[This Transcript is Unedited]

National Committee on Vital and Health Statistics

Subcommittees on Population Health and

Privacy, Confidentiality and Security

June 19, 2013


National Center for Health Statistics
Hyattsville, MD

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030

P R O C E E D I N G S (3:30 p.m.)

DR. COHEN: I am going to just facilitate the beginning of this discussion. Our time is a little foreshortened. What I think we will do is spend a half an hour in joint discussion and, essentially, feedback from the roundtable and a brief description of work plans moving forward, and open that up for discussion. Then we will probably take another half hour to forty minutes for Populations and then an equal amount of time for Security and Privacy. How does that sound?

DR. FRANCIS: Yes. We’ve got until six. Now, we have two hours effectively.

DR. COHEN: Although, to get to the restaurant at 6:30 will be a challenge.

DR. FRANCIS: Well, maybe we should agree that we have an hour and a half. How about that?

DR. COHEN: Yes. Let’s end at —

DR. FRANCIS: So half an hour Joint, half an hour Pops, half an hour Privacy. Here we go.

DR. COHEN: Done. Sounds good. Susan, would you like to say something? Actually, why don’t we get a couple of these reports out of the way first? No. When we begin our focus on population health, we will do that.

This is the Joint meeting. Do you want to start off with some of your high level vision of where you are going?

DR. FRANCIS: We talked about, basically, the three buckets that came up at the meeting. The things that — in some ways, doing what we can to make the stewardship framework practical. How we do that will depend upon what the stewardship problems are with the types of data that people are using or want to use. That is where we decided we would start out.

We were actually going to go — we could talk about, first of all, what we are going to go look at, get anybody’s suggestions on that or see if anybody has objections to our starting there. Basically, we would love to have the larger group’s feedback about that slide from where the phone call left us earlier this week.

MS. GREENBERG: Can we bring that slide up again?

DR. FRANCIS: The slide was the one — I can just read it to you. It is that we are going to survey the examples from the hearings and roundtable to develop a list of types of data used by communities. Somebody suggested to us that we look at the kinds of data that beacon communities are using — that we add that to the list. Then survey available literature or models that are out there. Who is writing about it?

DR. COHEN: It is the Joint Roundtable.

MS. GREENBERG: It is from the Join Roundtable slides and towards the end.

DR. FRANCIS: The last slide. And determine whether, with what we have got in the box, we are there or whether we need to be asking for hearing or more roundtable time in the fall.

DR. COHEN: Why don’t we just discuss that now?

DR. FRANCIS: Yes. Basically, we would love to pick everyone’s brains about the first two of those more than — is that the way we should be going? Were you happy to have us choose the stewardship — expand the stewardship report to make points practical and provide case examples of practices that help solve the issues in enabling data use? That is what we want to do. In order to do that, we want to do these things.

DR. SUAREZ: Just to quickly jump in, when we say the types of data — I mean, I think it makes sense, but in my mind, in order to make sense it needs to define better what is types of data. I am thinking there is demographics. There is clinical. That is one way of thinking of types of data. Another way of thinking of it is types of data as in certain types of data that are more sensitive like mental health and HIV and others.

What are we — when I read it this way, it seems like we can get a whole host of types of data, even data elements listed. Trying to map those to the stewardship issues becomes probably less significant than if one were to identify X amount of really important types of data for which stewardship is critical. Perhaps pre-defining or at least pre-identifying certain categories of data or types of data that we are really talking about in order to do this survey might be helpful.

MS. KLOSS: I think we were thinking about keeping that fairly high level and going back to the discussion on what types of data are being used that came out in the hearing and not getting to the data element level. I guess you would almost have to do it by source.

DR. SUAREZ: Good. Yes.

DR. COHEN: Let’s just go around the table.

DR. WALKER: This is Jim. We have talked about — I guess it was Lynn that used the word — the view of the elite about what is sensitive and what is not sensitive data. It may not map very well at all to what a community regards as sensitive and non-sensitive. I think — I don’t know how feasible it is, but I don’t see how we can avoid saying what we need is an information system in which a community is asked and can say this is what we regard as sensitive and this is what we don’t care if you trumpet all over the place.

DR. MAYS: I kind of want to get us back very close to that point, which is the issue of the customer and starting back with who actually came to us with these needs. I think the first thing that is really important for us to do is to define who, what impact we want to try and make, and what is feasible for us to do.

If we are really going to do this with communities, what should be turned over and out of our hands? I can’t remember who said something earlier about letting things go. We tend sometimes not to want to do that. If what we are doing is still following up from — I can’t remember — the first report that was even before I started, that was a very different group, even, than I think most of who we have heard from. It is almost like we really have to — I think we are now at a point where we have to decide who it is we are going to do what for in what time span and then say to the other people they are on the next go around or something.

DR. CARR: I agree. That is exactly my question. Who is the customer? What is the deliverable? What did the customer ask for? Again, I go to Altitude of NCVHS. I think we have written a very excellent directional document. I really question how effective we will be if we try to get increasingly granular in response to particular communities. I think our work has the greatest effect when we have painted a framework within which communities can draw from, but without being prescriptive. Again, I echo who is the customer? What did they ask? What is it that we want to do?

DR. FRANCIS: One of the things that we were asked for very specifically, and I am just curious what people think about this. We were asked very specifically — this is not prescriptive. Nobody was talking about requirements. We were asked to share good stories. We were even backing off of the phrase best practices. Now, is that too — is that a direction?

I mean when I say we were asked, we were asked specifically at the roundtable by a number of the participants that were there. If you were going to look at to highlight what was one of the things that was there in that last day of the transcripts, we want good examples. If that is not what people want, we need to rethink.

DR. COHEN: I think you hit on a couple key issues we have been asked. There is — communities want to learn about this. There is a customer out there. I think the key is we haven’t disseminated this information so that communities get it at all. I think when I saw Rachel’s presentation about the OCR, do some YouTube videos about stewardship practices protecting data. I think everything is pretty much there. There is no new information that is needed.

Communities aren’t aware sometimes of these responsibilities. If they are aware, they are not sure how to deal with them. Our issue is communication of these practices because we haven’t done a very good job of it. I think that should be a central priority for whatever this — that is my message from the roundtable.

MS. MILAM: Actually, I think there are a number of areas of application of stewardship to the appropriate customer that are novel, that have not been fleshed out, that I think we could add a lot of value and addition to those practices. When we get into the Privacy discussion I think it will be interesting to talk about. I really support the direction.

In thinking about our architecture, our principles, I can think of three off the top of my head where we have already heard some interesting testimony that we could draw from. Also, I can identify needs for more. Along those lines, I think it is terrific.

I would not suggest looking at the data as defining our next steps. I think it needs to be, from a legal and policy standpoint, the customer. I think it is the right thing to do, but I also think it is the correct way to go from a policy standpoint. We need to be really clear about who we are developing these best practices and framework for. It is different if it is the community and those who support the community, which includes community members and researchers and social service agencies. It is very different than if we are talking about principles for data holders like public health, state and local health departments. I think we need to crisp that up and decide who it is we are trying to help with these practices because the answers will be very different. It all goes to who is the customer and what is our focus.

Finally, a logistical matter, I asked Jeanine for a cab from this meeting to the hotel. She asked me to get a headcount of who wants to ride with me. I guess two other people can go in a cab. Okay. If we need other cabs, we need to let Jeanine know now so that she can arrange for it.


MS. MILAM: To be at six or five after six.

DR. COHEN: 5:30. We have changed this to an hour and a half.

MS. MILAM: Oh, we did? I missed that.

MS. GREENBERG: I didn’t even get that.

DR. FRANCIS: Sally, can I ask you to say just very quickly — you said you could think of at least three areas where it really made sense to work on fleshing out the architecture. Could you just say what those are?

MS. MILAM: I think notice is really interesting. I think when we have these discussions it would be helpful if we do sort of a juxtaposition. We show what it means in the HIPAA world and the treatment and payment world because that is what we are familiar with and then we talk about how that principle lives in the community or whatever we are focusing on to understand the difference.

In the treatment world, a notice is required by law. It is given to a patient or a member. It explains what is going to happen with the health information, how it will be secured, and what the rights are. What is the counterpart in the community and population health? We heard from communities that sometimes they know a study is going on and sometimes they do not. In the public health world, there has not been, in many instances, a requirement for notice. In some instances, we have heard that people have gotten upset because they didn’t know. That is a separate issue from choice.

We have also seen some pretty interesting best practices evolve in the APCD area where states are coming up with ways of letting their populations and their communities know what they are doing with the data through websites, through publicizing requests for data. That is just one area.

The other area I thought would be interesting would be choice. We have heard a lot about choice. An area we have not heard as much about, but is very real in the public health privacy world, which should be real to communities, is minimum necessary. We have not heard testimony on minimum necessary, at least that I can easily recall. It might be in there, but we would need to look for it.

DR. FRANCIS: No, we don’t have anything.

MS. MILAM: I am not getting into disclosure, although that is the hottest issue for me because I understand earlier that in discussions that that was kind of taken off the table to be worked on outside and then brought back. Disclosure is huge, but putting that aside, those are three that I think would really advance the discussion.

DR. FRANCIS: That is very helpful. Marjorie, you had your —

MS. GREENBERG: I do think that — obviously, this is still some conceptualization and fleshing out, but I, personally, think what you are thinking about doing would be useful. I was thinking of something that kind of fits what you described as not being prescriptive, not being regulation, but, in a sense, trying to bring together things that are already going on or that are being discussed in a framework that is really kind of practical and not abstract.

It made me think of something that — thanks to Larry. Larry was just here. Oh, he’s over there — I had some exposure to and that is something called the Playbook. I have been in email contact with some of you about this playbook. That is around the whole issue of primary care and population health and aligning the two together so that they support each other better. There is an activity at CDC called the Playbook. I don’t have my notes on it now, but I can refer you to more information about it.

That is exactly — what they are doing is they have kind of this concept — and I believe this comes out of the ACA, doesn’t it? The Primary Care of Population Health Nexus plus the Learning Health System and all of that? They are gathering these kind of — you could call them best practices. You might just call them practices. What different primary care practices are doing and what different public health agencies are doing. It is a piece of the community. That is sort of the nexus between the clinical system and the public health system.

They are gathering these stories, these principles, these examples, so that everyone doesn’t have to reinvent the wheel. Then they are putting them into this — they are creating this Playbook, which will be web-based and all of that. I actually sat in on a webinar about it. It doesn’t focus — I didn’t hear that there was a lot of focus on this issue, which is consistent with what we are hearing on everything. I think that is kind of a model, maybe, for what you are talking about, kind of a playbook. People can go to it. You know, if you don’t like that song or you want to change the tune or something, okay. At least you know what score it should be in. You might want to look at that. To me, that would be the way to think about it.

DR. STEAD: I resonate with the discussion. I think one of the challenges is that data — one of the key principles of curating data is actually to keep the different sources separate so that the bias that is in the source, the metadata that ought to be explicit, but that is not, is to a degree, consistent within a source. Data that comes from one source — you are going to be able to compare it more than you are going to be able to do as you begin to meld sources together.

One of the key ideas is to actually retain the distinction of the source. That has the great advantage of it sort of narrows what you are working on. You can have a relatively clear understanding of what notice you need and what the right governance is all around that. Then, what you want to think about is how you assemble it for another — how you assemble data for multiple purposes for another source, for another purpose.

You can set several assemblies side by side. The space is cheap. Each can, in fact, have, then, its own governance, et cetera, for its purpose. You can sort of stack these things up. That is one way you can maybe think about how we deal with what I hear are the very different scales we are trying to think in as we think individuals, communities, populations. I just put that out as one framework that might be helpful. I think if, in fact, we could come up with a framework — this sounds like it might be a Justine task — if we could come up with a framework, then the stories and so forth could be hooked to that framework. The reference tools could be hooked to that framework. We could work forward over time.

DR. FRANCIS: Why don’t we just — because we are going to need to hand the baton from the Privacy side to the Pop side, why don’t we run the room? Maybe we ought to start, and then end with you. Is that okay, Ob?

DR. WALKER: Very quickly, this is sort of what Bill said. We are not going to tell stories we think are counterproductive or irrelevant so they are best practices in our minds, in some sense. Stories don’t make any sense without a vision. Justine’s slide said without a vision, you get confusion. I think we do need to start with a framework. Maybe be modest about how certain it is to be correct, but then you have something on which everything else can make some kind of sense or against which it can be judged.

DR. BURKE: After what I heard Bill stay and what I heard Marjorie say, I have this image, a business model, of what we can do to unite the customer of information, a community, with a supplier information, some form of government, in the context of a broker’s manual. If we were going to broker this relationship and sell a product to the willing customer, the community, what would we have to master? What would we have to lay side by side to depict the differences, the distinctions?

Listening to the customer — there is a role here for educating the users in this group on what the requirements are to be a good broker — listening to the customer, assembling available products that might work, and describing the differences, the pluses the minuses, in a way that you can hook things to as you say.

DR. GREEN: One way to get quickly to a framework that is contemporary and that we haven’t tapped into yet is the community engagement, operations that are buried within NIH’s CTSAs. There are 56 of those.

DR. FRANCIS: NIH’s what?


DR. FRANCIS: Okay. What is that?

DR. GREEN: Clinical and Translational Science Awards. The purpose is to accelerate knowledge into proper application to actually elevate individual and population health, the gap. Why do we know what to do, but don’t do it? Within those 56 awards, there is now — multiply that by about five. There will be about 250 years of experience of trying to use data for translational research at particular locations with communities as partners.

They are organized into what NIH calls a KFC, a Key Functioning Committee. If you go to the NIH website and look that up, you find there are three co-Chairs of that Key Functioning Committee. Virtually all of those have published research challenges that they face when they try to collect, use, re-use data exactly the way Bill was talking about. It is a very rich resource. I believe you will find most of the framework sitting there.

DR. MAYS: One of the things that we are known for in NCVHS is doing what we do very well. I think it is why when letters go to the Secretary, they are taken so seriously. What concerns me is how broad we are getting. I don’t think, very honestly, because we have talked about this that the community that came in for the first hearing, which were really people who were belonging to community organizations.

Anything below — I am going to say it this way — anything below let’s say the Department of Public Health, I don’t think we are there to be able to make sure that the suggestions that we render are really the best. We keep talking about all the people that we think we need to talk to. We are making new friends. I don’t think we are ready to start sending the Secretary things just from our new friends. We really have our own expertise that we bring to the table that we listen at a hearing, but we also know, in terms of our expertise, what to take and what not to take of what we heard.

I am going to be very honest. I just think we should stay at the level of above the Department of Public Health and up because, for right now — I mean, I can see two years from now, in terms of lots of hearings and ferreting out and a whole lot of new friends and stuff that we would be better at it, but, for now, I think we should do what we do very well so that our credibility, it stays with us. If we don’t do it well, all that is going to have happen is we will have done a ton of things and then the community is standing out there criticizing us because we didn’t get it right. We won’t get it right in a short amount of time.

If we think of the span, we are talking about, what, November getting something out? I don’t know how many people we can hear from and do by November. Even if we say we get a letter to the Secretary in January or February, I just don’t know that we are there yet. I love community. I am in it. I work with it. But I don’t think we are ready for what we usually do to be the big proponents of it right now.

DR. CARR: I second what Vicki said. I also think every time we make a choice to do something, we are making a choice to not do something else. I think that in our work there is a byproduct where we hear of best practices and we can catalogue that. To set out and endeavor to decide who to hear from and then decide if they are good enough might, as Vicki said, give a very narrow outcome or would be a lot of work for an incomplete dataset.

MS. MILAM: I want to come back to a comment that Bill made. As you were talking about stacking your different datasets and curating the data, what comes to my mind are the different sets of legal obligations you have with respect to each dataset you have. You have probably signed a separate data use agreement for each of those datasets. You agreed you would use that data for a specific purpose. In your responsibilities to curate the data, the data steward has to make sure that they are not using the data for a purpose beyond that which they have agreed to.

Also, if they collected it directly, you have to go back to your privacy notice and see are you within the purpose? Is it reasonably anticipated or is it beyond it? I think when we think about our audience and we think about the responsibilities — and in working in a population health agency that releases data, I know many of the people who are signing our agreements are not doing the best job curating the data. They don’t understand how to make sure that it is only used for a specific use. I don’t think all of those many pages of requirements translates into reality. I think maybe that is a place where we might have some benefit in the community.

MS. GREENBERG: I think I forgot to put this down. I have something for while we are all still together. Are we all going to stay together anyway?


MS. GREENBERG: Well, should I say it?

DR. COHEN: I don’t know what you are going to say. Who is going to stop you?

MS. GREENBERG: It is more process than anything else, but I raise the issue as to whether the summary of the roundtable — we know it will be posted on our website. I will send it out to everybody who participated in any of our community hearings. Then I said, well, are we going to do anything else with it? I was thinking I don’t quite see sending it to the Secretary, but I wondered about — since we always report to the Secretary if not through, then at least in conjunction with reporting to the Data Council. All of the OpDivs, as it were — the operating divisions or whatever — are on the Data Council.

I was thinking of whether it might be a good idea to — Jim isn’t here. He is the Executive Secretary of the Data Council — of sending it to the Data Council and asking for an opportunity to present on it, which, definitely, the Committee has done in the past. It could be one of the two co-Chairs, however, whoever we could work out who could be there and when. Then, also, though, asking or describing the importance of engaging more of the Department and more agencies in this as opposed to just doing one offs — you know, I go after CDC. Somebody goes after SAMHSA. Somebody goes after this one. It puts it in a context.

It wouldn’t necessarily be the person who attends Data Council, but they are representing their agency. That might be kind of a good way to elevate it and also start pulling in these other agencies. It is just an idea.

DR. FRANCIS: That is an excellent point.

MR. SOONTHORNSIMA: That really rounds up what I was going to say nicely. What you are talking about here is at more of a federal level among the agencies and departments. That is great. That is one side of the bookend. On the other side, I think I go back to the slide that you said what we are trying to do now is make practical the stewardship framework. It is a framework. It is already a framework. Maybe we want to demonstrate at maybe a high level, not give too much detail, don’t get in the weeds with the data, but pick a community. I think you already know who these people might be.

You would have to ask the following questions because, to the point that you were making, Bill, earlier, there are so many different data sources and so forth. I think it has to start with, one, what problem that community is trying to solve? The problem will lead to a different type of information/data/sources without getting in the weeds, again. Then you apply, in this particular use case, for this particular set of problems, it is the rats we are worrying about or it is the something else that we are worrying about. Then you apply the framework. That makes it a little bit more grounded. Does that make sense?


DR. SOONTHORNSIMA: That is one use case. You can pick another community how the framework could be applied in a different fashion, but the principles remain the same. You might actually be able to tease out how some of the principles apply more directly than in another scenario. I am not sure that makes sense.

DR. FRANCIS: It makes a lot of sense.

DR. SOONTHORNSIMA: I started thinking about some of the data needs. Some of the data — you think about, at a high level, there are — an example that we saw in the slide that talked about all payers database. Well, that is not the only source or sources. There are some other sort of private set of data, public data that could require different application of stewardship. I will pause right there. That is really at the ground level. What Marjorie was talking about is really more at the federal level that we can do.

DR. FRANCIS: That is a segue. We took a half an hour to pick other people’s brains. You guys get half an hour, too.

(Whereupon the breakout ended.)