[This Transcript is Unedited]
Hubert H. Humphrey Building
Room 705
200 Independence Avenue, SW
Washington, DC
Agenda Item: Call to Order - Dr. Cohn
DR. COHN: This is day two of meetings of the National Committee on Vital and Health Statistics. I am Simon Cohn. I am sitting in for John Lumpkin, who is off at a meeting with HHS for the first part of this session. So, we'll move forward, and we'll be seeing him probably in 45 minutes to an hour, would be the expectation. And obviously, at that point we will hand off the microphone to him.
We will go through introductions as we normally do. I do want to just go through the agenda very quickly, because we are going to be changing the order just slightly.
First up, which will be about 10:10 am, we do have Jim Scanlon talking about the HHS gateway to data and statistics on the Web. And then we have a brief report from Marjorie Greenberg on the Gallup survey on federal advisory committees.
After that, rather than go into the NCVHS organizational issues, we will at that point go into reports from the subcommittees and work groups. And you have two letters in front of you right now, both from the Subcommittee on Standards and Security. There is also going to be another letter from the Subcommittee on Privacy. And then we will sort of finish off by talking about the NCVHS organizational issues.
Now, having said that, obviously I want to welcome my fellow committee members and others on the Internet. And we will, as usual, go through our introductions. For those on the committee, I would once again remind all of you if there are any issues coming before us for which you need to recuse yourself, I would like you to do so during your introduction.
With that, Stan, would you like to lead off with the introductions?
DR. HUFF: I am Stan Huff with the University of Utah and Intermountain Health Care in Salt Lake City. I am a former board member and chair of HL7. And so, if we have any discussion of HL7, I probably need to recuse myself. Also, I'm a co-chair of the LOINC committee, so if we discuss LOINC, I'll need to recuse myself form that discussion. Other than that, I think I'm pretty clean.
DR. MC DONALD: I'm Clem McDonald from Indiana University and the Regenstrief Institute. I'm a regent of the American College of Physicians. I'm chairman of the LOINC committee, and I'm a member of HL7. If those discussions come up, we won't talk.
MS. GREENBERG: You're just a member of HL7, you're not on the board? You wouldn't have to recuse yourself.
DR. MC DONALD: No, I'm not an officer or a chairman of anything.
[Further introductions were made.]
DR. COHN: There have been a couple of people that have come in since we did the update about the agenda. I just want to briefly update everybody that we are going to be going through two brief presentations, one by Jim Scanlon, the other from Marjorie Greenberg. And then what we're going to do is to move into the reports from the subcommittees and work groups, and the letters and actions items. Then we will follow that with the NCVHS organizational issues.
Jim, would you like to lead off?
Agenda Item: HHS Gateway to Data and Statistics on the Web - Mr. Scanlon
MR. SCANLON: Thank you, Simon, and good morning everyone. I'm going to give a brief overview, and a simulated demonstration today of the project that I have described to the committee in the developmental stages. It's a Web-based gateway to all of the Health and Human Services data and statistics that HHS agencies have on the Web.
I'm going to give a little bit of a background, and I'm going to take you through some example pages. Obviously, you can check the Web site yourself. And I would really appreciate your own reactions when you get a chance in terms of improving the Web site, making the data more accessible. This is a first generation product I think, as we all view it, and we are really looking at ways to improve it and make the data available.
Let me give you a little bit of background. As you all know, we have been talking in the committee discussions about the National Health Information Infrastructure, about standards and technology. I'm going to talk this morning about the actual information or data, particularly in statistical form, that HHS agencies in their research missions, in their public health missions, and either evaluation and policy research missions, and in their programmatic missions carry out.
So, this is largely about statistical. This is not transactional data, but it might be the database on which such transactions are based. This is largely quantified statistical information. In some cases there are case studies, and qualitative information as well.
We began in HHS quite a while ago, an effort to improve such information for decision-making, and here we mean decision-making by all of the users of the Health and Human Services system. And one of the goals in fact of our HHS data strategy is to provide timely and reliable information to decision-makers, everyone from consumers to providers, to researchers in public health in a user friendly way, and to do this in a manner that protects privacy and confidentiality.
So, our HHS Data Council was asked to pull together in some way, a user friendly Web site through the vast array and holdings that HHS agencies have. And I think those of you who are familiar with these, they are often the national and the international standard for statistical research, evaluation, and policy research activities. And they are quite diverse and extensive, but they are fairly difficult to get to, unless you know exactly what you are looking for.
So, in terms of the environment that existed before we began the project, I think everyone agreed that there was an impressive array of surveys, data systems in HHS. And each of the agencies had a variety of dissemination mechanisms, from peer reviewed journals, to Web sites, to special reports, to the gray literature, which is basically government reports that are published in a specialized form.
But in general, these tended to be agency-specific. You had to know that AHRQ or the Indian Health Service or NCHS or NIH was the place to go in HHS for this kind of information. It wasn't an integrated perspective in terms of subject matter.
So, we began a project then to pull together, more or less to help in dissemination and access to data, a Web-based gateway where you could come. Ideally, this would be a one stop kind of shopping center where you could come in. If you were a sophisticated user, you could find exactly the data system you were looking for. And if you were just looking in general, there were ways for you to find the data as well.
The basic idea was to build upon the agency Web sites, not to create a whole new parallel process. But this creates the basic introductory gateway, and I'm going to show you what this looks like now. It is located at basically aspe.hhs.gov/statinfo. You can reach it from the NCVHS Web site by coming to the Data Council's Web site. It's now one click off the HHS home page as well.
Let me show you now, and take you through a couple of pages. First of all, from the Data Council Web site, you can see the other links that are available on the HHS Data Council Web site. So, if you are looking for NHII initiatives, if you are looking at the standards that the secretary announced, clinical data, interoperability standards in March, these are on the Data Council's Web site.
If you are looking at our HHS information quality guidelines, they are there as well. You there are policies about race and ethnicity data, a link to the adminsimp Web site, and we also have the gateway to our statistical resources listed there as well.
So, on the gateway, and again I hope you can all read this. You have a paper version before you, but there are a couple of resources and a couple of links on the Web site I would like to take you through, and give you an example of. And obviously, going through this yourself is probably the best way to familiarize yourself with it.
But along the left side, like any Web site, there are some links more or less of a policy nature. There is a link to the NCVHS Web site, the Data Council, the adminsimp Web site, and state data resources, which I'll show you a little bit more in a minute.
The key features of the Web site include the following, and I will take you through each of these. First of all, there is a search engine called Data Finder, which allows you to search either by pre-selected terms, or by more or less a free search, just plugging in some language, whatever information you might be looking for. You might be looking for state health insurance estimates for children, coverage for children, you might be looking for the prevalence of cigarette smoking, something like that. Again, this is statistical information.
And this would basically, by plugging in that information, this would take you to all of the Web site lists, just like another search on Google or somewhere else, where such information exists. I'm going to show you that in more detail.
But the other feature that is on the Web site is short cuts to the major HHS data systems. These are direct links to the roughly two dozen major work horse statistical surveys and data systems in HHS. And the thinking here is that most likely you are going to find some general information that you are looking for at those Web sites. And if you know you want to go there, the MEPS, the National Health Interview Survey, the Vital Statistics System, area resource file, things like that, it would take you directly there.
In addition, we have the full blown meta-directory of HHS data resources. This is a list and a description of virtually all of the major statistical resources, surveillance systems, and so on, that are supported by HHS agencies. When you go there, you will see a couple of paragraphs describing the system.
It gives you some characteristics of the system. It tells you what the race and ethnicity detail is for example. It tells you a little bit about the geo coding of the data, national, regional, state, local. It tells you about how information is made available, what stage it is in, and usually, if the agency has one, there is a link to the actual Web site, where increasingly our agencies are disseminating information. And you will see how extensive those are when I give you an example.
We also have a link to the HHS Policy Information Center, which our office runs. This is probably the most extensive policy research and evaluation library in HHS. It includes policy research and evaluation going back to the seventies, including the New Jersey negative income tax experiment that ran, health insurance experiment, and from that point on, it includes virtually all of the HHS supported policy research and evaluation.
And then there is a link to the scientific literature. If you are really entering the site, and what you want are the refereed journals, published information, or you want to learn about research in progress that is supported by any one of our agencies, NIH, we take you to that Web site, as well as call CRISP(?).
So, just to give you an example, if you click on the state data resources, just to show you, you would get a list of the states. And for each of those states, as you clicked on any one of those states, you would find virtually all of the Web sites that contain data, HHS, or state or local government Web sites relating to that state. And there is an all states feature as well. So, if you really wanted all 50 states data, state by state, we have that as well. And I think we have all of the states.
I think on one of our versions we actually left out Illinois, and John Lumpkin was quite unhappy about that. So, we can report that Illinois is now part of the union.
This is an example if you clicked on the shortcuts to major HHS data systems, you are taken to a list of almost dozen -- it's about 19 at the moment -- of the major, most frequently accessed statistical resources of HHS, behavioral risk factor surveillance systems. Current population survey is actually Census, the MEPS survey, the National Health Interview Survey, and so on. So, if you were really just browsing, you could probably look here and find at least the general information you are looking for.
I told you about the meta-directory of HHS data resources. This is what the first page looks like. Each one of these gets organized by office. And this is a listing with links to virtually all of the HHS data collection systems. And here is just an example, but literally for each agency, this should be virtually all of the major data systems.
If you link here, it would take you to a description about the system. And then normally, you would have a Web site link to the system as well, to the actual data.
The Policy Information Center, as I said, is literally an electronic library of all of the policy research and evaluation in HHS. This is what that Web page looks like. So, you can again search this. You could find all of the research and evaluations according to these topic areas. And in most cases, the document itself is available online electronically, going back quite a way.
If you really came into the Web site looking for the published health and scientific literature, we give you a way out. You can go to the NLM, PubMed, or you can go to CRISP, which is our internal project system that includes virtually all of the grants in progress by NIH, AHRQ, and our other research agencies. You click there, it takes you there. They have their own search capacity.
And finally, the Data Finder itself. Here, as you see, you could actually -- there are a couple of ways to link, and there are a couple of ways to do advanced searches. You could plug in whatever you are looking for, let's say cigarette smoking among youth. You could plug that in to the actual first line there, and it would take you to all of the surveys and data sources that provide such data. Click on any one of them, and it would actually give you the data itself.
You can also search -- and again, these are statistical facts, statistical information -- you could choose any one of the pre-determined categories. You might be looking for risk factors, or something like that. If you clicked on risk factors, it would take you to a list of additional terms.
Let's say you clicked on health risk factors again, it would take you to the Web sites, and it is extensive, as you see. We include both state and national. Again, this is where you are actually looking for data.
Another example, if you were looking for health expenditures, you would click here, and it would take you to the holdings, starting with the MEPS for example, Medicare/Medicaid data, some state data, and so on. If you went to those sites, it would literally provide virtually all of the information that they provided on the Web.
I'm going to give you an example now with some of the advanced searches. Not only can you get -- and this is an example of how our agencies are increasingly providing more and more data on the Web pages themselves. Not that we are stopping publishing, but this is often seen as one of the better ways to disseminate.
You can actually build your own tables. So, you can actually go to one of the surveys, and construct a cross-tabulation of your own. The agency Web site provides for that. That's often what researchers, public health folks are looking for.
In the data archive section, you could actually go to the sites that actually have micro data files online, or where you can reach them, and then you can use one of the standard statistical programs, SSAS(?), or SPSS or whatever, to actually analyze the data. So, you can actually get pretty deep into the actual statistical files in this way.
Then there are actually descriptions with questions and methodology, a complete list of URLs. And then we have some additional statistical policy Web sites, and other federal agency data sites as well.
This is the site map. You can see how everything is laid out. And if you went to an example, the MEPS survey for example, many of you are familiar with this. You can see how extensive the Web holdings are now. Not only can you get reports, as you can see from here, you can actually construct your own tables and analyze the MEPS data. You can get pre-determined tables. And you can actually get published tables as well.
So, the move now is towards much more information as a dissemination tool on the Web. This is a first generation crack at the Web site. We really appreciate any advice back from the committee on any way to improve it. We might want to streamline it, and peel off some of the things that are ancillary at the moment.
But let me stop there, and see if the committee has any questions.
DR. COHN: Jim, thank you. Very good work. Questions?
DR. MAYS: I'll start with a comment, which is congratulations, because it's like long overdue, and it's wonderful to have it. And I know it takes an enormous amount of time to mount one of these, so, I appreciate the time and resources that your office has put into this.
I want to ask a question, and them make a couple of comments. One of the things that often is very useful, which I don't know, in some kind of way seems to be getting lost more and more is that within NCHS there are often presentations by staff. And usually those staff are the experts on these surveys. And unless you've been at the data users meeting, you usually can't get those.
And I can't seem to find them anymore. Is it possible that where the surveys are -- because that really saves people a lot of time, to try and see if on a routine basis, NCHS will put those things up and make them available. So, that's the question, if that's a possibility.
The comment is the section that is scientific literature, what we have is PubMed and CRISP. One of the things, and I don't know this for a fact, but I just know where some of the literature is from the survey, but particularly in the area of mental health, and the mental health services research, sometimes that literature is going to be found in Psych Info. And sometimes I think you will find it in PubMed.
So, I don't know how you feel about it, but I would suggest adding maybe Psych Info and the sociology abstracts, because we get our health services research sometimes in those journals.
MR. SCANLON: Well, let me say something about the scope of the Web site to begin with, because we were initially thinking about well, how much should we include in terms of the coverage of the Web site? Should it be only HHS directly carried out data collection and analysis? Should it be HHS supported? Which would be contracts and other work as well, grants. Or should be state and local as well? Or should it include the whole private sector holdings as well?
And for the initial cut we decided to stick with, for a lot of reasons, and you could think of them easily -- once you leave the federal sphere or the HHS sphere, there is a question of why are you including this or that, and not including that? So, our first cut was that there had to be some direct link to HHS.
So, we have included Web sites like that, Vickie, for example, the archives at the University of Michigan, the social science archives, because we support that. There are HHS dollars there, but we didn't include -- and this is somewhat arbitrary, I agree -- we didn't include sites where there was no federal connection, only because it takes you into a lot of choices. Why did you select this site, and not that site?
We have no quality control over other Web sites. we have one over the federal government's Web sites. But we did extend it to the state and local, because the public health community particularly, wanted to have a place where we could begin to have ready access to whatever the state -- you will see virtually every state health department has a Web site, and we have links there. There are organizations that get money from HHS that have these kinds of pages as well.
But I think that's what we will have to look for in the next generation. There is also a new Web site, science.gov -- you have probably seen that -- which is run by the federal government. Now, again, I don't know whether it provides the links to the abstracts you were talking about. But that's a good thing.
DR. COHN: Other questions, comments?
DR. MC DONALD: Is there a table of contents by federal organizations?
MR. SCANLON: Yes, there is a list of federal agencies. You will see it on Data Finder. All of the organizations that we have listed as well, and the URLs themselves. So, you will what exactly -- and again, I emphasize, this is a first generation. This is not Google, though Google certainly is something to aspire to.
I think what we need to do next is probably develop -- we have some relevancy rankings here. In other words, we tried to have rather than a mechanical search, we have experts who sort of say well, the data source that is most likely to answer that person's question is this or that. So, there is a relevancy ranking, just as there are in other search engines. But I think that still needs to be further developed.
Again, it's still easier to search than the original way. The paper way, you would probably never find some data sources. But this is really first generation.
DR. COHN: Okay, I think last question from Don Steinwachs.
DR. STEINWACHS: Jim, I think this is great. One question is are there things that sit in other departments like the VA, DOD, and so on that have any relevance as you would see it? And do you do any links to those, or any information related to them?
MR. SCANLON: We have links to the Census Bureau for the population data and the economic surveys directly, and often we partially support some of those. There is a link to fedstats, which are the other federal statistics agencies and statistical programs. So, you could link there, and then you could try find -- what we probably should do is make it a little easier to find the health.
DR. STEINWACHS: I was thinking veteran data.
MR. SCANLON: And actually, the VA has a pretty big statistics program, and a pretty big research program. So, we have it on fedstats now, but I think we could probably add some direct links there, because it is health-related, obviously.
DR. COHN: Well, Jim, thank you very much. Very good work, and congratulations.
MR. SCANLON: Thank you.
DR. COHN: Marjorie, I think you are up next.
Agenda Item: Gallup Survey on Federal Advisory Committees - Ms. Greenberg
MS. GREENBERG: What I'm going to talk about is in your agenda books, Tab 6. I'm just going to tell you a bit about the Federal Advisory Committee Stakeholder Engagement Survey. This is an activity that took place -- it's very current -- really in about the last six months. And a number of you I think probably responded to the survey. I'm not sure, given the timing, some of the respondents are probably off the committee, and some are still on the committee.
But as a little bit of background, the Office of Governmentwide Policy of the General Services Administration, which GSA sort of tracks all the advisory committees, and we report to them annually, they identified the demand for a governmentwide assessment tool for federal advisory committee performance measures.
And so they contracted with the Gallup organization to conduct this stakeholder engagement survey. And the purpose of the survey study was to provide OGP with a standardized method for collecting performance measurement data related to stakeholder engagement, and I will define that in a minute; to assist agencies in determining the effectiveness of their advisory committees and key factors leading to successful committee outcomes; to allow for comparisons within agencies, and also across the federal government; and then to identify best practices.
Stakeholders were really defined as committee members, designated federal officials, and generally the executive secretary, the DFO, which I serve as for this committee, and decision-makers. It was a little fuzzier exactly who was meant by decision-makers. The person to whom recommendations go. I don't believe a decision-maker actually was surveyed about this particular committee, but the members and I were surveyed.
There are 470 advisory committees in the government that could qualify for this, and 365 participated. So, that was quite good. Almost 5,000 respondents, of whom almost a quarter were from HHS. Of course, being a very large agency, we have quite few advisory committees.
The government-wide response rate was almost 50 percent, which isn't a good response rate for an NCHS survey. But actually for kind of mail survey, which this was, I think that's pretty good, actually. And we had a total of 14 respondents, 13 members and one DFO, which was also quite good.
So, Gallup conducted these surveys. And then they had several training sessions actually. I went to one, and Debbie Jackson went to an additional one last week, to help us interpret the results, which of course they wanted us to then bring back to the committees, which I was eager to do.
And what I'm going to tell you is what Gallup's kind of interpretation guidelines were for this type of survey. Of course, they are very experienced in conducting these opinion surveys at least, and satisfaction surveys, so I somewhat defer to them, although I didn't totally agree with their interpretation the results, particularly if I didn't like the results as well, but we'll walk through that. Actually, the results were very good.
But they feel that on a five point scale for a satisfaction survey, which this essentially they consider a satisfaction survey, from 1, strongly disagree, to 5, strongly agree, you should aim for at least 50 percent of the respondents answering 5. This is not consistent with the professors you had who said only God gets an A.
They feel that at least 50 percent should say 5, because anyone who responds 4, indicates that they have reservations, otherwise they would have given you a 5. And if you respond 3, you are really disengaged, and of course 2 or 1, you are probably hostile or something. So, this is their interpretation.
I would think that a 4 is pretty good. They really say you are going for 5 in an opinion survey or a satisfaction survey, because that is kind of without reservation. And they have found that there is a strong link between people's opinions and their behavior. As I said, they have a lot of experience with this.
That said, they felt that the overall results, government-wide, were that they had captured these advisory committees in the act of excellence. That was a quote from the presentation of the training that I went to. In other words, it really looked very good.
The overall mean you will see was almost a 4 government-wide, and NCVHS was higher both than government-wide, and our agency, HHS. We were at 4.22.
On the other hand, I haven't completely figured this out, except that I think --
MR. BLAIR: Marjorie, 4.22 was HHS or NCVHS?
MS. GREENBERG: Excuse me, NCVHS is 4.22, the agency is 4.09, and government-wide is 3.98.
On the other hand, the percent of the NCVHS that marked 5 for overall satisfaction with the work of the committee -- that was just one question, what is your overall satisfaction -- was only 21 percent, whereas government-wide it was 38 percent, and for the agency it was 42 percent.
So, I'm not quite sure, and I don't think we should lose sleep over this or anything, but how to interpret this, except that I think that maybe among people who deal with statistics, as this group does, and information, that 4 looks pretty good to you too, as well as it does to me. And that maybe we are of the belief that there is always room for improve.
That was like an overall question. If you looked at the mean, and as you will see the individual questions, you will see that the committee really came out very positively.
The findings for the National Committee specifically was that the major strength -- and I meant to bring my book up with me, but if you look in Tab 6, you have my slides. And then you also have the document that I received. The very last page is kind of confusing. It's this box into four squares called leverage graph or whatever.
And what they have identified is those aspects of the kind of performance that they feel are most highly correlated with kind of success. Those are in the upper right, and those are major strengths. But everything above the box with four squares, and everything above the horizontal line are sort of things that really influence success. The other things below the line are important, but they are not as highly associated I guess, with success. This is described as the importance or the leverage analysis graph.
So, using that as kind of my model, what are the characteristics that are most highly linked with success, the ones that were really major strengths for NCVHS that really came out high were that the committee is a positive influence within its area of expertise; that it helps build trust in government; that its recommendations respond to the agency's needs; that its mission and goals are clearly defined; that the committee's operating procedures and guidelines are fair; and that committee meetings are well run.
Thank you, I think John arrived just in time to hear that committee meetings are well run, and I can report that it was well run under Dr. Cohn as well.
Now, other strengths, which again, do not capture things in that upper right quadrant, but actually from I believe the upper left quadrant, are that the committee fairly considers majority and minority opinions. I can say all of these were well over 50 percent of the respondents marking a 5. So, Gallup would say that's good.
That the staff is well prepared for meetings. That was over 70 percent of 5s. That the committee has access to senior managers and technical experts when needed, and that the results of the committee work are available to others as needed, which was in the 90 percent put a 5, I think. So, I think that is a demonstration of our Web site, which is really in my many years with the committee, had really been able to expand our dissemination obviously, in a significant way, although, of course there is always room for improvement.
Speaking of which, the issues of primary priority for improvement, and there I selected again, elements that were above the line, so highly associated with success, but that we were not in the right quadrant. We were in the left quadrant. And these are that the committee's recommendations -- or maybe not even in that quadrant -- are used effectively.
If you look at the detail, this was Question 17, are committee's recommendations or other contributed are used effectively, only 7 percent marked a 5; 43 percent marked a 4; and you had 36 percent marking a 3, and 14 percent marking a 2. Nobody strongly disagreed.
So, this was consistent for other parts of the government as well. Nobody got up to a 4 on that as a mean score, but that I think was the lowest percentage for which a 5 was marked.
Thanks to the committee, the agency is more effective. That wasn't nearly as low, but under 50 percent marked a 5. And the committee's recommendations have a positive impact on the public, and that was also somewhat lower in its being marked.
If you look on the other hand, the committee did feel that the recommendations responded to the agency's needs, so I think the issue of the public, and this is one we have struggled with a big as to given the technical things we deal with, just how much we can communicate to the public.
Other findings which I call possible problem areas. According to their schema, they aren't as highly correlated with success of a committee, or satisfaction, but they are ones that were marked much lower. And you can see that. The means were all lower and under 50 percent definitely. Mark gave it a 5.
Our committee receives sufficient feedback from the agency on recommendations. This one -- let me see if I can just quickly find that one, because that's obviously very important to the committee, and a lot of people marked that one not as high as you would like to see. Only 21 percent felt that the committee received sufficient feedback from the agency, with a 5. So, the mean was 3.5. In any event, only about 57 percent gave it either a 4 or a 5, so I would say there is definitely room for improvement, and how we can achieve that is something to talk about.
Whether the committee is made up of the right mix of individuals. A majority of people did not give that a 5. The committee members are well prepared for meetings. Although as I said, whether staff were well prepared was given a very high rating. Whether the committee members were well prepared was not as highly rated by the respondents, almost all of whom, as I said, other than myself, were committee members. So, this is not like an external assessment. This was the committee members' own assessment either of themselves, or of their colleagues.
And the committee has access to adequate resources, under 50 percent gave that a 5 as well.
So, I think these are areas, some of which are easier to work on than others, and we continuously try to work on resources. We will take seriously that if you get you documents earlier, you will be better prepared. We'll work on that.
The right mix again, is somewhat in our hands, and somewhat out of our hands, but if members feel that we do need people with other types of expertise, that is important to convey that to Jim and to me, because we are not the final decision-makers, we can certainly convey that to those who do make the decisions.
And I think Jim and I both work on trying to get more feedback to the committee, and we will take that to heart as well.
But the bottom line is that the NCVHS scored higher than the agency or the government-wide for statements measuring each category of the survey items. They categorized these items according to people, process, and outcome, and the committee was higher in all of those than the average for the agency or the government.
And just to end, some things that they pointed out as best practices, in the people area, that the people are carefully selected, expertise, interest, talent, committed, informed, valued opinions, I think that came through in the fact that the majority of respondents did feel that everyone's opinions are valued on the committee, respected, and trusted. All of those, of course, are things that we strive for.
As for process, clear mission and goals, the committee came out high on that, established expectations, effective communication, a meeting agenda in advance. I'm appalled to think that an advisory committee would hold a meeting and they wouldn't even have an agenda in advance, but we all know we go to meetings like that, so we're good on that.
Effective committee chair, helps with success, and we came out high on people feeling the meetings were well run. Equal participation, we scored high on that too, and access to staff, management, and consultants.
And finally, as for outcome, and I think this really does speak to strengths of the National Committee, increased collaboration between the public and private sectors, between agencies, and we may do less of that. And someone mentioned about the VA, and this is something that certainly with the consolidated health informatics initiative and the PMRI activity, I think has engaged this committee with the VA and DOD at a minimum.
Obviously, we are looking for increased agency effectiveness. That's why you are here. And an informed public, and there is an area I think, whether it be in the privacy area, I know we have made recommendations, but quality, a number of areas we have probably been less successful in really figuring out how to inform the public. But that's kind of an editorial on my part.
So, that's a brief summary of this survey, and where the committee came out on it. If you have any brief questions, I would be glad to try to respond to them.
Also, this is something they are planning to continue to do periodically. So, I really do urge you, and it looks like, as I said, we had a good response rate. I think the one thing that would have really depressed me -- it certainly would have depressed me if we had come out really badly.
The worse thing would have been if nobody had responded, or two or three people had responded. Then we wouldn't have even had statistics. So, then you people would have been really unengaged. So, I was encouraged that we had a very good response rate, and we ended up looking good, but identifying areas for improvement. So, please, if you are surveyed again, or for the first time, do respond.
Yes?
DR. MC DONALD: Just a clarification on who were the subjects of the survey? I gather it was the members themselves, the staff. But did it include the people who come to meetings?
MS. GREENBERG: No, it was only the members, the executive secretaries, and in some cases, a decision-maker for each committee, although it appears to me from just the statistics that I got, that no decision-maker was actually queried for our committee. And I don't know whether they queried one, and he or she didn't respond. I have no way of knowing that.
And so, the issue with the public, it was the committee members' opinion as to how well the feel they informed the public.
DR. MC DONALD: I just wondered if the committees have ledgers of who comes to the meetings?
MS. GREENBERG: Definitely. And those people are all on our mailing list, or send them reports. And they are on mailing lists for various subcommittees. So, we do have a complete database of people who participate in the meetings.
And you might be suggesting, and we can suggest that back, although I don't know how to get a representative sample or whatever, but I don't believe that Gallup has made any effort to survey beyond at this point, the members and their agency.
DR. MC DONALD: The reason I bring it up is because I look at it as a coupling. We are sort of a coupler, and there is one side that is the government, and the other side is the public. And our function is only tested if we receiving on the two. And I think we might pat ourselves on the back, or criticize how we work together, and get a whole different view in terms of what we are supposed to be doing for this function.
DR. LUMPKIN: But if we look good this way, why look at it any other way?
MS. GREENBERG: Oh, a man after my own heart.
I think everyone was so busy at the session I attended, trying to interpret the thing, that that didn't really come up. But did it come up in the meeting you went to, Debbie? No.
But it's certainly a good point. I think if they could find a way that would be representative, to query or to survey. I don't know about the public.
DR. MC DONALD: The people that come would be the only thing you could probably do, because the public wouldn't know what you are talking about. I wonder whether any of the folks who aren't part of the committee or the staff would want to be able to have a say, grade us.
MS. GREENBERG: But I can say it was not the staff who -- only one person marked staff stuff. I was the only staff person who responded.
MR. SCANLON: As Marjorie said, I guess there was no decision-maker included in the ratings. But let me, from what I hear from our leadership in HHS, who presumably are the relevant decision-makers, this committee is viewed as a major asset and resource, capable of very, very sophisticated and nuanced and realistic recommendations.
And I think in general, I heard a lot about advisory committees, believe me. And I think our committee here, and this is not just because I'm associated with it, I think really is regarded as probably one of the best performing, hardworking, and a source of recommendations that are realistic and doable, and useful to everyone.
Obviously, the department can't always implement what the committee recommends. There are budget issues and regulatory issues. There are a lot of other factors that go into what happens. But I think the committee always gets a very serious hearing of its recommendations and considerations. And I think it really probably is one of the highest performing.
DR. MC DONALD: So, we really are a 5?
MR. SCANLON: Well, a 4.22.
MS. GREENBERG: Well, thank you for the opportunity to present this to you, and thank you for being an exemplary committee. I was a little disappointed they did not select us as one of the best practices, even though we came out so high. I really wondered why.
But then I heard we were compared against other scientific committees in the department. And there are committees that have very narrow focuses, and the committees make recommendations, and all of them are then adopted. It's like we will do what this committee tells us to do, they adopt it.
We are obviously much more complex and diverse, and all of that. So, I think given that that was our competition, we weren't selected as one of the best practices. But I think if you look at the data, we come out pretty good.
DR. LUMPKIN: Well, as I understand it, DARPA got managers who have a 10 percent success rate, are downgraded because they are not pushing the envelope enough. So, that's okay. We want to push the envelope.
MR. SCANLON: I thought, Marjorie, that they were going to get a request for increased renumeration for committee participation.
DR. LUMPKIN: Yes, you can double what I get.
MS. GREENBERG: I have always said I would be concerned about anyone who participated on this committee for the money.
Agenda Item: Reports from Subcommittees and Workgroups - Executive Committee - Dr. Lumpkin
DR. LUMPKIN: Great. Sorry for my absence as we got started. As I understand, the next item on the agenda, and then we'll go back to the organization issues is reports from subcommittees and work groups. The first item that we have on here is the Executive Subcommittee, which is meeting this afternoon.
So, I can give you a lot of insight into the decisions that we made, but then the other committee members might get upset. So, we will be having a full half day retreat, and we'll be looking at a number of issues. We will have a little bit of discussion before we adjourn on organizational issues to presage the discussion at the Executive Committee, so all the members of the committee can have some opportunity to have input.
Agenda Item: Reports from Subcommittees and Workgroups - NHII Workgroup - Dr. Lumpkin
DR. LUMPKIN: The NHII Workgroup, we met yesterday. We had some discussions which helped to frame our meeting for August 7. We are looking at dealing with issues related to establishing a set of measures for how we can monitor the implementation of the National Health Information Infrastructure. And we hope to at our meeting on the 7th, begin to have at least a first draft of some of those measures we can begin to look at.
The second is that we will be looking at the results of the conference. We expect to have a high level summary, not a detailed summary, to begin to discuss that on the 7th, to sort of plot out our activities over the next year or two.
And then finally, we felt that one of the areas that we thought needed a fair bit of attention, and did not appear to be getting as much attention as others continues to be the personal health prevention. And we intend to spend the bulk of our time on the 7th having some discussions on the committee about further activities related to the personal health dimension.
That's it. Anybody else on the committee want to add anything?
Okay, Standards and Security.
DR. COHN: Well, I think that the work of Standards and Security Subcommittee is really for us to review the two letters. I'm going to suggest that we start with --
MR. GILLIGAN: My name is Tom Gilligan, and I'm with the Association for Electronic Health Care Transactions. I noticed that yesterday as we dealt with the letter on the transition and the flexibility, that there was no public comment period. I would like to make a couple of comments before you all proceed with your deliberations. Is that appropriate?
DR. COHN: I have no objection. John?
DR. LUMPKIN: That's not a problem. Why don't we let Simon introduce the letter first. And then if you would like to make some comments.
DR. COHN: I was actually going to start off with the other one.
DR. LUMPKIN: Okay, let's do that. We're going to do the other letter first.
DR. COHN: I apologize. I'm just going to try to handle the simpler letter first, and then work our way into the more difficult issues. Obviously, what I really want to do is first just quickly read through our PMRI letter, and make sure it was acceptable to everyone.
I actually wanted to take this opportunity just to thank Jeff Blair, who is the vice chair in charge of PMRI, who has been doing just a terrific job in all of this, moving it forward, and obviously also thank the staff, Steve Steindel, Mike Fitzmaurice, Suzie Burke-Bebee, because they have been just really instrumental in terms of moving this forward.
If it's okay, we'll just sort of read it over and approve it?
DR. LUMPKIN: Go for it.
DR. COHN: Okay. "Dear Secretary Thompson:
The NCVHS commends you for your commitment to move towards uniform adoption of clinical data standards that you announced on March 21, 2003. NCVHS recognizes and appreciates that there is a new momentum to adopt clinical data standards that is driven by you and the CHI. Consequently, NCVHS is now working closely with CHI to study, select, and recommend PMRI standards. Given your strong interest in adopting PMRI standards, we thought you should be aware of the progress that NCVHS is making in this area, and of some observations that are likely to influence our next set of NCVHS clinical data standards recommendations.
NCVHS began the process of studying, selecting, and recommending patient medical record information standards under the directive of HIPAA. Accordingly, the Committee completed the NCVHS report on PMRI standards in August 2000. This report set forth a framework and guiding principles for the selection of these standards. NCVHS then employed these guiding principles to select and recommend PMRI message format standards to you. The Department adopted them as part of the first set of clinical data standards in your announcement of March 21, 2003. At the current time, NCVHS is evaluating PMRI terminologies, which we plan to recommend as clinical data standards for your adoption.
Here is a brief review of the status and direction of NCVHS activities that will lead to recommendations for PMRI terminology standards:
- In August 2002, NCVHS convened 1-1/2 days of hearings to solicit guidance from health care industry experts regarding the need, the scope, the priorities, and the criteria for selection of PMRI terminology standards. Testifiers recommended that the Committee focus on identifying those PMRI terminologies that can serve as a stable and consistent core, and then identify domain-specific terminologies that can be referenced or mapped to the core.
- NCVHS then prepared a comprehensive questionnaire to solicit information from all terminology developers that wished to have their terminologies considered for selection as PMRI terminologies. This questionnaire reflected the guidance we received from the testimony in August, and NCVHS criteria for selection of PMRI terminologies. We received more than 40 responses to this comprehensive questionnaire. The responses were analyzed to determine which terminologies were technically qualified to be recognized as part of the core PMRI terminologies. This initial set of candidate terminologies was included in a preliminary report that was received by NCVHS on March 25-26, 2003.
- NCVHS solicited additional information from terminology developers, and then updated the preliminary analysis, generating a revised list of candidates in a second draft report that was distributed to the Standards and Security Subcommittee on April 17, 2003. The revised list identifies 12 terminologies that meet NCVHS technical criteria for selection as a core PMRI terminology standard.
- NCVHS distributed this second draft analysis on May 2, 2003, to all terminology developers to solicit a final set of reviews, comments, and corrections.
- NCVHS invited users of the 12 terminologies that meet the technical criteria to serve as core PMRI terminologies to testify to NCVHS on May 21-22, 2003. In total, 24 members, including representatives from health care provider organizations, health information system vendors, and developers of related terminology services testified to NCVHS."
Should I continue? Any comments, questions?
"Although it is premature at this time for NCVHS to recommend which terminology should be selected as the initial set of core PMRI terminologies, which terminologies should be recognized as valuable domain-specific terminologies, and in which context they should or should not be used, it might be valuable for us to share with you the following observations that are likely to influence our recommendations:
- In August 2002 and May 2003 NCVHS hearings testifiers expressed overwhelming support for the government to take leadership by identifying a core set of non-redundant clinical terminologies for health care.
- In May 2003 NCVHS hearings, terminology users testifiers expressed broad support for the adoption of SNOMED-CT and the laboratory portion of LOINC as part of an initial set of core PMRI terminologies. The support for SNOMED-CT was dependent on clarification of licensure costs.
- Testifiers also indicated that NCVHS should recommend an appropriate set of drug and medical device terminologies as part of the core set of PMRI terminologies. However, there was no consensus as to which drug or device terminologies should be selected. NCVHS intends to explore further these two areas in hearings planned for August.
- After the initial set of core PMRI terminologies is selected, the issues of content overlap, interfacing, integrating, and mapping, as well as maintenance and distribution will be investigated and addressed in the September recommendations and/or subsequent reports.
NCVHS plans to present its final recommendations for the set of core PMRI terminologies to you at the end of September 2003. In the meantime, we hope that the information in this progress letter will be of value to you for anticipating next steps towards planning this central component of the NHII."
Comments, questions? I guess I would like to move.
DR. LUMPKIN: Moved by Simon. Seconded by Jeff. Is there further discussion on the letter? Seeing none, all those in favor say aye. Opposed, nay.
[Whereupon, the letter was unanimously approved.]
DR. COHN: Okay, and just to introduce the second one, and I'm sorry for making you sit there. The second letter I think we brought forward to yesterday about transition and contingency planning for the administrative and financial transactions final rule. I think as you all know, I thought it was a pretty clean letter yesterday, and of course as we do with all letters, we rewrote most of the recommendations during a somewhat grueling couple of hours of subcommittee meeting.
I actually want to thank all the subcommittee members for hanging in there. We actually have a new version that we'll be reading, as well as even additional last minute wordsmithing, and additions, which I don't believe really changed the intent of the letter.
Now, before I start reading anything, Tom, it sounds like you want to make a comment?
MR. GILLIGAN: I've got some points I'd like to raise. And in reviewing the letter that you all were working on yesterday, I noticed it did not recognize the range of the content of the testimony that was provided on May 20. There were a lot of different proposals that were laid out there. I suspect that a lot of folks on the committee did not agree with those recommendations, but they should be given some recognition, some of the different proposals.
With respect to the discussion that took place in the body yesterday, I have some observations. One of those observations is that there is a big difference between being compliant, and getting paid. An entity can be compliant, and still find its transaction not accepted by a payer. If a provider does the work to be able to send a compliant transaction, and declares himself to be compliant, who is say that he is not?
HHS may not be able to assess penalties until they have found and proven him non-compliant. If a provider or clearinghouse sends a compliant transaction to the payer, and the payer doesn't accept the transaction because it doesn't comport to the payer's implementation guide, do the implementation guides have the force of law? But adherence to the implementation guides may determine whether a provider gets paid or not.
There is also another reason why that is important. In the statute at Section 1175(a)1, it basically says that if a person, being a provider or a covered entity, sends a compliant transaction or transaction standard to a payer, then the payer is supposed to field that transaction and cope with it. He cannot refuse it, just because it's a compliant transaction.
That seems to me to put the burden on the payer to be able to handle what comes to him. However, with implementation guides, which are not recognized from the statute, that burden seems to have been shifted back to the provider again.
Some things that are happening now that weren't surfaced yesterday that may lead to a better understanding of the kind of a mixed up, messed up period that we are going to have after October 16. Payers are now rejecting files that contain multiple batches of claims, and many individual claims, because one or more claims may have had an error in them. They should only be sending back the faulty claims, or the faulty transactions.
Even when a submitter and payer move into production after October 16, there is still going to be an appreciable level of working out the kinks. That is going to add to the environment we are going to be experiencing. And I didn't see any reflection of that in yesterday's discussion.
The other thing I would raise is that there is no such thing as a perfect claim. Even when we have the transaction standards, we are all compliant, there are going to be claims coming through the pipeline that because of one valid reason or another, don't contain all the data elements required in the standard. And we are going to have to figure out how to deal with that stuff. And that is going to be a problem that we are going to have to address early in moving into working with the new standards.
Another thing, when Jeff brought up the subject of how long this transition period should be, and there was some concern on Jeff's part that perhaps six months was too long, and 60-90 days was mentioned as a period. I would submit to you that the level of people who are uninformed out there among the small providers may be large enough that the six month period may not provide enough time for them all.
The problem then becomes --
DR. LUMPKIN: Can I ask you to wrap it up? Because we are really not doing a public hearing.
MR. GILLIGAN: A couple more points. The problem then is not one of compliance, the problem is one of paying these people, or figuring how they are going to get paid, because if they don't get paid, they may create political problems that undermine support for HIPAA.
I would hope that you all include in your letter, when addressing what payers are permitted to do in terms of accepting and processing non-compliant claims, that you urge the secretary to urge the private sector payers to adopt the recommendations of paying claims under one of the sequences laid out in the letter.
And I would urge that the secretary direct the FIs and the carriers to continue to pay claims after October 16, even if they come in, in a non-compliant status.
Second, I would like to see something of a uplifting in your letter. There will be a lot of turmoil in October. I know that the commitment on the part of the vendor community is there to make this thing work. I suspect it's there on the part of the AHA, while I can't speak for them. They can speak for themselves. And we would hope that the NCVHS would ask the secretary to offer some encouraging words in any statement he makes about that stuff.
That's it. I don't have anything else.
DR. LUMPKIN: Thank you.
DR. COHN: Tom, thank you very much for your testimony. And I think you are reminding me that we will need to have ongoing sessions in our hearings in August, and probably even at our next full committee meeting about obviously how things are going. I think actually some of the issues that he has described are actually in the letter, and handled in maybe a slightly different way.
I will comment that I actually thought the letter was sort of uplifting, but maybe that's my view of the world.
Should I read the letter at this point? As you know, we went through a considerable amount of effort yesterday working on things. "Dear Secretary Thompson:
As part of its responsibilities under HIPAA, the NCVHS provides advice to you regarding the Act's electronic transactions and code sets provisions. On May 20, 2003, the Subcommittee on Standards and Security held hearings on the subject of health care industry readiness to comply with the October 16, 2003 implementation deadline."
And you all have copies of the revised work, and there are a couple of additional wordsmiths that I will mention as we go forward.
"Testimony was heard from a number of industry representatives and advisory bodies including AAHP, American College of Physicians, AHA, AFEHCT, Blue Cross/Blue Shield Association of America, Gartner Group, MGMA, and WEDi. From these testimonies, as well as from written statements and letters, the Committee concluded the following:"
DR. LUMPKIN: Were there any changes in this part?
DR. COHN: No.
DR. LUMPKIN: We went through that yesterday. I don't think we need to read through that. Let's get to the meat.
DR. COHN: Okay. Recommendations.
"The NCVHS recommends the following:
1. Oppose delays. The Committee believes that the October 16, 2003, deadline should not be extended. It does appear that most covered entities, with the possible exception of small providers, are making the investment to comply with the deadline. Extending the implementation deadline once again is unlikely to motivate the non-compliant provider to take a new deadline serious, while an extension will penalize those who have already come into compliance. At some point, a firm deadline must be imposed, and the Committee believes that the deadline should remain October 16, 2003."
Comments?
"2. Provide flexibility in enforcement during a transition period not to extend beyond April 16, 2004. The Committee recognizes that HHS has not yet issued a notice of proposes rulemaking regarding the substance of enforcing HIPAA's electronic standards and code set provisions. However, the Committee believes HHS enforcement could provide some flexibility by promoting good faith compliance by covered entities, without limiting CMS' ability to take enforcement actions against those covered entities that are not taking steps to comply. During the transition period, a covered entity that is otherwise compliant, would not be considered out of compliance if, for example:
- A payer accepts claims submitted in the HIPAA standard formate, but with only the data elements that the payer requires to adjudicate a claim.
- A payer exchanges transactions with a provider in a pre-existing non-compliant electronic format."
And we have added a third example here which is:
"- A trading partner has not allowed a reasonable amount of time to complete the necessary testing."
In other words, recognizing that there will likely be a logjam, and some of them have not had a chance to go through the testing. That particular bullet is likely to be further wordsmithed a little bit.
"We further advise the Department to remind covered entities of the necessity of establishing measurable milestones in developing a firm schedule of testing and deployment during this transition period."
DR. LUMPKIN: Can we read that additional bullet again?
DR. COHN: Sure. "A trading partner has not allowed a reasonable amount of time to complete necessary testing."
MR. BLAIR: Sufficient, instead of reasonable?
DR. COHN: As I said, I think this one may need to be wordsmithed a little bit. I'm not entirely satisfied with the wording on that. But I think it does reflect the view of providers, because of the payers being late in terms of implementation, giving providers time to start testing.
Stan?
DR. HUFF: I agree with the intent. But it's symmetrical with the other things. That is, we have to say something like if non-compliant transactions were sent because the trading partner has not allowed sufficient time, or something like that.
DR. COHN: An alternative wording would be, a provider exchanges transactions with a payer in a pre-existing, non-compliant electronic format, because testing with that entity has not been completed.
DR. LUMPKIN: Can you read that one more time?
DR. COHN: Sure. A provider exchanges transactions with a payer in a pre-existing, non-compliant electronic format, because testing with that entity has not been completed.
MR. ROTHSTEIN: How is that different from the second one?
DR. COHN: Well, maybe it isn't different then.
DR. STEINDEL: The second bullet just says you can exchange in a pre-existing format, and gives no reason. And you are just qualifying a reason for that exchange, and I don't think it is necessary.
DR. COHN: Okay, maybe we need to somehow meld the format with the content of this other bullet.
DR. LUMPKIN: Well, the thing is I think we need to get this letter out.
DR. COHN: Oh, I agree.
DR. LUMPKIN: And so, the question is, is the point that is not on the paper, is it of sufficient weight to delay getting this letter out?
DR. COHN: Actually, not in my judgment, but I would defer to Kepa and others, if this is indeed a critical issue.
DR. ZUBELDIA: The new point is saying the lack of sufficient time caused by a trading partner does not make you non-compliant. The problem is that we are trying to express it without expressing blame.
DR. LUMPKIN: But given that, let me just kind of push back a little bit, because what we are doing is giving examples. We are not including an inclusive list of items. So, the question is, if we don't have the wording for that, is that example of sufficient weight to delay the document? Or do we believe that we can get wording within the timeframe of this meeting, which is less than an hour?
DR. ZUBELDIA: Is the wording that Simon read, a trading partner has not allowed a sufficient amount of time to complete the necessary testing?
MS. GREENBERG: The problem with that is it's really subjective. Who is to say whether it was sufficient time? I guess what I'm wondering is why -- and I remember it was mentioned yesterday, but I didn't understand it then either -- why we have taken this third bullet from number two yesterday's letter, only a small proportion of those who are ready to transmit electronically the HIPAA way, have begun to test with their trading partners. That was removed from this letter.
And actually, I think that's really more of a finding. And I don't understand why it was removed. And I think it belongs more in the findings than here in these recommendations. It's a reason why there needs to be flexibility, or why some people aren't going to be in compliance.
I can understand the importance of noting that, that the testing with trading partners just hasn't been started soon enough, or not enough is going on. Why was it decided to remove that?
DR. STEINDEL: Marjorie, it is in the findings under three, major lags in industry testing with trading partners could result in the testing logjam.
MS. GREENBERG: Oh, so you thought it was repetitive, and that was why it was taken out of two?
DR. STEINDEL: And it was felt it was not necessary.
MS. GREENBERG: Well, actually, the previous one said there was a lag. And then it says there could be a logjam. I don't know. I think it is an important point in the findings, but I don't know that it needs to be in the recommendations. I agree with John.
DR. ZUBELDIA: I have another problem with the second recommendation. And this was subsequent to discussions we had yesterday in the subcommittee. I checked with out counsel, and Richard Marks(?), saying that that is not legal.
MS. GREENBERG: What is not legal?
DR. ZUBELDIA: The second bullet, to exchange transactions with the provider in pre-existing, non-compliant electronic format.
MS. GREENBERG: That would seem to be an extension of the deadline.
DR. ZUBELDIA: But that is not HHS's counsel. And you get two lawyers to agree, and you get two opinions.
DR. LUMPKIN: But as I understand what the second point is, and let me just see if I get this, compliance is determined by -- I'm a payer. My compliance is determined, is my system set up to receive any HIPAA compliant transaction that some provider is going to be sending to me. And when I send messages back to providers, will be I be sending those messages in a compliant format?
But as we discussed yesterday, Dr. Jones just didn't get with the program. And Dr. Jones is seeing patients, and sending in bills, and his system hasn't been changed. The alternative is either to go to paper, or to say to Dr. Jones, during this transition period, go ahead and send it in the old format. We will continue to accept it. But you really need to get on the stick.
That, I think, is a fine line of whether or not -- the issue is clearly Dr. Jones is not in compliance. But is the payer out of compliance to the point of getting sanctions? And I think that is where we are arguing for flexibility.
Jeff?
MR. BLAIR: I think that we have to stick to the wording here. Our recommendations are not indicating a change in the date for compliance, or whether things are in or out of compliance. What we are saying is that there should be flexibility in enforcement, and that here are some examples of areas where we could be flexible in enforcement. So that we do not extend the deadline, or we do not make a recommendation that is in violation of the law.
MS. DOYLE: I'm Theresa Doyle, and I'm with Blue Cross/Blue Shield Association. And I heard the comment about the Richard Mark's position. I would like to just say that we have looked into this considerably, and we would strongly with Richard Marks' position.
We believe that the non-enforcement policy is there is quite a bit of precedent actually among the department on a non-enforcement policy. And we certainly could cite those to the committee. But what we are saying here is we are not moving the deadline.
We are saying that the department would not penalize otherwise compliant entities who, because their trading partners are not ready to trade with them, they haven't completed their testing, their vendors haven't produced the software, whatever the case may be, that we could continue to trade with that partner in existing format. We know it works. We know that they can continue to get paid.
And we would do that until it is appropriate. And we have looked at this, and we believe that there is precedent, and that it certainly is legal for the department to take that.
MR. BLAIR: Could I just clarify one piece here? We are not recommending that there be non-enforcement. We are recommending that there be flexibility in enforcement. Because clearly, there may be egregious situations where people are not compliant, because they simply made no effort. And we are not saying that that should not be subject to enforcement.
MS. DOYLE: It is still the law, but HHS would not enforce again, otherwise compliant entities who continue to trade in the pre-existing proprietary format.
MR. HOUSTON: This wouldn't preclude enforcement against a non-compliant entity either. It clearly does not preclude enforcement against a non-compliant entity. So, it is silent in that regard. So, there is enforceability. It would be solely with the non-compliant entity, otherwise the entity is trying to do the right thing by working with a non-compliant entity.
So, again, there is still enforcement. It is just focused towards the party that really is causing the non-compliance.
DR. LUMPKIN: I knew there was a reason why we wanted to have lawyers on this committee.
DR. COHN: I think what I'm coming to is I think we ought to leave the two bullets in this example alone, not add a third bullet.
DR. LUMPKIN: Okay, is there anyone who -- I'm just going to try to get us out of here today. So, I'm going to suggest that we are going to do this a little bit more formally. This letter from the letter has been moved by Simon, and seconded by Jeff.
So, if we get to a point where we think that there may be some disagreement, we tend to work by consensus, but sometimes we may have to do parliamentary procedure. Having a motion on the floor allows us to then take a motion for an amendment, and then we can sort of see the sense of the group.
So, I just don't want to tyrannize the minority, because we have them. So, if there is a feeling that we want to do something there, it's a mechanism to add something. Anybody want to do that?
Okay, let's proceed to three then.
DR. COHN: Okay, well, let me just read the final paragraph on this one.
It says, "We further advise the Department to remind covered entities of the necessity of establishing measurable milestones and developing a firm schedule for testing and development during this transition period.
3. Provide additional clarification and guidance on:
- The details of what are considered compliant transactions, as well as recommend best practices on how covered entities can minimize the impact of imperfect claims. The Committee requests that the Department work with covered entities (were changed to industry representatives, which more clearly identifies what that is) to resolve any ambiguities and uncertainties regarding the interpretation of the standards as the transition continues.
- How legacy claims -- or those that were in process before October 16, 2003 -- should be treated. These often require several rounds of handling before final adjudication can be achieved. As a result, many claims risk not being paid, because they have been in the system for several months, and would be rejected because they would be in the non-standard format."
DR. LUMPKIN: Any comments? That second paragraph, is that new?
DR. COHN: No, that is actually unchanged.
DR. LUMPKIN: Okay, four.
DR. COHN: "4. Intensify outreach efforts. The Committee believes that the Department should further intensify its outreach activities to providers (and now we are adding payers) and other groups (so, payers is new there). It is imperative that the wide array of providers and payers be educated about implementation requirements, as well as receive technical assistance. Examples of additional outreach might include the development and dissemination of an implementation checklist and contingency planning checklist. Such educational activities also are needed to complement enforcement activities, especially if the policy goal is to first help bring covered entities into compliance and then into enforcement.
We appreciate the opportunity to advise you on these issues, John Lumpkin."
DR. LUMPKIN: Okay, any comments on Number 4? Any general comments or concerns about the letter as a whole?
DR. MC DONALD: Did we settle Number 2?
DR. COHN: I think Number 2 as it stands just has two bullets on it.
DR. MC DONALD: Well, specifically, the second bullet, I won't go too far with this, but I think what would be meant to be said is the payer was receiving claims from a provider in a pre-existing non-compliant electronic format, because the provider wasn't able to send them.
I just want to make sure that we have said what we mean to say without spending all at it, and I'm not positive this conveys what we meant to say.
DR. ZUBELDIA: We started talking about claims, and then I think John mentioned advice being received by the provider in the old format. So, it's not just claims, it's bi-directional. It could be that either one is non-compliant.
DR. MC DONALD: This doesn't seem to have any qualifications about otherwise non-compliant. This is just saying free for all.
DR. LUMPKIN: Can you tell us which part you are talking about?
DR. MC DONALD: I'm talking about the second bullet under Number 2.
DR. HUFF: Both bullets are qualified by the sentence that precedes them that says during the transition a covered entity that is otherwise compliant, and that's where you get that.
DR. LUMPKIN: Okay, are we ready to vote on this? All those in favor signify by saying aye. Opposed say nay. Great.
[Whereupon, the letter was unanimously approved.]
DR. COHN: Okay, those are our two letters. Please don't reorganize us on the basis of these letters. Just very quickly, we obviously have a lot of hearings coming up. We have August 19, 20, 21 is the next date of hearings. The 19th will be on drug and devices terminology, 20-21 will be an update on the claims attachment NPRM and standards, plus we will talking a relatively large amount on this ICD-10 cost impact study, and other information coming in from the industry on that.
I think I have been reminded by Tom's testimony that we will also need to provide an occasion just an updating on issues related to the administrative and financial transaction implementation, just to keep a close eye on that. Then we have hearings on October 21-21, and December 9-10.
DR. LUMPKIN: As mentioned by Jim earlier, I think that there is a lot of interest in the department in the role that we play in monitoring this issue as we get closer to implementation. So, I think that there is a possibility we may be called on to do other kinds of inputs. So, again, if that is in fact the case, we would encourage people who are listening or in the audience, that this is not the final opportunity to have input into this process of implementation, nor for us as a committee.
Okay, let's go to Privacy and Confidentiality. I see you have a letter too.
Agenda Item: Subcommittee on Privacy & Confidentiality - Mr. Rothstein
MR. ROTHSTEIN: Yes, we do. Just to remind you where this came from. Yesterday it was suggested by our chair that the issue of encouraging the department to begin a program to attempt to measure the effects of HIPAA should be put in a letter form.
The subcommittee met this morning, and approved a draft of a letter, which you should have distributed in front of you. And before we get to the actual wording of the letter, I want to point out a few things.
First, I need to declare for the record, a potential conflict of interest that I have, because I am in the final process of submitting a grant application to CDC to fund research on the effect of the HIPAA privacy rule on public health reporting. But that doesn't, I don't think, directly affect the importance of the recommendation in this letter.
A few other things I want to mention by way of background. First, in the letter itself, we deliberately left the issue of how to carry this out to the discretion of the department. In other words, we didn't say where in HHS this should be. There are a variety of options on how it should be done. And we were careful to write the language in neutral terms regarding not prejudging what the data would show.
And John Houston has suggested some changes that I will not read. I read the letter as written, and then we can go with those, if that is okay.
DR. LUMPKIN: Please, do.
MR. ROTHSTEIN: "Dear Secretary Thompson:
As part of its responsibilities under the Health Insurance Portability and Accountability Act, HIPAA, the NCVHS has written you letters with recommendations about substantive provisions and implementation strategies involving the HIPAA privacy rule. The NCVHS believes that now is an especially opportune time to develop methodologies and collect baseline data for analyzing the effects of the privacy rule.
We recommend that the Department initiate a program to measure the effects of the privacy rule. An ongoing program will help to refine rulemaking, implementation, and enforcement strategies with the privacy rule. Among other things, it would be valuable to study the effects of the privacy rule on such crucial matters as clinical care, public health reporting, and research. It could assess the degree to which the privacy rule has increased the level of privacy and confidentiality for protected health information in both objective and subjective terms.
The NCVHS would be pleased to assist the department in developing strategies for this program. We appreciate the opportunity to provide this recommendation."
DR. LUMPKIN: Is there any discussion on this?
MR. ROTHSTEIN: Let me now turn to the few minor suggestions that John had suggested. In the first paragraph, in the third line, after the word provisions toward the end, he recommends changing it to substantive provisions of, and implementation strategies regarding the HIPAA privacy rule.
DR. LUMPKIN: Okay.
MR. ROTHSTEIN: In the second paragraph, the third line, to make the word initiate, initiates.
DR. LUMPKIN: Okay. I'm going to take a motion on this. Richard, if you would move it.
DR. MC DONALD: Is this for the whole document, just these changes?
DR. LUMPKIN: Yes.
DR. MC DONALD: Because I would like to suggest a one word change also.
DR. LUMPKIN: Okay, go ahead.
DR. MC DONALD: There was a symmetry, and I think it may be actually to the point. We talk about the degree to which the privacy rule has improved or increased the confidentiality of protected health. And there is a more neutral tone on what it might have done to research, public health, and all that. I think it really would be more emphatic to discover potential deleterious effects.
MR. ROTHSTEIN: Has affected the level of privacy? Would that be acceptable?
DR. MC DONALD: No, I think the level of privacy is fine. I think that's actually what you would expect, it to improve it. If you are talking about one tailed P tests, you would expect that it would hinder research in public health. So that to make it symmetrical, I would say among other things, evaluate the potential deleterious effects of the privacy rule, or some other word like that.
MR. ROTHSTEIN: We originally had that actually, and we took that out. But I see your symmetry issue, and would you be comfortable just changing the word increased? We would expect public health to perhaps be adversely affected, and privacy and confidentiality to be improved.
DR. MC DONALD: Why wouldn't you want to cue them to that?
MR. ROTHSTEIN: But that's just sort of an assumption. So, we can just make both sentences neutral.
DR. LUMPKIN: Just have has affected the level of privacy.
MR. HOUSTON: The thought was when we drafted this letter that we didn't want to predispose anybody to whether it increased or decreased. We thought it was appropriate just simply just to do a measurement and decide from that.
DR. MC DONALD: I think the reason why it's not bad the way it is with the other symmetry is that if you just look at it, how could it make privacy less? You can't imagine in any kind of reasonable hypothesis that it would make privacy less. So, I think that's reasonable to go into a study thinking that, that it's likely to have improved it. And I think it's also reasonable to think that it only could make things harder in the other areas.
MR. SCANLON: I think some might say that privacy has been degraded.
DR. LUMPKIN: There has been a lot of criticism about the fact that while it is protected in some ways, in other ways the TPO, there is a lot of criticism about TPO -- there is criticism that TPO is not stringent enough in protecting privacy. So, I think making that neutral probably in the second one would be better symmetry, because if we are going to approach this, what we believe is that we shouldn't presume what the results of the research is going to show until we actually do the research.
DR. MAYS: One is a question, and the other one is a comment. Just so that I understand, when you are calling to develop methodologies for analyzing effect of the privacy rule, do you have specific things in mind?
MR. ROTHSTEIN: No.
DR. MAYS: Okay, I think that was it. It's almost like if the committee has some sense of direction or something it wants to suggest, I think it would be great, because this is really pretty open-ended. Can you give the department some sense of direction of what would do this if that would be helpful at all, I guess is what I'm asking.
And then my comment is the third paragraph where you are talking about clinical care, public health reporting, I would just say research endeavors, because it's more than just the research itself. It's kind of the enterprise of the research too that I think is being impacted in terms of what people are reporting.
DR. LUMPKIN: Could we perhaps then sort of add, say that public health reporting, research and the research enterprise?
DR. MAYS: Yes, I would be happy with that.
MR. HOUSTON: By the way, regarding your question though, the very first sentence in the last paragraph sort of speaks to if you think that there is merit to this, then there is the thought that we could assist or provide recommendations on how to proceed.
DR. LUMPKIN: And I think we would want to do that through a hearing process, rather than just trying to formulate that.
DR. MAYS: Okay.
DR. LUMPKIN: Okay, so we have added there in that sentence, among other things, it would be valuable to study the effects of the privacy rule on such crucial matters as clinical care, public health reporting, research and the research enterprise. It's more expansive. That allows us to address the issue that one is the ability to do research, and the other is how research is done and organized in the country.
Russ?
MR. LOCALIO: My question was answered.
DR. LUMPKIN: Great. Okay, I need a motion. Moved by John.
DR. MAYS: Second.
DR. LUMPKIN: Further discussion? All those in favor signify by saying aye. Opposed say nay. Any abstentions?
[Whereupon, the letter was unanimously approved a revised.]
MR. ROTHSTEIN: Thank you, John.
Let me just mention a few other things that the subcommittee is planning. We are planning to have a two day hearing in the fall jointly with the Standards and Security Subcommittee, dealing with the security rule and perhaps other matters. And we are also contemplating a series of hearings to assess problem areas with HIPAA compliance that have surfaced as a result of covered entities' attempts to comply, and some practical problems.
And the topic areas at the moment remain open. And we are going to develop the topics for the hearings. And let me say that to avoid having these really open-ended, where people start ripping the privacy rule from page one on, what we want to do is focus the hearings very narrowly on specific areas.
And we plan to generate the topics in three ways: through OCR recommendations of areas in which they have had the greatest inquiries and complaints; through subcommittee and full committee members who raised certain issues that they think are of particular importance; and members of the public who will contact by our Web site or otherwise, who raise issues that we should take up.
DR. LUMPKIN: Right.
MR. SCANLON: That would be scheduled after the October 16 implementation date?
MR. ROTHSTEIN: Yes, we are looking at probably some time in November for these hearings.
DR. LUMPKIN: Okay, thank you.
Vickie.
Agenda Item: Reports from Subcommittees and Workgroups - Subcommittee on Populations - Dr. Mays
DR. MAYS: The Population Subcommittee met yesterday, and our first pass was really to take a look at the secretary's response to the two letters that had actually emanated from our committee, the first being one on the potential budget impact on NCHS's NHIS. And then second that we discussed was actually the response in terms of the recommendations we forwarded.
The committee was really trying to determine what the most effective way would be during this process, of making sure that there was feedback to us, particularly from NCHS, about its activities, and how we would monitor that.
The next thing that we did was we spent a lot of time talking about the hearings that we have had. And the purpose of talking about it at kind of a broader level was to get a sense of kind of what some of the overarching recommendations might be.
As you know, we came to you with like 60-something recommendations, and we have since learned that we need to come to you with a lot less, more focused, and succinct and impactful. So, that was part of what yesterday really was about, as we have new members, as well as new staff. So we wanted to spend some time, since we had a significant amount of it, really trying to determine what the key issues are that are cutting across all of our hearings, as well as those that are specific to particular populations.
We also spent some time by looking at people's interests. I think it was very helpful for us to get a sense of broader population health concerns and issues that are in the committee. And I'm going to kind of take it as the task for us to not just infuse the full committee, but also to try and figure out -- and I'll make recommendations about that later when we do our Executive Subcommittee -- recommendations about ways in which those issues that are cross-cutting with other subcommittees, that we might be able to work on those.
So, I would say all in all, most of our time was spent kind of getting reorganized, and coming up with a framework for us to begin working on our report. So, the next meeting, which would be September, we should be coming forth with our populations-based hearing report.
And we will have a hearing in November right before APHA, which is a continuation of the meeting that we had with the Asian, Native Hawaiian, and other Pacific Islander populations. As you might imagine, that's a very diverse group, and the constituency was very clear we needed to hear from some additional voices.
So, the American Public Health Association meeting would be a good time. It's in San Francisco. It also is a site where, in terms of hearing from those individuals, they are either in Los Angeles or the San Francisco area, and it will facilitate a hearing.
Anything I left out, anybody that was at the -- Russell, anything else? Dale, anything else?
DR. LUMPKIN: Thank you. Any questions?
DR. COHN: Maybe this is a topic for this afternoon, but does the subcommittee have any plans around any other -- what I'm thinking of is disadvantaged minorities related to mental health issues. Is that at all on the subcommittee's agenda?
DR. MAYS: Part of what I think we need to do, and I may be preempting this afternoon is that there are some things on our plate, like for example, we should be monitoring functional status. So, there are several things on our plate.
And I think we need to do is to figure out, especially after hearing what the interests and now the expertise that is available to us both within the committee and staff that sit with us, I think the key to this is to not kind of take off and do it by just subject matter, but to take off and ask ourselves -- and that was what we did last time -- what is it that we need to accomplish, and what are the pressing issues?
And then I think we can kind of wrap those into what the broader agenda will be that we will pursue. So, right now, I can't tell you what the group is, but it is our work to try and figure out how to meet all the issues that are on our plate.
DR. LUMPKIN: Other questions? Bob.
Agenda Item: Reports from Subcommittees and Workgroups - Workgroup on Quality - Mr. Hungate
MR. HUNGATE: The Workgroup on Quality met this morning to work further on the report that we are working on, and discussed yesterday. We were augmented by Kepa and Karen Trudel, who helped in defining some of the pieces there.
Summarizing that, I think I can only say that we got about halfway through the recommendations. We didn't make it all the way through, so, we've got more work to do. But I think we have settled on a better approach toward making the recommendations coherent with what we heard and saw. And so, I think we made a great deal of progress in that part of it.
Other substantive action, we all kind of decided we wanted to join the panel discussion on the personal health dimension that is being part of the NHII that is being planned on the 7th of August. And we may have a workgroup meeting the following morning, if many people are there that afternoon. Beyond that, our pattern will just match the pattern of these committee meetings.
So, that's it for now.
DR. LUMPKIN: Okay, any questions.
MS. GREENBERG: I guess we are hoping to have a report for the September meeting.
MR. HUNGATE: We'll have another draft, but I wouldn't count on getting through the hurdle at that point. I'm learning. And I think in November, with confidence we can say that we'll have something that matches expectations. But I don't think we'll get there by September.
DR. LUMPKIN: The HIPAA report to Congress. Jim.
MR. SCANLON: I think we can handle this quickly. As you remember, the full committee is required by the HIPAA statute to provide an annual report to Congress on implementation of HIPAA, all of the standards, including privacy and security as well.
And staff to the committee have been drafting the 2002-2003 version of the report. And I would like to propose a procedure for preceding with that to the full committee. The format will follow that of previous years, though we would be open to any shortening. We may even want to consider a letter report of about four pages or so. But let me propose a procedure.
We will provide a draft as soon as the factual information is updated in terms of the status of all of the standards, identifiers, privacy, security, and so on, and committee activities related to that during 2002, and I think we are carrying it forward to the end of this month.
My proposal is that we provide that to the Executive Committee via e-mail. We get feedback and edits from the Executive Committee, and then circulate it once to full committee for approval via e-mail procedures, pretty much what we did last year.
MS. GREENBERG: Finalize it by e-mail?
MR. SCANLON: Well, the draft we have here would go to the Executive Committee, because the HIPAA now involves virtually all of the subcommittees now. The chairs could give us their edits and updates, any other issues. And then we would revise accordingly, and circulate the next draft to the full committee via e-mail.
DR. LUMPKIN: With sign off by each committee member by e-mail.
MS. GREENBERG: I think if it's a committee report, we will need a conference call. And it hasn't been discussed in an open meeting. We will need to approve it in a conference call that is open to the public.
MR. BLAIR: I feel perfectly comfortable with the procedures, Jim. One of the things that I think would be very helpful is in a sense, HIPAA is getting reborn. And I think it would be very much to our advantage in our report to Congress right at the beginning, to point out that HIPAA has provided a catalyst and a foundation which is a difficult transition with the privacy regulations, and the financial, administrative transactions.
Those are difficult stages to get through. But it has provided a foundation which is enabling us to move onto the National Health Information Infrastructure, which is enabling us to be able do the things that CHI is doing, and possibly some other initiatives that the administration might have that they are going to be building on as well.
So, I think that there is sort of new life here, that I think would be very helpful to reflect right at the very beginning.
DR. LUMPKIN: I think we need to resolve the issue, which I don't think we necessarily need to resolve here, about the need for having an open conference call.
Simon?
DR. COHN: I guess to me there is a fundamental issue on timing. And we need to reflect a little bit about when we should be having this annual report submitted. I guess I'm a little concerned about sending off a final report on how well we are doing a month before the October 16th implementation, and making comments.
We might want to consider this maybe as an Executive Committee issue of having this move a little slowly, and being able to reflect on the October 16th implementation, and have the final report after that meeting voted on in that November meeting. I would say that's not a final comment.
DR. LUMPKIN: I think it makes a lot of sense. And we can just put in the introduction that this report is delayed this year, because we wanted to comment after the implementation dates were completed. So, we have an even better -- we'll start working on a draft. We'll circulate it. We then intend to vote on it in the full committee meeting in November.
DR. COHN: With review in September, hopefully.
MS. GREENBERG: So, it won't come to the September meeting at all?
DR. LUMPKIN: It could.
MS. GREENBERG: It could, but it will be approved in November?
DR. LUMPKIN: That's correct.
MR. SCANLON: So, it would be a two year, potentially, 2002-2003.
Agenda Item: Future Agendas for NCVHS Meetings - Dr. Lumpkin
DR. LUMPKIN: Yes. So, that solves that. So, we don't need a vote.
We have 20 minutes. Are there any items related to upcoming meetings? September I think that we will want to have some time in the full committee to discuss the quality report.
MR. HUNGATE: Yes, I believe we should have some time.
DR. LUMPKIN: Any other things coming up in September for action items?
DR. COHN: PMRI report.
MS. GREENBERG: The populations report? Which one is this?
DR. MAYS: The populations.
DR. LUMPKIN: That's an action item.
MS. GREENBERG: Now, the Subcommittee on Standards and Security will be receiving the impact analysis on transition to ICD-10-CM, and 10-PCS.
DR. COHN: Yes, we hope to come forward with a letter. And there may be need to be a presentation from the person doing the study in September.
DR. LUMPKIN: So, September is starting to sound a bit full.
MS. GREENBERG: And in fact, it may be that other than presentations associated with these milestone reports or recommendations, we may not have a lot of time for additional presentations.
DR. LUMPKIN: Other than the department. We would like to hear from them.
MR. GREENBERG: We have had some recommendations over a period of months, and then some more recently from one of our members on topics. We can probably discuss those during the Executive Subcommittee. But if anyone who isn't going to be at the Executive Subcommittee meeting has topics they want to suggest for September or November, either let us know now or later.
DR. MAYS: By November will the Board of Scientific Counselors be in place for NCHS?
MS. GREENBERG: I think they are hoping. I think what Jennifer Madden said yesterday was it's been established. I think the members are accepting, or they might have a full roster. And they are hoping to have their first meeting in the fall.
DR. MAYS: If indeed they have their meeting, maybe the November we could get a report from them, a report or an update from somebody.
MR. SCANLON: From Dr. Sondik maybe.
MS. GREENBERG: Right now he is scheduled for September, but he is a liaison to the committee. He wasn't able to attend this meeting.
DR. MAYS: Maybe we could put that on like the November, because why don't we wait. I think she thought October they may have a meeting. In November they could report on the meeting.
MS. GREENBERG: Well, and also, I think for discussion in the Executive Committee is the liaison with that group, since that has been discussed in the past, and it looks now like it is being established and organized.
DR. HARDING: One of the issues in the poll that Marjorie showed us was the issue of being prepared for the meetings. The ICD-10 issue is one of the most complicated issues I think this committee will have approached in the last few years. Many people use ICDs and CPTs and so forth, and many people don't that are on the committee.
And if there was some way to get background, and give plenty of preparation time for that decision, because that's a very important decision that is going to be coming up. It's probably one of the most important decisions that this committee has made for a long time.
And if we could have a lot of preparation for that, it would be helpful I think, to all of us that aren't on the committee that has been discussing it on a regular basis.
MS. GREENBERG: I should mention in regard to that, that while the subcommittee has been liaising with the impact study, which was commissioned by the subcommittee, and the principal investigator has, I believe, contacted subcommittee members for further input. And I encourage any of those who have not yet responded to his call, to call back.
But if there is anyone on the full committee who would like to have an opportunity to talk with him also about implications of benefits, impacts, et cetera, just let Donna Pickett know, and she will have Martin contact you.
DR. LUMPKIN: Are we expecting then that the report will give us the kind of background that Richard is talking about?
MS. GREENBERG: No, this will be on the impact.
DR. COHN: Marjorie, I actually really listened to what Richard is saying. And I think there is a level of information that we need to send out, to put together that is really beyond a Donna Pickett presentation. There is some substantial background that sort of begins to build a level of understanding.
I think we are going to have to handle this offline, or maybe in the Executive Committee. I don't know where we are necessarily going to find it. I think we are going to get some things from Martin around is there value, an enunciation of value, as well as some sense of what it's going to cost, or how it is going to impact things. I think you are looking for something probably a step or two before that, as something like why should I be interested in moving forward.
DR. LUMPKIN: I think the issue is not that we haven't had discussions and so forth in the committee. But if you are not using the stuff every day, when we get to point of having the decision, it would be useful for there to be some reading material that we can have, so that people can get up to speed again prior to the meeting. Some sort of summary document or something with some background I think would be useful.
MS. GREENBERG: I think what would be helpful, since it's likely my staff will be involved in preparing some of this, is I don't remember which meeting it was -- was it last September when we actually did the briefing, and we had timelines and various other documents, which I think led to the recommendation of the impact study.
If people could either look at those, or ask us for copies of those again, we will provide them. And then tell us what additional they feel they need. And then we will try to make sure we have that information out to people in a good amount of time.
DR. LUMPKIN: Now, we have had some additional members since we had that discussion. So, I think it might be helpful if we have electronic copies, to send out an e-mail that would have all the background information.
MR. GREENBERG: We'll just send it to everybody then.
DR. LUMPKIN: And then if, in looking through that, there are questions or issues that you want more background, then you can respond.
MS. GREENBERG: But do let us know what it is you feel you need, and we'll try to provide it.
Agenda Item: NCVHS Organizational Issues - Dr. Lumpkin
DR. LUMPKIN: Okay, the last item before we adjourn is -- one of the things that we have done as an Executive Subcommittee almost on an annual basis is to look at the structure and functioning of the committee and its subcommittees and work groups.
I'm kind of a firm believer that form needs to follow function. And so, as function changes on the committee, we need to look at whether or not we are established in ways to maximize the output from each of the individual members, and minimize the hassle and aggravation, because all of you are very busy people, and this is a very, very busy committee.
So, given that, what we are going to do in this short period of time, because we will be having a discussion in the Executive Subcommittee, and you are all invited to stay for that, but should you choose not to, if you have any thoughts or comments that you would like to make, even if it's just identifying some problems.
I'll just tell you right off there is one problem that you don't need to identify, and that is that if you look at how things break down, it's very hard to participate in things on the population side, and on the standards, security, privacy side. And we have been struggling with that as long as I have been a chair, and we haven't come up with any great solutions. But that is an ongoing problem that we are still trying to address.
But if there are other problems that members have identified that you would like the Executive Subcommittee to address, feel free to make some suggestions, particularly if those suggestions have solutions attached to them. That would be really appreciated.
MR. HOUSTON: We have discussed this before regarding the placement of the responsibility for the HIPAA security rule, and what committees it really falls on. And I know we have talked to Simon and others about is it really more in line with privacy, is it sort of between the two?
And I think what is happening now is that because security is aligned with -- it's on the same committee as the standards, is that we end up with two separate components of HIPAA that are in the compliance phase at the same time on the same committee. And I just want to make sure that we give security its proper due.
Again, I think that committee is extremely busy with everything is going on. I'm just not sure what the answer is, other than that I think we need to make sure we don't drop the ball on security as we are concentrating on everything else.
DR. LUMPKIN: And for this we will have to blame John Danaher and Mark Rothstein, because they are about the only ones who aren't on both committees. But no, it's an important issue. We'll add that discussion of security. It does bear some discussion.
MS. GREENBERG: You are talking about a joint hearing in November?
DR. COHN: Let me be very explicit about what we are doing, because I am very sympathetic to John's view. On the other hand, I also am concerned that we want to have proliferation -- when I first came on, we had lots of subcommittees that had two or three members on them. And I don't know that we have the fire power to handle that sort of activity.
We are going to be having a hearing on security this fall, and this will be sort of co-sponsored by privacy and standards, both of which John sits on, not by choice, but he does sit on. My view is that we are going to have John sort of take the lead in terms of doing a lot of the work in putting it all together. We don't know that exactly, but that was certainly my intent. Obviously, we'll help you, sort of see one, do one, teach one.
MR. HOUSTON: I would be more than happy to take the lead on the security-related activities. Again, I'm just a little concerned with the Standards and Security Subcommittee, that is has got two separate rules that are during the compliance period. And they are very different, and I have a great interest in security, and my knowledge of transaction standards is very, very limited, nor is my interest really there. But I'm attending those meetings, because I want to make sure we appropriately address the security rule.
MR. ROTHSTEIN: Well, if we had unlimited personnel, an obvious way of approaching it would be to have a subcommittee on each of the three main HIPAA rules. But as John mentioned earlier, to do that now, we would have subcommittees with two and three members on them.
MR. HOUSTON: I agree. I understand that.
DR. LUMPKIN: And not in the sense of wanting to discourage comments and input on this, but I kind of like Simon's suggestion, and your offer to sort of play that role in trying to make sure that the work is synchronized. That's greatly appreciated.
DR. MC DONALD: I was just going to emphasize the tight interaction between security and the messaging standard issues. And e-mail message gets into security. They are tightly intertwined. So, I think it's more technical than privacy, and I think if we had enough people that we could load it up with all right people, it would be all right. But what you are saying is let's get parallel work paths.
MR. HOUSTON: And again, I have always sort of aligned privacy to security very closely. I guess it depends on your perspective as to how you align it. It's something I don't think we want to lose traction on, because I think it is something that very well could cause us similar problems as we saw with privacy, as well as transaction standards.
We just really haven't done much yet, and that may be part of my concern, is we do really need to -- now that we have testimony we are going to schedule, I think that would be helpful. But I definitely want to make sure it doesn't fall by the wayside as we are doing everything else.
DR. LUMPKIN: Okay, good point.
DR. ZUBELDIA: John, on the conflict between the populations and the other subcommittees essentially, where they can't meet at the same time. It's also happening with the Quality Workgroup. Perhaps one or both of them could meet the day before the full committee meeting, or the afternoon before the full committee meeting, rather than in the gap in between the first afternoon and the next morning. It's a suggestion.
DR. MAYS: I come from California, so it doesn't work for me. It's another full day for me.
DR. LUMPKIN: Again, the balance and trade off is that we could extend the meeting to three days, which it would mean for Vickie if we were to do that. But the struggle is I know that there is some sort of stipend, but you guys aren't in it for the stipend, I'm sure.
It doesn't pay the difference between the per diem and the cost to have dinner around this place. I know you're not in it for the money. You are here giving your time to help our nation address these issues. So, I just want to be sensitive to trying to maximize your time, without asking too much of members.
DR. MAYS: I was going to say to Kepa, again, when we have the discussion, one of the things I'm going to try and do is to suggest about putting more of our stuff up in a place where other people can also look at it. It doesn't take the place of the discussion, but you can at least peak at things. I'm going to see if we can't use technology a little differently in our committee. Sometimes we might ask you, can you look at this?
DR. ZUBELDIA: A members only section on the Web site?
DR. MAYS: See, I don't know what we can do in term of the federal government. I don't know what we can do. So, I'm actually going to raise the use of technology for us in our subgroup, and to have people be able to come in and out to use it. But again, the last thing I know are the rules.
MR. HOUSTON: I don't know if this is technically feasible. I don't have a problem going to three days, personally. But it would be nice if there was a place when were not -- if there is a lull or a lag time where we really don't have a commitment to a subcommittee, a place to work on-site, for somebody to go and work on other business that maybe they can do during those periods. I don't know if that is feasible or not in this environment.
MR. SCANLON: We've done it on an individual basis. We can find individual offices. Just see one of us.
MS. GREENBERG: At least these are all things we can talk about. We can talk about maybe one meeting a year, having it be a three day meeting, as opposed to -- we have made the Subcommittee on Standards and Security has turned into a three day meeting now on several occasions. But I think on a regular basis probably this would not be feasible.
MR. SCANLON: I guess the other thing, when we try to recruit new members, we are probably already at the stage where we can't ask you any more time. If the committee were willing, that would be up to you. But I don't think we can ask you to add another day to the full committee meeting. People are sometimes turning us down as new members, because between the full committee meetings, and the subcommittee meetings, it's taking quite a bit of time. We have probably reached the point of diminishing returns. We just have to find a better way to do it in the time that we have.
DR. HARDING: Last year we had a month of days committed to this meeting, over 20 working days.
DR. LUMPKIN: Do we have any other items to discuss?
[Whereupon, the meeting was adjourned at 12:33 pm.]