[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Subcommittee on Quality
September 17, 2008
Hubert Humphrey Building
200 Independence Avenue SW, Room 505A
CASET Associates, Ltd.
Fairfax, Virginia 22030
P R O C E E D I N G S
DR. CARR: Let’s begin this is the National Committee on Vital and Health Statistics. Let’s go around the room with introductions. My name is Justine Carr, Caritas Christi Healthcare, Member of the Committee, Co Chair of the Subcommittee, no conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, Member of the Committee, Subcommittee, no conflicts.
DR. W. SCANLON: Bill Scanlon, Health Policy R&D, Member of the Committee, Member of the Subcommittee, no conflicts.
DR. MIDDLETON: Blackford Middleton, Partners Healthcare, Member of the Committee, Member of the Subcommittee, no conflicts.
MS. MCCALL: Carol McCall, Humana, Member of the Committee, Member of the Subcommittee, no conflicts.
MR. GREEN: I am Larry Green, University of Colorado, Member of the Committee, Member of the Subcommittee, no conflicts.
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and Executive Secretary for the Committee. I just wanted to recognize to my left, if you have not already met Mary Beth Farquhar who will introduce herself but if you were not here yesterday I wanted you to know that the committee voted yesterday to send you a letter expressing their thanks for your support of the Committee and the Subcommittee over the past few years.
MS. FARQUHAR: My name is Mary Beth Farquhar. I was formally of AHRQ, transitioning now to NQF.
DR. CARR: Thank you I am trying to get Bob.
So we have just done introductions do want to say who you are?
MR. KAMBIC: I am Bob Kambic, CMS, and I am staff for the Committee.
DR. CARR: Okay great and I would like to second the thank you to Mary Beth for all of the help that you have given us and we are delighted to see you here representing NQF that is wonderful.
So our agenda for today is pretty tight. We have talked about our Charter on our conference calls and we want to finalize that and we want to look at the big picture of work schematic that Harry has asked us to put together. Then turn to the discussion of patient-centered health and we had some of the discussion yesterday at the Populations Subcommittee. And we want to come to closure on that of what our next steps are Paul anything to add?
DR. TANG: No.
MS. GREENBERG: Justine, just at the appropriate moment while I do not know brushing my teeth or in the shower this morning or something, I had an aha experience. I actually mentioned it to Debbie Jackson and she had a similar experience trying to pull together the different threads from the discussion yesterday because all of them were relevant but in some ways they were sort of walking past each other so when it is appropriate I will give you what I came up with and you can take it or throw it out the window.
DR. CARR: Thank you Marjorie. All right let’s turn to the Charter. The NCVHS quality charge it is all here in draft from 09 04 08. I did send it out to everyone and I am going to just hit the main themes which are one well let me turn for a moment and say the Subcommittee on Quality will focus primarily on the first function outlined on the NCVHS Charter. That is monitor the nation’s health data needs and current approaches to meeting those needs, Identify emerging health data issues including methodologies and the technologies of information systems, databases, and networking that could improve the ability to meet those needs.
So we then have identified themes of interest and there are three and I am just going to say those and not too much detail but one is emerging health data needs for delivering, monitoring, and improving care. The second is public reporting, support of quality. The third is data exchange.
I would like to open it up to the group to ask if there are any comments, suggestions, edits, or recommendations on the Charter.
MS. MCCALL: Starting with the third one, data exchange I would like us to do something that avoids people thinking this is HIE. While there are technical considerations to be sure this is and I am going to read what is in the parenthetical, reusability of data for quality purposes. I think it is not that the technical exchange it is broader than that so
DR. TANG: So you agree with the parenthesis?
MS. GREENBERG: I do I absolutely agree with that so
MS. MCCALL: So you could just use that.
DR. CARR: So it is the use of data for purposes so that is number one. I know that quality is in the headline of our Subcommittee and yet it means a specific thing so the meaning assigned to that in a health care perspective tends to be fairly well defined. Yet what we are talking about is also broader than what that typically means today in a clinical setting.
We talked at length yesterday about it being broader than health care, it is health. We have published papers on the fact that there are many determinates of health and they are much broader than the health care system. So if we could find a way to expand that concept I think we would be well served.
DR. TANG: So do you have any recommended language?
MS. CARR: Not off the top of my head
DR. TANG: Well you just said, use of data for
MS. GREENBERG: Yes use of data for use and reuse
DR. TANG: Actually reuse is good because then it is not breaking any data which is our current mode of doing things.
DR. GREENBERG: So the recommendation is instead of calling it data exchange call it reuse of data for quality purposes?
MS. MCCALL: How about use and reuse which offers both.
DR. CARR: Okay and it is not what I want is broader than quality purposes. Okay suggestions?
MS. MCCALL: Basically some of it is already in page one. Basically to understand the health and health care needs of the American population.
MS. GREENBERG: Everybody sort of has that
MS. MCCALL: I remember that but the headline here is not we do not want to redefine what we are using it for either down(?) or scope. The headline here is the use and reuse for those purposes so those purposes need to be as broad as they are in the opening paragraphs of our Charter. That is my point.
DR. TANG: So the heading of these bullets though says, themes of interest so it is emerging data needs that were not covered before, the public reporting of things that were not previously available, and the use and reuse of data. So I mean I think it is exactly right.
DR. CARR: So would you just make it use and reuse of data? This gets into secondary
MS. MCCALL: For health improvement maybe? We can wordsmith it later but what I want to do is pull what is upstairs in our compare it with the Charter.
PARTICIPANT: Okay I think that is a valuable addition.
DR. MIDDLETON: Justine, I think this is excellent and great, my concern is though given the way I think I feel the sands shifting for this Committee a little bit. I am concerned we are losing an opportunity to make a public or the individual’s perspective on data and quality you know paramount on the equal level of the provider’s perspective and an equal level with the public health perspective. I love the three circles that I have seen from this Committee before of provider and personal and public health dimensions of health care. I think that construction works well because it allows us then to promote patient-centeredness through the patient’s eyes and the patients view. This discussion doesn’t do that for me. Right now it looks like hey, we are talking about the health needs of the provider system again, and we will do the public health needs and we will throw in exchange. I would suggest also an exchange of information goes through all three circles and is reflected by that intersection point.
I think we have to say something strong about comparative effectiveness. We have the word value – efficiency and value – a lot of the analyses in CMS and whatnot is about comparative effectiveness, the data needs for that. I do not want to hide that under anything. I think value is a good word too, but the question might be whether or not that is worth promoting even higher.
So in sum my suggestions are that we have three categories of provider, public health, and personal in all of the issues we can borrow some of the issues from patient-center personal.
DR. CARR: Okay so are you referring to under the emerging health data needs provider, patient, and support?
DR. MIDDLETON: The three top level bullets are health system data needs, public health data needs, and individual data needs or personal data needs. That borrows from prior NCVHS construction.
MR. GREEN: Could you say more about how we could capture that central idea of the three circles and the focus on public health? I agree with what you just said, if you look back at it this is very it is as if public health and the measurement of quality for the whole population is almost untouched in this formulation. Isn’t that your point?
DR. MIDDLETON: Yes.
MR. GREEN: So could you just say what it could say?
DR. MIDDLETON: I think there is and this is just a suggestion and an observation but you know I think the three top level bullets have to be I think there is the three intersected circles diagram, which I think is NCVHS core blood if you, that is a provider’s perspective on health care information, provider’s system, et cetera, the public health perspective, and then the individual or patient view.
DR. STEINDEL: It is the population health is where I am having a problem with this discussion. I mean there is a subtle difference between as enumerated in here with public health needs and what is expressed in those three circles as population health needs. I think this Subcommittee needs to focus on what do they mean. Do they mean the narrow concept of the quality needs that are expressed in public health reporting? Or do they mean quality with respect to the broader mean domain of population health?
DR. TANG: So is it possible so the three circles really is part of the vision and it was laid out in that report. That still is the vision under which we operate. The theme of interest is a quality subgroup approach to how to honor those three circles. The approach which may not be stated well here, is we are looking at emerging data needs and in the second discussion we are going to look at it from the perspective of the patient which is new, he person part. That we want to support the other needs of public reporting and I really like the change because it was perfectly stated, it is not HIE. It is about data use and reuse and what that buys us is efficiency and value.
So in a sense these are approaches to filling up the vision which can apply to the entire NCVHS. Is that construct consistent with what you think?
DR. MIDDLETON: It is Paul, and maybe it just means that there is a paragraph missing here before the themes which says, how these relate back to the NCVHS’s broader vision. I would accept that.
DR. CARR: Okay that sounds like
DR. TANG: We have stated it but we did not put it in here.
DR. CARR: Okay, all right so we need to add a paragraph on how it relates back to the vision, to the NCVHS vision. All right with regard to these areas of focus within this are there any additional suggestions, recommendations?
MS. GREENBERG: That second dot point as it were, is that supposed to be public reporting in support of quality?
DR. CARR: Yes.
MS. GREENBERG: I just did not know exactly what you meant.
MS. MCCALL: Does the same comment apply here about broadening beyond the use of quality?
DR. TANG: So partly quality reports are now supposed to be consumed by a different party. We have always had this provider focus so it is all about the
MS. MCCALL: Understood.
DR. TANG: So everything we are slanting to this new way which is again what we are hoping to describe in the second half of this meeting.
DR. MIDDLETON: The only other focus I would love to throw out is the bullet about measuring outcomes of envisioned care using clinical data from AHR adhering to data stewardship principals has kind of a lot of things related one to another. I think there needs to be prominence of the bullet about measurement and how this Committee is going to support development of measurement standards that in fact allow us to measure quality. There is a need in that space and there is a growing interest to attach a measurement with a CDSRT and clinical practice guidelines.
DR. TANG: So that is actually sub bullet two, the quality of data?
MS. MCCALL: No it is the second page, top of the page
DR. TANG: No, what I am saying is responding to Blackford so the way to the measurable without the extra burden of and useable is to have data that is captured one and the same it is the use, reuse and if you captured in an executable form that is what sub bullet two is supposed to be?
MS. MCCALL: Well I heard something will else and
DR. MIDDLETON: Here is where I am missing Paul and thank you for bringing this up. This is on the right track. I just wonder if we want to go the next step. The quality of the numerator is X and the quality of the denominator is Y or whatever but do we actually ever want to consider how X and Y are put together in this Committee as a measure?
MS. MCCALL: Yes, we have actually talked at length about that and I think I find it gets lost not only in our own conversations and worthy of bringing up but in my day job it gets lost. So people tend to think that data is sufficient. It is necessary but not sufficient by a long stretch and it matters. You can get wildly and widely different conclusions based on the method and measurement that you use.
DR. STEINDEL: Yes, I think when we start walking into this area we have to be careful in terms of scope because NCVHS has never been a body that actually develops standards. They are a body that develops principles, guidelines, they review other people’s principles and guidelines, they review other people’s standards but NCVHS just does not have the bandwidth actually develop standards. This is kind of what we want to do is clearly enunciate that middle layer which is where NCVHS will fit in. That may not specifically help Carol with her day job because she is actually sitting there looking at the nitty gritty standards but it may help her because she has some principles to evaluate what she is using in her day job.
DR. MIDDLETON: I agree with you just on the point that this Committee does not actually make the standards, make the measures, whatever but what NCVHS does do powerfully is to say guide the industry. Sort of how do these puzzle parts fit together?
DR. STEINDEL: Because you actually used the I think you used the word make standards or do standards.
DR. CARR: Okay, so we agree then Marjorie and then Paul
MS. GREENBERG: For the record, I mean I absolutely agree that certainly now the Committee does not have that “bandwidth.” For the record the Committee really has put forward standards in all of its work on uniform data sets or minimum data sets, so the Committee has a lot of experience with that but I do not think that it is really in a position to do it now. I think a lot of what the Committee has put out on privacy are types of standards but I do not really disagree as to what we should do in the future. As for whether it is within the scope it actually is I think, but what Carol was saying in particular is the Committee does not develop measures and that is for sure. I do not think we have ever really done that but guide measure development, support measure development, and all of that.
DR. CARR: I think Paul was next and then we will get to Carol.
DR. TANG: The Committee and NQF, which also doesn’t do either standards or measures, are very powerful influencers. One of the things that NQF is doing is setting the new bar for criteria for endorsing standards which directs it towards a certain direction that helps Carol in her day job.
The other thing that we can do and part of this as well is feedback on something that NQF is doing. They are setting national priorities. The national priorities are a different set of data. One, it is not the mission(?). Two it deals with care, meaning episodes of care, coordination. Those are the things that have been hard to measure. They do not have measures and they do not have data. How we can interrelate is leveraging off of their work and then bringing the person, the consumer back into it. Then I think combined we have really without developing standards or developing measures actually influence which come through and I think that is useful.
MS. FARQUHAR: Carol to help you with your day job, when I left AHRQ part of the discussion was about whether AHRQ) should be in measured development or not measured development. What they had decided and what was recommended by the MACP?) was that they should do the methodology of how to develop a good measure and have it put together in a particular way that people will understand it and probably give guidance to future developers.
MS. MCCALL: I want to build on this scaffolding. Some of you may remember some testimony that we actually took in November I think. November or February there was a gentleman that came, bioinformatics specialist, and he talked about some work going on in some open source way. He had this phrase he used he said that crossing the chasm of semantic despair.
DR. MIDDLETON: It must be Chris Shute.
MS. MCCALL: It was and yet what they are talking about is building that kind of capability where what you had talked about and it was delightful
DR. CARR: We want to keep an eye on the time. We want to hear what you have to say and then bring it back to how we are going to change this so we can move on to some of the other things.
MS. MCCALL: So part of what he talked about was creating was not always on mechanism where that type of thing can be done in a wisdom of crowds type of approach by experts who know how to create measures, put in common terminologies, et cetera. So it sounds like a kind of place that building on what you had talked about setting guidelines for that. It becomes the place to go to know what to use and how to use it. So those become some of the “new methodologies and technologies” and we can actually develop an opinion about those that work but also things like it. It can greatly accelerate success in this area, I think.
DR. CARR: I want to recap. What we want to do is make sure that our charge it helps us directionally going forward and so I am open to any recommendation or language either now or a placeholder for some language changes later. Do we have a specific language recommendation in the charge right now or a suggestion? Carol, you had said, we have the data but is it the data aggregation or what was the concept you felt was missing from what we had under Public Reporting?
MS. MCCALL: It was under Measures so it was playing off what Blackford said around the measurement, so it is how you actually create metrics. What is an appropriate way to create a metric? I think we captured it there is data, there is taxonomies in semantics. Then there are methods for creating particular measures.
DR. CARR: Okay, so to begin this is a Charter it is just directional is there any other major change? If not and hearing none I would like to move on to let’s see we have probably the next thing I think we would like to do is move on to this structure and again this is sort of an overview. It helps us and reminds us of what we are doing. I do not want to get into detail on this I would rather kind of make sure that everything that needs to be on this piece of paper is there and then move into the more substantive discussion of patients and their health coming out of our discussion of patient’s centered medical home. Also review the national priority partnership so that we have alignment of what we set out to do with what NQF is doing.
If you look at this overview that Harry has asked us to put together I want to really this piece of paper with the circle. Steve.
DR. STEINDEL: Just a couple of quick comments this was from yesterday’s Standards Subcommittee meeting. First of all we dropped regular updates totally. I thought that would be a big plus. Under Audiences and Agency Contributors we actually dropped that to a very concise list. I suggest that you do the same.
DR. CARR: Right so we talked about HHS, Congress, and industry. I think we should do the same.
DR. STEINDEL: And agency contributors we talked about instead of listing the agencies in HHS we just said HHS. I think the final language was OPDIVS and STAFFDIVS.
DR. CARR: Then we added other federal health care agencies and industry.
DR. TANG: I wonder if we could co conspire with Standards to say that this format does not necessarily bring a whole lot of value and that although it was a good idea to organize it, it was not really I mean we are of force fitting this and we do not really it does not provide any value back to us. I do not know that if we cannot provide value Standards then it is not providing
DR. STEINDEL: I think the comment that Harry made at the Standards meeting yesterday, when he created this he actually created it for himself as a cheat sheet and you know it is very useful as a personal device.
MS. GREENBERG: I never saw it before.
DR. STEINWACHS: Standards has been using this form a long time and you know I think when you look at it from that genesis you realize, yes, a lot of what is on here does not make sense.
MS. MCCALL: Well not only that I think as a personal device around something that is more specific it can be incredibly valuable. Once you get into a topic you can start singling out which industries, you know which particular agencies and it can be a cheat sheet as you begin to work a plan.
DR. CARR: I think that is right so again I do not want to belabor it but the two things we want to talk about are the current hot issues and subjects to develop. Those, also, I am also not so clear on, which is which, but I took the two hot issues meaning the things that we are working on actively are emerging health data needs for delivering, monitoring, and improving care from inside and outside a care delivery model across the continuum of care.
Then I just have patient-centered health so we are going to talk about that. You know what we exactly mean by that but I did it as a placeholder and also NQF partnership, national priority partners, and hightech(?) to help focus on data issues.
Then over on subjects to develop decision support as an effective arm of quality we want to think about that. Public reporting in support of quality and these I just took from and data exchange which we have now changed to use and reuse. I just sort of cut and paste from our charter on this.
The other thing I was not quite sure where we want to put it or even how we want to handle it is data stewardship. So Paul, do you want to make a suggestion here?
DR. TANG: I think it can be used to show how our work relates to NCVHS’s goal of dealing with data but I do not want to force feed I thought our discussion in the first half was very productive and I think we have a sense of where we are headed and to try to force feed it into other models does not necessarily contribute.
DR. CARR: Marjorie
MS. GREENBERG: This might be the point where I can share my aha experience but it is triggered by this term patient-centered health which I really think what we want to talk about is person-centered health. As I said I was trying to think of the different streams and the different views that people were advancing yesterday and Larry obviously cares deeply about this patient-centered medical home development which really does have legs. When you first said it did I was not so sure that it did but it is the whole issue of health affairs and everything has come out and the National Health Policy Forum so it totally does have legs. Then we have got Don and I just sort of itching and I think Carol too to revisit some aspect of that 21st century visit our vision for health statistics.
Then we have got what Paul was saying yesterday about putting the person in the middle and it all sort of came together in my head with this kind of person-centered health. I was thinking that my problem with data stewardship which is critical is that it is a yawner. You hear data stewardship and it is a yawner, whereas I tried again not because it really matters so much the how we observe the 60th anniversary but because I see it as this opportunity to kind of you know make a splash like we did years back with those concentric circles and the 21st century vision report.
I think that this idea and it turned out that Debbie was having the same thought you know it is sort of like it is about the person stupid or it is about the data stupid as opposed to you know it is the content which has been so lost in a way in this whole it is what we really want to know. It goes back to Lisa Isonian(?) and Kathy Colton’s diagram and it is sort of what do we really want to know? What are the questions? What do we want to know about the population? This idea of this sort of person-centered health and it can pick up several things you mention — if you really have person-centered health you have got to know what the person thinks when they enter first of all what is important to the person just from their health point of view which you collect maybe in interview surveys or you know a health interview survey.
Then you want to know why did the person seek care? They are not ever going to get care unless they you know an emergency if they did not seek it in the first place so why did they seek it? Then the thing about their goals their treatment goals, that is so critical and right now I mean ICD certainly does not pick up treatment goals. ICF really can. I have never really heard it discussed that way necessarily as a way to code the person’s treatment goals but I mean when I think of the kid who injures their knee, their goal is to play soccer again. I mean it may require getting a ligament fixed or something but their goal is to play soccer. The mother’s goal is to take care of her children or the employee’s goal is to work. All of that is captured in ICF.
Now this brings us to the influences on health and which we agreed are only partly health care. So let’s not worry about updating the recommendations that have to do with the enterprise and all of that — they were dead on arrival. I mean they are true. Frankly we have a very decentralized system and we do not coordinate and certainly NCVHS does not have the resources to do what it should do which is bring together population health data. There is more money in one study at NIH than there is in all of NCVHS but be that as it may what really grabs people is that influences on health. That is what is important to people.
So all of that I think could and then of course the Privacy Subcommittee, that is what they are concerned about the person. You know what information how the person feels about what information should be available, should not be available, how it should be available, who should have access to it, whether you should have to have consent all of that relates to the person. Anyway that is my little aha.
DR. CARR: Thank you, Marjorie. I think that is extremely helpful. I think it was Paul and then Steve
DR. TANG: So looking at the first theme not to readdress it but with Carol’s visors on and if you read it again it looks like it is talking to the old health care system. Let me try to rephrase it with what Marjorie just said.
We are looking at emerging data needs for a health system, not a health care system, where the person comes first as a fully engaged member of his or her health team. So it is talking about emerging means there is new things that we have never measured before, never taken into account in our public reports.
It is about the health system, trying to create a health system and we are newly announcing that the patient’s on the team
MS. GREENBERG: Well, your health care when we are talking team and patient.
DR. TANG: No, you have a coach there are teams, your caregiver, your spouse there is lots of group effort the village thing, to promote health. We all have to all eat healthy at your family’s you know you do not have separate — you get to eat red meat. So all of it, it is a village effort and it has to focus on an individual or a person and these data are not captured. We are going to go out and find those gaps and bring them into everything the measurement system, the so that plays off of it.
DR. CARR: Okay so I am going to read it again. Emerging data needs for a health system where the person comes first
DR. TANG: as a fully engaged member of her or her health village or a team.
MS. MCCALL: I put it down. I want to continue to work on it. I understand what you are saying and yet I also think that team, the word team it holds with it fully engaged participant
DR. CARR: Next we have Steve and then we have Bill
DR. STEINDEL: Paul, I think you put it very, very well. I like that phraseology and I almost backed off from saying anything. I think one of the big problems that I have heard in this discussion is we have a subject and then centered health. We are arguing is it patient-centered health, is it person-centered health and there is differences. I think those nuances have been discussed, they have become clear, and I think it is an emerging issue what we really want to talk about is centered health. We do not know what the subject is yet and that is one of the things that we want to identify.
You did a good job of stating it in that summary statement that the person engages as a full participant in health care delivery. That is what we really want to discuss and discuss the aspects of it. Whether we are talking about that as a person and we are looking at it as a whole picture of their whole life, when they are looking at it as when they are engaged as a patient and getting medical care from the actual health care system. Those are different roles that have different aspects and I think the important thing that we can contribute is what are those differences, when they are engaged, how we can talk about it, when role is important or not. Drop the idea of the subject.
DR. CARR: Okay, I am going to just look to Bill for his input.
DR. W. SCANLON: I guess this comes from part of my other life which is the economist and the issue for economists in terms of health care is the real information and balance that exists. That I do not like anything or most of everything else that we can consume the consumer does not really have a sense of what the value is and so therefore is not able to make a good decision from their perspective. In the past the whole issue was well the physician is going to be their trusted agent but then we began to realize, gee, there is a conflict of interest there and we need to sort of worry about that.
There is a question the idea of a team when everybody on the team does not have the same goals. Again, sort of stepping back if the economist would say, we really need to address this information in balance. That is kind of in some respects what the aspiration is for data and information is how do we change the information that an individual has at the point of decision and ideally it is very specific. It is not this thing where we go and we sort of look at the hospital compare or plan compare or anything like that and we see that over two years ago this is how this organization behaved. No, it is I have got these symptoms, this is sort of the existing knowledge in terms of science, and this is the best thing that I could do at this point in time.
So it is this issue of how do we get there in terms of improving information flows. It is very possible that we are not going to get there completely in terms of the individual or the patient being able to say, I can make this decision on my own just on the basis of information. They may need help but the question is where is that agent that is going to help them that does not have the conflict of interest going to come from. Because the payers of a conflict of interest here, too, which is that if they say, do not use it guess what they get a bigger share of the premium dollars. So I am worried about where we are going.
DR. CARR: Paul did you want to comment?
DR. TANG: I have two comments. One is I think your absolutely right and the new world that got created even since the three whatever we call that report with the three circles is that we have PHRs. What happens is that you can provide them with data, knowledge, and tools for the in this case patient to make decisions at the point of opportunity. Let’s say a diabetic — they obviously providing them back the information let’s say in graphical form where they can correlate the I do this whether it is exercise or and this happens we have just seen this tremendous transformation and all of the sudden at the point of behavior the patients are now in control we have taken off the blinders to information
DR. W. SCANLON: Well, we have taken you have brought up an example of behavior but I think that let’s say somebody has cardiovascular disease and they end up in the hands of a cardiologist versus a surgeon. What is going to be the recommended treatment which is going to be their course? We have historically had that and if not I mean it is partly conflict of interest it is partly a question of, gee, I do this and I think it works. So it has been a genuine belief and this is one of the problems we have is that there are things were we actually are talking about services matter in this. The recommendations there are all not science based.
MS. MCCALL: So take that point and if I were to say, okay, I grant you your point how does that affect what you want to see changed or added to what we are talking about here?
DR. W. SCANLON: I do not know. My problem is we are at such a high level that I do not know how we bring it down to both this level of are we going to be able to do something that is going to be able to have an impact? I guess I am partly though I am objecting to the idea of painting things too rosy and the word team triggered my comment I am thinking that I do not necessarily want to get a team when somebody is pulling in the other direction.
DR. CARR: Now I think that is an excellent point let me just recap. We are not worrying too much more about this. We basically deleted a number of things.
Where we are is talking about we have got a restatement of our focus — emerging data needs for a health system where a person comes first as a fully engaged participant. And now Bill has just raised a point that initially we said team but we have this assumption that a person trying to make a medical decision is seeking help from unbiased participants. So the point is if you have a heart problem you go to a heart surgeon you might very well end up with heart surgery. So Bill’s applying economic theory you could say that do we have a balance of information.
Having recapped in that way I would like to
DR. MIDDLETON: I am sorry Justine can you read it just one more time?
DR. CARR: This was the first statement in our Charter that said emerging health data needs and delivering and monitoring and improving care. As we move away from the medical model we wanted to have it more person-centric and health-centric. So emerging data needs for a health system where the person comes first as a fully engaged participant.
DR. MIDDLETON: So my gut reaction is in a way I do not think we need to go from kind of a medical centered orientation to fully patient-centered in one fell swoop. I think we should go to patient-centered but putting the patient first is that going to rub some clinicians and some stakeholders the wrong way or should we just say patient-centered?
DR. TANG: Well, there are two pieces. We are addressing a gap. One we are going back to the vision which is the three circles. The person was on there because you know they needed a third P but now we are really putting person at the front of that which broadens it from health care to health.
The other piece is actually addressing values. I said this in the Population so the booster seat problem is it does not matter how many people you want to visit primary care if there are not any around. So the value thing is to bring the folks who are the volunteer army — I am going to get away from the team is the individual and their surrounding character. So that is the untapped, unpaid for, but also we have not offered them the knowledge how to be a caregiver for your loved one.
So in a sense we are doing a lot of things by that and it may or may not be right.
DR. MIDDLETON: My only reaction, Paul, would still be we are not making a value assessment. We are trying to enhance the system of care including the patient and patient-centeredness. So in a way I do not want to bypass shared decision making or collaborative models and say the patient is never going to be isolated alone.
DR. CARR: I want to ask if we think that we are going to get it to any actionable steps in the next fifteen minutes. Because I think that we have had a lot of calls and we can continue to have calls but we are talking a lot about the big picture and sometimes taking it to an action step helps clarify it. Larry has not had a chance to speak yet so I am going to ask Larry for input.
DR. GREEN: I just wanted to answer your question. I think we should try to get to an action statement in the next fifteen minutes. We are mostly repeating ourselves and going through the same conversation again. So in the spirit of trying to move toward an actionable step this current issue, the way it is restated could be our target. Let me ask the question of what would we like to do next?
DR. CARR: Yes, I was thinking are we going to have a hearing. If we are going to have a hearing what is the focus?
DR. GREEN: I have a suggestion — an intersection between quality and populations that strikes me as very inviting is if we could identify a conceptualization of how this fully activated patient is going to actually behave and move around living their lives, living in the information age, sometimes getting a little health care, sometimes getting a little medical care. If we could articulate some conceptualization that is a vision of where we think this redesign is headed, to abandon the old medical model and replace it with a 21st century high performance health care system that has these dimensions that we keep talking about — what would be actable is what would be the points of data extraction, what will the data look like, how will they be organized and turned into what Bill Scanlon stated so succinctly yesterday, absent a health information infrastructure, and begin to articulate what that health information infrastructure could look like and should contain and then parse it. Start going down to when this happens, when they have to be in the hospital and they are going to become a horizontal person and get labeled being a patient what are the crucial data needs for that whole process to begin to operate and to be measured and assessed.
I have passion for this because of what we learned over the last six years, 27 comparative case studies where primary care practices worked the territory at the interface between people living out their lives at their work, their school, and in their communities with trying to deal with these health behaviors that account for 40 percent of premature mortality.
This is a total morass. It has not worked out. The answer — when do you know that you have done it? When do you know that you have got an activated patient? What is it that it takes to move this – all of that — interactive voice recognition software that can virtually replicate health behavior counseling. The activated patients will not go there. You have to hold their hand in this project, walk them there, make the enrollment, get them to the first web page, and then after you have arranged how to do that and you have got the documented data that have done that step – one patient used it 64 times in 5 weeks. Something that is totally unaffordable in a provider-oriented health care system but with appropriate IT support.
That is just one little bit. There are hundreds of these things going on but they are not organized around a data flow that lets us know where we are in time and space of whether we are moving forward or backward on this. That is what I think we should be doing.
DR. CARR: Excellent – Carol?
MS. MCCALL: I would like to see two things. One of the things goes with what Larry is talking about is to take testimony. I think because there are so many things that are out there and so many busses that have left the station, that it is going to be more like one of those big sampler plates that you get at the restaurant. I think that is important for us to be intentionally provocative and diverse to understand what is emerging. And recognizing it is only going to be a sampler plate.
Then come back and ask the questions. What are the implications for data? What are the implications for measurement? What are the implications for bottoming up that? Recognizing that is not by any stretch going to be universal. And keep an eye on that theme. This is going to be very patchwork quilt. The feature is here it is just not evenly distributed. That statement is going to become huge, so how do we deal with that though? We must address.
Number two, I still want to go back to this picture that says we had a point of view eight years ago that said around not disease but functional status, well being and also community attributes. I do not know if I would go out to the third which is political, cultural but these are things that we have said that are important and yet we do not know where the gaps are and can we capture the texture of this landscape today in data. And marry that up, synch it up at the right level, et cetera to this other information that is either here or coming. And so we can go and say because we are going to want that too. We can call that an existing but it could be a gap. Then the other testimony is emerging.
MS. GREENBERG: Well, it is a link between the population and the
MS. MCCALL: So those are the two types of things, two types of testimony that ultimately become actionable because we are going to see stuff(?).
DR. CARR: I am going to turn it to Blackford, but I am hearing that we plan to take testimony that represents a sample place. We will come and understand the implications for data and measurement, but that we work from the picture, the point of view that we have in the 21st century vision. Okay, Blackford.
DR. MIDDLETON: So my simple question and brief will be five things.
It is a small number, seriously. I think we are all on the same page about kind of this visioning exercise. What are the post-chronic care models of care that are really going to account for lifestyle, clinical and social issues from a patient-centered point of view to manage health and wellness as opposed to a disease system? So that is a visioning exercise. What is that? And let’s mark it at five years out, ten years out, fifteen years out, and twenty years out.
With that then in hand, go into the details a little bit around four areas. What are the data requirements from a social, clinical, and business perspective that must be integrated to manage this ongoing vision? What are the quality issues that pertain to those data? How do we assess quality in the ways that we have already talked about assigning measures and giving guidelines for measure development what have you. Then what are the undergirding principals of decision support and knowledge management that are going to be used across lifestyle, social, and clinical spheres, if you will, to allow a patient to have a roadmap for his or her care?
DR. TANG: So can you distill that? So if that was simple can we put one more modifier how to make it tractable?
DR. MIDDLETON: The request is a visioning exercise and four related testimony episodes.
DR. TANG: But they seem enormous. That is what I mean by tractable.
DR. MIDDLETON: Well, Bob are we supposed to start at the top and
MS. GREENBERG: We did not hire you guys to do something simple.
I think a hearing is indicated and the problem that I have with this post-chronic model of care is we are still talking about care, we are talking about disease. I think it would be very interesting to gather information on I do not think anybody else is doing that — is what does a patient or person centric view really mean? Several people have commented that if you are not collecting anything from the patient other than their health care symptoms, if you are not collecting anything about what their needs are, what their treatment goals are, what their all of these things then how in the world can it be patient-centered?
I think that would be a really interesting thing to engage the community on and other things that you could add in that hearing, too. As for the big model with the influences, I think we could start with the type of contractual effort that Don and I have been exploring and again I have talked in the past with Dan Friedman about this who was very influential with Barbara Starfield in developing that schema — to actually have them gather information about, okay, in this whole thing outside of the health care system that clearly influences health, where are we with this? What do we currently get on this, that, and the other thing? We do not have to do a hearing for that. Get that report out and then you could get reaction to it.
I am being a little more mechanistic here but I think you could think about what you would want to gather in a hearing and what type of people you would have to hear from and a lot of the things Blackford mentioned and Larry has mentioned, et cetera. Then I think on this influences on health thing that we could start with going back to Dan or to somebody else to sort of say, okay, eight years ago, as you said, we laid out this vision are we collecting where are the gaps? Are we now collecting more data in these areas, less?
DR. CARR: Thank you, Marjorie, because our time is short I am going to let Larry say one thing and then we are going to have to go to the next item.
DR. GREEN: With Mary Beth here I particularly want to put forward another actionable item that I am enthusiastic about. When I review this handout here about that National Quality Forum’s priorities and their goals, it comports to what we are talking about beautifully. I believe one of the first things that we should do is to have a further conversation with the leadership of NQF about our thinking about what we would like to do and consider partnering with them in some manner. If this type of hearing we are talking about that might be in some manner considered within NQF but it seems to me that would be a very sensible strategy.
DR. CARR: Thank you, Larry, I think that bring it home.
MS. GREENBERG: Speaking of Mary Beth, can you think of any one at AHRQ who could help staff this effort since you are leaving or since you have left?
MS. FARQUHAR: I asked him to do that and Bob is not here but
DR. CARR: Okay, so I am going to outline some next steps. I realize we are just getting this NPP thing this morning, but I asked everybody to take a look at it because it does align very nicely. I think that the image that I have in my head there was this book and there are often iterations of it where it has like an urban yuppie and they have a Blackberry and they wear these kinds of shoes and this kind of hat but I mean that is kind of what we are trying to do. What is a person you know in a health environment? What are all of the things? The inputs, the outputs, what they wear, what they need, what they use, what they don’t use. I think that is really where we are coming up and maybe that could be our figure for the 60th anniversary — a person with their Blackberry.
DR. STEINDEL: In reaction to that we have actually heard very good testimony here at NCVHS about migrant farm workers being just as engaged electronically as health care as people with their Blackberries.
DR. CARR: So we want to have a hearing. The next step would be to align with NQF to get some direction with this of the types of things that would be a win-win. So Mary Beth, maybe you and I can talk about that afterwards and we ought to think in terms of a hearing where we would have an array, a party platter, whatever you called it, a sampler of folks coming in. So do we have a November meeting? We would want to do it around the November meeting.
DR. MIDDLETON: Are we defining one year agenda or a trajectory? Are we defining the next meeting?
DR. TANG: I think both. We want a hearing which is the immediate thing, but the trajectory is it’s the patient stupid.
DR. CARR: And I think the partnership also with NQF and NPP because you know, as we see, the tempo that we can work with is not as vigorous as some other agencies under constraints so I would say what are their needs? How do we help them meet that, so that is sort of part of the trajectory and it is be iterative. I think as we have seen here each of our discussions builds on the other so we get a sharper focus.
My recommendation is that next we set up a call with the appropriate folks from NQF and that we find a time and reserve it for a one-day hearing on this sampler of array of technologies, whether input or coming in or going out from the person in regard to their health.
DR. TANG: So I do not know if we can do November because I think we want say sample but, as a lumper, I think for us to digest it has to be clustered in a way that we can draw meaningful conclusions from each panel around a clustered idea. Otherwise it truly is a poo poo platter.
MS. MCCALL: Well, and then the other thing we actually need to set out and frame out what we want and design it well.
DR. CARR: But we can also bring this up this afternoon with Harry because just as we heard some interesting things yesterday about the PHR technologies and we had a very good, great discussion really about the promise and what the deliverable might be — perhaps some of this might occur within that frame.
MS. MCCALL: So there could be some synergies with those is that what you are saying with other committees wanting to be part of the testimony influence design?
The other thing is what sort of assignments and homework do we need to do ourselves to prepare to design it well?
DR. TANG: I almost think that there should be a review, a contracted work to flesh it out — so other folks what I did not necessarily resonate with having one vendor present for one hour. I actually do not like that. Our sampler has to be a sampler not just a monopoly. That was, to me, inappropriate.
MS. MCCALL: Understood I appreciated the intention but it ended up being fairly limiting.
DR. MIDDLETON: It seems to me that we are still talking about the next meeting or maybe the next few months. Are we commenting on, Justine and Paul, at this juncture, you know to really define a roadmap for this Committee over the next 12, 24, 36 months — I am just confused about what the exercise is because if it is a myopic exercise then sure we will figure out what to do in November, but I do not think that is adequate actually. I think we need to have a roadmap for what are we trying to do? What is our intermediate and near term targets and what are some of the long range targets for this Committee for the next three years? It has been seven years since that visioning document. It is high time for kind of a restatement given all that has happened in that period.
MS. GREENBERG: At a minimum I would think between now and June 2010 for sure, but beyond is certainly reasonable. But I think you know I would at least go that far.
DR. TANG: So to make it a sampler, not a smattering, I would use your we should have a framework in mind for the next 18 to 24 months and that is how we build a hearing. So the sampler fits in a context in that framework. Then we can absorb and assimilate and direct. So I think that is fair.
DR. CARR: We had also promised that we would set up a monthly conference call and I think we hit a couple of roadblocks there but we will get that back on the books.
Okay, thank you.
(Whereupon, at 10:00 a.m., the meeting adjourned.)