No, I haven’t had a chance but I saw your response. Thank you. I figured it might be something you already solved.

DR. STEINWACHS: We thoughtfully address it but maybe you and I can talk.

DR. HORNBROOK: In the luxury of a small story here. In Kaiser Permanente we finally after decades have decided that race and color is a relevant variable to put in the data system because the principle that Kaiser was founded on is that Kaiser should be colorblind therefore you shouldn’t collect the data because then you can’t judge somebody by the color because you don’t know it. Of course finally the board of directors said no that’s the wrong way. You’ve got to become much more proficient in collecting race and ethnicity data. Now there’s a whole policy that has been written. There are now procedures across all of Kaiser nationally to improve collection of race and ethnicity data. It allows multiple responses. It allows responses that I never even knew existed before because when my wife went into the hospital I had to fill out the form on her behalf. Of course they gave me this 8.5 by 11 sheet laminated on both sides where I had to pick her race and ethnicity data. It was kind of interesting.

Our level of race and ethnicity data is going up slowly. The tumor registries always had race and ethnicity in it, as it was always required from the very start. When you got cancer we could trust that data. We’ve always trusted it. Birth certificates also pretty trustworthy. This discharge’s abstracts were the next but it would turn out that most discharge abstracts didn’t have the data filled out. People refused to answer the question and they went to the clerk and the admissions office. Now we’re saying in order to get admitted you really need to answer the question. The discharge abstracts are going up. Then you look at the ambulatory care and we’re still trying to fill that in so we know the race of every ambulatory care visit, every prescription, every lab, et cetera.

MS. GREENBERG: You want to get it at every visit.

DR. STEINWACHS: Every person.

DR. HORNBROOK: Every person. Once it’s there you stop asking.

MS. GREENBERG: You have a defined population. You should be able to collect it.

DR. HORNBROOK: We should collect it at enrollment but if it’s not there we remind people.

MS. GREENBERG: But then when you find it once then you have it in your system.

DR. HORNBROOK: Then the question is do you use the census data, which is the national standard, or do you use regional data. In the cancer research network we found out if you try to impose national standards on local regions you’re going to get back pressure and you’re going to get lower response rates. We allowed, the Hawaiian region for example, to have a different set race and ethnicity categories in order to keep the response rate high and Hawaii, make them relevant to the Hawaiian population and not use the same categories you use in Detroit or New York or Boston. We’re finding that then gives the researcher the ability to collapse to whatever level he or she thinks they need but I’m also beginning to think that researchers don’t understand multiethnicity very well. They themselves are still thinking single ethnicity, single color.

MS. GREENBERG: We’ve had a terrible time dealing with, from a statistical point of view, a multiple ethnicity data.

DR. HORNBROOK: You have different analytical framework when you move into ethnicity.

MS. GREENBERG: ARE you using the national standards, the OMB standards?

DR. STEINWACHS: Everything collapses it to the ONB standard.

DR. HORNBROOK: Yes, we collapse it to the OMB standard as best we can.

MS. GREENBERG: There’s also a standard that’s maintained by actually now NCHS. It was CDC Atlanta but now it NCHS. It has the full, everything, but you can pick them. You’re aligned with that.

DR. HORNBROOK: I was hoping that we would see more of that in our country not just Kaiser but also healthcare systems would begin to move in that direction.

MS. GREENBERG: There was some effort around that in the 90s and then I think it kind of fell off. It could be timely. I mean just with the new administration and the whole business.

DR. HORNBROOK: I can’t believe because when I was in Hawaii when he came out to visit several times, each time he came out to visit. Obama is a Hawaiian. They think of him as somebody who is locally born and bred, even though he wasn’t really born there, but he was raised in Honolulu. Was he born there? He is probably born there too. It was obvious to every Hawaiian on the street that he was one of them. There was no sense that he was some strange Arab or some strange sinister communist from somewhere.

DR. STEINWACHS: On that note I want to thank all of the subcommittee for being here and for all the work and I hope everyone can attend the hearing tomorrow afternoon. We will keep the balls going.

(Whereupon the subcommittee adjourned.)