[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
Workgroup on Quality/Subcommittee on Populations
November 17, 2005
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
P R O C E E D I N G S (8:30 a.m.)
MR. STEINWACHS: Well, you have an agenda.
This is the joint meeting of the Populations Subcommittee and the Quality Workgroup, and the idea I had had and – is reflected in the agenda – and we can certainly make some modifications to it – was the Populations Subcommittee has been moving ahead on two fronts and hopes to move into hearings during this next year.
One particularly relevant here was the idea of trying to look at issues around preparedness and response to disasters as well as bioterrorism, epidemics in a quality paradigm, and so that we were going to start with – and I’ll get Kevin to talk about this more – looking at issues like surge capacity. How do you measure surge capacity, and your ability of a health system to respond to disasters or epidemics. You know, what are the metrics and what are the sources of data that go into that?
And behind this is really – and I thought Kevin did a nice job at our meeting yesterday afternoon talking about, you know, how do you think differently about quality of care when you talk about response to disasters and –
Another piece of this, besides the surge, was brought forward by Justine along with Kevin and Susan Haynes in sort of thinking about issues around the utility of the electronic health record in providing information around disasters and in terms of also its utility and preparedness. Certainly, you know, there are also direct implications for helping people who go through a disaster, such as – I think exemplified, in part, by the BA experience and Katrina, and also the effort to get pharmacy data from three or four of the major TBMs, put those up and make those available.
So I thought we might talk about both of those and both sort of put our ideas together and whether this is something that we pursue jointly or not, you know, is really up to the group, but it seemed to me an area where there was some nice overlap potentially, and, if nothing else, it sort of informs each other.
Kevin, do you want to –
MR. VIGILANTE: Sure. Sure.
MR. STEINWACHS: You have a couple of pages in here which is Bill and Kevin developed.
MR. VIGILANTE: Actually, I don’t know if that is in here, but we can – oh, there it is. There it is. Okay.
MR. STEINWACHS: Yes, and so it is here, and then what Justine, Kevin and Susan did. So you have a little bit of written material to go with this.
MR. VIGILANTE: So I’ll sort of kick off and Bill can augment.
We really started from the premise that quality and preparedness are fundamentally related, and, certainly, in the – in healthcare – even in routine healthcare you do things better if you have planned to do them and you know how you are going to do them and you prepare to do them ahead of time, and that is sort of micro-environment planning is – and being prepared is part of good healthcare.
However, there is this paradox when you take preparedness out into the public-health arena in which, really, the folks who focus on preparedness from a professional point of view for population level are not generally the same folks who focus on quality at the clinical level, and in this paradox – and while there is some rationale for that, I would suggest that these two VIN diagrams overlap substantially in the middle.
And one of the areas, of course, in which this is relevant is the ability for our healthcare providers and provider institutions to be able to respond to events in the community that effect the population that we call disasters or – whether they are attacks or natural disasters.
And so – and there are a couple of levels to think about this. I mean, one is simply the ability to maintain operations and continue to provide the care you already provide at a level of quality that meets a certain standard. That is one sort of dimension of quality in the preparedness environment.
The other is to be able to search or expand your capacity to care to care for more people who are going to be effected by whatever event is going on in the community, and that ability to surge is, in itself, a measure of quality.
I mean, if you are unable to surge to the point where you can accommodate the needs of your local population or even a distant population, then, one would argue that you have not met certain quality objectives.
The other dimension of that is to say, when you do surge, at what level of quality ought you maintain? In other words – and just to make it the same example we gave yesterday was – you know – if you have folks who have been exposed to some respiratory event and they all need to be – many people need to be incubated in the ICU, and your ICU has sort of a fairly rigid internal rule that there should be two-to-one staffing – you know, nurse to patient – in an environment like this, do you actually change your quality measures or metrics, at a certain threshold of surge, to accommodate, maybe it becomes a four-to-one ratio.
So, at that level, I think – you know, I think what we are trying to establish is, frankly, that quality and preparedness have – are inter-digitated, have touch points, are intimately related at certain levels of the debate.
The question is what do we bring to the table as a committee, and where is our relevance to this debate? And as Bill and I were talking through it, the issue of surge seemed to be an area in particular that has relevance, because, in a sense, it is information and metrics driven. Sort of, you tried to quantify a) how much you ought to be able to increase your capacity to expand in types of measurable things, like beds, staff, supplies and those sorts of issues, and how do we go about a) measuring the baseline, and where does that data reside; how do we go about setting targets that are somewhat scenario specific; and then how do we verify that, in fact, we have met these objectives? And, at a certain level, it seems fairly simple.
However, once you scratch the surface, you realize that multiple different agencies have, at least on cursory examination, appear to have very different metrics in terms of what the objectives surge is or ought to be, how they would measure it and whether they actually have sufficient data to measure it.
And so it occurred to us that, at least at the health-statistics level, there is a relevance here if we wanted to find a circumscribed area of investigation that we think we can actually execute within the time and resources allotted to us, that might be an area to focus on.
Bill, do you want to sort of add to that?
MR. SCANLON: No, I mean, I think you did – you have done an incredible job, in terms of summarizing, I think, the issue.
I think one of the reasons that I think we have a role is that this – I mean, you talk about the divorce between the public-health people that think about this, but the reality is the delivery is going to come from the normal healthcare system, which is not typically public. It is private, and I think I think of us in some ways as one bridge between the private sector and public activities, because if this was just only a public-health activity, then, you know, someone in the department, somebody should be doing oversight and saying, Where are we? But, in terms of the public-health approach to this, we are interested in their planning sort of their concepts in terms of measures, et cetera.
But, then, there is this question of going out and seeing, how the system – healthcare system generally is going to be able to respond – and getting statistics on that, I think, we have a potential sort of goal there.
The other thing, for me, that I feel – and this was a legacy of being sort of focused on financing my whole life, is I feel like we have undermined this capacity by putting so much emphasis on efficiency and economy that, you know, Marjorie said yesterday that she had never heard of surge. Well, when I got into –
MR. STEINWACHS: We are worried about Marjorie.
PARTICIPANT: I just kept quiet.
MR. SCANLON: But when I got into – first got into health policy, you know, 50 percent of hospital beds weren’t occupied. So what was the problem? You know, and it wasn’t an issue that you needed to worry about. Yes, there might be surges, but, boy, you didn’t have to worry about the capacity to deal with them. I mean, and that has changed, and incredibly, and so I think that it has become something that needs to be on the radar and that we are in a – you know – potentially good position to put it much more on the radar. So –
MS. CARR: I mean, do we know, that – how it is being addressed? Because, I mean, what you are saying, we are – in Boston, we are all about this. We are counting head walls, what used to be beds, and, you know, community things, but is that – I don’t know whether that is a state initiative, a local initiative – You know, I don’t know where the initiative is coming.
MR. VIGILANTE: It is both. You know, because if you go to HRSA and say, CDC, they have benchmarks by which they award cooperative grants to public-health departments across the country, and one of the – at least, heretofore – and I don’t know – this is a moving target. These things change, but, heretofore, some of these benchmarks have included the ability to surge by X. The question is what is X? And there have been – I mentioned yesterday, one of the metrics that was – the most commonly-sited metric that I head, at least up until a number of months ago, is the idea that you should be able to surge, you know, 500 beds per million population.
Well, you know, if I am in a hospital, that doesn’t help me very much, because what am I supposed to do? What is my target, and that kind of guidance, however it is built up and wherever that data came from, I think, deserves some examination for its statistical meaningfulness or numerical meaningfulness to a given population, because, obviously, a million people spread over several hundred square miles is going to have different surge needs than a million people spread over, you know, 20 square city blocks.
MS. MC CALL: So what – I think the idea and the issue are particularly relevant. What I am asking myself now is what would be the particular contribution that we would be able to make, you know? Because if I take off the – oh, just kind of the barriers about what it is that we do, I mean, I would say, Well, then if we have the data, let’s actually put together some stuff and then go out and try to show people how much risk there is, given the capacity that we have, and do some modeling, and say, Look, you know, these are the real risk points, the dangers, but I am not sure that that really is ours to do, and yet that is just one step of many. So what would be – you know – a really meaningful contribution that we could make?
MR. VIGILANTE: That is a great question and something we have grappled with and why we are here for the collective wisdom of the committee to do some reality testing, but one thing that we had thought was, really, because of our – some of these silos or these agencies that are embarked on the preparedness endeavor, these silos are pretty hardened, despite the missive to collaborate, and my sense is that there are very different ideas in these different agencies about what this is, how to measure it and how to verify whether it is being achieved, and I think if we could bring to that conversation just some clarity about what the different voices are saying where the conflicts are, where the gaps are and where the agreements may be, I think that almost, in and of itself, is valuable because it’ll show a roadmap for the Secretary to say, you know, we need a common voice, because I don’t think – you know, from – my observation is there isn’t an uber oversight committee saying, Oh, DHS says this and HRSA is saying this and CDC – and you guys really need to – you know, this is really the way we need to do this.
Now, I could be wrong. We could bring folks in to testify and we could find out that – you know – they have actually figured this out, you know, three months ago and they were actually going down a path of making this an on issue.
PARTICIPANT: And we’d congratulate them.
MR. VIGILANTE: And we would say, Way to go, boys. Gals.
Or maybe, you know, we’ll discover that our suspicions are correct and that there is some fundamental thinking about measures and metrics that need to be applied to this fairly timely set of data or it is not even a data set. It is a metric set.
MS. MC CALL: Yes, and I think that that could be valuable.
I am flipping this thing open and I am trying to leverage this in as many points – as possible and try to find where it is still relevant and where it may have gaps, and this is a gap.
Specifically, in this figure that tries to paint a very broad model of population health and how to think about it and it has this – you know, the population’s health as we would normally classically define it, and then it talks about community attributes and then whole contexts of culture and politics and natural environment, and within health services, you know, it’s kind of got some stuff listed here, but it doesn’t necessarily specifically call out when it labels structure is, in fact, the need to look at the flexibility and adaptability of that structure in times of spikes. Okay? And then some other things here, you know, because certain of these things get wiped out – again, it is not just a local phenomenon – that that could actually get added to this and it could be relevant, which is to say, as this paradigm actually comes up, which I think is probably the broad goal, there is something fundamental that is missing from this, which can be measured, should be measured. There are some initial kind of broad probably gross measures, and call that out now.
PARTICIPANT: Well, Dan Friedman and Barbara Starfield(?), Ed Hunter, would love to see the reference to the diagram. We spent weeks, months just trying to conceptualize, and realizing it is two dimensional. What you are looking now is almost like a three dimensional. They saw it as living, breathing and hopefully something that could capture that conditions change, because, right, you know –
MS. MC CALL: Yes, and that is – I think this is a great framework to work from. I think it is just delightful.
MR. STEINWACHS: Dan was at our meeting yesterday afternoon. He sat in, and he was making the point that up until, I guess, 1985, there had been investments by, I guess, the CDC in the states to try and have more uniform capture of information on resources, on hospitals, on other kinds of health services, so that, at that time, it sounded like you could probably pull together at least consistent statistics across the country that would talk about what is the standing capacity. That is not the surge capacity, but at least – And his point was that since then, that has largely disappeared, because there is no longer that flow of resources. So I think part of the siloing issue is that – you know – it is how the data flows these days, and so there was discussion about the area resource file, which is – sort of a lot of people rely on that – PERSA(?) puts together – goes to AHA, ANA goes around and pulls data at the county level that they can put together – on different kinds of resources, but I don’t think there is necessarily a lot of confidence always either about how good that is, because it is only as good as each source. So –
MS. MC CALL: Sure. And it is never going to be – you know – uniformly perfect, but –
MR. STEINWACHS: No. There are some, I think, sort of data-capturing issues, if what you said, part of what the health statistics function ought to be is to have continuing ways to measure what our capacity is and to be able to say how much of that is surge capacity –
MS. MC CALL: I actually think that it is more than data, and what struck me – and this is kind of a broader theme. I suppose this is a joint meeting, so whether it is Populations or Quality doesn’t really matter.
PARTICIPANT: Go for it.
MS. MC CALL: As I reread all of this with a different eye, I was struck by a couple of things, and one of them is that we keep framing this as a data exercise, and that somehow if we just had the data, life would be good, and –
PARTICIPANT: Necessary, but not sufficient.
MS. MC CALL: Yes, exactly. Very necessary, but woefully insufficient, and you actually touched on it earlier, which is I think the thing that we lack is – are the coordinating mechanisms and the coordinating apparatus or apparati to actually do this, and this is whether it is with respect to bioterrorism or disasters, but also what I would call a broad research agenda, what are the priorities – okay – and where do you actually go to say, Okay. We have found something new. What are the metrics, and those types of things.
But this type of thing where if you have the data, how do you then – you know – make it a priority that this is work that is going to go underway in a lot of different pockets, and it is not just one shop doing all the work. It is actually a place where it is a coordinating mechanism of the main areas around the country that are, in fact, charged with this work, and, as I read through the recommendations here – and we’ll end up talking more about this this afternoon – this work actually called for – made specific recommendations on finding and creating – you know – and/or creating those coordinating mechanisms, and I just – I don’t know what the status of that is, but it seems to be one of the key missing links, and so if there hasn’t been any movement on that recommendation, I think we should dust it off and surface it again, because I think so much of the work, whether it is – what is AHIB(?) going to map into? What is our quality agenda? What about this type of work? But the missing and common denominator is some sort of coordinating apparatus for the work and where policy can meet that work for real. So –
MS. CARR: Yes, I think it is, and it is timely. It has perimeters. It has definition. You know, it will be a solid, you know, contribution in a timely fashion, I think, that would kind of help create boundaries. I think sometimes we struggle with – Some of the issues that we have taken on are infinite in their significance, but it is hard to get closure on. This would be a good one.
MS. MC CALL: This would be good. It is very crisp. It is very clear, and it could become a fulcrum for saying, Look, this is just one more example of a need to have, you know, a coordinating mechanism that is literally plugged into this landscape of key R&D efforts and analysis efforts, and what are those? And that is precisely what this book is talking about that I was talking about earlier.
MR. HUNGATE: Question. Does the joint commission use the term surge in any of their work –
MR. VIGILANTE: Gosh, you know, it is almost like breathing. So I don’t necessarily notice when people use the word or not, but there is certainly the capacity to respond to emergencies, but I don’t know that they have come up with a metric either that – You know, it is more do you have a plan? more than saying what that plan should be.
MS. MC CALL(?): Right. Right. It was very focused –
MR. VIGILANTE: So long as you have the right paper –
MS. MC CALL(?): Yes.
MR. VIGILANTE: – you can point to the paper, you are okay, which, you know, I am sure people in New Orleans had plenty of paper.
MS. MC CALL(?): Oh, yes, exactly.
MS. CARR: Well, what I can say, because we have had our – we had a situation where there was a flood and it knocked out electricity to a building. It was about six months before JCHO and that – living through that experience of figuring out how do you get people out of the building and what building do you put them in put us in great position for JCHO, but my impression was JCHO was not necessarily thinking once you get them out of the building where do you take them if all the buildings are leveled?
So I think that with Katrina, we have a new appreciation for what this means. It is not a hospital criteria. It is a community criteria.
MS. MC CALL: Yes.
MS. CARR: And I do think that that is something, certainly, for us, you know, we had not had that kind of planning until Katrina, but –
MS. MC CALL: Right.
Well, even linking this to like EHRs, and you go, Guys, you are making a huge assumption, and it is that there will be electricity and/or a computer and/or any of – I mean, so these are very specific situations. So it is not as though somebody – even if we have some data and we have coordinating mechanisms that somebody is going to be able to crank out an answer. This is really about different scenario tests and just somebody looking at it all the time, What do you do?
MR. VIGILANTE: But I think, at our level, I think if we can shine some light, it is almost like a data-linkages issue. You know, if we can shine light on opportunities for identifying best practices and thinking about how you measure this and how you quantify it and how you verify whether you have achieved your goals, I think that brings benefit. You know, just to make it very tactical for a moment, but an example, probably the healthcare organization in the United States with the biggest surge capacity right now, in terms of bricks and mortar, not necessarily staff, is the VA. They have – some places have less than 50 percent occupancy, and they are going through this very painful process –
PARTICIPANT: ‘Til we close them down.
MR. VIGILANTE: Yes, well, this is a capital asset realignment process that they are going through to figure out where they are going to be in 10 years and – you know – what should they close, what should they open.
It is not clear to me that this a) has been fully considered in this process, b) how one might leverage that capacity, and c) I can tell you that, at least in private conversations with folks is that they don’t see it as appropriate for them to be spending their dollars to – you know – really to be serving community needs when dollars are tight and, frankly, HHS has its own dollars for the community. So, right here, we have an asset – –
PARTICIPANT: Great question.
MR. VIGILANTE: What’s that?
PARTICIPANT: Great question.
MR. VIGILANTE: So we have an asset for surge that we haven’t measured, don’t know how we are going to use, and for which there is a budget barrier creating a silo.
MR. STEINWACHS: Jane Sisk has jointed us. Jane, do you want to tell the committee about your current role in life?
MS. SISK: I wait for buses that don’t come. I am sorry that I am late.
I am at the National Center for Health Statistics, heading up the Division of Healthcare Statistics, and we survey healthcare providers in different settings. So the Hospital Discharge Survey, the National Ambulatory Medical Care Survey of physicians in offices, hospital emergency departments and outpatient departments, nursing homes, home and hospice-care agencies, for starters.
And what we do is take a – it is a national probability sample of the providers – whatever category that is – and then take a sample of their medical records and actually go into the medical records and extract information on critical matters.
MR. STEINWACHS: I encouraged Jane to attend this morning, because when you think about measuring surge capacity in a system – we are talking about in disasters, epidemics where you would need surge capacity in a healthcare system – is – in concept there were appropriate metrics to apply. One way might be to have a capacity through the National Center of Health Statistics to apply those in the survey mechanism so you understood, and so we were talking about the issues of how you measure surge and put it into a quality framework. Data sources every more so. If you measured it and had all the data, what would you do with it was another sort of piece of this equation –
MS. MC CALL: Yes, and I guess I see the metrics as being really different from what we normally would think of in terms of quality. A lot of this, to me, it is almost like can somebody inventory for me and count up, basically, all the different things – and I’ll refer back to this diagram. I don’t know if I can turn to it fast enough, but in that framework, there’s all this community and kind of health resources – right? – and so how many do we have and how many are running half full, you know, three-quarters full? How many have no capacity? I am not even sure we have a picture of that, you know, and it may be less about anything that would be in a chart abstraction –
MR. STEINWACHS: Well, most of these surveys also include like the physician. There is an interview with the physician.
MR. STEINWACHS: And the hospital includes some data collection from a hospital. So it’s both at a patient level, as well as at a facility level.
MS. SISK: In fact, two quick thoughts. We just came out with a report on preparedness for natural disasters and bioterrorism events that came from –
M: Well, we’re done.
MS. SISK: Not surge capacity. Came from ASPE’s interest in finding out the extent to which hospitals had taken any steps to prepare themselves, and this was, I think, in 2003 and 2004 survey.
MS. MC CALL: What did you learn?
MS. SISK: You are familiar with structure process outcome. Well, structure, I think something like 97 percent of the institutions had plans, but, then, again, that is a JCHO requirement, so that is not surprising.
As far as actually implementing them and having any links with other institutions or local emergency facilities departments that you need, and, in fact, in the Katrina situation did need to be able to handle patients, there was a lot to desire, a lot of room there for better preparedness.
Also, I have only been at NCHS for a little over a year, but my understanding is that the division where I am really started to support the GMENAC activities –
MR. STEINWACHS: Have to be old enough –
MS. SISK: Graduate Medical Education –
MR. STEINWACHS: National Advisory Committee back in the – Around 1980 Congress was concerned whether there’d be a physician surplus.
MS. SISK: Well, shortage. It was shortage.
PARTICIPANT: It alternates.
MR. STEINWACHS: It alternates, because it was a shortage of some and a surplus of others. So this was for an epidemiologic model of disease-specific, specialty-specific forecasts. So for the first time trying to forecast these by specialty.
MS. SISK: So manpower or capacity are things that these surveys have – were originally designed to identify.
MS. CARR: You know, maybe this is a little tangential, but one of the things that has struck me in recent weeks, I have two very good friends who are surgeons in New Orleans who are working in manual labor now. One is repairing a roof and the other one is actually just filling out applications to be registered in other states. They have no income. They have no work to do. They have no patients. They have no authorization, and they have probably the best knowledge of what goes wrong of anybody in the country.
And it seems to me that that would be a thoughtful, valuable cohort of people who could very, very well inform what one needs to understand and do.
PARTICIPANT: That is important.
MS. CARR: It is. It is powerful.
MR. VIGILANTE: You know, the interesting thing about Katrina, and I think – mentioned this before is that it is – you know, it is – I wouldn’t say unique, but it – it will hopefully be unique. We don’t know yet.
PARTICIPANT: Or very rare.
MR. VIGILANTE: Rare. But it is the closest thing in our national experience to a nuclear event that we have had, and, probably, in terms of a learning experience, the closest sort of simulation in preparing for something like that, which not only effects people through – you know – illness, but wipes out your infrastructure. It basically wipes it out.
And, you know, the federal government developed something called the CIRA, the Catastrophic Incident Response Annex, which – an annex to its regular plan for catastrophic incidents that wipe out – say, the Island of Manhattan. It is – through a nuclear event.
As you play out those scenarios in various war games, it was kind of like this, because your whole capacity to do anything is – and what you are going to have to do is whoever is left, you’ve got to get them out.
MS. MC CALL: Right. Two points on that. Number one, you know, we are focusing on Katrina, and – which is one great example, but there are smaller that – local –
MR. VIGILANTE(?): And more likely.
MS. MC CALL: – that are equally devastating and need to be prepared for. So when you think about surge, and so I think there’s a continuum or a spectrum, if you will, of things that I think if we take this on, we’d have to include, and then one more point.
The second point is that the modeling that is required here is different. It is not just a matter – We do need data and we do need some metrics, but this is a type of analysis that people do. There is some work being done, for example, at Brookings Institute, and there is a model of – around bioterrorism, and it has to do with what are some – if you think of that as like a spread of a disease and so it is a disease progression, not a progression model, but an infection model and there are ways to model that, and against those scenarios they then try different strategies of blocking and thwarting and what is called throttling, and this is a model that is in place, and the government has permission to kind of take over at any point in time to basically say, This is now real. You know, we are taking over now.
And so that type of work would probably need to be done on top of the data that would be gotten, and there are people that do this today, and I was – it might be interesting to also – that is another type of intelligence that we could bring in, you know, to say, Look, there are people who do disaster scenarios. Some of them are in the military, but there is intelligence out there, and it could meet up with this intelligence for this on-the-ground experience. You know what I mean?
MS. CARR: Yes, I would like to echo your first point which is that although – you know – we think about these national disasters of bioterrorism and Katrina, the small disasters happen. Our computer system went down. We who live and breathe electronic health records, and we couldn’t call anybody, because our phone directory was on – We were paralyzed. We couldn’t get our disaster manual, because it was on a computer, and that is – disaster recovery. That’s –
(Several speakers at once).
MS. CARR: So, I mean, and I think in parallel with this promotion of electronic health records – because I would say also in New Orleans you probably couldn’t get anybody’s electronic health record anyway, because there were no generators, and that was another thing I learned. They have generators that are shared in a neighborhood. You get four hours of electricity and then give it to your neighbor around the community.
So – and, again, I mean, it seems like we’ve – you know, those like in the Bible, all those things. I mean, we had the computers go down. Then we had the electricity go down, and, again, you know, how do you –
MR. VIGILANTE: What book in the Bible was that?
(Several speakers at once).
MS. CARR: – crises that happened in the community with a tornado or a community with a hurricane, that is the lived experience and, God forbid, we’ll ever get to a national bioterrorism, but we are every day in every way –
MS. MC CALL: Well, and Wilma, also, it was much more devastating, I think, than – you know – it wasn’t of the Katrina-worthy headlines, so it didn’t bleed, so it didn’t bleed, and, yet, it was very meaningful, and still is today, in a local way, that they are having to reshuffle the deck every day in Florida. So –
MR. STEINWACHS: Let’s talk about sort of next steps.
One I was going to try and – Cynthia is going to work with Audrey and me to try and find a time for a conference call in December to talk about the agenda for having hearings, and one thought was to try and have hearings around this, maybe adjoin the February meeting or if that didn’t work either February, early March try and do that.
So far, we have had two volunteers, Bill and Kevin, to sort of try and do a first cut at what the hearings would be. The invitation is if others want to join that working group to try and flesh this out, because I think what has been identified are a lot of very interesting areas, and so I guess the question is you know, is this sort of a set of maybe two hearings, one that sort of tries to look at each of these areas that have input and then maybe to probe down in a second set of hearings more deeply on one or two. I don’t know.
You know, you were mentioning the surgeons, you know, people could participate in these hearings by telephone, too, and so they wouldn’t necessarily have to come, whether or not that – They might want to come.
PARTICIPANT: They can’t afford –
MR. STEINWACHS: Well, I think Marjorie will let us pay for one or two people to come, but, you know, I would love to see us try and get into this and – with the thought – and part of the sort of planning group, which will lead into the conference call was to try and think about – you know – what might be that letter report that comes out of this after six months, you know, was it likely that we think we could really comment on if we had one hearing or two hearings and try and have at least an intermediate product, and then I think, at that point, we need to decide do we want to keep going on this issue because there are lots of facets, as really these conversations are very rich.
MS. MC CALL: Right. And do we understand, I think, one other – there’s probably some work to be done just to even understand who does what with respect to this issue today.
MS. CARR: Wait. I mean, I would like to see the report –
MS. MC CALL: Well, yes, the report and –
MS. SISK: I’ll send it to –
MS. MC CALL: Yes. That’d be –
MS. MC CALL: And in addition to that report, how do we know the patient, that the patient here is all the work that takes place across the United States and just – I would hate for us to either replicate work or to not know enough to take – you can’t conduct endless hearings. So –
MR. VIGILANTE: I think we need to define a fairly narrow question actually, and so – and we need to articulate that in a way that it could be answered around the types of answers that we usually look for, which are around – you know – gathering what measures and metrics and/or the types of data that feed up to measure those measures – to flush out those measures and metrics and then – you know – is there common understanding of what those measures and metrics are, what the data that stand behind them ought to be, and is there the capacity and some agreement around that, you know, agency, and then – particularly on the federal side, I think, as well as the private sector – and, then, is there the capacity to actually execute and gather that data, and what are the barriers to it?
Doing more than that, I think, is a) going to be very difficult and b) strikes me as perhaps beyond our purview.
PARTICIPANT: Right. I would agree.
MR. STEINWACHS: Well, do you think we are ready to – I wanted you to say some things about what you have put together, Kevin and –
MS. CARR: (Off mike).
MR. STEINWACHS: Well –
MS. CARR: No, I mean, I think that –
MR. STEINWACHS: This is part also – you know – because I know that – work group is looking at the IT quality interface, and it seemed to me this was another piece of that, and that certainly sort of bubbled up in the conversation –
MR. HUNGATE: Meshes pretty well, I think.
MS. CARR: Well, you know, I think one of the things that we have recognized is the importance of having boundaries so that we have a scope, just as you are saying, This is the part we are going to do. Here is a big problem. Here is the part we are going to do. I am not sure where they are yet. I think Kevin and I did this together, right? I started this and you continued on it. So maybe you can jump in, but we – you know – we had said that Dr. Brailer(?) had suggested NCVHS might want to address the capacity of NHIN NEHRs in the measurement of population health and its role in improving population health. So we had identified three areas that could be addressed by the electronic health record, long term, including, one, a chronic disease registry; two, surveillance for early disease detection; and, three, enhancement of our information about race and ethnicity, thinking that, right now, we get it out of sort of registries, I guess, or collections, but, perhaps, the electronic health record might amplify more information about that –
PARTICIPANT: Are you really referring to disparities there or –
MS. CARR: Well, race and ethnicity information that would then inform disparities or whatever else.
MR. STEINWACHS: Well, VHR systematically captured race, ethnicity –
MS. CARR: Right. Right. And, you know, I think just one of our concerns in the earlier populations report was the fact that who is collecting the data and how rich is it? Whereas, the electronic health record would most likely represent a physician, clinician, patient, you know, maybe a richer source of information, if it were collected in a retrievable manner. I don’t know. It would be another – it would be closer to –
So two issues are key to the development of these dimensions. One is an understanding of the architecture of the electronic health record, including the structure and taxonomy. Because again, I mean, we keep coming back to this. If it is just a PDF of a note, it doesn’t really help or it is not manipulated –
And then the second, a shared vision that the electronic health record is an appropriate and reliable source for this information.
Kevin, do you want to say a bit about the disease registries?
MR. VIGILANTE: Sure.
Well, I think that, frankly, this ties directly into what Stan was talking about yesterday, and, frankly, pales by comparison, but it is the idea that you can take clinical information that is captured at the point of care for primary use, then aggregate that data in CDRs or what you called a warehouse for purposes of secondary use that might be relevant to the broader population, and whether that is finding – you know – patterns of disease that you want to quantify, finding relationships between different chronic diseases, finding – drawing associations between different interventions and their impact on those chronic diseases. Things that are, right now, incredibly laborious and expensive if done through paper, if done electronically, certainly, and captured at the point of care, so there is not this double duty going on that is clearly, I think, a very important role for the electronic health record to potentially –
MS. MC CALL: Contribute to.
MR. VIGILANTE: – fill, and –
MS. MC CALL: I’d say contribute to.
MR. VIGILANTE: Yes, contribute to.
So in having an impact on the health of the population. So that is the idea, and, of course, that is not a new idea. The question is what do we, as a committee do with that idea? Do we try to define – you know – the kinds of things that you might prioritize at a national basis that you might want to collect that you are not doing now? Strikes me that is a fairly big project and a bit top down.
So I think that is clearly a role of an EHR, but the question is what is our role in moving that agenda forward, defining the utility of that agenda, and I think, you know, Stan, might have – sounds like you’ve been thinking – Carol, you are positioned to say something, I didn’t want to –
MS. MC CALL: I am certainly happy to wait.
(Several speakers at once).
MS. MC CALL: Again, going back to this model here, this paradigm – You guys are all familiar – Okay.
MS. GREENBERG: We dream about that.
MS. MC CALL: Okay.
MR. STEINWACHS: Well, Marjorie dreams about it. The rest of us –
MS. MC CALL: And so I think that – you know – what would be a useful thing is – because the way I have thought about it anyway, so far, is that the EHR is really working in this circle here – all right? – and when we talk about population health it is really about aggregating within that, but what I don’t think we have yet are some of the links out here, and to truly get a population health the way it has been defined through this frame, we need these other things –
MR. VIGILANTE: I don’t really dream about it. So I don’t remember all those things –
(Several speakers at once).
MR. VIGILANTE: Hope I’ll be able to sleep tonight, after –
MS. MC CALL: What they do is they talk about there is the population health in this kind of clinical context that we talk about, but then if you zoom out –
MR. VIGILANTE: Sure.
MS. MC CALL: – you also have the environment –
MR. VIGILANTE: Sure.
MS. MC CALL: – and then you zoom out again and you have economic and natural –
MR. VIGILANTE: Sure.
MS. MC CALL: – and cultural and political influences on all of this, and they are really vital. So I think that one of the neat roles could be as data standards roll forward and taxonomies roll forward is to say, from a population health subcommittee, Dear EHR Vendors and Dear Community at Large, we need to be thinking about these other data sources, and we need to be thinking about how, when this thing comes up and gets stood up how the information in there – taxonomy and otherwise – is going to be able to link with these other sources – taxonomy, data and otherwise, everything from a sample to what is collected at a state level. So – because if we get them all stood up and we can’t hook them together, we are going to be really ticked.
So that is one thing that can be done, and it is not overlapping. It is not sitting around saying, you know, what could we do with that data? There’s a gazillion things we could do with it if we could just get it, you know, and everybody has a wish list, I’m sure, a mile long, but it is saying how can we – what can we do to help bring this forward and make this exist? And one of them as these EHRs come out of the ground is to make sure that there is a way to link to these other things, number one, and number two, make sure these other things are actually coming up. What are the sources for these other things? Whose job is it to make them exist once and then to keep them fed? And, then, back one more time, what is the organizing mechanism and apparatus to actually look at it and deal with it and draw conclusions and pass that back out all day long?
So that could be how – to me, that is how to answer this question: What is the role of the EHR in approving population health is to make sure that Tab A is designed to fit into Slot B, and these are Slot B.
MR. HUFF: I am not sure I have formulated it all in my – Well, I am not – I don’t think I am familiar with that particular diagram, but –
MR. VIGILANTE: You’ll probably sleep well, then.
MR. STEINWACHS: Carol, do you want to just hand them to Stan, so that –
(Several speakers at once).
MR. HUFF: I think I have seen it, actually, before.
MS. MC CALL: Yes, I am sure you have.
MR. STEINWACHS: Marjorie is going to quiz you on this later.
(Several speakers at once).
MS. SISK: I heard two things within recent months that I guess have led me to think of a bigger idea and I would appreciate some feedback on it.
One is I learned recently that the National Cancer Institute, if I understood correctly, has some projects going to take stock of electronic health records as they are, the electronic medical records as they are. It may be in relation to or with their Cancer Research Network.
MR. VIGILANTE: CBIG, the Cancer Bioinformatics Grid, that project?
MS. SISK: I don’t know what the term is, but the point is – and this – it also seems, from what I know about each, to be totally in synch with an effort that some people at Kaiser Portland in Oregon, Mark Hornbrook, is engaged in, apparently with some funding from reproductive health people at CDC in Atlanta, and my understanding is that, in both cases, they are reacting to the fact that most of the way that – maybe it is all – of the physicians notes in current electronic medical record systems, they are text fields, and so if you are looking for most of the things that we look for to pull out to assess the quality of care, you’ve got to come up with search terms. You’ve got to come up with key words.
Furthermore, if you are interested in looking at information from electronic medical records, as I am somewhat passionately, to assess and monitor the quality of care for specific conditions in this country over time, including disparities among subgroups in the population, we’ve got to do that with evidence-based measures of quality condition by condition, and that implies that we need some forethought beforehand – forethought beforehand – as those two efforts that I am aware of are doing to look condition by condition about the kinds of information – laboratory pathology, something buried in physicians notes – that we would really want to be able to extract from the future, hopefully more standardized generation of electronic medical records, and then figure out how do we get there.
MS. CARR: Yes, that’s cool. I think that what – you know – what I have been thinking a lot about is once we have that, then how do you get the information out? So one thought is, following on Stan’s presentation yesterday, I mean, they have it all. They have the building blocks down to each and every thing becomes an element that you can build on, but that is probably the 99.9 percentile of sophistication, and we are not going to have that.
And so part of this was saying, Well, let’s think of the building blocks that we certainly do want to have. Race, ethnicity would help population things, but, actually, I think your idea is kind of intriguing, because maybe what we are looking for as part and parcel of EHR is this kind of search module that can scan text fields and pull out and populate some of the other fields, and that may be the answer.
Again, thinking of David Brailer’s – you know – analogy yesterday, you might have – you know – a Sprint phone or you might have one with pictures, one with that, and we are never going to unify how people write their notes or what they say, but if we had this capacity to pull out this information and validate it, we could then – then the door is open for us to begin to use and leverage the fact that this is electronically – I think that is very intriguing.
MS. SISK: Well, I was going to say that condition by condition, there are some key words or phrases –
MS. CARR: Right.
MS. SISK: – that are most commonly used. I don’t know how many one would need to cover a reasonable percentage of what would be in an electronic medical record, say, about an AMI or heart failure or –
MS. CARR: Right. But –
MS. SISK: – whatever it is, but it seems that there would be great value in some up front investment in looking systematically and concertedly condition by condition.
I guess that the DRG Grouper(?) came to mind or maybe Grouper is – I don’t know if that is quite the right term, but the idea that there was an awful lot of work going on before New Jersey and then the Medicare Program adopted DRGs, an awful lot of investment, and at the same time that ONCHIT(?) and others are trying to encourage the adoption of electronic medical records by providers in different settings, it seems as if it would be valuable to have a parallel track going along to figure out what – the need to be able to get out of those records for research and the public health and figure out a way to have that be available to us.
MS. GREENBERG: Yes, I think this is – and, again, this is a combined meeting, Quality and Populations. I think this is – I’m sorry.
MS. MC CALL: No, that’s okay. I just had my hand raised.
MS. GREENBERG: No –
MR. STEINWACHS: Marjorie is going to remember this, Carol, but that’s okay.
(Several speakers at once).
MS. MC CALL: This one seems squarely in this intersection that we have been talking about between NHII and the EHR and what it means to come together with quality, because we have to have mechanisms to discover, right? Because we are not quite sure, and it goes into these free text things, and we don’t know how to pull them out and there are different ways to do that, and so I think that we can – There are different ways to bring something like that in, and I think there is a role that we can play. It could be everything from a new technology to bootstrap what a taxonomy could be.
Another idea, in listening to Stan, was let’s say that there is some more going on in cancer or some very disease-specific area and not every doctor wants to play, but a few of them are ready to say, Look, I am ready to pilot a new version of an EHR that doesn’t rely on free text, but actually starts with a taxonomy and would begin to capture that data, and I’ll sign up for that pilot, and then there is some very focused research, and, by God, a new taxonomy will be born, the thing goes into all EHRs and into a certification process. So that is another way to handle it, and there’s lots of ways to handle it.
But, to me, this lives squarely at the intersection of three groups, NHII, Standards and Security and Quality.
MS. GREENBERG: And Populations.
MS. MC CALL: No, but, see, I would say no to Populations, because I see Populations as wanting the answer, but not being responsible for doing the work.
MS. GREENBERG: Well, but, actually –
(Several speakers at once).
MS. GREENBERG: It is in the Populations environment, in a sense, that work on classifications and taxonomy has been done in some of these areas. So that is why I feel that I would say Populations as well.
I think this is really intriguing. I have to tell you the truth. I mean, I find – I think this is much more kind of at the heart of things than this whole surge business, but – but –
MR. STEINWACHS: Marjorie. Marjorie –
MS. GREENBERG: – I have made my point –
MR. STEINWACHS: – you aren’t having dreams in the right area –
MS. GREENBERG: Maybe I just don’t – I am not in a disaster mode –
(Several speakers at once).
MS. GREENBERG: No, I don’t doubt that what you are talking about is important, and – I mean, I know it is, but I am still trying to get my head around whether the National Committee really, you know, making this a priority, but fine.
PARTICIPANT: Surge ahead, Marjorie.
MS. GREENBERG: It’s okay.
I mean, what you are talking about right now is – and what I wanted to ask Stan yesterday – I asked Simon actually, but – By the way, this Simon isn’t our Simon, is it? It is some other Simon who has written about registries?
MR. VIGILANTE: Oh, yes, that is another –
(Several speakers at once).
MS. GREENBERG: Okay. What I wanted to ask you yesterday, Stan, is the extent to which you use – do you use SNOMED in your records as an underlying – sort of your reference vocabulary or terminology or structured text or –
MR. HUFF: It is all coded and, by design, the codes that we store – actually store physically in the database are our own codes, and they map one to one – codes and SNOMED codes and –
MS. GREENBERG: Okay.
MR. HUFF: So when we talk externally, we can talk SNOMED or we can talk – if we are going to exchange to a public, but there are important reasons for keeping what you store internally separate, because, number one, everything you need isn’t in those external –
MS. GREENBERG: Exactly.
MR. HUFF: And, secondly, you have to protect yourself from errors and changes in those terminologies, so that you can keep fidelity and accuracy in your own records.
MS. GREENBERG: Exactly.
MR. HUFF: But so the strategy is we store our own codes internally, but we know – you know – to 90-95 percent or better, we have a one-to-one correspondence between the things we are storing internally to SNOMED codes or to – codes or to standard drug codes.
MS. GREENBERG: Thank you. That was very helpful, and my sense is – you know, everyone is – I mean, selling SNOMED is the answer to all of our problems.
First of all, I think there are very few people who understand these kind of relationships and connections and the kind of interfaces that you need in order to make this work, and, also, then the next step being what Jane is talking about is ever if you can map it to sort of the structured language, how does that really get you to sort of information, and it really – it concerns me a lot that people really don’t have – there is very little understanding of this, and there is very little actual experience in – and maybe that is what NCI is looking at – in using this, and in doing the kind of things that you are doing, and then if you don’t build in some of these search and structured text and standards and taxonomies, et cetera, it is going to be even a bigger Tower of Babel than currently exists.
So I think any – and it relates very much to the architecture issues, and I think Carol is bringing in the broader picture of then the taxonomies are the way that data are gathered in these broader influences on health are really critical.
So I think if there is some way you can begin to even explicate this and shed light on this, not maybe come up with answers, it would be quite a contribution, because I don’t really see anybody really thinking about putting this together.
MR. HUFF: Share a couple of other experiences. I mean – and part of this goes back to Russ’s comment yesterday.
I mean, if we started out trying to do diabetic reporting without sort of any forethought or any organization, as we talked about it, we would have incomplete data, and so, I mean, the way we went about that, basically, is they said – You know, first of all, they identified that as an issue that they wanted to track, and said we think it – you know – this is important to us economically as a business. It is important to us in terms of quality of care for our patients. We want to track IVs. They went to literature. They understood and said, Okay. The things that we can track, we can track hemoglobin A1Cs. We can look at the medications people are on. We can do monofilimate(?) line tests to see – you know – sensitivity – you know – whether people are losing sensation in their feet. We can do optimalogic exams to see if they are getting secondary, and they set up terminology and said, Those are the things we are going to collect, because if we hadn’t said that, we would have had spotty data everywhere and you couldn’t have determined, you know, how you were doing.
There’s a lot of that that has to do with buy in to the clinicians, and so the clinicians actually ultimately then are the ones who are collecting the data, and they are motivated to collect the data because they do want better care for their patients, but if they collected it and they never signed anything back themselves, they are less motivated than if you give them a weekly report or a monthly report that shows what is happening in their population. So it is tightly tied to how you sort of socialize this within the medical part of that, and you do, I think –
Well, there are two parts of this. If you collect the data coded up front, it enables you to do real-time alerting and other kinds of notifications, and so – I mean, if you are coding the data, it can tell you at the time that you – you know – hit, you know, the time that you are doing the physical exam to say, Oh, did you know you forgot to do the monofilimate line test or did you know that you didn’t order a hemoglobin A1C? which means that we really try to figure out perspectively how we are going to code the data, rather than try and just harvest from natural language processing, because natural-language processing, to any degree of fidelity you want, you can process it after the fact and answer the question by looking for key words. I mean, with enough work, you can do that, but you are always then, you are always retrospective, and if you code it up front, then it enables you to do a learning and quality control in real time, as opposed to just knowing after the fact that – what your state was. So-
MS. GREENBERG: Actually, I had two other things I wanted to say, but –
MR. STEINWACHS: Quickly. Because I think Justine was next in line. We were going around –
MS. GREENBERG: Okay. I’ll try to say them quickly.
One is that I don’t actually think we should accept your supposition that this – what we have over here with Stan’s organization is not – can’t be the goal for the country, because if, in fact, you really are – I mean, if this really offers the opportunity to improve care and, ultimately, I think, probably save a lot of money, because you are not doing –
MR. HUFF: That is one of the interesting things is that doing antibiotics right saves a lotta, lotta money.
MS. GREENBERG: Then, I think that has to be our goal, and I think the fact that they’ve got 26 people or whatever, but for two million – you know – patients, to me is not outrageous. I mean, if you think of –
MR. VIGILANTE: Well, once, you have developed it, you can replicate it. I mean, it is the development –
MS. GREENBERG: Right. So I think what he has should be the goal.
Now, obviously, not for five years from now, but I think that’s gotta be the goal.
The other thing – and maybe you don’t disagree. You are just thinking –
MS. CARR: I’ll respond –
MS. GREENBERG: You can respond, but the other thing is –
MR. SCANLON: (Off mike).
MS. GREENBERG: What?
MR. SCANLON: The world is not composed of systems like his. That’s –
MS. GREENBERG: It isn’t, but it should be our goal – But the other thing I was going to say is just a little caution about this concept of – you know – disease by disease, because I guess I was – I certainly was influenced by Barbara Starfield when she was on the committee, but that – you know – more and more people have chronic – multiple chronic conditions, comorbidities, lots of different things going on, and, particularly, as we age, unfortunately, that is just the inevitable, and, then, of course, my favorite subject of functioning and some of those things which cut across – you know – whatever your health condition is. So, I think, you know, that is just a caution on that.
MS. CARR: You know, I think – you know, I love their system. Our system is close to it, and we have the good fortune to have these developers in house.
What I am thinking about, though, is as we are bringing electronic health records nationally, we have to have vendors understand what fields they have to create, and so there are quality things that come out every day, you know, that are different from what we thought yesterday or what we understood yesterday, and so my thought is more in creating an architecture that a vendor can create that will allow for leveraging this information. So it is not that I don’t love that. I think it is fantastic, and that is what we try to do as well, but how do we, today, as we sell electronic health records, say to people, You have to have – you know – all your diabetics, these 25 things, all your – and then we give them – you know – 500 things that they should have, but next year we learn that actually you also need this drug and that drug and that.
So I am trying to think in terms of building blocks, plug and play your medication or you lab value, but how to you parse those things out? And so I guess that is why I think – you know, I agree, that it is not perfect to do that scanning.
My other thought, in terms of the SNOMED, never will you teach physicians how – you know – to speak in those languages, and, in fact, if you look at the model that we have today, we have interface of coders who go through and maybe will prompt the physician to say, Did you mean blood loss anemia? Because if you did, then I can code it, and –
MR. STEINWACHS: Rank and file anemia.
MS. CARR: No, it is a big difference, and, you know, and so I don’t know. We have that model of physicians, write the best you can and give some guidelines like use this complete term as opposed to this abbreviation or this arrow down, whatever, and, then, there is a kind of – you know – synthesis that says, Okay. These are all the things – and it goes to an ICD 9 code. So maybe this is a parallel process that you scan the text and you – you know – you roll it up and maybe there’s more capability, because now you are scanning for a whole array of things, data elements. I don’t know. I mean, I agree with you. It can be perfect.
And to Russ’s point yesterday, do you want 100 cases that are complete or do you want 1,000 cases that are 25 percent incomplete, you know –
MR. STEINWACHS: We have about six or seven minutes. Carol, Kevin.
MS. CARR: Yes, a lot that I could say. I’ll try to keep it short.
I think – I drew that up there, and let me tell you why. I see us struggling as certain groups within committees and workers within NCVHS to kind of say, you know, what is the specific agenda going to be? How are we actually going to go about getting it resolved?
And I had made a comment earlier about, Look, I think Population needs it, but I don’t think it is the work of the Populations group, and somebody said, Oh, no. Whatever.
PARTICIPANT: (Off mike).
MS. CARR: Okay.
I think that, ultimately, I think we are going to have to take this back to Simon and look at overlaps of agendas, but there is just a mental model that I have been playing with is to say, Look, and no – I don’t mean to leave out – you know – confidentiality, but I did, because –
(Several speakers at once).
MS. CARR: So let’s think about, you know, what actually belongs in those intersections? And so what I was thinking was that between NHII quality and standards and security – and I am really focusing on the standard, not the security aspect – in there are taxonomies. What do we want to measure, whether it is at a disease-specific level, a metric level, a comorbid level, it is really – that is everything that we are talking about here. What do we want to start out with? Okay. How do we actually tell EHR vendors, Hey, guys, you have to have a model and an architecture that allows people to run to do research or it it’ll do NLP and whatever it is, so you have to think about that when you go into design. So dear Dr. David Brailer, if you are not thinking about quality, we are here to tell you that we are going to give you a list as these groups go into their work, and so it lives in that space. That is what I think, at least to start. Population will absolutely want to have it.
But I really – my strong passion is that Population, know what is going on there, but then push some of these other issues around linking some of this, issues around, say, functional status. Why are we talking about ICF as a taxonomy? So if anybody has read this, why are we talking about that? And that would be –
MS. GREENBERG(?): I am, daily.
MS. CARR: Okay.
(Several speakers at once).
MR. STEINWACHS: It seems to me that there is overlap, and some committee has to take the lead, and so, at least from my point of view, part of the reason for having this joint discussion was this, I would say, sits more squarely in the Quality Working group, because you are looking – I mean, you have laid out an agenda, as I understand it, of looking at the interface between IT and EHRs, and so – I mean, IT and – get this right. Come on, Justine, you are supposed to help me here.
So, you know, and I think you are right. I mean, there is an interest on the Quality side, because if you talked about what Jane is talking about, she is talking about taking this and rolling it up into national reports, the National Quality Report, the National Disparities Report that says not only you capture, but you have to be able to get a population estimate and not just an individual estimate.
MR. VIGILANTE: Well, very quickly, because I know we are running out of time, and maybe we can talk about this later – I do want to bring attention to something that you alluded to earlier, which is things that are going on at NIH, and I think we need to actually broaden our field of vision to include the research agendas that are going on, because they incorporate the aggregation of data of populations – of research populations, and some of them are quite large, and the idea that we would harmonize the same language and tools for mining data in that environment from registries or data warehouses with what we do in everyday life in taking care of patients would be a very valuable thing to do early on.
And two particular things I would draw our attention to would be the Cancer Bioinformatics Grid or CBIG, which is a – for those who don’t know – is a project to link 50 NCI-designated cancer research centers across the country on an open-source, informatics network to share data, research data and software tools to do cancer research, and it is – they are in the process of harmonizing standards, vocabularies and the like. Their standard vocabulary is called CA Core, which is – and it is not SNOMED, but the idea that it should be harmonized with these others, with yours, but – and the critical thing is that, of course, to make this relevant, they need to capture clinical data, and the most efficient way to do it is from EHR sitting on a community – not just on – but not just at the cancer center, at the community level, so they can actually more cheaply recruit participants in their trails, and so having fields defined in which you can identify a) prospective enrollees for trials, but also to follow folks along in their trials in terms of complications, which are a version of a quality outcome, and I think harmonizing this is a a) very important, but b) the other is the National Children’s Study, which is going to follow 100,000 maternal child pairs for over 20 years, another large population that has to do with capturing data, establishing terms and definitions, and, once again, if we go back to the theme of our role, sitting in the middle and harmonizing, trying to bring together agencies that often don’t talk to each other, even within the NIH, never mind outside the NIH, to kind of integrate with what we are doing, with the idea that, you know, we don’t have infinite resources, you know, and we can leverage other work to save money and move the ball, I think, will be very important.
MS. MC CALL: I also think to do inventory and research for purposes of overall compensation, we are not going to be able to do it all initially, and so we are going to have to pick, in terms of – the harmonization work is actually going to be hard. It is going to be hard work, and so we are going to have to pick which ones get harmonized and into it first, and so some criteria for actually doing that could come from work that has already been done by the IOM in terms of just simply – you know – illness burden on society as a whole.
MR. VIGILANTE: We should just hear from these folks as to what they are doing and what they are thinking about plugging into another framework and not creating a parallel redundant environment.
MR. STEINWACHS: Anything else for today?
On the population side, I guess the next steps were to have a conference meeting in December. Mainly that was to make plans for hearings around surge. I think the next steps on this other – you know, I guess at least I would sort of echo my feeling that – you know – it seems to me a little more squarely in the leadership role of the Quality Workgroup and Populations have an interest and so on, and it overlaps, so people can play with it.
MR. HUNGATE: Around the registries, there is some potential real synergy, because there is an awful lot of content there, and you look at, listen to what Intermountain Health has done, how long it is taking, the stages it has gone through. You know, there is getting information in, getting it in the right format, getting it out and getting it to the right place.
The translation back from Population Health to individual health is still a problem in – care, and so I think there is content there that is better focused here at Populations, too. So I think there is a piece there that does tie.
PARTICIPANT: Oh, there is no question about ties.
PARTICIPANT: We aren’t going to let you go alone.
PARTICIPANT: I am just saying that it seems to me that this much more squarely gets EHR and Quality or ITM Quality –
PARTICIPANT: EHR towards the population side, you might be talking more about surveillance and those types of things that you capture at the point of encounter that would be relevant –
(Several speakers at once).
MS. CARR: However, guys, I would like to put something on the next agenda, which is the fact that even though I would agree that it belongs more squarely at least initially with Quality and with individual health, I also know that, from a day-to-day practicality standpoint, this has been a great dialogue. The Quality Workgroup is – you know – understaffed and underfed, and so I think that let’s bookmark just how we do about that, and I think that those are conversations we can have with Simon, that we can have offline. So I don’t want to do – you know, have kind of, Well, it is over here and – Yes. Because there is just too much to be done.
MR. STEINWACHS: On the Populations side – I think what we have talked about is trying to lay out maybe three hearings for the next year and maybe two letter reports, and so what we have picked, I think, at this point, unless there is a radical change, is the surge issue – this has been articulated – and the other is we have a working subgroup on data linkages issues and they are laying out, and so part of this is really trying to look at where the barriers and where there may be some real payoff, if we could overcome some of the problems to find a link, for instance, SSA data, Medicare data.
PARTICIPANT: Right – Right. And I think that is a good agenda.
MR. STEINWACHS: And, you know, we may or may not play out that you could use a case example like Katrina and looking at outcomes as a way to talk about what kinds of data sets, but I think that would be the other piece that right now is not on our agenda, and so, you know, we would love to work together, because these all do relate back – issues in the population –
PARTICIPANT: And we’ve got three hours of Quality Workgroup this afternoon, and we welcome anyone else to join us.
PARTICIPANT: Sure. Yes.
PARTICIPANT: And meeting all day tomorrow.
PARTICIPANT: And all day tomorrow.
(Whereupon, the subcommittee was adjourned.)