[This Transcript is Unedited]
Hubert H. Humphrey Building
Room 705A
200 Independence Ave., SW
Washington, D.C. 20201
Agenda Item: Welcome
DR. COHEN: Good morning. My name is Bruce Cohen, I am co-chair of the Population Subcommittee, and we are meeting this morning. We are constrained by time so I am sure that people will be wandering in but let us begin. I am a member of the Full Committee and co-chair of the Population Subcommittee and I have no conflicts.
DR. MAYS: Vickie Mays, a member of the Subcommittee, member of the Full Committee, I have no conflicts.
DR. SUAREZ: Good morning everyone, my name is Walter Suarez. I am with Kaiser Permanente and a member of the Full Committee, a member of the Population's Health Subcommittee, and I do not have any conflict.
MR. BURKE: Jack Burke, Harvard Pilgrim Health Care in Boston, a member of the Full Committee, member of the Population Health Committee and member of the Privacy, Security and Confidentiality Subcommittee, no conflicts.
DR. CARR: Justine Carr, Steward Health Care, chair of the working group, no conflicts.
DR. JEAN PAUL: Tammara Jean Paul, on the Subcommittee staff.
MS. WEBSTER: Kassi Webster, CDC, NCHS, Population Subcommittee staff.
DR. STEAD: Bill Stead, Vanderbilt, Full Committee, no conflicts.
MS. JACKSON: Debbie Jackson, National Center of Health Statistics, CDC, Committee staff.
DR. CORNELIUS: Liewellyn Cornelius, University of Maryland School of Social Work, on the Subcommittee for Population Health and also a member of the Full Committee, no conflict.
DR. FRANCIS: Leslie Francis, Law and Philosophy, University of Utah, I am a member of this Subcommittee, member of the Full Committee and co-chair of the Privacy, Confidentiality, and Security Subcommittee, and I have no conflicts.
DR NICHOLS: Len Nichols, George Mason University, member of the Full Committee, member of this Subcommittee and I have no conflicts.
MS. KANAAN: Susan Kanaan, writer for the Committee.
(Introductions around the room)
DR. COHEN: You all should have agendas in front of you. I am going to switch it around a little. Essentially, what I would like.
DR. BREEN: Bruce, a few of us are on the phone. Nancy Breen, National Cancer Institute.
DR. COHEN: Sallie are you there? I guess Sallie's not there. Anyone else on the phone?
DR. REMINGTON: This is Pat Remington, the University of Wisconsin. I am on the Subcommittee.
DR. COHEN: Fantastic. We are going to take your name in vain several times this morning, Pat, so I am glad you are on the phone.
DR. REMINGTON: I apologize for what I have done. The vanity of it.
DR. COHEN: I do not know whether Nancy, you, and Pat have access to the latest version of the feedback tool. We are going to discuss that first and try to finish it off. I will summarize briefly, where we are at from yesterday, and then we will talk about the workshop that is going to be at the end of April to early May. Then we will round-up with I think with Vickie giving us an update on the APHA session. If we have time we will discuss a little of trying to operationalized the Influences of Health diagram.
DR. BREEN: Was the latest Population Health tool draft, the one that Tammara sent out on Wednesday?
DR. COHEN: Yes, it was revised some yesterday but the focuses of the revisions were on the privacy section, which I do not think we are going to touch this morning.
DR. BREEN: Okay.
DR. REMINGTON: And which email was that from Wednesday?
DR. BREEN: It was sent Wednesday the 27th at 8:34 in the morning by Tammara Jean Paul.
DR. SUAREZ: That might have been sent to members of the subcommittee
DR. COHEN: Is there anyway we can send Pat Remington a copy of that email?
DR. BREEN: What is your email address and I can send it to you?
DR. REMINGTON: That would be great. plreming@wisc.edu
DR. BREEN: Got it, okay I knew it would come up if I used the first few letters. Okay, I am sending it to you.
DR. REMINGTON: Thank you very much.
DR. COHEN: Would you like to introduce yourself please?
DR. BLEWETT: Lynn Blewett.
DR. COHEN: Thanks, a member of the Committee.
DR. BLEWETT: Member of the Full Committee.
DR. COHEN: And.
DR. BLEWETT: And.
DR. COHEN: Member of the Population Subcommittee, come on.
DR. BLEWETT: I thought I would be first.
DR. COHEN: Do you have any conflicts?
DR. BLEWETT: No conflict, thank you.
DR. COHEN: Great. Did I hear someone else on the phone?
MS. MILAM: Hi Bruce, its Sallie.
DR. COHEN: Great, I am glad you can join us.
DR. CAIN: Virginia Cain, NCHS.
DR. COHEN: Oh, fantastic. We have a quorum. Let me just briefly summarize where we are at, at the end of yesterday. In the Privacy Subcommittee meeting, we began finalizing this feedback tool. The goal will be for this feedback tool, to finalize it today and then I am going to ask Nancy and Vickie to do a final review after Tammara sends them the version by the end of today. I will get it and then do some pilot testing next week, and hopefully will get feedback and make any final tweaks.
Then the goal is to distribute this to all of the committee members with the committee members sending this out to their colleagues, their list serves, to any organization or individuals who they feel can provide us feedback on the issues related to community data use and privacy.
Tammara will have access to the Survey Monkey version and will be analyzing this data as they come in. We hope to get some insight between now, and I would say the middle of April, that will help refine the discussion at a workshop and maybe help us begin crafting recommendations.
It is also an opportunity to solicit organizations who might be interested in attending the workshop. I briefly spoke to Linda, and Linda, Leslie and Mya are going to try to finalize the Privacy section by the end of the day. So that is where we are on the feedback instrument.
In addition, yesterday, we began brainstorming about organizations and individuals we would like to attend the workshop in the end of April, early May, and we are soliciting suggestions for speakers as well. Yes, Vickie.
DR. MAYS: Do we have some number of people that we can just invite versus speakers? Should we be thinking about people that we can have in the audience? Has anyone said how many we can have?
DR. COHEN: That is a good question and since Marjorie just walked in, I can ask her.
MS. GREENBERG: Good Morning I am Marjorie Greenberg, National Center for Health Statistics, CDC, and I believe I am Executive Secretary to the Committee.
DR. COHEN: Marjorie there was a question. Is there a maximum number of people who we can invite to attend the workshop?
MS. GREENBERG: You can invite as many people as you want. We will have to assess. Generally, the Standard Subcommittee we never have to pay for anyone to travel. But, when you are dealing with Populations and Privacy and often people from communities, from states, from Academia, we recognize they do not have the resources to travel on their own. A general rule of thumb has been that we would pay for a maximum of maybe four people. Maybe two or three, but we have paid for as many as four. Now this is two subcommittees, not to mention a workgroup and a partridge and a pear tree or whatever.
We could probably increase that. I have to check with Katherine, who is sitting over there. She holds the budget and now that we are pretty much at full complement for the committee, travel is always a very big item. But I will work with you. Katherine and I will work with you. That is about all I can say. I would love to keep it to six, but it can't.
DR. COHEN: That would be a constraint on getting.
MS. GREENBERG: We cannot pay for 12-15 or whatever, that is just not within our resources. If we just followed our rule of thumb and we have the money, I would say no more than eight.
MS. KLOSS: I think the other way to view that is, what we do want is to optimize the design of the program in the way the breakouts are to work.
I think when we were originally thinking about this and had our Privacy Subcommittee conference call, we were thinking about a meeting of 20 to 30, and that is how we set on three breakouts. I do not think we would want to be any larger than that. So I think we have to be selective in terms of who is invited.
MS. GREENBERG: To the extent that there are people in the Metropolitan area, who can contribute, that would be a good thing. Occasionally, people can come on their own dime, or have a grant or something that they can travel under. We can, very infrequently, but we have been able sometimes to get some of the other agencies to support a travel for one or two people.
Now, we already have funds, you know for the working group from the Office of the Chief Technology Officer. The working group is a party to this, right?
DR. COHEN: Yes.
MS. GREENBERG: It might give us a little flexibility. I am thinking of the big stakeholder roundtable that Standards had and they had quite a few people who participated on the phone, but I mean with breakout sessions that absolutely would not work.
PARTICIPANT: Could we raise money from private foundations? Because I mean this is not a lot of money.
MS. GREENBERG: Tell me what you mean by raise money. If RWJ was interested in this and said, we have these grantees or something. We will be glad to support some people to come. That is fine. That is between them and the individuals.
DR. COHEN: We really need to discuss these logistics but let us do this off line later, great. Anymore questions before we begin looking at the Feedback Tool? Great, I hope you have the hardcopies or can follow the questions that are displayed here.
We will go through these section by section. The first section is on Data Access and Data Use. The first question, I am sorry. Walter had a suggestion to add a question to this section.
DR. SUAREZ: I was reading this and thinking of the way to organize the various sections. I am not going to suggest any reorder or anything like that. But clearly this first section that deals with what I would call and I would rename it to be Data Collection and Use not Data Access and Use. Data Collection and Use would be the questions about the source of the data, the use of the data.
Then there is the section of Analysis of Tools or Tools for Analysis. Then after that, I would suggest to insert a section that would have a two or three questions about the data disclosures and releases of data, which is not the same to be covered in the privacy side. But, more the questions about releases of reports, and releases of data, purposes, value, and those kinds of questions about the disclosure of the data. That is different from the first round of questions that are more on the collection and use.
The point about adding questions about disclosures. Istead of really adding question about disclosures in this section I was suggesting that. Organizing it into data collection and use, data tool for analysis, and then data disclosures, and then the privacy side, and whatever other sections are in there.
DR. COHEN: My response to that is I think we should add these questions, but I do not want to create a whole other new section and data release and dissemination is part of data use. I think they could fit nicely in the first section.
DR. SUAREZ: That would be fine.
DR. BREEN: Walter, would it be friendly to say data collection, access, and use, because sometimes that is what we are trying to get at with the first question. Sometimes they are pulling from publicly available data and sometimes they are collecting their own data.
DR. SUAREZ: We were debating yesterday the concerns about the word access because access is a term that means different things to different people. Access has been done by people within the data collection agency, whether there is a community initiative or some other public health organizations, and that is accessed by staff to use the data. Then there is access from outside, which is really technically an access for release and disclosures. Instead of using the word, access I think what can be said is really data collection use and disclosures and that covers basically the three elements. Use and disclosure covers the concept of access in my mind.
DR. COHEN: Are you comfortable with that Nancy? I understand the distinction, better facts creates an issue for some.
DR. BREEN: I am okay with either one, but do you want collection use and disclosure as Walter suggested? I am just kind of taking notes of the view that he and I are going to be making final changes this afternoon.
DR. COHEN: What do folks think?
MS. KLOSS: I think disclosure sounds kind of HIPAAish again, and I think it is meant to be broader.
MS. KLOSS: Would dissemination be better?
DR. FRANCIS: Jack's term yesterday was release. Dissemination seems to me to be more consistent.
MR. BURKE: The variation is going to be in the level of maturity of the groups and some will recognize what disclosure means, some will recognize what the words mean, but I thought release was fairly uniform and would apply to any maturity of the group.
DR. COHEN: So data collection and release.
DR. SUAREZ: Use and release.
DR. COHEN: Data collection, use, and release.
DR. SUAREZ: Yes.
MS. KLOSS: Okay, thank you.
DR. FRANCIS: Bruce, a quick preliminary also. We need to be sure about this last sentence of the kind of prefix. Is it okay for us to say that NCVHS greatly appreciates, under the paperwork reduction and survey stuff? We just need to check that.
DR. SUAREZ: You mean page one.
DR. FRANCIS: Page one.
DR. COHEN: This is the intro and we ask people.
DR. BREEN: I think we should tell them who is doing this survey and thank them. I do not think there would be a problem with putting in.
DR. COHEN: Nancy I have to stop you. We cannot use the 'S' word. This is a feedback tool and this is not a government enterprise. We are hoping to inform the National Committee, but this is being done by individuals who happen to be Committee members.
DR. FRANCIS: We had better get survey out of the paragraph there.
DR. COHEN: So we need a brief feedback.
DR. JACKSON: I can follow up with Marjorie and Jim Scanlon had indicated he wanted to do some tweaking. I know Tammara was already asking about that last sentence, because of the sensitivity.
DR. COHEN: We will leave that in Debbie's capable hands to revise the intro so it needs whatever requirements are necessary. Getting back to Walter's suggestion, I would add after Question 8 in the first section. Question 3 is what types of data do you use? How satisfied are you? As four or five? Whether the challenge is, do you collect your own data? If the answer is yes, we asked them, do you have resources necessary to analyze the data you use? Then I would ask a question something like, how do you release data? Then check all that apply. One would be reports, either online or hard copy. Two would be providing aggregate, do you identify data to users would be one and then another response would be providing individual level data to others. Something like that. Is that what you are thinking Walter?
DR. SUAREZ: I was going to be more generic to say the four questions and then decide maybe there is one or two about more specific. But, is what data to whom, how, and for what purpose? What data is being released, or disseminated, or whatever? To whom and what are the examples of who is this data released to? Then by the way you can add those questions about, do you release individually identifiable data? Those kinds of questions. We are not calling it here I suppose, PHI this early but lets call it individually identifiable data. How is the other question that you were getting into with your first suggested question and then for what purpose really. That is where there is an opportunity for people to point out the reasons. Maybe there is a fifth element, which is the value of any assessment of the value and benefits that the release of the data has produced.
DR. COHEN: My initial response is we would want to keep these closed ended and simple questions, rather than open-ended questions. I think if we could make these simple close-ended questions that would be helpful and I do not know in this kind of feedback group whether we need this level of detail as well. Vicki and then Marjorie.
DR. MAYS: I was just going to offer a friendly suggestion. Can you write the question for us? Let us go on to another one. Can you write one and then we can work on it?
DR. SUAREZ: Like right now?
DR. MAYS: Yes.
DR. SUAREZ: Okay.
MS. GREENBERG: Let me just say overall obviously I continue to have some anxiety about how this is presented for two reasons. One is I do not think we would be going about doing a survey we talked about that yesterday. The other is, even if we could I think there is just too many questions and too much information. But, you said you were going to pilot the feedback, which is the mechanism whatever, tool which is a very good idea and I assume you will debrief the people you pilot with or something. Hopefully then you will get it if it's overly burdensome or not realistic, you will find that out. When I was getting coffee, did you talk about the opening?
DR. COHEN: Yes.
MS. GREENBERG: Because and I apologize for that, I should have at least stayed for that, but can we go back to that? I am sorry but just what is written here in front of me I have several problems with it.
DR. COHEN: So what we decided is that Marjorie, you and Debbie and Jim will go through the introduction and craft it appropriately to meet our needs offline. However, you do it, and however you are comfortable with in terms of references to organizations that will be fine.
MS. GREENBERG: Okay. Obviously, you removed survey and that is good.
DR. COHEN: If we can have any reference to the National Committee that is fine as well.
MS. GREENBERG: I think you can reference that the National Committee is doing the study. I do not think that this should be and you ever sending it out is interested in helping the National Committee gather information. As I said, the people whom you are working with, whom you are inviting to this hearing, you have invited to past hearings, or even you invited and could not come. I mean people you have got a relationship with over this effort, I think it is fine to be direct with them. I think to the extent that you are sort of pushing it out to a lot of other people, it is really got to be on behalf of whoever is pushing it out.
DR. COHEN: Yes.
MS. GREENBERG: Because then it really goes beyond the usually information collection.
DR. COHEN: Fine, however you decide to that will be fine.
MS. GREENBERG: Okay, can you give us a timeline because you need to get this thing out.
DR. COHEN: I would say, early next week for the introduction. We will not need the introduction to finalize the questionnaire for pilot testing, but hopefully all pilot testing will happen next week.
MS. GREENBERG: Okay. Thank you, I apologize for back tracking.
DR. COHEN: Yes, oh, I am sorry, Justine.
DR. CARR: I think that it would be helpful to just sort of have a very big picture. So we are asking a great number of questions. We are going to get that back and that is going to do what? When we get this, we will take this from it and we will do that. Where are we?
DR. COHEN: So the goal here is to cast a wide net from a variety of community organizations and data providers, actually, to identify essentially what is working well, what the gaps in data are, how the federal government can help support activities.
We also want to find out what is known in these community groups in terms of privacy and confidentiality practices. We want to know if there are tools out there that folks are using, and we also want some feedback for those who have read the CLS Report. The goal of this exercise is to help refine the discussions at the workshop. Maybe identify organizations that want to participate in the workshop, and the third is help us begin thinking about what potential recommendations and outcomes can be from this process.
DR. CARR: My observation is that we have touched upon every possible aspect, including from collecting data, as well as aggregating data, your provider, your payer whatever. We have asked the universe of questions. So is there then a process whereby we prioritize? Because with this feedback, we will get very interesting feedback on everything, but to make this endeavor focused and on a deliverable. Do we have some kind of prioritization process that we will follow to decide how we drive the hearing?
DR. COHEN: The hearing has the three themes that we have already identified.
DR. CARR: So all of these data will feed into, reframing the questions or how does all this survey impact the hearing, which then impacts the final product?
DR. COHEN: My vision is, if we uncover specific issues we can integrate them into the presentations either from the invited speakers, or from part of the small workgroup discussions. To help direct those, to see if they resinate as part of the workshop.
DR. FRANCIS: I thought it was also a goal that we might possibly even identify from this, from particularly interesting responses people we might want to invite to participate. This is not anything that we can consider the kind of data that would be valid or even reliable with respect to questions like, could we generalize about how communities are using data. This is really the kind of fishing expedition you might get like when a magazine asks for reader responses.
DR. CARR: No, I am just advocating for a process. We are trying to encourage wide dissemination. We are going to get a boat load of stuff back, and in very short order have to be ready for the conference. How are we framing this data? I get it that we have the questions. I am just saying there will be a need to manage the incoming if it is extensive.
DR. COHEN: The good news is, in Survey Monkey and with Tammara's skills, we will be able to compile the data instantaneously so we will be able to look at it and figure out what it means.
DR. CARR: So that is the part to figure out. Who will sit down at a table and say, we learned all these things. This will now drive our hearing in the following way.
DR. COHEN: Essentially, if we get this out in the middle of March, in the middle of April, Tammara will send this out. Graphs and charts summarizing the results and we will figure out how to incorporate that into the discussion from the workshop and maybe we will identify folks to invite. Maybe it will give us some insight into areas where we need to think about forming recommendations.
MS. KLOSS: It might be helpful and I know there were questions that came up yesterday in the Privacy hearing also about what the process is. It might be helpful if our Subcommittee just kind of did a timeline or a Gant chart on what the steps are to get from here to the end of April. I can certainly conceive of a joint Subcommittee call once we have the data in hand and do a final tweak of the final questions for the discussion groups. Probably put some graphs together as part of the introduction materials, that we get presented at the conference and I thin it's good to look at this effort as part of the environmental scan. It is just spreading that out a little further, so it is not precise, it is not defensible, but it is a broader scan than interviewing half a dozen communities.
DR. FRANCIS: This actually does raise another question. I want to be very careful, in a way not to call this data, because it is just information that we are getting, it is not systematic in a way that we know. I would love at some point, we do not have enough time right now, but I would love to know a little more about Susan's methodology in the environmental scan. Because I think we need to be thinking about what the environment is that got scanned.
DR. COHEN: SO Susan is going to be giving a report on that later today.
DR. FRANCIS: Good.
MS. MILAM: I am wondering if the survey results were at the point of reviewing the results. Once we get the feedback it will just be about two weeks prior to the hearing. I like the idea of doing a work plan of subs between now and the hearing. I am concerned that we not rely on the feedback results, because that only gives folks two weeks prior to the hearing. I feel like we need to build our agenda and write our speech based on what we know so that we can get invitations out. I think waiting until two weeks before the hearing for some folks puts them in a bad position.
DR. COHEN: We started that process yesterday at the Privacy Committee brainstorming about the folks we wanted to invite and you are absolutely right. I think we are going to need to have a conference call very soon, perhaps next week to prioritize our list of potential invited speakers because we need to get those out as soon as possible.
DR. REMINGTON: I agree with that completely. A quick question about the number of people intended to receive this. Are we talking about 15 or 20, or 100 people?
DR. COHEN: Thousands, we are going to give it to folks to share with their list serves and we will see what we get back. Again, everyone is absolutely right, this is a purposive feedback mechanism just to solicit ideas and brainstorm. It is not intended to be anything more than that, so I do not know how many responses we will get back.
DR. REMINGTON: I see okay, thanks.
DR. BREEN: Another question of clarification. Bruce when you were laying out the purposes of the survey it was to just kind of paraphrasing here, but to obtain data.
DR. COHEN: What survey?
DR. BREEN: The questions we are sending out. We want information to ensure that the workshop will resinate with local groups and identify organizations that want to participate and learn what steps are needed. Those were the three things, so do we really want to identify organizations that want to participate? Or is that like a broader process, because it is not really the workshop that we are thinking they would participate in because of the time issue that was just brought up. We are not going to have information from this thing we are sending out will be too late. We will want to invite people before that.
DR. COHEN: So I need to think more about that. I guess my sense is if organizations receive this and seem very interested in this process. When we get that information back if we want to contact them at this point in time to tell them about the workshop. We need to figure out the logistics of invitations, but we will do it then. I cannot give you a definitive answer, Nancy. I think we will just see what we get and when we get it, in terms of using this to invite organizations to participate in the workshop. Clearly, we need to begin inviting the organizations and community groups as soon as possible that we want to be involved. This is really a secondary mechanism, not our primary mechanism to do that. Len.
DR. NICHOLS: So I was wondering if we could get back to what I think we are supposed to be doing here and that is making these questions as good as we can get them.
DR. COHEN: Thank you.
DR. NICHOLS: On number five, I had two suggestions and I am not sure they are the right place to stick them as alternative responses, but I think we need two dimensions we are missing. One is, I can get what I need from the Web, easily downloadable, and the other is a time dimension. What is there - the lag is too long or whatever, so I would suggest we add boxes and in fact suggest we change the question to what are the limitations or challenges? Why should not we say, what are the good parts or positive aspects or what do you like about what is going on?
I just think that there are people out there who go to these amazing websites now that have been constructed; one by ASPI, one by ShadeEch(?), one by other people with county health data, where they are basically downloading aggregated data that they are using. Then there is a whole level of people trying to get to actual micro data and that is where most of the problems come, and I do not think we are distinguishing them on them. I just want to say I think we want a box in there on what I need is easily downloadable or something like that, and then a box in there on the time dimension.
DR. BREEN: Where are you, you said page five.
DR. NICHOLS: Number five.
DR. BREEN: I think we are missing some pagination, so we need to say what section or the number of the question would help.
DR. COHEN: Nancy its question number five.
DR. BREEN: Question 5, sorry I thought you said page five. Excuse me. Okay so the new boxes would be that you are proposing.
DR. NICHOLS: What I need is easily downloadable and the other one would be the time lag is too long.
DR. BREEN: So the data are not timely.
DR. NICHOLS: Correct.
DR. COHEN: Those are not really challenges, the time for the data are not timely are certainly a challenge.
DR. NICHOLS: What you could say what I need is not easily downloadable.
DR. COHEN: Yes.
DR. NICHOLS: I just think we want to get web use versus brain time data.
MS. KLOSS: Maybe web use could come up in Question 7?
DR. COHEN: No, that is your own.
MS. KLOSS: No.
DR. MAYS: What about Question 14, where we are asking about what analytic tools or support you need that you do not currently use. We get information there about web-based systems that aggregate data, mapping software, so there are some things we get there. Best practices I think will get identified in the meeting. I think problems are what we are trying to identify in the survey so that we kind of have a sense of the issues to explore in order to be able to make recommendations.
DR. COHEN: So I think we can do both, I would like Lynn's additions to Question 5, but I think 14 will get us to web use as well. If that is okay? If we keep it in both places? Tammara, can you go back to Question 5? Limitations is what I need is not downloadable, so I think those are both response categories that work to limitations. Thanks. We really wanted to spend time talking about not only about the survey, but about the workshop itself, my suggestion is if you have any other comments or feedback on the survey, get to Tammara, Vickie and me by the end of the meeting and we'll try to incorporate those suggestions. Let's get to Walter's questions and then I want to spend the last 10 or 15 minutes brainstorming about suggested speakers or organizations for the workshop.
DR. SUAREZ: Very briefly, another comment is on the Questions 8 and 9. They really are analysis type questions that I suggest going to the next section on Data Analysis. They have resources necessary to analyze the data, what additional resource do you need to analyze the data? That seems to be a question to go under the Tools for Analysis, because the Question 10 really goes back to the data elements and the data points that are being noted on the first section.
DR. COHEN: Great.
DR. SUAREZ: Questions 8 and 9 seems to me belong to the other section. My four questions and I do not know if you have access to email, or not. I can read them really quickly in the interest of time. This is examples of multiple choice answers. What data is being released disseminated, and then mark all that apply. The options are, general summary reports and community resources, access, utilization across party, aggregated data files and tables for further analysis, and aggregated identified data, unaggregated identified data, other, and please specify.
The next question is, the data is being released to, and then mark all that apply. General community, researchers, health care organizations, (Providers, payers, other government agencies), and then other. Then the third question is the purposes for releasing/disseminated the data include, and then mark all that apply. The five options are; information the community about the state of health, educating the community about health resources, allowing community members to utilize the data for purposes of selecting health resources, monitoring progress toward defined established goals, and then other purposes, and please specify.
The last question is how is the data being released/disseminated? Via a portal website that allows people to download the data, via electronic mailing list through electronic media, in published printed reports, other, and please specify. So those are a sort of four question that deal with to whom the data is being released, for what purpose and how.
DR. COHEN: Fantastic Walter, those are really very insightful. Marjorie, last comment on the questions and I think Tammara, Kassi, and Vickie, if I can impose upon you for a lunchtime meeting where we'll try to put all this together?
MS. GREENBERG: I am like a broken record I am afraid. I just want to give an example of the way I see this might work so that you will have that context and that is I am thinking of for example an organization like NADO. They have already testified to the Committee. I would hope that they would be a participant in this workshop because they work with these state data organizations, which are different somewhat, but very related too.
They themselves in preparation for coming to the workshop, it is not unusual that you reach out to your membership, if you are a membership organization like that. Blue Cross might do it and not over do it. I am going to be participating in this hearing, or this workshop. There is even a problem with the term workshop, frankly, these are difficult times, but we cannot hold workshops in the traditional way. In any event, this meeting of the Committee, we are going to provide some background information. I am working with Susan on that, as we discussed.
There are a lot of things the Committee is interested in and they are in this feedback tour or whatever, and they can put it out to all their members or whatever. It might be something Walter would send out because he is a long-time member of NADO. Vickie has groups that she is working with. I am involved with this activity. These are the kind of things they are interested in. In that sense we are just gathering information like an environmental scan, but that is the context in which, at least I feel would be the most likely to have success and not get into trouble.
DR. COHEN: That is exactly what the intention for this exercise is.
MS. GREENBERG: I know it is, but I just wanted to give that example.
DR. COHEN: Yes, no that is perfect.
DR. MAYS: Marjorie, would it be appropriate to put at the end of it that the workshop is being held and people are free to attend?
MS. GREENBERG: Absolutely.
DR. MAYS: If we could put that in it does seem like we are gathering this and you are free to come.
MS. GREENBERG: To those that we are not specifically inviting, or recruiting.
MS. KLOSS: We have to register them in some way. We would have to know who is coming.
MS. GREENBERG: Not really. We will be meeting in the largest room in have at NCHS. They can be sitting around the room. Also I think we should at least the broadcast the preliminary parts of it.
MS. MILAM: This is Sallie. Sorry to interrupt I just received a call. I have a family emergency. I am going to need to get off the phone and it does not sound like I am going be able to participate the rest of the morning. Just wanted to let you know I apologize.
MS. GREENBERG: The other thing I wanted to say about this, even though I am nervous Nellie, maybe that is why I definitely need to retire, but is that on the plus side. This is a way to really push out to all these groups that the Committee is working on this space.
DR. COHEN: Exactly.
MS. GREENBERG: Even if they do not answer this. Even if people do not answer it, that raises their awareness that the Committee is working in this space in gender partnership so all that is very good.
DR. COHEN: So Tammara and Kassi at the end thank you for providing us with this important information. Could you write a paragraph describing what this event is going to be and cordially inviting them? One of you identify a contact person at NCHS if they are interested in following up about the workshop.
MS. GREENBERG: He is talking about actually putting that at the end of the feedback tool. We will work with him on that Tammara.
DR. FRANCIS: I would like us to get to the question speakers.
DR. COHEN: Okay.
DR. FRANCIS: I do not know particular speakers but this is for the Population's side of things. I would particularly like to know the following three types of people, and if you can think of them please try. The first is folks who are working with small group data where there might be identifiably issues. That might be for example smaller geographical areas or ethnic groups where there is a small set of numbers in a particular community.
The second, I would be really interested in are people who are interested in linking data where they might need identifiers and all PARE Claims databases are a good example of that I think. But, you can again think about who you like. I will come back to the third.
DR. COHEN: So we have five minutes to brainstorm about potential speakers. The ones that I had suggested are so far from Susan Kanaan, who did the environmental scan. Pat Remington, Pat you still with us?
DR. REMINGTON: Could you tell me the specific dates?
DR. COHEN: April 30th to May 1st.
DR. FRANCIS: It is Tuesday, Wednesday, and Thursday morning of that week.
DR. COHEN: April 30th to May 2nd is that correct? Susan also suggested Chris Folger from Community Commons, Jim Keaty from the California Endowment, and Debra Puntenney from ABCD Institute. These are possibilities.
DR. FRANCIS: the third thing I wanted was people who know a lot about data use agreements.
DR. COHEN: I am interested in communities, the kinds of users who have experience using the data in community coalitions. I am interested in people who provide data to communities and work with a variety of communities to provide thir data. Other suggestions from the Data workgroup include Dora Barilla from Loma Linda, Michael Johnson from Kaiser Oregon, and Lea Vaughn who is on the Data workgroup who I think would actually be a wonderful potential speaker to pull together some of the issues.
MS. GREENBERG: I should say at least Pat, Leah, anybody who's actually on the workgroup. Obviously, we are paying to bring them in. They do not count for that number that I gave you.
DR. COHEN: Okay, Len.
DR. NICHOLS: I just wanted to throw out a community that I know might be illustrative of some group that has used the data to in gender, pretty broad conversation about health improvement is Rochester, New York. There is a Finger Lakes Health Systems health agency there could come and talk about how they have done that.
DR. COHEN: What we talked about yesterday were inviting Deacon Hodge communities, all the communities that were highlighted in the communities as a learning system report. Was Rochester one of those?
DR. NICHOLS: What Rochester has done is very interesting. Is they have a non-profit in the middle of it and they have gotten all the employers, all the health plans, the hospitals, the major physician groups, the FQHC, community leaders, and they put together out of that a CMMI Innovation Challenge Grant Award and won. It is really cool.
DR. COHEN: We can talk later about how successful they are but we can certainly learn from them. Are there other suggestions? Linda.
MS. KLOSS: I think we had other suggestions from yesterday and Mia was compiling that list.
DR. COHEN: We will integrate this list and Mya's list. Vickie.
DR. MAYS: I would suggest inviting Tessie Guillermo from the Zero Divide Foundation because that is what they do is help community groups to actually be able to utilize data in terms of technology. I think it works with the workgroup. I would suggest inviting Jeff Caballero who is the Executive Director at AAPCHO. AAPCHO has been running a series of healthcare clinics.
DR. COHEN: Can you slow down?
DR. MAYS: I can give her the notes. I got the notes so AAPCHO runs a series of fairly qualified healthcare centers that specialize in small populations and they are working a lot on how to deal with data and share data among the clinic throughout the U.S. Some of which I think are even in the territory areas.
DR. COHEN: AAPCHO, what does that?
DR. MAYS: Asian American Pacific Clinic Health Organization I guess.
MS. KLOSS: They are part of the Community Health Research Network.
DR. COHEN: That was the other thing the Community Health Network Research. Susan, if you have any specific suggestions for communities that are part of that network.
DR. QUEEN: We can give you information on the notes that participate.
DR. COHEN: Could you make sure to give those to either Mia or Cassie?
DR. QUEEN: Yes. I have one more which is this will fit your data use agreement; it is called Campus Community Partnerships. It's Sienna S-I-E-F-E-R-F I think is her last name and they help do data use agreements between communities and academic partnership.
DR. COHEN: Pat and Nancy, do you have any suggestions on the phone while we have you?
DR. REMINGTON: Certainly, I can go back to talk to Bridgett Caplan and their two thoughts. One is the kind of the producer side we have a lot of people we have been working on accessing and arraying data. Then the user side we have lots of experience of people who have used through the County Health Rankings. More so in planning and engaging people sort of a call to action using data to point out problems. We have had less experience with people actually using data for evaluative purposes for monitoring, transfer, awarding performance, etc. We are more on the planning, use of data, call attention to disparities or differences in health. I guess it would help me. I do not need to take your time now, but to get a sense of the type of person you want. More practitioners or more data producers? I would be happy to think about it. The other thing, it is a three day conference and I could find out more about the exact timing and connect with people.
DR. COHEN: Great we do not have time now but to continue this discussion, but if you had looked at the tentative agenda it sort of describes I think the kind of focus that we want. Certainly, the priority is around I think community needs assessment activities, whether than monitoring. I think these suggestions all will be perfect.
DR. REMINGTON: IS that available on a website?
DR. COHEN: Can somebody make sure that Pat gets the draft agenda? Nancy, do you have that draft agenda?
DR. BREEN: I did, but who sent it because I was having trouble finding it earlier today.
DR. COHEN: It is on the SharePoint site if you have access to the SharePoint site. We will make sure somebody emails it to you. We need to stop now to start the full meeting. Thank you all for your participation and Nancy if you have more suggestions just email them in. Thank you all. This is adjourned.
(The subcommittee adjourned at 9:05 a.m.)