[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
EXECUTIVE SUBCOMMITTEE MEETING
September 16, 2010
Embassy Suites Crystal City Hotel
1300 Jefferson Davis Highway
Arlington, VA 22202
CASET Associates, Ltd.
Fairfax, Virginia 22030
P R O C E E D I N G S
DR. CARR: So we have a couple of goals this afternoon. One is to get a sense of our work plan, where we are, and prepare probably for a fuller discussion of it on November 30th when we meet again. Also, as part of this work plan, we want to talk about interface with ONC and the FACAs, as well as the Element 3 work that will be coming up and some other areas of interface.
But I want to just take 15 minutes to reflect on my first meeting. I am having fun. You know, I love all of you and I love working with you, and I think what’s so great about this committee is the ability to come together collectively.
But I’d like to just put out there, what are the kinds of things that help us do our work better, and how do we work most efficiently? I mean, I have some ideas that I’ve already hoisted on people, and I’m interested in feedback on that. But I think what I realize is we met in June. We had a huge work order, and we came down to the deadline. And as we approached the deadline, I think there was a lot of space in between that I feel that I could have been more helpful both to standards and to privacy.
And so I want to think if we want to codify in a way, how do we setup the time frame so that we can get broader input and make sure that we have consensus or agreement at least coming out of the subcommittee.
DR. WARREN: So, one of the things as I look back on the task that Walter and I had, we were given an incredibly short time frame. So we had I think about four and a half months from the time the law was passed to the charge, and then the deadlines that we had to make in order for CMS to make their deadlines of writing regulation and putting it in the register and all of that.
We got to work fairly quickly. The things that worked well for us is we were able to contract with Margaret A. to do a lot of heavy lifting by doing an environmental scan for us. Lorraine was absolutely incredible to work with as our senior staff person, knowing who to contact, taking names that Walter and I fed her and helping us come up with an agenda that would do work.
We were also fairly flexible in our agenda. At one point the agenda kept morphing about what we did. And so we had some interesting lessons learned that we want to try out again to see if they really work or if they were just artifacts.
Once we had the hearings — so the hearings were mid-July. And I think between Lorraine, and Margaret, and Walter, and I, we took probably about two weeks I think to digest what we had. And just to let everybody know, we did have printouts at those meetings. There is a stack about this high — they still sit on my desk — of incredibly detailed technical information as well as wishes, whims, and desires on what we would do with operating rules and NIDs.
Margaret was able to — we had talked briefly about the recommendations that we saw coming. Margaret did the heavy lifting of drafting a letter, and then we started crafting that. We were crafting that right up until the first of August — or was it the middle of August?
DR. SUAREZ: Middle of August.
DR. WARREN: Yes. And so we spent a pretty intense two to three weeks of crafting that, and then we brought in the committee. On hindsight, we probably should have brought the committee in earlier, except the work that Walter, Lorraine, Margaret and I did, I think — it’s hard to know since you can’t go back and do it the other way, when to bring in the subcommittee and when not to.
So we then had a meeting with the subcommittee, and we began to realize we didn’t have as much consensus as what Walter and I thought we had. We started working through that, but in order to make it for this meeting, we also had to get the letter to the executive subcommittee. And I think we had like a week between when the subcommittee met on the phone and when the executive committee met on the phone, and then we encountered the same problems again of, you know, what’s the level of detail that needs to be communicated here? What is the best strategy?
And so Justine really helped Walter and I think through our process. So her suggestion was, after our subcommittee met, was that we prepare slides for the executive subcommittee. And so we did that. We still ran into the same problem of trying to help people get onboard what was required. And then again, you know, coming to this committee with letters and fairly short time frames.
Now, one of the recommendations that Justine had made to the executive subcommittee was to come up with a set of slides on key issues. We did that here. From my perspective, that was a good first try to use slides to introduce a letter. There are some things that I would make different in them, having seen how the full committee interacts, and the kinds of information they need. We were trying to make the slides just as terse as we could, and I think if we’d had a little bit more background information in them it may have helped some with people understanding it.
So those are things that I think from my perspective were very helpful. Now sitting through yesterday and today, I’m still not sure how we need to process letters. I think with all of the work that I know at least Walter and I have because of ACA, we’re still on a very tight turnaround. We’re on to the next operating rule in December. We need to find a way to get through these letters that’s much more rapid than what we have. And I’m not sure what that is, but I don’t think we have the luxury anymore that we used to have going through line-by-line and editing that we’ve done in full meetings. So, we might want to look at our process for managing letters. And I’ll let Walter talk about his —
DR. SUAREZ: No, I think we had the somewhat fortune, but also the curse of having very defined responsibilities under the law. At some point we even had to go back to that and read it and review it and clarify it, because we were thinking differently from what we realized we were required to do under the law. So, I think that is the first lesson that I learned is really to go back to the specific scope of what you are supposed to do and focus on it.
The second one is, particularly with standards, I think — and it applies probably to the other committees if I may say so. I think we all have very different perspectives and experiences and expertise. So, when we stated to discuss specific elements of our recommendations, we realized that wasn’t really being heard by many people because there was not the base background about what is this all about.
And so I think it’s going to always be helpful to, at the very beginning, spend 15, 20 minutes to do a quick 101 for all of us on, for example, the HIPAA transactions. We’re talking about health plan ID. Where does that go in the standards? Not everybody knew or understood necessarily where they go in the standard, what are the standard elements in there.
So I think it will be helpful to always spend 20 minutes to do a quick review with the full committee on this is the background about what we’re going to be deciding. And as Judy mentioned, I think the presentation is always going to be very helpful to introduce the letter before jumping into the letter, because we tend to read in the details of the lines of the letter without stepping back and understanding first what is the context, I guess.
So I think that was very helpful. I would also do the presentation a little bit different. I think part of the reason why we had some issues as we were building into the final discussion of the letter was because there was not good understand among everybody about some of the basic core technical elements, not understanding X12 and NCPDP standards. I think that’s going to be helpful.
And moving forward I think it’s going to be very helpful to have a master calendar of timelines for each of us. So we know that by this day we need to have completed this. And we’ll realize how tight the timelines are because it’s going to be weeks and days instead of months. But I think it’s going to be helpful to lay out a concrete timeline for each of the projects we have ahead.
DR. WARREN: The other concern that I would add to that, I mean, Walter and I can sit down with Lorraine and give the executive subcommittee our timelines. But the issue is, because the law has very specific things they want the committee to do and dates that they are due, we really don’t have the time to do the other stuff that we would like to do to get ready and vision for the future.
So we’re somewhat concerned that, you know, this committee has always tried to look and be more strategic. Right now we’re functioning more tactically, more reactively.
DR. CARR: I think that’s a perfect segue into our next thing. So these are very helpful. Now I’m going to turn to Leslie and say the same thing. What are the lessons learned that we have coming out of getting the privacy letter together?
DR. FRANCIS: These are just sort of process type lessons learned. So, I guess the first thing I would notice is that conference calls are really hard to schedule. And it is very important that we be able to try to figure out how to communicate effectively with each other sooner rather than later. And I don’t know whether the use of asynchronous methodologies might not be a good idea sometimes — Dropbox, or a blog, or something like that that we could all get into.
I find email isn’t the best because it sometimes — I mean there was a point at which I lost track of a thread, and that was not a good thing. Or I wasn’t sure what was being asked for. And the reason you guys got — and I take full responsibility for this — I didn’t realize there was no official draft. There were a bunch of drafts floating around, which didn’t all had the same comments. I thought somebody just wanted to know were we getting close, so I sent a draft. And suddenly it was around the committee as though it were an — and I didn’t mean for that and felt really bad about that and apologize.
More than once we had conference calls scheduled, and either something came up for somebody at the last minute and they weren’t on the call, or they’d be on the call for part of the time, but not all of the time. And we’re all really busy, so that’s just a fact of life. So, my view is that we ought to try to figure out some kind of workaround strategies for that, because the sooner we can talk to each other about laying out the basic structures of what we want, or if we have some disagreement about what we think we want, the sooner we can recognize what we’re going to have to try to resolve or figure out, then the better off we’ll be.
There were times when the earliest we could try to figure out a conference call was six or eight weeks later. And then, when we did pick it, people couldn’t make it. So, I wondered why did we wait six weeks, because at the end of the day we didn’t get what we’d hoped for.
DR. CARR: It is interesting because you and Walter kind of did the teeing up, and then we had the committee work. So there are tensions on that side because it goes farther along, but if you wait for the whole committee, there are tensions on —
DR. FRANCIS: Yes. Maybe the thing to do would be to have the co-chairs tee it up in a circumstance that everybody can then comment on, but not like it was a draft we were commenting on, because that makes it look like it’s reified.
DR. CARR: As I listen to what you say, I mean, knowing who your audience is and what your charge is I think is very important. That’s a good point, and it’s very specific in your case. But I think that we sort of came to that here because there was I think confusion about the charge, the history, and the audience. So I think that’s a very good thing.
And then the kind of teeing up the concepts, this is a charge, and this is what we heard, or where we think we’re going. And that’s what I’ve found, because trying to get up to speed on the standards things and understanding that, I mean, I was among the 101 remedial students on that. And so I think having something out there that can get people on to the same page was helpful. And I think it’s true as well with all of the committees.
DR. FRANCIS: One other comment that I thought related to that is that I thought it was enormously helpful to have conversations both with Devin initially on the policy committee — this is a good lesson learned — and then through the Tiger Team discussions to have very open communication with what was going on elsewhere around —
DR. CARR: That’s I think a very key point. I think where CMS was working step for step with you guys; I think the same thing with ONC. So who is privacy committee liaison from ONC?
MS. BERNSTEIN: Right. So this is actually, the question points to one of the issues that we’ve been dealing with, which is that the ONC advisory committees meet much more frequently and much more regularly than we do. And they have — from ONC they have dedicated staff that pretty much spend most of their time supporting those groups. We don’t have that on this side, so for me, in theory I’m the liaison, except that —
DR. CARR: Not from ONC.
MS. BERNSTEIN: No, from ONC to us — at the moment. You said from the privacy committee. You mean from the Tiger Team?
DR. CARR: No, who is the liaison, is Devin McGraw the liaison from ONC?
MS. BERNSTEIN: She is a member of the committee, but the staff — I mean at the moment it’s kind of Joy, because the person we had left. We picked Jonathan, and he left the department, and now Joy is the CPO, and she and I have been coordinating together as much as we can.
DR. CARR: But I think she needs to be in the room, you know, for the development just to keep, as you were saying, that we’re not out of sync with what’s already been done or what’s already known so that —
MS. BERNSTEIN: Right. What I was trying to say is there’s a two-way thing. We also need to have a liaison going in the other direction. And it’s a little bit easier for them to have someone to come to our meetings, even though Joy is oversubscribed. I mean, she’s only been there since February and I think she still drinking out of a fire hose. It’s a lot to absorb. And she’s fantastic.
But, on our side it’s difficult to have myself or someone else from the department go to all of the meetings. I mean they’re meeting twice a week every week for several hours.
DR. CARR: But John sat in on all of those calls.
MS. BERNSTEIN: Right. But he’s a member, like on a staff level. He’s a member of the committee, and since he is going off the committee, if that continues to happen it would be great to have a liaison there. I don’t know if he’s going to continue that role. But at the staff level, we’ve been trying to do it at the staff level to have liaisons, and it’s much harder to get somebody going the other direction because I have other duties besides this.
And on the ONC side, they tend to have more dedicated staff members that are supporting those committees, as I understand it. And we meet less often. So for them it’s not as much of a burden for them to follow us as it is for us to follow what’s going on at ONC. And that’s been challenging for Joy and me. And we try to meet regularly. We try to meet once a month actually and just talk about all the things that are going on, including the two committees. But that’s been a challenge, so.
DR. WARREN: And I’d just like to add, we’ve never had a liaison with the HIT Standards Committee — from NCVHS to ONC’s HIT Standards Committee.
MS. BERNSTEIN: Doesn’t Walter sit on that one?
DR. SUAREZ: I’m on it, and Mark, and Karen.
DR. WARREN: Okay. But we need to recognize those as official roles so that we can be sure that information goes back and forth.
MS. GREENBERG: I think the principle we are talking about is, of course, essential. We have a little bit of definition regarding the word liaison that has been brought to our attention by the committee management staff, even suggesting that our official liaisons — or what we consider liaisons, like from ONC —
MS. BERNSTEIN: I can barely hear you, I’m sorry. Can you try to talk into the mic?
MS. GREENBERG: They’re suggesting that if they are in fact liaisons, they either need to be voting members or appointed by the Secretary or whatever. So, I’m just going to ask that whatever we come up with we don’t overuse this term liaison, because it is a term of art in the committee management world apparently that means something different to some people than it has ever meant to us.
MS. BERNSTEIN: I just assume those people are, you know, staff for their particular subject matter expertise.
MS. GREENBERG: It’s people in the Department, whatever part of the Department they are in, are supporting and working with a committee or a subcommittee. And it does — we can just park this as an issue — but it does raise the issue that has been a longstanding discussion as to the way we staff the national committee, which is different than some other committees are staffed. I think it’s undeniable the advantage of having the people who really understand and are involved in the Department in the work, like Lorraine and Karen on the standards one. Make sure that you don’t have recommendations, hopefully, that are dead on arrival. But it does mean that these people do have day jobs, as well as the national committee — as does Maya. As do I, actually.
DR. GREEN: Back to your original question, I have a problem formulation that I would like to offer. It goes something like this: the size and scope of change that’s going on in our healthcare system is large. And it’s not normal change. This is abnormal change. And that’s critical environmental, contextual fact as far as I’m concerned for the committee’s work.
Another part of the problem is that the pace is faster than it used to be for this committee. And another problem is that we’re being expected now to be both proactive and reactive simultaneously. And I think another problem is that we have more actors in this space that we’re operating in than we used to have, which complicates the work because more people have to be incorporated and brought into it. And collaboration has great value, but it takes time to do that. It doesn’t happen instantaneously.
And then I think — I don’t mean to whine about this, but I think the issues are just really complicated. They’re hard. There’s hard stuff here it seems to me.
I think that was five sort of environmental conditions. If you do an environmental assessment and believe those sorts of things, I think you would conclude that we’re underpowered for what we’re being asked to do. And what I noticed at this meeting watching John and Leslie and you two, is my opinion — and again I don’t mean to be pejorative here — all four of you look very tired throughout the meeting.
And I’m not convinced that we’re — I really appreciate, Justine, you asking the question as I’ve had my first meeting I talked about this. In the next few years, I think this is likely to be our situation. I don’t think this is going to pass; I think it’s going to just be the way it is.
So then raising those issues to get very granular and very specific, I just want to report three or four ways that I see other groups that find themselves in very much the same situation, whether it’s struggling to figure out how to get their work done, or continuing with it to varying degrees of success.
But one of them is to have pre-meeting teeing up webinars that last 45 minutes, that are PowerPoint driven, that are really quite like what I see Justine asking us to do with the PowerPoint slides. But it happens prior to anyone coming to the meeting. And then, if you can’t make the call, they’re posted and you can look at the webinar anytime you want to. In one committee sort of like this that I work on that has worked really well. In another one it hasn’t worked at all.
The use of SharePoint is likewise — when we’re networking practice-based research networks together on research projects, SharePoint has been an outrageous success in moving study design and also manuscript production along in an asynchronous way. It’s been very, very effective. Other places you can’t get anybody to go to the SharePoints; it just dies there. You post something, and then nothing happens, you know. But I think that could be a consideration.
DR. CARR: I think you’re right, if we had it — I think lining incentives, I think if there were an easy way to digest what is coming it would be good. You know, early on you noticed in the beginning we have an annotation of the agenda, what are we hearing and why are we hearing it. And I think that was sort of a first pass to try to get everybody up to speed with what’s going on. But I agree with you, I think if we have SharePoint, and we can preview these slides and documents in advance —
DR. GREEN: But we have to preview it; I mean, you have to do the work.
MS. BERNSTEIN: Did someone join the call?
MS. KANAAN: Yes, I’ve been trying for 45 minutes to get on the call, but anyway, I finally got on.
DR. WARREN: We started late, but we’re sorry. I was just sending you an email. Thank you.
DR. GREEN: Another place that I think provides us with examples that could help us is the IOM’s study committee process. And it has two features that I think are different from our situation. One of them is before it ever starts there’s a staff person that you know is going to be the final common pathway through which the report goes.
And a second one is that the committee authorizes a small group of authors to produce the report. The committee does not write the report the way we have been going about writing letters. And it has not compromised its credibility. And it assures in a timely way opportunity for everyone on the committee to make comments. It doesn’t happen when the group is meeting as a study committee.
What happens when the group is meeting as a study committee is the chairperson and the lead staff tee up, you know, here’s where we’ve got conflicts. We’ve got three conflicts. We’re going to spend this morning on the first one, and we’re going to come to closure on that, and it’s agreed to conceptually what the resolution of that conflict is. And then you go right back to whoever the designated authors were that report. The proceed and the chairperson of that committee — like in this instance it would be you, Justine — has the authority to sign off on that thing and it goes.
I feel like those sorts of adjustments in our methods could really help us. And, please, I don’t wish to — I want to make sure I’m not interpreted as just being a —
DR. CARR: No, I think it’s very helpful. And I think that’s what we tried to do with standards. I mean, when you think about it, Walter and Judy began pulling the information together obviously with Lorraine, and Karen, and Margaret A. Then we did have the preview with the PowerPoint to just sort of, you know, hear the things. And the we identified what the issues were, and that was what we put together.
So I think that intuitively is kind of the direction that we’re headed. And then I think the other thing that was very helpful, and we probably didn’t give it enough attention here, but the landscape. Larry, you mentioned it, the work that Margaret A. did in terms of really doing a lot of background work I think was extremely valuable and reassuring. I think sometimes, although we’ve got testimony, we don’t know that we’ve had all voices heard or all factions or contingents represented. And I think having that kind of landscape is very good. We’re testing that now with quality.
And I think to your point of the rapid tempo, and as Chuck was saying today, you don’t want to come out with a 1980s suggestion in 2010. So I think that there are a number of good things that we’ve learned.
I know that our time frame is tight today, and I think we’ve in a way teed up the next topic, which is what is the focus of the committee? With all that is going on, the reactive, the proactive, the expanding scope from legislation, and the compelling issues from availability of data, privacy, meaningful use, and so on.
I think we need to think about a couple of things. Proactive/reactive is one. And then the level of granularity that we get involved, are we at 60,000 feet, 30,000, 5,000 feet? I think we need to understand that. I mean, sometimes I don’t think it serves us well when we’re too granular. I think that’s where we experience a lot of challenge because we run the risk of sounding uninformed, and we also are not configured with the in-depth expertise on any one topic. We have the richness of the is the diversity.
When we talked in June I had put together some background just going through the various legislative initiatives, all of the reports to Congress, and all of the requests that have come to us. Every year we do a report to Congress on HIPAA, and we did the MMA, and we did the Affordable Care.
We’ve done a lot of things; we continue to have that. And ahead of us, in terms of active legislative initiatives, we continue to have to do an annual HIPAA report, we’ve got the 5010 test and implementation, ICD-10 implementation, health plan ID adoption, operating rules going on now, more operating rules coming up, followed by more operating rules over that. So we have an enormous — and we see how simple it all is.
So there’s that, which really fills our space. And then the other arena that I think is recurring with us is health data stewardship, going back to privacy and confidentiality, recommendations in the ‘90s, HIPAA privacy rule in 2002, 2007 our secondary use report, 2009 the primer, and more recently a 2010 commentary.
So this is in data stewardship. But when we think about data stewardship, we recognize that it’s about privacy, but it’s also about the data, the data integrity, the use of the data, data standards, and then very much how we heard today even all of the contextual use.
So this was again the document that I put, but at the heart of it is we have been talking about, and then Element 3 and IOM Learning Health System. And I think our report for the 60th was about all of this data is emerging, and what are our opportunities. And this is what our quality hearing is about.
And so I guess I’m trying to scope out what are the domains where we see ourselves. And this is my straw man, that we have our legislative. And then beyond that, if it’s a part of health data stewardship, be it privacy, or data, or education, I see that as in our domain. And then I think we have to have two responsibilities with that. One responsibility is knowing the landscape and who are our point persons that we need to be hearing from as a committee and as a subcommittee. And whose blog or website or whatever we need to be following so that we’re aware as things come about and we begin to make those connections. And then what are the projects we prioritize going forward. So just putting that out there, let me get some response from folks.
DR. SCANLON: I agree with Larry that the environment has changed so dramatically. And in some respects there is so much out there, and it’s very hard to think about how we can deal with sort of this bigger change.
One thing in terms of the idea of reactive versus proactive has come up. And I think that one strategy I would consider is to try and be proactive while reacting. In other words, you get asked a question, you answer the question, but you embellish. To me the environment has changed in a way that the four subcommittees, there’s a strong intersection of what their interests have been and where people want the environment to go. And it’s brought about by the fact that we’re trying to think about how do we use electronic health data.
There are elements of how do you create it, what purposes it can be used for, under what circumstances, et cetera. That’s where the four subcommittees come together. And so when we do a standards letter, it’s not just a standards letter. Embedded in these letters is this concept of well, what’s the purpose that we’re doing this for. When we do a quality letter, we’re thinking about where are we going to get the data for these kinds of things. That’s a big factor. Privacy plays a role as well, and we should be thinking about what are the societal health goals and how should they influence these things.
So I’m thinking in some respects we’ve got to get some economies by combining some of our interests. I think that’s a big piece of this. I would also agree with a lot of what was said before. Our processes need to be more efficient. It’s our recommendations that our key. The language around them should be circulated to everybody. But we shouldn’t edit it as a group.
Our time together is our most valuable time. I mean, seriously, it’s much richer than anything else, and I think we need to consider about how to maximize it.
One comment about the conference calls, I think unfortunately they’re probably indispensable. However, an hour conference call, one of the experiences on standards was we would inevitably start the call with two topics, and at 55 minutes we were still on number 1. And so I think — and to deal with Leslie’s issue — maybe we need to make a commitment that here are some dates where we have a two-hour or three-hour conference call set aside. And if it doesn’t need to happen it gets cancelled. But just the way we commit to coming to these meetings, we may need to commit to some conference call contingency sort of plan, because our time together is the key.
And I also think we should revisit the staffing question. Larry’s model from IOM, the wonderful thing about that is that IOM person is probably paid full-time to work on that committee. We need to think about how can we get the Department, if we’re going to give us more responsibility, how does the Department change its commitment to us in terms of releasing people from other obligations. And I know the Department has got a little bill to implement and is under a lot of strain, but if we’re part of that implementation, we’ve got to figure out how to work it out together.
DR. CARR: Chuck, do you want to say a little bit about the Learning Health System and kind of the interface ONC and NCVHS, and then also the Learning Health System work in IOM?
DR. FRIEDMAN: Sure. I’ll start at a very high level and hopefully work my way down to something specific. At a very high level, I think a lot of the discussion that we’ve been having about committee process makes the most since if viewed in the context of where this discussion now going, and that is what is the committee trying to do. And the process will sort of follow from that.
I think a major way in which the world has changed is that there are these two new Federal Advisory Committees working in a somewhat overlapping or adjacent domain space to where NCVHS has traditionally worked. And I don’t think — liaisons are fine, but they’re kind of a process solution. I don’t think the fundamental issue of who’s going to do what has been taken on in any systematic way as an issue. And by virtue of not having been taken on, it certainly has not been solved because it’s not a problem that’s going to solve itself.
So there have been a few conversations. David Blumenthal convened the three chairs and relevant staff from ONC, and we’ve had a couple of good discussions. But I do think that there needs to be more of those. I think the solution to this problem, whatever it is, needs to be a dynamic one. I don’t think we want to draw static, immutable boundaries, because the environment is dynamic.
But I do think — an this is just my own opinion — it would be very helpful for there to exist a clearer enunciation, at least clearer than it is to me, for this new world what the general terrain of particularly the Health ID Policy Committee is, vis-à-vis the NCVHS, and vis-à-vis the Standards Committee. The relationship between the Standards Committee and the Policy Committee was very well laid out. But I think there’s a lot of work that can be done to explicate the terrains, particularly of the Policy Committee versus the NCVHS.
DR. FRANCIS: I guess I just had a question to ask as we go along, which is historically we’ve been the committee that’s thought about data in the public health kind of sense. So, I wondered whether any of that resonates with you at the 15,000 foot, or 50,000 foot, or that — the kinds of data that get collected to look at, everything that might help improve the health of people, where that’s partly about medical care, but it’s less about the individual provider-patient relation, and more about the kinds of data that we might think of as population health.
DR. FRIEDMAN: Well, you’re helping me descend, because that’s kind of where I’m going. But let me also observe that one of the five meaningful use policy priorities advanced by Dr. Tang over there and his colleagues is improving public and population health. So that enunciation placed the Health IT Policy Committee in that space as well. And I think some overlap and redundancy is a very good thing if it’s managed. And I guess the point I’m making is I’m not sure we’re managing it.
So let me descend even further with your help. I occurred to me as I was surveying the terrain as I understood it that as we, the nation, the world, embarks on this adventure to develop a rapid learning health system, and I think the dimensions of what that means will be much better laid out when the IOM report appears by the end of this year. Of course, they’ve been working in this space for a long time, and their roundtables have issued several reports. But one that really makes sense in the context of the new high tech world will be what’s worth coming from IOM now.
Given NCVHS’s tradition and experience relating to public and population health, it struck me rather immediately that this might be a area in which NCVHS, if they had the bandwidth to take on additional activity, or at least an extension of what they have and might enter into in some significant way.
Another piece of this that motivated my feeling is that the learning system is going to have to be built out of and on top of a lot of other things. And if it’s going to work, the budgets of many, many federal agencies — not just in HHS, but many in HHS — are going to have to be aligned so that resources that they were otherwise going to devote to doing this independently will be devoted to doing this in a more coordinated way than it’s being done now.
That would make the fact that NCVHS reports to the Secretary potentially a very important factor motivating NCVHS being a significant player in this space. So, maybe I should just stop, but I just wanted to start by sharing these high-level, middle-level, and finally low-level, almost something that could be made into a recommendation, or at least an expression of the way I would like things to go, and let others comment.
DR. STEINWACHS: I just wanted to pick up a little bit on Sector 3 and the Learning Healthcare System. I spent about three years or so on the IOM roundtable where that really became the central idea coming out of the roundtable. And when you look around, the best examples we had of Learning Healthcare Systems were all organized delivery systems. And so Paul’s system may be a Learning Healthcare System at some stage, and Intermountain, Kaiser.
And to me what seemed to be missing was how was that going to be carried to the whole system so that you thought about individuals in private practice? Are they part of a Learning Healthcare System? Well, not the examples I saw. So it seemed to be that’s a challenge area. How do you get this out so that every health professional — not just physicians — are part of that.
The other missing piece, which wouldn’t have bothered me on the roundtable but certainly is relevant here and also on the policy, is there really is not any thinking I saw about how that system has either a learning public health system complement, or that system is so fully integrated that when you talk about the public health and the medical care as Learning Healthcare Systems, you’ve got them both there. It seemed to me if we were talking about it here we would say, well, somehow we have to involve and encompass both elements of the healthcare delivery system. But we also have to bring in the health system.
And so to me that would be a great area to figure out how do we work together. But there’s a huge step-up in this challenge it seems to me from at least the conversations I heard up until recently.
DR. TANG: I think even without maybe a deliberate or at least a well specked out collaboration or alignment, there has been one between HIT Policy and NCVHS. And partly the reason is because it’s fairly clear what ONC and its FACA groups have to do. It’s either spelled out in high tech, or it’s spelled out in the time constraints of meaningful use. A lot of it is driven by meaningful use.
As an example, for meaningful use looking for stage 2 and 3 we had hearings on each of the categories. And the public health, I’d have to say we had a bunch of grateful patients, grateful constituents from public health. They really did, one, appreciate that we put it in, and two, have palpably felt its effect. In fact, they asked could they be part of meaningful use to get more of the effect.
But the downstream effect for them is that EHRs are going to have to be certified to connect to them. Nowhere in anybody’s dream did they think that would be possible, certainly within the five years. So I think the setup is quite clear.
So, there was another group, the strategic plan workgroup, that is helping advise ONC to update its strategic plan, to have what you just described front and center. So Learning Health System was the big system in the sky where all of the healthcare professionals, and the patient, and the researchers. It really is the Element 3 thing, but it all fit on and building up to foundations, which included all the levers that it had, and thankfully high tech gave it a lot of levers.
So I almost think things are going pretty decent, mainly because of, as I said, either the legislation or the time constraints. And I think it’s, who are we, NCVHS, to piggyback that and to forecast and leapfrog where the after 2015 is going to occur. So that’s a lot of what we did in quality when Justine was co-chair and running the show, is to try to say, okay, no we can’t get into the retooling business. But we saw this huge opportunity. Again, it was the meaningful measures. We were headed here, and once we heard, we decided here is the big lever to pull that would change the quality measurement landscape. And so we’re now on the quality measure road.
So all I see are opportunities. And all I see are things that probably increase the influence and effectiveness of NCVHS as a result of high tech and it’s almost the result of having these other FACA committees to work on things that are shorter term. And maybe I’ve painted too bright a picture, but I almost think or work has gotten — the potential for our work to have enormous influence has increased as a result of high tech and other FACA committees. Do you agree?
DR. WARREN: So it was very helpful to me just to hear your two or three minute here’s what’s going on, because that’s the first time that I’ve heard it. We don’t hear this. And so when I’m talking about whatever the word that replaces liaison is, maybe what we could do in part of our preparation for our face-to-face meetings is get reports from things that are going on that interrelate, or just a very quick five-minute update in the morning, much like what we get from CMS. Here’s what’s going on in these other two committees and how it might relate to the work of NCVHS. I think that would be incredibly helpful.
DR. CARR: Yes. And I think back in the day our whole meetings were taken up with presentations from other committees, but it left no time for working. And then we kind of swung into, when we all talk together, our face-to-face time, I think coming out of secondary use we were like, when we talk together, it’s very helpful. And perhaps, I was thinking when Joy presented yesterday how extremely helpful that is and the presentations we actually had at the June meeting about the data initiative and so on are critically important. And hearing it from the individuals who are leading it is critically important. So I second the need for that balance.
DR. STEINWACHS: Just a side comment: as you were thinking about what could be shared before meetings, I assume all of these meetings have some sort of minutes. But in part I guess it comes down to whether there was a way in which one could pull out the high points of minutes from those meetings and then be distributed ahead of time for us so that you at least take part of it. You’d get the background, but you’d still want to meet with the people.
MS. GREENBERG: Usually the minutes are on the websites, and we should maybe call people’s attention to that and let you know what the URL is. Sometimes they’re not the easiest to find, just as ours are not always that easy to find. But the minutes are pretty high level, too. Ours tend to be more detailed, and not as detailed as they used to be, which I think is good. So, there’s no substitute for someone who is on the committee and even in a leadership position on the committee to say this is how I see us contributing, how we interact there.
DR. WARREN: And that’s what I really liked about Paul’s framing of it. Here’s the way we’re beginning to think about it, and how the thinking is evolving. I don’t really need to read the minutes or know the details, just that the thinking is going in this direction so that I can think about the work that I’m doing and how it may relate and make sure that we don’t do anything that messes that up.
DR. TANG: That comment has been made before. Another leg is NQF. So, there has been some advantage of me being on all of these things, because I can try to pull it, converge it.
DR. FRIEDMAN: So if I could make a comment, I think NCVHS does have among its members, members of the two committees. And I will tell you that there is so much going on in these committees not with all of the workgroups that it’s very, very hard to just track it on the web. And what you really need is someone to do something analogous to the news thing I did on ONC’s programs yesterday for each of these committees. It takes that emersion in what’s going on to be able to section out the most important things.
Just coming back to the Learning Health System in Element 3, I don’t want us to fall into some magical thinking here, because this isn’t going to happen by itself. And there is a whole lot of work that’s going to need to be done, with resources invested in planning, and advice needed on difficult problems. And the more I think about this, the more I see how enormous a task this is going to be, and how much challenge is going to adhere in taking these — what Don has referred to and I am calling — islands of excellence and connecting them in some way. And some of them are in the government. I mean, caBIG and the VA are other examples of places that are doing it, and sort of scaling that up to an infrastructure that works for the whole country.
That is a massive project, and we are gearing up to begin doing it. And we’re going to need a lot of advice. And I guess I wasn’t very specific in saying this, but I’ll be more specific now. The question is whether NCVHS should be in a central role providing some significant fraction of that advice that is going to be needed for this massive project as it rolls forward. That’s the ask.
DR. WARREN: I think you live, eat, and breathe Element 3.
DR. CARR: But I guess as you say that, it puts fear and trembling in my heart, but also enthusiasm. As I think about even the different meetings that we’ve had, you know, sometimes we’re trying to think ahead to the next thing. Sometimes we’re trying to react to what’s in front of us. Sometimes we’re looking around us saying there are ten different groups saying something and this is something that the Secretary should know about because it’s going on all around us. And as I look at — this is just six or seven years experience — I think we do very well when we are taking a number of things and saying this and this go together, and this and this go together, and thus here is an important thing to do.
I think we get these assignments, like the first set of meaningful use hearing, or like the assignments in this, and we are hustling and scrambling because we’re not staffed up for this kind of thing. So it is a real sprint, I guess, to get this done. And it doesn’t feel like we’re in our comfort zone necessarily because it goes so fast, and our time to talk about it is you’re just hoping that everybody covered some section of it and we’ve got it going.
And then, you know, if I think about privacy, it’s something where everybody is. And who’s voice — there are so many voices, what is our role because there are so many voices in the privacy space? Does it fall to us to say something? Are we going to say something that someone else didn’t know, or something that’s more important? And I think we need to have a sense of where we work best and how we can best contribute.
And I think there is a part with Element 3, but as we think about altitude and granularity, we have to think about what is it that we do. Jump in here anybody, because I’m not sure if I’m saying it correct.
DR. FRANCIS: I don’t know if this is a jump in, but one of the things when we weren’t thinking of the most recent letter, we spent a little while, about 45 minutes, on Tuesday talking about what are some of the ways that we might try to contribute to some of the fascinating new available secondary uses, which of course Element 3 is about in many way.
And we realize that there’s somebody else who’s working on the research interface question. But how do you try to make sure that trust is appropriately protected when you’re trying to do the sorts of things that Element 3 makes possible with data. It seemed to us to be — I mean, we weren’t talking Element 3, but we were talking the wonderful new ways, the new types and new uses of data that are going to be available. How to try to think about appropriate trust regimes for those secondary uses seemed to us to be a cool thing and where we were going to go next — or at least where we were thinking of going next. We only had three members of the subcommittee there, so.
DR. CARR: The other thing that strikes me, being at the IOM, is when you have that brain trust assembled in one large room, you come away thinking, wow, that was efficient. You know, really everybody who is a leader in a particular aspect is there in some way. And it’s very efficient. And then I think about us trying to hold a hearing and think of who should we have and did we get the right people. It just strikes me that it’s hard to compete with something like that to come out with the right answer. I’m just trying to be modest about not aspiring to do something beyond what we really can do.
MS. GREENBERG: Well, I did have a question configured off of what Leslie said, but let me go to more of the first thing I was going to say, which relates to what you were saying. That is that as I think about this HIPAA requirements or the latest ACA requirements relating to HIPAA, and the timeline, it was impossible without getting a consultant to do the environmental scan. I think we did really move quite rapidly when we got a call. Jim, Karen, Lorraine and I talked about it, and we said, well, this sounds like something that Margaret A. could be really helpful, and fortunately we were able to engage her. I think we also engaged Margaret A. for meaningful use, didn’t we? Yes.
And so we do have that capacity, not an endless capacity. And of course often we don’t know in advance; something comes along rather quickly. But to the extent that this group, this executive subcommittee can reject whether it be related to the IOM report and the Element 3, or other activities, whether they be legislative or other requirements. Having a consultant or somebody to spend some really dedicated time apart from the staff who are involved, would make it more efficient and more effective. We can try to have those resources.
Jim isn’t here, but I can say that he has been providing money on an annual basis, reimbursable funds to NCHS, which is what we use for all of this contractual stuff, because the other part of our budget just goes completely to travel, meetings, et cetera. For many years when I worked with this committee we had no resources like that. So that’s made a big difference and it’s very helpful.
If there’s a project that’s of very high importance to the Department, in addition to what he is able to justify with this annual payment, he could probably try to get additional funds, either from ASPE or talking with ONC. I know that CMS is very limited in having money. NCHS doesn’t really have it.
But, you know, there are — so that is one of the things you all should be thinking about and letting us know sooner rather than later, because we’re just starting now a new fiscal year, so we need to know that. And there is some possibility of getting maybe more resources to support the committee so that we have a mix of people staffing the committee who also have day jobs as well. And contracting with people to say you will do this by this date, and they’ll do it. So we need that input.
Then I had a question though. You mentioned secondary uses, which is sort of a bugaboo of mine. But is Element 3 about secondary uses, or is it more about expanding the idea of uses?
DR. FRIEDMAN: It’s about creating an infrastructure that makes secondary use routine, supported, easy to do, and not a one-off.
MS. GREENBERG: So is it all secondary use of medical records, or is it broader than that? I mean there are things that are collected in the healthcare process that are really more for public health than for health care. That isn’t a secondary use.
DR. FRIEDMAN: One of the ways we talked about this is it has to support quality studies, things we routinely call public health, and all kinds of research: basic, clinical, and translational research. And there’s no reason that I can see why you need different infrastructures for those things. The same basic infrastructure can support all of them.
DR. GREEN: I thought Chuck nailed it yesterday with the three words rapid learning system. I think we want to be careful to not confuse our means and ends here. Reuse of data, using data for different purposes, categorizing them in some way or another, those are just tactics and mechanisms. What Chuck has taught me Element 3 is about, is seizing the opportunity to turn our healthcare system —
MS. GREENBERG: And public health?
DR. GREEN: Well, let me grab this moment. There is no such thing as a healthcare system in public health. They just are inseparable. We are the victims of trying to separate the inseparable for 70 years. And Element 3 represents a propitious opportunity to heal that schism.
MS. GREENBERG: But all the money is going to healthcare.
DR. GREEN: Well, so we might need to work on that. But my answer to the question what is Element 3 about; I would have used the word learning. It’s really about learning. And we’re making these huge investments. And I feel like I’m always channeling Scanlon over there when I say his fingerprints are all over this, but how are we going to get anything back from all of these investments? And how are we going to know if we got anything back, and its nature, and what it was worth and that sort of stuff?
Let me wander off the ranch here for a second. I’ve been wondering about the National Center for Health Statistics and its future. So I’ll just climb out on a limb and saw it off here, but it seems to me that there was an earthquake out in the middle of the Pacific a few weeks ago, a few nights ago, and that there’s a tsunami, and that tsunami is going to go right over the National Center for Health Statistics, and it’s going to come pretty darn soon.
DR. WARREN: Do you have a specific event in mind?
DR. GREEN: Yes, the specific event in mind is high tech and ACO.
DR. WARREN: I thought you actually meant something happened a few weeks ago and I didn’t know about it.
DR. GREEN: Well, that did happen a few weeks ago, and it’s just stunningly huge. And so that Einsteinian quote, “Everything has changed except the way we think about it;” everything has changed about health statistics now in the country. But we haven’t adapted to that and changed the way we think about it. We haven’t figure out what’s the baby, what’s the bath water, what to retain, how do you hook the census up, how do you hook the surveys up, how do you do this to the personal health record, how do you do this to the electronic health record.
In my view, that’s the idea that’s driving Element 3. We have so much, we have so many assets, but they are not connected properly. They’re not linked up right. And this is not a normal opportunity. This is a grand opportunity. And I accept the point that we capitalized only what is known as the healthcare side, and we’ve failed to capitalize the public health side. But that strikes me as fertile ground, particularly for the population subcommittee.
And as he was just saying, and as Bill alluded to, I do not understand why we would continue you as NCVHS with a quality committee and a populations committee. Those two committees, I believe, are ready to merge.
DR. WARREN: Well, they really aren’t the same thing.
DR. SCANLON: No, but I guess let me just say — this kind of goes back to my earlier point. I don’t think it’s productive to say public health has been left out, because you don’t have an audience that’s ready to hear that. It’s much better, I think, to say we’re pouring this money into health, and we’re going to be a part of it. That’s what the June report was about.
We are on this brink of this incredible opportunity. It needs to improve healthcare and health. That was the theme throughout. It’s the issue of instead of sort of in some respects whining very vocally, be subtle, get the job done. Okay? And that’s why I think these two are really — we don’t want quality measures for the sake of quality measures. We want quality measures because they promote health.
And the future of NCHS is a future that builds upon all of this electronic health record data, but fills in all of the gaps as well. There’s an incredible amount that’s not going to be in that electronic health record, even when Element 3 is as rich as it’s ever going to be, there’s going to be the need for supplementation. We need to talk about this broad objective and a strategy to reach it and not be complaining in the process, because that doesn’t get us much traction.
MS. GREENBERG: I couldn’t agree with you more, and when I asked what you were talking about, I didn’t mean to be whining. But the fact is that, just as Chuck said about an hour ago, this won’t just happen. And to make that leap from the way not only we’ve done it since 1980, maybe the way we did it in 1910, like collecting vital records, to the brave new world, there are processes, there are entrenched interests, and there are anxieties. There are all sort of reasons why this won’t just happen without dedicated funding for the demonstration projects like the ones we talked about with sensitive information. To try to see what works, what doesn’t work, how does it work. And the committee could be a voice for that. But without putting real resources into this, we still have public health departments that aren’t connected to anybody. And I think Walter has been quite eloquent about this digital divide.
So, I agree we shouldn’t whine, but I think we should all not pretend that this is just going to happen and get on the bandwagon.
DR. FRIEDMAN: Great things are being said here. And I just want to say in reference to a couple of things that have been said, it won’t just happen, but I don’t think we’ve ever had the kind of opportunity we have now to make it happen. It needs resources, but it’s tipping. I think everybody sees the opportunity. And what in fact is happening — just observing what seems to be going on in the federal government — is that we’re in the process of doing this six times in six different ways by six different agencies.
And there are resources. And the challenge, as I said earlier, is to help folks understand that we’re going to end up with something much better if the allocation of these resources is done in a way that addresses a national agenda building towards a national system, rather than building six separate systems.
So, it’s not like these resources don’t exist. What we need is the inspirational thinking and the expression of the ideas necessary to help folks realize that by some reasonable level we’re pooling these resources that they’re going to spend anyway, we can get to this national system maybe with ten percent more thrown in to make the whole thing work together.
DR. CARR: So let me just reflect, because I’m trying to keep up. So, think about the rapid learning health system, one part is here’s all the stuff and all of the new issues it raises: the privacy issues, the data integrity, the standards issues, and all of that. That’s one thing. The second thing is doing what we do, I think, well is say where are the gaps, who are the players that need to come together to be able to address that? And so it’s just — I’m trying to refine as the conversation develops where NCVHS can properly fit.
DR. SCANLON: I don’t mean to totally deflate the conversation, but I was going to try and land the plane here. Come back to Larry’s proposal, which I think — I mean this goes back to where we started, which is we’re overwhelmed. This idea that we do merge population and quality, that we recognize that at least for the moment there’s both too much demand, as well as so much common interest. That alone can allow us an opportunity to think about restructuring these meetings that we have.
We would only have three groups. They could meet for longer periods of time. Again, we get the work done when we’re meeting. And I think that is really key. And once again this meeting we’re working against the clock, and it’s very, very difficult to do that. So I think that Larry’s proposal, we shouldn’t lose sight of that, because it’s an important part of what we can do.
MS. GREENBERG: We didn’t ever report back from the subcommittees. The standards subcommittee probably spent all of its time working on its letter. Privacy committee, I know — you did talk somewhat the day before. We haven’t heard at all from populations or quality. So, I think before — that’s fine, I mean, there’s a proposal on the table. We’ve just done this in my WHO work, we merged several committees because it’s just the same people, and as you said, now we can at least meet long as one committee.
At the same time I think we need to know what the chairs of those subcommittees are thinking about doing, and then how do they align, or should some of that be prioritized with whatever.
DR. CARR: You’re right; this does come back to it, because we should hear about it. But we’ve got to decide on a shared journey. There are an array of things we can do, and an array of directions, but I think we have to think about how do we really combine resources to move things forward.
DR. WARREN: So, I’d like to piggyback on what Bill’s talking about, because before I got all tied up in standards, I was attending populations. And I think both — at least I hope, and Bill told me it was positive of my attending. Even though I was kind of out of depth with population, there was that synergy that occurs that when those conversations occur, it’s that cross-population. I do believe that all of us are working on problems that have components that each subcommittee hits on. It may not be the key component, but it hits on the periphery.
So it would be helpful if we — I don’t want to be too much of a lumper, but it would be helpful if there were only three committees. That would allow each committee to have someone go to the other two, and then to bring those conversations back. And I think it would be easier to schedule if we took a look at who were members and wanted to be those committees, that we could schedule it to make sure that they were able to actually attend the subcommittees they’re on.
I get worried about them, too. We have some very talented people that are on two or three subcommittees already, and so they’re constantly jumping from one to another and can handle that very well, but you also wonder what gets lost in that.
DR. CARR: So let’s hear actually from populations just in a little snapshot of what you talked about and what you are thinking about.
DR. STEINWACHS: Larry and I have a comprehensive presentation, you see, and Justine says it ought to be brief. So, let me give you the intro to it; Larry will give you the guts of it.
We had a conference call to try and identify future agenda items for this year and next calendar year, or the next 12 months. And two of them came out of the 60th anniversary report or white paper. And the others came out of committee discussions. We then took a straw vote of both staff and committee members. And there was a lot of agreement. Three of these, which I’ll mention first and are somewhat interconnected — two of those three come from the report — were the ones that got the high endorsement. And then two others we actually wanted to share with some of the other subcommittees. But you probably don’t need it.
So we have the advantage of being able to mainly look forward. And so there are not, and have not been in the recent past, high demands on the population. I think trying to produce the report for the 60th celebration, and after that Bill left the committee. We couldn’t understand why, and then he proposed regular times for conference calls. I thought after having a conference call every Friday for about three months that —
So let me just take you through them quickly. In the concept paper we talked about focusing on facilitators and barriers to data linkage at state and local levels as a critical part of health information infrastructure and the linkage of EHR into administrative and survey data. That is clearly one of the things that the population health subcommittee would like to undertake.
Dale, who was there at the meeting, was saying that’s what they’re hearing mainly in ASPE, is people keep coming in and saying what is this going to do for us so the city, the local health department, the politicians know something about what’s going on in their population health.
The second ties right onto that, and that is really the linkage of data related both to community resources, as well as to all of the other influences on health: environment, housing, socio-economic status. And so we separated those two, because you might start with the first one and then maybe move to the second one, or maybe you look at them together.
DR. CARR: Linkages, the first one is linkage to the other databases about individuals?
DR. STEINWACHS: The first one really talks about linkage to EHR, administrative, fatality/mortality, other kinds of administrative data, and surveys.
DR. CARR: And the other is about?
DR. STEINWACHS: Linkage to data sources that help talk about the influences on health: environmental exposures, housing, education, socio-economic status — those things that we know are major drivers of health in the community.
The third, which is part of this bundle of the three that got the highest enthusiasm, was a suggestion that Mark Hornbrook came forward. And I thought this was really the echo of a ghost of Bill on the committee, but I don’t know. It said might we consider identifying ten health indicators for a community or state health dashboard to monitor health reform, and then thinking about how would you support the information.
Well, those first two in a sense are talking about the infrastructure that would support, but this might be a shorter-term. Are there things you could put into place fairly rapidly in communities across the country that would support tracking key indicators that deal with this.
Let me just mention the other two, and then Larry will talk a little bit more about how we’re thinking about approaching it. One was a sense that there was a growing need for public education on health data and electronic health records. And so the novel idea was proposed was a look to social media as an educational source. So I think this was a place on Facebook for all of us, or maybe the committee. But the thing is that we should use social media to bridge the educational gap between what’s going on in places like this and what the community understands about it.
And the other one was a suggestion that we might take on recommending population health measures for — what was in here was the year 2015. I think it must have been more the idea of looking at the 2020 U.S. health objectives. And so, again, there was interest, but that was not seen as central to where we wanted to go.
So, Larry, do you want to say a couple of things about how we saw structuring elements —
DR. CARR: Before you say that though, just let me comment. One, in terms of residence, I mean, quality is talking about measurement and getting measures focused on an outcome. So I think that same construct is there. And then, Chuck, I think this does tie in very much with the rapid learning system, the whole idea of linkages. So as we think about this rapid learning system, linkage is going to be key to making this happen.
And similarly, on creating the indicators and the dashboard in that linking, and trolling through the data that’s there, we can begin to do that. And, again, this is what we were talking about for the quality of health care. Take that same mindset, but apply it to population health.
And, again, it’s a space that I think is in need of — that we’re not bumping up against other people doing this. I worry a bit in quality, because meaningful use is moving forward; they have their measures. And then the Secretary has got to come up with measures, and NQF is endorsing measures. I mean there’s tons of healthcare quality measurement oversight ongoing, and I think we got a lot of great feedback on our letter from last year.
But I think this seems like a space, and also based on the hearing that Paul had, that there’s a need. So I just wonder if you want to react to that, Chuck.
DR. FRIEDMAN: Well, I’ll be candid about what I’m thinking. As I was listening to Don I was thinking about — maybe it was the same thing you were thinking — what the infrastructure would need to be to make those things happen. And, boom, we’re right back to Element 3 and that which beyond meaningful use we’re going to have to have in place to have a learning system.
So as NCVHS thinks about the future, should there be some nucleated effort focusing on the infrastructure needed to make all of these things happen, as opposed to the things that need to happen?
DR. CARR: I mean, as we think about redefining, you know, we’ve talked a lot about where we’re working on the same thing from different angles. Maybe we don’t call ourselves population, quality, privacy, standards, but it’s about infrastructure — okay, maybe we need standards.
If you think about the infrastructure and the linkages, there’s the population health and all of the resources like we saw in that data: the zip codes, the inhaler use, and the pollution in the town, but linking that of individuals and the implications that has for privacy. And then how you take that information and create a measure that brings you to a place you want to go.
So, I mean, that’s an interesting thing. Rather than having three meetings, we have a topic on infrastructure for public health, and Leslie speaks to privacy, and Blackford to clinical decision support, or whatever. But we do it that way so that we’re not in three different rooms missing the opportunity, and that we build in that way.
DR. SCANLON: I think that we have to have the notion of this infrastructure in the back of our minds even before we get to a formal consideration of it. I think when we do standards, one of the things that we should be asking ourselves is how do the standards that are being written contribute to the administrative data that can be linked to this other data? What are the implications of having made a recommendation and standards for privacy?
We’re hopefully not putting the chicken before the egg, but we really, because we have to move so fast on all of these things, we have to be thinking of this bigger goal that we have in mind, even if we haven’t totally fleshed the specifics of it. Because the standards, they’re moving forward on a much faster train than some of these other things, so there’s worry about not doing that. And we can’t ignore the privacy component in this, because then that train is going to get derailed if we do.
MS. GREENBERG: I think this should be a major issue for our November retreat. Maybe we really do need to think about mixing it up in a way that like, instead of having four subcommittees in which people serve on one, and there are like five, six people in a subcommittee, whatever. Now, hopefully we’re going to get back up to 18 members, or at least 16. Right now obviously we’re really low here in membership.
But a series of our own kind of Tiger Teams — you and Walter were essentially a Tiger Team. You engaged people who came to a subcommittee meeting. That was the only way it could work under the timeframe. And so smaller groups of like three people, well staffed, supported who then key things up for the whole larger group, certainly while we’re this small.
DR. WARREN: We’ve done that with our ad hoc teams when we did the NHIN framework.
MS. GREENBERG: But that was on top of having the subcommittees.
DR. CARR: What you mean is if we were one group and we deploy on an ad hoc basis. And I think that it is really true that when we were working on the Affordable Care, on the health plan ID, we began to think about what does that mean for the exchanges. But also, if we want to aggregate data and see how many people get this kind of plan, that kind of plan, who’s got the high deductibles, how does that affect socio-economic?
DR. SCANLON: Right. This meeting, then, becomes the constraint. If we have five Tiger Teams of three people each, and we come here with five letters, it isn’t going to work. No, I think we really need to be realistic about the capacity. And when we did those crosscutting efforts, they were in lieu of some other things. I mean, we were suspending some of the normal subcommittee operations in order to do those.
DR. CARR: But if we define ourselves around infrastructures, and we take on — this is a perfect example — the linkages and begin to think of all of the different places that we would link and what we would do with the information, and how we would protect privacy, and how it would contribute to rapid learning. I think that resonates very well with the expertise and the configuration, and maybe we let some things go. We don’t work on quality measures for meaningful use, and we let that go to —
DR. WARREN: Justine, it just occurred to me that what we may be is on a brink of totally restructuring not only how we organize ourselves, but how we do our work, and that the days of going through letters line-by-line are gone. If we follow up the notion of the Tiger Team, we can still keep some of our subcommittee structure the way it is to try to make sure we’re in the right spaces, but then divvy that work up to the Tiger Teams to do.
One, it would make phone calls a whole lot easier to schedule if you’re only scheduling three or four people to be on that call rather than trying to schedule ten. And then those people take the brunt share of let’s organize this, and we start taking a look at what kind of organization do we need to have then to move that work into the place where the full committee can act on it, and then maybe have all of these discussions like we did yesterday and today, have everybody approve of things in concept, and them move them to the executive subcommittee to get the final write through to do the final, yes, let’s send this off, have you sign it, and it’s gone.
We may be able to pick up some cycles in going to that kind of process instead of what we’ve traditionally done. Then we can spend our time, as Bill has said, in these full committees, hearing reports, getting brought up to speed on the projects, and then having opportunity for discussion in those environments, and maybe even the subcommittees may or may not need to break out at the meetings. They may meet through alternative venues to do some of their dialogue.
DR. CARR: I like that idea very much, I’ll just say that.
MS. TRUDEL: Just to tag onto what Judy said, I think there’s an opportunity there to rethink the way we staff the subcommittees, because I think you’ll see — I can’t speak for all of them, but if you look at the standards committee there’s an enormously long list of people who are supposedly staff, and only one or two people actually set up the hearings and write the letters.
So I think it might be an idea to come up with some expectations of, you know, if you sign on to a subcommittee or just a Tiger Team, what is the expectation of what you’re going to do, and the amount of time that you’re going to contribute.
MS. GREENBERG: That would be incredibly helpful, because our committee looks like it has an enormous staff, and I can tell you we have one that works consistently.
DR. WARREN: We do have the concept of a lead staff.
MS. GREENBERG: But some of the others don’t even respond; I mean, there’s no connection.
DR. CARR: I think in the reconfiguration — I was going to say this, and then I decided not to say it, but now I will — that the role of the liaisons or whatever the right term is, is to inform rather than to sit through the micromanagement of some topic that is very far afield of them.
So I can imagine that some of the people who come to standards are not going to be able to contribute the health plan ID. So they’re there sitting through the meeting. But if we reconfigure in a way to say, yes, we need these liaisons, but we need them to keep us apprised of the work that’s going on and the things that might integrate with the agenda that we’re developing.
DR. GREEN: So, back to what we want to do. Building off of Don’s framing for the populations committee, we are quite confident that we have found a sweet spot for the committee and the staff, everyone that’s there. There was very little dispersion of the rank ordering and the preliminary work.
Just Larry shorthand, we basically want to link and link to monitor and improve. But to flesh that out a little bit — and Bill told us not to use the word “hearing” — workshop. We want to do a workshop soon with a target towards having a site on the spring meeting for a letter or a letter with a supplemental background paper.
MS. GREENBERG: What do you refer to as spring, June or February?
DR. GREEN: It will be June.
DR. STEINWACHS: Yes, because it didn’t sound like there’d be time to get a workshop together before the end of the year was going to be very likely. We still have work to do to get to the point where we — we were just saying that it didn’t look like when we were discussing it with Debbie that it made sense to try and figure out exactly what we were doing and bring the group together for what otherwise would probably be November or early December, which is not prime time. And so that sounded more like we were probably shooting for February.
DR. CARR: Okay. So I’m going to push back on that, because that’s a long time away. It’s September now, and to have something out — as we use the term rapid learning system it seems a bit old school, or old way. And we’ve put this quality thing together, and we were making the list yesterday and they’ll be invited to be here in six weeks. And that’s slow compared to the way ONC works, the way AHIC used to work. So I do have this sense that if we are going to be relevant in a rapid environment, we probably need a tighter timeline than ten months hence. So that would be one observation.
The other thing that I’m wondering is, you know, we should go through these topics. We had a phone call trying to clarify who’s doing what. But in a lot of ways if we focus on this type of thing, linkages, and move back from the things that ONC is doing in a very rapid cycle, what would be the fallout of that? If we have representation on those committees, should we be doing things in parallel here, or should we be developing in this new integrated way, and have new emerging issues about privacy, or about measurement, quality, and so on — population health — that come about because we’re looking at it in a different way.
We shouldn’t be bumping up against each other. We shouldn’t even have to have a discussion if I do this are you doing that. If there is a space that’s unattended that falls within our purview, we should — we have a national agenda, and it’s all hands on deck. And if there’s something that we can do that no one else is doing, than that’s where we ought to be.
DR. GREEN: Okay. Nothing like a deadline to galvanize people’s hearts and minds, but back to what we want to do. We want to do a workshop. We want to move into proactive mode. We would not see this as being a reaction to a command performance, but it is an envisioning exercise that we think is consistent with the history and traditions of NCVHS, and we think it’s a sweet spot that can be seized right now.
The purpose of the workshop and the effort is approximately the following: to provide a vision of where health statistics to a great public benefit, and to document change during this next period of substantial health care reform. And a key underlying assumption is that that vision is going to have to drive down to local and community level data in order for it to actually achieve the dream.
When we talked about the customers for this workshop, conceptually it would be providers and users of data that could either be or do better if they just had proper linkages. And when we started running off a list of possibilities of who might be participants or contributors. It’s HHS, from ONC we’d be particularly interested in Beacon Communities and the Health Information Exchanges, NCHS, the CDC. Someone mentioned the CDC’s winnable battles, and also their Community Data Initiative. There’s AHRQ, of course. There is Health People 2020. There are state and local health departments. And there are EHR vendors that are stakeholders, and the Census Bureau, and NIH’s CTSA awardees with their community engagement investments, and the Environmental Public Health Tracking Network, and the Departments of Education and Criminal Justice.
That’s about as far as we got in the discussion this time around. But the whole point in that list is it’s not just the usual suspects that need to get involved in this envisioning exercise. And then the focus was — help me here, Don, because you said this better in the meeting than I wrote it down. One of the foci of the workshop would be sort of the current state of the public health infrastructure that we feel has been neglected and isn’t connected up properly. It’s a bit of an assessment, not unlike the assessment we had to have for the identifier letter.
The second one is — forgive me, this is just I’m victimizing you with the way I think — we’ve got to talk about numerators and denominators. And then the third thing is, we really do have to get to these metrics, and something approximating a dashboard. So, that’s what we want to do.
DR. STEINWACHS: So just one side comment, we talked about some of the states and communities that already have a public health informatics data infrastructure that links together. And it seemed to me part of it is trying to understand what’s out there now, what may be working.
The other part, certainly, is those communities that have started to actually draw the electronic health record data into public health applications more than just putting in the ED reporting and so on. I think New York City was doing some of that. Certainly I’ve talked to some people are thinking about within the health information exchanges, which now have a different name. I think there are some people in the HIEs that have been beginning to think about how do you develop a community denominator.
We talked about trying to get census together, thinking about the American Community Survey, and what are the resources and the ability, for instance, to identify what households are actually in the database, which households are missing. Can you use census data to try and figure out roughly what’s the balance of those represented and not represented.
DR. GREEN: There were also repeated comments in our meeting yesterday about the importance of geospatial analytic work and mapping that I neglected to mention. Linking back to what Chuck said earlier, this is not an academic exercise in Webster’s third definition of academic, which is irrelevant. And this is not an academic exercise. It really comes down to the purpose of getting serious about figuring out what it will take to get to that rapid learning system.
And what galvanized this committee was Element 3 and the presentation you made a meeting back or so. But that proved to be a very propitious contribution to their thinking that really helped us get our act together and figure out what to aggregate around.
So, again, the details of how we’re actually going to achieve the data linkages that will allow questions to be asked, answers to be obtained in a way that protects privacy and confidentiality where the interoperability standards are in place so that if the Department of Commerce needs to participate, they can. That’s what we want to start chewing on and offer some sort of formulation of a vision and possible early steps to do that.
It’s very popular to, first of all, identify the barriers and start making a list of things that need to be overcome. Maybe that’s what this will become, but we’re not sure about that.
MS. GREENBERG: I’d say let’s go. I’m sorry I couldn’t be with you all yesterday. It sounds like you did more than okay without me and maybe better than if I’d been there. And I think you did have someone there from NCHS, Virginia Cain came, and of course Debbie and Missy.
But in defense of these distinguished gentlemen, I think if they could really get a really substantive statement, report, vision, roadmap, whatever on this by June, that would be very good. I mean, this is — they’re talking pretty big here. I think June would be great; June 2011 I’m saying. That would be great.
I think there is a lot that has been done in this area, but not pulling — I assume you’re channeling Harry here talking about the sweet spot, and I agree with you. But I think there was the hearing Paul’s group had, which I was very enthused about, and I communicated with you about it. I don’t think they’re going to do that much more with it, and it’s pretty much in the context of meaningful use. And so, it’s much smaller really than this.
But it requires an infrastructure, or it is aligned with what kind of infrastructure would be needed. Meaningful use would need it. So, there’s that and there are so many things going on. There were a lot of things at the National Conference on Health Statistics related to this, including your own presentation. There’s the work that Dan and Gibb have done about the population health record, which is now in AMIA.
So I think as soon as we can — and I’m not putting forward a name yet — we should get someone to do an environmental scan in the way that we did for the — and I think that could get started as soon as we can identify the right person and get them working on it.
DR. CARR: I think that would be huge, yes.
MS. GREENBERG: That might then also help you use your workshop time more efficiently. So that if you could have a workshop in the beginning of 2011 rather than trying to put something together quickly for sometime in November or something, that would be my recommendation.
DR. GREEN: Can I ask, how do we coordinate with the ONC?
DR. FRIEDMAN: So I was going to say it would be enormously helpful if you could find a way — and I think you can rather easily — to frame this in the context of the Learning Health System, what piece of that larger concept does this address. And also framing it in the context of the push to meaningful use, the fact that meaningful use is going to bring about a great deal of data being in various electronic record systems, and how far does that get you, and where does that leave you short are important considerations.
I think if it’s very clear from the architecture of this how it relates to these other efforts, than the other efforts will see exactly how to relate to it and benefit from it. And thinking it through, that can be pretty easily done.
PARTICIPANT: And are you the person to think it through with?
DR. FRIEDMAN: The Element 3 piece, yes. The meaningful use piece, there are probably some others in ONC, although I’d be happy to participate.
DR. CARR: Okay. We’ve got Leslie, and then Mike.
DR. FRANCIS: First of all, I can’t wait to come. Secondly, just an observation that where I think privacy could contribute — and I’d again like to bounce this off of you. Whenever people talk about linking data, the folks who talk about de-identification pop into the picture. My own view is that de-identification is so yesterday, because we know it’s not really the way to go. The interesting questions are to look at what are, given that there are these enormous potentials for linkages, and to data that were not considered traditionally part of the health care system, and to the importance — you know, you talked about data that, for example, quite low-level, community level data, or even individual household data, which is critical.
So, where I think we could contribute — and I’m actually carving off all of the technical de-identification stuff that happened over at ONC at one point. But the question would be, what are the various models that are out there for trying to deal with both the subjective fears people have and the genuinely objective concerns that are there? In my own view, the other thing that’s so yesterday is the individual consent model; but that’s only my own view. So the questions are what are the alternatives to that at a minimum. And to try to scope out that whole territory, I think would be something I’d love to help do. I think there are enormous privacy considerations there, but I don’t think that the obvious, usual, historical suspects are the way to do it.
DR. GREEN: Great, thank you. We also should relay to the privacy committee that our group wanted to just call to your attention the possibility that you might also want to take a leadership role around public education related to what we’re talking about building here. It’s a very scary thing for a normal human being walking around to listen to what we’re talking about. And we think there’s an educational need here that may need to be brought in.
DR. CARR: Mike has been waiting patiently.
DR. FITZMAURICE: One of the things that’s come up recently is an initiative pushed by the White House, and by Aneesh Chopra, who’s the Chief Technology Officer, and then it flows down to the Chief Technology Officers of all the federal departments, is the Community Health Data Initiative. To do just what Don and Larry were talking about, which is pull the data together in a geographic way and then look at how things interact geographically. You have four things together and you see a fifth thing pop up, maybe — I see maybe because you need to go about proving it — as a result of those four things, like high crime, low income, low education, or emergency hospital use.
This is pulling together data from the Census Bureau, from CMS, from NCHS, and a lot of other places. Privacy does enter into it, because it’s not likely in at least the first year or two that there will be any individual data. There might be individual county data, individual regional data, but not likely to get to individual data. That’s a problem that would have to be overcome.
Amy Bernstein, I think, in NCHS is the head of this repository. So there’s something that’s very close to NCVHS and very close to Marjorie that’s working on this. I think it ties in with the expertise that we have immediate access to.
DR. CARR: Great. And we had a presentation in June. We had a presentation on this that was met with a lot of excitement.
MS. GREENBERG: That’s what I mean that you need something to pull this together — what is going on out there — this environmental scan.
MS. BERNSTEIN: She has made several presentations also to the HHS Data Council. As I recall, Marjorie, the chair of this committee used to have a role — I don’t know if it was formal or not — as a kind of liaison to the Data Council. And I recall Simon occasionally went.
MS. GREENBERG: We send our recommendations to the Secretary and the Data Council. We copy the Data Council on all of our recommendations. Now, there was even a time I think under Don Detmer where actually he attended the Data Council meetings.
MS. BERNSTEIN: During my time I remember Simon going a couple of times. Not that I want to get more on poor Justine’s calendar, which I’m sure is overflowed. But in this case there’s clearly a relationship between this and what the Data Council is doing with the community health project that Mike mentioned.
DR. FITZMAURICE: Are we doing anything with the suggestion about merging the quality and the population committee? Are we just letting it settle and thinking about it?
DR. CARR: I wanted to get Chuck’s comment, and then I wanted to go to a wrap-up on next steps.
DR. FRIEDMAN: I was just going to observe very quickly that as the IOM Learning Health System study is rolling out — I think I mentioned this yesterday — it looks like the three key organizing concepts of that report are going to be patient engagement, governance and technology. And Leslie was just talking to the patient engagement piece. So we should keep our eye on that space.
DR. CARR: Right. And I was on that workgroup last week, and we talked about social media. But even in movies and books, I just read a Patterson book about electronic health records. I think we want to get some good stories out there. Actually nothing bad happened because it was a good system.
But you know that’s how people are learning about what is an EHR and what is all of this technology. So we actually spent a fair amount of time on that.
DR. WARREN: On the other hand, I think it would behoove us to see what’s out there. I routinely use YouTube videos with my own students. There are some wonderful videos that are out there that show you the potential of what technology can do for you in health care. And I mean I was ready to sign up for the future, because I didn’t have to repeat anything. It went in once. If I was exercising I could log onto my little handheld and get all of that done. If I’m engaging with my provider and contracting for health behaviors, they got that report. I mean it was a really slick YouTube that excites a lot of people, especially the new generation coming in.
Those pieces, they’re only like four or five minutes long, and they have powerful reach. So we really do need to look at social media. And then I just gave Don an email to show you how much this impacts ROI of health systems. Mayo Clinic just opened up their Center for Health Social Media. And they have done this huge implementation where they are looking at the uses of LinkedIn, Twitter, Facebook, their web, YouTube — they have their own YouTube channel even. They have all these different ways of communicating information, and they’re no the only ones.
I think Cleveland Clinic’s also — they don’t have a center, but they’re using social media. So, for us not to consider some of that in some of our recommendations really shows —
DR. CARR: We’re coming up on 4:00 o’clock. We’re going to start planning for the next 30 minutes. Maya?
MS. BERNSTEIN: Just really quickly, I think that’s a great idea. I think our Chief Technology Officer, Todd Park, would appreciate actually people paying more attention that he’s trying to push, for purposes of the transparency, motivation in the administration. But he’s also just trying to get in terms of public education or other kinds of message out; they’re trying to push uses of new media. And so if we hook into that, I think we’ll get support as well.
DR. FRANCIS: I think that’s really important, but I want to send a very careful cautionary note. There are a lot of uses of new media that are deeply problematic for both people’s privacy, and also in ways that actually counter the very message we would be trying to send out.
I’ll just give you one illustration. The use of Facebook recently to broadcast the beating of children with Down’s Syndrome. Somebody did it. This was coming around on all of the disability listservs. So the cautionary note I want to send is that we’re going to have to be very careful to be attuned to what are the problematic ways that people are using it, because unless we are we won’t see what the fears are, and how to protect against them.
DR. CARR: Okay. This has really been terrific. I applaud everybody after two arduous days to be this creative is really great. Thank you, populations, for being so insightful.
I like very much this recommendation because I think it does many of the things that align with what NCVHS does well. I think we’re focusing on an area that is not in anybody’s sightline at the moment. Yet, it’s critically important to the rapid learning health system. It allows us to look at different agencies, pull groups together to get the collective wisdom. And I think it very much resonates with what we’re struggling with, that our bandwidth is becoming overwhelmed. And I think by having a focus like this we may choose to reconfigure ourselves. No just have populations join quality, but rather maybe we just no longer have subcommittees and maybe we organize around —
DR. WARREN: Well, let’s not throw out the baby with the bottle, but it’s an idea.
DR. CARR: But maybe, you know, it’s so 80s.
But actually I think we should all reflect on it because it would be a bold step, but it would be a defining step in many ways. And I think it helps us address the struggles we have of everybody dispersing to a different committee to talk about something that would have been enhanced if the other person at the other committee had been there. So I think it has tremendous appeal.
So in terms of where we are, next steps, clearly we still have our very rigorous demands from Affordable Care. Lest we forget about 5010 and ICD-10, do we have anything coming up on those, as if we had time?
DR. WARREN: No, but it’s probably time for us to check in. I’ve been monitoring some of the newsletters. There’s real concern out there that only about 30 percent of the stakeholders are ready for 5010, and that starts next year. And a lot of people haven’t even began to think about ICD-10. They really think it’s going to be an HIN solution, and they don’t realize that providers and clinicians need to be involved as well. We’ll try to pull something together for our December meeting on where we are with those.
DR. CARR: Okay. That needs to stay on our radar screen. Quality has a hearing coming up mid-October, 17th, 18th, and 19th, something like that, and I think that will be very good. And then privacy, we didn’t give you a chance to talk about — well, you did —
DR. FRANCIS: We’re going to do what we were talking about in terms of thinking about as there are new forms of pulling on data and putting data together and so on, along the lines that Larry and Don and Chuck were talking about, what are the new privacy models, and how should we be thinking about them? And what I would suggest that we consider is having — certainly I would want to be involved. I suspect Sallie Milam would want to be involved in your — she’s got such a wealth of knowledge about what’s going on at the community and state level. And then we would then plan a follow-on for the privacy models based on what we’ve learned from your.
DR. CARR: But I really like the idea of having a model that we develop that is something that’s building on what we have. I think we struggle sometimes trying to comment on, even with this, privacy in someone in the EHRs where ONC is doing the tools and so on. We’re getting farther afield and we run the risk of being naïve or not having a piece of information. Where as we’re building this model, this infrastructure, the questions are generated by the work being done on that initiative.
DR. FRIEDMAN: I’m going to have to leave in a minute. I want to thank everyone for what I think was a great discussion and for putting up with my wacky ideas.
Let me just observe before I go, speaking to the points Leslie was making. Are you all aware of this PCAST Health IT report?
DR. CARR: We’re waiting for it.
MS. BERNSTEIN: Has it come out yet?
DR. FRIEDMAN: No, and nobody seems to know exactly when it will appear. The last I heard was this month, but I don’t know if that’s going to happen or not.
DR. CARR: Just foreshadow why you think that, how that will affect NCVHS.
DR. FRIEDMAN: There will be — I’ve seen drafts of it, and it’s close hold. But there’s also been a public meeting, a public announcement about it. It was several months ago. So I feel I can say that there will be recommendations in that report that speak to some of the issues that Leslie was just talking about. And I think the report will be directly informative to those issues you were just describing.
DR. FRANCIS: So, should I read that to say that it’s been done, or that this is a great jumping off point? That the questions that I was raising as the next steps for us, has somebody else already done it, or does it tee up the issue for us to then deal with?
DR. FRIEDMAN: I think there will be some recommendations in there that will suggest how at least one group of people thinks some pieces of it ought to be done. And then there will be other pieces that are not spoken to at all by the report. So the report is something that is going to affect the way you’re going to want to think about these things.
MS. BERNSTEIN: We’ll certainly want to look at it and review what they had to say, and see how we’re going to respond to it.
DR. FRIEDMAN: I just wanted to be sure it was on your radar screen.
DR. CARR: As we think about our retreat, how do we want to spend our time on November 30th. It’s the whole day on November 30th. How do we want to think about that?
MS. JACKSON: I put a note out to Todd Parks, by the way, to try to get him plugged in to any time in that three day period. And I thought if it was okay, we could just leave it up to him. I said, the question came up as to would he best fit in the populations breakout, and I thought considering what’s going on, this convergence of information, he needs to go the whole committee. So I let him know if he was able December 1 and 2, and if not, November 30. So at least he’ll have an audience.
There are also things coming in at the end of December, as well as the fall, from other populations based meetings and groups. That’s why we were wondering about pulling as much of that together into the strategy session, too.
You were mentioning the subcommittees needing to know what’s going on besides just seeing an agenda in the book. So we’ll get together in team and see how we can communicate that better and communicate that at the strategy session.
So what came up today as a take-home message for me was basic communication. That was one of the things. And I think that as there’s the convergence of the subcommittees, and their topics, and their themes, we need to figure out a way to get more information to everyone faster.
DR. CARR: We have a SharePoint, right?
MS. JACKSON: We do, it’s just putting it into utilization and taking advantage of it, and really using it. But we’ve got the setup for it, yes.
DR. WARREN: When you look at it, one, it was very difficult to log on the first time and get the right logon and everything else. And so after about two days of trying I got onto it. And then I didn’t log onto it for a while, and when I did my logon had expired, and there was no place to go to get a new logon. So it was a very short time. So it’s a very secure site.
DR. CARR: Why don’t we give it another try, if we could sort of re-launch that.
MS. JONES: Unfortunately you have to change your logon information every 30 days. We’re using the NIH protocol.
DR. CARR: Okay, then that message needs to go out to us.
MS. JONES: Well, it was, but it was buried. And so when you do get the message that you’re about to expire they do mean it. And they mean for you to change it within the window of time, because if you don’t you’re kicked out.
DR. WARREN: So that was the problem I had. I got that message and I logged in, and it wouldn’t let me in.
DR. GREEN: I lack confidence that SharePoint is the solution to the increased communication that Debbie was asking us for.
DR. WARREN: I use it at work and it’s good.
DR. CARR: Wasn’t that your suggestion to have the presentation materials available ahead of time to preview before the meeting.
DR. GREEN: Yes, but not to go to the tactics, what SharePoint lends itself to best for our work is when we’re working a document. And you can post the document and multiple people can work off of that asynchronously. But for communicating with one another, unless you have local control over it, it’s not all that effective. A blog would be much better. We could have an NCVHS blog where you just see what’s going on in every committee.
MS. GREENBERG: We have some constraints, because I know Katherine, and I believe it was Blackford and maybe someone else, did look into various options.
MS. JONES: John Houston and Mark Hornbrook. And so we did try and design the SharePoint space based on the feedback we had gotten from several of the meetings. Unfortunately we didn’t get enough people who were interested in pilot testing. And so the site actually has been established, but because it’s on the NIH server and going through all of the NIH encryption and security requirements, you’re going to have this hassle of having to re-authenticate every 30 days or so.
DR. CARR: Okay. We ought to think about having materials available to everyone before the meeting, and whether they are posted or emailed, we’ll have to see. If possible, should we look for a presentation by PCAST for that meeting? And also we had talked about Don Wright from quality.
MS. JACKSON: Yes. I put a note into his office, as well. We have the assistant deputy director there in quality is in fact one of our previous CDC executives. So I put a communication out to him, one of the two.
DR. CARR: So I think the theme, and maybe we can do this thematically, is who are the people working in a particular space, and maybe we organize around a particular space and have a couple of people present so that we begin to get the continuity. I’m saying just in the meeting and going forward. I think what I heard is we need to get back to having some reports from the outside world and try to manage our time for working on our documents and letters.
And so as we choose people, I mean this PCAST thing will be new and sounds like it will be important to us, so that’s timely, and Don Wright and that group. But as we are thinking about it, there may be two people that are in related areas that we might want to have come on the same day.
The other thing, and I called everyone this summer and talked about it, but the landscape of who are the agencies and committees and groups that relate to our areas, and getting that fleshed out. And I had started to do it, and I think perhaps we can just try to build on that. Maybe that ought to be sort of a standing piece in our book as we hear about things, who else needs to be on our web of connectivity. I think we’ll probably have a call before — we’ll have more structure to our retreat.
MS. GREENBERG: I’m thinking we’ve got some really great things on the table, in some ways more than obviously we can do. But we seem to have converged around some themes or some potential projects that are cross-cutting, recognizing some of our also keeping the trains running activities. Tying that in with the organization thing, I mean, form should follow function, I think the goal for the retreat, and then bringing it back to the full committee to get buy-in, is to maybe determine just what should the priorities be over the next 12 months, and how should we organize to address them. And we’ve got options. We’ve got our current subcommittees. We’ve got little Tiger Teams, or whatever.
DR. CARR: What comes on the agenda and what comes off? How do we size our scope and redirect our efforts. I think that’s a key thing. Don?
DR. STEINWACHS: Just to think about if we start to talk about the factors that influence health, and you bring in education, housing, labor, jobs, environment. It might be worth at the retreat to have some discussion that if we want to tackle those, what kinds of new linkages do we need. It’s one thing to hold a workshop or two and bring some people in from different agencies, but that’s not the way in which if we want really in a longer-term way to pursue, how do you get the information you need where you need it and how do you build those linkages.
And so I’m not suggesting we take it all on at one time, but it might be worth some discussion about are there a couple of other departments with which we would like to try and build an ongoing relationship. And so an addition set of — we don’t call them liaisons, but I guess affiliates.
MS. GREENBERG: One thing that is quite 60s, that actually the new FACAs are doing — so they’re in some ways back in the 60s or back to the future — is what we used to do with those technical consultant panels. You know, the committee put out a lot of work, particularly at that time it was around minimum data sets, uniform data sets, et cetera. And maybe only one member, maybe the chair or one member of those groups was actually one of the 14 members of the committee. But they had these technical consultant panels, which now maybe ONC is calling Tiger Teams or whatever.
Now, you need resources to do — we had to stop doing that in the 70s because the General Counsel of the Department gave a ruling that said that was an illegal way to expand the size of the committee. So we stopped doing it for 30 years almost. I mean it said cease and desist.
Now there’s a Pharaoh who doesn’t remember Joseph. In any event, the new rules are as long as this stuff is brought back to the full committee, deliberations on any recommendations or whatever are made in an open, public process and are part of the full committee, that you can do that. And the AHIC did it, and the two FACAs are doing it. They have the resources to do it. Right now we don’t really. What extra resources we have we use for like an individual consultant. But we have the legal capacity to do it, and if we have a compelling reason to do it, maybe we can get the resources.
DR. SCANLON: But the BFC is doing it. In terms of the resources, they bring in let’s say it was five people, $500 dollars a person, so it’s $2,500. And then they travel them. So it’s not an inordinate amount of resources. And then out of each one of those, $2,500 plus travel, they’re getting one report.
MS. GREENBERG: And yes, maybe all of that might get you more than one consultant — you maybe still need a consultant to write it all up — because you’re getting some of the best and the brightest or whatever at the table. So, it doesn’t have to be big, full-time people spending all of their time. But I think we need to be thinking of ways to expand our resources to leverage the members we have, even assuming that we will have a full membership.
DR. CARR: Right. Another way to expand the committee is to submit names to the Federal Register request. Seriously, look around you at people you know and work with, because we need some extra —
MS. GREENBERG: And even if you have recommended people in the past, and I know some people have and we’ve gotten various resumes, and I think Jim will try to dig all those out. It wouldn’t hurt, since there is going to be a Federal Registry notice, to do it again. Do check with the person to make sure that they’re at least willing to and will send forward a vitae.
DR. CARR: Okay. So if we have someone that we want to put forward, we talk to them and ask —
MS. GREENBERG: Just at this point ask them can I put forward your name, will you send me a vitae or something, and then say a staff person will follow up with you to talk more about what the responsibilities are. But your own personal lobbying of why they really want to spend their time this way would be helpful.
We are always conflicted between making sure people understand it’s not just like going to three meetings a year and you’re done with it, or not really telling them what the time commitment is, because then no one would do it.
DR. STEINWACHS: Marjorie, I thought when you publish in the Federal Register don’t you have to tell those things in there?
MS. GREENBERG: We say the committee meets four times a year, you know.
MS. BERNSTEIN: Well, and do you have a sense, Marjorie, of where there are gaps in the committee’s expertise, or where there are gaps in representation? So, do we need more state people? We always need more minority folks. Do we need more people in public health, or more people in plans, or however?
MS. GREENBERG: We’ve been looking at it from the point of view of subcommittees to some degree, by maybe we’re — but even if we don’t have subcommittees, we still need that expertise.
MS. BERNSTEIN: Right. But we need people from a variety of different areas is my point.
DR. CARR: I think the thing is if you know of good people that would fit in some way, without doing the math on what’s what, I think coming out of the retreat we’re going to have an idea of how we’re going to be configured going forward and our agenda. And I think then the final decision making hopefully at that time can be —
MS. BERNSTEIN: Right. Well, I think the other thing that we try to think about in thinking about what people you might want to nominate are people who have more than one area, where they can cover.
MS. GREENBERG: Yes, that’s what we always try to do. Plus, people who work well on committees. I mean, some people would be a great consultant or something, but they don’t do committee work particularly.
Now, let me just say one thing, because it’s very possible that some of you chairs are thinking, hey, we don’t have subcommittees anymore, we don’t have subcommittee chairs anymore. No, please do not think that way, because I think the value of at least having leads in all of these areas is critical, and having an executive subcommittee of this type — particularly if we have the full 18 members, it is certainly easier to at least have these kind of discussion in a small group. So don’t in any way think that you will quickly be discharged of your chairmanship.
DR. FRANCIS: What if any of us whose term may be — do we have to do anything about being reappointed?
DR. CARR: Everything is an automatic extension.
MS. GREENBERG: Not everyone is expiring.
DR. FRANCIS: Larry and I both have terms that would end.
MS. GREENBERG: Anyone whose term is expiring this December, unless you ask us not to, we will automatically extend you for six months. Then we will also consider you for reappointment, which could happen before that six-month extension is over, but we’re trying to cover ourselves. The maximum we can extend anybody now without reappointing them is six months.
MS. BERNSTEIN: How many times can someone be reappointed?
MS. GREENBERG: The only person in my experience is Simon, who had three — well Jeff was different because the Congress could keep reappointing someone forever if they wanted to. There’s nothing that would prevent that. But the Department typically, in my experience, does not reappoint a person more than once, so, generally two four-year terms. And they might come back years later like Bill did.
DR. CARR: The folks who are expiring in December include Garland, Mark Overhage, Leslie, Don, and John Houston, and Larry Green.
MS. GREENBERG: John Houston and Don Steinwachs have had two full terms, so unless they really want us to —
MS. BERNSTEIN: John will not be returning.
MS. GREENBERG: John said this was his last meeting, but we’ll discuss that because it would be nice if we could bring him back in December to say goodbye and thank him, but we’ll see how that works out.
Unless under unusual circumstances, we would not be considering reappointing people who have already had two terms. People who have had one term and are in a leadership position certainly should let us know if they are interested and willing to be reappointed, and it’s certainly something we are already thinking about. And we have on occasion reappointed someone who wasn’t in a leadership position, but I think we — so, you know, this is really kind of important, this new configuration, because it could be that we might identify someone who’s not now a subcommittee chair, but is the ideal person to take on one of these things, and then they might be someone ripe for reappointment.
DR. CARR: Will you be contacting all of the people whose term ends in 2010 to ask if they’re willing to continue, because right now —
MS. GREENBERG: No, because they don’t automatically —
DR. CARR: Not reappoint, but continue until June.
MS. GREENBERG: Oh, for the six months, yes.
DR. CARR: If you don’t do that and they look at their name and they see that they expired on 12/1, they won’t — we’ll have a very small meeting.
MS. GREENBERG: Okay, yes, we will do that.
MS. BERNSTEIN: There is a minimum number of people among the 18, is there not a minimum number of people we need at a meeting to have a quorum.
DR. STEINWACHS: I think just a quorum among those who are members. We’re down in membership.
DR. CARR: We have 14 members today, and we will have nine.
MS. GREENBERG: And we certainly need eight; one half plus one.
PARTICIPANT: Does the 18 count for the quorum, or only the number of members.
MS. GREENBERG: No, the number of actual members.
DR. CARR: Okay. We won’t be taking any votes in December unless everybody re-ups through June.
MS. GREENBERG: No, if it was 18, then we would need ten people, nine plus one. I don’t see how you can have a quorum of people who aren’t even on the committee. Well, we’ll clarify that, but clearly we’ve got some work to do here.
So you want to have an executive subcommittee teleconference prior to the meeting?
DR. CARR: So, I want to thank from the bottom of my heart everybody for all that they’ve done and for the wonderful collegiality and demonstration of how we can work well together. And Maya has —
MS. BERNSTEIN: Yes, I just want to thank you actually, and congratulate you on your first meeting, and tell you how I really — it’s a rare skill for someone who really knows how to run a meeting, which I said to you earlier, but now I’ll say it on the record, and you’re really good at it. I’ve been a bureaucrat for a long time, and I know it’s a difficult position to keep corralling people. And I’m guilty of that; I need to be corralled, so I just appreciate that you’re really taking on that role very gently and effectively.
And I also want to make sure to thank the staff who helped us here today, because without them we’d have a lousy meeting. Or we wouldn’t have a meeting.
MS. GREENBERG: I’d like to thank all of the staff and our contractors, too. So let’s hear it for everyone.
Thank you. Have a great weekend.
(Whereupon, at 4:30 P.M., the meeting was adjourned.)