[This Transcript is Unedited]
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DR. FRIEDMAN: There are two things that we have to do this morning, and depending on how long it takes to do them we could then turn the meeting over to Vickie to start on the Population Subcommittee meeting or not as the case may be.
The first thing we wanted to do was go through the draft letter that we were going to send out to solicit recommendations and then after we do that, and we have already received comments on it both from some members of the work group as well as I sent it out; we had it externally reviewed as well as a means of trying to do a little bit of reality testing, and then after we go through the letter, I wanted to continue reviewing the detailed final report outline, and Ed and I can, also, summarize the few changes that were made after the June meeting.
So, with that why don't we start with the letter which begins, "Dear Insert."
DR. STARFIELD: You want to sent it to Insert because nobody else will like it.
DR. FRIEDMAN: I am not as skeptical as you, Barbara. Let me just take a moment and summarize the purpose of the letter. The purpose of the letter is to try to elicit more specific recommendations based around the 10 system characteristics that we have listed, and these system characteristics are basically reworking of principles that we have had all throughout this process, and the purpose is to solicit more specific recommendations than we have received because in fact despite having heard from I don't know, scores of people really after going through the testimony and discussions quite carefully while much of it was very helpful, there are really only two or three people who were quite specific in what they were putting forward, and we need more specificity.
So, what we have done is arranged a series of example questions under each of the system characteristics. The questions are just meant as examples. They are just meant to generate responses, and we have, also, invited additional questions and recommendations related to any other issues that folks feel are relevant.
So, with that, why don't I throw it open to Dr. Insert and any of the others of you who want to respond as well.
DR. STARFIELD: I am just thinking you are not going to be able to deal with the responses when they come back.
DR. FRIEDMAN: Thirty-nine thousand, six hundred and forty-three of them.
DR. STARFIELD: Whether there are 5, 10, 20, I don't know that you will be able to make anything out of the responses. How are you going to analyze it? I realize you are not going to analyze it. You are trying to get a gestalt and pick our particular ideas and stuff, but even so I think what I would be looking for if I were a respondent is something pegged to the report, you know, Item XY in the report needs specificity. Could you provide two sentences or something like that, and this is really just not related to the report, and you are going to get yes/no answers, and you are going to get expanded answers, and I just think it is going to be apples and oranges and you are not going to be able to do anything with it.
MS. GREENBERG: Since it is the 10 system characteristics, I mean I share your concern that a minority of people will actually respond in a substantive and useful way though I do think there is a possibility that a minority will, particularly because this is going to some membership organizations that have a very strong interest in the outcome of this report and as I actually had a suggestion in that regard, but this is the, well, first of all you are sending out the outline. So, they could react to that. Then it does --
DR. FRIEDMAN: The schematic outline.
MS. GREENBERG: The schematic outline, Attachment 2. So, that is a fairly compact thing they can react to, Then these 10 systems characteristics are part of the outline of Chapter 5, right? So, it certainly comes right out of the report, but that said, I mean --
DR. STARFIELD: It is Chapter 5C that all the questions are, right?
DR. FRIEDMAN: The system characteristics, not the --
DR. LUMPKIN: That is correct, 5C.
DR. STARFIELD: So, at least you have got to say that this all refers to Chapter 5, Section C.
DR. MAYS: I came at this fairly newer than most of you in terms of seeing lots of iterations and when we were on the phone, Barbara, I kind of had the same response. First of all, it is asking people to do an enormous amount of work which I don't know, I have thought a lot since, yesterday was good for me. I mean it was like I think in terms of really helping me to think about how to do things that then get used and that really involve more people than us to some extent.
So, I, also, thought about that, like sending this out regardless of whether people ought to respond. It is another communication from the group to the outside to let them know what we are doing, and I guess there are a couple of things. It is like, for example, let us just say that I got this, and I wanted something different in terms of your outline, to what extent after I spent all my time doing that will you really change the whole outline, you know, particularly if I am a professional organization, and I am putting in a committee because you have given me time to work and I rush it through one of my committees and they spend a lot of time. It is almost like looking at the asking for responses just to say that we did it and then don't use it, but to the extent to which you are both prepared to really redo this in the event that people have a whole different perspective of what they think and the extent to which you have a process by which you let those people know if you did or didn't use it, why, I think is really important.
DR. HUNTER: Part of my, and I mean I always want to make sure I rather than react try to rethink whether what we said was what anybody would read, and one of the things we were trying not to say is that we didn't really ask; we didn't really intend to ask for comments on the whole outline and because --
DR. MAYS: But if you sent it to a professional organization that is very invested, then I don't know why you think they won't because this is important to them, but you may want to not send all this, if you really don't want people to comment on it.
DR. LUMPKIN: But I think that there is some utility to doing that. First of all, individual responders are going to write their comments and they will select their area of interest, and this gives them a menu of where they can respond.
The organizations that respond, I think we need to know now before we issue a final report if there are some major disagreements as opposed to style or how things are presented for some of the major partners, and I think to that extent we do need to look at these responses.
I am not sure we need to go to the extent of explaining why we are not doing it, but if we have got a major section that isn't hitting it, then we need to really address that in the final document and make those kind of modifications.
To the extent that we take into account what they do, and I think we should, what comments we get back from those, even if they are commenting on the outline, when they see the next draft I assume if they raise major objections we will have to make some changes, even if it is just to mention the points that they are making as part of the discussion in the document and then say that there are some people who are concerned about this, but we believe such, and I think that will make a stronger document and more widely acceptable.
DR. MAYS: So, then you are saying that you are open to changes other than to 5C.
DR. LUMPKIN: Yes.
DR. STARFIELD: I don't think what you said is the purpose of these questions.
MS. GREENBERG: If you say that you find our current schematic outline --
DR. LUMPKIN: The problem is and we ran into this with the NHII and similarly with the hearings, is that if you give people the document they will talk about the document, and we will never get the recommendations, and that is part of the problem is we really need to get down to the point of, you know, in many associations when you have your council meetings you have got the resolution, and you have all the whereas's and then you have the, therefore be it resolved, and the only thing that gets recorded as a decision is therefore be it resolved, but most people want to discuss the whereas's, and we want to get them to focus in on the resolved, what it is that we think ought to be done to change our system, and I think what this letter is attempting to do is say, "Here is the outline just so you know how we got there, but we really need to focus in on what it is that we are going to recommend, and that is why we are really asking for your help now having gone through the hearing process that we have."
DR. STARFIELD: Why not just ask, you know, what are the specific issues within each of the 10 steps in Chapter 5, Section C that are high priority to address? Let us just parse this thing through. No. 1, should a set of fair information practices specific to health statistics be developed? I am not sure everybody knows what a fair information practice is.
Okay, No. 2 asks about the rules already developed under HIPAA. That requires knowledge of these. That requires that everybody knows what rules you are referring to and their relevance to health statistics. I just think it is going to be pretty impossible to get understanding of these kinds of things.
DR. MAYS: It is not like you have 10 points. You have like closer to 25 points because under one you have Q1A which has three things in it, Q1B. This is a lot.
DR. LUMPKIN: Let me perhaps suggest a modification that we would take the 10 areas, the 10 outlines and put those into the body of the language. For each of the 10 system characteristics, one, two, three, four, five, six, seven, eight, nine, ten. Please respond to these and make recommendations.
In Attachment 1 we have listed under each one of those detailed questions, if you would like some additional guidance on making recommendations. So, that way they can take the cover letter. They can just respond to the 10. If they just want to look in more detail to see where we are going they can refer to this attachment. So, it really gives them the option to go into as much detail as they want.
DR. STARFIELD: We want specificity. We want them to recommend specific things that should be done within each of the 10. So, why not just ask them?
DR. FRIEDMAN: Barbara, we included the additional questions as examples of the types of things that people might address. I mean we have now, and I have gone through it in detail, and Bob has gone through it in even more detail. It is a huge amount of testimony and discussion groups and most of those some very good points were made which we tried to reflect and will continue to try to reflect in the final report.
Most of them were at an extremely high level of generality which is also where we have been operating, and I think if it is going to be valuable we really need to get down to recommendations that can be discussed, recommendations that can be implemented and I am afraid that unless we give people examples of the kinds of questions, just examples, that need to be answered we are going to stay at that level of generality.
DR. MAYS: Rather than making it a question, why don't you have issues, because a person then gets this and is going to answer it. They are supposed to go through and do the first point and answer into the questions in the A, B's and C's. Instead what we want to do is educate them, use your questions to educate them about what your thinking is and the level of detail that you want them to think about before they provide their answer.
So, for example, if you do, you know, one, vigorous policies, blah, blah, blah, issues that -- you see, I would refer back to where you got these within the testimony is the people that you are sending it to that gave the testimony or feel as if they are included more. So, then I might say, "Testimony raised a series of issues that fall under this particular principle or whatever it is called, that we would like to get specific feedback. These include for example, in consideration of a set of fair information practices specific to health statistics. Should we develop that?" But I wouldn't put it with question marks behind it so that they don't get confused and then think that what you want them to do is to answer even though you do.
DR. LUMPKIN: Let me just sort of suggest a modification because I think what you are talking about is essentially taking one through ten and putting this sort of in a schematic outline fashion, so that one would be rigorous policies and procedures for protection of privacy and confidentiality, and the first one would be fair information practices, underneath that what?
DR. STARFIELD: Yes/no, and or amplify it.
DR. LUMPKIN: But my concern about trying to put too much more in there, this two pages is daunting enough as it is. If you start adding in, you know, an introductory paragraph for each one of them you now have three or four pages of questions, and right now you can sort of, people like I do when I get these questionnaires, the first thing I do is look to see how long it is, and then decide whether or not I have got time to answer, and if it is a four-page questionnaire there are fewer people who are going to decide that they have time right now to even start.
DR. MAYS: I wasn't exactly going down that path because I am not making it longer as much as I am starting with the introduction that you sometimes do this and by your first question get people kind of acclimated to what you want them to do and then in the next questions you can kind of just then do bullets a little bit more so that they kind of understand, so that in the others you don't have to repeat it as questions such as you have laid out for each one of the issues. It is kind of like if I were interviewing you for a questionnaire at the beginning I would tell you what it is I want you to do and then after that you have the -- it cuts down some of it, but I think at one point you have to say what all this is about.
DR. HUNTER: Going back to what I at least think in my mind we never expected anyone to answer all the questions, and we never expected people necessarily to answer the questions the way we phrased them. What we were really trying to do was to get across something in the conversational sense of okay, we heard that privacy is the important thing, and now, if we are going to do something about privacy in the report we need to get something more concrete than just saying that privacy is important and you need to protect confidentiality.
So, what exactly do you want? You start phrasing the question so that people would get that idea that we are not just wanting to hear back, "Oh, yes, privacy should be one of the characteristics."
I, at least never thought that anybody would answer all 10 major categories and all subcategories, but pick out probably the burning issues that either they presented testimony on or that they think are the ones that we absolutely have to include as recommendations, and maybe we are not getting that across. I mean it would be great if somebody sat down and answered everything, and then thought --
DR. FRIEDMAN: Somebody will.
DR. HUNTER: Somebody will, but I think making some better explanation of why we put those questions in there and that we are not actually asking them as questions of each of them, but these are the questions that we hope to have answers to in the report, and we are looking for input on any or all of them, if people really have --
DR. FRIEDMAN: When I listen to the discussion what occurs to me is that the concerns that Barbara and Vickie have justify why we need to do it the way we have laid it out. I think it will be a nice problem to have that people say, "Oh, my God, do you want me to really tell you what I actually think specifically about this?" You are right. That is just more concerns of why we need to do it this way.
DR. LUMPKIN: But I think that this is an audience that has already gone through the effort of showing up at a hearing. Many of the people did not live in the town specifically where the hearing was at. They traveled to it. They took time to prepare a presentation, and they are somewhat invested in the process because what they gave is reflected here.
So, I think that they are a little bit more committed to filling out this questionnaire than if you just sent it to people cold.
DR. STARFIELD: There are 30 questions here. Each of them requires at least a page of narrative. I mean yes, you don't expect an answer to everything, but the respondent doesn't know that.
MS. GREENBERG: I have some thoughts. One is we could just send this to the National Academy of Sciences. They have all the answers.
(Laughter.)
MS. GREENBERG: They will respond in 2 years, and that will solve that problem. That having been said, first of I really liked John's idea, and I saw Dan's head going up and down about although I realize the questions were in the letter and then you put them back out of the letter, but actually he has recommended a compromise to put the actual 10 things in the letter so you could just respond to that and then have this as sort of backdrop.
Now, I know why you didn't make this like a questionnaire because you don't like people to be limited by the lines or something, but --
DR. FRIEDMAN: We didn't think of these as being the questions.
MS. GREENBERG: I know, but the respondent doesn't know that. It almost would be easier for people if you did allow a little space for them to just fill it in. Otherwise they have to take this, and then they have to sort of come up with their own document and I mean it is kind of overwhelming, but like say under two, what are the highest priority areas for improvement or a lot of these, if you just add a few lines people might write in some things there.
DR. FRIEDMAN: Let me make a suggestion and see how this flies, one of which is as John suggested we throw in just the 10 system characteristics into the body of the letter and say that there are in Attachment 1 we have the 10 system characteristics plus issues that have been raised during testimony about each of them. I think tying it to the testimony is very important and then under each of these perhaps rather than question 1A, 1B, 1C and rather than even having question marks we basically have it as for example, topic or issue, you know, fair information practices specific to health statistics. That would be the issue. Another issue would be appropriateness of rules.
MS. GREENBERG: I would at least put the web site there for the rule.
DR. FRIEDMAN: Sure, but I mean priority areas for research. So, we remove the question marks and --
MS. GREENBERG: And remove the Q1A and all that.
DR. FRIEDMAN: Right. I would suggest that we move that and basically just have issue bullets under each.
DR. LUMPKIN: And then add one issue bullet under each one that isn't there, and that would be one that would have a question mark, and it would be other.
DR. FRIEDMAN: Good, okay.
DR. LUMPKIN: So, it would be simplifying most of these questions to just a declarative phrase of some kind.
MS. GREENBERG: But not allow them to actually write on this?
DR. FRIEDMAN: Right. So, it would be highest priority areas for improvement and level of detail. That would be a hard copy.
MS. GREENBERG: But I assume you are giving them an e-mail address they can respond to.
DR. MAYS: What would be great is if you, also, if you have e-mails for most of them is that you have sent a hard copy, and if you then have it up on e-mail where they can just put spaces in it and return it to you.
DR. LUMPKIN: I think that may be a little bit more complicated, but we could put it on the web site as an electronic document they can download and then put their comments in.
MS. GREENBERG: I think if you give them some kind of format that they could actually put their stuff into if they chose to, I think it would make it more user friendly.
DR. HUNTER: That is fine, and we can add something to the end of the letter, and I don't know how we could do that, but I will say though I think that tends to reinforce that it is a questionnaire. I think what we want to do is channel their thinking to the most specific and practical things, and I think it helps to take some of the questions off. I think what we don't want to do is end up with somebody having a great thought; we don't want someone thinking I have got to answer this question about fair information practices or the HIPAA rule. So, I have got to go read the HIPAA rule before I answer that.
MS. GREENBERG: It would be good for them to do that.
DR. HUNTER: That is not our purpose here, but I don't want to --
DR. MAYS: But it is apples and oranges then.
DR. LUMPKIN: But the way to do that would be on electronic form, and it would be a sheet that would be a recommendation sheet, and it would even ask them to put each recommendation on a sheet and it would be the questionnaire, one through ten or other if they have one that is totally unrelated to any of the 10 questions.
MS. GREENBERG: Do you want to get other with each or at the end?
DR. HUNTER: Each and at the end.
DR. LUMPKIN: So this short form would say, "What is your recommendation?" and then they could put in their recommendation and then it would ask them to give it some sort of category, so which issue and I mean which area of the ten and then which issue under that is this recommendation addressing and a little box for rationale.
DR. STARFIELD: Would you want some priorities though, which are most important and which are less important?
MS. GREENBERG: And another thing I had to say which you can totally reject, but I guess we won't really know until you see what kind of response you get from here, some of these really do require some real though and discussion and everything else, and although I don't agree with Simon that you need to go out and have another hearing to get all your recommendations, it may be that you need to, that if you find that you really don't have enough, if we find we don't really have enough input and we don't want to just do it ourselves, convene some of the, you know, whoever is available to come to spend a day talking about some of these issues in a very specific way.
I mean I can see some of these questions that you have laid out here resulting in a very fruitful kind of discussion with some, you know with these key organizations as opposed to people coming in and providing testimony or responding to the interim report. They know they are coming really to work on helping to develop recommendations. I mean that is an option. I realize that could delay things.
DR. LUMPKIN: I am not as concerned about the deadline. I mean we kind of set an arbitrary deadline, but I think that the strength of this will be to the extent that it can be adopted, and if there is some benefit and that really is the decision that the work go past to make it, there is some benefit of doing the kinds of things that Marjorie is suggesting or even a hearing and we push it back 3 months, fine. We have a better document. We have a better chance of it being implemented, and I think it is worth pushing it off.
DR. HUNTER: I don't disagree with that. I just think what I want to get to the fastest is somebody's specific input that we can then look at and say, "Gee, we don't have input on this set of characteristics," or "We have plenty on these," or "We need to reconcile differences in opinion on these," and that will help us structure a series of 1-day meetings or a hearing or you know, I think to me the worst case will be we will get nothing very practical on some of these, and we will either have to sort of impute specifics from the general testimony we got or put in what our own views are and send it out for comment which we will be doing around the whole thing, but to me the first thing is getting some variation on this out there so we can start getting ideas back and start culling through them and figure out what is the process we are adjudicating.
I guess it is my fondest hope that we could get so much response that Barbara's dream comes true. I am actually more worried that people will hone in on their priority or their issue or their association's fairly specific agenda and that we will have big holes between them, but I am sort of anxious.
I mean we did hear a lot of the same things at the hearings but at a very high level of generality.
DR. FRIEDMAN: We have talked from time to time about convening, you know asking ASTO, etc., and I think in fact we have made clear we are going to send out a draft of the final report to the same folks for feedback. There is no reason why we cannot separately convene some groups to discuss the recommendations. I mean it will probably be the associations and to get more specific feedback and I think, you know, personally, I think that is fine.
I do think that while the deadline is self-imposed as far as I am concerned we have to issue a final report by June 2002 or else this is just going to end up and we are really just losing credibility by the length of the process.
DR. HUNTER: We are going to have to be darn good with what we come out with if we don't have it by then.
DR. FRIEDMAN: It has taken a while. It has been a huge --
MS. GREENBERG: Don't be hard on yourself.
DR. FRIEDMAN: But I mean it has been an extremely inclusive process even by our NCVHS standards, but we still need to get the thing going.
So, I guess what I would suggest is we revise the letter as we have discussed. We send it out. We see what comes back. You know, we proceed as we have said and then in terms of writing the report because the first several chapters, while they may end up being revised on the basis of feedback, they are not independent but they are separable from the recommendations, and then see whether or not we should actually sit down with some of the associations.
DR. LUMPKIN: We need to see the responses. It very well may be that the usual suspects, I suspect like NASAS(?) will give a very detailed response to each of these areas and trying to bring them in then to discuss issues may not be that fruitful.
So, we really need to make those calls based upon the response, and my other suggestion would be that if it is agreeable we kind of get an outline of a way to do and we need to get this letter out. I don't know if the members of the work group want to see the next iteration or if we can just think that we have got it close enough with our description of it to have it go out just over Dan's signature.
DR. STARFIELD: I cannot answer that. Take for example one question, 2C, what are the highest priority sociodemographic elements that should be promoted, you know what kind of responses do you expect people to give you for that? I think they are going to get a whole potpourri and all sorts of things. I mean they are certainly not going to be the --
DR. LUMPKIN: I am a little bit frustrated because I hear you having concerns about this, but what I don't hear are, okay, how do we fix it. Where do we go to try to get the kind of concrete input on recommendations? How do we do that?
DR. STARFIELD: I would give them the main categories of sociodemographic elements and ask them to rank them. I mean if you want to know the answers to this you put it in a form in which you are going to get the most useful information. We know what the sociodemographic elements are. What we want to know is do they agree or is there a wide variability. I mean those are the important things.
DR. FRIEDMAN: I think they know, too. I think anybody we send it to is going to know.
DR. STARFIELD: Everybody is going to say or almost everybody is going to say, "Income, race, ethnicity," okay, and then what are you going to do with that information if everybody says that?
DR. HUNTER: There are two ways of thinking of this. One is if in fact it turns out it is income, race and ethnicity, and we put that in the draft we are going to get comment on whether we were right or not. I don't think, and maybe we don't ask that question if we really think we know the answer. We just expressed putting it in the draft of the final report and we get comment on that. I don't see going to --
DR. STARFIELD: If you get a list of five sociodemographic elements and 80 percent of the people give you that you are no better off than you were when you started.
DR. MAYS: The question is in terms of what you want in here. I just keep saying that it is a lot. So, again, if we took that question it is like do you want them to tell you what you already know because it is not like anybody can come up with a new one that really is going to make sense today, okay? I think this is the essence of this document now. The whole thing is is it what you want. I mean that is what you do when you write a book. It is kind of like what you want, what you think or is it that you are really taking what they tell you and that is the leadership of where you are going with it because that was the question I asked before about if you get feedback what is your responsibility.
So, here are you looking for direction and writing a report from that or do you have a set of opinions about what you think the issues are and you are looking to see how they play out in the field..
DR. LUMPKIN: Let me deal with that in two parts? The first is what would be useful for this discussion. If there are questions like 2C which will ask information that we already know and may not be helpful, just cut it. I mean that is how we trim the list down. I think that is a very good comment, you know, what are they going to tell us that we don't already know, and we may not have already put in the document, but I think the answer, I think what I have heard is this process is a very inclusive process, and the intent is that there are comments that are received that will be, you know, this work group as they go from reports and putting the bones on this document will take into account those kinds of issues, and hopefully we will get a lot of recommendations. It is much easier to get a lot of recommendations and weed and sort and consolidate than it is to get a few recommendations and then try to have to extrapolate.
DR. STARFIELD: I would like to give the respondents the notion that we have thought about this, you know that we are not starting from square one but that we know that there are these kinds of elements. We don't know whether we are missing any, and we don't know the priority which respondents will give to the various elements.
So, what we want to do is put down what we already know, ask them to rank them and then ask if there are things we have left out.
DR. LUMPKIN: But wouldn't the first question be is you ask whether or not there is even value to doing that?
DR. STARFIELD: I think there is value. I think we should send out a questionnaire. That is not the issue.
DR. LUMPKIN: No, no, I am looking at that particular question. There are other areas. Clearly the first question about privacy and fair information policy, there are lots of questions there about should we recommend the fair information policy as applied to vital statistics and to health statistics.
DR. STARFIELD: Who is going to say, "No," to that? Do you think anybody will say, "No"?
DR. LUMPKIN: Oh, yes. I am not sure personally that my answer is that they should apply. Maybe we need to have a specific set and it gets down to --
DR. STARFIELD: A specific set of fair information practices?
DR. LUMPKIN: A separate group of policies for fair information as applied to population-based statistics.
DR. STARFIELD: That requires everybody to know what you mean by fair information.
MS. GREENBERG: I really don't think you can ask this question about fair information practices without at least a few sentences as to what they are.
DR. LUMPKIN: Or we can refer them to the appropriate page of our privacy document by giving the web site, web location and the page number.
MS. GREENBERG: I mean basically fair information practices are you tell people why you are collecting the information, what you are going to do with it. You know you give them just the basic information which most people don't have in this country.
DR. LUMPKIN: It, also, involves consent.
MS. GREENBERG: It can involve consent.
DR. LUMPKIN: And I am not sure that people should have consent in relationship to --
MS. GREENBERG: It doesn't have to involve --
DR. LUMPKIN: But anyway --
MS. GREENBERG: That is exactly the point.
DR. MAYS: I think if you were specific about that, that leads you further because it is like unless you are part of a really inside group here I am not sure. It is back to apples and oranges. I am not sure should a set of fair information practices, what are we talking about here? You and I may talk about different ones. You say that it contains consent. I say, "It doesn't."
MS. GREENBERG: That is why I actually think Barbara is right, that for each one of these, and we could make it longer, and I know this is going to delay it, but it needs a little intro that kind of says, "These are the issues," or "This is what we think is important, and this is what we have got here." Now, we have made it much more specific so that it really rather than kind of like we are a tabula rasa or something. We are just an open page here. It does need something like that, but actually I think it could be written, you know, it doesn't have to be a treatise but --
DR. HUNTER: To me that is the issue. I think there was a fork in the road and I think we elected to go in the direction of not finishing the writing of the things and explaining why we thought things were important and to talk about what we might recommend and to judge what the outcome would be that way and then to ask for more specifics on implementation and road map, and instead we wanted to go out and say, "Hey, we understand what is important now, but we don't have enough input on what to do with it," and tried to do it this way so that we really appeared and are I think open to people suggesting specific ways we can go down this road.
I think to go more in the direction that you are suggesting to me would mean go ahead and write the report, take the next 3 months and then ask for comment on the report and if we don't have enough specifics in our own testimony and other knowledge we have gained through the process then we throw that out for comment, but I think that is a very different path.
DR. LUMPKIN: There is a fine balance between people getting this and saying, "Why are you asking me; you have already made the decisions?" --
DR. STARFIELD: Yes, you are supposed to be thinking about this, you know. I will be glad to give you reactions.
DR. LUMPKIN: No, but I think there are people and I will just take it from a state perspective. We believe that the Federal Government in too many instances come down, and they have already thought it through and then they ask us, "Oh, what do you think about this?" and our response is "Let us be involved in the beginning."
MS. GREENBERG: They have been ad nauseam.
DR. LUMPKIN: So, the point is as a Committee and the fine line we are trying to walk is we want them to be involved in the beginning. That is why we are asking. We are not sending out a set of questionnaires to get answers back and then say, "We just wanted you to comment. We are going to do what we wanted to do anyway." We are actually saying that we haven't developed a set of recommendations. We want your help in doing that. We want you involved even before we start listing recommendations.
MS. GREENBERG: Okay, let us just say what do we lose by doing this, I mean revising it kind of around some of this discussion and everything, but what do we lose? The only thing we might lose is that you can only go back to people so many times, but those who are interested will still review the final report even if they have or have not responded to this. I don't know that there are any big risks really.
Those of you who have been most involved in working on the report really feel like you could get some useful input on this. I mean I am willing to defer to you on that where some of these changes, I mean whether I am willing to or not I am not the final word here, but with some of the changes that we are mentioning and see what happens. I mean what do we lose? We lose maybe a few months and possibly annoying some people but the trade-off is that you annoy them more because you just to come to them with everything more tied up in a bow and didn't give them a chance for initial input. So, I think with some of the changes we have talked about it seems to me like it is not a high risk venture.
I have a few suggestions about the letter. Are you receptive to that?
DR. FRIEDMAN: Absolutely.
DR. MAYS: I don't want to go to that yet. I want to go back to this and just be on the record and then we can move on. I do think that the concern of the extent to which you know what you are getting is an issue, meaning that for example without kind of being more detailed it is not like the suggestion was putting in the recommendations but it is being more detailed relative to specifically what you are asking, and so that when they answer you have a better sense of what they are answering to some extent. So, to me the down side is you get a lot of information and you don't have a clear sense of direction from the information and you are not any clearer about the subject matter. It is like having testimony again to some extent in the sense that they are giving you like, I don't know, kind of more discussion about it, but you didn't get them to kind of weigh in in terms of either a priority or a ranking or a direction, and that is where I think you take off in terms of a recommendation. So, to me that is the only down side.
The process of who is really making a decision versus the decision making because of the voice of the way in which they gave you the information, and I just want there to be clarity that when you come back to people I think when you do this you should be clear about your process of how you are going to use this. I think, also, at this point given yesterday I realize there are so many different products that you think you are going to develop, I think you should be clear about how you are going to use the information they give you so that people don't feel that they gave you something and thought it was only a report and then later they see you have got a book going or you have got this or that. I think you need to be out there with your process so that everybody is with you. So, that to me is the only thing.
MS. GREENBERG: That is why I think if you have a little something, a little discussion at the beginning of each one that kind of directs them to the most important thing, if you could just really, you know, on each one there is something that is like most important. I mean like on No. 3 what is really important is just what are the trade-offs, it seems to me between trend data versus you know being able to get new stuff and respond to emerging issues and you know, No. 2 is just really what role should the Federal Government have when it comes to trying to get greater level of geographic detail, but anyway I will try to think about this somewhat on the plane going back, too, but for the letter I was just going to suggest kind of following up on what, I had already written it down, but something you said, Vickie that I think since in many cases this is going to the representative of an association who provided testimony I would add a sentence something like if you are affiliated, but some of these are just academics out there, but if you are affiliated with a membership organization we would encourage you to find ways to obtain the input of your members into your response, but then I mean you have got to give them enough time, but you don't really so much want Delton Atkinson's response. You want, you know, maybe he could just get together a little group or something like Magnotto developed a group who responded to the HIPAA standards. Professional associations can do that fairly easily.
DR. HUNTER: I would guess that that is a very small number, small proportion of the total mailing list. So, we may want to just pull those five or eight out.
MS. GREENBERG: Okay, yes, I haven't seen the mailing list.
DR. HUNTER: I think most of the people who came were individuals.
MS. GREENBERG: I thought quite a few of them represented associations. Now, the other thing is I mean I had suggested I think at dinner to Dan, and he was receptive to that that we send this to the consortium, the Public Health Data Standards Consortium Steering Committee members. That would be useful and some of the organizations like this have questions about standards and some of them would want to respond. They are all associations.
DR. HUNTER: I don't know if NANO(?) did, but the others ones did.
MS. GREENBERG: NASAS did, ASTO did, NACHO did probably, but I mean the consortium is 33 organizations. Every one of them is an organization. There is not an individual among them. The fourth paragraph starting with "Since," the NCEHS editors have taught me that you don't say, "Since," when what you mean is because. Since is temporal. Because we are anxious --
DR. STARFIELD: They learned that from Cara Weiss. I am recommending the following rewrite for this sentence. You can write it differently, but because we are anxious to make the recommendations in the final report as specific as possible, please indicate each of the steps you feel should be -- oh, this sentence is hard.
DR. STARFIELD: May I interrupt you while you are thinking? I don't know what a step is. There are no steps here. So, you need to change that.
DR. HUNTER: Actually we made several revisions to this because we found that in the earlier draft we were asking them for their recommendations and that sounded like we were asking them for their recommendations on what ought to be in the final report when what we are asking for is their recommendations on recommendations. So, we tried to use a different word. Steps may not be right, but --
MS. GREENBERG: Why can't you just say for each of your recommendations please indicate --
DR. LUMPKIN: Marjorie, I have got to run, but I just wanted to make this suggestion. I don't think it is going to be you know, at least following up from Simon's comment that the best use of your time here in Chicago to word smith that last paragraph.
MS. GREENBERG: Right. It needs work. I was just going to suggest where you use participants here to refer to them as partners.
DR. MAYS: I was actually going to make a broader suggestion because I think it may be the closeness to, and I had thought about it for the letter but for this is that if you have an editor I think that to shorten it and crisp it, I mean the editor is going to ask you a set of questions that will make you say, "No, this is what I want," and I think that the editor will bring it down quite a bit. Now, that is a possibility, but I think that if we do that then, also, the letter, I think a fresh person coming in who is clearly a writer will just shorten it for you and make it real crisp. That would be what I would actually suggest is in terms of everybody's comments, if you have an editor, use him.
MS. GREENBERG: I will e-mail you my other suggestions.
DR. STARFIELD: I don't think recommendations is the right word either because you haven't written a section on recommendations. Implicitly I have criteria for questionnaires as a researcher that I apply to this and basically it doesn't meet the criteria.
DR. FRIEDMAN: It is not intended as a questionnaire.
DR. STARFIELD: I understand.
DR. FRIEDMAN: It is absolutely not intended.
DR. STARFIELD: But there it is. It is a questionnaire. It may not be intended, but it is.
MS. GREENBERG: It is certainly formatted correctly although it doesn't allow for responses with Q/A one, two, three.
DR. FRIEDMAN: Here is what I suggest. First of all we get it. Second, we put in the 10 system characteristics in the body of the letter. Third, we --
MS. GREENBERG: You might want to reverse that, I mean kind of do the letter, make the changes that we are discussing, then get the other two.
DR. FRIEDMAN: Yes, and third --
MS. GREENBERG: You know a few editors.
DR. FRIEDMAN: We know a few editors. Third, we make clear that the issues that were developed, the issues that are going to be listed in narrative fashion, not in question fashion under each of these were issues that arose during testimony during discussion groups, etc.
Fourth, the other thing that I would suggest is we take out anything that upon review we think may not be self-evident such as fair information practices. That is something that I happen to take as self-evident, but clearly I am wrong, and I think if it is not self-evident we try to find other language such as I don't know, policy, confidentiality and privacy policies or some such that would make it more self-evident and then under each of these --
MS. GREENBERG: I would say though something like policies about notice, use, consent. I would actually list some issues.
DR. FRIEDMAN: Good, and any suggestions would be very much appreciated.
DR. HUNTER: Not to go through each of these but as an example in that first case, Q1A will just be a bullet. The issue I think is given that there is a lot of discussion of medical records, privacy issues and human subject issues is it important for us to have a separate set of policies and procedures unique to health statistics or it is sort of are the issues, I mean we tend to feel that they really are different and unique in some ways and we need our own set of rules to govern that. Maybe other people don't agree. Maybe that would be too confusing to the field to have all these different things.
DR. MAYS: I think just saying it just like that is the way to go because I think that you put them in the domain of where you want them to answer and they will ask them a lot of other things, but they answer and lead you to where you want to go.
DR. HUNTER: You mean without question marks? I know this sounds silly but --
DR. MAYS: No, no, no, without question marks. It is almost like you would say something like based on what we heard from you in testimony, letters, whatever, what we have arrived at is a set of issues. What we need at this point in time is more specificity about those issues. Let us share with you what some of those issues are in the area of fair and whatever, maybe fair information practices concerns arise around blah, blah, blah and can you give us some guidance on what specific recommendations we should consider, and so you put like his sentence in there. I am trying to make this a lot more friendly to get people to want to do all this stuff.
MS. GREENBERG: It does have a question mark at the end.
DR. FRIEDMAN: But not a question mark at the end of each issue.
DR. MAYS: Exactly. Instead it is like what I am doing is I am presenting you the issue and then asking you the question to share with me what your thoughts are.
DR. FRIEDMAN: I don't see how this differs so much from what we have got. We say here that this is based on the input we received from you during the process with reference to the report and now we want to make these things more concrete. Take a look at these and help guide.
DR. MAYS: Okay, what is different is, you know I have got to ask a question about this. Some of this is like for example when you say that we are now working to make these broad outlines more concrete to drill down in more detail in each of the system characteristics so that we can include specific and attainable recommendations in the final report. I have got to go back. I am lost. You want to drill down in more detail each of the 10 system characteristics. I haven't seen them yet. So, I have to go back. So, we are saying the same things. So, it is like I don't want you to get defensive but --
MS. GREENBERG: It is like Simon said yesterday. You don't have any of my issues, at which point he goes through all of his issues every one of which is in the work plan. I could say what I am saying if he hadn't given me the ability to say it, but what I am saying is when I read it for the first time because I didn't write it what I have to do is stop and think okay, the test system is what; we did have testimony, but what was it? Oh, that is right. So, what I am trying to do is, I guess it is almost like what Barbara is saying. Maybe I am being a bit of a researcher, but I am trying to keep as many people with you as possible and want them to be excited about giving you the information and that they don't put it on their desk and not do it or that they don't and they send it to the staffer in the organization who then before they can send it out it comes back to them for a lot of direction.
DR. FRIEDMAN: You are making it sound more user friendly. If you could put the paragraph that you said before, if you could just jot some version of it down that would be helpful because quite seriously we are talking in terms of concerns that have arisen during testimony, and you know, we would really appreciate your guidance on those concerns and developing recommendations based upon the concerns, etc. I am more comfortable with that kind of wording especially since many of these people we know and essentially what we are really talking about is, I think that would be a real improvement.
DR. MAYS: I am not only worried about the wording. Let us take the fair information practices issue.
DR. LENGEVICH: Let me make a comment and then I do need to run, and I will dial back in as soon as I can. I guess I have a question first and that is some of the issues I like the way this discussion is going, and I think it will really help the letter and the response. Some of the issues within the 10 points now I get the sense from the conversation that some are, you already know what you want fair information practices, for example. You already know that you are looking to include those, and it is not really whether to include them or not.
What you are asking for is details about them. That is my question or the assumption that I make the statement on which is if that is the case then go ahead and put in there which issues you think are really important and give them the opportunity to make comments about them, give details about them. In other cases there may be issues which you are not quite whether they should be included or not and that is a yes or no question to them. Should we include such an issue? So, as you develop those bullets I think there may be two different types of bullets. Does that make any sense? It is hard coming across here on the phone.
DR. HUNTER: One of the process things, sort of the protocol things here was that we are trying not to include a signal as to what recommendations were going to be in the final report since the Committee itself hadn't actually come to those conclusions. This is still signed by Dan as the work group chair. So, I think part of why we phrased all of these things as questions even though we might have opinions personally is that they are not Committee recommendations yet, and we didn't want to voice them as such, that the 10 characteristics were all things that are thoroughly consensus things that were in the interim report that was cleared by the Committee and the other partners, and we were hearing them in testimony. So, I think I am a little uncomfortable in some respects writing these intro paragraphs to the 10 system characteristics because they start to suggest that we have arrived at a conclusion, and we just want people to fill in the detail for us.
DR. LENGEVICH: Was there any widespread agreement among the people who testified about these particular issues and could it be framed as such not necessarily as a recommendation from the Committee but that there does seem to be widespread agreement about selected issues?
DR. HUNTER: That is a possibility. I think in that case we might want to take a different example here because we are spending a lot of time on this one, but the widespread agreement was that there ought to be real special consideration to privacy and confidentiality, but I don't think we heard a whole lot other than a person or two mentioning fair information practices but not really crystallizing the issue in terms of health statistics. We didn't hear anything very concrete. So, we were trying to elicit the concrete, and I don't know how far we can go in expressing what we already know and what we have concluded here before we are running afoul of the larger Committee's process.
DR. STARFIELD: I am more confused about the fair information practices now than I was half an hour ago.
DR. LENGEVICH: I think to the people who have testified it would be helpful to know, well, we have already commented upon this, and there does seem to be fairly widespread agreement about it among the testifiers. So, we are looking for more details rather than just any kind of comments on it.
DR. FRIEDMAN: Gene, let me just echo what Ed just said because in fact, for example, what we heard about privacy and confidentiality was for the most part it is really important and we need to focus on it, and we as a society need to achieve a bit of balance between the good of health statistics and the good of privacy and confidentiality.
DR. STARFIELD: I don't understand that, Dan. Look at the definition of health statistics, data that characterize the health of a population. Now, why in the world would you think that fair information practices should be applied to data that apply to a population? There is no individual issue in there at all. So, it is not the health statistics that are to be subject to the fair information practices. It is the process of getting the health statistics.
MS. GREENBERG: It is the dissemination of them, too, because --
DR. STARFIELD: If there is no individually identifiable data what is the issue?
MS. GREENBERG: Maybe that is a problem with the definition. Health statistics includes micro data that --
DR. STARFIELD: But it says, "Apply to the health of a population."
DR. HUNTER: Say your population was three. What do you do to disseminate?
DR. STARFIELD: That is not what you mean by population.
DR. FRIEDMAN: Things for example that I worry about include linkage of identifiable data, linkage of identifiable data where the individuals have not given prior consent to linkage. I worry about small cell size in small towns.
DR. STARFIELD: We do, too, but you have to tell people when you are asking about their information practices that this is what you are talking about. You cannot just say, "Health statistics characterize a population," because it is obvious you don't need fair information.
MS. GREENBERG: I think with fair information practices you have got to mention some of the issues about notice, consent, etc. With the HIPAA --
DR. STARFIELD: There is a possibility of identifying individuals. That is the critical issue.
MS. GREENBERG: Or where you are going to be doing linkages or whatever. Then on HIPAA you need to mention some of the issues because I have heard these come up as to saying that public health needs to be possibly, you know, adhering to them, and I think we need to get some response like minimum necessary. Should this whole idea of minimum necessary that is applied in the medical records, I mean does this have a role in health statistics? Consent, again; what are the ones that the Privacy Subcommittee is holding hearings on? It is research, minimum necessary, consent and marketing. I don't think marketing is particularly relevant to health statistics, but I mean I think you need to actually mention some specific issues. Then you might get some specific feedback, but we have probably beaten this into the ground. So, I am prepared to send you some stuff on e-mail. So is Vickie. I don't know if Gene is still there if he will.
DR. LENGEVICH: Yes, I am here, and I will send something, but I will take the opportunity now to sign off. I will call back in as soon as I can.
DR. FRIEDMAN: Thank you, Gene.
DR. HUNTER: There is an alternative to make this simpler. I mean in that fork in the road thing one way was write the report and send it out, and the other was what we thought was this, but we could actually I mean this makes it very clear that this is not a questionnaire. It, also, minimizes that we would actually lead them to specific answers. We could actually make this as simple as, hey, we heard you say, "Privacy and confidentiality," now tell us what you meant by that and be more specific. We don't necessarily have to phrase these questions. I mean we thought the questions would help them focus on what it was, what the level of detail was. I really do feel that I would say maybe we drop the one on HIPAA if it is too hard to explain in this, but I don't think we can turn this into a descriptive piece on each of these issues because then to do that we would have to do a third of the work towards the report. I mean just the fair information practice one to explain what we mean by all these issues to do with linkage and stuff takes us -- it is not worth the work it takes to do that letter in order to get recommendations. We would be better off waiting and writing the report.
DR. MAYS: Don't we have some areas in which people commented on within that context of fair information practices and that that is where you want to use your term and the letter draws out, rather than just, you know, it is not like having a new broad open discussion but instead about what are the specifics that you heard. Is it around informed consent, confidentiality or even if they haven't told you and they told you generally your expertise from sitting on this group and your work would give you some ideas of what they are possibly concerned about and putting that in so that you know recommendation-wise how specific to get in a recommendation. So, I think you could do that.
DR. HUNTER: A lot of these other ones and maybe the fact that they are ordered this way has led us into this discussion more. Most of the other ones are much less in need of explanation because the questions are really just what do you think are the highest priority areas that should be recommended first. I mean that doesn't require a lot of explanation. It is these first two where we talk about the details.
DR. MAYS: There is a couple of other places, for example, and again it just may be I wasn't there; so, I don't know, but when you talk about the enterprise, the health statistics enterprise, I am not sure I know what you are talking about there, because at some point you get all the way down to support services. I don't know if you are then extending enterprise all the way down there or if you are talking about enterprise being much more where we are really dealing with the enterprise or the statistics themselves or the enterprise for the support of getting the statistics. So, I mean there are some places where I am unclear.
DR. STARFIELD: I think I have a problem with every question here, even take the one what are the highest priority areas for improvement, the level of detail. Anybody in their right mind would say, "Oh, it is not important." I mean you haven't asked them rank these following in terms of your priorities.
DR. HUNTER: But you actually see a final report where we would want to recommend in rank order?
DR. STARFIELD: Then you don't need to ask this question if you are not prepared to do that.
MS. GREENBERG: I think we already decided we might just eliminate that question but have --
DR. HUNTER: Two C is better than 2A, but that means there is a problem with 2A, also.
DR. MAYS: Just the other term that I have a problem with is, because I am not sure who you mean by data suppliers. There are some areas where I just don't know the universe of your thinking. I don't think you really want them that low in terms of who the data suppliers are.
DR. STARFIELD: Some questions are specific questions. One D, I think is a specific question because you are asking do people have experiences where they have been able to resolve that, and it would be nice to know that someone has solved it, probably not.
So, it is a very specific question. Are there specific ways in which the need for small area local data could be reconciled with issues of disclosure.
MS. GREENBERG: You like that question?
DR. STARFIELD: That is a question I like and I think Question 1A is, also, you know you are asking for people's experiences and it would be nice to get some positive ones.
DR. HUNTER: I am sorry which one was that?
DR. STARFIELD: Question 1D and 1E are asking them for a specific piece of information. Do you know of an example, and I think if we could make others like that.
MS. GREENBERG: Two D is the same way. On No. 5, I don't want to word smith, but it is substantive about just what that principle or whatever is. Are we talking about integration of data sets or integration of users, producers and suppliers? It says, "Broad collaboration and integration among data users, producers and suppliers at local, state and national levels to ensure efficiency and maximum analytical utility," but the first question is are there specific steps that should be recommended for the integration of data sets.
DR. FRIEDMAN: Look at the second one.
MS. GREENBERG: That, also, I think linking data to producers and suppliers isn't quite the right word either because link is such a charged word. I was going to suggest that maybe you rephrase five as broad collaboration and integration among data users, producers and suppliers at low-dose data national levels in developing data sets or broad integration linked data users, producers and suppliers, yes, in developing data sets to ensure efficiency so that you get the data sets into the principle and then it makes sense that the first question or issue has to do with data sets, and then I would say, "Other specific recommendations that might better, that might improve communication between data producers and suppliers or something." Linking data producers and suppliers doesn't make a lot of sense to me. Really I assume what you are talking about there is improving their communication.
DR. FRIEDMAN: I had not thought of this as being specific to data sets actually.
MS. GREENBERG: You hadn't thought of this as being specific to data sets? Then I think you need to get rid of the first question.
DR. FRIEDMAN: Yes.
MS. GREENBERG: Okay.
DR. FRIEDMAN: If it includes data sets and other things in a way we get rid of the first question and we might add other questions to encompass all the other things. I think it is possible you would have collaboration on analysis or in systems issues as opposed to data set issues where we were talking earlier about how you might collaborate across states on the infrastructure for creating birth data sets that come out of hospitals, but it is not the data set itself that you are communicating and linking up these producers. It is the software or the specs or something.
MS. GREENBERG: If the integration is really about people and then for various purposes, fine, but it was confusing to me with the first question being about integrated data sets when we are talking about people.
Also, if you are going to have questions on timeliness I mean I think what you really want to know is should we try to define timeliness in the report to people; can they recommend any bench marks, you know because timeliness is such a vague -- I served on a timeliness committee once at NCHS. It was after my service on the periodicity committee. What can I say?
DR. FRIEDMAN: Sort of contrary issues.
MS. GREENBERG: What I am afraid is going to get lost is although you mention it on the front page about drivers and all of that, I think you are going to lose that completely.
DR. FRIEDMAN: I think you are right.
MS. GREENBERG: If it doesn't get integrated, but I think particularly on this evaluation one it is important to ask people who should be responsible for the evaluation and what should be the balance between internal and external evaluation. So, anyway I will send you those.
DR. FRIEDMAN: It sounds to me as if you know clearly this needs to be rewritten and restructured. It is not going to be going out this week, and so, what would be helpful, I think we will proceed with what we have heard just on an interim basis. It would be extremely helpful if people could send in specific suggestions around wording, specific suggestions around the issues and simultaneously with that we are going to go back and change the structure in the letter as we discussed. We are going to change the questions to non-questions and edit and lose some of them and then if there are additional questions, what i would appreciate is if you can for the moment work with what you have. We will continue working with this and then when you send us comments on this, we will incorporate it into where we are, and we will send it back out again.
DR. STARFIELD: When do you expect to have the results if I promise to respond quickly given the fact that you are going away? I mean what is the time frame?
DR. FRIEDMAN: Let us put it this way. We have had this on the board for -- we have been trying to do this relatively rapidly, and this is the second iteration of it. I will if I can and I don't know about Ralph and Ed, but I will try to do some work on Friday. I may or may not be able to. I am not going to work on it. I don't think I will work on it while I am on vacation. Maybe I will, but I really think we need to get something. I mean we initially said that we needed to get something out by mid-August. I would say that now we need to get something out by September or else we are really going to be --
MS. GREENBERG: It would be nice to get something out right after Labor Day. August is a dead time anyway. Right after Labor Day but you have got to give people a minimum of 4 weeks.
DR. FRIEDMAN: That is what we initially had thought we were going to be giving them, 6 weeks.
MS. GREENBERG: Or they won't take you seriously at all.
DR. STARFIELD: I agree. If we get it out on September 15, we can ask them to have responses back by November 1, which is not what we would want, but we still have plenty of work we can do. Ed and Rob and I have plenty of things we can do to occupy.
MS. GREENBERG: Speaking of Ed, was he going to call in?
DR. FRIEDMAN: I think he had something about child care or some such, but no, he was not going to call in.
DR. STARFIELD: I am trying to think when I can do it. If it is within the next 2 weeks I can do it quickly, but there is a week there before the next meeting that I cannot.
DR. FRIEDMAN: I don't think we will send anything out before Labor Day.
MS. GREENBERG: You mean to the group here?
DR. FRIEDMAN: To the group, yes. I think it is unlikely that we will, you know, maybe I will have 20 minutes or half an hour to work on it on Friday. That is it. I am not going to be able to spend any more time, and we are not going to be able to shoot it back and forth among the four of us, five of us.
DR. STARFIELD: You have heard my comments in detail.
MS. GREENBERG: Are you traveling the beginning of September?
DR. STARFIELD: I will be away the Labor Day week, and I won't be able to get anything either.
MS. GREENBERG: I will send you my stuff.
DR. STARFIELD: I will send a letter and I will wait for the iteration of the other part.
DR. HUNTER: The thing that might be most useful, Barbara, because we only really talked about the first couple, if you could just either mark up or send notes on the rest of the 10.
DR. STARFIELD: Okay.
DR. HUNTER: Just things that you really were offended by and then we could make sure we focused on those because I suspect it is going to look very different but I would hate to send something back out for comment that included something you found --
MS. GREENBERG: Okay, so, I should focus on three on or something like that. Which ones do you think could be useful and which ones do you think really are not worthwhile?
DR. FRIEDMAN: And this actually is -- I am looking at the calendar. This is not going to go out by the fifteenth of September. I mean Labor Day is the third. We will be fortunate if we can get a revised version out to you by the end of that week, and I am going to come back to hundreds of e-mails like everybody else, and people outside my room with personnel problems all 163 of them.
MS. GREENBERG: Is that how many people are in your --
DR. FRIEDMAN: Yes.
MS. GREENBERG: There will be a few who will have been on vacation, too.
DR. FRIEDMAN: But not enough, but in any case to me it sounds realistically that chances are we are not going to be circulating it until sometime the following week and then it would be extremely helpful, and now I don't know if we need another conference call or not, but what would be --
MS. GREENBERG: We have to commit to a very quick response.
DR. FRIEDMAN: If we need another conference call we could certainly do that.
DR. MAYS: Why don't you plan to have it so if it needs to be it is there and if not we can always cancel it, but it will be too hard to try to do it if it gets too close to that.
MS. GREENBERG: During what period of time?
DR. MAYS: Near the end of the week that you think that you are going to send it, it gives us some time.
MS. GREENBERG: So, we are talking about the week of the fifteenth.
DR. FRIEDMAN: The week of the seventeenth. We have got a CDC meeting at the end of that week. I would suggest we try to put the conference for the seventeenth or the eighteenth. Why don't we try to schedule for the seventeenth or the eighteenth.
DR. STARFIELD: I cannot do the eighteenth but I can do it the seventeenth.
DR. FRIEDMAN: Okay. That is a Monday, but what would be really helpful is getting written comments back. I mean from my point of view what would be most helpful is we send it out the week before or the end of the week before that. We get written comments back during the week of the tenth and hopefully maybe there are few things we need to clear up in the conference call, maybe not and hopefully then we can send it out.
MS. GREENBERG: Should we set a time?
DR. FRIEDMAN: Sure, 2 o'clock.
DR. MAYS: I know I have something that day, but I don't know when. Actually could we take a 5-minute break?
DR. FRIEDMAN: Sure.
(Brief recess.)
DR. FRIEDMAN: The other question is that we are going to go through this document labeled shaping the vision of the 21st century health statistics final report outline, and we are going to have to do something about it and I talked to Ed last night about changing the name of the report, but in any case having said that, Barbara asked us to try to summarize what has changed since the June meeting in the outline and maybe what I will just do is sort of go through very, very quickly and see if I can reconstruct.
In the summary one of the things that we were asked to do was put in what I think is a new A, what are health statistics, and a new B, why are health statistics important, and so that is included now. I think that is about it.
In the preface Barbara had suggested that we put an abbreviated definition of health statistics which we will put in the preface and then also in, let me see, I am sorry if I am skipping around here a little bit. In the stakeholders we were, also, --
MS. GREENBERG: What page is that?
DR. FRIEDMAN: Preface C, Page 2. We were, also, asked to put in not only a list of the stakeholders but also why the report could be helpful to the stakeholders. We have done that. I think that is it for the changes in the preface.
I think we have fleshed out the stuff. I think what we fleshed out is relatively minor, frankly, in the preface.
In Chapter 1 we discussed some, we had suggestions for specific vignettes and we have just essentially listed those. The vignettes would be very brief. I mean we would basically be talking about a paragraph each. I believe that Chapter 2 tinkered with the definition of some calls, comments and others but nothing big.
Chapter 3 we added in a very preliminary fashion in Section B1 more of a description of the model and I think that is really, I think those are really the changes that were made in response to the discussion. If I recall correctly which I may not I think the discussion at the last work group meeting ended at the bottom of Chapter 3. So, I think what we should do now is pick up with Chapter 4 and then --
MS. GREENBERG: You don't want to have discussion of any of these other chapters?
DR. FRIEDMAN: It is up to you.
MS. GREENBERG: Could we put like a time limit, like just 15 minutes or something?
DR. FRIEDMAN: On the other chapters, preface through Chapter 3? Sure. Fine. So, we have until ten-forty-five for summary through Chapter 3, and then we will start with Chapter 4.
DR. HUNTER: With the opening for anybody to give any additional comments at any time.
DR. FRIEDMAN: Of course. I think what Ed means is we welcome comments on any part of this at any point along in the process. So, it is not as if this is 15 minutes.
DR. HUNTER: Ten-forty-five is not the end of commenting on Chapter 0 through 3.
DR. STARFIELD: So, are we going to read this for the next 15 minutes?
DR. HUNTER: No, if anybody has any comments about the preface and Chapters 1, 3 and 3, now is the time, and you must have had some if you asked that question.
MS. GREENBERG: I had a few. It is hard, you know, to see how like this business about the NHII is going to be in context obviously because you know I think you just popped in here what you got from the --
DR. HUNTER: Yes, we just popped it in.
MS. GREENBERG: It is obviously very dry. I just want to say that we need to make the point here about what the relationship is between the Health Statistics Division and the NHII and that it can be different parts of it. It can be the community but it can include provider data and probably does include personal, I don't know what, but I think it is going to be, and maybe here the editor will be helpful, too, but it is going to be somewhat of a challenge. We don't want people to get bogged down in this stuff here, but I really think if we can just make that point about how it is part of this bigger vision for a national health information infrastructure and I would recommend not going into too much detail about the NHII, just referring to the report.
Preface. I have a problem with the word "reflexiveness." It is not a word in my vocabulary and if it is not a word in my active vocabulary, I am assuming, I mean it is not that I can't sort of figure it out in context, but I am assuming it is not a word in a lot of people's active vocabularies.
DR. FRIEDMAN: Preface, right, got you.
MS. GREENBERG: It is harmed by a lack of clarity almost but I am not quite sure what you meant by reflexiveness, but I would recommend against it.
What about the public? I think somehow we have to make a case that the public is one of the stakeholders in the health vision.
DR. FRIEDMAN: I agree.
MS. GREENBERG: And actually health statistics really should be helpful to the public not that NCHS is dead. Obviously under 3 you don't want to say, "Now and in the 21st century," since we are already into the 21st century.
DR. FRIEDMAN: D3, the last bullet.
MS. GREENBERG: I think for sure we are now in the 21st century. These are minor. I noticed that B and it may be earlier, sometimes you have used --
DR. FRIEDMAN: Chapter 1?
MS. GREENBERG: Chapter 2B. Sometimes health statistics is singular and sometimes it is plural, and so, that is just a general, like I noticed it there, but it may be elsewhere, too. I think we are using it as plural, right? Health statistics allow us? So, then we have to say that health statistics enable us, and then if we are talking about Americans in rural, suburban and central city areas it should be among rather than between, but that is small.
Down here under C, the health statistics enterprise is systematic and organized, public minded though does not necessarily involve the public agencies. I wasn't quite sure where you were going there and what the "it" was. The health statistics enterprise certainly does involve public agencies.
DR. FRIEDMAN: It means it wasn't restricted to public agencies.
MS. GREENBERG: Okay. Here is where I asked a question that I think I mentioned yesterday. What about international? At minimum I think there needs to be some discussion about how the health statistics enterprise in the US has engaged in the international health statistic process. It needs to look at and use or modify international standards or at least be clear when it is not using international standards.
DR. STARFIELD: Where are you, Marjorie, Chapter 2 what?
MS. GREENBERG: This is in Chapter 2 that I wrote these comments and I am not quit sure where it belongs but when I got through the entire document I realized that I hadn't seen anything about international and that I felt that was missing, not that we can develop a vision for international health statistics, but our vision for health statistics has to include --
DR. FRIEDMAN: I think that that would belong in Chapter 2C.
MS. GREENBERG: That is where I wrote it. That is what I think, too. So, as I said about engaging in health statistics activities, in standards activities and either using international standards or adapting them or being clear why we are not using them, whether it be classifications or summary health measures or what have you, comparative data, learning from comparative data, I just think obviously this is my bias but I think there is an enormous amount to be gained, and actually even people in the states like John Osborne or Osward, is that his name, Oswald. He has decided that, but there is a lot to be gained from that kind of interaction.
DR. HUNTER: I certainly accept the point. I am not sure about the placement, and I think the things we are talking about in C are not, I mean it is for example, not judging whether you are talking about comparisons across states or comparisons across countries or whether you have standards or not. That seems to come somewhere else. So, we can figure out --
DR. STARFIELD: Why don't you make it a seven, and it becomes consider standards and policies developed at the international level?
DR. HUNTER: Because we have, we later talk about a specific system characteristic about standards.
MS. GREENBERG: It isn't just standards.
DR. HUNTER: I know.
MS. GREENBERG: I said, "Standards and policies."
DR. STARFIELD: And data. The health statistics enterprise in the US should use international data.
DR. HUNTER: I think the question is where exactly is that. I accept your point completely. I am just not sure if it is parallel to these other things. We are talking like you know these are things like we rely on a culture of scientific objectivity. That certainly transcends domestic, international things. So, I think it is just a question of where it goes not, not whether it goes.
MS. GREENBERG: It might go in Chapter 3. Our vision includes being engaged internationally.
DR. FRIEDMAN: It is going to be one place or another.
MS. GREENBERG: Chapter 2D, second bullet, research relationships --
DR. FRIEDMAN: Second bullet under --
MS. GREENBERG: D.
DR. FRIEDMAN: Okay, D1.
MS. GREENBERG: Researching relationships among risk factors. I would say, "Health conditions" rather than disease interventions and outcomes.
D3, although you did mention in D2 developing information to guide health policy, development, assessment and evaluation, I think under 3 you, also, need information needed to evaluate interventions. You are talking about interventions.
Chapter 3B, model description, there is a need to define terms. I know you are going to have a glossary, but are you equating ecological with distribution? I was very unclear.
DR. FRIEDMAN: Where are you, Marjorie?
MS. GREENBERG: We are now into the model description, B, overview and dynamics of the model, the influences on the population's health. You have under population's health, and let us go to the model itself, you have level which is aggregate, and then you have distribution which you say is ecological, and then various other places you, also -- so, it seems, and also even in this description here you seem to be equating ecological with distribution, but I don't think you really mean to be doing that and here you have various things identified as either ecological or aggregate, and I guess I am not quite sure how you are defining ecological, and as I said, whether you are equating it with distribution like it appears in population health or what the definition is, how you are defining it, and as I see it like under resources it is clear to me. Community, the stuff under community, left column is stuff that isn't really characteristic of an individual but sort of is more organic about the community whereas stuff at the right is things that people have, you know, personal health practices, and their own social support, right?
DR. FRIEDMAN: Right.
MS. GREENBERG: Okay, now why would health care be only ecological? I mean individuals have access to health care, the quality of their health care, the cost of their health care. I don't get it. Do you see what I am saying?
DR. STARFIELD: Yes, I think that right. Health care certainly is ecological. It is the nature of the system.
MS. GREENBERG: Yes, but it, also, has individual, and so, I am raising two issues. One is that I think it is confusing to be indicating in some places that you are equating ecological with distribution because you are not.
DR. STARFIELD: Where does it imply that?
MS. GREENBERG: Population's health.
DR. STARFIELD: On the diagram?
MS. GREENBERG: On the diagram, level, and then it says, "Aggregate," and then it says, "Distribution, ecological."
DR. STARFIELD: That should be taken out, don't you think?
MS. GREENBERG: And in fact in the description you say, "Population health as an outcome is both," and I am on Page 7 now, Is both an aggregate variable and an ecological variable. It includes both the average health of individuals in the population level and the distribution of health across the population which implies that that is the ecological, and I think that is really confusing. I don't think it is what you mean to be saying.
DR. STARFIELD: Why do you need aggregate and ecological on the model on Figure 1?
MS. GREENBERG: I think you need to define what you mean by ecological.
DR. STARFIELD: Level is really average, right?
DR. FRIEDMAN: Yes.
DR. STARFIELD: Okay, so, we could probably --
MS. GREENBERG: Average --
DR. STARFIELD: Average and distribution.
MS. GREENBERG: And take ecological out of there, right?
DR. STARFIELD: Yes, and then that paragraph can be simplified.
MS. GREENBERG: Then I think you need to make health care be at the aggregate as well as the ecological or the average or whatever.
DR. STARFIELD: And that first paragraph then can be population health as an outcome includes both the average health --
MS. GREENBERG: And the distribution variation.
DR. FRIEDMAN: Do we need to distinguish between them on the model itself?
DR. STARFIELD: I would distinguish average and distribution.
DR. HUNTER: Ecological and aggregate.
DR. STARFIELD: Take out those words.
DR. FRIEDMAN: Personally, I think that it helps to point to the distinction between aggregate variables and analyses and that ecological because in fact I think what is happening we are running up against our 15-minute time limit here, but I think in fact what is happening is that we have really spent much more time on aggregate, and we have spent very little time on ecological, and I think in fact we intend to collect data that we then aggregate rather than really using and collecting ecological.
DR. STARFIELD: But I don't think that is true. I mean distribution is the aggregate data.
MS. GREENBERG: Yes, distribution isn't necessarily ecological. I mean it can create a context. So, it is both, I suppose.
DR. FRIEDMAN: That is where I am not sure. I understand your --
DR. HUNTER: We can take it out.
DR. STARFIELD: Yes, I think that is what we are talking about is taking it out on the population side.
DR. HUNTER: And leaving it in the other places.
DR. STARFIELD: Leaving it everywhere else.
DR. FRIEDMAN: Okay, that is good.
MS. GREENBERG: Okay, and why aren't genetic and biological characteristics, why are they only ecological, no, not ecologic, but we have under there, to me it was confusing. By community, gender, structure, community, age structure, it sounded like that was all you really left behind it, but you are also talking about individual genetic and biological characteristics, right?
DR. FRIEDMAN: Yes, and that is confusing to me, too. We, also need to expand the comment.
MS. GREENBERG: Okay, that gets me to Chapter 4.
DR. FRIEDMAN: As best I can recall what we have done since the June meeting, for example, in Chapter 4D was try to continue to add in points that were raised during the hearings or discussion groups as well as just add references to those. So, basically D as a cataloging includes a cataloging of points that were made, the points that we have heard and then in 5, we have really restructured 5 so that we essentially posit four core values and then focus on the system characteristics and the recommendations would be based upon 4C which are the system characteristics rather than on the quote, core values.
MS. GREENBERG: Rather than what?
DR. FRIEDMAN: For example, we are not asking on recommendations generally speaking about maximizing scientific integrity. We are focusing on the system characteristics that are now in place. So, that is basically the flow in Chapter 5 and Chapter 6.
DR. HUNTER: The reason we ended up restructuring a little is because we had these values stated, and we had sort of some intermediate things and then we had in some cases the specific areas. We had reference characteristics, didn't have anything from the values, and you could implement all of the characteristics without achieving some of the core values or addressing some of the core values. So, this sort of cleaned up that anything we had a recommendation on would tie back to those but also sort of cover the universe of things we wanted to make sure we recommended. So, this was actually pretty completely restructured, but I think the same principles, values and characteristics are more or less the ones that were in there before. They are just resorted and either split out or aggregated, and then we have these pesky questions.
DR. FRIEDMAN: They don't actually belong.
DR. HUNTER: They were more placeholder sort of things where we might do a recommendation.
MS. GREENBERG: All right. You have the core values, and you have the system characteristics. Now, where does B fit in because some of those things in B are, also, in system characteristics.
DR. FRIEDMAN: Now, we are on 5, right?
MS. GREENBERG: I thought we were just talking about Chapter 5.
DR. FRIEDMAN: I just want to be sure.
DR. HUNTER: Do we have anything on Chapter 4? We didn't do a lot to Chapter 4. This is basically the diagram on cycle of development where we just really put in an almost reference for when we get to the writing point, the stuff that we had hearings on describing gaps, but it is not really much different.
MS. GREENBERG: This is the cycle.
DR. HUNTER: Yes. So, it has got a lot of information in these pages, but it is not new stuff and it is not sort of distilled into what we would actually say from it, but it is a lot of good background stuff that people said.
MS. GREENBERG: I am not that graphically adept. I got a little confused by all those little arrows in the middle. I see the outside arrows, it is like define the data needs, and that all goes all right.
DR. HUNTER: We are going to redo the graphic. It is supposed to try to get across the notion that it is this core integrating function that sort of forces movement, that it helps advance things along the cycle and helps interact with at each point and it kind of goes back and forth. I am not sure that it really helps.
MS. GREENBERG: It was sort of distracting to me, but would that core integrating function be health information planning board?
DR. HUNTER: It could be any number of things.
MS. GREENBERG: And then this was just sort of descriptive.
DR. HUNTER: We heard that from Bill Cosby at the Seattle hearing.
MS. GREENBERG: All right. I wasn't involved. So, I really didn't know where this had come from. Wherever it came from I think it should go back.
DR. FRIEDMAN: I think we are asking for people to tell us what they think.
DR. HUNTER: Okay, maybe we should just go to 5.
DR. FRIEDMAN: Okay, 5B. So, your question, Marjorie is how does 5B fit in, and basically let me tell you the point of 5B and the point of 5B was to get somewhere in there we need to have a focus and a touchstone of a theoretical structure for population health, and at the same time it is not a specific system characteristic. It is not a system recommendation but we don't want to just sort of leave it out there early in the report. We wanted to say essentially like the core values, one of the things that is essential to health statistics is having, it may not be Figure 1 but something that we can all use as --
MS. GREENBERG: I dare someone to come up with something better at this point than Figure 1.
DR. HUNTER: Maybe you could draw a map. Figure 1 which is described in Chapter 3 lays out the conceptual framework. Five B on Page 16 basically says that we want people to pay attention to Figure 1.
MS. GREENBERG: Okay.
DR. HUNTER: Five C in the bullet starting with enterprise-wide, and we have to define that enterprise there or change the word.
MS. GREENBERG: Five what?
DR. HUNTER: The fourth bullet under 5C, enterprise-wide plan of coordination to assure dot, dot, dot, basically then ties back to those things saying that the point of this overall planning enterprise is that we make sure the system is responsive to the conceptual framework. So, you tie it from the framework to the goals in 5B to the operational implementation in the fourth bullet, the 5C.
MS. GREENBERG: Okay, the only thing I would suggest is maybe you just want to remove the fourth bullet from 5B because it is repeated as the third bullet under 5C. Good, we eliminated something.
DR. HUNTER: They all want to go to 5C anyhow.
DR. STARFIELD: But were you suggesting removing something from 5C?
DR. FRIEDMAN: Five B.
DR. HUNTER: I would like to continue the diagram for 1 second, if I can. Then Chapter 6, all Chapter 6 does is take 5C and does, you know, with all the information we get from whatever letter we send, puts all of the specifics into 5C that actually says, "Okay, you have got the models. You have got the goals. You have got the principles. Now, here is what we actually do."
So, 5C is basically a complete placeholder for what we get out of this, and we had a lot of it in these things that people, I mean including some previous sections here where we have got citations from the hearing. So, 5C basically flows directly from the recommendations generated under 5C.
MS. GREENBERG: And we don't have to talk about Chapter 6 because we talked about it this morning.
DR. FRIEDMAN: That I think was my own cut and paste job and I don't even know why I put in the questions other than I probably --
MS. GREENBERG: To torment us.
DR. FRIEDMAN: I probably just copied from, I think that is what it was. So, don't pay any attention to that
DR. STARFIELD: We are not going to change these questions just because you changed the questionnaire, right?
DR. FRIEDMAN: It is a non-questionnaire. Ignore the questions because I think what I did was just paste in the system characteristics from the letter. The questions don't belong there. What is going to be there under 6 under each of those 10 system characteristics is our recommendations, specific recommendations.
MS. GREENBERG: And that is where the recommendations are going to be at the level of those 10 things.
DR. FRIEDMAN: Yes. This thing is being changed. I mean we may for example add something on work force and combine a couple, I mean who knows, but that is where they are going to be.
MS. GREENBERG: And of course the models are also a form of recommendation, I mean in a sense.
MS. GREENBERG: Yes, implicitly those are recommendations.
DR. HUNTER: And when we go out with the draft of the final report that would be the first time we would be showing the model publicly asking for comment on the model, and so far they have not been out for comment.
It seems like the issue on Chapter 5 and 6, and it is related to the questions is are these the 10 system characteristics we feel are the right ones, and that kind of keys both 5 and 6 or does the flow in A, B and C work. Otherwise this is basically to be filled in.
MS. GREENBERG: Again, I think I would say, well, all right. For some reason designated driver, I just wonder if you want to say participants or partners. The designated driver is likely to be some agency or organization or something, right? So, the participants are the people in that organization and then other organizations. I sort of like the idea really of partners because although there might be a designated driver really doing it, driving in partnership although one wouldn't really want to drive a car that way and those who have spouses like I am who attempt to drive while the other person is driving know that this is ill advised, but anyway I sort of like the concept of partners rather than participants.
DR. FRIEDMAN: It is a friendlier term.
MS. GREENBERG: I think you are, also, trying to get at organizational level, too, not individuals. That was all I had.
DR. FRIEDMAN: We should change designated driver. The term should probably be changed.
MS. GREENBERG: I like designated driver.
DR. HUNTER: I don't think we are going to use these exact terms so much that we have to --
MS. GREENBERG: I know I keep coming back to this. I am not saying this to you. Generally I am saying this to the world but we know that Dorothy Rice didn't get a chance to review this or approve it. You know who she thinks should be the lead coordinating organization, and it is the NCHS. She never would have agreed to this CALSPE(?) thing which in a way by only putting hers in here certainly makes her a party to this and I just know she doesn't support it. Enough said.
Stan, I thought we sent you back to DC.
PARTICIPANT: No, I am still here. I fly tonight at six-thirty.
DR. FRIEDMAN: Are there suggestions, I mean enterprise was not necessarily a word of choice. Actually what happened was that was put in. I think Ed initially used it and then last time we discussed it, and then I sort of propagated it, and then last time we discussed it I remember Ed saying, "Enterprise, what are we talking about here; who put that in?"
DR. STARFIELD: I am trying to look at the question. I don't know what it means.
DR. FRIEDMAN: Why don't we describe I think what we were trying to get across? On the one hand we don't want to use the word "system," because system implies greater rationality and coordination than I think any of us believe exists. So, we did not want to use system.
At the same time I think what we wanted to imply with enterprise was all those involved in generating and using health statistics, be they public or private, be they federal, state or local.
DR. STARFIELD: This doesn't say this because by putting in local, state and federal you get people to focus on local, state and federal, not public and private I think.
DR. FRIEDMAN: Where are you?
DR. STARFIELD: In six, four.
DR. FRIEDMAN: In any case suggestions about what we can use as a descriptor instead of health statistics enterprise described.
MS. GREENBERG: The only other word that comes to my mind is like endeavor but that is too weak. Then you cannot say endeavor-wide.
DR. HUNTER: For those that have not been through all these, this was partly the subject of one of the discussions that we had in the Humphrey Building where the question was is health statistics a field or is it a system or can you have things that are going on about health statistics that are not part of system because they are either proprietary or something and I think we have never really quite come up with good terminology because we want to talk about something more than just health statistics agencies or people that are traditionally the collectors of health statistics, but we also don't want to make it so amorphous that it is anybody that might potentially use the statistic in their everyday life. So, it is some way we planned a way of using one work and being more descriptive, you know, use five words instead of one or something.
DR. STARFIELD: May I make a suggestion? Four B really should be 4A because that sets the stage for what you think is the enterprise.
MS. GREENBERG: We are on the questions right now?
DR. STARFIELD: Yes, section 6.
DR. FRIEDMAN: Chapter 6, 4B. Barbara has a different Chapter 6 than I do.
DR. STARFIELD: I just numbered them.
DR. FRIEDMAN: Oh, okay.
MS. GREENBERG: It is the enterprise-wide planning is where you are.
DR. HUNTER: And the question is what aspect of the health system identified is in both public and private sector.
DR. STARFIELD: That is the first question, isn't it, really? What do you think is the enterprise and then the question is how do you coordinate the entities within the enterprise.
I think if you get them to say who is in it, you don't have to worry so much about the word.
DR. FRIEDMAN: Maybe the key, this is essentially expanding upon what you are saying, maybe the key is we continue to use enterprise but we just define it explicitly earlier on in terms of we are talking about all the producers and users of health statistics publicly and privately.
DR. HUNTER: We should try in Chapter 2, we have this stuff in 2C called delimiting the health statistics enterprise where we will have prior to this we will have written that section out which attempts to describe what we think is the health statistics enterprise. So, in extending the definition from a prior chapter we will try to put some boundaries on that and that sort of does suggest who those people are who will be at the table for the planning which hopefully we will get some input from that from the question, but in my view the health statistic enterprise is made up of everybody who needs these. I mean they are people who meet these five characteristics that we have described, systematic and organized, public minded, you know, multiple disciplines and create information about aggregation and that sort of indirectly excludes people who are not public minded but might be using the same statistical techniques. It is organizations who are primarily working on information about patients for the purpose of patient care or other things.
DR. FRIEDMAN: I think we should just do it so that the health care system or enterprise, I don't know, includes users, public and private and then go on to --
DR. HUNTER: Right, but I think that gets us partly to that issue.
DR. FRIEDMAN: Good, okay.
DR. HUNTER: I mean if we had already written all this out some of this would be easier but that is the idea of that section.
MS. GREENBERG: I see now that I did have one little question mark I didn't mention here under Chapter two five since you were just talking about that area. I had a problem with that second bullet. Regardless of whether linkage occurs at individual or aggregate level health statistics never utilizes, well, again, you have got is it plural or is it singular. We have to work that out. It has got to be one or the other. Health statistics never utilizes information at individual level. I am on Page 6.
DR. STARFIELD: That is obviously wrong. It reflects maybe. Maybe the word "reflects" is better.
MS. GREENBERG: It uses information.
DR. STARFIELD: But in fact what the statistics do is they don't reflect the individual.
MS. GREENBERG: But it doesn't focus on information at the individual level. I mean it certainly uses information at the individual level. I mean people use micro-dupe(?) tapes.
DR. HUNTER: I understand the point. The point is it is not the purpose is knowing about the individual. It is for the purpose of knowing the individual in order to say something about population. That is badly worded.
DR. STARFIELD: I actually think that reflects is probably a good word because it is what you are --
DR. FRIEDMAN: I think the point we want to make is we are now talking about, you know, we don't produce information about an individual. I mean I think that is the only point.
DR. STARFIELD: So, it never reflects the individual.
MS. GREENBERG: Reflects is good because it is what it feeds back. It is not just that it doesn't reflect. You see its purpose is not for the individual like health care data might be a purpose to take care of the individual or intervene for the individual, and this isn't the focused health statistics.
DR. FRIEDMAN: Right. I mean this is not the way. Never reflects information about an individual but about populations and subpopulations.
DR. HUNTER: How about it lacks reflexiveness?
MS. GREENBERG: Where is that word?
DR. FRIEDMAN: Marjorie, you never went through the Marxian period.
MS. GREENBERG: I did.
DR. FRIEDMAN: You did?
MS. GREENBERG: Oh my God, I got my master's in Russian studies.
DR. FRIEDMAN: I was a Marx scholar. Is there anything else that people would like to comment on on the outline? If not we can turn it over to Vickie. Let me emphasize this is clearly the iterative process. We are going to be working on this and continuing to expand upon it for months, and we hope to be closer and closer to filling in little lacunae and turning it less into an outline and more into the report. So, comments will continue to be welcome, but the more we can get the more helpful it will be.
MS. GREENBERG: I should have started the meeting actually with a disclaimer that I am sorry I haven't been able to be working with you more directly the last few months. I really appreciate the work you are doing. I really care a lot about this and will try to put as much energy as I can when I can.
DR. HUNTER: Could I just try to focus people, not for an hour, not to pick at the scabs since we are moving off of this, but I think the key to 5 and 6 and to the letter and to the questions is do we have the right level of things in 5C, and so when you go back and look at the specific comments that you might send us on the questions I think the real underlying big picture thing is do we have the right 10 things. We struggled back and forth with going from the principles you had in the interim report and the goals that are in 5A and the sort of interim values in 5C and I don't think we have any truth here. We may well change them based on input, and we can balance how strong our recommendations are by re-aggregating some of these things so we have some balance in the report, but if these are the things that we really want to address with recommendations then we are going off in a very wrong direction. So, I would just suggest people think about that along with the questions themselves and we still have time to tinker with these, but if these aren't the right areas there is no point in asking questions about them. So, it is not just whether the questions are the right ones. It is whether we really feel like these are the things we did hear from the hearings and feel that we do care enough about to recommend.
MS. GREENBERG: Are these the same 10 that were in the interim report?
DR. FRIEDMAN: They have been reworked.
DR. HUNTER: We cut them down to three. We expanded them to 15. We went back --
DR. FRIEDMAN: We spent a lot of time cutting them down to three, but when they expanded back out in accordion-like fashion they are not the same 10. The air was sucked in different holes of the accordion.
We had some points especially in this work force, for example, issue that, you know maybe that needs to be included somehow with 5C and something else that it doesn't exactly worry me, but one thing that we particularly in light of discussion about the Board of Scientific Counselors and one possibility, and I tried to remove myself from this report which is very difficult is that it may be that people would look at this and say, "Oh, this is really focusing on health statistics as sort of health statistics operations and not about health statistics as research uses for health statistics," and for example we don't have anything in 5 or 6 or 5C specifically about developing a research agenda or developing a research agenda around 5B, around Figure 1. That is not a system characteristic. I mean there is a couple of things that I see as, I mean in fact I am sort of looking trying to think in terms of potential reactions, in terms of what, you know, Ed Sondik has said, and I am just thinking in terms of the first thing he will say is work force and what is the research agenda, and they are implicit but not explicit, and I think perhaps we might want to find some way of making work force issues explicit in C and research agenda explicit in B.
DR. STARFIELD: I have to ask a question as I work on these questions. What is the distinction between a data producer and a data supplier? A supplier is a disseminator?
MS. GREENBERG: The supplier is the person you get the information from I guess.
DR. STARFIELD: To me the words mean the same; to produce and to supply is the same to me.
DR. FRIEDMAN: I don't see much distinction. It clearly needs to be defined. I had thought personally of the supplier being the people who give you the data, like the hospital or if it is the --
MS. GREENBERG: The individual. I really think of a respondent as a data supplier.
DR. FRIEDMAN: I had thought of the producer more, and I am not saying that this is correct. I am just saying that in my own personal lexicon I had thought the producer of more being what, you know, the person who takes the data, cleans it, goes through those kinds of, the aggregator, goes through the mechanical steps.
MS. GREENBERG: That is the way I thought you meant.
DR. FRIEDMAN: I am just saying in my own personal lexicon that is how I had been using it.
DR. STARFIELD: If we are going to work on this question I need to understand the distinction. What are the processes we are dealing with; what are the two processes?
DR. FRIEDMAN: I think one process is who gives the data. So, for example, one of the things we have heard very clearly is we need to do a much better job of providing information back to those original sources and making it more useful to those original sources.
DR. STARFIELD: Okay, so one is original source and the other is the collators?
DR. FRIEDMAN: Essentially, yes, as a mechanical process, not the analytic process, but the mechanical process takes a lot of time and is an important part of the process.
MS. GREENBERG: Where does the analytical go in then?
DR. STARFIELD: All right, I will go with the concept of the original source and the collators.
DR. MAYS: If you come up with language, then I think that should go back to the --
MS. GREENBERG: That is what I am working on. I would agree that I think that something about work force probably should be, is certainly part of the health statistics enterprise and probably the research agenda as well. What about the whole issue of marketing this enterprise or making it real to people which is sort of at the core of why NIH gets its budget doubled in a 5-year period and we get a 5 percent increase? Is that actually --
DR. HUNTER: I wouldn't agree that that is the core of why.
MS. GREENBERG: People think they are important to their real life. Congress thinks they are important to real life and they don't obviously think health statistics are.
DR. MAYS: Identify ways a hospital can get by or a college can; they teach the physicians that it doesn't matter. It is like medicine not the study of medical --
MS. GREENBERG: You don't think that is the core of it? I think that is really simplistic on my part but --
DR. HUNTER: I think people have real diseases for which they want real cures, and they are very focused on their own personal issues, and they are not concerned about community and society and research in general. They are not concerned about NIH as a research enterprise. They want a cure for the cancer that I have or that my parents have, and that is what NIH holds out and where marketing comes in, how do you market the best case you can make for what they have. You are not going to go out there and market and say that we are going to be able to cure the next generation. So, don't worry about the child or wife. That wouldn't sell very well, but I mean I think it is that we are at several levels of abstraction from that very real promise that this exact pill that they are working on right now is going to change your personal life.
MS. GREENBERG: So much of their money doesn't go to that at all.
DR. HUNTER: That is where the marketing is. I think the underlying promise is that they are --
MS. GREENBERG: I don't know whether this whole issue of --
DR. HUNTER: You can have bacon for breakfast and still not have heart disease because they are going to give you a pill, but I think there certainly has to be a marketing element.
MS. GREENBERG: And it kind of ties to my saying that the public is a stakeholder.
DR. HUNTER: I don't know where to put that, but that is a very important thing. It is that we have a marketing strategy within each of the 10 characteristics but we don't have something that focuses on the overall marketing of the enterprise and that is the eleventh thing and I don't have questions. We are more important than NIH.
Actually on the Figure 2 model it partly gets at it and it could be included to be a more accurate question of do we just inquire if we are interested in different players because we start on the right hand side, and you talked about sources. We move it to the collecting, aggregating and compiling which is in Dan's lexicon the producer and then you move it to the analysis, the translation and the design. So, we might want to think about how we could use terms.
DR. FRIEDMAN: Absolutely, and I think the important point we are trying to make about data sources is that a data source may be an individual but it may also be something in the HII that has already caused that data to be compiled and aggregated. So, your source may not be, you may not have to become a producer to be an analyst. You can skip.
MS. GREENBERG: No. 4, should this planning to ensure the health statistics enterprise, I am on the same theme, but is relevant to policy, program decision making, how about personal decision making?
DR. HUNTER: We have about 1000 bullets. We are trying to --
MS. GREENBERG: I am sorry, 5C, enterprise planning and coordination to ensure that the health statistics, because enterprise is relevant to policy making. How about personal decision making? I am thinking of the public here, but it is not that everything is but a lot in health statistics should help inform us in making our decisions.
DR. FRIEDMAN: We had a lot of discussions around just that point with discussions focusing on what we are doing is producing data that can be used presumably in designing programs and the programs should contain the data that are used in personal decisions, but it is not as if when NCHS puts out NHANES reports that that report is intended to be used in personal decision making.
MS. GREENBERG: If I saw something out of the NCHS saying that it was a higher complication rate on people who had C sections than people who didn't I might rethink about do I want to have a C section. There is a lot of data like that that you could make about your own personal decisions and choices without any program intervention.
DR. HUNTER: I think that is true. I mean the growth charts are an example. You know where your kid stands but I think and we heard some in our discussion groups about consumer information about choosing health plans, choosing physicians, choosing hospitals, the surgical outcome data and so forth. So, I think the discussion has gone more along the lines of they, too, really take on all of those things as a primary focus probably more than was intended in this report, and it is probably not the primary focus of what we describe as the health statistics enterprise but that doesn't say that there aren't complications, but most of the things that people that are described in this report do are translated into the public by intermediaries or you know your cholesterol level that comes out, you know that the nationwide cholesterol level is interpreted by you as an individual who might have some guideline in this issue about what your cholesterol should be, not in the absolute sense of the statistical system and trying to figure your cholesterol.
So, we sort of went more back towards the sort of community level kind of thing.
MS. GREENBERG: I guess my feeling is when you see that NCHS says that, you know, people are too obese, I guess you would have one of two reactions. Good, I am in good company or maybe I need to do something about that. Health statistics do need to speak to people. I think program policy is just like oh, that is Washington, you know. I don't see because I was looking for relevance and I said, "Oh, here is relevance," and I was looking for characteristics, timely access, and oh, it is relevant but then the only thing that it is relevant to is the conceptual framework for health which is really abstract policy and program decision making. I think it needs to be relevant to something a little bit more.
MS. COLTIN: Am I allowed to jump in here?
DR. FRIEDMAN: Sure.
MS. COLTIN; I actually agree with that. I think that given the use of health information on the web in particular that consumers are going to want to tap into some of the national statistics, particularly with the movement toward shared decision making and improving the information consumers have for informed consent. So, I can see going to a database like NHIS or maybe outcomes databases and saying, "What are the outcomes for a white woman between 50 and 55 who has bypass surgery in general?" so that I would not just want overall risks but risks for someone like me in order to make it a little more personal and understandable and the data could do this for you and why not?
DR. FRIEDMAN: That is a good point.
Other comments or should we close now?
Close, okay?
(The session was concluded.)