[This Transcript is Unedited]
Hilton Garden Inn Hotel
815 14th Street, NW
Washington, D.C.
(Introductions around the room.)
DR. DOENNING: I am Doug Boenning. I am a medical officer in the Office of Science and Data Policy at ASPE.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, staff to the Committee.
DR. GREEN: Larry Green, member of the Committee.
DR. SCANLON: Bill Scanlon, member of the Committee.
MR. QUINN: Matt Quinn, I recently joined AHRQ in the Healthcare IT group. I work for John White.
MS. FARQUHAR: Marybeth Farquhar, senior advisor to AHRQ.
MS. GREENBERG: I was going to say I am Marjorie Greenberg and I work for Debbie Jackson.
(Laughter.)
MS. JONES: Deborah Jones with the National Center for Health Statistics, CDC.
DR. STEINWACHS: Welcome everyone and particularly, the new members. We have an agenda for the next hour and a half roughly, or a little bit less than that. Let me just ask if you would take a moment to look at it and see if there is anything missing that ought to be there because we have one chance to fiddle things or speed try and speed things up if that is appropriate.
Let us turn to the medical home and I really want to express my thanks to Matt Quinn for agreeing to help provide the support and help us move ahead on this with AHRQ. Marybeth also has been a great help and she found Matt. (Laughter.) Mary Beth said, I would love to help you and I would even be greater help if I found someone else to help you too.
We have had two or three conference calls trying to begin to move this ahead. Part of this has involved Larry, in educating the rest of us more about the medical home. I thought maybe, Larry, you could say some things – there is an overview here that is part of this – about the overview and then we could have some discussion about the next steps.
Let me just say that we have set aside May 19th and May 20th to have hearings on the Medical Home, and this proceeds the NCVHS next meeting. I missed the last call. I think Matt and Mary Beth worked on trying to begin to generate names and identify who would be candidates for being there and maybe there are some things to say about that but we need to keep that ball rolling really quickly so that we can make invitations.
Larry, why don't you start off?
Agenda Item: Plans for Medical Home Hearings
DR. GREEN: My objective is to get to Matt very quickly. There are two points that I would make that I think would help us look through the material that Matt has organized for us here. The first one is the Medical Home is a concept. That concept can be shorthanded as being modernized primary care in the IT world. There are efforts that are designed or aspire in some way to do two things. One is definitional and the other one is functional. The definitional one is what is a Medical Home? There is a lot of activity around that – that has to do with certification or designating that this is a Medical Home.
Then there is the second set of issues which are measuring the performance of this thing that is called a Medical Home. Does it really integrate care? Does it do what it is suppose to? Both are those are data driven propositions that are active and are in play right now. This could be an important development in NCVHS' interest in the development of a National Health Information Network. It could be a port of integration for most people in the country.
That is why it is important and that is a very brief overview of sort of where it is and how it fits into our purview becomes it comes down to measurement in data necessary to do measurements. I lied – I said I wanted to make those two points. The third point is we might also do well to look at the National Center for Health Statistics data sets and the surveys that are operating like we just heard Jim told us that MEPS is funded in the current budget near $55 million. There very well may be measures - questions – something or the other, that needs to go into a MEPS in order to determine who has a medical home and who doesn't. Whether or not their medical home helps or not? Whether it saves money or spends money – cost more, cost less – leads to more functional outcomes/less functional outcomes. And that we might be able to take advantage of these large national datasets if we just got our act together and thought it through.
To get this from that level of discourse, Mary Beth has found Matt and now he is hard at work.
DR. STEINWACHS: And productive. He just doesn't talk about it he is productive. Matt, do you want to just take us through the overview and that will give us a chance for some general discussion
MR. QUINN: I think something that is really important about the medical home concept is that it has been kicked around by various societies and specialty organizations since the late sixties. It seems like each decade or so there is something added to it.
The most recent decade, especially with the advent of a lot of the technology that we are talking about today, it seems to have become more a reality than a bunch of charts and sheets.
There is broad consensus that this is a good idea, especially among AAP, AEFP, ACP, AOA, et cetera. Also a lot of business organizations and NCQA. I think the real question is how do we get from a lot of people shaking their heads – this is a good idea – how do we actually do it. All of these organizations came together I think last year or a couple of years ago, and agreed on a whole bunch of this joint principles which are bulleted here.
There is a lot of land to cover here but the key things though are this is a patient centered approach. It is founded on the importance of primary care and it looks at more than just piece work. It looks at coordination and management activities that are not currently compensated or properly compensated they would argue today. This is quality and safety are the hallmarks of this and that there needs to be a health IT infrastructure for it.
There are a lot of groups, like I said, that are working on this. There is one called Patient-Centered Primary Care Collaborative which is a bunch of employer groups – not the least of which is IBM, that is saying this is a really good idea and let us figure out how to do this.
Something that I think is really significant and can flavor our testimony of this, is that CMS is mandated to do a demonstration of a Medicare Medical Home project starting in – they say it starts September 2008 – the actual patients in it in January 2009. They are actually in the process of getting it off of the ground right now. They have awarded a contract to Mathematica.
MS. GREENBERG: Who is that?
MR. QUINN: CMS.
DR. GREEN: How big is that demonstration going to be?
MR. QUINN: To be determined. Something that was very good – we sent this around after the last meeting. DeLoitte did a study on the medical home demonstration. I want to say it was limited to eight states. There was some information about that in here. Medicare Medical Home Demonstration Tax Relief and Healthcare Act of 2006 talks about a period of three years – will include urban, rural, and underserved areas in no more than eight states and it provides some of the payment stuff.
That said, I am excited to be part of this because it sort of – a lot of people are already doing really good work on this and I think it is the role of AHRQ and our testimony here, to bring together and convene all of these excited and interested parties to come up with some of the additional questions that need to be answered but also set in place some of the specific data centric work that has to happen here.
We came up with four goals for our testimony for May 19th and 20th. One of them is just convening organizations from the public and private sectors to come up with a shared understanding, consensus on definitions, and understand what the data standards, measures, models and flows are today.
The next is really around understanding the adequacy of those, especially as it relates to measures and metrics. There is really three sets of measures as they relate to this. One of them is the existence of the medical home. NCQA for example, has a program called EPCPCMA, which standards for something primary care patient centered medical home that assesses the medical homeness of the primary care organization. Is that adequate? I don't know.
Then there are a whole set of measures around measuring the process measures of performance of the medical home and what categories those fall into. And then measuring the impact of the medical home on sort of the bigger outcome measures and whether that can be done. The goal is really to understand the adequacy of current measures in that area.
The next goal, number three, is really around the applicability, use and limitations of current data sets. Looking at MEPS, we discussed last meeting a childhood – I should remember the name of it – there was a specific – when I started talking to people at AHRQ about this they said, oh, this is already being used today for this. It is children with special need data sets. I thought it was pretty interesting especially since this was started for children with special needs.
Not having to reinvent the wheel. Not having to require a whole bunch of extra data collection efforts if possible, to accomplish this. And then since health IT is necessary for a patient centered medical home understanding – we just heard about a lot of certification effort – how do the data standards – longitudinal data requirements and measures – how are these being incorporated into the systems and certification efforts of today?
Dr. Loonsk was talking about a choice between medical home and another thing is a priority and I whispered to Marybeth, I vote for the former as a priority.
We are looking at probably a day and a half. You can see that I have sketched out a rough agenda of what we might cover here. It is certainly up for reorganization, better definition, et cetera. The goal of this is really to summarize the findings of the meeting, identify gaps, develop a set of written recommendations for consideration by the full committee to inform the Secretary on this.
The feedback that I have gotten is that if this is – if we stick to this scope and this focus, and we include people that are already doing a lot pieces of this that this would be favorably received and would be helpful. I hope everyone else has been getting the same feedback as they discuss this.
Do we want to talk about the agenda?
DR. STEINWACHS: Why don't we do this? Why don't we open it up and see if there are comments because so far there has been some subcommittee discussion but a lot of us have been going on without the full subcommittee being involved. This gives you sort of a framework and a set of objectives, and if there are suggestions for how we could strengthen it or any concerns, now would be a great time.
So how many people have a medical home? (Laughter.) Oh, I think there may be an unmet need here. I don't know.
I did the other day have a meeting with one of the vice presidents of NCQA and I did mention to her that we expected to have some hearings and so on. It got into the discussion of how do you know whether or not the patient and the physician both agree that they are providing a medical home? Most of the things that are done right now are collected from one perspective but not the other. It always seemed to me the nice thing about NCHS was that there were ways in which, like with MEPS and HIS and so on, that you could begin to get two perspectives. I got a medical home but it is not you. Larry says, of course I am your medical home.
We are going to have some more conference calls to try and flush in this agenda. We are going to make them so that everyone will know when the calls and I will look for you to participate. We really need to try and pin down the agenda in the next two to three weeks because if not, we are going to have a hard time getting people in May. Look forward to your participation. If you have suggestions or other things, either get them to Matt, Larry, me - I'd love to keep this moving ahead.
I think it ties very nicely as you think about part of what people are talking about as health reform in the US that might start in 2009. This really talks about what is our capacity within the health statistics system as well as commonality of definition, but what is our capacity to actually measure something.
Doug.
DR. BOENNING: I have a comment and a question. The definition of a medical home may change over the lifespan. What we need as a child might be very different than what you need as a geriatric patient. I would hope that that would be one of the perspectives of the workshop.
My question is the demonstration project that Medicare is planning. Are they going to have any pediatric medical homes or will they all be the typical Medicare patient?
MR. QUINN: Mathematica has been awarded the contract and Miles Maxfield is the person there who is working with Jim Cohn from CMS on that. I have contacted Miles, and with Jim's approval, who I also contacted but not heard back from, would be happy to participate and is open for this. Right now there are at the stage of coming up with a model for this – really. When I said, well, what if we were to discuss data standards, and measures, and other things, is that something that you have figured out or is that something that you would like to have multiple perspectives on? He said, by the end of the summer we have got to roll that out so, yes, absolutely.
I think that that would be a really important constituency to have involved since this is where the rubber meets the road. He could also speak – I've invited him with Jim, to speak to us about it if we have any questions. He said, well, before I move ahead my project officer better -- I have a little blurb for it in the Deloitte Report if you want to check it out.
DR. SCANLON: My sense would be that they would have a hard time using Medicare Trust Funds for kids. This is probably going to be sort of a target on the elderly.
DR. STEINWACHS: You would have to go to Medicaid.
DR. SCANLON: Right. Quicker timeframe – one thing if I remember right, it is like next month that Mathmatica will be reporting to the CMS with a lot of design issues because in order to have this thing out – participants in the summer time – they have got to know now what it is they are thinking about doing. Things are going to move fast if they are going to try and meet the deadline.
DR. GREEN: Do you have a sense that there will be – I think I know the answer to this but let me just confirm it. I think that what you just said is that there good chance that Mathematica will have the design specifications in mind for that roll out pretty well refined by May, when this hearing will occur?
MR. QUINN: I think so, yes. In fact, they may have it pretty well refined today. At least I am sure they are in sort of the process of discussion and then refining them.
DR. GREEN: That could be exempt?
MR. QUINN: Right. There may be a sensitivity on the part of CMS which is, to the extent that Mathematica is the CMS contractor reporting to CMS and in some respects contributing to CMS's deliberations and CMS hasn't resolved what they want to be public with in terms of solicitation there are not necessarily want to talk about things in May. That is the one hang up. It will depend very much on where CMS is at that point.
DR. STEINWACHS: Good advice.
MR. QUINN: The other thing is – the question is – a lot of the discussions that I have heard about the medical home suggests that it is a home that we haven't seen yet or at least that is what people want it to be. They want it to be more than what necessarily has been –
DR. STEINWACHS: Do they want it more than Dr. Marcus Welby?
MR. QUINN: You did not see a computer on Dr. Marcus Welby's desk - did you?
DR. STEINWACHS: No, come to think of it, I did not.
MR. QUINN: At least in some circles that is actually the critical component that if you don't have a computer it is going to be a question of how can you sort of do the coordination follow up consistently, et cetera, that you want in this type of a medical home.
So there is this question of looking towards data sets to assess things that is going to be very futuristic in terms of when we get actual results because we are not going to find many homes out there at this point in time. The measures that we want, if we started to field those questions immediately, are hardly none response. It would be non-response because nobody knows. I think we need to think of a strategy in terms of building up for the information that we would like to have but then think about sort of what is the appropriate way in terms of rolling it out.
DR. STEINWACHS: One of the things that NCQA has their physician practice connections with their assessment tool – essentially they are certifying now medical homes.
MR. QUINN: It is not so much – you get a score and there are certain characteristics of medical homeness that are necessary, you have to have a score of at least 5 out of 10 on it. While I think that it is encouraging to say okay, this organization or practice has some degree of medical homeness – it almost dilutes the whole idea that it either is a home or it isn't a home or it is sort of half way in between. Oh, we don't really have registry functions but we do have an EMR. Oh, okay you get five points. I think that that is an issue and especially as it relates to consumers – purchasers, saying, okay we want to do business with this sort of an organization or choose a higher score. But at some point it either is or it isn't.
PARTICIPANT: Basically NCQA is doing structural measures of medical homes and not necessarily their care --
DR. STEINWACHS: I thought those comments sort of said, well, there are some measures right now. And just the point you made Matt, you should put some threshold in there but that really doesn't talk to the measures that we may need in the future.
MR. QUINN: The other aspect that I recognize too, is there have to be patient centered measures existence as well as provider centered points. I don't know if that is being captured today by NCQA.
DR. STEINWACHS: Marybeth looked at me – so I always advocate for that patient –
MS. FARQUHAR: I was trying to think - I think NCQA does some things about that – patient centered – and have some particular –
DR. STEINWACHS: - but it hasn't been part of a certification.
MR. QUINN: That was the other – we have a group inside of AHRQ that would be a helpful resource.
DR. STEINWACHS: Why don't we move on. Carol and Justine, we were just going over the medical home and onto the next topic. Do you have an agenda.
(Carol McCall and Justine Carr join subcommittee)
DR. STEINWACHS: Bill, I know that Kevin ditched you but Doug came with you. As I think, the subcommittee knows that we had hearings roughly a year ago – in the middle of a snow storm –
MS. GREENBERG: I can report it is snowing.
DR. STEINWACHS: This is the annual event for surge preparedness – this is really bad weather preparedness group. There has been some work and beginning to think what a letter might be that would communicate useful findings from that hearing. There were also follow on interviews and so on.
Bill, do you want to summarize where we are?
Agenda Item: Discussion of Draft Letter Surge/Preparedness
DR. SCANLON: Sure and then we can say we assigned the letter to Kevin. It actually was 53 weeks ago but who is counting.
We had a hearing on surge capacity and subsequently sort of Doug and Kevin and I, have had a number of phone calls and Doug and Kevin have done some interviews sort of follow ups on this. Part of this effort was derailed in June by the Data Uses Work.
DR. STEINWACHS: Justine takes full credit.
DR. SCANLON: It is okay. It is part of the report. Now that we have recovered from the Data Uses work we now have confronted this issue of what can we do, what should we do, with the results of the hearings?
We actually, instead of having a letter, we have drafted two letters. One is sort of an excellent draft that was put together by Doug, that really captured the richness of the hearing. I can't remember the number but it was maybe like 12 or more witnesses at this hearing from really a lot of different perspectives. There was not very much overlap in terms of what any of them were saying. The observations that you get out of the hearing are many. There is no question about that. That is one version.
Kevin sort of tried a different version which sort of tried to focus on what you might think of the highest level recommendations that might sort of possibly come out of this.
We have also sort of had discussions about the issue this letter of to be or not to be. To be or not to be for sort of two reasons. One is that when all is said and done we had four hours of testimony and some conversation. The question we talked about this morning about evidence, is the issue –
DR. STEINWACHS: I didn't think we let the evidence get in our way – did we? Marjorie is looking very crossly at me.
DR. SCANLON: In sort of complicated by the fact that the hearing was rich in terms of multiple perspectives but not necessarily on the same thing and so therefore cooperation among witnesses was not necessarily a strength of the hearing – it was more strength as in terms of opening up a whole lot of doors and pointing us in a direction but necessarily leading you to endpoint of all of those directions.
There is that issue of sort of the original plan was the follow up to develop the evidence that would then reach conclusions with a lot confidence and then see whether there are things to make recommendations about.
The second factor in this deliberation is that the world has changed in the last 53 weeks. As Jim Scanlon said this afternoon, ASPE is out there – as one example – ASPE is out there redoing their ED survey of preparedness and it is not the same survey that existed a year ago. It is a survey with new components and so there is the issue of some issues that have come up in the hearing have been partially addressed.
The other thing is that within the Department there has I guess you might think of it as a somewhat of a reorganization or an elevation that we now have ASPR, Assistant Secretary for Preparedness and Response, who has about 500 people – as I understand this.
They are also engaged in this issue of what information do we need for preparedness? There is a question of sort of what they are doing would answer some of the issues that we might raise on the basis of the hearings.
Where I think we are now is – if Kevin were here we would have a fuller discussion – we are planning a fuller discussion between Doug, Kevin, and myself, in terms of what we think about how best to proceed forward. Besides sort the traditional letter to the Secretary with recommendations, I think one of the things that I would put on the table is potentially a non-traditional letter to perhaps ASPR, saying we had a hearing – kind of reminding them – we had this hearing. There were a number of interesting themes that were introduced and we think that being aware of them is something that would be helpful as you move forward.
You might think of those as suggestions as opposed to recommendations. I think we should reserve recommendations for things that we really think are important, we really think we have the evidence for because if there is too much noise from the background then people start to lose the message. They don't hear what the message is. Everything should not turn into a recommendation. They either should not be reported at all because there is a learning process which sometimes you have to engage in things that don't produce momentous events or there are things that need to be sort of spoken quietly so that people understand that when you are shouting – pay attention to us.
That is kind of where we are on this. We will be talking about it some more. We do have these two drafts that we can work from. One idea is to sort of meld the two in the sense of take the high level view in a letter and capture the richness of the hearing – sort of an appendix document that says that all these things were raised. We are not saying that everyone of them is totally sort of valid and of major concern at this point but there are things that are worth thinking about.
MS. FARQUHAR: Now that you mentioned that – I've been trying to avoid this like the plaque. ASPR has contacted my project to do some of that work. So there is a connection there with regard to it. Just know that that is happening.
MS. GREENBERG: Which is your project?
MS. FARQUHAR: Quality indicators – So if you have got recommendations, absolutely, let's move with them.
MR. SCANLON: The issue is that the recommendations are not so specific they would be more of an area they would be prone to – this being kind of one of them. I think we can talk about that.
MS. FARQUHAR: So basically they just started them. They just did their kick off meeting in the last week or so.
DR. STEINWACHS: So, Marjorie, just in terms of procedures – the desire to transmit information not recommendations to –
` MS. GREENBERG: First of all, I am very comfortable with that. I think the Committee has done it on occasion. I also agree with you that it is like in research, sometimes you have false/positives. You have to maybe hold a hearing to know that you don't have anything to say about a subject or that you would have to do so much more work that it is not appropriate or you don't have the resources or somebody else is doing it. That is not the end of the world.
On the other hand, I actually attended that hearing and I learned a lot. I didn't know much about the topic but I thought it was very interesting. There were a lot of really sharp people – it wasn't a random sample or a systematic sample or anything like that. It certainly was well informed people it seemed, from different perspectives who brought forward a number of interesting issues, et cetera.
I think if you have already done some work on synthesizing this I would encourage you not to just put it in the file cabinet, and possibly as you suggested, not a letter to the Secretary. And we have done that we have done letters to NCHS Director, AHRQ Director, which have tended to be probably more informational or less directive.
DR. SCANLON: I think among the options that you have listed as what can happen when you open a topic – it is not one where you say this is not worth pursuing. What actually came out of the hearing was the fact that there was just so many things that were worth pursuing – and the other significant thing is that somebody is pursuing it. That is probably the critical thing. The Department is already engaged and if there was a role for an Advisory Committee at this point in time, it might be to look at what the Department is currently doing and ask themselves --
PARTICIPANT: You can offer that?
DR. SCANLON Well, but that puts us into and I think this is sort of a bigger discussion we need to have in the Full Committee, which is where would this fit into our agenda? The Executive Committee meeting a couple of weeks ago – this whole issue of – there is potentially a very full agenda that the Full Committee can have and we need to think about where this might fit. I think given ASPR's numbers it might suggest like them do some of this for while rather than start to look over their shoulder immediately.
MS. GREENBERG: Do they have an advisory committee?
DR. STEINWACHS: Marybeth?
MS. FARQUHQAR: No.
DR. BOENNING: As Bill alluded to this started as an office, OPHE, Office of Public Health and Emergency Preparedness, and it grew by an order of magnitude probably in 18 months. When we held the workshop they were just hitting the ground running.
MS. GREENBERG: Did we have anyone there from that office?
DR. BOENNING: Yes we did and I believe is still there. He had just started as an academic on loan.
MS. GREENBERG: I think, as Larry said this morning, this committee is about data and data information, and hopefully have got influence in policy. I would say a pretty high priority for this country is preparedness one way or the other. So, although admittedly you don't want to volunteer for everything and anything, I think if you were to do such a letter to provide feedback on the investigation that you have done to say that if you would like to continue the dialogue with us or whatever. Sometimes offices like that could really benefit from somebody a hearing – I can't think of another advisory committee in the Department that would be particularly appropriate. AHIC is going into another format. We can offer that and they can take it or leave it.
DR. CARR: Again, just following up on this morning, as we think about these topics and some of which are so vast – many hoops involved – getting back to what Larry was saying this morning, is there a way to take that what you heard at the hearing and put it into here is the data, here is the kind of information that you will need to be able to understand or follow. Is there a way we can take a big topic like that and bring it down to what NCVHS charter says we should be doing in advising on data information?
DR. SCANLON: I think there is but again, there is still this issue of whether or not that is the focus of there's too. One of the things that has come up in terms of preparedness repeatedly, is the whole issue of having the information to both manage preparedness in advance – knowing what the distribution of resources is and then sort of trying to do something to address that. Secondly, to have real time information. This is very different than some of the things we think about because when they talk about real time they are talking about days, if not hours, as opposed to we are going to do a survey. NCVHS is proud now because Health Interview Survey comes out within 18 months of the first interview – which is an incredible feat. But if you talk to the people who were in HHS during Katrina, they were talking about updates on a daily basis, if not shorter.
I think this is something that if we talk to ASPR, they are probably doing some of it. Not that I am saying we shouldn't put it on our list but I think our list is also going to be long, too.
DR. STEINWACHS: Sounds good. We have next steps.
DR. SCANLON: We will have next steps and the three of us will have a conference call and we will schedule a conference call for the full subcommittee.
DR. CARR: It might be good to have Marybeth's input on what the piece that she is about to embark on.
DR. BOENNING: Marybeth, can you just say in two sentences what the request from ASPR was to AHRQ?
MS. FARQUHAR: I'm not the lead on this my colleague is – there are only two of us in my program and I am one of them. What I understand is they have given us – it is a two-year project for $3 million or something to that affect. It is basically to develop measures of emergency preparedness with input from ASPR and us developing it and testing it. We will go through our contractor, Battelle Institute and Stanford and UC-Davis – they are the ones actually in there developing the actual measures. After that I hope I have got it in their heads that they need to have some testing done but we will see.
MS. GREENBERG: Just want to say since Kevin's terms will end in June 1st – actually I think, Kevin had to give a seminar today to Homeland Security so at least he is working on behalf of this topic even if it is not in this room. I know this is a topic he is knowledgeable about and very interested in so it would be really good if we could have something for the May meeting, when he is still a member, assuming he will still be a member then. So I think some conference calls and e mail and all that between now then would work well.
MS. JACKSON: We have got at this point, the two items – the medical home hearing that you are indicating you want to open up for the populations as well as the surge. The work has been done in these pockets – two or three over here and two or three and there – but at this point it is time to set up the information to full Population Subcommittee. So as you are working in pockets you are going to accommodate that and work off line and then when we get into the Populations call itself, we probably would want to handle one or two or however you want to do we will determine but now it will be just for the full Populations Committee.
DR. STEINWACHS: I thought on the medical home that we ought to be opening that up as we talk about who ought to be on the schedule and this is joint with the Quality Workgroup so that everyone has the chance to participate in that – trying to populate. So we are probably at that point to try and keep that open and moving.
I thought on the surge, once you have sort of more proposal I guess, for discussion by the subcommittee in terms of whether that is a letter or maybe not doing a letter but that would be a great time then to have call that involved everyone to get reaction and next steps.
MS. JACKSON: It is going to be a busy spring. Thanks.
DR. STEINWACHS: Spring, it is new life. I don't do anything in the winter. Let us move on to the next item which is Board of Scientific Counselors update. Bill, looks like you have a staring role.
Virginia, I don't know if you also have things you want to say about that.
DR. CAIN: Why don't you go ahead. Jim was not able to be here?
DR. STEINWACHS: Jim was here earlier today but did he leave?
DR. SCANLON: Jim had to leave. One of the earlier versions of the agenda had BSC sort of for tomorrow. Jim is teaching a class at the University of Maryland right now so he had to leave at about 2:00 o'clock.
Agenda Item: Board of Scientific Counselors Update
DR. SCANLON: In terms of – he and I had a discussion so this is some of what he might have said if he was here. In terms of activities at the BSC, one sort of interesting development is that the BSC has written a letter to the Secretary about the NCHS budget. This was precipitated by a concern about the vital statistics system.
When we had a join meeting a year ago September, there was discussion of that and especially the difficulties it is having because of budget sort of as it moved to electronic reporting – that process of moving to electronics is being compromised by the budget and in the process we are actually losing seemingly parts of – potentially losing parts of the vital statistics already.
This kind of concern sort of BSC to write a letter to the Secretary saying how important it was that NCHS – it was NCHS generally, being sort of adequately funded. Jim's numbers this morning, when he talked about the NCHS increases in 2008 and proposed 2009 budget are not the result of the BSC letter. (Laughter.) They can't take credit for that.
MS. GREENBERG: No, but probably – I don't know exactly the numbers he said – it wasn't that big of an increase for 2008 I don't think. Those increases probably could be absorbed by the Vital Statistics program and of course, they were suppose to be for the entire Center.
DR. SCANLON: Jim, I think, was being sort of kind because at one point he said, the proposed budget for 2009 is $125 million, which was regarded as sort of the minimal funding a few years ago for NCHS and being an economist – I would say their inflation. So, that $125 is
DR. STEINWACHS: Should probably be $135 –
DR. SCANLON: Something like that. So we are still talking about sort of difficulties in terms of budget and resources.
Vital statistics is something that is a significant interest on the BSC – it has been - Garland, is not here today, but in this committee. The BSC, even though they are going through a process of reviewing each one of the NCHS programs and the vital statistics was the first, they are going to come back and look at some vital statistics again partly because of this issue of how is the system affected by the availability of resources and what are the results.
This seems like an area where there is some potential for some kind of common work. We had a discussion of this at the Executive Subcommittee meeting – the exact sort of method or mode was not resolved. There was one thing that was discussed which is how does a committee get work done. This sort of goes to Debbie's comment about pockets. The answer was when one person is interested in a topic on a committee, then that becomes a topic that moves forward. The assumption here was that Garland will be a driving force if we begin to take up this topic.
There is kind of a natural event, the IOM is going to meet on this in April 30th. Following that is kind of the logical time to say okay, here is where we want to sort of proceed.
There is also significant interest in talking with Jim, and also prior related conversations with the BSC, on this whole issue of the quality research boundaries and consistencies sort of in terms of rules for gathering information. I think this is actually critical for the Population Subcommittee in terms of if we had cared about populations statistics and population health that we do have sort of the right set of rules in place that on the one hand sort of protect privacy – sort of protect individual interest but on the other hand, do not serve as major barriers to the development of knowledge and information.
We did the letter before on the issue of release of information but that is after the information has been collected. There are also issues about the collection of the information. We had a discussion about this also at the Executive Subcommittee because there has been this recent event involving sort of a emergency department checklist –
DR. STEINWACHS: ICU checklist.
DR. SCANLON: ICU checklist. Okay.
DR. STEINWACHS: State of Michigan and Johns Hopkins.
DR. SCANLON: So the issue is what are the rules that one needs to follow? It essentially comes down to that kind of a question. Jim Scanlon indicated at the Executive Subcommittee that the Department is probably going to be issuing guidance on this at some point in the near future. So we said this is something that after that guidance is out, we should be thinking again about the quality research interface because this is a bigger issue than is probably going to be dealt with by this guidance. It is a big issue for how we gather information to either measure health or to improve sort of health by improving the system. There is similar kind of interest on the BSC side as well.
DR. CARR: As we are going through the topics, and following up again on our discussion this morning on how much of where our work comes from – the research quality identified in the secondary uses of data report. Another thing that crosses my mind is the data linkages report that came out of here that we have not – I haven't heard that as part of what we do but it seems like that is a big topic.
Then, I actually, I wonder if in fact choosing the topics according to the expertise on the committee is really the right alignment. Like surge capacity was an interest of Kevin's, who is going off the committee – is there someone else or is it the work of the subcommittee? I just raise that as a question as to whether we think of the ways – some of this is proactive and some is reactive – where the topics come from, building on our charter, building on work we have previously done.
DR. SCANLON: I don't think we are going to lose the data linkages issue because data issue is very much a part of this whole question of what do we do with respect to data and privacy. The data linkages workshop, even though it was conceived as demonstrating sort of what the potential of linking data sets can be in terms of new kinds of information that one would have, the letter turned out and actually a theme of the workshop, turned out to be some of the risks in terms of linking data sets and then sort of how to best manage those risk while trying to maintain the returns of the value of the linkages. In some respects, there was no controversy about boy, you can get a lot out of linked data sets. But the question was how to make that safe from a privacy and a security perspective.
I think as we talk about this whole issue of research quality – that maybe is not sort of the right way to characterize it the research qualities – the boundaries. We only have that boundary because there is this artificial thing called HIPAA, which set up one set of rules. Then we have these set of rules for privacy. Both activities can be exactly the same and the question is why isn't there a single set of rules for them. After you ask that question then you can ask the question of what would be the best of rules to govern both sides of this.
That is kind of where we are. The second part of your question comes back to humanness of the members of the committee, which is a topic that you are a, not expert in, or B, sort of not sort of not passionate about (Laughter.)
MS. MCCALL: I would add though, while expertise and passion I think are necessary to be on this committee. When you think about the fact of it being that a particular person that is going off, I would just ask the question – what is the policy issue that NCVHS is in a distinct position to help. I think we are a scare resource,
Trading bounds portfolio is all about picking and picking well. Let us assume that we are going to have people who are passionate and have expertise – I don't know enough yet about why that particular problem – what is a problem that is unaddressed that is a policy issue that we can help with.
DR. STEINWACHS: Just in terms of approach, each of these, the surge capacity had a customer in ASPE and had a post-Katrina context - so there was a policy context. I think we tried to marry two things together. One is individual interest – because we need to someone to help drive it and the other is the customer concept that there needs to be someone in the department or elsewhere – certainly the public more broadly, could be the customer and we will be talking about the 21st Century Update and so on, as a broader context but also as NCHS as a customer to it.
I agree with you that it is more than just the individual, but I think it is tougher if there is no mandate. This committee does not, like privacy and security or some of the others, essentially have agendas being driven from the Department or from HIPAA and the Congress back down.
MS. GREENBERG: This subcommittee.
DR. STEINWACHS: This subcommittee. So we have the luxury in a sense, moving it the other way and I think it is good to raise those questions about are we picking the best priorities and moving them ahead.
DR. SCANLON: I guess I also think that we in some ways have an opportunity within this subcommittee as being part of the full committee, because of those mandates to the other components of the committee. I think some of the big policy issues may be at a higher level in terms of HIPAA, in terms of research rule, and the research rules are certainly a big component of that as the whole privacy question.
Those in some respect, present an opportunity that cuts across all kinds of very specific topics that we might be focused on because those kinds of higher level things are going to influence the kind of information that is going to be available for our specific topics.
This goes to the discussion this morning, what is the best way that we as a committee can deal with these things? Is it that two subcommittees meet jointly or is it that we create the ad hoc groups? That is where we have potentially our biggest impact in terms of one thing having sort of multiple outcomes with all kinds of applications as opposed to saying that is a topic I'm really interested in and I would like to work on it.
We are not talking about building capital in terms of basic sort of fundamentals that are going to influence data in all kinds of different ways.
DR. STEINWACHS: Just to follow up on the data linkages, the general sense and sort of the agreement of the plan, was to about every two years, either in late 2008 or early 2009, hold a follow up session to try and assess progress on data linkages using the background on the two days before. There are areas where certainly some of the challenges that were raised before, there is progress being made on. I think others that were concerned may still be. It did not bubble out of that a specific issue. We did talk about some of the legal issues. I think the feeling was that this probably was not the group to get deeply embroiled but it does cut across privacy and security. A lot of it is legislative mandate, too, and inconsistencies and the demands that are put on those groups – which are worth point out, but are also a little tougher to crack.
It has been a good discussion.
DR. CARR: Continuing on with quality. Just thinking a lot about how do we leverage the expertise that we have and align the agenda. We should talk about qualities of workgroups. Is the work done or is it a broader topic and quality is a part of a lot things.
DR. STEINWACHS: We think it is part of everything.
DR. CARR: There were other issues that came out of these as a data report; stewardship was one of them – that was an interest that AHIC –
DR. STEINWACHS: And the data linkages comes back to some of the stewardship issues, right?
DR. CARR: And the other was de-identified data. Again, I think we need to know before we close the meeting today or tomorrow, to just know top down, from Simon – we have a lot of things kind of floating around – at least three coming out of the uses report – so that is what I am thinking in the background that if somebody suddenly says, oh, this has to get done. How do we organize ourselves? Who does it? If we have already embarked on other things, where is the space to do it?
DR. STEINWACHS: I think Jim Scanlon, who is not here, was talking mainly at the Executive Subcommittee meeting, about not taking on things that would possibly be irrelevant once a new administration and a change of people comes in. I think there is another piece of that evaluation strategy. A little bit of it. You don't want to wait and see but there was part of what Jim was saying to us in part, take on things that you are certain and things that you can finish up or are definitely going to have a persisting value to do so at this time.
DR. SCANLON: That might also suggest that things that are too specific are things to avoid whereas things that may be contribute in a more general way, that it is hard for any administration to say, wait a minute – that is not relevant, are the things we ought to focus on.
DR. CARR: I think it would be valuable to get all these topics out. What are they talking about over there? What does Standards and Security have? Where does ICD-10 fit in – 11, 12 and 13?
There is just a lot of things that if we move them to say that here is a theme and then bring into those groups kind of thinking about the ad hoc group, what subcommittee are you on can you be a part of this? I just feel that we would leverage the expertise better if we pulled groupings together.
DR. STEINWACHS: You did a beautiful job presenting both our history and sort of where we are at. This is going to get another job for you and Harry, right? I think part of it is trying to organize it in a framework because most of us have a hard time because you think about it as a collection instead of what you are trying to push, which I think is important.
DR. CARR: While going through that 2004 Quality Workgroup Report, which was huge when we saw it. I think everybody was – let's not look at this for a while because it was so huge.
DR. STEINWACHS: But it had a lot of good stuff in it.
DR. CARR: And actually we found a lot of stuff that has happened and I think it is a great opportunity to see how the landscape changed it.
Agenda Item: Plans for Update of Health Statistics in the 21st Century Report
DR. STEINWACHS: Let me just hit the last item because I don't want to cut into the – we have made a exploratory commitment, I guess, on the idea but not having gotten to specifics of what I have been referring to as the update of the 21st Century Report on a Vision of Health Statistics. Part of that being the idea of measuring and how much progress has been made over the past roughly, six years on the recommendations that were made in that. Miryam also, has offered to help staff this.
The other piece was to really look at some of the area that were really not covered in there. So the roll over electronic health records and our vision of the future and how electronic health records may both fit into the health statistics – since this is a long term vision it open up a way to think about – it is a lot different then saying, what can we do in the next five years and so on, in that area.
Marjorie, you talked with Dan Freedman –
MS. GREENBERG: Actually it was Debbie.
DR STEINWACHS: Dan was on the committee – well he was one of the prime actors that produced the report. MS. JACKSON: He is available to go on board. We will just figure out how to make the best use of his time.
DR. STEINWACHS: So, I just wanted to raise I guess two things. One is that – and maybe the place to start is with some telephone calls and inviting committee members to be part of that, to talk about what would be specific ideas, and include Dan in this, about the updating process of modernizing and what areas that might be and the other is measuring progress. I think Dan would have a lot of good ideas about the progress. This committee really needs to think about what does it mean if we say well, how do we think the vision might change as you thinking about changing technology and opportunities that are there.
MS. GREENBERG: I think it was Dan, when we had that hearing, Justine, the hearing that John Lumpkin was at. Wasn't Dan there talking about population data?
DR. CARR: Yes.
MS. GREENBERG: I think that those issues and how then you look at now the big interest in using electronic health records and then how using them – how it aligns with what some of the basic principles are of credible statistical data as well. That really did not get addressed I the 2001 report and I think it would be interesting.
DR. CARR: Actually we have that testimony – I think it is on the website. I think you were there, too.
DR. STEINWACHS: I think I was listening – oh, I was there in the afternoon. I missed the morning.
DR. CARR: That would be great to take a look at that because there was a lot of very forward thinking.
MS. GREENBERG: I think some of the testimony in that hearing would be relevant to this update. Of course, the point of view of a customer, Ed Sondik would like the committee to do this. We invited the Board of Scientific Counselors to partner with us on it. It is a natural, obviously. And also with the 60th anniversary coming up – we rolled out the NHII and the 21st Century Vision for Health Statistics at the 50th. So there are a lot of reasons to move forward with it.
I would agree that the next step is – of course we did not realize that Garland would not be here at this meeting – because again, I think, right now it is pretty much been between us and then Don, and me and Debbie and now one conversation with Dan. But I think we need to convene a call and maybe we can ask Garland if he would like to participate on the call. We could ask Jim – again, I love to do this when people are not here to assign them – but Jim Lepkowski, if he would like to - welcome your participation. I had mentioned to Rob Weinzimmer(?), who worked on that 21st Century. I will call people who worked on that and just talk about – okay, what might this entail? What could we do? Would we need to have hearings or are there other ways to gather the information on progress? Is there some kind of contractual agreement here that we need to pursue. I think we should move ahead with that.
We could tie in the vital statistics into this. Our focus on vitals since it is obviously, a major part of health statistics. Also, this whole issue of information for policy and the issue of information for health reform.
DR. STEINWACHS: We did not mention that Bill was now the czar of information. Remember how he got appointed?
(Laughter.)
MS. GREENBERG: If we are clever we can tie in the medical home stuff, too, probably.
(Laughter.)
DR. STEINWACHS: Larry, did you want to say something?
DR. GREEN: Some of what you just talked about pre-dates my participation with things so I don't want to be redundant. But at the same time I want to ask if two ideas are on the table for this Health Statistics for the 21st Century.
One is the notion of sentinel surveillance. Is that already on the table?
DR. STEINWACHS: I think surveillance is part of it but “sentinel” surveillance – sentinel events – you mean?
MS. GREENBERG: This was focused more on health statistics than on surveillance – but there is certainly an overlap between the two. Sentinel events, you mean?
DR. GREEN: Sentinel in terms of the source of the data that are used for surveillance. When you have these large aggregated – well if they are not going to be RHIOs, whatever they are, regional centers – I believe that health statistics options open up that have never existed before. They don't rely on sampling necessarily, but they could rely on new types of sampling.
MS. GREENBERG: If you really have good coverage of data –
DR GREEN: If you really have good coverage – so for example, the CDC used sentinel reports I the 70's and 80's, that non-randomly chosen primary care physicians in the country reporting cough and sore throat starting in August, correctly identified all influenza – and they did so two or three weeks in advance of the laboratory surveillance system, the hospital surveillance system, and they all caused mortality in pneumonia. Mortality statistics went up like S curves right across the board.
If everyone had a medical home. If everyone had – if we had some of these privacy and confidentiality issues solved, if we had the RHIO problem, if we had the National Information Network in place, you probably would not go about doing surveillance of infectious diseases the way we used to.
MS. GREENBERG: So you are agreeing with me that we could mold in the medical home to the whole –
DR. STEINWACHS: We ought to look at the report about surveillance. I don't remember specifically what it said.
MR. QUINN: A couple of pertinent points. CDC has a program called Biosense that has focused on the in-patients. Just last week they awarded three contracts with the focus of prototyping and using the AHIC use case for biosurveillance by health information exchange specifically to bring it to the out patient.
MS. GREENBERG: Ws that the situational awareness –
MR. QUINN: Situational awareness. There were monster contracts – one was $20 million, one was $12 million and one was $8 million.
DR. GREEN: If I could, I just want to make one other point and that is if 20th Century statistics in my view, emphasized diagnosis then 21st Century in my view, will emphasize progress and the methods underline them and the data collection procedures are different.
MR. QUINN: I think how this relates to the medical home, and something we should cover in our testimony, is that measuring – supporting the payment methodology of the medical home is different than sort of the piece work procedural methodology of today in capturing what happens.
MS. GREENBERG: An all longitudinal approach. You can't do prognosis in a cross section I time.
DR. STEINWACHS: We need to move to the next Committee meeting.
MS. GREENBERG: Debbie is going to set up this call. Is there anyone else who is interested in participating on this call? Larry, would you be interested?
DR. GREEN: On the 21st Century, yes.
MS. GREENBERG: Okay. I think we can pull it together. At least it will make it a more integrated approach even if it doesn't make it easier.
DR. STEINWACHS: Thank you.
(Whereupon, the subcommittee adjourned at 4:40 p.m.)