NATIONAL ACADEMY OF SCIENCES

DR. RON BLANKENSHIP: As it turns out, it was really one of the best experiences of my life as far as healthcare goes.

To be honest with you, when I first became a member of the Committee, it was uncomfortable. It was almost like there was an agenda and any departure from that was not accepted. I can remember Dr. Larry Green, who was also a primary care physician, and I talking about the need to pursue disease prevention and health promotion data because we thought it was very lacking as it was.

It was almost like we were the outsiders trying to change something on the inside. We ultimately, when I became Chairman, did accomplish that, but it was not easy. It was like the Committee was very rigid and focused and unwilling to take on new and different issues.

But it was going through a transition. It was going from that time that it was inactive to being something really serious that people needed to contend with so that is understandable.

I feel good about the fact that we raised the issue. I feel good about the fact that we raised the issue to the likes of the Department of Health and Human Services, to HCFA, to the National Center for Health Statistics and others, that when you are collecting data, you are not just collecting data because you are getting information to people who are going to use it for research, development of policies, and so forth. You should be concerned about the quality of that data and how it is going to be used.

We raised the issue. I think we sensitized some people and organizations to that. I think others will have to answer the question of how effective that has been, but it is probably something that the Committee is always going to be concerned about.

DR. JUDY MILLER-JONES: I am told by those who have looked back at our tenure that we did several things. We did change to be more policy focused and more departmental focused in many ways.

I think that, frankly, there was a point at which the Committee almost died and we did keep it alive. I think that we tried to put it on sounder footing so that it could be both overarching in its viewpoint, but then look at specific areas of need. I would hope that we set it up in a way that - positioned it in a way that it could move forward.

Frankly, I think one of my proudest accomplishments was recognizing the limits of a layperson, as a Chair, and suggesting that Don Detmer, a physician and informaticist, should become the next Chair and take it to the next step so that they could handle HIPAA, in all of its intricacies, both from a patient and privacy perspective, as well as from an administrative simplification perspective, in looking at the growing use of electronic health records, personal health records and electronic health records for all of the organizations who would be delivering care. We are still not there yet, but we have come a long way.

Policy depends on good information and good information can come out of good data collection and analysis. Having worked at IBM, having worked with researchers and clinicians, I really felt very strongly that good data –- not just the collection of data, but its analysis -- was going to be key to improving the policy process.

So this was almost an offshoot, in a way, of what I was worried about in my day job. In a sense, it was a labor of love and an extension. I think there is a much greater appreciation that how well patients know how to use the healthcare system, are able to make their way through it, and benefit from it, depends not just on the medical care that they receive or the long-term care, but where they live, their level of education, their opportunities to exercise, to eat better, and so on.

Our concerns for, again, utilizing all the Departments’ data resources and analytical capacities, to understand how we both treat people, but how we empower people to use healthcare, how we look at the neighborhoods in which they reside. I do think that choosing smart people is important, knowledgeable people is important, but also cooperative people who can build relationships.

I think at times the folks who help choose committee members may not appreciate all of those things. You can get somebody who is really smart, really knowledgeable, but they do not play in the sandbox very well. I know when I was Chair, there was a tendency to want to go after big names with expertise, but not necessarily people who would actually spend the time and do the hard work and be able to communicate well and to form these working relationships -- these partnerships.

DR. DON DETMER: So the two main things, I think, that happened in my tenure was to create a vision and we created a visual that had three over-locking circles of population health records, personal health records, and patient health records or the record of care of hospitals and so forth.

What we were arguing was unless the country organizes its thinking and its architecture so that these kinds of records, which, in terms of personal health records, really weren’t even around to speak of -- we anticipated that -- and we said these architecture ought to be done so that we can get benefit from the interconnectedness of this -- the interoperability and connectivity of these different sets of records, so that we actually could do a much better job both at the personal level for citizens looking after their health, but also at the community level, but then clearly at the national level, too. I would say also to some extent relate internationally, as well, although at that time, there was not as much international work going on.

I think whoever is the leader, they have to both adjust to what is happening in the Committee, but they also need to keep an eye on the external issues and try to keep the focus of the Committee so that in total its program is looking after its total charge, and not just focusing off in one or two areas.

That sounds probably not that hard to do, but you can get pretty consumed in some of these issues where it is very visible, very hot, lot of interest, and a lot of media interest, lot of people showing up. It can, at some point, start looking like the dog instead of the tail.

So I think one of the roles of the Chair is to really keep a pretty good sense of the total picture and also encouraging staff to share with you some of their observations because they have had, you know, with Jim Scanlon and Marjorie Greenberg and others, a lot of tenure. They also have a sense of the pulse.

Some of the dynamics about the Committee over the years, probably its main strength is that, as I said, it has been around a long time. Just the fact that it has actually been part of the landscape as one point really is a pretty powerful statement in its own right.

I think from time to time there are issues that change. I think, for example, at the moment is a really fabulous time for the Committee because the country is embarking in a major way literally, to help manifest what we were talking about, in terms of this national information infrastructure, ten years ago.

It just so happens I was lucky because I had, through my education and career, an opportunity both to deliver individual care, also to look at population care, also to look at how do you manage hospitals and systems and at the same time influence policy.

But the story needs to come out in pretty clear little pieces so that you can sort of act on that. That is a challenge. A Chair’s job is to sometimes cheerlead other people’s ideas that help do that and then at other times I think to pull it all together because it is a mosaic. It is how do you take the little pieces of tile so that when you stand back you are actually looking at something that is coherent, and you say this is good, this is in the public’s interest.

I think it is also the combination of government, now, and some of these agencies teaming up with a lot of universities, UVA, a lot of universities have activities going on all over the world. But they tend to sort of be one off and not necessarily say what kind of difference are we making in aggregate? Well, that starts looking to data. That starts looking to vital and health statistics. That starts looking to measurement.

So what are you going to measure? What are good measures of starvation? What are good measures of shelter and so forth? And what proxy measures in terms of health status, are you likely to see if those things are not met? Well, those are absolutely the kinds of questions that the NCVHS working with WHO and others, should be all over.

So we should be looking, I think, not only to how we can measure those in our own society, but how we can contribute to the international setting of such standards. I think that is part of this opportunity that I am seeing right now.

DR. JOHN LUMKIN: I think the biggest challenge that we faced at that time was how do we merge what was our new charge, which was dealing with healthcare information technology, and our long standing charge of more broader population health activities.

We worked as a Committee to do what we called the left brain and the right brain work, and then to try to merge those two. To understand that, in the words of Chris Gebbie, who I was at a meeting in the early 1990’s and she made the comment that really stuck with me. She said, you know, public health and healthcare all use the same data, they only look at it differently.

One of our big challenges was that we had a vision. I think those of us who were on the Committee had a vision, but I do not think our nation had a vision for what health information technology could do in the broadest sense, not only just for healthcare, but for health across the board -- for prevention, for public health surveillance, as well as delivering care in communities where people get their care.

One of our charges we took on as a Committee, we were not asked to do this, was to develop that vision. It was a document called Information for Health.

I thoroughly enjoyed the time that I spent on the NCVHS. I think I left NCVHS as a different person. Being the Chair of the National Committee for Vital and Health Statistics is a wonderful experience. It is also a big challenge.

I think the key success factors for any Chair for the National Committee for Vital and Health Statistics is to understand that there is a division that needs to be bridged between health and healthcare, between population health issues and public health in the healthcare system, and that by bridging that both systems can function much better.

Second, I think it is important for the Chair to realize that they play an important role with the Department. They need to look at that as being a partnership in moving forward the issues related to expanding and improving the adoption of health information technology with health within the largest context.

Third, is that it is important for the Chair of the Committee to understand who their members are and to try to bring out their strengths and have members of the Committee be engaged in not only setting the policy and setting the agenda and doing the strategic planning and determining what role the Committee should play, but also getting them to bridge that gap and getting those who may come from a public health or a population health background, engaged in some of the aspects related to healthcare and vice versa. Also to understand that there will be tensions on the Committee, but to try to moderate those, to mediate those, and to focus in on the tasks at hand, which really is to transform health and healthcare.

DR. SIMON COHN: The Committee is more than just a consensus building activity. It is actually an idea development activity, typically. It is not that we are just trying to seek consensus from the industry or from a larger community, but in all the work that we did, at least under my leadership, it was really taking a lot of disparate ideas, some of them which were really not very well developed, and turning them into something that the community could embrace and move forward on.

Reports that we did related to personal health records, which were really synthesizing, I think, important concepts, as well as posing important questions -- the work we did around the nationwide health information network, the functional requirements. We see now this beginning rollout of the nationwide health information network, which I think is based on a lot of the early work that we did. So this work was, I think, very germane and pertinent and, as usual, a couple of years before its time, which has been another piece of what the NCVHS has, I think, been known for -- being able to look out, helping to forge a path for the country as it moves forward.

My vision of the NCVHS has been that we are really helping to set the policy, helping to create the longer vision of what needs to happen, and doing, I think, the hard work of trying to develop the appropriate ideas and consensus around the ideas and vision.

The NCVHS as an expert body has never been, really, a political body. So, as a lot of the work we have done and ideas that we have developed have moved from being good ideas to needing political support. I think it has been very appropriate for Secretaries, and of course now Congress, to begin to add additional structures to try to move the work forward. I see that as sort of a normal transition that I think needs to occur.

Population health is critical. I think every Chair that you talk to is probably going to identify population health as the area that we have all been driving towards in improvements in population health. I think, as you will see -- I know you will talk to Judy Miller-Jones tomorrow -- we all have taken sort of different approaches based on the tools we had and what was important to the society, the country, and the government, at the time.

I know the Committee, at times, being the National Committee on Vital and Health Statistics has been primarily involved in classifications in terminologies and datasets, maybe from a time before I was actively involved with the NCVHS.

When I came on initially, what the vision was is that if we could get more appropriate data standardization, leveraging some HIPAA standards, and getting more standardization around some of the administrative and clinical terminologies, ICV, CPT, as well as the clinical terminologies like SNOMED and LOINC, that that sort of standardization would enable increased computerization and make people willing and more confident to invest in that sort of computerization and, as a result of all this, begin to standardize a lot more clinical data.

As I look at where we were back in 1996 versus today in terms of the extent of EHR implementation, and the amount of standardized and clinical data, which now, of course, includes lab and pharmacy and many other data sources, I think we have done a good job creating that sort of infrastructure that then can be used through analysis to help improve the health of a population.

It is one thing to be a thought leader. It is another thing to bring the country along with you, in terms of having everyone begin to say, yes, that is the right thing. I think documents and reports such as we have done with the National Health Information Infrastructure, is an example of something that many people would not even think it is new thinking at this point, because it has moved so much into the fabric of everyone’s thinking about how we should be moving forward with the Office of National Coordinator, the Nationwide Health Information Network, standards, policies, privacy, and confidentiality.

All of these things, which we were clearly very much ahead of our time, but once again, that is a mark of the Committee. And I think the mark that will, I think, enable it to continue successfully into the future.

MR. HARRY REYNOLDS: The political climate, when you talk about the environment, the political climate is dramatic in the subjects that NCVHS deals with. It is dramatic. You have things like an awful lot of the political discussion right now is focused on the health industry. The health industry goes all the way from care to systems to payment to who is covered to everything else. That is obviously the main environments that NCVHS lives, plays, and recommends.

The whole explosion of the health IT industry, things like meaningful use, some of the other things that are going on out there where there is up to $36 billion dollars worth of stimulus money that is out there to change the health industry. The standards that relate to health IT, the measures that come out of that, the way to improve patient’s care, the way to do everything is wrapped up in that and obviously we have been in that sweet spot for quite a while, it is just now that it is getting more money, structure, and focus out of the political process.

Health reform, as it continues even today, as bills continue to move through, changing the ecosystem. So that is the thing I think would be significantly different is that the entire ecosystem within the health environment is under change right now, under consideration, under review, and under things like that.

We have a great relationship with the Office of National Coordinator, which I will mention a number of times throughout, here. That is another part of the environment that I think has changed quite a bit. NCVHS, most people might not know, we actually recommended that a Office of the National Coordinator type thing ought to exist. Now, with the stimulus funds through ARRA and everything, they are becoming a significant focal point.

We just finished this data stewardship primer. If more and more people with more and more information is going to be available to more and more people in more and more ways, then let’s make sure there is some kind of structure under which they touch yours and my information and everybody else’s information, in a way that we can used it for the common good, but we do not use it for any issues that would put somebody at risk for the wrong reasons.

If you just take the subjects, quality, privacy, and public health and population health, to many people those are subjects. They really are the lifeblood of whether this is truly going to be successful.

From a privacy standpoint, the individuals have to know that it is okay. This is a complicated environment and they have to know that it is okay. From a quality standpoint, we do have to be making a difference. Not just capturing information, we have to be making a difference. From a population health standpoint, one of the things I will say again, as to why it is fun to be Chair of NCVHS and why it is even fun to be involved in NCVHS, in my day job I cannot touch many people. In this job, because of the team, because of the process, and because of the focus, you can wake up in the morning thinking you can make a difference.

MS. MARJORIE GREENBERG: Well, Susan, this is a delight for me, as well. You and I have worked together for now 20 years almost. We both have a passion for the Committee and its history and its future. I think that is what yesterday was really all about.

It was thrilling for me, I would have to say, professionally and personally, to have this opportunity to bring together the current Chair and five former Chairs and, of course, the whole event inspired by another former Chair, Dr. Carr White, down here and in Charlottesville, which is such a historic place. Last evening, we had dinner in a room in a lovely inn that dated back to the 18^th century -- Revolutionary War.

It seemed so appropriate because we were celebrating the history of the Committee, which is now 60 years old, but also celebrating each of the people, present and not present, who has made the Committee, I think, a positive force in the field of health information policy.

Then I realized, that is phenomenal that all of these folks really do not have a clue what we are going to do with them, but they accepted and came anyway. I think it shows the kind of collegiality and sense of common purpose and mutual affection, actually, not only regard, but affection that we have for each other. That just rang through all day yesterday for me.

John Lumkin articulated it when he was a Chair, in a way that I think others have, as well, but it particularly made an impression on me. He said this Committee is a partnership between the membership and the staff and the Department, but the people the Department has selected or who have self-selected themselves, in some cases that has happened, to support this Committee.

We used to talk a lot and it came up again yesterday about the strength of the Committee being this kind of bridge between the public and private sector. I heard that language come up yesterday in our conversation, too. I do think that is true.

There is one more thing I wanted to say about the Committee. So there is the history, there is that bridge between the public and private sector. Some advisory committees, you know, are actually chaired by the Department, people in the Department, and have members within the Department. I think years ago maybe the National Committee did that, but ever since I have certainly been involved with the Committee, there has been a recognition of, look, we know how to access people in the Department.

We, as patients, benefit from what we have learned from population health. We do not want to be treated each time as a totally unique phenomenon. We want our caregivers and our physicians to be bringing to the table, to the examining table, the benefit of not only what they have learned from individual patients, but what is known about -- you know, whether it be evidence-based medicine or public health interventions -- we want that population health experience.

As we are learning more and more as we were talking yesterday, about how the family that you live in, the community you live in, the educational experience you have had, all of that, your housing, of course your income, your resources, they contribute in many ways, actually, to your health more than your actual medical care. I mean, when you have an acute, serious condition, of course, the medical care is what you need and what you want, but how did you get there. Sometimes it is just bad luck, but it may be that you were in some kind of car accident -- well, this has public health.

That is what the Committee is about. It is about having information to help people live and function better.