[This Transcript is Unedited]




May 22, 2008

Renaissance Washington Hotel
999 9th Street
Washington, D.C.

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030

P R O C E E D I N G S (8:30 a.m.)

DR. CARR: I’d like to welcome everybody to the Subcommittee on Data and Quality. Our status has been changed from a work group to a subcommittee. There were a couple of questions raised about what our title should actually be, so for the moment we’ll call ourselves Quality and Data.

And, what I would like to do is first go around the room. So, I’m Justine Carr from Beth Israel Deaconess Medical Center, co-Chair of the Quality Committee.

DR. MCCALL: Carol McCall with Humana, member of the Quality and Data Subcommittee:

DR. LAND: I’m Garland Land, National Association for Public Health Statistics and Information Systems.

MS. KANAAN: Susan Kanaan, writer for the committee.

DR. MIDDLETON: Blackford Middleton, interloper, not yet member.

DR. CARR: Oh, but wait.

DR. MIDDLETON: But shopping. Partners Healthcare at Brigham and Women’s Hospital.

MS. JAMISON: Missy Jamison, recently NCHS, previously with the National Program for Cancer Registries. Interloper, too.

MS. JACKSON: Debbie Jackson, with the National Vital and Health Statistics, Committee staff.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and Quality, liaison to the full committee, member of the – was it Workgroup on Information and Quality, WIQ?

DR. CARR: No, because we’re a subcommittee. SIQ. But, we may work on that today.

DR. GREEN: Larry Green from University of Colorado, member of the committee.

MS. WILLIAMSON: Michelle Williamson, CDC to National Center for Health Statistics.

DR. CARR: Welcome. Alright, my thoughts are that we will finish right on time at quarter of ten, so that we have time. So, I’m going to be pretty attentive to our time. I think there are a couple of things that we want to accomplish this morning, some of which are on the agenda, some not. I think that one request that was made by Harry was for us to begin to sketch out how this overview helps us to articulate what is the focus of the group, who’s the audience, who gives input, and what are the areas that we believe we should be working on either long-term or hot topics, as Harry has them.

So, I’d like to use this as an organizing document and then within that discussion talk about, well, let me just say we have on here the 23 building blocks for quality review from 2008. And, since we haven’t spoken about that yet I’m going to leave that for the discussion at the full committee, unless we have some time at the end here and I want to focus on the things going forward.

I have provided you also, or I should say Cynthia has provided you also with some excerpts from the report on–the NHII report Information for Health: The Strategy for Building National Health Information Infrastructure. Paul wanted to be sure that we take a look at this and use this as part of our focus going forward.

So, let’s see who just joined us? Don? Well, we’ve done introductions so, Don would you like to introduce yourself?

DR. STEINWACHS: Don Steinwachs, John’s Hopkins University.

DR. CARR: Alright, so, the first thing I’d like to put out there is the focus of this subcommittee. And, the title that was suggested at the Executive Subcommittee was Quality and Data and the idea of data was a number of topics came out of the uses of health data topic. One was the use of de-identified data. That was a very emotionally-laden topic in our discussions and we found that it went deeper than we were able to understand within the context of our hearings. So, that was a topic that was held out as something we would follow up on.

Another data topic was data stewardship. All of the data that we are relying upon to assess the quality of our healthcare is only as good as the quality of the data. And, so, data stewardship was another topic that was held over.

I think those were the two major areas. So, when the suggestion is made that this committee have those two titles, quality and data, that’s what is referred to. So, let me just welcome Marybeth Farquhar. Do you want to introduce yourself?

MS. FARQUHAR: I am Marybeth Farquhar. I am the lead for the quality work group. I work for the Agency for Healthcare Research and Quality.

DR. CARR: So, I’d like to open up for discussion this topic of the focus, what we might see as the focus of this committee, building upon those comments.

DR. FITZMAURICE: May I just offer an idea. I think quality is really important and quality gets into guidelines, quality measures often come from guidelines. So, you could say Workgroup on Quality and Data and Guidelines and then you start adding things on. I think there’s probably nothing more than just quality and I would just favor Workgroup on Quality or Subcommittee on Quality and let everything else be supporting that main focus.

DR. CARR: And the idea of looking at data, de-identified data, data stewardship, that falls under it?

DR. FITZMAURICE: Sure and a lot of other things that come along, yes.

DR. CARR: Other thoughts? I mean I kind of felt the same way that, I think, if we know what it is that we are doing, these areas of focus would come out. And, I look to Steve to speak to the inclusion of the term data.

So, within quality, understanding the role of NCVHS, because, you know, there is a lot of work obviously going on in quality in many sectors and I think that it’s important for us to be focused on what it is that NCVHS is asked to do. So, just read from what Harry had on page one. The NCVHS mission is to advise on shaping a national information strategy for improving the population’s health. Second, charged by Congress with advising the federal government with Nation needs underlying health policy. And, three, provide a bridge between government and health industry and research in public health communities as well as connection to those working on health information policy in other countries.

Then, I guess, you have additional parts. We had talked about just that data is very much what grounds this committee. So, I have found in my first four years that there is a balance that one needs to strike between getting too granular or too macro. I think some of us helped with the development of the composite quality measures and safety measures, the patient safety indicators based on administrative data. That’s a tremendous asset, but it was very granular and I might have been the only one who understood it on the committee because it’s what I do.

So, it doesn’t engage the whole committee, so I think that kind of activity while important to keep a part of, is not the right level for the committee. I know in other times we’ve had sort of sweeping visions of redesign of healthcare and healthcare delivery and we have, actually, some wonderful documents on that, but again that’s sort of visionary. And, I think we need to have a bit of middle ground where we can identify the work of other and raise it up, shine a light on it, amplify it, or elaborate on it.

Paul we started at 8:30, so would you like to introduce yourself?

DR. TANG: Paul Tang –


DR. CARR: Yes, Paul and I are the co-Chairs.

DR. TANG: I’ll eventually get it.

DR. FITZMAURICE: You’re in training.

DR. CARR: So, where we are is, just, talking about the focus of this group and, you know, kind of striking the right level, not to granular, not to grandiose, just somewhere in between. I think perhaps, understanding that focus would best come from talking about the topics that are in front of us, following up on the medical home and some of the carryovers form the uses of health data. So, Larry, you put together a nice summary yesterday in Populations Group. Could you say a bit about medical home and what we learned that might then fall to this subcommittee as appropriate follow up?

DR. GREEN: Well, one summary of what we learned was just that medical home is a medical, or a system of care that is trying to emerge. People don’t exactly agree on what it is, but there sure is a heck of a lot of interest in it. It’s quite clear that the redesign of what we could call frontline clinical practice is joined and the human systems and the reengineering of those systems is underway.

We learned that it is–Blackford and I were talking about this in the cab last night, we learned that it is mostly floating on an evidentiary basis, supports primary care and chronic disease management. And, it’s sort of a guilt by association. We think it’s likely to be helpful because of that sort of data. Whatever you think about the data supporting it or not supporting it or whatever it means to folks, it seems to be happening and it is presenting itself as a promising location of integration for all the–bringing to an individual an integrated viewpoint of their health and healthcare and their diseases and illnesses and problems, goals, and aspiration that the healthcare system can service.

So, that makes it a very interesting platform and a very interesting target and, if you will, a potentially key infrastructure for doing things like monitoring and improving quality. So, as I’ve said in the main meeting and in the meeting of the committee, and also at the Populations Subcommittee, I think that we in the NCVHS got more than we deserved out of that set of hearings. It was very interesting stuff and I don’t think that’s just because of my craziness and my own interest in it. There was a lot of stuff going on in that hearing. So, I really would like to see it stay on the agenda.

This morning, the way I’m sort of thinking about our charge from Harry goes to these handouts and this three-part figure that’s from prior work, you know, about the healthcare provider dimension, the personal health dimension, the population health dimension.

DR. CARR: That’s on the last page of the NHII.

DR. GREEN: I really like this organizing framework and to that extent the healthcare provider dimension would be sort of where I would plop the medical home work. I didn’t mean that to sound like a pun, but I suddenly heard–but, just for a moment if you could use that framework, the medical home could be a guiding polestar for the Quality and Data Committee or Quality Committee.

And, then, I’m very interested in the personal health dimension and it overlapping just like this diagram shows it. The personal health record and what’s going to happen within its dimensions and performance characteristics, requirements, and interfaces, I personally believe is another hugely important development that is just sort of out there.

DR. CARR: I think it was a very powerful theme in the medical home presentations because it really focused moving from doctor-centric to patient or person-centric and the person being the unifying element across all venues.

DR. GREEN: And then the third circle in this figure, you know, the population health dimension, yesterday at the Population Committee we heard yet again about the continued erosion of the public health data system that’s just crucial to everything. But, also we heard testimony where people are flirting with concepts and notions about what could you do with a robust personal health record and what could you do with the data flows through a medical home to help monitor the health of the population and to do early disease detection, do surveillance, do as part of emergency preparedness a lot of the things that the committee has been concerned about over the years.

This helps me sort of feel like we’re not just free-floating in space. It anchors things and I like the way it overlaps the work and connects the dots up.

DR. CARR: Other thoughts? And particularly, I think what I’d like to move toward is thinking in terms of one to two action items that we embrace because it aligns with what the Quality Subcommittee should do and that it is achievable–something that is important, achievable, and support and amplifies work that is going. Our goal is to move something forward. Not to do granular work, not to be out there, but to say if we do this or if we hold hearing to further understand this, we will have moved something ahead. So, I’m putting that out for some suggestions.

DR. FITZMAURICE: I’d like to ask Larry a question and that is as I become smarter by attending this committee and other committees, every time I or my family go to a doctor I ask can I get a copy of your notes, can you copy them, can we have a photocopy of the electrocardiogram? And, they’ve all given them to me, except the doctor that did the cataract surgery said, well it’s $17. plus 75 cents a page. I looked through it, no, I’ll leave it there but I can come back and look at it any time. So, as I accumulate this stuff, I don’t know what’s important and what’s not important to a good physician. So, is part of the function of a medical home being able to–here’s my stuff doc–to come through it and say for this patient at this time here’s what’s important and so I’m going to pull out the summary of what I think is important so that part of the medical home is not just treating me and being quarterback for my medical care, but also treating my information and performing the function of triaging the importance of that information.

I don’t mean without cost, I mean, maybe there has to be a payment from my health plan to cover the research that is necessary for that, but if I get a bunch of papers like people in the military who walk around with their medical record, no doc wants to go looking through that. But, if you pull out the allergies, pull up whatever you consider important, and so I can always refer somebody to my primary care doc to say go to my medical home and you can get my medication list, you can get my problem list, and you can get what my doctor considers important for me. You may have other feelings because I’ve got a special condition you have to look at, but here’s a good starting place. Do you see that as a function of a medical home that eventually may evolve into it being done and perhaps payment for it?


DR. MCCALL: Thank you.

DR. CARR: So this would be a data set. Something along the lines of a new and improved ambulatory data set. Who was saying that yesterday, you?

DR. TANG: I guess, and maybe I especially got this from Barbara who talked about primary care, but I thought it was primary care in the old style and even the word, actually after I listened to the testimony two days ago, I think we have a medical model that’s how we grew up and were trained and I think to call it a medical home almost perpetuates that. So, I actually, I still am so wetted to that questionnaire that the special needs group came up with and the best thing was you have a personal doctor, and let me continue before you criticize that as being a medical home again, I think of that as do you have a place that you would turn to as a gateway to information and knowledge about health and healthcare. And if people could say yes to that, then I think what we have done is we have created a gateway to data for all consumers of that data, which includes the patient, which includes population health, which includes public health.

In that sense, if you look at–and I do really like these three circles. If you look at the intersections, those four whatever you call them, if we created the data system that allowed us to store, manage, and distribute that, then we will have satisfied the other two levels that I talked about yesterday, which is do I as a consumer have a place to go to get data and knowledge and tools to manage my health and healthcare?

DR. CARR: This is, sorry, this is on the last page of the NHII summary.

DR. TANG: Do I as a provider have a good place to deliver care that I know that I’m not missing anything and at the same time I’m creating surveillance for the public health needs of the bio-surveillance needs?

And in a sense that’s a new world. And, this world doesn’t have to be based on an individual like a doctor, a nurse, a public health–it just isn’t based on an individual, a frame of mind that I think comes out of our past. I almost think that we have to reassemble that and in the new world we have tools to reassemble it in a different way. And, I don’t think it has to follow a, quote, medical model or be a medical home, it can be a system of health and healthcare that both is a delivery mechanism and is a data capture mechanism.

If we had that–somebody asked me, well, what about the surveys? Well, if consumers had a place to store or we were capturing that information then either the survey information would be there or that’s the way we would talk to them, communicate with them in a way that it would always be, every day or every whatever. And that’s the new–I don’t think it’s so far off anymore, but I think we’re going to tether or–we’re going to tether ourselves to old concepts if we–names are so important and you know, I’m a member of the ACP, et cetera, and that’s just my learning point from two day ago is we have to break out of the shell of the medical model.

DR. MIDDLETON: I was just resonating with Paul, so sorry for the spontaneous interruption. You know I think that sort of line of thinking is right on that, in a way, we have to be careful about, at a level, the shackles of the prior medical model. You know, whether it’s, you know, George Engel or Winberg or, you know, some of the traditional models that are being, I think, expressed frankly, in the medical home concepts, which I think are the right ideas, but not necessarily taking full advantage of the new HIT or the wired context that I think we’re going to be entering into eventually.

You know, I think maybe one of the committee’s exercises might be to think actively about what disruptive forces are out there and what is disruption actually going to mean. And, I know it’s an overused and cliché term at this point, but I think things are going to happen at, you know, it is hard to predict. For example, if Google Health is successful, if that is the focal point of my information management, collaborate software providers and service providers will do that summation, organization, and prioritization of my information on my behalf and perhaps, never even involve my actual care giver, not to mention a whole host of other services that will arise from those data aggregations.

So, this idea of the info-mediary(?), again to borrow an old internet term, you know, I think is something we actually have to think very carefully about, particularly for this committee with respect to data and quality. Because, it may be that quality is going to be managed by a whole array of caregivers, providers, and services in my home, in my apartment, at my workplace, whatever. The analogy doesn’t work anymore, but that’s what I worry about.

DR. MCCALL: I would like to add on to both of those. I think that we are kind of tethered in the way that you described the concepts of just kind of the medical model. We are as tethered to the term quality today as we are to what you mean there. So, even the term quality, and I respect your remarks earlier, but I had a sense that we need to take a fundamentally different paradigm to what that word means. So, quality could be, in the future it is, in fact, home-based care, it’s independent living, it’s–we’re doing some work with Intel where they’ve got these just exquisite different types of sensors that they’ll put remote in the home. So, quality could be off of data related to that and it has nothing to do with an older or more established medical model.

I also agree with you about these kind of meta-forces and these destructive forces at play. I think that they will be successful, there’s going to be fits and starts and all of that, but there’s nothing like the power of an idea whose time has come and this one has come.

And, there’s going to be so much energy unleashed that it’s one of those things where you go, it can either be harnessed and have steam engines, or it can just be kind of this raw, toxic, you know almost lethal steam that is released. And, I think it would be incumbent upon us to anticipate that and say what are the things that must be in place? What should never be done? What should always be done? What sort of policy and guidance should be given? And, to anticipate where that puck is going to be and to actually have–

In the first bullet point that Harry talked about, which is–this is about information strategy, right? Information that will come online in a way that has never before–it’s unprecedented. So, you had talked about the storage, the management, you know, et cetera, even just the capture. So, I think that that really, it’s one of, I think one of the greatest emerging needs that will be out there and I think the number–the diversity and the sheer number of people that will be working with data and information, some of whom are very naïve, can actually do a lot of harm.

DR. CARR: Well, it also ties to de-identified data because what happens to this data and the data stewardship–

DR. MCCALL: Well, and also metrics. You know, we talk about data, but we tend not to talk about once you have this raw, crude oil, assuming it’s been taxonomies, you know, correctly, maybe it hasn’t–there will be taxonomies, there’ll be folksonomies, all over the place, building a metric how you do it is as important as the data itself. And, I don’t see any forums for, you know, if you want to calculate x here’s–there will be widgets that are developed for that.

DR. TANG: Well, continuing on what she said, even redefining quality because I think there’s a certain contentment, it’s almost a contentment measure. Can I feel like I can go find my healthcare somewhere? So, now you can go to Google and get a bunch of hits, but they’re far from content and we know that they search health, but in the new world if Google Health was the place where you could get guidance, et cetera, that might be a new measure of do I feel like I can address my health needs through one of these services?

The other thing just to pick up, Mary, crude oil and that’s how we relate to privacy which is–and there can be a windfall profit to others who are getting inappropriate access to that crude oil. So, that’s how it cross-cuts NCVHS workgroups. We have to create a new, safe platform for us to access things while preventing these windfall profits from going or data going places we didn’t want them to, just you know, in the name of populations, et cetera. So, it’s interesting, but that’s a whole new platform of strategies for NCVHS to go toward.

DR. CARR: Let’s see, Steve and then Blackford.

DR. STEINDEL: I’m sorry I missed the sessions on Monday and Tuesday, but I’ve heard a lot about them. The word that I’ve heard a lot about those sessions was transforming and transformational. And the summaries that I’ve heard, you know, basically I feel I concur and what I’m hearing around this table is generally a sole sense of that. So, my question to the group is how fast are you going to get this out? And, I think that’s what we need to be talking about because what I’ve heard right now is just variations on the same theme. One of the problems with quality and NCVHS through the years is we have not gotten something out.

DR. CARR: We got a letter out. We did.

MS. GREENBERG: Sometimes not for lack of trying.

DR. STEINDEL: Not for lack of trying, exactly. And, I think there’s a sense around this room that this is something we need to get out quickly.

DR. CARR: I agree.

DR. STEINDEL: And, I think what we need to do is start focusing on a strategy. I mean, there’s going to be a draft and a second draft about what we’re going to say, which is what we’re discussing now is what we’re going to say in that document. But, I think we need to start focusing on getting that document out.

And, as we were talking about something that might influence the change in the administration, this is a concept that could do it and we might want to be thinking about getting this document out, you know, in the December/January timeframe.

DR. CARR: Okay, Blackford?

DR. MIDDLETON: Great thought, Steve, and I guess the thread that I’m going to try to pick up is something Larry and I were actually chatting about last night. I think actually leading, in a way, with the medical home concept in the short term is absolutely reasonable and could be well considered given all of the deliberations that we would do, et cetera. You know, the thought that I want to revisit is kind of, what is the scope of the committee or what is the scope of NCVHS’s purview, if you will?

Part of the conversation we had last night—Larry, I wish I had the tape recorder running, you know, was—

MS. GREENBERG: Oh, wait, I forgot to tell you that isn’t allowed at the dinners.

DR. MIDDLETON: Oh, okay. But, we were talking about kind of the determinants of health. And, you had mentioned, you know, what is quality? You know, when I think about, you know, my patients or my family members and others, you know, what are their determinants of quality goes far beyond what I do for them in the clinic or in the hospital. You know, really the determinants of health go far beyond what we measure in clinics and hospitals. It has to do with environment, it has to do with lifestyle, and it has to do with genetics.

Two thoughts—one is I wonder if the three circles are actually incomplete because there’s a huge environmental determinant of health and wellness that I suggest might be another dimension along with population, provider, and patient. And then, secondly, if we believe this broader connotation of quality actually applies, don’t we need to think about the data requirements and measurement and metrics, et cetera, to help get our hands around it? You know, how is internet affecting health? Do we have any measures to actually assess that? How is the air quality around Nashville affecting the population health there? So, anyway, I just want to ask is if the broader connotation of quality is within our purview or not?

DR. STEINDEL: We’ve always assumed it was.

MS. GREENBERG: I mean, this is a committee that was proposed by the World Health Organization, whose definition of health is, you know, as broad as you described.

DR. CARR: So, yes, in this update book the center is the population’s health, the next circle is community attributes and these include biologic characteristics, social attributes, health services, economic resources, population-based health programs, collective lifestyle, and health practices and the final circle is context; cultural context, political context, natural environment.

DR. MIDDLETON: You know what I’d love to do with this one, though, is put the patient back in the middle or the person. It is population which, you know, how does that relate to the average citizen?

MS. GREENBERG: Well this was from the 21st century vision for health statistics.

DR. CARR: So, I’ve heard two kinds of perspectives. I’m very engaged about this disruptive Google Health model and others like it, that are doing many of the things that we heard about in the medical home, that it is person-centric, it aggregates many inputs, it empowers the person. And, it is new and it is not covered by HIPPA, is not bounded, there are no rules in this space. And so, in many ways, I think that for two reasons it aligns well with the role that we can play because we can comment on the value added by it and we can alert on the risk engendered by this model.

DR. MCCALL: And I think the timing for that is good when you think about the administration and some of the pressures coming up. Even the opportunities and the pressures within, I won’t call it health reform, but it will be healthcare financing reform. There are opportunities even within that as changes get made, within that piece there’s the always do, never do. If you do x make sure to always do y. But, there’s also some Trojan horse opportunities with respect to information, information strategy, to kind of jump start these things. So, I think the timing of this is extremely good.

And, back to the point about, you know, all things, you know, Health 2.0. You know, there are no rules out there right now and so it’s in that context where it’s great to say always and then nevers in terms of the rules of the road for people who want to play in this space.

MS. GREENBERG: I just wanted to, in case you haven’t seen the full model, population health actually within that includes disease, functional status, and wellbeing and then level and distribution. So, level could be at the individual level, but distribution really gets out a longstanding interest of the committee, which is disparities.

DR. CARR: So, who was next? Paul?

DR. TANG: So, just a comment. I think we’re on to something and I think we’re on to something big. Just to comment on the timing, last time, in fact this is even in the minutes, we talked about the data system for healthcare reform and I used the term reform and there was a big objection to that word.

MS. GREENBERG: But, we agreed that we would use transformation.

DR. TANG: Okay.

MS. GREENBERG: I think I changed it in the minutes, actually.

DR. TANG: No, the minutes have reform.

MS. GREENBERG: Yeah, but then I think I subbed in transformation.

DR. TANG: But the point was that actually the words were that we shouldn’t get ahead of the change in administration. So, for example—well, there’s two pieces to the point. One is I think there’s a difference between being lumbering and being thoughtful and this is such a new concept that I think we want to be thoughtful without lumbering. And, I don’t think, for example, December would be—that would be ahead of it’s being able to be thoughtful about it. And, it’s probably ahead of where the new administration would want to receive it.

So, I think whatever it is, the first quarter, the hundred day thing, if we met that that would be just fine. Or at least be talking to them. You know, we have our various personal routes of reaching them, but I think we would definitely want to be thoughtful about this and I think we’re on to something that, again, cuts across all workgroups of NCVHS if we paint it so, paint the vision so and understand the components that have to be there. Because there are definitely web 2.0 sites that are a real rip-off of consumers in the name of consumers.

DR. MCCALL: Well, and I’m not even sure that we could go to that n-deliverable in one step. There may be some things that came out of, you know, secondary uses around uses of de-identified, but also data stewardship, which is really what we’re talking about.

DR. TANG: Yes, the stewardship is key.

DR. MCCALL: It’s the stewardship piece around the data, but also the metrics and then the kind of, not just the soft kind of stewardship aspects, but the hard legal regulatory aspects that are going to take a while to—where those foundation pieces get laid, that takes time/energy. That might come out by the end of the year, even if we ran like heck. And then on top of that, or as a result, with those as scaffolding, you know, we might be able to do some things that are more specifically addressed to this 2.0 world.

DR. CARR: Blackford then Marjorie.

DR. MIDDLETON: You know one of the vulnerabilities I have, which I’ll reveal now, is that, you know, all the times I think actually thinking strategically about IT, quality, and healthcare and all the rest of it, you know, the usual mantra is get your business problem, get the business monster, identify the issue, then apply technology after fully considering all the issues. In fact, though, I think, you know, there may be a paradox here that absent a complete understanding of the IT potential, the new business models can’t be understood. It’s the other way around. And, I think that might be part of our opportunity to go beyond the 21st century vision, describe, you know, a wired healthcare environment completely, you know, thinking about disruption and all the opportunities that might exist, and then work backward. I mean, maybe it’s been done and I don’t know about it.

DR. CARR: No, I think it’s interesting and we’ve been talking about do we update the statistics report for the wired environments. So, it’s kind of interesting. Marjorie.

MS. GREENBERG: Yeah, obviously part of what’s on my mind is the 60th, working towards the 60th anniversary. And, I just had a thought, we can talk about it later, but related to all of this and related to the timing thing that it’s all been in my head and as we’ve been talking about it over the last, I don’t know, six months, it’s all been focused on the event. Like we had a 45th anniversary event, we had a 50th, and we have a 60th. And there will be that culminating even, but the way a lot of groups seem to now be recognizing these kind of milestones is a series of events and kind of incremental events. I mean, like, it’s like a year long thing or a year and half long thing and I’m just thinking that if we could conceptualize this, sort of the theme or the themes that we’re talking about and bring in the entire committee and then have some different milestone events so that we could do something by the first of the year. I mean, it is 2009, which is 60 years. We could have something ready by then and then we could ultimately have the big part, the thing at the National Academy or whatever in June of 2010, but have had a series of things around the theme going up to then.

And, I mean, like just reminding me when I looked at that is the functional status. Well, that’s something that the quality workgroup and populations, you know, they did their kind of seminal report back in, I don’t know, 2001 or something on functional status. But, every year—I just want to put this out just so it can be percolating in people’s minds, but every year the North American Collaborating Center, which is one of my other hats, we have an annual conference on ICF, the International Classification of Functioning Disability and Health, which this committee has actually endorsed in a few different ways. But, we all know that there’s precious little—I mean, talking about walking away kind of expanding the medical model, there’s very little information collected about functioning and environmental factors, which are part of that classification, which we’ve also mentioned here and which are very, I think, critical to health and wellbeing.

Well, in 2009, next summer, we’re going to be having our 15th annual conference on the ICF. And, one of the things that I just wanted to put on the table and just think about was we’re going to have it in Washington DC, every other year it’s in the U.S., every other year it’s in Canada because of our collaborative centers for the two countries, and I was wondering if in some ways the National Committee wanted to partner with us on that conference. There’s a lot of good stuff going on right now in research, et cetera, on functional status, but it hasn’t really permeated the care environment.

DR. CARR: I’m going to part those two ideas on the kind of long-term what we do want and hold those thoughts and then come back to a little bit more, Garland, a little bit more about this idea. Garland and then Mike and then Larry.

MR. LAND: I’m kind of a concrete person, very focused, but one of the things that happened in those two days was that several of the presenters walked us through a very specific example of a patient to try to inform what a transformed system could look like. And, then, the other thing that I found interesting was that somebody mentioned that a survey has been done, says how many people know what a medical home is and it’s a very small percentage of the population, which isn’t surprising. But, I guess what I see is that if we’re going to try and educate policy makers or anybody else, having some concreteness of a vision would be very helpful saying now, this is a vision for what could happen. It may not be here yet, but there’s a lot of bits and pieces out there that are going on that says that this is quite possible and compare it with what is happening now in the clinic operations that we have now, so you can see what a system could look like in the future if efforts were driven there as opposed to what we have right now.

DR. CARR: So, just if I can kind of, I think what we’re on to that resonate very much with Monday is just patient-centric or person-centric health, enabled by IT. And, a piece of that is the medical model, but if we look at these diagrams it’s beyond that. And, even in terms of functional status, it’s so hard to get except if a person enters can you walk upstairs, can you fix your own meal, whatever, that’s your most reliable data, better than you’ll ever get third hand from a provider. So, it’s just, it’s the person-centricity in the medical suite and in the community.

Alright, I have to honor my order of things so it was Mike and then Larry and then Carol.

DR. FITZMAURICE: A lot of good ideas are floating around the table and starting with Steve’s idea of let’s get something out and let’s get something out soon, I’m thinking we could put out a report on the medical home. We could add to that issues that NCVHS considers important in quality, so then we have something and a couple paragraphs at the end of that something that the medical home hearings that informs an administration coming in. It doesn’t give them the answers, but it gives them the issues and some of the features of those issues. We could do it in conjunction with the AHIC quality work group, I’m assuming that it will still be around, or we could do it apart from the AHIC quality work group. It depends on how the powers that be want to play it out. But, it could come out pretty quickly, we just had the medical home hearings and we can get a report from that. We could add to it thoughts of the people around the table in terms of issues. Over the summer people could add issues, people could do some wordsmithing and I bet by—when do we meet again, September/October?

DR. CARR: September.

DR. FITZMAURICE: We could probably review a draft report, maybe make it final, and get it out before November and certainly before January.

DR. CARR: Yes and that, we talked about that yesterday in populations. That is our goal. Susan is going to work toward getting some bullet themes together to begin to organize what we want to summarize and say. And, I think, most importantly what areas of focus come out of that that align well with the resources and the attention of NCVHS.

Let’s see, Larry?

DR. GREEN: Well, I’m going to just keep going from Garland to Mike, get very concrete. I think that we should publish a report, have a draft of it ready for review by the September meeting that’s based on the hearings that lay out these issues that we’re rehashing again right now, but that we use the report to funnel toward actionable steps, possible next things and we use it to help us construct our agenda for future work, that sort of thing.

To cartoon it, we know that there—and there are a lot of issues about how does all of this get pulled together in a way that’s meaningful to a person? And, Mike started us off there 30 minutes ago saying how does this all get prioritized? I’ve got it all. You’ve got the most fabulous information technology available, I’m a player, I’m empowered, I’m insured, I’ve got it all, now what do I do?

What Webster defines integration is the pulling together of apparently disparate parts into a coherent whole that has meaning. And, one of the big ideas is as we transform this healthcare delivery system, will there be a point of integration and if there is what is that point? Will there be multiple points of integration? What are they? Will those multiple points talk to each other in some way? What will the data flows be that allow integration to occur?

So, that leads us then to where we’ve already been; data stewardship. Oh my God. We concluded, I think quite forcefully, that if you violate the trust of the American people and you do so publicly that you could set back the transformation of healthcare into the information age by decades. So, trust and security in combo, you know, we’ve been there, we’ve agonized over this. So, data stewardship is going to turn out to be crucial.

Then to be very specific, like Garland was asking us to be, we know that there are holes in our measures. And, we’re getting some of them identified and one place for us to go to improve quality, and whether we put data in our name or not, is where are the data that we’re going to need know whether we’re moving in the right direction or not, whether people like us or not, whether it actually generates health, whether we’re going the direction or not? We’ve got some holes in that that we don’t think we’re going to be able to know that unless those are repairable. That’s our purview in my view. We should step up to that plate. And we also don’t have the ordering principles straight and that’s my definition of the classification is a set of ordering principles, so—

DR. CARR: Say more about that, ordering principles.

DR. GREEN: We don’t have—

DR. MIDDLETON: A value structure?

DR. FITZMAURICE: Principles that let us do what?

DR. GREEN: Integrate a normal human being’s healthcare in a way that improves their life. What are the principles that we will adhere to in the transformed system? How does that look?

So, to cartoon it again, we are full of disease-management language, diseases and doctors. What we’re saying is we want to bring people, put the providers in a supporting cast-player role, and take advantage of this transformative moment to elevate people in a way that improves their health. So, an ICD that, you know, keeps morphing as knowledge morphs and keeps moving along—

MS. GREENBERG: It’s not morphing fast enough.

DR. GREEN: That’s what I was about to say, but it’s not morphing fast enough to keep up with this transformative change.

In my view, we can respond to Harry. Our near-term is get this report out, use that as a way to argue it out amongst ourselves, try to drive that report down to some—you know that report could end with some recommendations about we need to pay attention to this, this, and this, and I think our agenda for this aspect of the committee’s work we could define and have it ready in September. Am I naïve? Do you think I’m pretty naïve about that?

MS. GREENBERG: No, no, in some ways it takes us back to Lisa and Cathy’s vision of you start with what do you want to know? What does the person want to know? What does the community want to know? And then, you know, you build it down.

DR. GREEN: How is this going to work? I mean, just envision how it’s going to actually work and say what do you have to know to be able to do that?

DR. CARR: Okay, I’ve lost track of where we were. Was it Carol and then Blackford?

DR. MCCALL: I would suggest that we create a plan that does essentially three big things. And, I think it begins precisely where you said, Larry, where there is an opportunity to create a report on medical home, talk about quality, and in addition to creating that output, identify some initial themes that we will then move forward with. So, I think that that’s the first one.

I also, what’s resonating a little bit with me is, and I’ll put this in quotes, an “update”; to the 21st century, but the update is intended to say what it looks like in this wired environment. Because, I think if you hold up that picture—and, update doesn’t do justice because I think it really needs to be sort of a shock and awe that says guys, you may think you understand this picture, but I promise you in this new world you do now.

And, it goes back to what you were talking about, what that’s called is a storyboard, which is to say in this new world let me show you the diagram, which gets a little abstract, but I can show you all of the stuff that’s coming online. I actually created, believe it or not, the very storyboard that you’re talking about. We had some people in from a company that are creating a health wiki. And, it’s an open yet secure so it involves some very delightful uber-geek squad encryption technology, but it’s a health wiki built off of the media wiki platform and it will be for consumer health. But, there’s a lot of other companies out there, 23 and Me and Patients Like Me and Kias(?) and all of these are in addition to Google, but Facebook come online and then Trill and all of this independent living and we’re going to censor the crap(?) out of everybody.

But, that’s the shock and awe and say imagine this world when it’s all up, all of it and data is coming literally at the exabyte level. Okay? And it brings new challenges. Forget about the giant data warehouse in the sky. Nothing will manage it. I’ve talked with people that are working on autonomous sensor communities where the intelligence, the AI, is distributed everywhere.

So, you create that picture and everybody kind of goes, huh. And you go, okay, let’s bring it back down because it’s not here yet, but it will come. And so what are the needs in this environment so that it’s not the raw steam that will burn everyone? And then, create some reports to say to begin here are some things that we must make sure to always do and never do and those become specific recommendations timed for a new administration.

And then, you also, this will take about a year and a half and if we want to open champagne bottles at the release of the last one at the anniversary event then—but those are kind of three separate things. So, the update piece, then the needs, which cascade into maybe one or two very specific, but meaty recommendations.

DR. CARR: So you’re saying the first is medical home summary, the themes, the second is update the 21st century’s shock and awe about the new wired environment, and the third is needs in that environment.

DR. MCCALL: Needs in that environment which—the third is really the needs would cascade into maybe one or two very important things that would go into very specific recommendations, right, for a new administration.

DR. CARR: Great, Blackford?

DR. MIDDLETON: I have to write it down so I don’t forget. You know the—I guess the thought crossing my mind, one of the threads is about the data and I think we have to think whether or not we only need to talk about data or do we need to talk about information as well? And maybe, even, information is the actually the more appropriate term.

DR. GREEN: It is.

DR. MIDDLETON: Because data is the unformed construct, whereas information is the formed construct.

DR. MCCALL: But then we could have a great acronym, which is The Subcommittee on Quality Information and Data, which could become SQUID.

DR. MIDDLETON: Acronyms aside for a moment—

If you follow the progression, you know, and this is from some other funded — or whatnot, data, you know, information is knowledge because, you know, we’ve been talking about quality as the thing of most interest, but quality is the outcome of the healthcare system. But, I worry are we measuring the inputs to the healthcare system? That is participation environment, all the stuff we’ve been talking about, but knowledge has a fundamental input because the way we manage knowledge is going to be changing dramatically. There’s no way we can know everything anymore, we have to use the tools, be enable and, you know, be networked and the rest of it.

So, the idea, you know, comes to mind—I think all these issues taken together, and we talked about this last night, in a way if we’re really trying to design or characterize the problems and provide input to the design of a new healthcare delivery system, given education, given data management, given wired for health, and all the rest of it, are we really talking about a Flexner 2?

You know, 1910, Flexner Abraham came out with the report which characterized the poor quality of American medical education, but in there he actually talked about knowledge management, data management as well. I think at a level, we’re at that kind of turning point where, you know, sort of a Flexner 2, whatever that actually means, is something that people would actually get their hands around for sure.

It would put into the context of an entire redesign where does medical home fit, where does social networking fit, where does the evidence from the consumer without RSVT’s fit? All these kinds of issues have to be considered.

DR. CARR: Steve?

DR. STEINDEL: I was listening to everything and Blackford kind of just crystallized my thoughts and we were talking about the 21st century report and picking up on that and talking about this consolidation of ideas and then pointing out what our work plan is going to be and everything. And, what Blackford really keyed in on is if we actually look at the NHII report, which is the way we colloquially refer to it, the title of it is Information for Health. And, I think what we’re really talking about is the update to this report.

MS. GREENBERG: Well, we were talking about doing them kind of together, but in a way that didn’t kind of step on ONC’s(?) feet. That might be a little crude the way I put it, but I think there would have to be some kind of linkage there and even the proposal we got from Dan Freedman noted that – to do them together.

DR. STEINDEL: Well, let me discuss further, Marjorie, if you don’t mind because what this report did was it set the stage for what’s going on now in ONC and if we extend this report and extend the ideas like we’re talking about, we are now saying, okay, we have the NHIN working, quote, unquote.

We’re getting in all this stuff. It’s being organized, it’s being housed and what we’re talking about in the sequel to this is now what can we do with it? And, this report really didn’t talk about the roles that were assigned to NCVHS. This report talked about what needed to be done in the community at large and made very specific recommendations through the breath of the healthcare system from levels in the government all the way down to providers and local health. And, I think we need to think about the report as being that type of transformational report, coming out quickly with a stage setting because the first version of this report was very, very short and came out quickly about two or three years before the full document came out.

DR. MCCALL: Really?

MS. GREENBERG: Well, we had the interim and then we had the final.

DR. MCCALL: So, it was just kind of a fleshing out?

DR. CARR: Paul? And we’re at the 9:30 point, I’d like to end at a quarter of ten. So, what I want to do is hear what Paul has to say and then get this into some action items and we’ll reflect back on this two weeks from today –

DR. TANG: I’d like to continue where Steve was, which is—first I’d, you know, sometimes I’d almost say the next report is the emperor has no clothes.

DR. MCCALL: Are you going to be the cover for that?

DR. TANG: I guess that’s where I’m at with listening to the discussion. It’s, one, the medical home thing is the emperor has no clothes. Two, that this actually was really transformative and that we can very much pick up on this. And, unfortunately, to pick up on what Marjorie said, I think this is another way of saying the NHIN emperor doesn’t have clothes either. So, we have a lot of naked bodies out there and, in a sense, we’re back at Adam and Eve and we want to start putting it together in a way that makes sense in the real 21st century. And that’s sort of the theme I think. And, I mean, we have to be more tactful, but it’s not exactly—I think we’ll be very incremental if build on these naked bodies.

DR. MIDDLETON: You know, if you look at the arc of healthcare in this country, oh, if we don’t identify the fact that the emperor has no clothes, or that all of the pieces aren’t congealing to work, you know, the system will fail before we have designed the replacement.

DR. TANG: I mean, where we’re going—NHIN doesn’t give us this. It just doesn’t. And, I don’t think we can come out in September to be able to say things like that. We have to be real thoughtful on how to reconstruct it, basically, before we get on a plan of trajectory that’s not going in the right direction.

DR. CARR: So, alright, action steps, things that we do to put out in September. So, we heard the three themes that Carol said and now I’m trying to overlay—

DR. TANG: Start with number two, I think it’s update, right? And, the thing I would update is this thing because, first, we’ve done it. And, how do we apply the new environment we live in? And, it’s so new from even this diagram, it really is, but the concepts were correct for this one. How would we overlay that onto here and describe the new environment? So, we don’t have to directly comment on these other folks, but we could just leverage what we have in the new world and then evolve a vision that actually, I think, is more thoughtful, integrative, and transformative.

DR. CARR: Okay.

MS. GREENBERG: Would you consider updating, kind of, the two of them together?

DR. CARR: Let’s put that on the table. There’s more work that needs to be done, but I want to sort of get the benchmarks. So, the question is we need to update—both of these are in need of update. What’s the work of this group? So, we need to come back to that.

Alright, so we have those three themes then we have Flexner 2, knowledge and data management—that’s part of that.

DR. MCCALL: Well, but that may be on—your point earlier, which I thought was really well taken, which is don’t try to do it all in one bite. Start with something fast, get out of the blocks and then maybe it’s this broader—

MS. GREENBERGS: Or a series of events.

DR. CARR: Then also where—we were very animated about the disruptive technologies that are out there, Google Health and so on, and what that means for our—what value will it bring, what danger will it bring?

DR. TANG: But that’s solution ahead of concept.

DR. MIDDLETON: Say again, Paul?

DR. TANG: I think that’s jumping to the solution without looking at the concept that we’re trying to flush out. It think we need to flush out the concept first and I think we can also make the same mistake and go after another emperor with Google.

DR. MCCALL: Oh, those are very early technologies. They’re not even freshmen yet. I only put them out there because I want to back to what Garland said, which is some of what we may be talking about as we flush these out may be a little abstract. And so, the only reason for bringing these in is to say they’re very early technologies, but let me tell you a story and let me make it very real for you and weave something together. They are not the answer, but they’re the beginning of something that will be—again, it’s unprecedented.

DR. TANG: It’s just easy to grab onto fads and I think that’s one of the human tendencies because Google Health is not going to help Senator Kennedy. The health profession and the science behind it is needed too. And, if we jump too much to that solution, we’ll have forgotten what science has brought to us. So, we have to find—that’s what this is so important about.

DR. CARR: So, how are we going to get this work underway? I think for Blackford’s sake, often what we do is work with a draft document, a conference call, for the revisions a conference call. So, that kind of developing concepts in a report is work that we can do with conference calls. So, in this is there anything about hearings?

DR. MCCALL: Yes, what happened to that? What happened to revising a report–

MS. GREENBERG: About what?

DR. CARR: Hearings.

MS. GREENBERG: Oh, hearings, I’m sorry. Paul?

DR. TANG: I was a little late.

DR. FITZMAURICE: But, we’ve already had the hearings, right? So, we have something to start off with.

DR. CARR: Right, so on the medical homes we’ve had the hearings. We’re talking about near-term.

MS. GREENBERG: I see more like workshop consultation.

MR. TANG: I almost see a workshop of relevant parties of this group to go update this. So, this is fairly timeless and if you want to bring this into a time relevancy, we may want to find the right terms, the right approach to address today’s crowd, which is policy makers, et cetera. And then that will be a leapfrog.

So, we had the hearing on—we’ve had continuous hearing on, quote, NHIN. We’ve had the hearing on, quote, medical home. And, we had the meeting that generated this. I think we’ve had the hearings, I think we need to create the new vision.

MS. GREENBERG: And bring in maybe, I mean we could bring in some former, I mean, like, Dan Freedman, who worked on, actually, both of these visions. We could bring in Don Dapmer(?), some of the people form the committee. Also as part of the, I’m really getting into about the series of events, but, you know, bringing in some former members who have really contributed significantly to these visions, plus some people, you know, some thought leaders out there who have sat on the committee. What did you say?

DR. MCCALL: So long as they understand that we’re trying to move forward. I don’t want them to feel so anchored to the way things are.

MS. GREENBERG: No, no, I don’t think they would be.

DR. CARR: So, again, without getting to the details, the plan will be to do some preliminary work with a goal of having a workshop.

DR. TANG: I don’t know that we need the workshop.

DR. CARR: Well, I thought you were just advocating. So, we don’t need a workshop?

DR. TANG: Well, it’s a working group, a work group. We need to flesh out the new—then Susan creates the draft that transforms into something readable.

DR. CARR: So, it’s a conference call? I’m just trying to think in terms of planning. Are we looking for a day? If it’s conference calls with drafts.

DR. MCCALL: I would have one or two preliminary calls so that we can get our minds around it that lead up to a face to face.

MS. GREENBERG: I’m wondering, too, if we’re talking about an executive subcommittee retreat in North Carolina in July.

DR. TANG: North Carolina?

MS. GREENBERG: Well, Raleigh Durham.

DR. TANG: How did we get to North Carolina?

MS. GREENBERG: Because that’s where the Chair is. What’s wrong with North Carolina?

DR. TANG: In July?

MS. GREENBERG: I don’t think it’s that much worse than Washington, honestly. But, anyway, we could add a day onto that to–

DR. TANG: I think that’s right, well, before that I would say because I think this is really organizing .

DR. MCCALL: We don’t need to go around the executive subcommittee meeting, do we?

DR. CARR: Yes, no, I don’t know that we do.

MS. GREENBERG: No, but I’m trying to like, you know, like maximize travel. So, you’ve got a few people who are already going to be there and then bring in the additional people.

DR. STEINDEL: I would think, Marjorie, if you’re going to have a face to face we’d hold it with the September meeting. I think we can handle everything else up to that point with conference calls.

DR. CARR: I think we need to get to work and see what we have and if it becomes clear that we need a workshop then the timing could be dictated to work around that.

DR. GREEN: I agree with that entirely. To use an example, when you go back to the hearings, when Michael Klinkman put his example of a real live patient up there about how it happened and how it could happen, then the guy from AHIC, Marjorie captures this, they’re exchanging slides. They then put up there in red the gaps, the holes, how this couldn’t happen. All of a sudden everybody just went caching, you could just see everybody wrap around where we needed to go next. I think that will happen if we follow this plan.

DR. CARR: Okay, so, we’re going to begin with some calls that we’ll set up. And, will all of those PowerPoint’s be on the web? Okay, where do you find them?

MS. GREENBERG: You go to the calendar where the meeting is and then the agenda. You click on the agenda and it’s with the agenda.

DR. MCCALL: Let’s all come prepared.

DR. TANG: We’ll all read this and we should come up with the bullet points on how to either update it or bring it to 2010.

DR. CARR: Right, we’re going to review NHII, review the 21st century visions, and review, for those who were not at the medical home hearing, those slides will be on there. There are some that are extremely bring-you-along, there are others that you may want to skip because while interesting—

MS. GREENBERG: There’ll be a transcript, too. We’ll post that as well.

DR. FITZMAURICE: Are those slides up there now?

MS. GREENBERG: I have the transcript. I would hope they would get the slides up next week.

MS. KANAAN: 350 pages.

DR. TANG: The transcript?

DR. CARR: When will the transcript be available?

MS. GREENBERG: No, the transcript it will be a few weeks.

DR. TANG: Can we get the audio?

MS. GREENBERG: Well, you can get the audio sooner if you want it.

DR. TANG: I would rather have the audio, actually and somebody telling me which audio to listen to.

DR. MCCALL: Right, then do it with the slides.

DR. CARR: Alright, well let’s work on that offline. We need to have access to more information about the medical home hearing. Alright, so that will be our work plan for the summer. There are other parts of this that we didn’t fill out, but is our name SQUID?

MS. GREENBERG: So, you don’t want to meet this summer?

DR. CARR: Well, I think let’s see.

MS. GREENBERG: Let’s see.

DR. TANG: We could meet in August.

DR. CARR: Alright, well, we’re SQUID for now, we’ll try it out. Try it on. Okay, thank you for this energizing, wonderful discussion. I look forward to working. And Blackford, by being here the amount of time you were, you actually have become an official member of this committee. You exceeded the time frame, now you can never leave.

(Whereupon, the subcommittee adjourned at 9:55 a.m.)