[This Transcript is Unedited]
Sheraton Crystal City Hotel
1800 Jefferson Davis Highway
Crystal City, Virginia
Agenda Item: Call to Order, Review Agenda
MR. REYNOLDS: Welcome to the second day of our hearing of the National Committee on Vital and Health Statistics. NCVHS is the main health policy advisory committee to the Secretary on health information policy. My name is Harry Reynolds. I work with IBM, and I will chair the committee for at least the next few hours.
As is always usual when you are a lame duck, the World Cup has taken over today, so I appreciate those of you that tore yourselves away. In a minute I am going to open it up for introductions. You can if you want to say where you work and the country that you are rooting for if that is a necessity. But we will go around the room and get introductions. Members of the committee, if you would please note whether or not you have any conflicts of interest based on this morning's meeting. I do not.
(Whereupon, introductions were performed.)
As we mentioned yesterday, we will just be meeting this morning. We will be hearing about the Community Data Initiative and the subcommittee report-outs based on the discussions yesterday. Then even though at 11:00 it shows that I will be discussing the September 2010 and future meetings, I believe that is when the Celtics fan will step up to take over the discussion there, so that I don't leave this in any inappropriate way as we move forward. Then we will be moving over to the NAS Keck Center for our celebration.
It is nice to have Ron in the room. He was the chair in 1986. I had a wonderful opportunity to spend time with him in Charlottesville. If you get a chance, like that spirit we talked about yesterday, you will feel the spirit from 1986 just like we feel it today. It made a huge difference in everything that is going on. So it is an honor and a privilege for those of us that know him to have him join us this morning and later this afternoon.
Our first discussion is about the Community Data Initiative. Jim Scanlon mentioned a little bit about that yesterday. I would like to now turn it over to Dr. Bilheimer.
Agenda Item: Community Data Initiative
DR. BILHEIMER: Thank you very much, and good morning, everyone. I would like to apologize in advance. We had a little bit of difficulty getting this presentation uploaded. It is going to send periodic rude messages across the screen that I will delete very quickly, but that is some of the complications of mixing two technologies, so I apologize in advance.
I want to talk to you today about two things, the Community Health Data Initiative and the Health Indicators Warehouse which NCHS is developing, that are very closely linked, but are actually separate and distinct entities. Both very exciting, and I hope to share some of that excitement with you about what is going on in HHS.
I am going to start by talking a little bit about the Community Health Data Initiative. It is, for those of you who have read the HHS open government plan, you know that this is one of the five flagship initiatives of the HHS open government plan. It is designed to promote the dissemination of national, state and community level data that can be used to develop applications to promote health at the community and state and national levels and promote action and promote feedback to HHS about health issues at the community level.
The person who has really headed all of this is Todd Park, whom many of you know, who is the recently appointed HHS Chief Technology Officer. He envisioned when he came on about a year ago the development of a network of people who supply data like us at NCHS, and then people who developed applications that would use those data to create value for end users.
As part of that, he wanted to see how we could provide a wide range of health indicator data in a very user friendly form to a wide variety of users, and then how we could recruit people to come and use these data in ways that we had never ever imagined before. And believe me, I had never ever imagined some of the ways in which people are now using our data. Then use these applications to create awareness in communities about the health status of their population, about policies that they might want to consider or change or interventions that they might want to develop.
This is a very complicated slide which is a design of a conceptual framework for the Community Health Data Initiative. Over on the left you can see this target with three rings in it. Right in the center are end users. Those end users may be patients, they may be consumers, they may be health care providers, but they may be a whole lot of other people, too. They may be real estate developers, they may be corporations, they may be researchers. The end user community in this vision is very broad and very eclectic.
Then in the next ring outside that ring of users in the middle are the potential applications. Some of them seem relatively straightforward, best places to live, ratings and rankings, interactive health maps. Some of them may not be things that one is necessarily quite familiar with. People got a little nervous when they saw viral gains out there, and then things like enhanced Web searches and challenges to communities to promote new ideas and new developments.
Then the outer ring are the innovators, the people who do all of this. They range from the traditional data analysis firms to a wide range of other potential innovators, Web search providers, nonprofit organizations, technical companies and so on.
So that is the framework for the initiative. But then off to the side there is the issue of what are the data that you are going to use. The data are coming from a variety of different sources. The main contribution that HHS has made is this first one, the Health Indicators Warehouse.
The Health Indicators Warehouse is something that we at NCHS envisioned about a year and a half ago. It had nothing to do with the Community Health Data Initiative at all. We now provide health indicator data for a wide range of users. Some of them you are very familiar with, Healthy People for example, Healthy People 2010 and now Healthy People 2020. We are also though developing indicators for the Community Health Data Initiative, for the county health rankings that used to be known as Match, and also for the state of the USA.
What we found was that we were using an enormous amount of resources, programming almost identical indicators with slight differences, maybe in age breaks, maybe a slightly definitional change, for a wide variety of organizations.
What was happening was, first of all, we were using a lot of resources, essentially doing the same thing over and over again with a slight twist. Second, there were many different indicators or metrics for the same essential concept beginning to develop out there. We thought this was both inefficient and also not good for users who wonder why in this set of data it says that the childhood obesity rate is X and then in this set of indicators it says the childhood obesity rate is Y. It is because of slightly different age breaks or definitional differences or whatever.
What we thought about was the development of an indicator warehouse that all of these organizations plus the public and a whole range of other users could use that would be user friendly, have a very nice front end with a lot of mapping capabilities, trend capabilities, so that anybody could go in, draw down indicators and also link them to evidence based interventions.
We had started on this when Todd Park arrived in Washington last August. He said we are looking for an indicator warehouse and we said, actually we are developing an indicator warehouse. The rest I guess is history. We are now developing the data source that is going to be the HHS hub for the Community Health Data Initiative.
But it is not the only data source. There are many others and they are growing. There are other federal data sets, and I can tell you about some of those. We are getting state and local governments interested and they may be providing data. There are private sector data suppliers and a host of potential others. I can show you one very interesting example later this morning.
We thought about this and Todd Park thought about how we should be going forward. He was doing this in conjunction with the White House. They organized a meeting in March of this year in conjunction with the IOM. It was a relatively small group of people, about 40 people at the IOM, and it brought together Web 2.0 apps developers, business leaders, community leaders, data people like us from the government. We were basically charged with thinking through what we could do with community level data and what might be done to develop some applications within 2010.
It was really a remarkable day. At the end of the day there were about 19 proposals for applications using community level health data. What was even more surprising, a host of organizations volunteering to develop them in 2010, if we could get them the data, which was a challenge.
At this meeting, HHS essentially made a commitment of what it would provide in the way of data for 2010. First off, and what has got many people very excited, is a new set of Medicare community level indicator data that has never been released before. CMS is currently working on those indicators, and they will be in the Health Indicators Warehouse.
The second was the Health Indicators Warehouse itself. We made a commitment that we would have a version 1.0 of the Warehouse up and running by December of 2010. Do I have many sleepless nights? Yes.
Then third, because we had people who were ready and willing to go to develop apps and to demonstrate how data could be used, we were charged with seeing if we could put up an interim website with data on it, not with all the user friendly content and the bells and whistles, but a basic website that people could go to that would have data that they could experiment with. Those data were for Medicare Compare, Healthy People 2010 because we don't have Healthy People 2020 available yet, though we will be by December, the county health rankings data, the community health indicators status data, the SUSA indicators, and also the AHRQ state profiles and the USDA Food Environment Atlas.
I am very proud to say that NCHS through an incredible team effort got that worksite up in a week. It is now available and I can send you the links to it with links to all of those data sets. But for the most part they are all Excel spreadsheets. Like I say, they have no bells and whistles on them at all, but the data are out there.
Frankly, I was not anticipating that we would get an enormous outpouring as a result of putting it up there, though I was very pleased that we had. We should think again. Four months later in the beginning of June, HHS organized a launch meeting for the Community Health Data Initiative, again organized by the IOM and led by Secretary Sibelius. It was the hottest ticket in town. We took over the whole of the building on Constitution, which had been closed; the National Academies building has been closed for a year for renovation, but they opened it specifically for this event. We had apps developers from all over coming to demonstrate the apps that they had developed, for the most part from the data that we had put up on the interim website, but in some cases from other data sources which were equally interesting and intriguing.
The purpose of this meeting, we had a huge group of people there, and others watching on a webcast. The webcast is still available for those of you who want to see it. The idea was for us to get feedback, to demonstrate what could be done to get apps developers and community organizations interested in taking this forward and to generate ideas for the future.
I am just going to show you a few of the applications that were demonstrated at this meeting. This is a screen shot of the Analyze the U.S. website of Palentir Technologies. Palentir Technologies has primarily been involved in visualization activities for the Defense Department and the intelligence community. They were extremely excited about the idea of having community health data and they gave a presentation that really wowed the audience, to put it mildly.
What they did, they took a very specific set of data from the website which was childhood poverty rates. They took county childhood poverty rates in Texas and they identified pockets of childhood poverty in Texas, and then they overlaid on that -- they collect any piece of publicly available data from government. That may be Script, it may be Tweets, it may be anything. They organize it and overlay it on the data set.
What they overlaid on this first off was all the community organizations in those high child poverty areas in Texas that serve children in need. You could see the disconnect between where the organizations were and where the really poor children were. Then they overlaid on top of that federal grants, and they showed where money to support health and welfare of children was flowing in those counties or if any was flowing in those counties at all, relative to where the poor children actually were. It was an amazing presentation and got the audience's appetite quite whetted.
The next is Microsoft Bing.
MR. REYNOLDS: Doctor, are you willing to take questions?
DR. BILHEIMER: Sure.
MS. FRANCIS: I just wanted to ask you with respect to the way those data sets were used. They were bringing together data sets that had not been previously combined, whether there were questions raised or any kinds of issues that we would then need to think about with respect to privacy, particularly on the risk of reidentification of what might have been data sets that did not reveal any sorts of individual identities?
DR. BILHEIMER: That is an excellent question. The data on the interim webpage and that will be in the Warehouse are not micro data. They are indicator data. They are aggregated indices for obesity rates, mortality rates, poverty rates. We follow our disclosure requirements in terms of sample sizes, so we do not publish data for small counties, or we combine data over meaningful use years. So we are very conscious of the disclosure risk issues.
But no, there are no micro data involved, and we are very, very careful about the cell sizes before we put anything out.
Please stop me at any time.
This is a screen shot of Microsoft Bing's website. They have taken all of the community health data, and they are using it in a variety of different applications.
One, they are looking at quality of care in hospitals for using the Medicare Compare data. This shows you a map of the Seattle area. What they did here was to look at smoking rates in different parts of the Seattle area, and then took the case of someone who was looking for an apartment who wanted to work in Seattle and wanted to be in a smoke-free environment. They overlaid on top of that where all the apartment complexes were and I think they even had rents in there. So if you wanted this type of a place to live and you wanted to be in a place where very few people smoked, this might be the part of the region that you would want to live. Intriguing, it was very interesting to watch.
The next is a screen shot of Google fusion tables. Google has taken all of the community health data and put it into their fusion tables. So for any of you who have used fusion, you can now with the device bring all sorts of different data sets together and map them and chart them in different ways. The community health data are now in there and can be used in that way.
They also are developing an application using the Compare data, the Medicare Compare data, to identify high quality hospitals and to make comparisons of hospitals in different markets. I think it is really interesting to watch, because Google and Microsoft seem to be having a competition here about who can use community health data most effectively. There have actually been some blogs on the Web writing about who is better, Bing or Google, at this point. So we are having fun watching that to see who is going to come out ahead on that one.
This is a very different application. It is a web shot of Sonoma County's Network of Care for Healthy Communities. Sonoma County is the case study for a project that is being developed jointly by the National Association of Counties and the Healthy Communities Institute.
What this dashboard does is, it has both an individual component, so people can look at their own individual health measures, but it also primarily has a community dashboard. You can look at the indicators. As you can see down here, it has little dashboard indicators showing you how you compare with other California counties on this indicator, private insurance, and there is another one with obesity, and a whole host of indicators.
It also provides you with links --
MR. REYNOLDS: Doctor, we have a question, please.
DR. BILHEIMER: Sorry.
DR. OVERHAGE: If I can put my pessimist's hat on for a moment, this is a neat visualization. How rapidly do data sets turn over? You have a display here with a needle. Those are very cool fun visualizations when you have something this dynamic. These data sets are relatively static, and perhaps a year or two old, if you will.
A lot of the things we try and do, if you are looking in the rear view mirror and you only get to glimpse it once every ten miles, you can't drive very well.
DR. BILHEIMER: And the point is well taken. It is a point that we have made repeatedly. With the data that we have, we are constrained on what we can put out.
I think how people are thinking about this is that these data are not going to be able to be used for detailed day to day, week to week, month to month tracking of the effects of interventions, policy changes and so on. They are more a call to action type of indicator, which is how the county health rankings have been used. Then, which is where we get into some of the other data supplier issues, how does the community then say, take the information and say, we have a real problem here with obesity, we would like to introduce these interventions, how are we now going to track at the community level how effective we have been. Then two years down the road or three years down the road, there may be another signpost from here.
That is one of the issues that we have tried to get across to people. We will do our best to get data out, but there are only so many things you can use it for, and criteria well timed tracking of real time interventions is not where action is for these. Obviously there are other data sources that enable you to do that. I think what we are seeing is the interest in using both.
DR. OVERHAGE: The optimist side of the comment is that this kind of thing exposes the data and its limitations in a way that may help people drive better sources. So putting a light on the data is always a helpful thing in terms of improving it.
DR. BILHEIMER: Yes, I think that is right. At the meeting on June 2, we got enormous feedback on data that people would like to see. Hearing that in a group meeting with a lot of people who are concerned about data policy going forward is really helpful.
At the same time, we have tried to make it clear all along that we are not dealing with micro data. Others are dealing with micro data, and that is fine, and people have come to us and said, how can we get the micro data that underlie your indicators. The answer is, you have to go to the agency and follow their procedures for getting micro data.
DR. FERRER: Can I follow up? So right now your publicly available data is actually constrained based on what Dr. Overhage just spoke to, correct?
DR. BILHEIMER: Yes.
DR. FERRER: So if you went one step further and tapped the academic medical centers which are the suppliers of the data that Dr. Overhage -- is there anything going on there? This is an incredibly powerful NDDM proxy to get you closer. It is clearly not close enough for research clinical medicine. So where is that?
DR. BILHEIMER: That is not part of this at the moment, but could well be. This is a very large tent. If you remember that chart about all the different data sources, there are lots of things that we are not going to have in the Warehouse, but other people are now popping up and saying, given this ecological community that is developing of people who are developing data and people who are using it, can we play, can we be a part, can we provide our data, possibly in a different way, a different warehouse or through a different facility.
The answer is, absolutely yes. Things have moved so rapidly in six months. In fact, one of the applications that I will show you in just a minute is an example of something that we never even envisioned, but a new way of crowd sourcing data that is now being used in asthma attack prevention.
So yes, there are all sorts of opportunities. I would be happy to put you in touch with people.
DR. FERRER: One of the things that oftentimes people don't talk about is that from a research competitive standpoint, from a academic medical center view, you are able to give me the information, we will use it, we will touch it as long as you are not at a competitive disadvantage, because clinical medicine is still a competitive environment. So it is good as long as I can still be number one. So that is why often that people don't like to bring it up.
DR. BILHEIMER: The point about this is that we are putting the data out there and saying anybody can use it. We are not going to control what people use it for. Obviously we have to be very careful about what we put out therefore.
One of the things that is very encouraging is that the big apps developers, the Googles and the Microsofts, are extremely concerned about using it right. They have called us and said, can we have technical consultations between you and our staff to make sure that we are interpreting these data appropriately. But once it is out there, we let it roll and see what happens.
One of the things that we are letting it roll, this is the webpage of Me You Health. Me You Health develops games. They have developed a game called Community Clash, which some people are saying one of these days will become the community health farm bill. It is a competition to help people play with each other to help them understand the health status of their community and what their community can do to improve its health. Interesting to watch that one. You can go online and try playing.
Finally, the last of the applications that I am showing is called Asthmopolis. This had nothing to do with our data at all. This is entirely separate and independent. What the folks at Asthmopolis have done is to put little tiny GPS trackers on inhalers for asthma patients. What they are doing is both enabling providers to track what is happening to their asthma patients, but through crowd sourcing they are able to identify regions in parts of cities where the air is bad on a particular day, because they are picking up a whole lot of inhaler use in a particular part of a city on a particular day. Very, very intriguing. It is only just started, but they were able to give a demonstration of how this is beginning to work.
So this is a very wide open tent, and this is fine. This is part of the Community Health Data Initiative, and it has nothing to do with our data whatsoever. It is a totally independent data source. One of the things that we were hearing at the meeting on June 2 was, crowd sourcing data was going to be a mechanism that we were going to see grow.
MR. REYNOLDS: Doctor, we have got a question.
DR. BILHEIMER: Sorry.
MS. FRANCIS: I just wanted to put the privacy question in there again. On GPS tracking, possibilities are quite impressive.
DR. BILHEIMER: I am not the government at all.
MS. FRANCIS: I understand that, but it could be combined with government data.
DR. BILHEIMER: It could.
MS. FRANCIS: And it is also in your slide deck. So I am just interested in whether they did demonstrate their privacy policies and consents along with --
DR. BILHEIMER: I have not seen their privacy policies and consents. I can check on their website and see if it is there.
MS. FRANCIS: Well, I'll help you to do that. Thank you.
DR. BILHEIMER: For CHDI, the next steps for the initiative are what is called the Health 2.0 developer challenge. Health 2.0 is a company that is based on San Francisco. They have thrown out a challenge for the development both of the best ideas for applications for the use of community health data and also the organization of what they originally called hackathons, but that got everybody a bit nervous, so they changed the word to code-a-thons, which is something that the Sunlight Foundation has used extensively to bring together programmers and web programmers to develop solutions to problems in a short space of time in an intense environment.
Health 2.0 is organizing code-a-thons and team competitions for ideas and also for applications development around the country between now and the first week of October, when the Health 2.0 conference will take place in San Francisco when the final challenge will take place. That is the next set of events, but there is a whole lot going on.
Once you throw something out there like this, there are mushrooms growing everywhere, and it is difficult to keep pace with everything that is happening. But back on the farm we have a Health Indicators Warehouse to produce. It is not only to serve the needs of the Community Health Data Initiative. Our primary purpose originally and still primarily is, is to serve the needs of our most critical clients, which is Healthy People, CHSI, the county health rankings and so on.
This is the functionality that we envision for the Warehouse. I emphasize at the top, there will be no individual level data. These are pre-constructed national, state and local level indicators. We will have a very user friendly interface. We will have linkages to evidence based interventions. We will have web service capability, which a lot of the apps developers are extremely interested in having. We will also -- and this is really critical -- have supporting meta-data to make sure that people understand how to use the indicators. Actually, constructing the meta-data is about as complex as developing the indicators themselves, possibly more so.
For us, the next steps first of all is to have version 1.0 running in December. We get calls, e-mails, around the clock saying couldn't you just add this, why aren't you adding that, have you thought about this. We are having to be quite hard-nosed about it, saying great idea, and we will certainly consider it for version 1.1, 1.2 or 1.3. But right now we have to have an operational website by December.
We are also working on securing the funding to maintain it. We have pieced this together with contributions from multiple federal agencies, and we are trying to insure a funding stream going forward. We have to think about harmonizing indicators to the extent that seems reasonable. In some cases there will be more than one indicator of a concept in the Warehouse, because agencies really do have different needs for a different measure.
We have to develop a process for selecting new indicators, and working on updating and improving. We are in fact having some focus groups this summer to show people where we are right now and get some of their ideas, particularly for the web service capabilities about things that they would like to see in that. But we are very heavily focused on having a product by December, which is what we are committed to do, and which we have to do for Healthy People. Healthy People has to have this running by December. Then in 2011 we can start playing around with some of the bells and whistles.
DR. OVERHAGE: How does this relate to or connect to the CDC's Wonder project?
DR. BILHEIMER: It is separate from Wonder. Some of the data that have been in Wonder, the Healthy People data, will be in the Warehouse. There will be other data from Wonder that will end up in the Warehouse, but right now we only have Healthy People in there at the moment.
Please contact us if you need any more information about the Warehouse. If you want to see more information about the Community Health Data Initiative, you can go to the HHS open government site and like I say you can download the videos there from the meeting on June 2nd.
MR. REYNOLDS: Let's open it to questions.
DR. GREEN: Where is NIH in this?
DR. BILHEIMER: Where is NIH? They are interested in this and would like to participate more in this. They also would like to help fund this, some of the Institutes.
We need to have the Warehouse vetted through the HHS IO Governance Board, which means going through enterprise life cycle processes and having it certified within CDC, before NIH can participate. For IT projects, they want to have the HHS IO Governance blessing going forward. That is the other thing that we are very heavily involved in right now, is reaching the IO Governance standards for the Warehouse.
DR. GREEN: Can you be more specific about who they are at NIH?
DR. BILHEIMER: There are folks in the National Cancer Institute who are interested. I am trying to think, maybe in NIMH, but I think primarily the National Cancer Institute.
DR. GREEN: I would flag as obvious the immediate need that NIH has with this capacity for the CTSA boards, which are going to go to 60 sites extramurally all across the country, particularly the community engagement portions. All of them are required -- every awardee has to have a community engagement component. Several of us at this table are involved in this NIH initiatives.
This county level data is essential to the community engagement component in the NIH-CTSA arrangement. The National Center for Research Resources strikes me as being an immediate need of the capacity and likely to be interested and likely to be responsive. It would be nice if the CTSA awardees -- there are 48 of them now -- if this presentation could go to the directors of those 48 CTSAs for a bit of interest that would come from all across the country from the research community.
DR. BILHEIMER: Thank you.
DR. HORNBROOK: Just a postscript. Barbara Alving is the Director of NCRR.
DR. BILHEIMER: Sorry?
DR. HORNBROOK: Barbara Alving, A-l-v-i-n-g. The PIs have regular meetings in Bethesda, and they regularly have a program which you could present this to, and suggest that all their community programs support this effort.
DR. BILHEIMER: Thank you
MR. LAND: In response to Marc's comment about the timeliness of data, I reported yesterday in the Population Committee about some new things happening in biostatistics. One of those is a plan to develop indicators that will be published by the National Center, certainly on a semiannual basis and even on a quarterly basis.
I don't know if they are going to be at a county level or not. They are still in the process of defining what those indicators will be, but this will be the first time that vital statistics data has been available even less than two years after the event. So it may ultimately go into this data Warehouse. This is the first time I have seen this. This hasn't been discussed with my association but there is that opportunity.
DR. CARR: Thank you. This is a very, very exciting initiative and a great presentation. This is a topic that has run through a number of our discussions along the way.
One piece of this is, how do we develop expertise in this type of thinking and use of data? Where do you see the centers of development for this expertise, for this workforce who knows how to do this?
DR. BILHEIMER: It is a question that I have been thinking about, too. I think almost without saying, I don't think this would have been possible without Todd Park.
DR. CARR: Without -- ?
DR. BILHEIMER: Todd Park. Todd Park came to HHS with a very different vision and understanding of data and how to use it, and also came from a Web 2.0 environment. He is educating us on a day to day basis on things that we should be thinking about and how to think about it.
But an awful lot of our learning, and we are learning by the seat of our pants, this is not a traditional HHS-NCHS type of activity, is through interactions with the Googles, the Microsofts, the Red Hats, O'Reilly Media. We had conversations with Tim O'Reilly on his treadmill, discussing indicator data. So it is a learning by doing.
But I think we do need to be thinking about how we train people in this dual understanding of the importance of high quality data, the protection of confidentiality, and also the ability to get data out there so that people can use it in these creative ways.
One of the things that I am hoping is that over time, we can have for example fellows and interns working with us who come in with the web background but not necessarily with the data background, whom we can train and work with.
DR. CARR: Thank you.
DR. HORNBROOK: Two questions. Are you aware of the SEER registry and the interest of getting the SEER data into this? Is that what they are thinking about?
DR. BILHEIMER: Right now our discussions have -- they are very interested in county level data. Our discussions with them focused more on county level data than specifically on the Warehouse.
No, we have not talked about getting SEER in here. It is something that could be over time, but again it depends. We are not talking about putting micro data in there again. It would be indicators coming from SEER if that was to happen.
DR. HORNBROOK: No, I understand, but the issue of giving communities the ability to track cancer incidence rates, cancer death rates by county, to track environmental carcinogens and the effect of the kind of environment you live in, if you live in an environment with heavy radon do you see more lung cancer, kind of thing.
There is some evidence now showing that an epidemic of head and neck cancer is starting to emerge among teenagers, related to HPV, oral sex. So it raises a whole issue of how communities want to deal with the issue of HPV vaccinations and things, which gets into health behaviors.
The other question is, is the VA involved at all?
DR. BILHEIMER: The VA is not involved, no.
DR. HORNBROOK: Because I can visualize the notion of where are the vets of the various wars, where do they live, what is their health? Obviously the VA has had a tremendous amount of health data about veterans that use the VA facilities, and they can put together county level health indicators for the veterans that they are treating in that particular county, either that or by the veteran's address, if the wanted to do it. I would think that in today's world, with the Afghanistan and Iraq stuff going on, you would want to have some degree of indication of the regional variation of the burdens of the war on our community.
DR. BILHEIMER: I think that makes sense. The agencies that have been primarily involved are those that we have been serving all along, because their indicators are going to be in there. So it has been primarily HRSA and ODHP for Healthy People.
But yes, there are other agencies involved. The Office of Minority Health is involved, the Office of Women's Health is involved, and SAMHSA is involved. They are the ones who have mostly been involved at this point. But these are very early days yet. We have to keep reminding ourselves of that.
MR. LAND: One of the cautionary things that I would think about this is that when government publishes data and overlays the different indicators, we are always cautious about association versus causation and those issues. When you have people who are whiz-bang at software, they may not be trained as an epidemiologist, and they may not be as cautious as what we would be. Certainly you find that with newspaper reporters and the like oftentimes.
So I just wonder, have you thought through, how can you reintroduce those cautionary notes as people start overlaying things that may look like causation, when we would know that they probably aren't? How do we guard against those types of things?
DR. BILHEIMER: There is only so much that one can do. Either you have a free market out there and you put data out there, or you don't.
We are putting in every caution that we can. We put in as many cautions as we can in the meta-data. For example, we want to have confidence intervals around estimates. When you start getting in county estimates, confidence intervals become very important.
We talk with these guys and they want to talk to us, because they are concerned about getting the data wrong, too. Those are some of the big guys. That is not to say that somebody somewhere isn't going to take the data and use it for something that would be totally inappropriate. But that can happen anyway when you put public use files out there. That is just the nature of the beast. But we do our best, and we try and work with as many people as possible to try and get them to understand what the data can and can't be used for. But sooner or later somebody probably will, I expect.
PARTICIPANT: Just a brief comment and then a question. First off, excellent work. I appreciate what you are doing. These days I am involved in community activities, and we are constantly looking for data to track to see if any of our interventions are working. Obesity is a good example.
Admittedly, I have not followed this issue nationally, but I can tell you that historically, 20 years ago this committee was talking about linkages from data set to data set. I assume from what you have said that not much has happened. We argued over unique identifiers. Some argued for use of the social security number. But it would be great if somehow we could link indicator sets from one to another on an individual basis, recognizing that out of privacy concerns you would then have to aggregate the data. But it sure would be helpful, and it would deal with some of this timely issue that we are facing with data that is two or three years old. Just a comment.
MR. REYNOLDS: Doctor, thank you very much. Excellent presentation, very thought provoking at the right time for us as we just finished a paper on the next wave of health information and usages of it. Perfect timing. Couldn't have been a better time to evoke emotions and enthusiasm and concern. Thank you very much, really appreciate your time.
DR. BILHEIMER: Thank you.
Agenda Item: Subcommittee Report Outs
MR. REYNOLDS: Let's move next to report-outs from the subcommittees. I just listed Quality, Populations, Privacy and Standards. If anybody isn't ready yet and wants to go last, otherwise I would like to start with Quality. Since Quality is run by the incoming chair, that would be a smart thing for me to do, probably. Would you like to move to later in the program? That is not a problem.
DR. CARR: Give me a minute, because I was counting on my buddy Matt.
MR. REYNOLDS: Okay. Privacy has been willing to jump forward.
DR. STEINWACHS: Yes, we are always prepared. We held hearings on Tuesday regarding sensitive information, specifically to try to further our understanding of what are different sensitive information categories, and within those categories what information really needs to be considered sensitive.
I will give you an example of that with respect to mental health information. Everybody likes to paint mental health information with a broad brush, are certain meds and the like part of mental health information, when the reality is that medication may be used for a whole variety of non-mental health related purposes. So we wanted to try to understand specifically what is sensitive in the mental health realm. That is just an example.
We heard testimony from mental health individuals, people that are involved in genetics, child and adolescent, reproductive.
MS. FRANCIS: Domestic violence, and the kinds of information that may not seem so sensitive but could be really scary if it fell into the wrong hands, such as physical location.
MR. HOUSTON: Walter calls it contextual sensitivity. I think I call it situational sensitivity.
But nonetheless, the hearings went very well. As a result of the hearings, we have been working to put together a draft letter that we really would like to get out to the committee for approval in September, because this is an area of immediate interest by the people that are doing the -- and in development and the policy committee and the like.
We would like to try to get this out. Towards that end, our hope is to try to focus on trying to define these categories in order for individual HIE's and the like to take that information back, apply it to their own circumstance, look at their own state laws. So we are not trying to overlay the whole idea of what are the other regulatory considerations, but we are trying to categorize sensitive information so that people can take it back and try to apply it in their own organizations.
So we have already started working on the letter. Leslie did some great work on it yesterday, the subcommittee as well as some individuals probably worked for four or five hours on it yesterday. We are going to do some conference calls and circulate the letter internally, hopefully getting something to the committee for its review prior to September, maybe in August, so that we can try to refine it and bring it to closure in September.
MR. REYNOLDS: Questions for the privacy group?
MS. FRANCIS: I might also add that we are looking forward to having hearings on governance in September probably.
MS. GREENBERG: I might just ask about that, because I noticed that at your meeting yesterday. Are you interested in having a hearing in conjunction with the full committee meeting?
MS. FRANCIS: That would be ideal, but if we don't have priority for that, we would work with you to schedule it at a freestanding time.
MR. HOUSTON: I am a member of the tiger team that has been put together for privacy and security. The tiger team has talked a little bit about wanting to start to address governance in the August time frame. There have been other discussions about other groups looking into governance. We certainly don't want to step on toes.
Leslie and I had a chance to meet with Devon McGraw to discuss how do we coordinate activities between the different groups and make sure that we aren't overlapping and that we are applying all of our resources that are our highest and best use. So we are going to make sure we are working very closely with Devon to make sure that we aren't doing something that just doesn't make sense.
MS. FRANCIS: We also have talked specifically with the staff person at ONC whose responsibility is governance, and they are very interested in hearing what we have to say.
MR. REYNOLDS: So John, having been involved in that subcommittee for a long time and a lot of the body of work that we have done, somebody kidded me last night about the train left the station and it is going really fast. Now the bus drivers are Google and Microsoft. I am just making a point.
Since you are working on the other stuff too, is it really converging fast enough that with everything that is going out there, with all the electronics and everything, that there truly is pragmatic privacy and security? Pragmatic is the key word that I am using, because nobody has come up with practical incent yet, nobody has come up with any of these other things.
So where is it? Give me a kind of a state of the union.
MR. HOUSTON: I'll give you my version of it and maybe Leslie will then give her perspectives as well.
I think the reason why this tiger team has been established is because of the fact that there are concerns that there isn't enough movement on some of the underlying privacy and security needs. I have been pushing governance for a long time, because at the end of the day you really do need to have a body or bodies out there that really do provide the oversight and the enforcement that is necessary to insure that adequate public trust exists.
There are some other issues that need to be addressed. I am going to let Leslie speak about this issue of non-covered entities, but I have personal experience dealing with a situation like that today, and I think that these HIEs are going to become -- and NHIN hopefully becomes an authoritative rich source of information. Yet absent good privacy and security in dealing with issues like non-covered entities which haven't been dealt with yet, I think we have got some real issues.
So again, the tiger team is intended to try to help further that, but I think we do have a lot of work in this area.
MS. FRANCIS: Governance itself is an interesting term. When I was talking with Justine about her interests and so on, I mentioned governance, and she said, wouldn't it be interesting to know who all the players are.
Actually, if you think about governance, it can be everything from making sure that there is a designated chief privacy officer somewhere who keeps the organization on the appropriate path, all the way to very strong governmentally related regulatory. There has been some discussion about soft law versus hard law and so on in that space.
I made a little preliminary list, John has added some already, that I think I sent you, Justine, and that I sent around to the privacy folks. It is amazing, the number of people who potentially have a regulatory interest, all the way from organizational privacy officers to private sector certification, C-CHIP, trustee and so on, to the panoply of state and federal agencies. So it may be that what we contribute, at the very high level look at who all the actors are, but that is the space we are thinking about, yes.
DR. HORNBROOK: Just a couple of questions. To what extent should we the committee be worried about helping consumers understand where their privacy risks are? I am thinking about, when people are keying in their personal health information for their doctor or for their prescription or whatever, they may be working from home on a wireless network or on a wireless appliance, where and when are they at risk for information going out to somebody who is listening in on them?
Then what about the ISP provider? How much of the data that they transmit through do they actually keep? What are the controls that those providers have under any data they keep?
MR. HOUSTON: That is a great question. I think the reality here is that especially in the PHR space, there aren't requirements per se. There are standards, there are best practices, hopefully there are fair information practices that are conveyed to the consumers as to what the risks and protections are within each PHR. But in large measure it really is up to the PHR to decide how far it is going to go.
If you look around the industry, there are a lot of tethered PHRs, PHRs that are aligned with providers or provided by providers. I think you see some very big players in the industry that are establishing PHRs that are collecting data from providers, who have made it extremely clear that they are not HIPAA associates, they are not HIPAA covered entities, and the consumer needs to rely fully -- the consumer has to be able to read their information practices or policies and make a value judgment as to whether they will accept them.
But I think what we see in the industry is that there is far too much click-through. They want to get to the site. There are these ten pages or five pages of small type and they just whip through them real fast and say I Accept. The reality is, they don't.
So I think that is a huge issue, one that we have brought up in the past. There has to be a better more comprehensive, more appropriate way to put consumers on actual informed notice of how their data is going to be used. That also includes some of the things you said about the technical, what does the ISP do, what is the security that is in place. But it really does run the gamut.
By the way, some of these sites are designed to be open, so there is this notion in certain sites that you don't have an expectation of privacy. You are subscribing so that you can put your record out there. That may be perfectly acceptable. I am a big fan of this concept that as long as the consumer makes an informed decision, that informed decision may be that they are willing to agree to receive advertising, because there is this great site that gives them all sorts of information and allows them to do all sorts of neat things for free.
So as long as the consumer is allowed to agree and understands what they are agreeing to, I think you have to let these sites develop in a way that they think they want to.
MS. FRANCIS: You may be aware that Google Street recently was found to have been collecting information that was transmitted over unsecured home wireless networks, when it was going up and down streets. Google didn't know it was doing it. It stored that, so people communicating with their financial institutions, with their health care providers or whatever over their unsecured home networks.
Google didn't know it. This was a rogue programmer who had put that in the program. I would hope that a starting place for us -- because it is all over the map -- would be the governance question. If Google doesn't have somebody making sure, or some way to make sure, that Google Street isn't out there picking up everything that gets sent to you, that is a huge problem.
DR. SUAREZ: I think the other thing that we found during the hearings that in my mind was very valuable was, number one, the issue is not just about protection of the data while in transit, as in exchanges of health information systems or health information exchanges, but truly the expectation that the tools that we are going to be using in the industry, electronic health record systems, are going to have the functional capability to segregate and allow the user to handle appropriately the data.
So there is a need to see and to pursue that type of expectation, but the expectation is both at the EHR level as well -- the functional capability expectation will be both at the EHR level as well as the HIE level. But there are important differences there.
The other interesting part was that this is not just about consumers being able to control the data and decide whether data can be disclosed to another doctor for X purpose for payment purposes and operation purposes. This is not just about that. This is also, we found new dimensions to this, not new, but new in the sense of the importance of this, it is about also protecting the data or allowing the protection of the data from parents, to be seeing the data of adolescents, for example. So it is very different. Or in victims of domestic violence, allowing relatives and others to see the data.
So it is not just about the traditional way of thinking of disclosures and patients controlling the disclosure to peers or for other purposes, but it is a much more encompassing aspect of it.
DR. OVERHAGE: I'm sorry Leslie stepped out of the room. All the points she made about the Google issue are valid, of course. The wireless networks that were open doesn't mean the data was open. Much of those transactions were secured in other ways over that open wire.
The other thing though that becomes more important is the point you were making just a moment ago that I wrestle with. It is much like the mortgage crisis and things like that. How do we create that balance between personal responsibility? It is a very tough one, and it is a particularly tough one in the health care environment, where there are so many competing value propositions, time pressures, complexities and so on.
But I think it is important that we always keep that personal accountability issue on the table as we have these discussions. I agree completely. I do it all the time. I read through the quote-unquote eight-page click-through, and it is very difficult. But I think we ought to keep that balance.
MR. HOUSTON: I think that is the key. I'm not sure how we make it really and truly informed, but I think users do need to understand what they are signing up for. It is so hard, whether it be in a PHR context or even in a treatment context. Patients, what their expectations are, vary, and very often they situationally vary. So what is acceptable in one situation isn't in another and vice versa. Opposite situations come about because of an emerging circumstance, so your expectations will change. They don't want their information accessible, oh, but only in this context, which they never would have expressed at the time they provided their previous consent. So it is a difficult question.
MR. BLAIR: As I think most of you are aware, we have been building our health information exchange network and making rapid progress, not as far along as Indiana and a few others.
As we have done so, we have been very, very concerned about privacy and security. We have hired two certified security professionals to protect us on that piece. We have hired a privacy officer who has deep experience. We have been involved with a HSPC project, a DRSA project, we passed state laws. We have really taken privacy as a life or death issue for the existence of our health information exchange network. We have worked with the largest health care facilities in our state that have had very demanding privacy requirements.
So that is my preface. Privacy and security we view as life or death of the existence of our organization.
One of the things that I would like members of the Privacy Subcommittee to be aware of, I think many of you are, is that in our state, and we are not the only state, there are special protections for behavioral health and substance abuse. The thing about it is, there is no way that we have been able to find -- by the way, we have also called in people from Sandia to find out the security processes that they use for national defense. We have not been able to find a way to sequester or mask patient records. We don't see that it is in the near future to do so.
So the way we are handling that, because we do have some state laws that give special protections for certain conditions, we have to require, and we have done so, written patient consent for access to information over the health information exchange. We have had these discussions with ONC, because again, we are not the only state that has had this. We are active on the NHIN. We have right now, after having the Indian trial implementation projects, we were active in that, we also have the SSA contract, and that pilot has also begun right now, so we are pretty much involved in that.
The bottom line is, we can't share information outside the state unless somebody provides a written patient consent. With social security they send it electronically as an image, so we can do it with social security. Within the state we can go ahead and we can require written patient consent.
So my observation, because I listened to the Privacy Subcommittee, there were a couple of attempts during that meeting to say, let's recognize that there needs to be a balance. That work was rejected. I thought that was really unfortunate.
So I echo Marc Overhage's suggestion that balance is needed. I think someone else also mentioned balance. We are going down the path, but the bottom line is that whatever the most stringent constraints on privacy is the one we are following for everything, we can't parse it out.
So I just wanted to express that. Conceptually, sequestering and masking and dividing things up might be a good intellectual idea, but please check and verify that it is technically possible.
MR. HOUSTON: First of all, let me be very clear what we are trying to accomplish in this letter in September. We are not advocating sequestration. What we are trying to do is put in place an understanding of what types of information are sensitive and specifically in what context, and whether there are subsets of information within that broad category that really are sensitive and those that are not.
Really, the hope in my mind is to provide guidance to the HIE and others so that they can then take that information, look at their own state laws or other applicable laws and their own architecture and decide if and how the want to try to implement it.
So if an HIE says everything is going to have the same sensitivity to it, that is great. But I suspect what we are going to find is that as we develop the NHIN and develop the ability to pass information between HIEs and between states, that there needs to be an understanding of whether there are certain data elements that are more sensitive. Maybe there will need to be some type of sequestration, but that is not what we are advocating. We want to simply make sure that there is some understanding of data sensitivity as a utility for people then to use as they see as appropriate.
MR. BLAIR: I appreciate that. I hope that the report comes out with the caveat that you have just mentioned. The idea of the exercise you are going through has validity, but I think there should be some recognition in there that you understand that the possible consequence of that, which may be okay, is that at least for the near future, many health care facilities simply will have to go to the highest standard.
That may be fine. That is what we are doing, we are not complaining about it. We are not complaining about it. But the problem is that it means that people outside of our state will not have access to our patient data. So it is a national issue.
DR. MILLETT: Jeff, I am with you. In fact, in our subcommittee we discussed the difficulty in discussing a lot of the legal principles and laws and regulations to put in place the requirements for sensitive information. What we are trying to do is help to make them crisper, what is sensitive, how is it defined. We talked about the need for further clarity and assistance for the vendor community, because there is a huge disconnect between the complicated privacy conversations and what is available to people who are implementing, and the need to get there quicker.
MR. REYNOLDS: John will make a couple of quick comments, and then we will move on to Populations. As I travel around, the definition of deidentified is still incredibly misunderstood in the world, anybody you talk to. I guess the committee could look back at some of our secondary use stuff, some of our other stuff, working with the Department to help people continue to get that is key.
Then I think another thing that is going on dramatically in the health industry is outsourcing. It is becoming a multiplier of ten of whatever it was before. So a company may have a privacy official, but as people more and more outsource functionality.
MR. HOUSTON: ASPs are exploding.
MR. REYNOLDS: Not just ASPs. I am talking moving them.
MR. HOUSTON: ASPs are probably the biggest concern I have.
MR. REYNOLDS: So again, I think those are two subjects that could truly use a little bit of reminders. Deidentified, if you talk to ten different people, it still is ten different definitions. But they use the word to say I can do what I am going to do. So just take that as a comment.
Okay, Populations.
DR. STEINWACHS: We spent a good part of our time in Populations fixing the slides. We do report that the slides are fixed, I hope. We will get to assess that later.
One of the things that we did, Garland gave us an update on vital statistics and where the states are and NCHS on that. He said a few things. I thought it would be worth if you should share with the whole committee, because it was very good news about the progress that has been made and what looks like a very rosy future at this point, compared to where we were talking about a year ago.
MR. LAND: I had reported a year ago that there are some troubling things going on. The National Center was planning to only purchase what was called core data, which was a very small set of data that had been available nationally and previously. The new contract for the states was going to reduce available resources by about 20 percent. So there was real concern for what the future was for the national vital statistics system.
In the past year, there has been a series of meetings with representatives of my association and National Center, and major progress has been made, to the point that the previous plans, that contract isn't going to be developed. The standard 2003 data items will be collected. A process has been put in place to assess the states that are having problems.
Typically what has happened in the past is, a single state holds up the whole national data set. That is why there has been tremendous delays in the Center being able to publish their data. So we have developed a process where the National Center and our association will be providing technical support to the states to assist them in getting through whatever problems they might have.
In the President's budget, it was mentioned yesterday, there was money for the Center to provide funding to states who don't have electronic birth and death systems. So that would complete the few remaining states that don't have the current data set. That is the first time the National Center has had those kind of resources to provide to the states.
So a new contract is being developed right now for implementation in January 2011. We are very satisfied that we are taking a new look at how to improve the system for both the timeliness and the quality of the data. What I mentioned earlier today about releasing data on a quarterly basis is one other indicator of something we are promoting and supporting.
So, some good news.
DR. STEINWACHS: I don't know if there are any questions for Garland? Otherwise I will go on.
We spent our time on discussion of the future agenda. In the slides we have a very high level view. We were struggling a little bit with how to get down to what the priority specifics are. We had agreed that we would have a conference call in early July, maybe another one in August, with the strategy in mind that we might try to come up with a list of specifics that we see as attractive next steps, and maybe a few more than what we think we could deal with to bring into the Executive Subcommittee retreat in September, and look for synergism between what we are doing and what other committees are doing.
Part of that is the recognition that every member of the Populations Subcommittee is also on some other committee. Two, most of the things that we started talking about seemed to be cross-cutting issues. It made sense to try and think about how to design that next step agenda in that way.
There is certainly a lot of interest in element three. I think from now on we should just refer to it as element three. This is to protect the content of what we are doing, right? In part, not only thinking about learning health care systems, but thinking about learning public health systems, which ties very much to one of the things in our slides about the IT infrastructure for public health, as well as thinking about the utilities and applications that can extend it.
The indicator warehouse discussion that Linda just gave us, sounds like exciting frontiers. We are beginning to talk about utilities and access to data for public health purposes. That may be one of the things that we may want to put on that agenda.
Let me just open it up to any other committee members that might want to add something. I have exhausted my notes at this point.
MR. REYNOLDS: I really want to thank you guys for your leadership for the whole event this afternoon. Everybody playing off of that document and being able to use it as a stepping off point for the future. I thought you guys did a wonderful job pulling that together, and having gone through it and presenting it. I think it really is going to set a stage for populations not being a word, but being something that turns into real activity in many places.
DR. CARR: I just wanted to add that I want to thank Bill for his role as co-chair of that subcommittee. Bill is stepping down and Larry Green is stepping up to be co-chair of Populations. So thank you to you for taking that role.
DR. STEINWACHS: You notice how I deftly as the old co-chair was able to get the young co-chair to take the lead on that Friday afternoon set of calls. We found the person on the subcommittee with the passion.
MR. REYNOLDS: That is a good thing to do.
DR. GREEN: I just thank Bill and Susan. When you say you guys did a good job pulling that together, I think we should be a little more precise.
MR. REYNOLDS: If you had listened to me yesterday, you guys always includes the staff when I say something, very precisely.
DR. GREEN: At our committee meeting, I think it was Don that assigned to Susan the attribute of extraordinary patience. I personally believe that to be a serious understatement.
MR. REYNOLDS: Judy.
DR. WARREN: Standards also spent some of their time refining slides for this afternoon. It was interesting, in that both Jeff and I started the slide set, and then Walter stepped in when he became co-chair. We thought we had it pretty well refined. But then as always, the committee works incredibly well asking us what we meant by certain words. We realized we had the wrong ones, so we edited. So we think we are going to be okay.
But then Justine commented that we had too many slides. So I said, we could come in under the number, but nobody would be able to read the font. So we did promise we would stay within our 15 minutes, so we are ready for this afternoon.
We spent the majority of our time talking about our hearings in July. As most of you know -- and we found out it is called ACA 2010, not PACA, the Affordability Care Act. In that act, NCVHS is mentioned about five different times on various tasks that we must do and the due dates by which that work must be finished. All of those things have to do with standards.
So our subcommittee is taking the lead in working on that. As Walter and I read through the actual legislation and then worked with Lorraine Doo, our staff person, we really felt that there was a lot of cross-cutting issues in that. So I had a chat with Marjorie to see whether or not we could invite at least one person from each of the other three subcommittees to be part of those hearings. I had mentioned that yesterday. So I am hoping that by the end of today, so I am hoping that by the end of today we have someone from Populations, someone from Privacy, and after hearing the earlier dialogue, I think privacy is going to be really important, and then someone from Quality.
Within our own committee, we have a lot of people that are serving on dual committees. So Walter and I would appreciate having the final set of names. We are putting together a set of briefing papers to let everybody know what is happening on the committee, ready for the hearings.
Justine has asked that we also send that out to the full committee. We are on a fast time line. We have to have a letter to the Secretary by September. So it may require some phone calls, at least the subcommittee and the Executive Subcommittee, so that we can get that letter to you in September and get it approved.
The things that we are going to be having hearings about are the development of a unique health plan identifier. This was originally talked about in HIPAA, it was once more mentioned in the ACA. Given the deadline of that, that is going to be the first thing.
The next thing is identifying operating rules. These are the business rules. We are still trying to get a clear hand on the definition of operating rules. We have to define operating rules for, Walter, eligibility and what is the other one?
DR. SUAREZ: Claims attachment.
DR. WARREN: Claims attachment. These two standards have the most work done on them, so it is fortunate that they are the first two that we have to have identified about, what are the operating rules for these and what will be the criteria for deeming the status of the organization that wants to write these rules and publish them. So it is a two-part thing.
There will be more operating rules that we have to do later on, but right now it is the two. There will also be a second letter in September about the operating rules.
We also had a very brief discussion about our own strategic planning. I think we got down to a laundry list and ran out of time, so there will be more work on that as we progress.
Walter, do you have any comments?
DR. SUAREZ: No, I don't.
MR. REYNOLDS: I know there were a lot of friendly wagers on the World Cup. I am putting one down that unless they both stand up there and talk together, they won't get their 15 minutes.
DR. WARREN: We will.
MR. REYNOLDS: No, just kidding. It is going to be an interesting time with the new bill that is out from the standards standpoint. Having been involved in it for so many years on the committee, I would recommend that, as we mentioned yesterday, those of you that think you are not part of Standards, it now reaches out in new and different ways, and it is doing things. So if you decide whether or not you think you are a standards person, everybody is going to be a standards person, because it is going to define an awful lot of things that are going on. So it is a great way to learn, a great way to help, and it is much needed, with as far reaching as some of these standards are going to be.
So it might not feel comfortable to you, but if you let it happen without all this representation, it will be very uncomfortable with you, and figure out how you play that.
Before I move on to Quality, I would like to note that Dr. Simon Cohn, our most immediate past chair, has joined us. He was a mentor to a lot of us. Welcome, Simon.
DR. CARR: We had a great discussion, great participation. I will note that there is substantial overlap between the Populations membership and the Quality membership. One of the things that we talked about is whether we work together with a single agenda, being cognizant of resource, time, bandwidth, and also the fact that we really do all need to understand what is going on in Standards and actively play a role there.
The conversation that we had yesterday I think put us in a great direction, and I can't thank Matt enough for putting this together. I will say that we worked on our slides too, and I am happy to say that I think they are done now.
With regard to our committee, one of the recommendations for the meaningful measurement hearing was related to identifying the core set of data to support quality measurement activities, a critical factor in supporting both quality measurement and 2013 meaningful use, and broader quality measurement capacity from EHR, is to assess the components of this core data set in relation to measurement priorities.
A key way to understand approaches and the impact of the recommendations to establish and require support of the core data set in EHR is to gain feedback from integrated and distributed health care organizations and groups that have taken this approach.
What that means is, we sat together. On one side of the room was Mark Hornbrook from Kaiser and then Marc Overhage from Indiana, both very mature programs, both very different. I think they represent an array of elite programs that have done all of the infrastructure on EHR and have learned a lot, and have a lot to say here.
One of the thoughts was to hold a hearing for these elite mature programs and ask them, now that you have this all in place, what got better and why did it get better, and what did you need to learn or do over along the way to get to where you are.
So I look to subcommittee members to elaborate on that in any --
MR. SCANLON: I think one of the aspects of looking at both organizations was the idea of comprehensiveness of the data that they have. Part of the recommendation in our December letter about a core data set was to build on the idea that you do need a range of elements in order to be able to construct quality measures reliably and validly.
The current paradigm, which is, every EHR is going to be able to produce quality measures, is potentially significantly flawed, because if an EHR and a single provider is missing key information that could be used or would have relevance for that measure, then we are getting distorted measures. So we have to think about how do we overcome that. I'm sure both Marks have examples of how you miss the point if you limit yourself to a narrow set of information that just may happen to be available, not that the other information was ever there, because that is not the nature of EHRs. EHRs were not meant to be comprehensive assessments of your lifetime health. They are the record of encounters with the health care system.
DR. CARR: I have to say, now that I have just redone our whole presentation, it all does tie together. If you remember, in 2004, sa we talked about yesterday we had 23 candidate recommendations, and a lot has happened, so I put that into the presentation. But that was all about the building blocks that we need. What we are doing today is talking about how we use those building blocks, how we put them together in measures and how we improve health care. So I see a great storyline finally out of this. We are now taking it and putting it together, and what can we learn.
Then the key questions, and even tying into the presentation we heard today, this whole issue of data integrity, what is there, not integrity in terms of honesty, but the completeness of it, when you have fractured data sets and you don't know it. So I think that goes a little bit with the community data set thoughts that we heard about today. Yet we know that there is great power in that.
So as we think about these mature programs and think about for everybody who is now investing so much in their EHR, where do they start to begin to harvest some of the benefits of this and where do they need to build. So I guess we will be having a call as well; maybe we will all be having the same call together to work on this.
Walter?
DR. SUAREZ: I just wanted to point out, there is also work being done by the Health IT Standards Committee, the Clinical Quality Work Group. In fact, we are meeting tomorrow afternoon to review the results of a preliminary informal survey done with a number of health care systems on quality and performance measures that could be a road map into meaningful use for 2013.
There is a lot of interest now in identifying quality measures that have some impact from and repercussions on health IT, so that meaning that they are significantly able to be leveraged through health IT and that they also are able to show or document how health IT helps improve the outcome issues.
So a lot of work being done at that level with the Health IT Standards Committee and the Clinical Quality Work Group.
DR. CARR: What I have talked about as I have spoken with almost everybody on the committee leading up to this, is these parallel universes that are going on on the same topic, and how important it is that we have a landscape of what are the activities, who is in charge, to whom are they reporting, and where are the gaps and where are the redundancies.
We talked in Standards about collaborating with the HIT Standards Committee, to almost come together and say this is the piece I am going to be doing, and you are welcome to participate and this is what we are doing, and welcome your participation. So I think we have got the start of a couple of landscapes underway in privacy and standards; we need it in quality and populations now even with the element three. So I think that is a very good point.
DR. SUAREZ: The importance of cross communication; I think there is going to be plenty of topics and areas and priorities that each of the various FACA committees are going t o be dealing with. So there are going to be places where our committee here clearly is going to have the core responsibility, and then there is going to be areas where the HIT Standards Committee will have that type of responsibility. That way we don't duplicate.
But I think there is also going to be areas where it will be beneficial to have joint activities more and more. In the case of hearings, for example, where the information from the hearing will benefit the three FACA committees. But I think it is going to be beneficial to look at more and more coordination in that area.
MR. QUINN: I am Matt Quinn from AHRQ, staff to the Quality Subcommittee. Just to frame this a little bit, we had three recommendations for the meaningful measures hearing. One was that there be a national coordinator for quality. Second is that we should start with a core data set which is open, public, well specified, so that it can be implemented, and that that should serve as the core for our measurement activities for both meaningful use and more broadly. Then third, a way to get this implemented is to have it as a certification requirement for systems. Not that that is the only data model, but that commercial systems that volunteer to be certified can support that model.
What we see in the current meaningful use talk is mandating a handful of measures which will then be hard coded into systems in support of the 2011 requirements. What this presents the opportunity to do, as opposed to starting early on hard coding the next measures for 2013 and the next five or 15, is to say here is a denominator of data elements from which we can pick and pull a variety of measures. The question is balancing how big that is, how small it is, based on where we want to go with it and what we can support.
We have some examples of organizations taking that step of saying we have gotten a standard model, standard data elements across organizations to do this, and in many cases it is not nirvana, it is a rough path. So just to frame it a little bit.
DR. WARREN: Based on your work on the quality models, there is some work going on in the VA. Right now they are working on falls, what is the model for data that you need to track falls that are outcomes, and then taking that, modeling it to HL-7's RIM so that we insure interoperability, and then encoding that in both SNOMED and LOINC.
One of the things that we have been doing with Betsy Humphreys at the National Library of Medicine is trying to create a library of encoded indicators so that each institution doesn't have to do their own encoding. Just go there, pull it out of the UMLS and be ready to run with it. That way it is all ready to be translated or transferred or aggregated up in whatever way you want to take a look at it.
So that group you might want to touch bases with. I can give you name and e-mail.
MR. REYNOLDS: With that, at 11:00 we are supposed to be -- right on time -- turning it over to let Justine handle the plans for September and future meetings, and then I'll wrap up.
Agenda Item: Plans for September 2010 and Future Meetings
DR. CARR: I never cease to be amazed by the richness of this committee and the shared learning. One of the things that I enjoyed a lot about the last two days is the opportunity to engage in dialogue and have enough time to share ideas. We have been doing more of that in recent years, and I think that we need to always create the time to do that.
A couple of themes came out of this for me. One is that we have a lot of work currently with 14 members. Don't feel guilty or anything, Harry, but we are down to 14. So we have to be very thoughtful about how we prioritize our work. We also have to all share in it.
I think the work that we are assigned on standards has to be the work of everyone. We all have to be up to speed on it, we all have to be reading it and thinking about it with our perspective, whatever our subcommittees are, and then coming back and putting out whatever your thoughts are.
The time line is very short. We have got to have a letter in September. The background materials are coming together in the next week, and we will distribute them. The hearings are in July 19, 20, 21, so we need to think about whoever will come up with Judy's request for representation from each subcommittee. But we need to be in conversations.
I think we had a great example of that, where we missed our February meeting and yet, look at the wonderful report-out that we will be giving today; we did it with phone calls and so on. I think we are going to have to be prepared to do that as well. So I would say that the work of Standards is the work of the full committee, and we will be on a sprint. It is going to be a lot of work but if we all work on it together and kick the tires on everything that we hear, push back on everything that we are trying to say, because it has got to be our best, best work, and we need everybody's perspective. Even if it turns out not to be the right thing, just get it out there.
That is issue number one. I see Standards as work number one. Number two, what we just talked about, is that each of the subcommittees will put together a landscape of who are the other players in the particular area, privacy, populations, quality and standards, and what are they doing. Then we use that going forward so that we are checking on a regular basis with what the other committees are doing. As Walter brought up with standards, that we reach out and have a very specific conversation and collaboration where appropriate.
Then the third thing, I know we talked about it in quality and populations since we were one and the same, is, we have this big agenda, and we are all carrying a lot more of the work, that we think about that Populations and Quality work together on a particular agenda going forward.
So those are the overarching thoughts that I had coming out of today. In September 16 we will have a half day Executive Subcommittee retreat to talk more about this and map out how we see ourselves, not just in the near term, but the next two years. Then we will have a follow-up on that in November, a continuation of that Executive Subcommittee retreat.
DR. SUAREZ: Is that September 16 now?
DR. CARR: Are we set for the 16th?
MS. GREENBERG: The full committee is meeting September 15 and 16, and then that would be the --
DR. SUAREZ: It would be the 14th or the 17th. It is going to be the afternoon of the 16th. We will meet until noon as the full committee, and then the Executive Subcommittee will have that afternoon, the full afternoon.
Then our last meeting of the calendar year is December 1-2, so we were talking about November 30 for a full day. I think you said the Health IT Standards Committee was meeting that day. So Walter is on both of those.
DR. CARR: I think for now we are going to have to stick with November 30. I think we need some framing before the full committee to be able to report out where we are headed.
MS. GREENBERG: I raised the question of whether there was any possibility for a joint session, an hour or two, with the Standards Committee on that date. I don't know whether that is something --
DR. SUAREZ: The agenda for the Standards Committee doesn't get set until much later, so we don't know what that is going to be.
MS. GREENBERG: Maybe in your capacity as being on both you could suggest that. We are not sure where we are even meeting right now, and I don't know where they are meeting. It is all going to be in the Washington, D.C. area. I don't know whether you might be able to join us by phone, be in two places at once. I know how much fun that is.
DR. CARR: I think way prior to November 30 you would begin a conversation with that committee of this idea that we brought forward today, so that by November 30, if we came together, it would be because we had already gotten an idea of what we wanted to do.
MS. GREENBERG: Regarding the landscape, we know there are a lot of people in the privacy and security and standards space, quality. The NCHS DFC has had a bit of a hiatus in getting new members, new chair and everything. They seem to be up and going again. When is their meeting?
PARTICIPANT: September 23-24.
MS. GREENBERG: So it is right after our meeting. So I think we will have to make sure we have our liaisons in place there as well on the population side.
MR. LAND: Marjorie, could you clarify the dates?
MS. GREENBERG: The agenda is the dates that we had had. Originally we had the November 17-18 dates, but those represented some conflicts. So we rescheduled that meeting and we did Google everybody, to December 1-2. But I apologize that this still said November 17-18.
So the meetings the rest of this year are September 15-16 and December 1-2. Those are day and a half meetings. The afternoon of September 16 is an initial retreat of the Executive Subcommittee and a full day on November 30 for the Executive Subcommittee.
MR. HOUSTON: In September is anything going on? Are there any subcommittees meeting on the 14th?
MS. GREENBERG: Were any subcommittees planning to meet on the 14th of September? I know Privacy had thought --
DR. CARR: I think what we would like to do is check with Quality and Populations to see whether we would be ready to meet then.
(Discussion off the record regarding future meeting dates.)
DR. CARR: The plans are set both with the hearing, the landscape and the communication with the FACA. Quality and Populations will perhaps even decide today about whether that hearing will occur on September 14. We will set up a call to get that going. And Privacy is going to have a letter by September.
MR. HOUSTON: Yes, we would like to have that letter available for review in August. If we need to have a conference call to discuss the letter we will do that in August as well.
DR. CARR: I wonder if it would be helpful, with the idea of keeping the whole committee up to speed, to have a background document, why is this letter important, what are the things we are trying to address, what did we hear, what did we learn, what are we deciding. That way we will all be up to speed.
MR. HOUSTON: We can try to do that, or maybe on the surface make sure the letter is clear enough. We will try to give ample opportunity for input and review in the August time frame. I think that is reasonable.
DR. CARR: And you are doing your landscape both on governance in terms of who is in charge of privacy from the micro to the macro level, as well as for the agencies.
MR. HOUSTON: Yes, that is in September.
DR. CARR: Anything else? I think we have a busy summer.
MS. GREENBERG: Also, if you want to have any presentations to the full committee in September, we need to start working on those. Being a transition meeting and follow-up to our paper and to our symposium, et cetera, I would think there would be a meeting in which you don't have a lot of time for committee discussion. And of course we will be needing to discuss the privacy letter --
DR. CARR: We will have two letters.
MS. GREENBERG: -- and the standards letter. You will have a letter on the operating rules and another letter on the plan. So at this point it might be that we not think about having any outside presentations.
DR. CARR: Maybe one or something like that.
MS. GREENBERG: Maybe one at most.
DR. CARR: We will have an update on meaningful use at that point as well, hopefully, where we are with the final.
MS. GREENBERG: From Chuck and Karen and Jim, I would think we would have those.
MS. JACKSON: We were looking at follow-up from this meeting as well, but you have not seen each other's PowerPoints. You will see them today for the first time. We wanted at one point to have the menu folders to have everyone see everything. We realized that was a bit much. But at the next meeting would be an opportune time, particularly considering that the Executive Subcommittee would be meeting directly afterwards, to keep the synergy going, the flow of all of the work, seeing how much has coalesced, with the presentations we had yesterday.
This is a lot that is happening that we can get our hands around at the next meeting. Maybe have one presentation like what happened with this time. It was very strategic. We had a whole new way of organizing the subcommittee sections yesterday in comparison to other meetings. So things like that I think will work for September.
MR. REYNOLDS: In closing. It was kind of fun to sit here and have Ron as one bookend and Simon, our most recent mentor, on the other end.
One thing I would say. I hear a lot of voices in my head as I go out. Make sure as a committee -- we have been around for 60 years. We have been relevant for a long time. We will be relevant for a long, long time. Sometimes it is easy when there are other committees and other things that are going on right now that look like the limelight might be there, the action might be there, the relativity might be there. This is a long game with a lot of turnoffs, with a lot of rest stops, with a lot of other things going on.
So be careful that the committee doesn't stay out front, because out in front in this environment, two years, three years, five years. We talked about the hearings for 2015 meaningful use, starting the meaningful measures. Setting the plate so that others can pick it up and talk about how to implement it and what it means has been a real sweet spot as a committee, whether it was under Ron's tutelage or Simon's or John's or anybody else's. I think it will be the same for you. So make sure that you keep that in mind.
Having just gone through it, I have gone through the ONC ramp-up. There are times when you are sitting and thinking about going, are we really doing okay, and we continue to do okay. We have got a great team, play that way, play hard.
Jeffrey, I salute you.
I am going to adjourn this and turn it over to Justine. Thank you very much.
DR. CARR: We're done.
(Whereupon, the meeting was adjourned.)