[This Transcript is Unedited]
National Academies of Science
Keck Center
500 Fifth Street, N.W.
Washington, D.C.
MR. REYNOLDS: Good afternoon. I'm sure there will be other people coming in and out as we proceed.
Before I get going, I would like to have all the current members of the Committee and the past members of the Committee stand up, minus the chairs, we'll get to you later. Thanks to all of you immensely, and also the staff and their support groups that have helped us. That is an awful lot of people in this room, so please stand up so everybody can see you.
Nothing could be more apropos than, nobody claps for the Committee, but anybody near the Committee knows who is really important. So that is exactly as it should have been. Thanks for orchestrating that without any notes. That is exactly how the world should be run, right there. Well done.
My name is Harry Reynolds. I am the current Chair, and when you get finished listening to me today, I'll be the past Chair of NCVHS, and I will be introducing the new Chair at the very end of this.
It really is ironic to be celebrating the 60-year history of NCVHS at a time when daily there are significant and relevant announcements or actions that influence or are influenced by the work of this Committee. Most of you in this room literally are touching today's activities, by the fact that you planned previously, are planning now, or we have plans in the future.
What an exciting time to be devoting one's energy and professional capital to this Committee's work. It sounds like maybe a preacher or something, but those of us who have been involved in this, you truly are. NCVHS is the ultimate opportunity to join a 60-year relay race, with professionals that are at the top of their license and collectively dramatically better than any of us imagined we could be a part of something.
We former or current NCVHS members and staff and their energy, commitment and willingness to contribute is clear and consistent in an ever-surprising way. The energy from the past chairs alone -- and I have had a chance to spend time with them -- is invigorating, no matter what yesterday was or your tomorrow is going to be. It was an invigorating opportunity, and the same thing with people.
Opportunities come and go, but an NCVHS tenure keeps on affording that sense of accomplishment. I know that from anybody I ever meet that has been anywhere near, including staff and others. That is what most people feel.
So welcome to the celebration of the human spirit, directed at relevant subjects in an open and collaborative way for 60 memorable years. Thank you to those who carried the baton this far, and best wishes to those that are carrying it forward. NCVHS is an institution, we are its caretakers, and we includes members, staffs and all the testifiers that supply us information.
Now what I would like to do is, I would like to introduce Dr. William Eddy from the Committee on National Statistics to continue the welcome. Dr. Eddy.
DR. EDDY: Hi, I'm Bill Eddy. Nobody calls me Doctor. On behalf of the Committee on National Statistics, we are really delighted that you are here. You celebrated your 50th anniversary meeting here at the Academy back at the old building, which unfortunately is closed now for renovations, so for the next couple of years we don't get to use that building while they change it into a modern building. I was told that there are pictures of the leadership of your committee by the statue of Einstein outside that other building. I hope that this meeting is as memorable as that occasion must have been.
I want to briefly tell you about the Committee on National Statistics here at the Academy. It is a permanent committee of the Academy. It was created in 1972 as the result of a Presidential commission. Its purpose is to improve statistical methods and information on which public policy decisions are based. The committee carries out studies, workshops and various other activities to foster better measures and fuller understanding of the economy, the environment, public health, crime, education, immigration, poverty, welfare and other public policy issues. It evaluates ongoing statistical programs and advises on statistical policy and coordinates activities of a highly decentralized federal statistical system.
Our work is supported by a consortium of federal statistical agencies through a grant from the National Science Foundation.
Over the years, CNSTAT has undertaken studies related to the portfolio of NCVHS, including a series of studies on confidentiality and data access issues for surveys and administrative records data. The latest report in this series will be released within the next week. It deals with data collection, storage, confidentiality and access issues for biospecimens, and was commissioned by the National Institute on Aging.
CNSTAT has also studied such key health data sets as the NCVHS provider surveys and the vital statistics program of NCVHS in the states. This very same day in another room in this building, we are running a workshop on data sources for monitoring adequacy of children's health insurance coverage.
In its work, CNSTAT has turned to and values the reports and minutes of your meetings. The NCVHS plays a vital role in advising HHS about fundamental issues of data standards, quality, confidentiality and access, which will be even more important during the implementation of health care reform, and hopefully what will be major steps forward for a cost effective health care system for the nation.
I welcome you all. I hope this is a really great meeting. Thank you.
MR. REYNOLDS: Next I would like to introduce Dr. Ed Sondik. Dr. Sondik is the Director of the National Center for Health Statistics, but more importantly, a dear and consistent friend to the Committee. Ed, we really appreciate your support and the support of your organization. You guys have been nothing but a plus.
Agenda Item: Reflections and Challenges
DR. SONDIK: Thank you very much. It is quite a day. I went over the 50th anniversary volume. I don't know how many of you have looked at that, but that is really something, to go back over that and look at the history of this Committee.
You said that NCVHS is a friend of the Committee. Actually the Committee is in a sense the father or midwife, or I'm not sure exactly what the relationship is, to the National Center. I think you all know.
We are celebrating this year our 50th anniversary. It is always hard to pinpoint the exact date, but this is the 50th year that we were transformed from one thing or another into the National Center for Health Statistics. Our now biannual meeting, this year we are making it broader than it has been in the past, it is called the National Conference on Health Statistics, will be held at the Shoreham August 16-18. The 16th is very much a hands-on day with the emphasis on enabling people to get their hands on the data, understand how to use it and so forth, and then the talks on the 17th and 18th are broader than the Center, building more on the uses of the data and the challenges in the data and in the data collection. So I encourage you all to come. The admission price is zero, so take advantage of it, please do.
I just thought I would give some reflection and a bit on the challenges. I see this meeting as about the challenges. I think that is terrific. But I also think that to understand where to go with the challenges, it is important to reflect a bit on how the Committee got to be here.
If you go over that history, and I will take some license with it, the Committee has morphed, not even evolved, it has been on one form and stayed that way for the first 15 years. The first 15 years were very much technical years as I read it, focused on the ICD and the visions to the ICD.
Then it morphed into looking more at some of the things it had helped create, like for example the health surveys, the health care surveys and the supportive vital statistics. It has moved through time.
Who would have thought in 1949 -- of course, no one would have thought about HIPAA. No one would really have thought about the dissemination of health information. In fact, there are very few people in this room who can remember 1949, and I won't have everybody stand up who can remember it. I have some memories, believe it or not, you probably do believe it, I have some memories of it. It is trite to say, but it was a long time ago.
Not very many years after that, when I started getting into health and analysis and the operations research uses of health data, the health data enterprise was in a very primitive stage compared to where it is today.
The Committee has, as you pointed out, really made an impact. It seems to have always been right ahead of the challenges, so it wasn't doing cleanup, it was doing preparation. That was certainly true of the ICD, it was true to health care surveys. It was even true as late as developing the vision for health statistics for the 21st century, in which it really was ahead. That is an area where I think we do need more work. In fact, I think that is one of the challenges that we have, which is the organization of this enterprise. I will say a little bit more about that.
I wanted to just highlight some of the accomplishments over time. One has been -- and I think it continues to be a push, but it has been an accomplishment which is the focus on population health. In part, the Committee, I view, began there. But yet, it really was focused more on the technical side. It was only later that it started looking at health as more than health data. Do we know population health? What information do we need to improve population health? I think that continuing theme is particularly important.
The morphing of the Committee was very, very evident as it dealt with HIPAA. It was certainly not a technical committee, at least the way I see it, but it was a link between the Secretary and the Department and the public. It was a vital link. If the Committee didn't exist -- I think Marjorie and I once had this discussion -- it would have had to have been created in order to have that link, because it was clear that it was necessary.
The Committee has been early on in electronic health records. This is going to change what we do in the National Center for Health Statistics. Exactly how to me is not clear, given there are major issues that are yet to be understood about quality, about how we use the data, issues related to representativeness and so forth. But again, the Committee is on top of that.
Fundamental to the Committee and to health data is classification or classification systems. Frankly, that has never been something that has completely turned me on, but where would we be without it? I understand the need, but I don't think my attention span is long enough to have stayed with ICD-10 for example as long as it has taken. But it is crucial. NCHS' role led by Marjorie in this area has made a very, very important contribution to North America, since we lead the WHO collaborating center, but also to the world, for that matter.
Issues related to privacy and security that the Committee is dealing with. I left my report on the chair, but it is critically important. I want to say a few words about that in a second. And something that I view as linked with population health, which is addressing disparities, measuring disparities, and understanding how to get the data to help us to address these disparities, is something the Committee has dealt with. So I think the Committee is clearly to be congratulated for this.
It raises the question that was raised ten years ago and I think could be raised again today: What is it about this Committee that has enabled it to be there ahead of the wave, so to speak, to see the issues as they are coming down?
I think there are two elements to that. One clearly has been the members of the Committee. I think we have had a stellar group. In the 15 years or so that I have focused on the Committee, it has been a stellar set of intellects and experiences that have been brought to the Committee.
The other is the staff. I think the staff has been stimulated by the Committee, and maybe, I hope, that the Committee has been stimulated by the staff, to continue to address these important issues.
This is James Brown. He was called the hardest working guy in show business. This is without a doubt the hardest working FACA committee that I have seen. It goes on almost without complaint, almost without complaint. Not that you have complained. I mean that it is really incredible, the amount of work that this Committee does in a year. The other advisory committees that I know meet less frequently and do not have the rigorous schedule that this Committee has.
Let me just talk a bit about some challenges which I think relate to the concept paper that is going to be discussed. These are challenges more from an NCHS point of view.
First, there is the challenge of every year deciding what information we should collect. As Bill said, there is a committee meeting on children's health insurance. Clearly what comes from that committee is going to relate to us. These are the questions that we face not just once a year, but continually throughout the year, how should we modify the tools that we have, and/or should we develop new tools, and how do we do it all within a defined set of resources.
How do we take account of the other information that is being collected and the quality of that information? It is a significant challenge. The guidance that we get from this Committee and the guidance that we also get from our Board of Scientific Counselors, the guidance we get from around the Department and outside is all crucial.
I think we could do a better job on the organization of that guidance. But even as I say that, I think that is more wishful thinking on my part. I think this is an organic thing, and it changes and morphs over time.
The second challenge for us -- just one other element in that. One major gap we have in the data that we collect is that we have very minimal longitudinal data. So while we have, I think one could argue, very good point in time information on the state of health care at any point in time, or on the vital statistics in a given period of time, what we don't have is very good information on the person state, I won't even say patient state, but on the state of us and how we evolve over time.
There are some longitudinal surveys, but I don't think they meet the needs that we really have. I should emphasize, one of the things we do is, we do have rudimentary -- we transform our point in time surveys into rudimentary longitudinal surveys because we link them to the mortality data, which is very, very important and not used to the extent that it really should be.
But in order for us to understand health and how it changes, we need to understand what happens over time. For those of you who remember the diagram in the front of the vision report, which shows all of the various influences on health, we need to understand how those influences change the health state and the trajectory of the health state over time.
Dissemination is a considerable challenge. But I can't talk about dissemination without talking about confidentiality, privacy and confidentiality.
In the past, and in my own thinking probably until about a year ago, or until I started going to meetings, which is about a year ago, on Data.gov, I really thought that what we did on disclosure review was terrific. We have a team that reviews everything before we put it up on the Web, before we create a public use data set. We have technical advances, where people can access the confidential data in a way in which confidentiality will not be violated. Not all that many people can do it at any point in time, and it is not all that easy to do. It is limited, to a degree.
But I thought the disclosure review that we did was really terrific. Then Data.gov came in. Data.gov is an outgrowth as you know of the President's open gov initiative. The idea behind it is very simple. As one of the high officials in HHS said the other day in a meeting related to this, all that data was stored in these big black volumes and locked away someplace in a safe, and now we want to liberate it.
I don't think that is exactly true, of course, to say the least. It wasn't locked away. But the fact of the matter is that it wasn't all that easy to get to. Data.gov has made access to or knowledge about this data, because the access has been there, knowledge of it is now more widespread. There are more and more people who will without a doubt begin using this data. At the same time there are more and more collateral, if I can use that term, data sources.
We have something that I learned. My knowledge, my education was sorely lacking, but a year ago I learned about the mosaic effect. The mosaic effect is something they worry about in national security, where information goes out that has been completely laundered, but it turns out that data, let's call that A, relates to something called B, which relates to something called C. It turns out when you put A, B, C and a D together, you can identify troop movements, or you can identify where the fuel depots are.
I'm not making that up. This was told to me by one of my Data.gov colleagues in the national security area. It really is a source of concern for all of us who are concerned about data, because it means that the likelihood, in fact, the probability of a disclosure goes from very, very small to something larger. I feel that we don't even know how to describe that probability at this point.
So the challenge that I feel that in NCHS we are most concerned about has to do with privacy and confidentiality. Disclosures will certainly hurt our credibility.
Lastly as a challenge for us, it is the coordination of all of these data sources and the dissemination. We recently launched -- I should say, the Department recently launched with our support called the Community Health Data Initiative. The goal is to take these data out of the black volumes in the safe, stored underneath Don Dettmer's house, University of Virginia, -- they used to have it in one of those resorts, but they learned about it -- and take that data and move it from the national level to the community level, not the state or the local, but the community level, and bring people together who create computer applications with those who understand and know the data, and then make these applications available to the public at large, and then see what happens. It is kind of like letting the genie out of the bottle.
I think the coordination and the evaluation of all of this is going to be a significant challenge. At the same time, I think the best purification for this is sunshine, but we have to let it out there. There will be organizations that will spring up that will evaluate these applications, just as we have when we go out to buy something.
I think buying something is one thing. When we are dealing with the public's health, I think it is a more sacred trust than that. I think this is going to be a challenge for all of us.
I think the Committee is up to it. I wonder what this is going to look like in 120 years, but for that matter, I wonder what it is going to look like in 20 years. It has been about every ten or 15 years or so that the Committee has changed. What has persisted is this ability to look ahead, understand what the challenges are, and bring the expertise together to advise the nation on its direction.
I thank you for inviting me. My best to the Committee on this anniversary.
Agenda Item: Toward Enhanced Information Capacities for Health: NCVHS Concept Paper
MR. REYNOLDS: Most of you when you go to a party you don't have to work. But all of you have been associated with NCVHS, so welcome to the meeting. All of you know Marjorie and Debby and Jim. You don't think we came to a party here, do you?
One thing good, we don't have to ask you whether you have any conflicts. You are not going to get to say anything.
As part of this preparation, any time you have something big coming up, it is good to focus on what you ought to think about and how you ought to look at things. So the 60th anniversary, we want to take a look at a concept paper. For those of you that have been involved in it, you don't usually see us doing concept papers. If you do a paper and you haven't had a chance to completely vet it, you would call it a concept paper. We might be slow, but we are not stupid. Since we are a very public organization, no way, who we are going to hang out there.
So we have prepared this document. We have gone through it as a group. You are going to hear after I have finished representatives from each of the subcommittees, is going to get up and tell you a little bit about we are going to do about it. I am just going to take you more or less through the structure of the document. There is a copy of it out there.
Even today, what was interesting as we were going through some of our presentations today, even the new challenges that are coming up in information just keep jumping out at you as to what you have to do. So a lot of you that are sitting here go, we worked on information when we were here. It is changing, it is morphing, and we are going to deal with it.
So what an exciting time. As I said earlier, it is an amazing time to be in this industry, to see what is going on, and on the other hand trying to change it. Lots of legislation, unprecedented opportunity. The future really does depend on that information.
As we get more and more into it, it is easy to generate information. These are the front lines of care, not just captured later but used in front lines as a step. Easy to reuse, manipulate in a good way and link it. That came up even today from Ron, as one of our former co-chairs, who stood up and said, have you guys figured out linkage yet. He was wrestling with that in 1986. I can comfortably say that the linkages in 1986 are multiplied significantly now. So we didn't have linkage figured out in '86; we are struggling to do the same thing.
Secure and private. If you have followed NCVHS at all, we have tried to focus on this stewardship philosophy. It is not just privacy, it is not just security, it is the stewardship idea of truly taking care of the information, and then generate it from new and existing sources as you go about it.
The health information capacity in the public sector has led most of the information efforts for years. HIPAA marked a renewed emphasis on health information. ARRA elevated the focus again, and obviously NCVHS supports and will continue to promote that.
As we look at the kinds of purposes -- this is a significant list, and I will let you look down it, but when you start taking these now, and you look at all the capabilities out there, if you say care coordination and then you think of EHRs and health information exchanges and the NHIN care coordination, it takes on a whole different meaning than it might have prior to those. Care coordination is pretty much whether the caregivers were working together; now this is whether the information is there. So simple words take on dramatically different meanings as we go through this ebb and tide of what we are dealing with.
Then building patient trust. If you look at any of the surveys of do patients truly trust their physician, they trust their pharmacists. But in a lot of speeches around the country, I ask how many of you use the Internet for banking and for other things, and it is almost unanimous, and you get about five percent of the hands that want their information on the Internet, their health information, so we have got to get that patient trust to where they understand that.
Patient safety, the health insurance operations, elimination of disparities. The Committee has done a lot of work on that in the past. Then clinical research which is more and more important as we look at new and different things to do.
So the key goals are accessibility and availability of the information. One of the terms we are coming out with in this concept is that it really is an integration between public health and health care. One of the things that Garland Land brought up today for example is the availability of some of this population health every quarter now. Not waiting two years to get it, not waiting three years to get it; get it every quarter and have it more real time and usable. So we are much closer to when it actually happens.
The third bullet down is increasing information on environment, housing, education, nutrition, economic and other influences. We heard today a presentation about inhalers that are being used for asthmatics that have a GPS on them. Every time the person uses it, GPS knows where it was so that they can study a city and find out where the places are in the city that may truly affect the asthmatics. That is new and different. That has also got every subject that I talked about, privacy, security, who is watching who, what is going on comes to bear.
So as we take care and we take technology and we combine them, we create new, exciting, different and many new assignments for the Committee to deal with.
Standardization. If you look at the new health reform bill, NCVHS is prominent in the discussion about standards, and in there on a regular basis as we do things. You will hear a little more from Judy Warren on that.
Back on that previous one, things like meaningful use. The Committee has already held the first hearing on meaningful measures for 2015. We held the first hearings for meaningful measure. ONC has taken the lead, and now we have had some discussions about what 2015 might look like. So staying current, working on the current things, and then staying somewhat in the future.
Privacy, confidentiality and security. I am going to break this into two pieces, one, the required dependencies for primary and secondary uses. We have done a lot of work on that. We did a lot on that with Simon when he was chair. Meeting personal expectations of trust, the fact that data is used in many new and different ways on a continuous basis, what are we doing there.
As we look forward, the path is clear. The legislation has opened that. More and more, as we discussed yesterday and in the hearings that are going to be in July 19, 20 and 21. As soon as the hearings are over, a document will be prepared by NCVHS, and then an interim final rule can be put out by the Department, which moves the process dramatically faster. Some of the things that are already in the bill are going to be implemented in 2012.
The Committee wrote the first letter on ICD-10 in 2003. It is going to be implemented in 2015. The bill passed in March, has to be a hearing in July, has to be a decision for things to be implemented in 2012. Different game, different environment, a much different approach.
Federal leadership is necessary. New approaches have to be explored. Research demonstrations and investments are important, and obviously data resources are a must.
In conclusion, and then we will have the individual groups come up and tell you a little bit about, if we have a concept how do they turn it into reality in the subcommittees.
Opportunities abound to make a real difference. Health information is prominent in the future enhancement of health care and health. We are prepared, enthusiastic. We enter our next 60 years assisting HHS to make a better U.S. health system and improve our overall population health. Again, a concept paper put together in a structure. I would really like to thank the Committee for doing that briskly in a changing environment.
Now I would like to introduce -- and I will just mention them all, and they can come up in sequence.
For Standards, Judy Warren is going to come up. For Privacy, Confidentiality and Security it will be John Houston. Population Health will be Don Steinwachs, and Quality will be the new Chair of NCVHS, Dr. Justine Carr.
So with that, Judy.
Agenda Item: Current and Future Thinking: Projects to Move the Strategy Forward
DR. WARREN: My task is to show you a little bit about what we have done in the last ten years as a Committee. The first thing I have to do is recognize the co-chairs. I would like for them to stand.
Jeff Blair was the first co-chair, followed by Simon, who is standing next to him, followed by Harry who is next there, myself, and then our new co-chair that will be joining me, Walter Suarez. Without these gentlemen it would be a very difficult task. They have left big shoes to follow in. We will try our best. We have been educated by Jeff and Simon and Harry, so Walter and I are ready.
What we wanted to do is tell you what this subcommittee has done in the past decade. Harry has already given you some of the highlights.
We were first mentioned in the HIPAA legislation as being responsible for recommending HIPAA standards for electronic transactions, code sets, health care identifiers and data security. We accepted new members from the Senate and the House of Representatives, that was Jeff Blair, and our subcommittee was created.
We then recommended to the Secretary to adopt HIPAA standards. These were the transaction standards known as 4010, so we knocked off the first letters of that -- you learn very quickly in Standards to talk in acronyms -- NCPDP which is pharmacy, and telecommunications standards. We also recommended code sets for billing and health claims, ICD-9 at that time, CPT, HCPC codes and NDC. We worked on unique health identifiers for providers and employers, and we worked on securing standards for the transmission of data.
We also began to monitor the industry's readiness to implement all of these HIPAA standards, and this required quite a few sets of hearings to help the people that we serve in the country to get ready to adopt, and not only adopt these standards, but implement them, and then find out what the difficulties were in implementation, and then try to make more recommendations to make the next set easier.
We looked at standards for health care billing and reimbursements, statistics. We had health care providers and payers to implement the initial versions of the HIPAA standards. So you see the mantra that we deal with. It is always the transactions, the code sets, the identifiers and then the privacy and security standards.
We recommended to HHS, and they have adopted regulations to implement the next version of the HIPAA standards. So the migration to version 5010 and V.0, which is due in January 2012, these have to be implemented before we can go to ICD-10, and then ICD-10 quickly follows on in October 2013. So quite a bit of challenge for our country to implement.
We tell them, if you haven't started planning implementation of ICD-10 now, you are about a year behind. So people are really scrambling to get to work.
We set forth a strategic framework and criteria for analyzing and selecting patient medical record information standards. This framework was endorsed in 2000. The first set of transactions based on this framework were looking at HL-7, NCPDP, Dicomm for images and IEEE 1073. Those were recommended in February 2002.
A second set of standards on code sets recommending the use of SNOMED, LOINC and RxNorm, were set forth in November of 2003. You begin to see that we get very busy as the years progressed.
We then worked with the government's consolidated health informatics initiative by getting them ready to adopt relevant clinical terminologies, not billing ones. So SNOMED, LOINC and RxNorm have been included in their interim final rule with specifications, and now some of those standards are flowing forward into the meaningful use final rule, all for public health reporting and quality reporting.
Then we hit e-prescribing. This was probably one of our subcommittee's finest moments, because for a change all the people who came to testify stayed and came to each and every meeting. They started collaborating outside and in the back rows of the meetings in order to make this happen. So it was a really wonderful moment to be part of that. I had joined the Committee by this time.
So legislation, the Medicare Prescription Drug Improvement and Modernization Act of 2003, mentioned the NCVHS and gave us the directive to make recommendations on the standards for e-prescribing. So we made those recommendations. What has been fun for us is, one of our recommendations was to encourage HHS and the DEA to collaborate and coordinate on making sure that we could do e-prescribing for controlled substances. That came into a final rule this year. So we have been very pleased with the way that that has happened.
Standards for clinical documents. We also recommended in 2005 that the HL-7 clinical document architecture be used as a claims attachment. ONC in their Health IT Standards Committee has followed that up and said the continuity of care document, which is based on the CDA, should be part of meaningful use for communicating medical histories, problem lists, et cetera. So you can see how we start building, and we have created a tag team in Standards.
Now our challenges. Our new challenge that we have is that -- and I'm sorry, I thought I had edited this out; I am now told that it should be the ACA of 2010 Act, the Accountable Care Act. NCVHS was mentioned again and it passed with quite a few different tasks to do, one of which was to make recommendations to the Secretary about health plan identifiers, so closing up some of the identifier loops that were first mentioned in HIPAA. We are going to be very busy this summer as Harry mentioned, because we have to have a letter to the Secretary by September. As you all remember, this act came out in March, so very rapid turnaround. Then the health plan identifiers have to be implemented next year.
We also will be working on making recommendations about operating rules. We also have to have a letter by September to go to the Secretary on recommendation of operating rules. This is the actual implementation of a lot of the standards.
We need to insure that health IT standards are developed within the context of the NIHN model, public health policy, the data stewardship framework that we have developed, and also thinking of the needs of users. So you can't just think of standards in isolation of doing a wonderful thing. You really do have to make sure that you are aware of what everyone else is doing and try to make that a cohesive group.
We need to accelerate adoption of clinically specific standards that were mentioned in ARRA 2010, and some of the extension that ARRA had on top of the HIPAA standards, like some of these identifiers and code sets, et cetera.
Our subcommittee feels pretty strongly that we need to start recommending rules and methods to make implementation of these standards easier. This is one of the biggest challenges that our health care sector has, is trying to mobilize their own workforce to understand the impact and how to implement these standards into their information system. So we want to try to get on top of that one.
We also feel that part of our job is to do a complete analysis to identify the gaps and create or recommend solutions for those standards gaps.
We need to work with industry towards a successful implementation of this next version of the standards, meaning 5010 and ICD-10. The community is getting very nervous with the deadlines for those, plus the new deadlines that will be coming out with meaningful use hopefully sometime this summer.
We need to meet new health care requirements such as the health information needs for medical homes, personalized medicine, clinical research, health surveys, syndromic surveillance, human genomics and proteomics.
We tried to select a list that showed you the wide variety of data that we are now tasked with messaging and creating and giving to various people.
The next challenge we have, as if those aren't enough, is that globally we are working on health IT standards. So we need to start creating new models for us, the U.S., to participate in some of these global models and standards development.
Back to tools. Not only do we have to have tools of helping people implement, but if you notice in my presentation, we started out with implementing a version of a telecommunications standard 4010. We are now going to 5010. So how do we keep track of versioning? How do we keep track of harmonizing all these different disparate standards? There has got to be some sort of approach in there.
We feel our ultimate goal in health IT standards is to support the information exchange needs of a health care system we are talking about a very broad one. I had spent a lot of time with our Populations Subcommittee trying to understand what that part of it is.
We also feel that we need to empower consumers to improve their own health. Harry just talked about a presentation we heard about this morning of using health care data the government collects to really develop applications to have consumers manage their health.
So it is not only the GPS on the inhaler, you could also take that down to a personal level, where that individual can then go back and look, where was I when I had this major asthma attack. So do I want to go back there again or do I want to avoid that place so I maintain myself health here. We never had that ability before.
We want to insure high quality health care is delivered efficiently, securely and effectively. With that, we also felt that we had to develop a set of guiding principles for us to look at health care IT. Standards should be developed with user input. It should not be a closed committee looking at what they think is the best thing for all of us. There should be a diversity in the participants to be encouraged, so from all of the health care disciplines, also from our consumer groups to help develop the best standards.
Standards should be developed in an open manner, consistent with ANSE guidelines. Not meaning that they are ANSE accredited, just using the guidelines that ANSE had put together as the best practice in developing standards.
We feel that standards should be developed to facilitate interoperability and better decision making by clinicians. Standards should not specify technology, architecture or process requirements. We need to leave it open for all the innovators in health care IT to come out and help us with new things.
The example that I gave to Harry the other day is, I do work in a school of nursing. I teach informatics there, both for nurses as well as multidisciplinary. I had encouraged our undergraduate faculty to help our beginning nursing students to understand health IT. So I got faculty to finally agree that students should have PDAs. So three years ago we required PDAs with reference text, et cetera. Students love them, faculty weren't too sure, they were still trying to adopt it.
This last fall our students revolted and said, we are no longer buying those, we all have smart phones. We carry all of our textbooks around in our smart phones. So they quit that long before faculty realized they had smart phones. So we are going to be seeing a very rapid change in technology, devices, et cetera because of the things that are coming out. So that is our challenge, is to keep on top of that, keep ourselves educated, and hopefully come up with the right standards recommendations to keep us in place.
Thank you.
MR. HOUSTON: Good afternoon. I am John Houston. Leslie Francis and I are going to tag team this next section. I know Harry said I was going to do it. I am going to do the first part.
I did want to dovetail what Judith had just said in her last sentence, where she talked about the rapid change in technology. It is going to have a profound impact on standards, but with that rapid change in technology I think you are also going to see an incredible impact on privacy and security, and talk a little bit about that.
I'll just give you some background for the last ten years. We have had three chairs of the Privacy and Confidentiality Subcommittee, Kathleen Farley, Mark Rothstein and then myself, and Leslie are the current co-chairs, as well as some really talented lead staff, as Judith had said.
About two years ago, we took the security function off of the Security Subcommittee and rolled it under the Privacy and Confidentiality Subcommittee because we thought that there was a more natural tie between them. Simon and Harry were both chairs of that, and then Jeff and Judith were also chairs, so we have a rich history and a lot of leadership there.
In terms of what we have done over the last ten years, I decided over the next slides to list all the different things that this subcommittee has done. I don't intend to talk about each one of them, but I think they logically break up into two separate groups.
I think the first grouping of recommendations and letters and work relates to the HIPAA privacy and security rules. Those are letters providing recommendations and insight on HIPAA.
You will see though that it goes from 2000, 2004, 2005, 2006. Then about 2006, there is a decided change. All of a sudden the Committee focused its attention away from HIPAA, not that HIPAA wasn't important, but we started to look forward in some of the recommendations out of NCVHS. We started to look at the NHIN and some privacy and security requirements associated with this concept of a national sharing of data or regional sharing of data. So we spent a lot of time talking about that.
We also delved into the interaction of things like HIPAA and FRPA. I think there was a letter in there about -- I can't remember it, you can see. Nonetheless, a lot of work went on initially in HIPAA, and then we moved to look at the NHIN and this changing focus.
Today is what is the challenge in the next decade? This came from the concept paper. I will read it. With the increasing adoption of the interoperable electronic health records technology along with the move towards global access to health data and emerging new uses of data, methods of access and information availability, there is a significant new and unique privacy and security concern. That in a nutshell is what is going on right now. Whether it is on Ipod or a PDA or on a smart phone, it is amazing how the access to data is changing. If you look at all these different sources of data that either have been developed or are developing, if you look at the adoption of EHRs and this whole idea of HIEs and regional sharing of data, it is amazing how much power we have and how much data we have. But with that we are raising the bar in terms of what we need to do from a privacy and security perspective.
So appropriate privacy and confidentiality and security protections, data stewardship, governance, fair information practices, and understanding of the shared responsibility for the proper collection and management and sharing and use of health data are critical to addressing these concerns, how we go about it. We obviously have ways we have to comply with, but you look at things like data stewardship and governance, and the population understanding what fair information practices exist and need to exist, they are all incredibly important and intertwined in trying to understand where we need to go.
In looking at the challenges for the next decade, we pulled the word balance out of this slide, but I think there is a balance that needs to be achieved here. Clearly we have to be concerned about protecting individual rights, that is first and foremost. But there is a need of society, health care reform, containing costs of health care are all very important, and those types of needs often require access to data. So the idea of protecting the individual is not absolute, there is a balance.
Obviously we need to establish appropriate privacy, confidentiality and security rules and framework, but it cannot impede the efficient and effective delivery of health care. We cannot get in the way of trying to reduce costs and improve efficiency and quality. So again, it is a balance, and that balance we always have to be mindful of, and it is a real challenge.
So with that said, I am going to turn the next part of this over to Leslie.
DR. FRANCIS: First of all, just to think about all the new kinds of information that are out there. I am sure you are aware of many of these, but we just made a quick little list of some new data types, new types of genetic information, new ways that data get put together and structured that can yield new kinds of information such as the interplay between locations and use of inhalers.
Web search patterns. Probably the most famous of those was the syndromic surveillance, Google being aware of the flu before CDC was. Those are just some examples of new data types.
New ways that data are structured, electronic medical records, health information exchanges, whatever national health information network turns out to be, data in personal health records, which are increasingly platforms, aggregators, the whole idea of the personal health record is a little thing that I put on my flash drive and leave in my pocket anymore.
Health 2.0 websites. I don't know if you have heard of Carrot.com or Sparkpeople, to Patients Like Me, which has become much more well known. The Carrot.com encourages you to engage in various forms of healthy behavior. It gives you little carrots when you do well.
Then various kinds of data flows. Think of all the privacy issues that are raised when patients authorize the disclosure of what is in their electronic medical record to personal health record, depending on what legal regimes attach to the personal health record. There could be very different protections. Data flows from electronic medical records that have been in the presence of a single facility to health information exchanges or through national networks, and then from health information exchanges or national health exchanges for public health purposes, for research purposes, for things like state all-payer databases or the kinds of community health information initiatives that we were hearing about this morning and that we heard about from Ed just very recently.
I will just give you one example that came up. We had hearings on Tuesday, hearings that are furthering our work on sensitive health information. Imagine the difference between a domestic violence victim whose children are taken to a pediatrician for care, when she has a stalker who is trying to find her family. If the records just stay in the pediatrician's office, the opportunities for access or for finding out are very different than if the records end up in statewide or nationwide exchange and someone, her stalker who she may have left many states before has some capability to gain access to records.
I was sitting there as I was thinking of the asthmatic kid with the inhaler cruising around town and the inhaler suddenly gets used, and it becomes clear that in a particular community inhaler use is popping up massively down by the river of a Saturday evening, and the stalker of the domestic violence victim knows that the kid -- after all, he is the kid's father, let's say -- knows that the kid is a teenage asthmatic, suddenly realizes where all the teenage asthmatics are likely to be found of a Saturday night. No identifying information at all, but think about eventual risks of both types of new data flows.
So challenges for the next decade, respecting many values. We think it is crucial to have appropriate security, privacy and confidentiality protections to maintain public trust, to protect individual rights and choices. We also think that access to data, use of data are critical to improving health care. If we learn that kids use their inhalers down by the river of a Saturday night, health care of asthmatic kids may be better. We are going to have uses of data to contain health care costs, comparative effectiveness research. That is really important. We are going to have improved tools for public health and biosurveillance. We may learn we want to clean up the miasma down by the river, and we are going to have enhanced research opportunities of all kinds. Those are all critically important.
We had a conference that was one of the earlier events of the 60th anniversary year of celebrations that NCVHS very kindly cosponsored with Milasko at the University of Utah. We called it something like law and ethics meet the new world of bioinformatics. We couldn't think of a really snappy title; that seemed to capture it.
We had most of the members of the Privacy Subcommittee giving talks, John Houston, Sally Milam, Walter Suarez and staff, Mia Bernstein and Marjorie also gave -- Marjorie Greenberg gave a talk. Then we had a number of privacy folks as well or informatics folks from all over the country, trying to scope out the territory of issues, everything from sensitive information issues, governance, what is deidentification, what can it mean, what are the comparative risks of deidentified data sets in different contexts, what are the regulatory roles of state governments, of different agencies in the federal government, of private standard setting organizations and on beyond HIPAA, or with HIPAA.
Two current priorities that we are working on that that you may be interested in. As I have just mentioned, we had hearings. John showed you that in 2008 we had a letter recommending the capability to identify and sequester sensitive categories of health information when records are transferred for proposes of treatment over the NHIN. We are going to be building on our earlier hearings about sensitive information to make some recommendations about which kinds of categories of information or general informational questions like an entire record, which had the address perhaps of a domestic violence victim, should be thought about when interoperable exchanges or electronic medical records systems get created to create the capacity to identify these kinds of sensitive information.
We are not going to look at what people should have control over or what kinds of controls. We are going to look at what sorts of identification capacities are critical as these new data structures get put into place. If a health information exchange is developed without the capacity to identify sensitive categories of information, it will be the case that people will not be able to make any choices except all in or all not. So we are going to be drafting a letter and bringing it to the full committee in September for consideration of specific categories and how they should be understood.
A second question that we are looking forward to hearings on in September is the question of governance. Put more generally, how do we make sure that people who say they are protecting privacy in certain ways actually do it. We know we have a tentative list. It is about two pages of who the major players might be in the private sector and the public sector and the quasi private sector, who play a role in governance.
So our starting place may just be a scorecard, but we are going to be in September scheduling hearings on the question of governance.
In conclusion, what I want to say is that sometimes I think it is very sad that privacy is perceived as an impediment. We don't see it that way. That is why we went back and forth on the balance point. Balance is an equilibrium, it is not a tradeoff. We see privacy as about enabling the new and wonderful world of health information and health technology to move forward in a way that benefits all of us.
Thanks.
DR. STEINWACHS: I am Don Steinwachs. It is a pleasure to bring you the Population Health Subcommittee and its activities.
Just to reflect back for a moment, I joined the Committee in 2002, about eight years ago. At that time, it was striking to me that the Population Health Committee was overlooking and trying to figure out how to get the information needed by the public health sector, working closely with NCHS and others.
On the other side were groups in standards, privacy and security who were dealing with the critical elements, but it sounded like two different languages. It was HIPAA, it was NHIN and so on. We know we can use this, we know they are important, but how do they come together.
So the fascinating and really exciting part is that it is coming together. You can see a day when you are talking about the vision for electronic health records, for data linkages and for other activities, that indeed they can meet the meets of both individual health and public health in the kind of NHIN framework.
If you had asked me eight years ago was I certain this was going to happen, I would say wait a minute, this may be two parallel universes we are looking in. So it is an exciting time.
To honor the past co-chairs of the Committee. Lisa Iezzoni. I joined when Vicky Mays was co-chair, and currently myself and Bill Scanlon are the co-chairs. We are making a transition. Larry Green will be the co-chair with the transition, and Bill is moving on to another co-chair role. We find that we have a breadth of interest and more and more, everything we do involves all the subcommittees working together. So we are sharing those resources and interests.
I don't need in this group to give you a definition of population health. But I asked Marjorie, does the Committee have a definition of population health. She said, we have in the visionary report which I sent you, we have a description, but we don't really have per se a definition.
The common elements are the ones that you understand well. That is, it really is a focus on the level and distribution of health, a focus of populations at risk and vulnerability like Ed Sondik was talking about, the kind of focus of public health.
It also is an area where we are looking for being able to develop information that gives accountability, both in the health care and in the public health sector.
To follow in the same tradition here of accomplishments, I went back and looked at four key letters and reports that the Population Health Subcommittee was involved in over the past decade.
The first one was on classifying reporting functional status. As you know, the Committee for a long time has talked about the need for capturing functional status, health status, to complement the information we have on mortality and what we have on morbidity. So recommendations were made that identified the ICF, International Classification of Functional Disability and Health. It was a promising approach. The report very clearly talks about that you could use a range of different measures, but that this information is essential if you want to understand the health of the population. And functional status is highly predictive, as you know, of mortality and bad outcomes.
We made some progress. That progress is reflected in the consolidated health informatics initiative. We supported NCHS to endorse the ICF as the vocabulary, and the ICF is included in the National Library of Medicine's unified medical language system.
What is more exciting to me actually are the conversations that talk about the patient portal in the electronic health record, the opportunity that physicians and other clinicians engage patients to complete health status measures. Those will go into the electronic health record that can be reported, if we have access to public health as well as medical care to health record. That also provides information that we are going to be able to get through surveys and not part of many of the activities that go on in health care delivery.
Possibly the outstanding report in the past decade, that the Population Health Subcommittee took the vision for health statistics in the 21st century, laying out a broad and ambitious vision. Dr. Sondik referred back to this. It talks about the factors that influence health and makes you think about what has to be captured in that Nationwide Health Information Network, if it is going to serv the needs of population health as well as serving the needs of individual health care services.
The core concepts were defined in this. When I joined the Committee and until today, we still think of this as a rejuvenation of the thinking of what the Committee has to do and where it is going. We did an update. Marjorie helped us, the consultants who had been involved in the original report, to look at where we were on the recommendations that were made. We found that eight of the priority recommendations we made progress on since then, which I think is very gratifying, because sometimes you feel that those reports that take on a big vision lay off specific recommendations. People embrace the vision, but you aren't sure they embrace action that goes with it.
When I joined the Committee, Vicky Mays was leading the effort to look at the kind of critical questions we have about race ethnicity, primary language, and the fact that we don't have the data routinely captured so that we understand the relationship between those and what happens in the health care setting, and what happens in the population.
We also brought sharply into focus that when we talk about the OMB standard of capturing race and ethnicity, we all do it at the minimum level usually, so that we capture a few categories of race and one of ethnicity. But yet you look at America today, and to say that you should pool together all of the Pacific Islanders and everyone from Asia and call it one group doesn't make a lot of sense. You take all Hispanics, and no matter whether they came from Spain, Latin America or Puerto Rico, it is all one group.
So we still have a long ways to go. That report helped us focus that we need to think about granularity relative to the population we serve and the population you are interacting with.
So in some cases, in clinical practice you ought to be capturing something that is much finer than the basic OMB standard. In other cases the OMB standard may be sufficient. The good news is that the meaningful use criteria as part of the ARA implementation of electronic health records does include collecting information on race and ethnicity.
Not to be outdone by the 1986 efforts to link data, we revived data linkage use in 2007. It only took 20 years. There were parts in between that; I probably missed that. We said, look at the data we have available. If we could link some of this together, we say socioeconomic status is a major determinant of health. We are not sure of all the pathways it plays out, but of the health of the public. You could go to Social Security, you could go to the Census, you could go to the IRS and Education Department; we could put together refined measures of social position in society. You could even look at it changing over time for people and so on. Why don't we do it?
So we held a fascinating set of hearings, a workshop, and we brought all those parties together. We brought within HHS and we brought together IRS, the Department of Education and the Department of Agriculture and the Census, and began to understand some of the challenges. Some of them come back to privacy and security and the laws that underpin this.
What is remarkable to us is that when you talk about government agencies sharing information, it wasn't going outside anyplace, but it was taking six months or more just to get two agencies and their lawyers to agree to share the data. Then once you had this linked data set, everyone said, that is much more identifiable. Who is going to hold it, who is going to control it, where is it going to go.
So we made a series of recommendations, one about trying to facilitate that process, the other about data centers and access. Data centers have been the way to get at linked data. The good news is, they are expanding, and there is more hope for greater expansion.
The challenges for the next decade provide us with as I said before unprecedented opportunities. You see a convergence. We talk about the data sources that we need and the ability through IT to capture those, link those, and make them more broadly available and maintain security, privacy.
I am going to hit on only one point here, because I am looking at the clock. You do realize that the new Chair of NCVHS follows me, and I will soon be cutting into her time. So I am going to work faster.
The bottom point I want to pick up on is, build a public health information infrastructure. We have a huge infusion of funds coming into the electronic health record and to building some key parts of the NHIN. It is less clear how we are going to strengthen how we are going to strengthen and make sure that the public health sector has the benefit and can link in and can utilize and come in to the 21st century.
We know that within this country there is a lot of diversity. There are a lot of needs, but we don't always have the data to the decision makers that need it. So when you think about what we have at the local level, many of these challenges we can talk about nationally. We cannot really talk about them well in the community, maybe a little bit better in the state, but not always, and I will come back to that.
We see the need to extend the health information standard, health statistics, to the local level, where lots of key decisions are made. You can begin to imagine what a health information exchange could be linked into the public health sector, with underpinnings of trying to estimate denominators underneath that. You can begin to talk about, maybe a local health officer might actually have some pretty concrete information about what is going on in the community, and know how biased it is or unbiased, because he who is engaging the system and who isn't in terms of their characteristics, not so much the individuals.
This requires data linkage. This opens up opportunities for identifying at-risk groups, and it provides opportunities also to evaluate effectiveness of initiatives that are going on in communities, which is where much of the action is.
We see ourselves also looking at opportunities when you think of linkage of EHRs with electronic health record surveys and administrative data, and meaningful use has become a very important policy instrument and seeing that being advanced. We are talking about developing capacity within EHRs to have information that could meet some standards, is codable. You can pull it out, you can think about being able to link it. There are lots of other issues entailed in that, because we need to know much about the quality of the data and things that we have asked for many years about the paper record, are even more true also here.
So when you think about EHR as collecting standardized data, we know now with the individual vendors, it is not exactly something you can rely upon. But meaningful use is a push into the electronic health record age, interoperability. We are moving in a time and moving quickly, it seems to me, where there is a real opportunity to think those problems will be minimized, even though they will still persist.
We talk about here three broad areas as future agendas. I have touched on them already. One is trying to move information from just the national level where we know a lot down to the local and state level. Through health information exchanges, through EHRs, through linking surveys that are done locally into that information through vital records and vital statistics, we think there is a real window of opportunity that we need to look at and address.
We think data linkages are key to this, but yet still problematic. So it is an area that is going to still be on the agenda of years to come. But yet it has the real potential of realizing the richness of everything we gather.
The Health Reform Act opens up opportunities. The Committee will be looking at how to make the best use of those. But in using information, we recognize there is a very important research component, and many times underfunded, the research capacity that the National Center for Health Statistics has and other groups who are looking at the quality of data, who are looking at measurement issues and so on, is very limited. It needs to be expanded if we are going to make full use of the information that we have there.
We also think that a major role in population health is looking at the impact of health reform on variations in health care, on disparities in health care. We hope health reform is one way in which we will close some of those.
Thank you very much.
DR. CARR: I have to say what an honor it is to be in front of this very esteemed group. I thank all of you for the work that you have done that has brought us here, and I look forward to your guidance in the work that lies ahead.
I wanted to acknowledge that Bob Hungate is here, one of the former chairs. Bob, would you stand up? The succession of chairs and co-chairs of the Quality Subcommittee or the work group as it was formerly called, you can see here.
What I want to do is start with the first document that I saw when I came on the Quality Subcommittee. I wanted to use it as an illustration of how the Committee is always thinking ahead to the next thing.
In 2004, Bob was the chair of the Quality Work Group. He brought forward a document with 23 candidate recommendations. I was new, I thought that was a lot, we all thought that was a lot, because it was. Yet, I have gone back to that document many times, and I use it here today to illustrate the forward thinking of the NCVHS.
This document as I look at it today was about creating data elements for assessing health and health quality. There are four categories. The first one is assessing health care and health outcomes. I am really competitive, so I am into stars and scorecards and so on, so here I am again with my scorecard.
Looking back, at that time we said in claims data it would be really great to have lab values and vital signs and other objective data measurements. I remember, we had a hearing trying to think where would we put it, what box would it go in, how would we do it. Yet, when I think back to just a couple of months ago where we sent a letter to the Secretary about meaningful measure using electronic health records, one of the key recommendations is that we have a data set of key elements that we can mix and match for any number of measures, but that the building blocks begin with things like selected lab values, vital signs and so on. So there we are.
The next thing was a modifier on present on admission. That came to pass, and that is transformative, as we look at -- as we use administrative data still today, even in the world of the electronic health record emergence, administrative data is what all of the public reporting on quality is about, and present on admission has added a validity to that data that now helps understand what happens over the course of the patient's inpatient stay.
Also noted at the time was the importance of having the operating physician. Then moving on, there was talk about getting date and time of admission and procedures and start and end dates of care episodes and service. Yet that is exactly a theme that has emerged as we think about episodes of care, a condition that may have many admissions or many outpatient visits, or even as we think about our accountable care organizations, our care within that. So I think that theme was very much right on at that time.
Functional status we have heard a bit about already. We had the report out of the Committee in 2001 and ICF adopted as a standard. But in the PPACA 2010, there is a requirement for functional status reporting, so there we are.
There were some other things that we have not seen as much traction on, but I am going to focus today on the ones that we have.
The next topic was building data infrastructure, ICD-10. It gets two stars because it is almost there, in June of 2013. Mapping procedure codes across settings gets back to the important concept today of episodes of care. EHRs should have decision support, uniform data standards, import-export of core elements for data coordination. Just talk to anybody at ONC, that is what they do.
The national provider identifier is up and running. We also had a number of letters in 2007 about that. I am going to decline from comment on the national patient identifier, you can draw your own conclusions.
The third area, balancing quality and privacy, again a theme that we have heard about today, being able to link data to improve quality while protecting privacy.
There are a couple of things to talk about there. First, as Don mentioned, the letter in 2007 about the power of linked data. In 2008 -- I should ask Simon to stand up on this, and Harry and many of us -- we had about ten hearings or something in two months. It just was nonstop, and weekly phone calls. We ere asked by ONC to take on this issue of, how as these data sources emerge, how do we -- it was called secondary use. We said, we are not going to use that term, we are going to say uses of health data, because it is not just secondary. We built on work that came out of ANYA. It was a nice -- we attended the hearings and ANYA presented to NCVHS. We came out with recommendations, many of which were included in the HITECH Act.
In 2009 we reflected once again upon the work that we had done in such a short amount of time on enhancing protections for use of data. We came up with a concept of simplifying it to a primer, here are the things we need to think about in protecting data. It actually had two sides to it. A big piece of it was privacy and protection of privacy, but just as important is the proper use of the data, the integrity of the data, the completeness of the data, and understanding the uses of the data.
Then finally, I had to add, because this is a just-in-time technology, but you can add things the morning of your presentation. We had a terrific presentation this morning about the Community Health Data Initiative. We had also held a hearing about Health 2.0 and all these new technologies.
Today we saw in action the kinds of remarkable information that can come out of that linkage. So again there is the balance and the tension. You heard the tension, observing it as each speaker has their emphasis, but it is what makes NCVHS so rich. We have strong representation of the whole spectrum of considerations, and we have a great process to our recommendations.
The third area is reducing outcome disparities, modify mechanisms for reporting race and ethnicity, investigate how to best capture race and ethnicity, et cetera. So in 2005 as you just heard, we had the report that Vicky Mays had authored. In 2010 the Executive Committee were the first group to hold hearings on meaningful use criteria. Included in the draft that is now under consideration is information on race ethnicity, primary language and disability status as part of meaningful use. So that was the fourth half.
So that is the first half, the building blocks for quality. As I look back on what we have done in the last few years, it is about taking those data elements and using them to assess quality of health and health care and measurement.
Here we have had a number of hearings, reports and letters. I won't go through all of them, but on performance meaningful measure and quality, merging administrative and clinical electronic data, quality measurement and public reporting, and then also thinking about the medical home, new model of care and how we measure that and what are the things we should be measuring.
And as I said, meaningful use; we generated two reports based on those hearings back in April of '09, another marathon. Then just this last year we have taken on meaningful measurement and made some recommendations to the Secretary on that.
Now a couple of thoughts and challenges for the next decade. I will start with the recommendations that came out of our letter to the Secretary on meaningful measure. It is very much aligned with the 2005 report from the IOM on performance measurement. We need a national coordination for measuring and monitoring health status, quality effectiveness and efficiency of health service provision, health service access and utilization.
I think we had a terrific hearing with wonderful accomplished presenters who had done a lot of things in their particular area. Each one was a one-off. Everybody was approaching it in a different way. While great, it undermined the promise of getting a synchronized effort to tell one's story. So the take-home from that hearing was not what we heard, but what we didn't hear.
The second recommendation was optimizing the opportunity to capture relevant individual and population health information in the electronic health record. Here again, we were l looking at the idea of the building blocks, to put now today what are the key elements that we know we are going to need. We may not know the measures, we may not know what we want to measure, but if we have certain elements that are there, they will be there for us to go back and draw from.
Then the third was strategic leveraging of the new sorts of health data. You have heard about that from all of our speakers today.
The second challenge for the next decade is harnessing the potential for improvement of health and health care with the dramatic expansion of new data elements and measurement. We again heard about that yesterday from ONC, what they are calling element three. In other words, we have data and we can transmit it, now what do we do.
I think a key thing there is, where is the leadership and the expertise in this data aggregation and analysis to address relevant clinical issues in health and health care. So while at the local level, electronic health records and health information technology is improving care delivery by its speed and efficiency and availability, we are focused also on the larger story, the kinds of stories that are beginning to emerge when you are looking at a large data set and recognize a pattern that was not previously appreciated. I think that has huge importance for health.
Then second is developing methods to acquire outcomes data directly from individuals for efficient ongoing surveillance of population health status.
That ties with our final challenge, which is the measurement of individuals as the center. As a physician I have been accused many times of being physician centric, and I am getting better. But it is not about the physicians, it is about the individuals, the person, as we talked about yesterday, the individuals and their families or their caregivers. So having individuals play an active role in their health information, through their personal health records and tethered EHRs with relevant clinical information and decision support.
Finally, outcomes assessment, reflecting the voice of individuals, including functional status as a measure of outcome, and expansion. We have learned a lot from the HCAPS data. Now every discharged patient is asked, did your doctor communicate, did you understand, did you understand your nurse, did you understand your discharge instruction. It moves you out of the physician centric, clinician central model, recognizing if you did a great job but the patient says, I didn't understand anything, we failed. So the patient's voice has become a very powerful and critical component to our understanding of our care delivery. So, moving beyond the satisfaction, but the care experience and the meeting of the patient's expectations of the outcomes of their care.
With that I will stop. Thank you for your attention.
MR. REYNOLDS: The exciting part about the presentations is everyone that gave the subcommittee presentations will be ongoing with the Committee. So they took the assignment, presented the assignment, and they are going to do the assignment. Justine will probably grade them with stars after they are done and have the program going on just like the quality stuff. So it shouldn't be any problem at all.
Before we take a break, I know some more of the staff that has supported us have come in. So those who weren't here when I first introduced the staff, please stand up.
Another person I would like to mention is Jeff Blair. Jeff has been with the Committee for 14 calendar years. We had a celebration of Jeff's career last night on NCVHS. We had one term: Be like Jeff. So if you know him and you be like Jeff, you have got it covered. You are going to do the right things.
Another person I would like to mention is Jim Scanlon. All of us that have been involved in NCVHS didn't really understand HHS well, but Jim was always the one that quietly, very quietly in many cases, and if he didn't say it at all you knew you were really messing it up, Jim is very quiet, but does an awful lot with that quiet demeanor and is a real sage for us to work with.
I would like to mention somebody else, Dr. Rob Kolodner. Please stand up, Rob. Most of you know, Rob was the National Coordinator for awhile. A lot of times, you collaborate closely with people, and a lot of times you collaborate with good friends. I think that is the thing that we all can say that have been involved with the Committee, that Rob was truly a friend of the Committee, truly made a major difference with that, and got a momentum going that has allowed us to continue that with David Blumenthal. So Rob, I salute you, taking on a new job, and being such a good partner with us. Thank you.
I will introduce Marjorie after the break, and then we will turn it over to her to say a few things about the video. We will be back at three o'clock.
(Brief recess.)
MR. REYNOLDS: What we are going to spend the next 20 minutes doing is, since you heard from the Committee chairs on what we are thinking about, open it up for a short 20-minute discussion. Then we are going to have a video. Then we are going to hear from the past chairs.
So with that, I will open the floor for anybody that has any comments, questions. Are there any questions or any discussions that anybody had based on what we talked about? Before I do that, I would like to introduce John Lunt, another good friend of the Committee, another person that worked very closely with us at the Office of the National Coordinator. I am going to keep an eye on the door, as people come in that have been important to us also as a Committee. John, welcome, good to see you. Thank you for all the help you have been to this Committee.
Any questions or comments or anything else?
MR. PAYNE: My name is Rob Payne. I am with the District Medicaid agency, and working with an HIE project, the patient data hub through the Medicaid agency here.
I have a question. I think I heard one of the speakers say they will not encourage standards for interoperability because that would constrain the marketplace coming up. I just wanted them to speak a little bit more to that. Everybody that is looking in the field is looking for standards for interoperability. I just wanted to get a little more insight into that particular recommendation.
DR. WARREN: It is a good thing you asked the question, because it is not what I intended. What I meant to say at the very end is that we have certain guidelines for developing standards. Standards should not constrain technology, processes or things of that nature, or the data themselves or for the transmission of that data.
So, not that we don't want to encourage standards for interoperability, because we will never have interoperability without standards. I don't want to create a standard that says I have to have a PDA to do this. I want to leave it open to whatever new device is out for input, can then use the standard. Does that help?
DR. SONDIK: Judith, you said something that struck me as very interesting, but it is all interesting. You said something to the effect that privacy is not a barrier, I think you said. Didn't you say that?
DR. WARREN: I think Leslie said that.
DR. SONDIK: Oh, Leslie said that? You said privacy was not a barrier. I thought that was kind of interesting, because for me it is a glass half full, glass half empty, I suppose. I am looking at it from the standpoint that it must be maintained. You can turn that around and say that it is being maintained, but I say it must be maintained to a certain degree. That is the thing that we don't talk about, is the risk, the level of risk associated with these.
If I said it has to -- I'll give some probability, one in 10,000, I have no idea what that means, but you could turn that around and say that 9,999 out of 10,000 times -- again, I am being imprecise -- privacy will be maintained. Make it a positive statement. Is that the kind of thing you were getting at?
DR. FRANCIS: I tried to use should not be seen as a barrier, as a way to think about these issues. I think there is a standard historical view of public health and bioethics. Public health as being about utilitarian values of the good of the whole, and autonomy as being about individual choice, are ineluctably in conflict.
I just think that is way too simplistic a view. Public health in fact enhances individual potential for choice. If you make choices that are well informed, you understand -- just to take infectious disease as an example, if all I worry about is that my privacy will be violated, I forget that there are all these vectors out there that would be putting me at risk, just as I could be putting someone else at risk.
So I think that the dichotomist conflict way of viewing it is deeply problematic. What we have to be doing here -- and I'm not going to say the answers are easy, at all, but what we have to be doing here is exploring synergies and reaching new equilibria, up at a level where you don't just see it as a one in 10,000, but you are trying to explore options where you get different benefits and different risks.
MR. HOUSTON: To expand on what Leslie said, there is this idea of the public trust, and if the public doesn't have trust that adequate privacy exists, then that is a barrier. Obviously the opposite is that if there is public trust, then people will be much more open to these new ideas about how we should be sharing information and using information for their benefit.
I remember a study that was done some time ago, a research study in Canada. The question was posed to people, do you want to have the right to approve that your information will be used for research. The answer came back and almost everybody said yes, I want to be able to approve the use of my information for research, even on a deidentified basis.
Then the next question that was asked was, if you are asked whether you want your data to be used for research, would you let it be used for research, and almost everybody said yes. So they just wanted to be asked.
I think it is the same argument. People want to feel that they have a trusted standard and that adequate protections are in place. But once they feel that way, I think most people would say, all these new opportunities and uses and data flows are acceptable.
DR. CARR: Another thing that I am struck by when Leslie was speaking about the analogy about the inhalers by the river. If somebody were looking for someone who was a teenager, they would just go on Facebook and find them. It says to me how the world is changing.
In isolation all that you said is true, but it is a lot of work to do that. The world has changed so much that there is so much information available. So it is not an either-or, but it is being in an environment that is changing every day.
DR. FRANCIS: One of the crucial roles of this Committee is education about how things are changing. I will just give you -- there is a lot of talk about how the Facebook generation doesn't care as much about privacy. There was a recent data driven study that was reported in the New York Times just a couple of weeks ago. I had picked it upon SSRN, which is the Social Science Research Network. I can give you the cite if anybody wants to e-mail me.
The New York Times article picked up on the report of the study as saying that the Facebook generation really does care about privacy, more than people thought they did. Their privacy preferences look a lot more like their elders' privacy preferences, or perhaps the reverse, their elders' privacy preferences look more like theirs.
What the New York Times didn't pick up in reporting on that study was that both older adults and younger adults were grievously misinformed about what it means to have a privacy policy. At a very high percentage, they thought that if an entity has a privacy policy, that means they have to protect your privacy, not that they have to tell you what they are going to do, but they have to protect your privacy, and that they can sue you if they fail to. That is in the larger study.
What troubled me about the Times not picking up on that in their report is, that is a perfect example of how the public could have been educated that this is not about whether people care about privacy or not, but they are woefully ill-informed about what the risk are and how to protect themselves.
MR. REYNOLDS: Any other questions? There will be more time when the former chairs get involved. As they comment, other people can jump in. You guys are welcome to make any more comment about what each of you said or anything going forward before we step down.
We have got a question.
DR. FITZMAURICE: This is a question that is focused on the Standards Committee and focused on the Quality Subcommittee. As we see what is happening with quality measures, quality measures are being looked at for their validity, for the quality of the data coming into them, and do they mean what they purport to measure.
On the other hand, we find that for meaningful use, some of the performance measures are quality measures. So there was an emphasis for getting the standards right, getting the data elements right, getting the elements so that they can be rolled up in the electronic health record and into quality measures.
Do you see in the future a joint effort on quality between the Quality Subcommittee and the Standards Committee to try to help address this complex problem?
DR. CARR: Yes.
DR. FITZMAURICE: Thank you.
DR. SONDIK: I think this is a population health question, but I'm not sure. You heard this morning about the Community Health Data Initiative, and I mentioned that as well. With the genie out of the bottle in terms of all this data now getting out and made more and more accessible and usable, and applications of it being developed, what are your thoughts about the evaluation side of this? What about responsibility for how good the applications are, whether they are putting data together that simply don't belong together for very good reasons, or they are drawing inferences from analyses that are done that have no basis when you look at it from a causal point of view, or at the literature elsewhere says this is not appropriate, whatever it might be.
These applications appear as if it is going to grow exponentially. Those involved seeing it taking off like the applications on the iPhone. I don't know if it will be that, but it is quite interesting that with a little bit of prodding, there were immediately over a period of less than three months 12 applications were developed. Now there is a competition on, and I don't know how many people from the tech community are applying all of this.
So that is my thought. Given that the Committee has looked ahead over its history, what are your thoughts about future evaluation of these applications and responsibilities that those of us in the federal sector have?
DR. STEINWACHS: I'll start, and then I'll let Bill take over. It always seems to me, once you turn something out into the public sector, and the public pay for the data. You are presenting the data in ways where it is protected, in the sense of confidentiality and the privacy of individuals.
Then it is very hard to say that we are going to do things that protect the public from the private applications, unless we can see clearly that there is some harm, much like any other regulatory activity. That kind of evaluation I would see less likely, but you might have some instances where things are done, applications are done and there is harm, that would trigger that kind of role that says, wait a minute, we didn't really think about the fact that there were certain things that you could do with the data, and you present it. You might seduce these kids out to the river bank and get caught by whoever.
The other side that I think is very intriguing says, how would you evaluate the use and what difference it makes. Sometimes you think in the American marketing sense that you just count the numbers. So many clicks on this, or ten million people have downloaded this app, and you say that is success.
But it would be fascinating to think about how would you get at how it was actually used, much like you say clinically, did the information make a difference in your diagnosis, in your treatment, in your management, did it make a difference or was it just a game, you were getting things that were interesting.
I would love to see the Populations Subcommittee talk about how might you do that. When you think of things like the health interview survey and other things, there are lots of chances to touch the public. So it would be interesting to think about what kinds of questions could you ask. Or the other way around, could you tag something onto some of these apps, so when the app goes out, after the fifth time you use it, a little questionnaire comes up and asks you to answer three questions, and if you answer three questions, it goes back to NCHS, so you begin to get some responses about that.
I would think that would be exciting to know how was it used, not just how we think it is being used.
The other part of it is, you talk to friends and they say which apps do you use the most. For some of them it is where the best restaurant is that is within walking distance of where I stand and others.
So you can see it fits into the lifestyle issues, so it probably will play into key decisions people make, whether it is the small decision of where I eat dinner tonight or a real estate decision that says, now I can map potential apartments onto crime rates in the area, and I can map it onto some other things. Here is my tradeoff. I am willing to pay a little more rent just to make sure I am not that close to something. So it is exciting to think about that it will likely be used in ways that will influence what people do.
MR. SCANLON: It is almost a question that we can spend days talking about. It is really an issue of risks and benefits. Not to rain on this initiative too much, but in some ways it is only a step forward from where we have been in the past. We have published data in the past, and people could go and access printed information and misuse it. Now we have digitized it, and with the phenomenon of the Internet, it is much more accessible to people, and many more people can think about misusing it. But also many more people can maybe benefit from it.
So the question in my mind is, first we have to make sure we use the same or even stronger criteria in terms of protecting confidentiality that we were using to publish data in printed form, making sure the data we let out there are appropriate from that perspective.
Then there is this question of what can we do beyond that. I'm not sure what it is. I can't imagine us feeling tolerant of a government that filters the data, saying this is going to be misused, and therefore we can't allow it to be published. I also can't think that we are going to be too tolerant of a government that says, we are going to invest in truth squads, and when we hear that applications are misusing data, we are going to publish the right perspective on things.
I think this is one of those areas where there are going to be very positive benefits, but there is also going to be some harm. That is the unfortunate world we are living in right now. We have had this information explosion in all kinds of dimensions. I am a fan of Google, but I know when I Google stuff, that is not all peer reviewed literature. I can't necessarily rely on things that I am seeing.
This is just another example, that if I use one of these apps, I am at risk. I have to have my own criteria for deciding the value and the validity of what I am seeing.
DR. CARR: I think it goes back to what Leslie was saying before in terms of Facebook and transparency and understanding what you had.
We had an interesting discussion with Marc Overhage yesterday, talking about Indiana Health Exchange, saying that there is a dramatic increase in people who don't have a cough. What that means is, it used to be, if you were taking a history and someone had an abnormal chest X-ray, you would ask them if they had a cough. But the incentive of ENM codes has to do with how many organ systems did you evaluate. So if you evaluate a system and say negative, that is a part of the workup that you did, work done and reimbursed. But it is not directed by your differential diagnosis.
So a person could say there has been a dramatic decrease in cough or an increase in not having cough. It just points to the assumptions that go into the data that may or may not be visible.
It gets back to another one of our major challenges. Now that these data are out there and these techniques are there, we have this responsibility to create an educated workforce, leaders, in using data, and it is not quite the same as it was.
The other thing that Jim said yesterday is that these data are adjunctive, they don't supplant the ones with numerators and denominators. I just think that we have to be very serious about who are the thought leaders and where is the locus of that leadership, meaning in NCHS, that we develop expertise and bring together the Google people and the data people and the clinical people to say what are the right questions and what is the right way to do it, and kick the tires and say, could this be true, is there anything that says it couldn't be.
MR. REYNOLDS: Thank you, everybody, if you will go back to your regular seats, please.
I have the opportunity now to -- I feel inadequate doing it, but I have the opportunity now to introduce a lady that all of you that have been anywhere near the Committee are familiar with.
We touted Jeff last night for being here 14 years. You can probably almost double it for the person that I am going to introduce. Usually when you introduce somebody you give their title. I think that would be a misnomer in this case. How many of you know Marjorie Greenberg as the Welcome Wagon? Any of us that have been a part of it. How many of you know her as the teacher? How many of you know her as a sage? You question it sometimes, I know. Sergeant at arms? Master of the budget? The conscience of the Committee. A friend, a legend, a positive legend, one heck of a professional, and most recently, best in class grandmother.
Marjorie, no other way to explain it. Please come join us.
MS. GREENBERG: And Harry is right behind as best in class grandfather.
I guess everyone knows that I believe that history matters, so I am delighted that we have this opportunity to bring everyone together to celebrate the 60th anniversary of the Committee, in the same year that we are celebrating the 50th anniversary of the organization where I have made most of my career, the National Center for Health Statistics.
I want to add my welcome to all of you. Every one of you is a friend, so if you didn't raise your hand when that word came out, I'll raise it for you.
I was thinking as the folks were sitting up here, my husband who raised his hand on sergeant at arms, he started raising his hand. We got a bit annoyed over the election season of CNN always referring to their panel as the best people in Washington or the smartest people in the news. But these are the best and the brightest from my point of view. Over the years it has been -- double Jeff's term, I think it is 28 years that I have worked with the Committee, not the whole time as Executive Secretary. I also said on Facebook this week, or was it since 1949 that I started working with the Committee? It seems that way sometimes.
But it is a great joy to me to see all of you here. I do want to thank the National Academies of Science and the Committee on National Statistics, who helped us celebrate ten years ago, and are helping us again. This is a partnership that we value and hope to continue.
Is Connie Citro in the room? Connie is invaluable. We met her at a Data Council meeting, and she may have been sorry she went to that meeting, but we haven't let her go ever since. She was very helpful from the CNSTAT in helping us prepare for this.
People have recognized Jim Scanlon. He was my partner in crime, we are joined at the hip. When HIPAA came along, I was about to become the Executive Secretary, and he became the Executive Staff Director. This could be a competitive or contentious relationship; it has never been for one minute. We both have benefitted so much from working together. Of course, ASPE has been a tremendous support for the Committee, along with the National Center for Health Statistics. I certainly want to thank Ed Sondik for his longstanding support of the Committee. Ed and his predecessors, too. Manny Finelieb, Dorothy Rice, they all were valued by the Committee, and you can see why.
The NCVHS team was mentioned, but I have to mention them again. I have these visions, some of which may be hallucinations almost. Either they tell me I am off base, or if they can go along with the vision, they make it happen. I just get to stand up here, but none of this would have happened without the team.
Our team leader is Katherine Jones. It is what I refer to as the care and feeding of the Committee, it is non-trivial. Just getting people in the right place at the right time. She is ably assisted by someone who just walked in the door here, Jeanine. If it doesn't look like it is a lot of work and it looks like it is easy, then we have accomplished our goal. I know sometimes you get to the hotel and you don't have your name on the roster or whatever, but these things are the exception, fortunately, and you all have always been good sports. But I think working with an advisory committee is a privilege and it is a challenge and it is a lot of work, and that work gets done by people who often don't get recognized.
Now, Debbie Jackson. Some of you remember Lynette Rocke, who was my sidekick with the Committee during some of your tenures. Unfortunately she just recently lost her father and she is out in Hawaii with her family, but she sends her best to all of you.
When Lynette left, I was heartbroken, because I couldn't imagine going on without Lynette, and by some miracle we found Debbie. Debbie is just the most creative, warm, sensible, fun person. She is in many ways the heart of the Committee. She comes up with all sorts of great ideas for us.
Agenda Item: Charlottesville Video: Colloquium of Current and Former NCVHS Chairs
As you will see, I have the privilege to introduce the video. I had this idea of convening the former chairs, not just here at the Symposium which we did ten years ago, but in a pre-event. I particularly wanted to do it in Charlottesville, Virginia, because of my great respect and admiration for Dr. Carl White, who was a mentor, whether you know it or not, to everybody in the room and to people throughout the field of population and public health.
When I came up with this idea, I did have some skeptical looks from my staff, these are busy people, they have gone off the Committee, they have moved on, why would they even want to come. But they went along with me. We invited all the former chairs that we had contact with, going back to 1986. They did all come, and we had an amazing two days.
I want to thank Larry Green and Bob Phillips from the Robert Graham Center, who associated us with the Department of Family Medicine at the University of Virginia, which helped organize all of this. We had Susan Canaan, who is our writer, who does so many of those reports out there and so many of the things that the Committee does have been greatly written or facilitated by Susan. How many committees do you know that have the same principal writer, though we have other people like Margaret A., who has been wonderful, and others who have come forward, but to have the same writer for 20 years is pretty phenomenal.
Susan did oral histories with each of the former chairs, and then we had a roundtable discussion. All of this was videotaped. I think there will be snippets from the oral history for the reception. If you all of a sudden think you are talking to Don Dettmer, and then you hear his voice across the room, he is not projecting his voice over there, but that is Don on video.
But then we have the challenge also -- that was a challenge enough of these clips, but of taking this two and a half hours of rich discussion in Charlottesville in our roundtable, and getting it down to about 20 minutes. I can tell you that I didn't even see it until it was 25 minutes. A month or so ago, when Catherine and Debby, who had been meeting with the video editor then for several months, asked me to come into a conference room, brought out popcorn and candy bars and other things, and turned on the switch. I just smiled through the whole thing.
So they really did all the work on it, and personally I think it is wonderful, and I hope you enjoy it. I will say that we will be posting it on the NCVHS website. We have given individual copies for Christmastime or something, when things are getting slow you can slip it into the DVD player or something, when the family is all around and they want to know, what actually have you been doing in the last 20 years. But I hope you do enjoy it.
We are going to now show it to you. I think what you are going to find is really amazing is that in a sense, what is going on in this videotape relates perfectly to what you heard before the break. All that was developed after then, and the Committee members have not seen this videotape either. So it is very aligned, the themes and the thoughts.
Harry and I were there, and Debby and Catherine, we took it all in, and Jim of course was there also, so we took it all in. But I think you will see that the continuity is definitely there.
So can we turn on the video? Then afterwards we will have a little opportunity to call on the chairs and ask anyone else who wants to comment on it. I'm going back to my chair, because I love watching it.
(Whereupon, a video was shown.)
Agenda Item: Remarks by Former Chairs and Others
MS. GREENBERG: While this is going, I mentioned that we have the team. I introduced Catherine Jones as our team leader, but I should have introduced the members of the team actually. It keeps cascading now. I am the Executive Secretary, but then I don't really do any work. Then you have got the team leader, she does some work, but the real people who really do the work, I would like to recognize them. Harietta Squire, Cynthia, and then we have other people in the room who are also members of the NCVHS team, Michelle Williamson, Hettie Cahn, Misty Jamison, others. They don't usually get introduced to music, but why not? Certainly they make sure I march to the right tune.
I think you will agree with me that this was very consistent with everything you heard before the break. We had some words of wisdom on screen, but now I would like to introduce each of the chairs who are here, and just ask them to make any comments about either the video or the experience in Charlottesville or your experience on the Committee, or anything you heard today or whatever. Once you are the chair, you have a permanent place in our celebrations, that is for sure, not to mention in our plans.
So going backwards to 1986, when Ron Blankenbaker had come on the Committee prior to that, he was the state health officer in Indiana. It was again from the point of view of a customer, or being able to make a connection with the Secretary, we had a special card with Ron, because when he was a health officer in Indiana, the Governor was Governor Bowan, who then became the Secretary of HHS. So that was nice.
DR. BLANKENBAKER: So now you know how I became chair.
MS. GREENBERG: That is probably how you got appointed to the Committee, but I think you became the chair, although he didn't argue with us, because of your distinguished service on the Committee. You must have served under Bob Barnes.
So Ron, would you stand up, and I will give you the floor if you want to make any comments. You already made -- it may have been short, but it may have been the most important comment in the whole video, about, we could reform the health care system and we wouldn't be any healthier. So that is what we want to avoid. We want to make sure we are tracking with our data.
DR. BLANENBAKER: You mentioned short. I have had short jokes all my life, but I have to tell you that as I have listened here today, several things come to mind, but one of them reminds me of my Hippocratic Oath, foremost, do no harm.
At the 50th celebration, you probably don't remember this, but I was asked to make some comments. I came up to the podium, and here was this little step stool down here. I looked at it and I said, I don't need that. I didn't realize that following me was Donna Shalala, who was the Secretary, and she did use it. So it is a little bit embarrassing working in that way.
When I became chairman, a number of us as committee members were thinking about the importance of the Committee and whether it made a difference. What we said to ourselves was, these are busy people and they have got other things to do other than come to Washington and talk about things and leave and have nothing change. So we spent a lot of time trying to make a difference.
I have to tell you, after having attended the Colloquium, which sounds very impressive, there was a Colloquium, today it is clear that the Committee does make a huge difference. I am especially impressed with the fact that you are willing to discuss the issue of misuse of data. I think we do have a responsibility to do no harm. As we are creating data, we ought at least try to give thought to how it might be used or misused.
There was a lot of discussion today, and I was glad to see that. But I think the most important thing from my standpoint is, back when we were committee members, we were thinking, does it make a difference. There is no question in my mind today, it does make a difference.
Thanks.
MS. GREENBERG: Thank you, Ron. It helped to get some things in legislation, so it made it harder for the HIPAA and the MMA and some more things. But I think it raises all ships.
I think the other things that the Committee has done that weren't in legislation perhaps get more attention now than it did in the days when we didn't have as much focus on health information and health IT.
I have this vivid memory of being in July Miller Jones' kitchen in West Virginia after an Executive Subcommittee retreat. She was probably saying goodbye to some people who were leaving, and Ron said to me, I am going off the Committee, what do you think about Judy as the next chair? I said, I think that is a great idea, and of course Judy did follow. Obviously we didn't make the appointment, but other people thought it was a great idea too.
So Judy followed. You went off the Committee in '91, I think, and then Judy followed as the next chair. Judy is well known in Washington, is the head of the National Health Policy Forum, so brought an important policy perspective to the Committee in the '90s when we were looking at health reform yet again.
So Judy, we also value you very much in your continued role in the health community and health information community. Would you like to say a few words?
DR. MILLER: This is a family affair in many ways. It is a blending of folks who have passions all related to data and information and how do you use it. When I came on board the Committee, it was, let's be honest, fairly moribund. It was having trouble. It was a difficult time in the policy arena. It was a difficult time in the political arena, and there were a lot of machinations going on even within the Department.
So looking back and seeing what has happened since is a real pleasure, a real pleasure. So much has been accomplished. But there was talk at that time of killing the Committee. I think it would have been a tremendous loss.
I started out my career at IBM. I was in the Information Systems Division for Health and Education. Larry Reid was our customer, the problem oriented medical record. I was a 20-something year old kid, listening to this guy lecture that every doctor would do better care if they had a problem oriented medical record and would put it on a computer and so on. Not many doctors would think the way he did, dissect problems the way he did, use information the way he did. That was a hard sell for us, to sell systems based on that.
But I then went into policy work on the Hill and then for HHS. Throughout it is kind of ironic, moving from that experience. Maggie Mahoney introduced me to Paul Dunstan and Carl White, who said that you want to improve care in this country and services in this country, you need to know a whole lot more than what the doctor orders and does to them. You need to know how they move throughout the system. You need to know the influences on their life, and all of that is coming together as we are talking about these systems.
I wouldn't be true to Judy in my image if I didn't leave a challenge. I think this is a very exciting time, but I am not naive about what lies ahead. We have an election coming up. We have a lot of people who are running against health reform, who are running against a lot of the things we are talking about here. They are using fear of Big Brother government in the sky, of information systems, to scare folks.
I think the challenge that this Committee faces and could do a world of good on is telling people how good it could be if we used our data better. Most patients hear about data when they go to the doctor and they get a HIPAA form to sign, and they haven't got the foggiest idea of what it means. They can't even get a good answer from the person who gives it to them. Most doctors frankly don't know why the HIPAA form was developed. They don't know how his information is going to help them. They hear about how it is going to be used for economic credentialing and other things. There is so much good to be done. With the ONC coming into being and all the work that they are doing, I think it is time for NCVHS to rethink its role. That is almost a regulatory agency, this is an advisory body. This is an empowering body. This is in some ways a visioning body. I would love to see you get more empowered, but empower the public. Empower doctors, empower patients.
I think up until now, the Committee has spoken mostly to the aficionados and the needs are changing. If we don't get doctors and patients and the family caregivers to appreciate how important all this information is, somebody is going to manipulate the system and put the brakes on. That is where I would love to see this Committee really do its very best.
So my best wishes to all of you, to all of the staff who brought us so far. Like I love to say, more to be done.
MS. GREENBERG: Judy did remind us in Charlottesville that while we are celebrating and patting ourselves on the back figuratively to some degree, or just enjoying being here, that we have a lot of work left to do. There are things we haven't succeeded at.
This education area, I couldn't agree with you more. It is so important. We had a hearing on Tuesday, the Privacy Subcommittee, about sensitive health information. That came up so many times. Some of you guys who were on the Committee then, we tried to come up with some kind of plan maybe or activity for public education, and we didn't quite know how to pull it off. But it is certainly something that I think we can return to, I couldn't agree with you more.
This has a storyline here. After Ron and I started thinking that Judy would be a good chair, then we were having some hearings and Judy said, I think we should bring Don Dettmer in, because he has gone a lot of interesting work, and we would like to hear about what he is doing, doing work with the electronic health record, then they called it the computer based patient record. He is doing work internationally.
I think what Judy described before, not that it was a fault with the Committee, but things were kind of in disarray. The Committee was at risk of potentially going under. I think Judy was very effective at working with outside constituencies, and my boss and others worked within the Department to try to show why it was important that the Committee continue, and the rest is history, as it were.
So we brought Don in. You testified to the Committee. If you don't want to be involved with the Committee, that is your first mistake. Say no, because before you know it -- I can't tell you the number of people who testified, and Harry was one of them, who ended up being on the Committee and even chairing the Committee. If you are a winner, we don't like to let you get away.
So when HIPAA came in and then it was time for the next generation of members, Don was brought in as the chair. That was about 1996. Don has a distinguished career as a surgeon, as a thought leader with the IOM, et cetera, international experience, but he really brought all that together in this very important transition period, after HIPAA was passed and so many new things were expected of the Committee.
So Don, would you like to say a few words?
DR. DETTMER: We all know her well enough, she wouldn't let me say no. No, actually it is nice to stand up as I saw this and then also looked at the faces in this room. I owe so much to so many of you for what you have taught me and also for the friendship and leadership. I can always tell when I am feeling nervous about standing up and saying something, I have that feeling. It is great to feel all that.
I was also involved ten years ago when we had that celebration as well, and it was just as warm and moving as well.
I want to pick up on a few of the things that were said. A difference is a difference if it makes a difference, somebody once told me. I think this does make a difference. I was excited to see where things are headed. I think that is really great.
One of the things that didn't make the cut but did make the Colloquium was quite a bit of discussion -- it was echoed, but not fully -- on the importance of relating social determinants of health. I think it is in that whole issue of reforming, the way we look at what our business is, if you will. I think the fact that that is well into your thinking in this next cycle is pretty exciting for me to see, because it was something that we resonated quite a bit about in the conversation in Charlottesville.
Also, just to pick up on a couple of other things that came up in the comments. I think the issue of the global standards thing is also timely. I think that is quite important, and a lot of opportunity there. Of course, Marjorie with Betsy Humphries and a lot of other people have given great leadership and continue to do so. I think that is certainly exciting.
I think it may be smart, because the Committee and the staff has had tremendous productivity in the last few years. That was the other thing you saw. The question is, can you change some methods to leverage yourself more. Is there a possibility that you could farm out some work product groups to some other folks.
Just to make a couple of comments -- I sound like I am still chair -- but the point is that perhaps to leverage some of this, focus it on your areas, and then they could come in and report. I don't know, just thinking.
My point is, Secretary Sibelius has said that she wants to have her decisions based on the science and evidence. That is a great thing to have the Secretary say to everybody. That ought to mean some resources can fall. I think it sounds like that is a key audience without question, as John said. The Secretary absolutely is a key audience. Once we got the attention, boy, things did start moving, there is no question about that. So I think that is key.
The other thing, I had two other things down, and this is why I want to talk about this way of getting more work done before I then try to give you more work. Two other things that I thought were pretty important that were talked on and Don said a little bit about. That is the issue of the research agenda, and also to some extent development agenda. There is only so much you can do, but maybe you can restructure how to do it and pull a few more rabbits out of the hat.
I think the time is right. There is a cautionary story in this too I want to add, since you were kind enough to give me the floor; you shouldn't have done that. We talk in this country about HIT, but the fact of the matter is, when most people go to see a health worker or something, they are really interested in seeing you, they are interested in communication. They are not so much interested in information. They want to see a record of that communication, but they really want to make sure they connect with people and communicate.
Most of the world outside the U.S. calls this HICT, health information and communications technology. It really isn't about the T part. Standing here now as a reborn informatician, informatics is about the carbon cycle, how do you use the information. That relates to your education issue.
I think there is an education challenge, too. So I think the research agenda is an issue, but I think an education agenda is there too. I think it came up in your comments, Leslie, about what should the public know about this, as well as others. So it has come up.
One other comment on the research agenda. Now we are moving into health care it looks like, with this reform, and 35 million more people. What are some markers that could help us test whether these things are being done and we are getting more good than bad out of it? Obviously health services at some point do make some differences clearly.
I think that is the agenda against which I would look at it. I think if you made the argument, we are embarking on an historic thing here, and we really do deserve to know on the evaluation side where this is going, has gone and so forth.
Anyway, still a tremendously vital committee, dealing on issues that are near and dear to a lot of us. So I am delighted that you are coming in, and it will be a continued wonderful progression. Harry, congratulations on all the good work that you have done.
At this point, thank you very much.
MS. GREENBERG: Thank you, Don. When people retire from the Committee, we do give them a letter and a certificate. It always says, from the Secretary, he or she always says, we hope we will be able to call upon you in the future. You see we take that very seriously, so we value that.
When Don came on the Committee, John Lumpkin and Simon Cohn, you all came on at the same time, 1996, since the HIPAA clash. Don decided at that time, by about 1998, that it didn't look like the U.S. was going to put any money into electronic health records. They were putting a lot of money into it over in the U.K. So he told us that he was moving across the pond. We were really disappointed to see him leave, but as you see we found ways to keep him involved.
Fortunately, John Lumpkin was right there, ready to pick up the mantle. John had also been health officer in the state of Illinois, I think maybe the longest-standing health officer. More recently he is with the Robert Wood Johnson Foundation. We greatly value your wisdom and your involvement and your leadership, and we would like to hear from you as well.
DR. LUMPKIN: Thank you, and great appreciation to Harry and to Justine for carrying on the great tradition.
I actually just had three points to make. The first one starts off with the conversation today about community health data and new opening sources of data. It reminded me of my favorite quote from Carl White, which is that we have been able to amass huge amounts of data untouched by the human mind.
Taking that one a step further to some of the work where we have demonstrated what can happen when you take data like that and you begin to look at it. One of the longstanding projects to do that has been the Dartmouth Health Atlas.
Perhaps the most critical lesson that can be learned, and no one who argues against the Health Atlas argues against this, that is, that there are regional variations in the delivery of health care and the outcomes. I think this is my first point, which is a charge to the Committee. Health care delivery and population health is not a national issue, it is a local issue. The ability to effect change at the local level is dependent upon the ability to have data at the local level.
So if I am operating a local health department and I want to do something about the smoking in my area and childhood smoking, I can look at the behavioral risk factors survey. All it will tell me is what was the rate at my state and maybe what was the rate at counties like me.
So until our data enterprise can get to the point where it can deliver data to people that are engaged in effecting the change, whether it be at the population level or at the practice level, we won't be able to effect improvements in quality that we need.
I'll skip the second one.
The third point I have is a future-looking point, another one. I have to admit, this is the first meeting I have been to in awhile where, when I went onto Hoot Suite and also checked Twitter, I looked for hash tag NCVHS, there wasn't anything. I'm not used to going to meetings where people aren't Tweeting, or using some other social media.
There is an incredible revolution that is going on that is going to have an impact on health information technology. I think it is a two-edged street. One is that the message of the important work that this Committee is doing needs to go out, and it needs to go out in an open way in which people can understand and access that information, and that includes social media. So I would encourage you to think about that in future meetings.
The second part of this revolution is, one of the perhaps most powerful pieces of computer software, the most powerful piece of computer software in my house, is not sitting on my desktop. It is in my son's room. It is hooked up to his television, and it is a game console.
I was recently at a meeting where I used the video processor in order to mimic the flow of cardiac potential waves through the heart, and to demonstrate how arrhythmias occur, just using from an X Box the image processor. I think one of the universities here took 19 of them and put them together in play stations and created a supercomputer. Incredible things going on in the world of gaming.
One of our major programs that we have is one called Games for Health. This is where the interface becomes very important. At the University of Vermont, they have a device for people with cystic fibrosis. They blow into a tube and it actuates a game. One could imagine someone getting a prescription for a game. When we think about the interface of how data can flow, that same game which they use to not only diagnose but also to give them therapy at the same time, could link to your personal health record, could link to an electronic health record when they are treating caregivers.
As we begin to think about all the interconnectivity of this world, between what is going on with games that people play, whether it is with the We Fit or some other device, and their source of health care, the importance of being able to enable that data to flow where it is most needed so that decisions can be made at the right time by the right people is part of the purview of this Committee. I encourage you to take that up.
MS. GREENBERG: Thank you, John, you never disappoint. I did put on Facebook about this meeting, but I haven't Tweeted yet. I may have to rethink that restriction in my activities.
After a very distinguished service as the chair of the National Committee, John's service, we then get to the person who would have been our last former chair, except we now have yet another former chair, Simon Cohn, who also joined the Committee in 1996, coming from Kaiser Permanente, and very involved in national and international standards. John and Simon and then Harry all chaired the Standards Subcommittee.
I think just from what Ed told you about the history of the Committee -- and I am very impressed that you read it, and Susan Kanaan especially appreciates that, Ed -- but the Committee has been about standards from the beginning. It has been about standards, it has been about population health, it has been about all of these things, and it has just come out in different ways.
Was it in 2002 or 2004 that you became the chair, Simon? It is in the history there. Simon was -- other than Jeff who was appointed by the House of Representatives, I think the first person in my tenure with the Committee who was appointed for a third term. So in that appointment he became the chair of the Committee, and he retired a few years ago when Harry took over. But we have also stayed in touch with Simon, it doesn't surprise you, and we would like to hear from you too, Simon.
DR. COHN: I think I am batting cleanup here. First of all, I am really disappointed. I was looking forward to the title of Immediate Past Chair. I think I am just going to have to become one of the former chairs, certainly by the end of this meeting.
I wanted to add my congratulations from all the other chairs on the 60th anniversary for the NCVHS. It is not NCVHS, it is the Committee, for the purposes of today it is our Committee. As I look around you all have been touched by it, you have all been part of the community, if not in the last ten, certainly in the last 14 years in my term. So I think we have been in this all together and even longer as I look at some of the past chairs.
Jim Scanlon talked about the fact that the group is very hard working. The shock and awe slides talking about the last ten years are an important reminder of that. But the one part that I did want to reflect on for a minute had to do with the quality of the work. It isn't just the quantity that has come out in the last ten to 14 to 20 years, but it is the stellar quality, the clarity of the words, the clarity of the thought, the succinctness and understanding of the recommendations, that has really made a difference and sets the NCVHS apart.
I think we see this reflected by the fact that the Secretary -- if we look at the percentages of recommendations that have been implemented over the last ten to 15 years, we see a very high percentage of all those recommendations finding themselves if not in regulations, into law. I think we can all reflect on that.
As Jim would tell us, sometimes it doesn't happen in one day, but it certainly has happened with an amazing frequency.
Having said that, I would say I also want to acknowledge the current committee. Those of us as past chairs hope that the Committee will continue this tradition. I think we have seen the concept paper, I am very heartened. There is a very bright future for the Committee going forward.
I do believe that there will be some need for prioritization. It just seemed like there were an awful lot of bullet points there, but I think that will be in the evolving activities as you move forward.
Having said that though, I do want to make one or two points here. I want to throw in, just like John did, a couple of thoughts and recommendations.
One is, on the flight out I had a chance to review the last couple of years of letters also. I was very impressed with the ICD-10 letter that came out. I was just reflecting that it is very seductive for a committee like this to look towards the next thing. I am reflecting on the last ten or 15 years of our work, recognizing that the NCVHS has always been a thought partner with the HIPAA implementations.
I will tell you, this ICD-10 implementation is not going to be easy. It is going to need all of your help and monitoring and advice to the Secretary. So I am hoping that there are going to be lots more letters and lots more touching bases with industry as we move forward, because as we know, this is not an easy thing. So that would be number one.
The other piece was something that we talked about at the Chairs session. It had to do with communication. John had his take on communication. I have to say, from my view I am a little more open in how communication should occur, and I think there are many ways. But I do think there needs to be some attention not just to packaging -- the packaging is wonderful in terms of how the reports are coming out now -- but exactly how it is being communicated. Twitter may be one answer, but there have to be ways where the Committee is reaching out to the public.
At the end of the day, and I would once again disagree with Judy about politics, I think we are in the influence business. Carl White said the same thing. In anything we do, you need to be thinking about how this is getting out and touching people. Actually I see Judy and I finally agree on this one; good.
So having said all that, I just want to take a minute and acknowledge Marjorie and Jim. Being a past chair, they make us all look good. We wouldn't get anything done without them. So thank you. I just want to thank the liaisons. I see Mike Fitzmaurice in the back there, as well as the staff in terms of all of this stuff. Your dedication is noteworthy. Speaking as a past chair, we extremely appreciate it.
The final thing I wanted to mention, I had something to do with Harry coming on to succeed me, and I was very appreciative of the work he has done. But I really have not had an opportunity publicly to acknowledge the great work you have done over the last two years. I think you have handled the NCVHS in an extremely volatile environment, you have handled it very capably and very nimbly. I think we all know in these periods of change, having the Committee successfully emerge from all of that is not an easy thing. So I really want to acknowledge you for that. I think you have gone a super job.
Justine, I think we are all looking forward to her becoming the next chair. I am reminded of the times that we had spent working on the secondary uses report. Sunday afternoon calls, Harry, myself and Justine, as we polished the words, polished the recommendations. When we were done, I would still get calls from Justine on Sunday, we were still having conference calls. I think this attention to detail will hold you in very good stead as you look forward to this, so congratulations.
With that, I just want to acknowledge everyone. It has been our Committee, it has been 60 good years, and I think what we are all seeing is a very bright future. So thank you.
MS. GREENBERG: Thank you. During Simon's tenure the productivity was incredible. You saw some of those lists of reports and all of that, and the ad hoc groups which Simon convened. There are no slackers on this Committee, that is for sure.
Jim, would you like to say a few words? We heard eloquently from you on the video, but you are here in person.
MR. SCANLON: I had a chance to say some things already in our very nice video, but just very briefly, let me describe what I think of the philosophy we have had about the committee, Marjorie and I.
We always looked for the best members we could. We deiced to find the best chairs and leaders we could for subgroups and for the Committee itself. We tried to give them the resources, and we tried to find the most excellent staff we could within HHS to support them, and then we let them go. The staff was not trying to dominate the Committee's thinking; we wanted the interaction and deliberation of the Committee, and it was marvelous and superb.
Simon was exactly right, it wasn't just the productivity in terms of ideas, concepts, reports and recommendations. It was the quality. In the case of HIPAA, many of the recommendations were pretty much taken as given. Everyone knew they represented a fair process, an open process. They knew that if they gave the Committee a task, the Committee would put together the consensus and work it through. There were no hidden agendas that would pop up later when you decided you were ready to implement policy.
Then there were more global vision documents at the other extreme. Again, I think the Committee has a perfect mechanism and a chemistry for being able to get the best ideas not only among the members, but among the industry and the public health community, the research community and so on as well.
The other factor in the Committee was, we always had between the public health data per se focus, the privacy and security focus and the looking forward on technology focus, we always had a balance, so that we had very realistic recommendations. Sometimes I know the Committee members probably felt we were spending too much time on technology, too much time on standards, but after awhile, I think everyone saw how it all fits together and much more sophisticated, subtle and nuanced the recommendations were because of that.
So again, I just want to thank you all for giving of yourselves over all this time. I hope we have another ten years at least of the productivity and the fun we have had so far.
Agenda Item: Acknowledgements and Closing Remarks
MR. REYNOLDS: We are near the end. A lot of people kid me about doing a lot of sports analogies, and I am going to use another one, since there is a big basketball game tonight. Everybody has been talking the World Cup. I don't play soccer, so I am going to step away from that.
The thing that is most interesting to me about NCVHS, the Lakers tonight, if Kobe Bryant got hurt, the game would be over. When people come and go from NCVHS, there is still going to be a championship the next year. That is why I think is so neat about the group.
As I move on to a company that talks about a smarter planet, what better place to learn than NCVHS. It is exactly what you do, exactly what it is about. Simon and everybody is exactly correct, this is the Committee. Certain people have titles, certain people have opportunities, this is the Committee, everybody that is in this room and everybody that helps. I would add, the people from ONC. I would mention the people from AHRQ, everybody else. It is about making a difference. It is about grouping up to make a difference. It is about all having the same uniform on, even if times you knock a friend down about a subject. We have been through a number of things throughout my time as a Committee, and I couldn't think John enough for welcoming me and having me understand what it meant, and then Simon mentoring me. Thank you very much.
We are lucky. We have got a great one coming behind me. So there is good news and bad news. The bad news is, the former chairs just dropped in what people think about, because I am joining them. On the other hand, the Committee is on the rise as it goes along.
Justine has been really fun. We came on together, worked under the tutelage of John and Simon. Watching Justine grow and with what she is doing now, being part of a team that has completely turned around the hospital system in Boston, it has been glorious to learn from her and watch her and so on.
So with that, let me introduce the incoming Chair of NCVHS, Justine Carr.
DR. CARR: This really is a family. That was the first phone call I got from Marjorie, saying, hi, you are on the Committee, it is a family. Then she proceeded to tell me about, we will have dinners together and we will see our kids grow up together. I was like, what kind of community -- it didn't look like that on the Web. But it is like that.
Honestly, I look around the room and I think of all those car rides to dinners, great restaurants, when Simon was here convenient restaurants. The stories about, my son went to Cornell and you can read about him in the transcript, when he graduated two years ago, all these connections. It absolutely is about family.
We do a lot of important work, but I have to say that we all feel the sentimentality that goes with this. My grandparents came from Ireland. As it turns out, my daughter lives there, my son-in-law was born there, and now their little boy who is four months old is also from Ireland.
When Simon left, we took some liberties with the Irish Blessing. With Harry we will play it straight, because we took a lot of liberties last evening. I want to just acknowledge a little bit about Harry. So much has been going on in his life with his family, his extended family. Lightening struck his house yesterday, and he has been here, trying to get the insurance company and the electricity, the cable TV, the Internet, the videogames, all that set back up. He is here, he didn't miss a beat. Okay, he didn't take my call yesterday morning when I was late, but other than that. But that is the kind of person he is, he soldiers on.
He called me one morning. He was having surgery. He said, hi, I'm having surgery, so if anybody is looking for me, could you take that call? I'm like, what is going on? But that is how he is, devoted in every way.
So as he moves on to this very exciting adventure where he will again make a difference, because Harry always talks about making a difference, I think of him on even more airplane rides, going all over the world. So I will be sentimental and call upon the old Irish Blessing which says, May the road rise up to meet you, may the wind be always at your back, may the sunshine warm your face, the rain fall soft upon your face, I guess. Fields. He warned me about his handwriting. And until we meet again, may God hold you in the palm of his hand.
MR. REYNOLDS: Thank you, everyone.
MS. GREENBERG: We are adjourning to a reception. The reception is starting shortly.
DR. CITRO: We are just delighted that the Committee on National Statistics and the National Academies could host this event. We have several other meetings going on simultaneously, so I have been running around. But I could sense the collegiality, the hard work, the service that you all are giving, not just to the Department of Health and Human Services, but to the nation. I certainly as one citizen of that nation thank you.
I did want to welcome you to all stay for what I think will be a very nice reception. You are going up one flight of stairs to have your pictures, and then you go up the next flight of stairs, and there is an atrium where in the daytime our cafeteria is, but there will be tables and quite a nice set of things to nibble on, so you can talk and share more of what is clearly a set of wonderful experiences that you have all shared over the years.
So thank you so much.
(Whereupon, the meeting was adjourned at 4:55 p.m.)