[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Room 705A
Washington, D.C.
DR. LUMPKIN: I'd like to first remind everyone that as with almost all of our meetings, we will be going live over the Internet, so for anyone who wants to be listening in, they can download it. It also means we need to make sure that we are talking directly into our microphones, and that we identify ourselves when we speak, this particularly for the people who are sitting around the room and in the audience.
We are going to start off with introductions. My name is John Lumpkin. I am the Director of the Department of Public Health in Illinois, and I am also the Chair of the committee. So we'll go with our introductions. Jim?
DR. SCANLON: I'm Jim Scanlon from HHS. I am the executive staff director for the committee.
DR. STARFIELD: I am Barbara Starfield from Johns Hopkins University and member of the committee.
DR. NEWACHECK: I'm Paul Newacheck from the University of California and member of the committee.
DR. EMERSON: I'm Mary Emerson from the Health Care Financing Administration.
DR. MAYS: I'm Vicki Mays, a new member from the University of California, Los Angeles.
DR. LUMPKIN: Welcome.
MS. WARD: Elizabeth Ward from the Foundation of Health Care Quality in Seattle, and member of the committee.
DR. BLAIR: I'm Jeff Blair, Vice President of the Medical Records Institute and member of the committee.
DR. GAYLIN: I'm Dan Gaylin from ASPE.
DR. IEZZONI: Lisa Iezzoni, Beth Israel Deaconess Medical Center and committee member.
DR. ROTHSTEIN: I'm Mark Rothstein from the University of Houston and member of the committee.
DR. FYFFE: Kathleen Fyffe. I work for the Health Insurance Association of America, and I am a member of the committee.
DR. ZUBELDIA: Kepa Zubeldia with Claredi Corporation, member of the committee.
DR. FRAWLEY: Kathleen Frawley, St. Marys Hospital, Passaic, New Jersey, member of the committee.
DR. COHN: I'm Dr. Simon Cohn from Kaiser Permanente and a member of the data.
DR. COLTIN: I'm Kathy Coltin from Harvard Pilgrim Health Care and a member of the committee.
DR. GREENBERG: I'm Marjorie Greenberg from the National Committee on Vital and Health Statistics, Centers for Disease Control and Executive Secretary to the committee.
DR. ROADY: I'm Dan Roady, I'm with the American Health Information Management Association.
DR. KANAAN: Susan Kanaan, contract staff to the committee.
DR. KOLODNER: Rob Kolodner from the Department of Veterans Affairs and staff to one of the subcommittees.
DR. TATE: Mike Tate, American Dental Association.
DR. PETTICOURT: Doug Petticourt. I am here for the Coalition for Health Information Policy.
DR. BEEBE: Michael Beebe with the American Medical Association.
MS. RUSES: Chris Ruses, BNX Health Systems.
MR. GREEN: Tim Green, Medicare Payment Advisory Commission.
DR. POLLACK: Earl Pollack, National Academy of Sciences.
DR. JACKSON: Betty Jackson, National Center for Health Statistics staff.
DR. MC LAUGHLIN: Mark McLaughlin from McKesson HBLC.
MR. SANDELL: Steve Sandell, Centers for Disease Control and Prevention and staff to the work groups of the committee.
DR. HORLICK: Gail Horlick, Centers for Disease Control and Prevention, staff to the Subcommittee on Privacy and Confidentiality.
MS. SIMMONS: Adele Simmons, Office of the Assistant Secretary for Planning and Evaluation.
MS. SHORT: Good morning. Kelly Short from the Joint Health Care Information and Technology Alliance.
MS. WILLIAMSON: Michele Williamson, National Center for Health Statistics.
MS. LENNON: Ann Lennon with the Society of Professional Benefit Administrators.
MR. HITCHCOCK: Dale Hitchcock, ASPE, staff to the Subcommittee on Populations.
DR. JONES: Kathryn Jones, National Center for Health Statistics, staff to the Executive Subcommittee.
MS. CURRY: Ann Curry from the Academy of Managed Care Pharmacy.
MS. CHU: Cassie Chu, BNA.
MR. BOSOWITZ: Rye Bosowitz, NICDS.
MS. UPCHURCH: Patrice Upchurch, National Center for Health Statistics.
MS. ADLER: Jackie Adler, National Center for Health Statistics.
MR. ROC: Andy Roc, ASPE.
MS. GUILFOY: Helena Guilfoy, Health Systems.
MS. BATTLE: Deena Battle, Magno Systems.
MR. GOODRICH: Tim Goodrich, Christian Science Committee on Publication.
DR. LUMPKIN: Thank you. Welcome all to this meeting, which is the last meeting of this year. Mark, we are pleased that you are here. We thought all the lawyers were down in Florida.
MR. GOODRICH: Only the high-paid lawyers.
DR. LUMPKIN: Oh, and Kathleen. She says she has other qualifications. She doesn't like to associate herself with the lawyers. That is the reason why we have all three of the lawyers off to themselves.
This is our last meeting this year. As such, we have a number of items that we will have on our agenda, so we need to proceed directly to them.
I think that at this point, we have new members who are arriving, and we have some old members who will be leaving the committee. I wanted to thank the members who are leaving. We will have a little bit of something this afternoon, but I just wanted to end the introductions to say that we will certainly miss their contributions on the committee, and look forward to getting to know the new members. As always on the committee, it is a time of change, but the challenges that we face in information policy continue on.
The first panel that we have, if the panelists will introduce themselves and then we'll start off with Jim Scanlon, just so folks can hear their voice again on the Internet.
DR. SCANLON: Thank you, John. Good morning, everyone. We are going to spend a few minutes this morning with updates from HHS, some reports from HHS.
Let me first report on a couple of acting situations. Karen Trudel couldn't be here today, nor could Bill Braithwaite, who is in Spain. We actually let Bill take a couple of days off. Mary Emerson will be reporting on the data standards initiative within HIPAA. John Fanning was going to give a very brief report on the status of the final privacy regulation, but John had a dental emergency this morning. I hope I am not revealing any medical information. I don't think he will be here. He may be here later this morning. We can get a report then.
At any rate, let me start off with some reports and some updates within HHS. I'm going to give a report on where we are with some of the recommendations that the committee has sent into the Department. But first, I wanted to talk about two new areas that the Data Council was asked to direct some attention to in the months ahead.
At the November meeting of the Data Council, there was some discussion on some developments in the WHO, the World Health Organization, and some of the data activities, data resolution and so on, some of the directions that WHO was heading.
You will recall, the Council was asked to put together an expert committee to begin to serve as a focal point within HHS to consider some of these directions and to be able to provide some unified comments back to WHO on some of these activities.
A couple of these NCVHS has been very active in already, but let me just bring everyone up to date on where things are, and obviously we will want to continue and put up the NCVHS on some of these.
You will remember last year, the World Health Organization published a report called World Health Report: Health Systems, Improving Performance, where they pulled together indicators of the system's performance of health care in all of the countries in the world.
That report was not met with unanimity, and there was some criticism. It was a mixed reception, I think you will all agree. In fact, I think at the September meeting of this committee, Barbara Starfield, Dr. Starfield gave a preliminary critique of the strengths and the weaknesses of how that particular health systems performance appraisal was approached.
At any rate, because of the reaction to the report, the WHO has asked member countries for some consultation and advice on the next iterations of that formulation and of that report. I believe that the next World Health report will focus primarily on mental health. At least, that is what is on the agenda so far. But there will be an analysis and continuing information on health systems' performance as well.
So I think I have left at your places the letter from the Director General of WHO to the Secretary here, asking for advice and consultation on these issues. In addition to the letter, there is a list of topic areas in this area of assessing performance of health systems that I think WHO was specifically looking for. It includes such measures as health status measures, inequality measures, system responsiveness measures, financial measures and so on. I'm not going to go into any detail here. I leave it here only for your perusal later. I think we will have an opportunity to provide more feedback to that as well.
A related matter from the WHO, and I think Dr. Sondik will talk a little more about this later. The WHO has an expert committee on measurement and classification in health. They are considering several resolutions relating to international data improvements. Again, Dr. Sondik will go into some further detail. But again, the Data Council's subgroup was asked to look at how HHS might want to approach some of these areas.
The three areas that were specifically the subject of resolutions include one of the areas that the committee has already looked at, the ICIDH-2, and what is its role and what is the process for its revision and implementation. You have a whole set of these resolutions and their texts with narrative sitting at your place as well.
Fortunately on the ICIDH issue and resolutions, we have a good start, though who knows where we will actually be going.
The second area of the resolutions -- and again, these resolutions would have to be considered by the executive board of WHO, then they have to be adopted at the World Health Assembly. But at any rate, I think these are resolutions that are being given serious consideration.
The second one relates to what are called summary measures of population health, or summary measures, for short, the harmonization of such measures for all the countries and what in fact makes them up. I think in the report that WHO published, they used the measure DALES. There are several of these.
Like any other summary measures, they have strengths and weaknesses. Some countries feel this is an appropriate summary measure if you have to reduce everything to one measure, and others feel it doesn't provide a very -- in terms of the values it reflects and the way it is constructed, it doesn't provide a good measure of the burden of health and disability and so on in the member countries.
So again, we will have our work group looking at the situation with summary measures. Ed Sondik will talk much more about this. Ed chairs a working group on summary measures here in HHS.
The third area and an interesting one had to do with the harmonization across the member states and the measurement of health status as we call it in the U.S., or health states, as the WHO refers to this. Again, they had actually gotten so far as to propose a common instrument for inclusion in surveys, interviewer mail surveys that would get at some of the critical measures in health status.
I don't think the common instrument is now part of the resolution, but clearly, they would like to head in this direction, where there would be a common framework for all of the member countries to use in assessing health status.
Again, this information would feed into annual or periodic assessments at WHO on health status and the performance of health systems in the member countries.
You will hear more about these three resolutions. I think Ed Sondik will actually go into a fair amount of detail in the next presentation.
A second area that the Data Council was asked to look at at our September meeting was the area of substance abuse surveys. There are several of these surveys that provide semiannual information on trends and prevalence of substance abuse and use in youth. One is school based, another is household based.
When they are released, these are obviously very high profile kinds of surveys in terms of what they are measuring and the sensitivity. When they are released, there is often some confusion about, how do they differ and what exactly are the trends and what exactly are the levels in this area. So the Council was asked to pull together a work group to look at what are these surveys exactly, how do they relate to each other, and each one of them represents a different perspective on substance abuse in youth. In fact, each one of them is a much more comprehensive survey than simply substance abuse, but they overlap in that area, and I think the Council is going to put together a work group to try to make sense as a guidance to everyone in terms of interpreting that information, what might be better coordinated.
The other activity I think I mentioned at the September meeting, was the formation of a data strategy group in the Data Council. The group is now well underway, and it has been focusing on three areas.
The group was asked to look at -- first of all, look across Health and Human Services, look at some of the previous recommendations that have been made in these various areas, including such areas as racial and ethnicity data, health systems data, performance measurement, Healthy People, eliminating disparities, and to try to pull all these needs of data into some overall comprehensive framework and then to come forward with a multi-year strategy for addressing some of these in a coordinated framework.
The group is now working on three parallel tracks. The most immediate aspect of the committee's work is to assist with the budget process for the next fiscal year. Obviously, we don't have a budget for this year, but budget planning goes on, and there are certain aspects of a need for a coordinated approach to data investments in the formulation of the fiscal year 02 budget.
So much of the work of the data strategy committee has been directed at budget formulation for 02, and I'll say a little bit about that in a minute.
A second area is actually working on the long term data strategy itself. That hasn't gotten as far yet, because it has taken a back seat to the budget process. The third area, the committee has been asked to take on a couple of special projects from the Council, one of them related to what are the most critical data needs to track eliminating disparities in health care, and the leading health indicators. You will hear more about this from Dr. Lurie tomorrow.
In terms of the data strategy group's work on the budget, HHS identified as part of the fiscal year 02 budget very preliminary planning. The area of improving data and information for decision making was identified as an area of special emphasis for budget planning, and agencies were asked to look at their needs in this area and to give special attention to these areas. The area of IT was also included as a special emphasis area, very preliminary budget planning.
Agencies were asked to look at the critical data gaps in these areas, to look at needs for building Health and Human Services information systems, next generation systems, and finally for delivering information to consumers and decision makers and so on.
In their very preliminary budget process, the agencies actually came forward with a number of recommendations and proposed enhancements in these areas. Our data strategy committee is now reviewing all of those enhancements, looking at how they relate to each other, coordination, we are looking at some sense of priorities as well, and we are looking at what may have been missed, in terms of are there critical areas in improving areas for decision making that may have been missed, or that is falling through the cracks, or that needs some attention.
So the data strategy committee is well along the way on that work. I think we are hoping to have something completed by the December meeting of the Data Council with some analysis and some priorities and some recommendations.
Let me go now just very quickly to some of the recommendations of the committee and where the status is now. The letter to HHS that the committee sent relating to the ICIDH-2, there was some alarm expressed about the haste and the process with which the revision was being moved forward at WHO. The letter had the immediate effect I think of drawing attention to this issue within the Department and our international health office which deals with WHO. I think there have already been some communications with WHO staff about what some of the concerns are.
This will also be further followed up in terms of the data resolutions that we will be asked to send formal comments on from HHS and from the U.S. later this year.
Marjorie, you may want to add a little bit more. Ed Sondik will talk a little bit more about this as well.
DR. GREENBERG: I'll actually be reporting a little bit on that right before lunch.
DR. SCANLON: Second, remember that the NCVHS sent in some concerns relating to HIPAA implementation, early implementers and some concerns about insuring a smooth implementation. That letter included a -- I believe it was approved at the last committee meeting -- that letter included a number of areas where some focus and attention should be directed at future implementation.
That letter has been referred to our health data standards committee, which is chaired by Karen and Bill. I believe they actually discussed this at their meeting last week, so we'll have a better sense of where these various things stand and what the best way to proceed on some of those areas will be, probably another couple of weeks. Responses are being drafted to both of these, by the way.
The letter relating -- and the whole set of recommendations relating to the patient medical record information standards and so on. This was submitted in July, and I think both Jeff and John Lumpkin gave a very nice briefing to the Data Council at the August meeting.
You will recall that there were several types of recommendations there. Some related to the HIPAA data standards adoption process. Some related to capacity building and policy development needed to make progress in this area, and the third related to areas where research and evaluation and demonstrations were needed and should be promoted in terms of developing the infrastructure here.
The Council has asked all of our agencies as well as DoD and VA to review the findings very carefully and the recommendations, and look at what they could do. First of all, a general assessment of recommendations, and then number two, are there any areas that they could begin to move forward on.
Much of this was thought of as areas they came forward on in connection with the new budget. And unfortunately that has been delayed a bit, because few of the agencies have budgets other than continuing resolutions for this fiscal year. I think when a little more is known about that, the agencies will have a little better sense of where they might have some discretion.
We have heard from probably 80 percent of the agencies, including VA, and actually they are very supportive in terms of many of their recommendations that were put forward there. There are still concerns about privacy and there are concerns about moving forward too far without having a privacy protection/confidentiality protection framework in place. I think that is just going to be the nature of the whole area. Whenever we see recommendations relating to promoting and improving the health information infrastructure, there will be on the other side as well some concerns about how do you insure privacy protection at the same time.
In terms of process, I think our data standards committee has agreed to serve as the place where any recommendations relating to these areas from the committee will be forthcoming. Obviously, there were no specific standards recommended in the PMRI report. There was more or less of a self-imposed deadline by the committee to begin sending in standards and perhaps some specific recommendations within about 18 months or so. Again, those will have to be reviewed very carefully on their own merits when they are developed.
The only other item I wanted to report on was a report and an activity from the population subcommittee a while back relating to information needs of the U.S. insular areas and trust territories. There were a number of recommendations that were developed as the result of a discussion and bringing in representatives from the islands and the territories. Lisa remembers this well.
When those recommendations were developed, we circulated those to the agencies and asked them to begin reporting on them. We have recirculated them again. Apparently some of the agencies have made a fair amount of progress on these. I think NCVHS for example has actually moved forward on a number of these, as has HRSA.
We have asked our working group on racial and ethnicity data of the Council to pull together a progress report on where things are. I think the Data Council co-chairs would then sand that progress report to the participants in the islands.
Let me stop there.
DR. LUMPKIN: Any questions?
DR. BLAIR: Jim, I don't know if we can do this yet, but in our Subcommittee on Standards and Security this afternoon, are we in a position where you or someone else might be able to give us just a little bit more detail in terms of the reactions to the report to the Secretary on PMRI standards, going down on the status of each of the recommendations and how they played out. Is that more than we are prepared to do today, or is that something that we can do?
DR. SCANLON: I think we would still want to see the rest of the agency reports and the agency feedback. There were clearly some agencies that were very supportive. They picked out the areas that they liked and would like to proceed on, and I think we need a more overall comprehensive report. So I don't think we can do that now, but we can probably do that at the next meeting.
DR. LUMPKIN: Paul?
DR. NEWACHECK: Jim, can you comment a little bit more on the new data initiatives that might be incorporated into the fiscal year 2002 budget?
DR. SCANLON: Well, let's see. I always have to be careful, because obviously, anything can happen with the budget this year. Anything can happen with anything this year.
Agencies were asked -- the Data Council has done this before, but we actually provided the agencies this year with a framework for thinking about this. Dan actually is my co-chair on this group. We have co-chairs as well for NCVHS and AHRQ. We have had a number of analyses and reports, cross-cutting reports, that focused on specific areas of need in the past -- how do you improve racial and ethnicity database, how do you assure that you have the data to monitor Healthy People, what kind of information do you need to monitor trends in the health system and so on.
The desire here was to pull all of these together into a multi-year data strategy, so that -- because many of the same mechanisms and vehicles would be used to address many of these. There was some guidance provided to the agencies and their preliminary budget planning that related to -- that mentioned these areas, asked them to look at where they stood and what they thought the most critical areas were to proceed, in terms of closing data gaps, but not simply collecting new data, also in terms of the whole infrastructure effort, how do you assure that you have Health and Human Services information systems for the future and for the next generation. This includes areas such as standards infrastructure and so on.
Then the third area was actually assuring that the data -- how do you assure that you actually get the information analyzed and disseminated to the customers, consumers and decision makers who need it.
Within those broad categories, we have had a number of -- virtually all of the agencies in HHS have looked at those areas within the context of their missions. Some of those missions, you are aware, are broad, general purpose missions for research or statistics for public health, and others are more specific to program administration.
In each of those areas, they have identified a fairly good number of enhancements in these three areas. I'm reluctant to talk specifically, because it is just not -- the budget process -- that was very preliminary budget planning, and anything could still happen in terms of where the ultimate budget process would go. But you would see there reflected many of the themes in terms of the most important data gaps.
I think some of the challenges remain. How do we assure Health and Human Services information on all the disadvantaged groups, all of the racial and ethnicity groups continues to be a challenge. It is not a simple matter of oversampling or adding these items to administrative data. It is much more complicated to have the data. What is the respective role with respect to state data, federal government vis-a-vis the states and local data? How do you assure that you have this kind of information?
Again, it is all in the framework of fairly limited resource -- opportunities for increased resources. So that the framework is one of a coordinating nature and trying to avoid any duplication, trying to reinforce and build off each agency's strengths, and to see where there are areas missing.
DR. LUMPKIN: It is good to hear this is being done in a coordinated fashion. It will be a good outcome, hopefully.
DR. SCANLON: I hope.
DR. FRAWLEY: Jim, with John not being here this morning, I was wondering if you were going to give an update on the P regulations, or whether Mary was going to. I think your remarks point out the fact that a lot of the committee's work will not be able to move forward until the whole issue in terms of privacy and confidentiality is addressed.
So I was just wondering if maybe you could give us an update on where the regs are at this point.
DR. SCANLON: Were you going to say anything about that, Mary?
DR. EMERSON: I can give very brief on the privacy.
DR. SCANLON: Mary can give a -- it will be very brief.
DR. EMERSON: This is Mary Emerson, and I will give a brief update on all of the regs, starting with privacy.
It is in the Department for clearance now. It is the highest priority right now. So the work on the other regs is taking a back seat to the work on privacy. There is still a hope to publish this reg before the end of this Administration.
On the unique provider identifier, that reg also is in the Department for clearance. The employer identifier, in the Department for clearance. The security reg has not yet begun for clearance. We want to be sure that we harmonize everything between that reg and the privacy regs, since there are a number of overlapping areas, so we are waiting until we feel all issues with the privacy regs are settled before putting the security reg in HIPAA clearance.
We have two other regs or really three other regs that have not yet been issued as proposed rules. The plan I.D. is almost ready to begin HCFA clearance. This would be a notice of proposed rulemaking and we are almost ready to begin HCFA clearance. It still needs to be presented to the health data standards committee before it would go for HCFA clearance, however.
The same is true for the attachments reg. It has been drafted and is almost ready for HCFA clearance, but needs to be presented to the health data standards committee first.
The remaining reg is the enforcement reg. That has not yet been drafted.
DR. LUMPKIN: Any questions?
DR. GAYLIN: If I could just add one thing on privacy that I don't think is saying anything wrong. I work for Gary Claxton, so I'm not a member of the privacy team, but I certainly know what they are up to.
The hope is that this will be published in the Federal Register next week. They are working essentially around the clock to try and make that happen.
DR. FRAWLEY: That is the privacy reg?
DR. GAYLIN: Yes.
DR. LUMPKIN: Any other questions for Mary?
DR. ZUBELDIA: Mary, what is the status on the electronic signatures?
DR. EMERSON: As you may know from other reports that were given to the subcommittee on standards and security, the electronic signature was separated from the security final rule, and is being considered separately. It was felt at the time that the security rule was being drafted that there was not really an industry consensus standard, so that will not be part of the security final rule.
As you know, we had hearings on electronic signature in the subcommittee about a month ago. I can't say anything more than that, really.
DR. LUMPKIN: Dan Gaylin is senior advisor for health policy research at ASPE. Are you going to give us an update on SCHIP?
DR. GAYLIN: Thanks.
DR. BLAIR: Can I ask just one last question? I think you said that there is the hope, the intent, that we would be able to publish the privacy final regs in the Federal Register, hopefully within a week or so? Is that before or after it might et approval from the Office of Management and Budget, like the other -- like the financial administrative transactions had to go through, or would that be the actual issuance of the reg? I'm just not clear on whether that is the final activity or not.
DR. GAYLIN: That is a good question. I think it is the final activity, but I'm not positive.
DR. EMERSON: It would not be published in the Federal Register until it has the approval of the Office of Management and Budget.
DR. GAYLIN: It is a pleasure to be here today. I am going to give a brief update on the status of the DHHS evaluation of the state children's health insurance program. What I have to put forward as a caveat before I get started is that we are pre-award phase in terms of the evaluation. The draft statement of work was issued back in August. We received public comment on that statement of work, reissued the statement of work as a formal RFP in September, received proposals from offers in the early part of this month. They were due on the eighth, and we are in the process of driving towards making an award, which we hope to do before the end of the year, in the calendar year.
But because of that, I can only talk about it in terms of the plan as outlined for the RFP, for the evaluation within that RFP. I'll be happy to take any questions when I'm finished, but recognize that there will be certain things that will be unanswered, since we don't even know who our contractor is yet.
With that caveat, let me just start off with a little bit of background on the SCHIP program. This is probably stuff that everyone in the room knows, so I'll go through it pretty quickly. SCHIP, the state children's health insurance program, was created as Title 21 of the Social Security Act through BBA 1997. It provides funds to states to expand insurance to low income children. These are children less than 19 years of age and less than 200 percent of the federal poverty line.
It is definitely considered among the most significant children's health insurance expansion since the creation of Medicaid. We are careful always to call it the state children's health insurance program, not only because Congress has told us to, but also because it is a state program, which was the motivation for that. States have a great deal of flexibility in the design of the program and how it is implemented, who they target, what the benefits are, how they work within those broad parameters of low income children.
As of July, which is the most recent data we are working with, all 50 states and six territories have programs, and over two million children are covered.
The subject that I am talking to you about today is the first large-scale DHHS evaluation of the SCHIP program that will entail primary data collection. HCFA has an ongoing set of research activities that include evaluation work and mandated reports to Congress, so there are definitely other efforts going on, not only in the health services research sector and not only by the states themselves, but also by this Department. But this was definitely intended by Congress to be a somewhat larger scale effort and to involve primary data collection.
The purpose of the evaluation is very straightforward. It is exactly what you imagine, to help Congress and the Department and states take stock of how the program has been doing in its first few years, and where we might need to do some course corrections and provide general guidance on policy direction in children's health insurance.
The specific language of the Congressional authorization that created the evaluation is there before you. They told us it would be a 10 state evaluation, that the states would represent a diverse mix of states in terms of geographic region, the populations covered, their approach to SCHIP design, and essentially all of the different variabilities that represent the range of SCHIP programs in the U.S.
Again, they made it clear that they wanted surveys of the target population. This population has been surveyed at the state level, but a national level survey of the SCHIP population has not really been done in any significant way.
What you will notice is that this second bullet, surveys of the target population, report to Congress, December 31, 2001, both of which are language in the statute, are fundamentally incompatible directions, because as we all know, there is this thing in the Department called OMB clearance associated with any large scale primary data collection, and the OMB clearance process takes on average 150 days to complete. Given that we got this money essentially at the start of the year 2000, calendar 2000, our ability to design, field, analyze and report on surveys, particularly with OMB clearance in there, by December 31, 2001 is just simply an impossibility.
So what we did was have a discussion with Hill staff, who created the legislation and made it clear to them that there would be a report to Congress in 2001, that we would design an evaluation to produce a lot of useful information by 2001, but that we would also be doing surveys with this evaluation as directed by the statute. There would be followup reports o additional components of the evaluation, once the surveys had been fielded, the data had been collected and analyzed, and we were ready to report on that. They were fine with that, although it was the usual disconnect between researchers and policies that occurred. There was a little bit of a back and forth education that went on in that meeting, in which they explained to us why it was so important that they have information quickly, and we explained to them why it was scientifically very important to take our time, at least with regard to the survey research.
I'm not going to read through all of these main evaluation questions, other than to put them up here so you can see them. There is basically eight main areas. Those are evaluation questions, the area of program design features, exactly what you would expect, different benefits design and eligibility levels, and everything that goes along with that, and how benefit design affects enrollment and enrollee satisfaction in the experience of enrollees.
Impact on the uninsured; this is a fairly straightforward set of questions. We have a program that was designed to increase insurance coverage among children. Is it doing that, is essentially the question there. Enrollment trends, what is happening in terms of enrollment, disenrollment, terminations, re-terminations, denials, that sort of thing.
Some of the state programs do have cost sharing and premiums. While it is not a major part of any state program, it does exist and it is certainly an important thing to understand, and it has been very little explored to date, what the impact of cost sharing is on participation and that sort of thing.
Barriers to enrollment is of course the topic that most people are focused on in particular with this program. The enrollment at two million plus is certainly substantial, and we can all feel good about that, but it is certainly not anywhere near what it could be. The question that is being asked both by policy makers, by health care providers and by the health care community generally and the health services research community is, why is that, why does the enrolment seem to be going as slowly as it is. So we have a whole battery of questions on barriers to enrollment. Access and utilization. These are standard sets of questions around what is the experience of enrollees in the SCHIP program, what sorts of services do they use, how is that experience different from enrollees in similar programs or with private insurance or without insurance, and what kind of satisfaction do enrollees and particularly their families, since enrollees are children, report with the program. Then of course, some looking at the infrastructure that the different plans who are providing SCHIP services, what that infrastructure is like and how it affects the experience of enrollees.
Given barriers to enrollment, states have been doing a lot around outreach and education and effects -- this is as much a barrier to enrollment as outreach, but effects to streamline enrollment processes. So we want to explore what the result of those strategies has been to date, and try and get some sense of what tends to work and what doesn't.
The last area is a critically important one. This is an evaluation of the state children's health insurance program, but clearly what we really have is a complex of interactions between Medicaid, SCHIP, employee sponsored insurance, other private insurance in the individual market, and uninsurance. The question is, how do all of these programs or lack thereof interact, and what kind of movement among the different statuses, insurance statuses, as implied by these programs, do we see among this population. So one of the more fundamental parts of the evaluation, that was very clear that Congress' intent was for us not to look with tunnel vision at SCHIP per se, but at the whole host of programs.
I'll tell you a little bit about what the research activities are that we will use to explore those questions. As I have said, there are going to be surveys of new enrollees. Those will be enrollees who have been in the program for five months or less, and established enrollees, more than five months, and people who have disenrolled from the program.
Right now, our anticipated sample size is somewhere between 18,000 and 24,000 total responses. That is across the 10 states. While we don't necessarily -- I don't mean to imply that it will be an even number per state obviously, the division is simply enough, you can think of that as 1800 to 2400 per state. We do expect that it will be a stratified sample with some oversampling of policy relevant subgroups.
We have also put forward an expansion of the state and local area integrated telephone survey that the National Center for Health Statistics is doing with $10 million from HRSA. The purpose of the SLAITS model that is being done is to explore issues around children with special health care needs.
What is interesting about that survey is that the sample frame used to go after that population and identify them, in order to identify that sample, NCHS and their contractor would have to essentially go through many relevant children for this analysis, low income children, uninsured children, children who are not enrolled in the SCHIP program. They would identify them, and then potentially not interview them, because in an oversimplified way we could call the discarded sample and say, no, let's field a battery of questions to the relevant population for this SCHIP evaluation.
So what I am trying to say here is that this is a very efficient way for us to piggyback on an existing data collection vehicle and get a whole bunch of information on knowledge of SCHIP, reasons for not enrolling if they are aware of the program, awareness of the program, that sort of thing, among families who have children who are eligible but not enrolled in SCHIP.
What we are able to do is feed back on it in such a way that we will get a total of 11,000 respondents from across all of the 50 states. So it is a big sample at the state level; it is not all that big a sample, 200-plus, per state, but it was great that we could do it, because it was like jumping into a moving car. By the time we were moving with all four cylinders firing on the evaluation plan, SLAITS was just about to go into the field.
So thanks to HRSA and NCHS and the NCHS contractor, we were able to make this happen, and it is going to be a very important part of the evaluation.
We are also doing case studies in all 10 states. Nearly 30 respondents for these case studies. These case studies are focusing on the people who participate in the program as professionals. So program representatives, government officials, the official groups representing enrollees and policy groups, provider groups, providers themselves, employers, health plans.
We will also be doing a small survey across all 50 states. It will be a brief survey, but the idea is to get something from every state. We will be doing individual case study reports and also a synthesis report that cuts across all of the case studies.
There will be a lot of secondary data analysis. We will be using state SCHIP and Medicaid data systems, not only to construct our sample frame for the surveys, but also to provide fundamental programmatic information. There is the MSIS system that we will be using, and of course there are a variety of other public data sets that inform this topic, particularly the health insurance coverage question.
In addition to the case studies, we will be doing focus groups of families of enrollees and dis-enrollees that will include SCHIP enrollees and dis-enrollees, it will include low income children with employer sponsored insurance, and it will include low income children who are eligible, but not enrolled.
We will be doing a lot of these. We are going to do 40 focus groups in total, with eight to 10 participants in each of the focus groups.
We are also constructing a programmatic database that contains basic descriptive information and information abstracted from policy and program documents from each of the states, and that database is being set up in a way that can not only inform policy making, but it can be used to develop analytic fields for research.
Then we have held in reserve a portion of our funding to do focus studies in areas that are of particular interest, so that we can target them as the needs and issues arise, as we see what happens with some of these larger components.
So those are the questions and the components.
This next slide is -- what I have going down on the sides are the main evaluation topic areas, and going across the top are the research components that I just went through. What the solid dot indicates is that that is a primary strategy for exploring that question, and what the open dots indicate is that it is a secondary strategy.
The main point I want to make with this slide is simply that what you can see is that in each topic area, we have at least one primary strategy, one robust effort to try and address those questions, and at least one and in some cases several secondary strategies will help us inform and add richness to our understanding from what we will obtain with the primary strategy.
This is a pretty challenging evaluation. It is very large in scope. There are a lot of issues. There are a lot of evaluation questions. We have got many, many moving parts. We have got a short time frame to work with. We have got a population
that has never been surveyed in any substantial way. We have a sample frame that needs to be constructed from state administrative data systems which are going to be complex and very different from state to state. Those are all real challenges.
What this slide attempts to show you -- and it as much highlights as anything else, because there is a lot of detail behind all of this -- is that we have endeavored to get an evaluation design that contains enough redundancy and layers of activity that these challenges can be met, and that we will produce a successful evaluation within the time that we have to work.
So just to go through some of these briefly, some of the main challenges. We have highly variable programs; how do we get this data generalized, how do we identify which of the 50 states are going to be the 10 states that we do in the evaluation, and how do we recruit those states and get them on board, since this is not going to be a simple thing for the states.
Again, we have a broad range of data collection strategies. We are going to do purposive state selection, as directed by Congress, to try and capture not only a range of variability, but also capture the lion's share of SCHIP enrollees, or something close to it.
We have also put in place with the help of HCFA a contract modification to their ongoing evaluation efforts with mathematical and policy research to develop advanced intelligence on the status and the capabilities of state administrative data systems so that, when we do have our award in place, we will be armed in advance with some information about what we can expect to get out of those data systems.
We are also providing incentive payments to states. We can't promise them that we will reimburse them for their costs, because we don't have infinite funds. But we have created funding of up to $50,000 per state to defray some of the expenses associated with participating in the evaluation.
Comparison groups are always a challenge in any federal evaluation. This one is no exception. I think hopefully what you have seen from the different research components that I went through is that we have a variety of different data resources. We have qualitative and quantitative research techniques. We do have an option to fund a Medicaid sample so we can do a better job with Medicaid comparisons, which we may or may not fund, depending upon availability of funds. There is retrospective data collection to allow us to look at a particular enrollee's experience as they track through different insurance states, and there will be quite a bit of capacity through subgroup, state and regional comparisons.
In terms of this being a very young program, this is only the first few years. This is the first major evaluation effort of this type of this program. It would be inappropriate to focus on the ultimate outcomes that one might expect to achieve from a program such as this, which is clearly improvement in health status, outcomes and quality of life.
Those are all important things to understand over the long term, but three years into the program, it was decided -- actually, I forgot to mention something. Back in February, we had a design conference, in which we invited essentially all of the stakeholders from inside the Department, throughout government, the health services research community, the policy community, and the health care community. We hashed through a lot of these issues, and one of the many recommendations that came out of that retreat back in February was, let's not focus on those long term outcomes, focus on the shorter term outcomes that you can expect to try to measure and track in the first three years of the program, which are again some of the things I went through in the evaluation questions.
The other thing that should be clear from what I said earlier is that there is a whole lot of stuff going on in examining this program and this patient population. It is very important that this information not be put forward piecemeal, but that we make a really good effort to try and get our arms around it and present it in a synthesized and integrated fashion. In fact, there are specific tasks in our contracts designed -- changing our contractor, working with us, ASPE and the rest of the Department, to try and pull together some of that research, so that when we develop our reports to Congress, it is not simply, this is what the DHHS evaluation in 1989 created, but this is the state of our knowledge on the SCHIP program and its interactions with Medicaid and ESI as of December 31, 2001 and December 31, 2003, which will be when the reports to Congress go.
So that applies to both integrating all of the different pieces of this evaluation, most of which are being done through a single contract, but several are being done through several contracts.
Going back to this slide, you see the break in the evaluation components. The surveys, state case studies and secondary data analysis, as well as this integrative function that I am describing, will all be done under one large contract, which represents about 80 percent of our total funding. The focus groups, the development of the program database, the fielding of the SLAITS survey and the special studies will all be done through several other smaller contract vehicles that we are creating, although the analysis of this SLAITS survey data will also be done by this main contractor. So that is why there is this break in the middle of this table.
The point is that the larger evaluation contract, which is the first three items, also has in it a component that is designed to wrap around all of the evaluation components and also integrate in research being done elsewhere in the Department by the states and by other health services researchers.
I think there is just one last slide, which is the time line, which somehow I have lost; let me pull it back up, quickly. I'll close here. In encounter 2000, as I said, we are really hopeful that we will make contract awards in December or if not, very shortly thereafter. 2001 is going to obviously be a busy year. We will have the state selection done by February. We hope to have the states recruited and on board by May. The focus groups will be taking place from March through June. We will have six of our 10 case studies completed by July. We will have our first analysis of program and secondary data analysis done in the fall. The SLAITS data will become available in September, and we hope to have them analyzed by November, and have that evaluation report completed by December. That is 2001.
In 2002, the survey fielding will begin. We will be finishing the remaining four case studies and developing the cross-cutting case study report. We will be doing additional analyses of the SLAITS and program data and developing deliverables on that.
In 2003, the survey fielding will end. We will do data analysis through the summer and then work on a cross-cutting report that pulls everything together that we will delivery to Congress by December.
The only point to be made, which is an important one, is that we also have in the contract routine ongoing dissemination activities. So even though there are these major reports that will be being created, to the greatest extent possible, we intend to have -- it is an exaggeration to say real time or continuous, but that is the goal. We want to get as close to real time and continuous release of results that are ready to be released as we can, not only because we think the community needs and deserves that, but because Congress has made it very clear that that is what they want us to do.
So there is a major task in the larger evaluation contract designed around a whole variety, and the full spectrum of dissemination activities.
The last thing that I want to close with is, these are all approximate dates. We don't have a contract award yet. Some of that gets negotiated with the contractor once you have an award, so this is certainly the plan, but it is all with a certain margin of error around it.
DR. LUMPKIN: Questions?
DR. NEWACHECK: Thank you, Dan, that was an excellent presentation. I wonder if you could tell us a little bit more about coordination activities. This new evaluation is obviously a huge one and an important one, but it is coming in the context of a myriad of existing research and evaluation activities funded by other federal agencies, by states, by foundations and the like. It seems like the potential for overlap and duplication is very high.
At the same time, it seems like there are really good opportunities here for synergies to develop. I'm wondering if you can tell us a little bit more about how ASPE plans to deal with that.
DR. GAYLIN: Sure. First of all, we plan to deal with it in one of the more traditional ASPE roles, which is to get some people around the table to convene some informal conferences, and get the range of stakeholders who are both consumers of this research and people doing this research talking. We do this, RWJ does this, and we intend to continue doing that, and in fact turn up the volume a little bit on those kind of activities.
There is also a formal task within the contract, in which the contractor -- and they have given us specific proposals on how they go about doing this, that I can't get into too many of the details on right now, but in which they propose a whole variety of activities that they will do to reach out to the other researchers who are doing this work, and to establish connections. In many cases, the relationships of course are already there, but to use those relationships to tie the research together. There is a fair amount of specificity in these proposals about how they go about doing that.
There are a couple of things which are important to note. HCFA's evaluation is mostly focused on secondary data analysis. That is basically what Mathematica is doing for them. They have recently added in a case study component, but one of the nice things is that when we worked out this piggyback on the HCFA contract so that we could do this advance intelligence work on the state data system capabilities, we worked out that they would do case studies in different states than we would.
So in terms of an issue for overlap, we are not doing case studies of the same states. What HCFA is doing is mostly secondary data analysis, and what we are doing -- although we are going to use a lot of secondary data analysis, is mostly primary data collection. So there is a lot of -- we at the outset tried to avoid some of the overlaps there.
The other thing is that we developed -- participating in our conference back in February and assisting us in some of the design were some of the state evaluators who are doing evaluations in some of the larger states, New York and Florida as two examples, so we have been coordinating with them as well.
DR. NEWACHECK: Can you also tell us how many applications you received for the main contract?
DR. GAYLIN: I can't tell you that.
DR. LUMPKIN: I actually have one question, Dan. As I was listening to your presentation and looking at the process that you are going through, and based upon completing this, you are going to learn some lessons about evaluating SCHIPS.
Now, there are states that will not be part of this survey. To what extent will one of the products of this process be a package that can then be handed to states who then want to do some more in-depth evaluation of their own individual SCHIP program?
DR. GAYLIN: That is definitely one of the goals. We have not made it a contract requirement, but certainly states -- we did present to HCFA's group of -- I forget exactly what they call it, but they have a regular meeting with the committee of SCHIP directors. We went and talked with them. One of the things that came out in that meeting is, gee, there are some questions that, if the surveys were designed in a certain way, if the question content was written in a certain way, it would be directly useful to us, and are we going to be able to have input in that process. Our answer was, absolutely.
Then the follow-on question was the one you just asked, and our answer was, we definitely want this to be as broadly useful as possible.
On the other hand, we can't turn it into an exercise of creating products for the states, because we do have a Congressional mandate around producing a scientifically valid evaluation covering the evaluation questions that Congress laid out for us, and that were expanded upon.
So there is going to be a little bit of a compromise there. We want this to be as broadly useful to the states as possible. We think that it will be. We think there are ways we can design it that will facilitate and help insure that outcome, but we can't make that the prime objective.
DR. LUMPKIN: Barbara?
DR. STARFIELD: I think this is a terrific evaluation. Congratulations on what you have done.
The legislation as I understand it has focused on the target groups, but you are going beyond that. Is the primary mechanism for doing that the SLAITS? That is, you will get non-enrollees?
DR. GAYLIN: Yes and no. I think we tried to go beyond it in a number of ways. The SLAITS is certainly from a primacy data collection standpoint one of the most fundamental, but in the focus groups we will be doing Medicaid and ESI and eligible but not enrolled, and we also tend to explore some of those issues in the case studies.
The last thing is that we did include in the RFP an optional -- and I didn't mention it actually, I should have, this slide where I talk about comparison groups, optional Medicaid sample, in the second cluster of bullets on the right, third one down.
It is not clear whether or not we can fund this yet, but we would really like to if possible. We did have offers proposed to us, how in addition to the enrollees, dis-enrollees and -- the enrollee and dis-enrollee groups, how we would go about constructing a sample, a matched sample of Medicaid enrollees that can be used for comparisons.
Really, the issue is going to be cost. What I can tell you in all honesty is that we have been working real hard on our technical evaluation, which is almost done, but you complete the technical evaluation before you look at the business proposals. So I haven't even seen them yet.
DR. STARFIELD: The question is, how do you identify those who are eligible but not enrolled? If they are in Medicaid, they are basically enrolled in something.
DR. GAYLIN: Right.
DR. STARFIELD: Is the SLAITS survey targeted at low income areas?
DR. GAYLIN: Yes, the SLAITS survey works off the national immunization survey sample frame, which is a random digit dialing approach. So basically it blankets the states and will pick up -- we have screening questions at the beginning that identify the right people. It is imperfect. It is not going to have a lot of precision around it. There is certainly going to be some measurement error there.
DR. STARFIELD: But if you try to target the low income areas, random digit dialing won't do it, unless you pick the areas first.
DR. GAYLIN: I'm sorry?
DR. STARFIELD: You are going to get the biggest payoff if you identify the geographic areas with a high proportion of eligible kids.
DR. GAYLIN: Right, because this was piggyback and it is not our own implementation of the SLAITS we couldn't do that, which is why the numbers are low. I mean, 11,000 sounds great, but when you figure that it is 220 per state, that sounds considerably less great.
DR. MAYS: I guess I want to chime in too that it looks very exciting and very well thought out. To what extent will there be some potential for formal products that talk about the methodology and cost effectiveness of some of the methods that you are going to use?
One of the things that you do have some possibility for -- I don't know how it is actually going to play out -- is to reach people that sometimes we don't have in a lot of ongoing surveys. Particularly for some of the states, we will want to continue to do that. So I think that researchers and others would find it quite enlightening to figure out a little bit about your successes.
So are there going to be some of the methodological products from this?
DR. GAYLIN: Yes. Not saying anything to this group that the people don't already know, when you get some of the blue ribbon researchers who tend to do an evaluation this challenging and involved, they can't help but want to talk about all of the innovative methodologies that they have come up with to do something this challenging. Certainly our envisioning of the dissemination plan, which is a specific task -- unlike many evaluations, some that I have done, where there was no explicit budgeting for dissemination, and that all kind of gets figured out either as an add-on or the good will of the researchers, we literally had a significant portion of this set aside to create a whole set of products, from the very methodological and data nerdy on up to the high level informed Congressional health staff about what we have learned here, and everything in between.
DR. LUMPKIN: Thank you very much for a very enlightening presentation, and we will be looking for updates as you are going through this process. Obviously the committee has a lot of interest in this particular endeavor that you are engaged in. Thank you.
DR. GAYLIN: Thank you.
DR. LUMPKIN: At this point, we would like to invite Ed to give us an update and briefing on what is going on with the National Center for Health Statistics.
DR. SONDIK: I prepared slides, but I wonder if it might be better for me just to talk through things.
(Recording interrupted.)
-- update on things at NCHS. There are three items on the agenda for this point. One includes NCHS, which is why I thought I might not go through all these slides, because I don't think we'll have time.
It has actually been some time since I gave an overview of what is happening at NCHS. I think it would really be very useful to do that.
I wanted to close this with some of the challenges that I think lie in front of us. I think it was very appropriate to have Day Gaylin talk about SCHIP and the evaluation of it. You could see some of the overlap with NCHS and in particular the SLAITS activity.
Let me just run over the program structure of NCHS. I would divide it into these groups, although there are many different activities and different ways to present the organization. One is the vital statistics program. Two is our assessment of health status, and we do that in two principal ways. One is through the health interview survey, the other is through HANES, the health and nutrition examination survey. Then there is a family of surveys called the health care statistics survey or surveys, that include the hospital discharge survey and the ambulatory care surveys, hospice survey, then a number of other surveys, including longitudinal survey on aging, the national survey of family growth. We have a research and methodology function, and we have a small but I think very important set of extramural activities. By that, I mean activities that are supported by grant, could be contract, but in particular I think grant is very important, to supplement the work of the center, and to work on important issues as seen by the research community.
Let me say a word about budget. This shows the three major components of our budget. Let me draw your attention to the three lines that are on the bottom. One is the PHS-1 percent -- the upper line is the total. The green line is the PHS-1 percent evaluation funds, the next line below that is reimbursement/other, which means funds that we obtain from other agencies for work that we perform for or with -- I like to view it as with, in collaboration with other agencies. Then finally, the line that is on the bottom here for the year 2000 is direct appropriation.
The point I want to make in looking at this is that the mix of funding for NCHS has changed quite a bit over the last decade. In fact, we have gone from our major source of funding being a direct appropriation to that being the smallest amount of funding, approximately $33 million for the year 2000. PHS-1 percent evaluation funds have gone from essentially near zero back in 1988 up to $67 million in the year 2000.
Those two together give us a total -- what I would consider an appropriation of $105 million. On top of that, we received $40 million from other agencies and from other funds that were distributed by our parent agency, CDC, giving us a total budget of about $145 million.
You might ask how this has grown over time.
DR. FYFFE: Excuse me, Ed. Can you explain what the PHS-1 percent evaluation is?
DR. SONDIK: I'm sorry, I should have done that.
DR. FYFFE: Is that Public Health Service?
DR. SONDIK: PHS-1 percent funds are funds that are tapped from a subset but not all, a subset of agencies in the Public Health Service. So in other words, certain agencies are not included, for example, FDA is not included in that.
The agency with the largest budget is NIH in this. These are dollars that are tapped for the purpose of program evaluation. There are two agencies that draw from these funds. One of them is AHRQ, the Agency for Health Care Research and Quality, and the second one is NCHS, and by far we draw more than AHRQ does from this.
The rationale for this is that in fact, the information that we gather does help evaluate the programs of the Health and Human Services and for that matter, health status of the country. So those dollars shown in green here, the one marked evaluation funds, are in fact part of an appropriation to the Department, and they are derived from other points of the Department, put into a fund, used for those two agencies, but also used for all the other agencies which compete for these dollars, including ASPE which competes for these dollars, and uses it to evaluate their programs.
Let me talk a little bit about how this has grown. This graph shows the percent change, the total budget again, and that is measured on the left-hand axis, and the percent change, which you can see on the right axis.
Back in 1996, in fact, it was the year in which we lost money, but since that point in time in general, we have grown. So over the last several years, we have actually had an increase that is considerable. But at the same time, as in any agency, I think our resources are very, very tight. The challenge again exemplified by SCHIP and any number of programs, the challenges are considerable.
So I wanted to just give you a picture of what the budget looks like.
Let me run over briefly -- I guess I will use the slides, but I'll cover them quite quickly -- the major areas of the program. In vital statistics, I'll give you some of the highlights, particularly from this past year.
First in vital statistics, there has been great progress in the implementation of ICD-10, including work on training that takes place at our facility at Research Triangle Park in North Carolina, principally there.
I guess I didn't mention at the beginning, for those who may be new to NCHS, we are one of the agencies in the federal government designated as a federal statistics agency, which means that along with the Bureau of the Census, Bureau of Labor Statistics and several others, we are charged with taking an independent look at the areas under our purview and producing information that can be used to evaluate in this case health status, health care, in fact, all issues that relate to health.
We are located within the Centers for Disease Control and Prevention, and have been for about the last decade.
Let me say something about vital statistics. I started mentioning ICD-10, which is under its responsibility. ICD-10 is coming along I think very well. This year we introduced a new base for age adjustment. We have mentioned this I think a couple of times in the past, but now it has actually come to pass, and we are using the year 2000 as the base year for age adjusting, which I think is quite appropriate. It makes the crude rates for this year very, very close to the age adjusted rates.
We have produced research on trends in unwed births, in a very database report that came out this August, I think I have a slide on that, and the testing of new birth and death certificates that are going to be implemented in the year 2003 is also underway. This is just a slide from that report that shows birth rates for teenagers by age. In fact, the startling thing on this is how these birth rates have come down in the decade of the '90s. It really is a spectacular change. It is one of these changes in the fabric of life that is surprising, in the sense of how fast it has actually taken place.
Again in vital statistics, we have a variety of international activities. Our ACME program and other programs for coding are used throughout the world. We are very proud this year of a very early release of preliminary and final natality data.
We produced a CD this year on multiple birth data for years '95 to '97. We are studying the impact of the Census' collection of multiple race data. I mentioned the national survey on family growth, which is projected to begin in the year 2002, and for the first time will include a sample of men in the survey, which I think is very significant.
One of our two major components for assessing health status is the health interview survey. I think most of you are familiar with that. It goes to over 40,000 households each year. It is in the field at all times, 100,000 interviews every year. I see it as our key tool in health status assessment.
I am going to say a bit when we are through with the slides about the meeting that was held in Ottawa, but it very much relates to HIS and its in-person assessment of health status. I will also say a word about the HHS summary measures group. You have heard something about SLAITS, and I'll come to that in a second.
I want to say something about HIS and its use of supplements. There is a core to HIS. Each year, we add one or more supplements to that core. These supplements are critical to a variety of things in the Department, as you will see when I run through this. In fact, you can see on this slide that they have been critical in evaluating progress for Healthy People, in evaluating progress over the last decade in meeting the 2000 objectives.
In 1999, the supplement looked at chronic conditions, mental health, health care access and satisfaction with health care. In 2000, we are in the field now, it is looking specifically at cancer control in a supplement that is sponsored by the National Cancer Institute and the CDC.
Since I know you are all copying this down as I run along, I'll be happy to let you have the slides or make them available.
So HIS has been -- it seems to me SLAITS is not in the right place, so it is going to pop up here in the wrong place, so when it does, I'll speak to it.
The other major component of health status assessment is the HANES survey, the national health and nutrition examination survey. 1999 was its first year back in the field since 1984.
In some ways, it is very similar to what it was before. It is the primary clinical assessment -- I would call it clinical hands-on assessment of --
DR. LUMPKIN: Was that '84 or '94?
DR. SONDIK: Did I say '84? '94. Time flies. But that was a test. You were listening, thank you.
It is the primary clinical assessment of health status in the country. It gets information that includes blood draws, for the first time a test on physical fitness, dental exams, eye exams, check on osteoporosis. It is a variety of very important measures.
But at the same time, it has changed considerably. It has changed considerably in that instead of doing a representative sample of the U.S. every three years, it now does a representative sample of the U.S. every year. It still is 5,000 subjects each year, but we have modified it in particular so that we can use the diet component of it to meet the needs of the USDA and its constituencies.
They have conducted their own survey for many years, but have decided to drop that. We have joined forces in the support of the diet component of the HANES survey. To do that, we needed to change our design somewhat, I think for the better. The major change in that was to draw a representative sample of the U.S. every year.
I wrote logistics on this slide, because at some point it would be very interesting for you to see a tape we have of bringing the HANES trailers. HANES is conducted through a set of four trailer trucks that are interconnected to make a mobile laboratory and exam center. We have three sets of these in the country at any point in time, two set up and one travelling.
The one that we had set up in New York recently turns out not to have been able to make a turn in the road, and it was necessary for us to actually ferry these in using the East River and cranes and set them up in a parking lot near the UN. It actually makes a very interesting tape. So I think that was a high point in the logistical aspects of HANES. But it exemplifies the amount of detail and work that goes into putting this program together.
Some of you may have heard me and others talk about DP HANES, which stands for defined population HANES. The idea is to take HANES and its methods, but package it in a smaller set of trailers, in fact, one trailer, that is able to go where those sets of four cannot go and go at particular times of year where the four trailer trucks cannot go, like the far north in the middle of the winter, for example.
We have actually now -- we are moving forward with this, and have purchased our first two -- well, they were supposed to be vans, they turned out to be trailer trucks, and we thought that those would accommodate more than the vans that we originally started to use. So I am pleased to say that we are moving forward with that aspect of the HANES program.
One thing I didn't mention was the data release. Data for '99 was actually released just about six months after the end of the year. This is the major change in HANES. We have gone from something that was using really antediluvian types of information processing, probably the state of the art in the '80s, to something that is the state of the art in this new decade.
Nothing is written down in the center. Everything is coded automatically, taken off of wrist codes that the persons wear as they go through HANES, go through the various tests in the mobile exam center, and then communicated to Rockville and Hyattsville. Because of this, we have been able to go from a release time of around three years to something on the order of six months, which is really a tremendous accomplishment. The staff of the program and our contractor, Westet, really need to be congratulated on what they have done here. It really is a major, major achievement.
This just shows for the health interview survey the supplements, and how they are going to be used in this decade, again focusing on Healthy People, on children's mental health, at least those two.
A problem we have, issue we have with the health interview survey is that there are so many demands for it that we almost need to double it and add another health interview survey in order to be able to take care of all of the needs for it. But of course, at this point we do not have the resources to do that.
There will be some significant changes in this. We are going to change the basic software that has been used in its CADI programs. There is going to be some re-engineering of data processing, like expanding the amount of analysis that takes place as part of HIS.
Now, SLAITS comes under HIS, even though it doesn't directly use the health interview survey. That is because the information that we expect will be collected by SLAITS relates principally to the health interview survey.
I am pleased to say here that SLAITS -- I'm not sure whether Dan explained it in any detail, but it is a telephone interview survey that is built on the national immunization survey, which means that we are able to go to 78 separate, mutually exclusive and exhaustive areas of the country and get information on much more detail than we could with a typical national survey that we performed.
We have completed a study on the pediatric and home care experience as part of the SCHIP evaluation, but particularly that is going to be an offshoot of work that we are doing with HRSA maternal and child health bureau to estimate the state level estimates of the needs for children with special health care needs. This is I think a very significant use of SLAITS and we'll see what we get. From what I understand, it is going quite well, and shows just how important this type of mechanism is.
The national health care surveys, to change topic, cover information on health care utilization. It covers hospitals, emergency and out-patient departments, ambulatory and surgery settings, office-based physician practices, nursing homes, home health and hospice agencies. All of these through a family of separate surveys.
We think it is really critical that we evaluate these surveys to be sure that they are keeping up with the changes in health care that are taking place, the changes in the health care delivery, the changes in the financial arrangements, and we are reviewing the content and practices of all of these to set short and long term approaches, priorities for this.
We are approaching this in two ways. First is, we want to fill the gaps. We have not been able to mount the -- because of resource constraints, mount the ambulatory surgery survey, and we are going to be doing that in the near future. We want to pursue an alternative medicine survey and have been working with NIH on that possibility, and we would like to increase the range of care settings that we go to.
It is also important -- I feel particularly strongly about this -- that we better capture, more effectively capture system dynamics, in other words, how people actually progress through the health care system. There are ways of doing this, both forward and backward. By taking a particular group of patients and following them back, and follow back surveys to look at the outcomes of care, or we can do it in a forward way, which is very resource intensive, but I think could be very, very valuable.
We also need to characterize health care providers and their interrelationships, particularly the interrelationships in financing of health care, insurance relationships and their relationships in terms of privileges in one hospital or another. All of these clearly affect how the health care system is working.
So we are doing a variety of things towards this, including a number of expert groups that have been meeting. In 2001 we are going to be testing short versus longer forms with expanded content in the ambulatory care surveys.
There has been some question about whether our response rate will fall off if we ask more questions. We are going to test that and check that out.
We have asked for working papers to be developed and ways of tracking episodes of illness to get at the dynamics that I was mentioning. The hospital discharge survey is going to be adding information on the type and source of admission data. We are also going to be gathering data from the VA and the Department of Defense as part of the hospital discharge survey, and linking to data from the American Hospital Association through our data center to reserve confidentiality.
Let me mention a variety of other activities. One of the things that we participate in are two forums in which we work with the other statistical agencies on developing a profile of information that goes beyond health.
I think this is extremely important. We do this for children in a report called America's Children: Key National Indicators of Well-Being, which now I think is about to enter its -- I think we are in year five of that. This year, we produced a new report called Older Americans 2000. That came from the interagency forum on aging related statistics.
I think this is really important. The reason that I feel so strongly about it is that if we want to solve any of the issues an problems that we have related to health, it is clear that we need information that goes beyond health. That is what these reports do. They give information on housing from HUD, they give information on work, labor statistics from the Bureau of Labor Statistics. For the kids, we get information on education from the Department of Education -- all from the official government statistical agencies.
These reports are really chart books, and provide a set of measures that can be compared year after year after year that would enable us to get a handle on progress in dealing with the issues that affect children, whether it is poverty or housing and its relationship to health or in terms of older Americans; it is the same type of thing, insurance, housing and health are principal issues there.
So I am very pleased that we are involved in this. I see it as a stimulus to collecting a broader set of information to deal with the health problems in the U.S.
Health United States, the principal document that we produce every year. Had a chart book this year which focused on adolescent health. For 2001 it is going to be on urban and rural health. I am pleased to say that under sponsorship of the American Public Health Association and many other agencies, for the second year we had a briefing from Congressional staff on health U.S., in which we emphasized some of the results, particularly related this year to adolescent health.
We also emphasized the wealth of resources that are available to Congress and to others for help in their policy analysis and decision making. We had a very good attendance this year, and I thank Mohamed Achtar for his principal sponsorship of this.
Another activity is in Healthy People. This year our staff produced a truly monumental document which I could not bring in today because it is too heavy. But it is about three inches, a thousand pages, and it is called Tracking Healthy People 2010. It is a detailed skeletal analysis of each of the objectives, the data that go into it, the standards for it, and I think sometime today we should circulate a copy here so that you can see it. I think it really is quite an achievement.
Other activities. Our research data center is going quite well. This is our effort to be able to use data that we could not directly release because of issues of privacy and confidentiality. This research data center enables us to evaluate and use this data within the confines of the center. It enables also researchers from around the country to be able to use it either electronically or to actually come in to the center and use it directly.
This summer we had a conference on -- our data users conference. We had 1300 participants, and it was more than we had expected for that conference, and I think it was very successful. We invite you to next year's conference, the national conference on health statistics, which is in July, the 22nd to the 25th. I wanted to write down here HIPAA, because NCHS is very involved in carrying out the implementation of the HIPAA provisions and some of the staff who assist you here are very much involved as well as in that activity. I think you are very much aware of that.
Let me mention that we have a new director coming for the Office of Research and Methodology. Larry Cox from EPA will be joining us in early January. I am very pleased that position has been open for some time.
At the same time, I am sorry to tell you that Reynard Pinckton who was heading our HANES program, has moved to the NIH as the Associate Director for Research on Behavioral and Social Sciences, and we are going to be conducting a search for that position.
Very briefly, challenges include recruitment, retirements and recruitment. We have a number of retirements that are coming up, and there will be a considerable effort in recruitment.
Research. I think it is very important that research, particularly research in the extramural community, be supported. I think it is important, especially as we find ways to evaluate the health care system and its impact on health status.
Privacy and confidentiality is something that is going to be affecting all of the statistical agencies. I don't think we have reached the peak of this as an issue. It is going to be a challenge for all of us, particularly in pointing out how important this information is to the public and encouraging them to participate. As I mentioned before, resources are tight to carry out this program, this challenging program.
Let me mention the other topics. I'll combine these two together because they very much relate together. At the last meeting of our interagency group on summary measures, we focused on the report that was produced by the World Health Organization in June. The report examines the performance of the health care systems of the 191 member nations of the United Nations, and I think breaks significant new ground in putting a wealth of information together in one place with a focus on performance.
In breaking this new ground, there are lots of issues and questions raised on data sources, on specific methods that are used, and it is a topic that I hope our committee on summary measures will be focusing on, at least in part over the next year.
Related to that, there was a meeting held in Ottawa under the auspices of the EEC, which is the European Economic Commission for short, and the World Health Organization.
The meeting was originally to focus on summary measures of health and health status assessment, but it turns out that the WHO was proposing a three-part resolution, or was proposing to propose, I guess would be a better way of putting it, a three-part resolution.
In working with members of the steering committee -- and I served on the steering committee, Michael Wolfson of Stat Canada chaired it -- we felt it would be a good idea if the meeting, instead of looking at health status in general, focused on this three-part resolution.
You have a copy in front of you of this three-part resolution, and let me summarize it very briefly. The first part of it was to -- again, this was in draft, so we don't know whether this is the resolution that will actually go to the World Health Organization. The first part of it was to endorse the ICIDH-2, the international classification of disability and health, which had been developed over the last decade. Marjorie Greenberg in fact headed the North American contingent that was involved in this, and very much involved in the development and evaluation of this over this decade.
The second component of the resolution -- the reason for this first part, I should say, was to provide a framework for the second two parts of this. ICIDH-2 presents a classification tool, a very valuable classification tool for health status. This was very important to the second part. The second part had to do with an endorsement of collection of information on health status, using a common instrument across all countries.
I say common; it is probably more apt to call it a family of instruments, but it would have the same basic structure across all countries.
You have a second piece of paper in front of you called Annex 2, that lists the general domains that would be included in this health status assessment instrument. To make this more concrete, this would be in effect for the United States a combination of the health interview survey and HANES combined.
The health domains include here a total of 21, including vision, hearing, speech, digestion, bodily excretion, fertility, sexual activity, skin and disfigurement, breathing, pain, affect, sleep, energy and vitality, cognition, communication, mobility, dexterity, self care, the usual activities, interpersonal relations and social functioning. In effect, this becomes the definition of health status, if you will, at least the fundamental skeleton of health status as outlined in the second recommendation.
The third recommendation part of the resolution was to endorse summary measures of population health. In effect, each country should be working to develop a summary, one or more, but in general a summary measure of population health that can be compared across countries.
There was extensive discussion of this in Ottawa, particularly issues that have to do with being able to compare health status across countries, particularly from surveys that are based on self report and the difficulties which are actually well known. For example, if one asks questions in Northern Europe, as to how healthy do you feel, you get different answers when you ask the same questions in Southern Europe from countries that are essentially at the same economic level. Part of this difference clearly has to do with simply different postures toward assessing one's own health status in the environment in which you live. You could summarize it, I suppose, that some countries are more optimistic and some are less optimistic.
There were some very interesting graphs shown by the World Health Organization that are really startling as to how different these assessments can be. So in order to achieve these resolutions if passed, it would require a considerable amount of research and analysis which I believe the World Health Organization is committed to.
There were a number of concerns raised about this, including this question of comparing across countries and the ability to do that. Other questions raised about whether a listing of health domains here contained enough information to assess health status.
For example, what isn't included here, but is alluded to in the third part, but not directly, for example, the percentage of the population that is smoking, using alcohol. That is not included here in this set of domains.
There was a set of summary comments that were produced at the end of the conference which were not official in any sense, but were a general assessment that were being sent to the WHO group led by Chris Murray, who were very much involved with the resolution.
I expect that -- I don't know what the fate of this resolution is going to be, but I came away from the meeting resolved to do more in terms of international assessment of health status, particularly comparing the U.S. with our nearest neighbors and with countries in Europe. We have pledged to see how we can modify the health interview survey to be able to do the research that is necessary in order for us to be able to develop a set of questions that can be compared clearly, carefully, analytically, rigorously, between these various countries.
I think it is very important for us to do, but not only to assess health status, but also to gather information on operations of the health care system, because I think without that, we lose a considerable amount of information in trying to explain these inevitable differences in health status that we are going to see.
With that, I'd be happy to take any questions.
DR. LUMPKIN: Thank you. Barbara?
DR. STARFIELD: I have two questions. Number one is a simple one. How do you manage to do what you do on $145 million a year? I can't figure it out. It is really impressive.
The second one has to do with this last part of your presentation, and it is the summary measures of health. One can see the appeal of the DALI's and the DAL's, because you use single measure. Life expectancy is a single measure, and disability adjustment, if you base it on a report of disability. So self report is one measure. It is very easy to get a summary measure.
All the other things you're talking about, the Ottawa work, depend upon the ICD and the disability classification, neither of which are useful for a focus measure. They are useful to get at diseases and conditions and they are useful to get at various aspects of disability, except for the work that we have been doing at Hopkins with the morbidity burden based on ICD. There is really no effort to put the ICD or the ICIDH into a single measure of health conditions or disability. I don't really see how you can come up with a summary measure unless you do that.
Do you see any movement in that direction?
DR. SONDIK: What I am hoping is that the interagency committee that we have will develop the kind of research agenda that we need. In fact, I would encourage you and others to meet with the committee to help outline what you consider to be the critical agenda for the Department in this.
It is very important that the Department approach this as a Department. This committee -- and we have mentioned this here before, started because of interest at CDC, at NIH, to some degree in HRSA. But our activities were not coordinated in any way. There was no real goal.
I think the contribution of the report from WHO is one of saying, it is a challenge, here is an approach to doing this. Now I think we need to rise to that challenge and say what are the issues with it. If we are going to develop measures that give us a picture of health in this country, let alone summary measures, but appropriate measures that enable us to get a picture of health in this country, a comprehensive one, but still one that is able to look at the different population groups within the country, how do we think it should be done.
I think that is something that involves the Department, but it involves the research community in general. I think we need an agenda for that within the Department. It has not been something that has been at a high level of interest in any of the agencies, but I think should be. It should be, because I think these types of measures are useful in getting a picture and leading toward policy. But it is critical.
I personally feel that a single measure, uni-dimensional measure in and of itself, tells us hardly anything. What is critical is something that can be divided immediately into a vector of critical components, and then the comparison of those critical components made to understand the differences between areas.
But it is important to understand how health care in Prince Georges County here or health status in Prince Georges County differs from health status in Montgomery County. That is important. But at this point, our methods for doing that are really crude. So I think the challenge is there.
The first part of your question is that all of us have VISA and MasterCards, maxed out.
DR. LUMPKIN: Paul?
DR. NEWACHECK: I wanted to ask you a followup question on the budget. First, I will just add that I am impressed too with what NCHS does with its money.
It looked like from your slide though that most of the increase that has taken place in the last few years has been from the Public Health Service one percent set-aside, at least, not all, but most of it. Is that upward trend likely to continue? Is it automatically one percent of those budgets that goes into your pot, or is it something that is adjusted annually? Because it looked like it was a fairly steep increase in the last four years after being relatively flat for a number of years.
That was one question. The other one is, a couple of meetings ago, you presented a proposal or a plan for creating an advisory board for NCHS. I think it was the scientific counsellors advisory board. Can you tell us a little bit about where that stands now, and what the current status of the plan is?
DR. SONDIK: The one percent refers to the maximum tap that is allowed by law. The figure is not automatic by any means. It is not as if NCHS or AHRQ get a fixed percentage of this pot, by any means. It is set each year.
There are a variety of ways to look at it. One is, as I said, you can view it as part of the appropriation, and because we and AHRQ to some degree relate to all the agencies, this is an appropriate thing to do.
It is true though that our direct appropriation over the last several years has actually gone down, not even stayed level, but it has gone down a bit. But together they have increased. Over the last three years, they increased a total of about 30 percent, which is very important, and goes at least a significant part of the way toward paying the very high investments that we have in programs like HANES.
What was the other part?
DR. NEWACHECK: About the Board of Scientific Counsellors.
DR. SONDIK: The Board of Scientific Counsellors is actually coming along. Linda Blankenbaker is the key person in NCHS who is working on that. She has been working with the committee authorities within the CDC. It is proceeding I think pretty much on track. So I am hoping that you will hear something really significant about this by the next time you meet.
DR. LUMPKIN: I have two quick questions. The first is, we will have a presentation in our next meeting on NEDS process going on in CDC. Is NCHS part of that process?
DR. SONDIK: We certainly are part of that process. NEDS is really focusing on Center surveillance measures. The implications of that though for vital statistics I think are very important.
I recently met with Clare Breum and others who are the prime movers in that about how we can be even more involved than we currently are, particularly the implications for NCHS.
I am very much struck by NEDS and its underlying philosophy, which is using the Internet as a way of communicating information, and in particular keeping the major -- at least, this is how I see it -- what it does is, it really establishes the database of this information not in Atlanta, but in each of the states, but does it in a way in which the communication across the states and with Atlanta is tremendously facilitated.
If you look at a diagram of this you immediately say, isn't that vital statistics. I think that it is. We are working toward electronic birth and death certificates. I think that the path that NEDS has blazed here, in particular with their software, I think will be very useful to us. So I am actually quite taken with it.
DR. LUMPKIN: The second question has to do with your remark on developing new birth and death certificates. There was a recent article that was published by one of the Kansas City newspapers, tying in and looking at rates of HIV related deaths among the Catholic priests. They did that based upon death certificate information, which is variable as to its releasibility from state to state.
Have you -- or is this something that perhaps we should look at in conjunction with you, really taken a look, given the privacy environment that we are in today, of the vital records system and whether or not there needs to be some revamping of our concepts of privacy and vital records?
DR. SONDIK: I think that would be a very useful thing to do. One of the reasons I am actually pleased to be presenting these annual reviews again is to stimulate these kinds of issues being raised.
I think it is very important that we do that, and I think it is very important that we look at the quality of the information that this system is producing. So I would encourage this type of activity.
DR. LUMPKIN: Vicki and then Kathleen, and then we'll have to break.
DR. MAYS: I have two questions.
DR. LUMPKIN: New member.
DR. MAYS: New member. One has to do with the issue of the budget. I think it is interesting that we are all asking about budget, because I think like others, I am impressed with what is done, but at the same time as a frequent user, when there are new things, the need for more money.
I want to ask you a question about a specific program you talked about, which is your extramural program. I know there has been one in the past, very specifically on minority health. Its budget has gone down rather than up.
What is the situation in terms of the extramural program, in terms of its healthiness regarding this funding? Let me let you answer, and then I'll ask my second question.
DR. SONDIK: Well, what we funded last year were three centers of excellence in health statistics that we did using extramural funds from CDC, called prevention research funds.
We were able to fund these three centers, one in Minnesota, one in Michigan and one in North Carolina. I think we should fund five times that many in order to create and nurture the kinds of research that these organizations are doing, such as research on a variety of different methods, looking at minority statistics, any number of different topics.
One of the things that I didn't mention here because I just ran over it quickly, I think the challenge of research for us is enormous here. We are going to be -- it also relates to issues related to privacy and confidentiality. There are going to be new ways of communicating with people. Particularly the Internet I think is going to be a critical part of our armamentarium of survey tools. But we are not going to be able to use it unless we are able to do the research that we need to do, starting now. We don't have the dollars in our budget to do that.
I don't think frankly that we are the best people to do that at this point. I think the community in general should be very much involved in this. By community, I mean the research community, survey research community, should be involved in doing the fundamental work that needs to be done on how we communicate with people in these new ways.
So I see these three centers as just a tiny amount. The program that we had on minority statistics was hardly a program. A decade ago we had about a million and a half dollars. I think at last count that went into grants, our most recent activity was in funding dissertation grants that in fact were related to the centers. We thought we would tie it together to try to get as much bang from the few bucks that we have.
We simply don't have the million and a half to spend on that at this point. I think over the last year we spent someplace between $150,000 and $200,000 on these. I would love to see us have more, but the demands from the other parts of the program have just been too great. We have had to take pieces of the health care surveys out of the field to support the overall budget. I am not happy with doing anything like that, but I felt that that was a tradeoff that we could do because they could be more easily put back in the field.
It is very difficult for us to take HIS for example out of the field and then get it cranked up again. And HANES has taken years to be cranked up again. So it is very tough. I do feel that is we are maxed out on our credit cards, quite frankly.
I would love to see us do more extramural research. It may be that there are other pots of money. I particularly hope that CDC, our parent organization, has more resources for extramural research, and I would make research on statistics related to the minority populations in this country a significant priority for the use of that.
DR. MAYS: My second question, which you touched on a bit had to do with the notion of information being put out in ways in which people can get it on the Internet, because you are generating a tremendous amount of information. You actually brought up a piece.
I know for example even at your data users meeting, there were wonderful presentations for that, but if you don't know to ask for a CD-ROM, those are not on the Internet in a way in which you know how to get them. So I guess the issue is the extent to which you have resources to begin to put things on the Internet.
DR. SONDIK: We've been working on that for some time. Any suggestions -- the best people to comment on dissemination are people who ar actually using our dissemination facilities. If you are like me, you are at 11 o'clock at night looking for something and you say, I can't find it easily. I write a note to myself and go in the next day and go talk to somebody who is involved with this, because that is when you really put it together, you really see whether or not you are being responsive.
So any suggestions that you have, we would be happy to have. We have been putting a lot more in terms of research, working with other agencies, the ferret mechanism or tool for getting information out of the large database which was developed in part by Census. We have been applying to HANES. We have been using 20/20, which I believe -- this new component we have, state health statistics by sex, race, ethnicity uses the 20/20 engine developed in Canada as a driving tool.
We really haven't settled on one way of doing this. This in fact was done cooperatively with the Office of Women's Health around the corner here, and I'm blanking. Another organization also was -- the Office of Minority Health as well, in putting this together.
So we are trying to use all the tools that we can, make this attractive, but make it really usable. Any suggestions you have would be gratefully received.
I think one of the reasons we had such great attendance at this data users conference had to do with the explosion of the use of the Web and other informatics, information tools. The attendance was almost double what we had anticipated, and it was really too tight for the hotel that we had it in. But I think it created the right kind of camaraderie if you will.
DR. LUMPKIN: Kathleen, you had a question?
DR. FYFFE: Just to help me have some context, does anyone here know, rounded to the nearest billion, what the HHS budget is?
DR. SCANLON: If you count the entitlement programs, Medicare and welfare, we are probably pushing $400 billion.
DR. SONDIK: I was going to say $350, but I think you're right.
DR. SCANLON: There is a discretionary part of it which is much smaller.
DR. FYFFE: Thank you.
DR. SONDIK: This is our home page, and I put it up to just remind me to ask you to take a look at this and peruse it a bit, and see if you can find things, see what strikes your interest.
When I did it, I found that there were new things on it that I actually hadn't seen, which include the 1996 NHIS income data files, which I had not seen, which came up on the 27th. Nothing could be more timely than that, I guess, and the state health statistics by sex, race and ethnicity, which were put on on the 20th. So this is something that is always changing. But if it is not easy to use, then -- that is what is demanded these days, not just that it is there, but that it be there and easy to lose. So do let us know.
DR. LUMPKIN: Thank you.
DR. SONDIK: Thanks for the opportunity to speak with you.
DR. LUMPKIN: Obviously next time we'll have to schedule a little bit more time, next year, for the annual report. Thank you very much.
We have two additional items before we go to lunch. I think we can finish up by noon if we don't take a break, if that is agreeable.
The first item is the 50th anniversary symposium summary, which is in Tab 5. We have two items that we need to deal with. The first is to approve the summary that is here. The second is to approve a process for the 50 year history. So let me first deal with the summary, and then I'll describe the process that we would like to follow with approving the history.
Any comments on this? I think we have seen this before. We have made some changes. There were comments that we have gotten back. They have been mostly incorporated, if not entirely.
DR. COHN: Can we vote on it?
DR. LUMPKIN: Yes, we can.
DR. STARFIELD: I make a motion that we accept it as presented.
DR. LUMPKIN: It has been moved and seconded. Any further discussion on the motion? All those in favor, signify by saying Aye.
(Chorus of Ayes.)
DR. LUMPKIN: Opposed, say Nay? Abstentions? Okay.
The second item is the 50 year history. We have scheduled for final acceptance approval of that by the full committee at our February meeting. The executive subcommittee reviewed an initial draft. Yesterday we made some suggestions. We will be making other suggestions by e-mail, after which the draft will go out to the full committee for comment.
The process that I would like the committee to approve would allow the Executive Committee to accept this report as being final in our conference call that we will have sometime in January, and then we will have a final approval by the committee.
The reason for this is that if we empower the Executive Committee to accept it, we can finish out the contract, and then we can of course make any changes that we want in our final adoption in our February meeting. So I would like to propose that process.
DR. COHN: So move.
DR. LUMPKIN: It has been moved.
PARTICIPANT: Second.
DR. LUMPKIN: And seconded. It has been moved and seconded that we will empower the Executive Committee to accept the report as being completed in the conference call in January and final approval of the report at our February meeting. All those in favor say Aye.
(Chorus of Ayes.)
DR. LUMPKIN: Those opposed, say Nay.
DR. GREENBERG: Maybe we should just alert people to the schedule for the full committee receiving the next draft of the report and when their comments are due, since this will come over the holiday period to some degree. Susan, can you?
DR. KANAAN: I'm afraid I haven't fully thought through the stages.
DR. LUMPKIN: Do you want to go to a microphone?
DR. KANAAN: Sorry. I plan to have a new draft, assuming that there aren't any huge changes required, to all of you by middle of December, at least a few days before Christmas. Then if you can get it back to me by very early in January, that would be helpful.
DR. LUMPKIN: Any other questions or comments? I would like to thank Susan for her dedication and work. It has been a pleasure working with you, and the product always reflects at least my comments on the various products, so I always like it. But thank you.
The next item before lunch is a report on the Collaborating Center for the Classification of Disease in North America. We have a presenter who is not frequently before the committee, but we appreciate her coming today, with a disk, so this should be interesting.
DR. GREENBERG: I guess I did have an obscure introduction.
(Recording interrupted.)
-- WHO Collaborating Center for the Classification of Diseases for North America. I just thought I would give you a little background on what that Collaborating Center is.
Actually, I learned to my surprise a few years ago that there are something like 1800 or 2000 collaborating centers, or there were, under the World Health Organization on a whole host of topics. Many of those actually were not really active at the time that they were numbered, but the collaborating centers is the way that the WHO works with member countries and research organizations, et cetera, to carry out parts of its agenda and particularly its research agenda.
There is a network of collaborating centers on the international classification of diseases which is a very active network of collaborating centers. When Dr. Bruntland took over as Secretary General of WHO, she put a moratorium on collaborating centers, because as I said, there were 1800 of them, and it seemed like the situation had gotten out of hand. They did an evaluation of which ones were active and should continue, and this network was found as one that should continue and was active. I think there will be quite a smaller of collaborating centers when this process is through.
But in any event, it is housed at NCHS, and it has terms of reference with WHO. Every collaborating center has a set of terms of reference for both mortality and morbidity applications of ICD and revision of the ICIDH. You have heard particularly about the latter, fleetingly, during this morning from several presenters.
Our collaborating center is the North American collaborating center. It covers the U.S. and Canada, and just as of this last meeting which was held -- the annual meeting that was held last month, we have been requested to also include under our umbrella the English-speaking Caribbean countries. There also is a collaborating center for the Spanish language, which is currently in Venezuela, and there is one for the Portuguese language, which is in Brazil. But the English-speaking Caribbean countries which PAHO does include in its overall agenda -- and it includes U.S. and Canada, but they really don't have a collaborating center to affiliate with, so I think they will be affiliating with ours.
As I said, it is one of a network of collaborating centers. Currently there are several gaps in the coverage of these collaborating centers to look at worldwide coverage, and the role that these collaborating centers play in facilitating in particular mortality data collection, which is then sent to WHO.
We did have one in Arabic countries, briefly in Kuwait; it is no longer active. So we current don't have centers in the Afro region, the Emro region or the SEARO, which is Southeast Asian. So that has been a priority for some time, to try to get centers in those areas.
The meeting that we held last month of the collaborating centers, and our delegation from North America included people who I think are also familiar to you. Gary Rosenberg, who has been the chief of mortality statistics for many, many years, and also Donna Pickett, who has the lead at NCHS for morbidity statistics, morbidity classification, basically.
Then we also had two representatives from the Canadian Institute for Health Information, whom we work very closely with, and Statistics Canada, although they did not have a representative. We work with them as well, because they are responsible for the vital statistics of Canada.
In any event, a few years ago we developed a joint work plan with the collaborating centers, and our meetings now pretty much focus around that work plan. The priorities which we established, which continue to be our priorities, are the implementation of ICD-10 worldwide, the updating of ICD-10. As some of you may know, the international classification of diseases up to ICD-10 would be accepted, adopted, and then it was basically static until the next revision, which was either a 10, 15 sometimes as much as a 20-year revision process. There was no real way to update it on a continuing basis.
This particularly was highlighted when HIV and AIDS came upon the scene, and there was no actual process for adding appropriate codes. It was being captured under some very general codes that didn't allow any tracking of it. The U.S. and some other countries did develop codes for the condition, but it was never internationally accepted or promulgated. So this called attention to the real need to have an updating process. Also, the implementation of the new classification is just such a massive activity and so resource consuming.
As Dr. Sondik mentioned, we just completed a multi-year process of implementing ICD-10 for mortality statistics. The idea of being able to make more incremental changes rather than a massive change very frequently was appealing.
So that has been a major focus of the collaborating centers over the last few years, and will continue to be. We say among the collaborating centers that we don't like to mention the 11 word, which is ICD-11. Some major changes, genetics, whatever, findings could lead to a need for a totally new classification, but our preference is to do it in a more incremental way.
The third priority was to define the parameters of the family of international health classifications to priortize work on the family members, which includes as you can imagine sibling rivalry, et cetera.
Our joint work plan. Under this we have established a number of committees for updating and modifications to ICD, which I mentioned, implementation of ICD-10 worldwide, training and credentialing, because we found that particularly in the area of mortality statistics, but actually worldwide it is an issue in morbidity statistics, too. Kathleen can probably report on this as well.
There is really a dearth of people who are well qualified to use the classification. This obviously impacts on the quality of the data significantly.
Part of the problem in mortality -- at least in morbidity classification in a number of countries, it is tied in as you know with hospital, with reimbursement, et cetera. There is a real profession there that probably is overworked and underpaid, but nonetheless at least is an established profession that can command a reasonable salary, et cetera.
In the area of mortality statistics, this doesn't exist at all. We have basically in the U.S. have homegrown our experts, and they are the leading experts in the world, but they have very little status as a professional group because of the lack of a critical mass probably in any given country.
So we are working on an effort -- I am the chair of this subgroup on training and credentialing, and we are working on trying to develop training approaches around the world, and then working with the International Federation of Health Records Organization, IFHRO, to develop a credentialing program for both mortality and morbidity coders in order to increase the quality of their education, their knowledge and quality of the data and also the status of their occupation.
I am pleased to report that IFHRO has just approved this, and we have a work group that is getting started in that regard. It is being co-chaired by Kathy Brash from the American Health Information Management Association, as well as somebody in our collaborating center network from Australia. Then we also have a group on the family of international health classifications.
Just a few words about updating ICD-10. I tried to just give an overview here of some of these activities. If the subcommittee on standards or any other group is interested in more detail, I'm sure we can provide it at a future time.
We did establish mechanisms. It is a completely new international process for updating ICD-10 in 1997. As of 1999, these have been fully implemented.
One component is something called a mortality reference group, which is chaired by Harry Rosenberg. It includes representatives from most or all of the collaborating centers. It addresses issues that are identified by a mortality forum, which is an international electronic news group on mortality coding that was established about three or four years ago as well. The secretariat for that is in the Nordic collaborating centers, in Upsala, Sweden, and it is a completely open forum. For any of you who are interested in mortality statistics, you can join it, but it is primarily obviously made up of people who are working in this area.
Despite the fact that there is one international classification of diseases, ICD-10, there is one version of ICD-10 in many languages, and the fact that there is a whole set of rules for how you use ICD-10 for mortality statistics. I'm sure won't come as a surprise to you that there is a lot of variation in the way the data get collected.
So the real goal here is to try to improve the comparability of the information collected, to interpret the ICD-10 rules in a single way, but in a way that includes input from all of the countries who are using it, so that trends aren't unduly disrupted, et cetera.
We have actually built the ICD-10 rules in the U.S. as we interpret them into our software that Ed Sondik referred to as being used by a number of countries. As these rules get reinterpreted or get re-thought through, then we are putting those changes into our software. But of course, not all countries are using the software or doing automated coding, so we also are disseminating to all the other countries what these changes are, or what these interpretations are, because we learned that there are multiple ways that people are interpreting the rules.
Also, if the reference groups feels that the rules should be changed, or that there need to be new codes established, changes to the classification, they then make those recommendations to something called the update reference committee, which is chaired by Australia, by the Australian collaborating center.
It receives recommendations from the mortality reference group and also from the collaborating centers. The changes that are needed for mortality classification purposes come from the mortality reference group; the collaborating centers are the vehicle for changes that would be needed for morbidity.
Also, the main goal or challenge of the update reference committee is to balance clinically current and credible classification with one that has stability over time for comparative purposes. That of course is a continuing challenge. It makes recommendations to the center heads for approval, and those are then referred to the WHO secretariat for implementation.
What we have decided is that annual updates, which originally were envisioned, were just not practical. It just wasn't possible for all the countries to make annual changes. So we approve changes on an annual basis, but the cycle is, we actually implement them every three years, for any major changes, annually for minor changes.
The family of international health classifications, just to give you some idea of the breadth of what the collaborating centers are looking at and reviewed at this meeting. The two main classifications are ICD and ICIDH. I'll be talking about ICIDH more in a minute.
There is also an international classification of external causes of injury which is being developed, which is a more expanded classification for research and other purposes. Right now, we have external cause of injury codes in ICD-9 and ICD-10, but this is considerably more expanded. It is a multi-axial classification, and CDC is very involved in developing that. It will be compatible with ICD-10 to the extent necessary.
Primary care classifications and also classifications of surgical procedures and interventions. There are no international classifications for surgical procedures and interventions. The problem this causes is one, a lack of being able to make comparisons among countries, and also, there are a lot of countries that don't have a classification. All the major developed countries have their own classification, so getting us all to merge -- we can't even get to one in the U.S., let alone one in the world, so that isn't even a goal.
But we are looking at ways to collect information on sentinel procedures, so that we can get some information cross-nationally, and also ways to meet the needs of countries that have no classification for surgical procedures and interventions, but certainly don't need anything anywhere as complex as what we and others use.
As I mentioned, there was a moratorium on collaborating centers. They are all going to be redesignated. The hope is to redesignate them all in 2001. WHO would like all the collaborating centers to cover ICD and ICIDH. This is not a problem obviously for our collaborating center, because we already cover both of them, but it is for several where there are completely different organizations such as in France. The health ministry is the ICD group, but it is more in the welfare and human resources agency that ICIDH is, so this is going to be a challenge.
The collaborating centers are particularly concerned that this not be at the expense of the good work that is already been done by the individual collaborating centers. In China, we have one collaborating center trying to implement ICD. They have never actually implemented ICD in China. They are trying to implement ICD-10 for all of China, and then to ask them to take on ICIDH, you can just imagine. So this is a continuing concern.
As I mentioned, WHO is going to seek to identify appropriate organizations to serve as collaborating centers in AFRO, EMRO and SEARO. We need these collaborating centers both for language versions, but also for promoting and facilitating the implementation of the classifications in those areas.
A major issue that has been on the plate of the collaborating centers ever since I've been involved, which is 1995, is the lack of resources at WHO to support these collaborating centers. They at one point apparently had as many as eight people working on ICD. There is now one person. He is nearing retirement, he has actually threatened to retire in February. Since I am hosting the next collaborating centers meeting next October, I am begging him not to retire under after then.
But it is a major problem. There are no funds within WHO to support -- almost no funds to support these classifications. So we come up with updates and make recommendations for modifications to the classification, and it is touch and go whether those can be implemented internationally, because of the lack of resources at WHO. We have been writing letters to the executive board, to WHO. We have been trying to call everyone's attention to this, but it is a continuing problem, and it is going to be a problem with ICD, too, I've been told by the person in charge there.
Moving to ICIDH, the second meeting that I attended, which as I said I just got back from, was the ICIDH-2 revision meeting. It is expected to be the last of a series of revision meetings on ICIDH.
Briefly, ICIDH, the International Classification of Impairments, Disabilities and Handicaps, was first developed in the '70s, published in the 1980s. It has been undergoing revision really since 1990, but most actively since 1993.
Those who are participating are collaborating centers such as ours and others around the world, international task forces. Ceil Kennedy, who has recently come to ASPE from NIMH is sitting in the back there. She has been the co-chair of the mental health international task force. There is also a children's international task force co-chaired by Rune Simionson, who met with the subcommittee on populations, and an environmental factors task force which has been funded by CDC.
We had several drafts, as I've noted here. In 1999 to 2000 there was a beta-2 draft with field testing which has gone on in the past year, and we have reported to the subcommittee on populations on that.
There also is an expert committee on measurement and classification of health, which Jim may have referenced, which is looking at the three resolutions, which you have received various versions of this morning. But I have also given you the entire package on those three resolutions, which are to be presented to the WHO executive board in January, and then to the World Health Assembly in May of 2001.
Following a meeting of the expert committee in September, there was a pre-final draft of ICIDH-2, which was released in October, towards the end actually of our meeting of our ICD collaborating centers.
There was a final revision meeting in November, and then as I said, it is scheduled to go to the World Health Assembly in 2001.
I'm not going to go through this, but you do have the slides as to what some of the aims of ICIDH-2 are. It is really to work in a collaborative way with ICD, which classifies diseases and health conditions. ICIDH is to classify -- it is sometimes called the consequences of health conditions, but because that is too linear sounding, it is really more outcomes, components of health that are not captured in ICD, most significantly functional status and other aspects of a person's ability to perform various activities and to participate in various social roles and environments, and generally in life conditions, which gets to the well-being part of the definition of health.
It is intended to provide a common language among disciplines. There really isn't one in the area of functional status, and consequences of health conditions, permit comparisons and to have systematic coding.
Some of the foundations of ICIDH-2. I won't go through them all, but just to mention that it is intended to be for all people, not just as a disability classification, though it certainly serves that purpose. It tries to integrate a medical and a social model. ICD is pretty much a medical model, and ICIDH tries to bring in the social model as well.
It includes the environment. The first version of ICIDH in 1988 did not include environmental factors. That is seen as a very important aspect of it, because if a person has various functional limitations or activity participation restrictions, these can be addressed through rehabilitation of the person, but they can also be addressed, and need to probably be addressed as well through changes in the environment. It attempts to be culturally applicable.
It says life span coverage. It is not strictly adult driven, but this version is not adequate for children. That has been recognized in the children's task force. As soon as this version is finalized, it will begin its work in developing a children's adaptation.
The beta-2 draft which came out and has been field tested in the past year basically has three dimensions, body structures and functions and the negative or problem aspect of that is an impairment, activities which are functioning at the person level, and again, the limitations there being issues or problems, and then functioning at societal level restrictions. It also has environmental factors.
There were major issues raised, and they were raised to the subcommittee on populations about the overlap between the activities and participation dimensions. This has been something that the North American collaborating center has been particularly looking at.
Because of the problems that were seen in ICIDH, the beta-2 draft, there was a pre-final draft that was released in the end of October. There were a number of changes made in this which were of concern to a lot of the collaborating centers and others reviewing it.
This is kind of a complicated area, so I won't go into detail about it, but there was reconceptualization of the activities dimension as capacity and a uniform environment. Participation was reconceptualized as performance in the current environment. An identical list of domains was created for activities and participation with the only difference being whether a person can do it in a uniform environment or does perform it in a current environment. Functioning was taken out of the description of the classification and out of the title that was planned for it.
There was some significant criticism of this pre-final draft by the collaborating centers, and that was what occasioned the letter from this committee to WHO and also to -- as Jim mentioned, it was also sent to the Office of International Health and others in the Department who were interested in these issues.
These were some of the concerns that were raised, that the time line was inadequate for reviewing this new draft, the new features weren't tested, the loss of key concepts of beta-2, loss of the core concept of the full range of functioning across the body, individual and society. The very problematic concept of a uniform environment, the feeling that capacity and performance should be an application of the classification, not the defining concept.
We proposed an alternative proposal then shortly before the meeting a few weeks ago in Madrid. It built on the respective strengths of the beta-2 and the pre-final versions. It maintained the central concepts of the full range of human functioning and environmental factors, but it permitted use for capacity and performance as an application rather than part of the actual core classification, and just enabling WHO to derive the data that they desire, which is described to some degree in these resolutions.
We felt that this proposal allowed flexibility for multiple applications. Our alternative proposal included a component for body functions and structures, a single list of activities and participation. Since in the revision it had been essentially the same list anyway, we felt it should be a single list, and then it still kept environmental factors. We wanted the single list to be in neutral terms without reference to capacity or performance.
We felt that capacity and performance could be collected through qualifiers. We wanted to retain the beta-2 definitions for activity and participation and then allow countries to group domains as they saw fit. There are a number of countries that agree on this, but a number don't. We realized there was no international agreement there, so we recommended a more flexible approach. We wanted environmental factors to be used for coding whether it is a uniform or current environment, or whatever type of environment it is, and functioning to be included in the title.
As my final slide, I am pleased to report that we had a very productive meeting in Madrid. There were those who supported the pre-final draft and those as I have described from the collaborating centers who were very much concerned about the pre-final draft.
There ended up being pretty much of a coalescence around the alternative proposal that was proposed by the collaborating centers, at least in principle. They did agree to a new title which would include functioning again, the international classification of functioning, disability and health.
WHO has now in like a week's time revised its pre-final draft and circulated it to the participants for comments by this Thursday.
I have just looked at it briefly. I have a few concerns about it, but for the most part it does attempt to implement what we agreed to in Madrid, and we will be discussing our concerns with WHO in the next several days.
This is really on a fast track, because the pre-final draft has to be translated into the six official WHO languages and distributed to the WHO executive board by December 15 for their consideration in January.
I should just say as a final comment, obviously whatever comes out of this final process probably will need further testing, piloting, et cetera in the U.S., before it would be used for any particular purposes beyond research. But I think we have made a lot of progress now in reaching some consensus that will let us move forward with the classification, and also we agreed that there will be an ongoing updating and modification process, somewhat patterned after the process I described for ICD-10. So if we haven't got it quite right now, at this point I think people feel they are only going to learn more about it by trying to use it, and resources for testing, et cetera, have pretty much dried up in most of the countries and at WHO.
So that was kind of a worldwind trip through the ICD and ICIDH collaborating centers activities. I realize I have gotten you right to the lunch hour, but if you have any questions, I'm glad to answer them now or later.
DR. LUMPKIN: Simon?
DR. COHN: I had a question just to start with, just to be sure my acronym is right. You mentioned ICIDH-2 throughout your presentation. Do we now refer to this as ICIDH-2 or ICFDH-1?
DR. GREENBERG: This classification has gone through more names than some of us have gone through titles in our job history. I think they are going to keep ICIDH-2 as the acronym because it is known, but the current name being proposed is the International -- it was the International Classification of Functioning and Disability.
Because of issues which you can understand more fully by looking at these draft resolutions, there was a desire by WHO to put health in the title as well, though by definition it is a health classification. So they then dropped functioning from the title, which caused great consternation among folks who were looking at this as a functional status classification, so we now have a compromise name, which I think is the name on the version that we just received.
It is what happens with the abbreviation for it. I can't really predict, but they are calling it ICIDH-2 even if it does not relate to the actual letters.
DR. LUMPKIN: Kathy?
DR. FRAWLEY: Marjorie, in 1993 or 1994, I know Paul Plasik had convened a conference to discuss the utility of this classification. I did have the opportunity to present some testimony at that meeting.
One of the things that I lost track with over the last couple of years is whether there has ever been any pilot testing in the U.S. on this particular classification.
DR. GREENBERG: We did all the testing that was required by the WHO to the extent possible. The last version for beta-2 was some field testing, which included coding scenarios, et cetera. We have some results from that, which we have presented and can present further to the subcommittee on populations.
DR. IEZZONI: Our subcommittee has reviewed this, and we will probably have some comments on how we feel about that pilot testing in the report that we hope to present to you guys in February.
DR. GREENBERG: The collaborating center didn't actually do a pilot test with live records, but some of the task forces did. I think Ceil's task force did, others around the world did. We also had a specific project field test looking at the overlap between activities and participation. We have had a variety of tests, but as I said, there hasn't been a major effort to use it with health records, which I think is what the next horizon is.
DR. FRAWLEY: The reason why I raise that is because in order to use that classification, there would have to be substantial documentation in a patient health record or in whatever tool you were using, and that doesn't exist in many ways. So it is almost like a corollary that there would have to be documentation guidelines that would be recommended in order to be able to move that classification forward.
DR. GREENBERG: A number of professional associations have actually been involved with this and have looked to incorporate ICIDH into their documentation of patient care and in rehabilitation and some other areas, they are probably more in sync with this in the general health care delivery system. I think you're right.
We have taken a lead in the U.S. in developing training tools, both for ICIDH-1 and now we are developing one for ICIDH-2.
Ceil, did you have something you wanted to -- if so, come up to the microphone.
PARTICIPANT: (Comments off mike.)
DR. GREENBERG: There is a project now by the American Psychological Association, a manual for how you would use ICIDH-2 in assessment.
DR. KENNEDY: I'm Ceil Kennedy, the chair of the International Mental Health Task Force. By the way, it was announced that all task forces which were -- all of them were created for the revision process once it is through the World Health Assembly will sunset.
So I must say that we actually are thrilled about this, in the sense that we go out in blazing glory. Mental health has been since the 1980 version just well entrenched and embellished, and we feel we have made an incredible contribution to the classification process and bringing parity of mental health and the ensuing disabilities and functional status reporting.
So that little ad aside, the American Psychological Association initiated contact through the mental health task force to work with the World Health Organization to develop a clinical assessment version, a manual, for application and use in clinical assessments.
Now, that obviously isn't necessarily the same thing as the standardized way of entering something onto an administrative record, but it begins to provide the base for it. From that, we will also need eventually to -- once we start to have an assessment manual to guide the use of the tool, we will also need a training session that would have to grow.
So that is just one aspect. Obviously there will be other manuals for use in research, just the way ICD is.
One of the things, talking about acronyms, ICD and DSM, if you notice those names have changed over the years. The APA was proposing to do a standard procedural assessment manual, until they realized that the acronym is SPAM. But at any rate, thank you.
DR. GREENBERG: Clinical uses of ICIDH is obviously one use. Also, it can be used as a framework and has been used as a framework for a lot of disability survey activities. One project that we did in our field testing was to back code with five other countries, back coding our disability surveys to ICIDH, to both look for gaps in ICIDH and gaps in our disability surveys.
DR. LUMPKIN: Jeff?
DR. BLAIR: I guess when I read through the draft that was distributed to us several months ago, I was really delighted and impressed and pleased. So I just wanted to first say how pleased I was that this work effort is going on. I looked through in terms of critiques, and I just thought it was so well done. Pieces that I thought about were, so many of the areas of functionality and social dimensions are -- I am a little concerned that this is a separate coding set, so I have two questions.
One of them is, what do you view as the possibility that ICIDH or whatever its new acronym might be might be more tightly coupled with ICD in the future? That is my first question. The second question is, do you see any indications where there are entities or software companies which are looking at automating the coding? While these systems are richer and more helpful to us, if we have to depend on manual coding, it is counter productive. If we can take advantage of information capabilities, softwares, to automate that coding, we can more readily bring it into all aspects of our health care information age.
So those are the two questions I have.
DR. GREENBERG: I know we're running tight, so I'll just say, first of all, I appreciate that feedback, Jeff. On the latter, I think you are absolutely right, although I don't know that there is anyone working currently, because the classification has been a moving target.
I think some type of automated collection and user friendly way of being able to collect this is probably going to be essential, because it is going to be a complicated classification.
As to how it could be used in the clinical environment, that is one of the things we obviously asked the subcommittee on populations to look at.
DR. IEZZONI: Our subcommittee has been looking at all of this. We'll be talking about this in our report that you will see in February.
DR. GREENBERG: I hope the full committee will continue to have an interest in this.
DR. LUMPKIN: Barbara, last question, and then we'll break for lunch.
DR. STARFIELD: Just a quick question. The ICIDH-1 was supposed to be coupled with diagnoses. This is uncoupling them, is that right? I had a big discussion with Rune Simmerson about it, that the effort in ICIDH-2 is in fact not to relate the disability to the ICD or a particular disease, but to think of it as person focused.
DR. GREENBERG: It is person focused, yes. It obviously can be used with -- because very many different types of health conditions can result in types of functional limitations, or you can have functional limitations without a real health impairment.
DR. LUMPKIN: We will be looking forward to the report from the population subcommittee and we will be moving forward.
At this time we'll break for lunch. We are scheduled to reconvene at 1 o'clock.
(The meeting recessed for lunch at 12:10 p.m., to reconvene at 1:00 p.m.)
A F T E R N O O N S E S S I O N (1:08 p.m.)
DR. SCANLON: Before we begin, let me just make a couple of announcements. I think you all know now that the Secretary has appointed four new members to the committee. Dr. Vicki Mays, who is here with us today from UCLA, Ted Shortliffe from Columbia University, who won't be at this meeting but I think will be at the February meeting, Paul Schwartz, who will I think be here tomorrow from Brooklyn Law School. Paul is an expert in health law and privacy, and Gene Lingerich, who is from Pennsylvania, a chronic disease epidemiologist and researcher, he'll be here at tomorrow's meeting as well. So we will have an opportunity to meet the rest of those as well.
But the Secretary and HHS obviously are also very appreciative of the services and contributions of the folks who will be rotating off the committee. The Secretary wanted us to provide -- and she spared no expense in providing a letter and a colored certificate to the members who will be rotating off. She is a very clever person, and she leaves open the possibility of calling on all of you again, even though you may return to your real jobs.
Bob Gellman is not here this afternoon, but we have rotating off the committee Kathleen Frawley, Lisa Iezzoni and Elizabeth Ward. Andy Kramer also has rotated off.
DR. GREENBERG: And Bob Gellman.
DR. SCANLON: No, Bob is not here this afternoon. So if I could take a couple of minutes, John, with your indulgence, I'd like to give the certificates and read the citations.
DR. LUMPKIN: And we need to just point out that while Lisa is rotating off, she will be rotating off before the next -- will you be at the next meeting? We are negotiating this because of the report on ICIDH.
DR. IEZZONI: My voice could be here.
DR. LUMPKIN: Anyway, she won't be present at the next meeting, although her resignation won't take effect until somewhere around that time, because she can't leave until she finishes that report.
(Simultaneous discussion.)
DR. SCANLON: With your indulgence, let me do this in alphabetical order. Kathleen Frawley. The Secretary says, It gives me great pleasure to award this certificate of appreciation for your nine years of service to the Department of Health and Human Services as a member of the National Committee on Vital and Health Statistics. Is that right?
DR. GREENBERG: Four years. But she was in the audience.
DR. SCANLON: The committee is one of the oldest --
DR. LUMPKIN: Wait, I'm sorry, but there is an explanation for that. Despite the fact that she tries to hide the fact that she is a lawyer, there is a story about the lawyer who does die and go up to heaven. St. Peter says, I'd like to thank you because you have donated 150 years to the legal profession. The lawyer said, no, I don't know what you mean, I'm only 75 when I died. He said, oh no, we've seen your time sheets.
I'm sorry, you were saying?
DR. SCANLON: The committee is one of the oldest and most prestigious advisory groups serving the Department. Its recommendations have helped shape health statistics, health data standards, health information policy and epidemiology for our nation and have had a profound impact on new legislation. Your knowledge, expertise and experience have contributed greatly to the excellent work of the committee. We wish particularly to commend you for the time, effort, leadership and counsel you provided as a member of the Work Group on Computer-Based Patient Records, Subcommittee on Standards and Security, Executive Subcommittee and as chair of the Subcommittee on Privacy and Confidentiality.
Only the very best are asked to serve, and we are proud to have had the opportunity to associate with you in this endeavor. Should the occasion arise, we would like to feel free to call upon you for further assistance. Sincerely.
Dr. Iezzoni as well. Yadda yadda yadda. Your knowledge, expertise and experience contributed greatly to the work of the committee and particularly we wish to commend you for the time, effort -- Elizabeth as well. Let me go right to the particulars. Again, your knowledge, expertise and experience have contributed greatly to the work of the committee. In particularly the Secretary wishes to commend you for the time, effort, leadership and counsel you have provided as a member of the Subcommittee on Privacy and Confidentiality, Subcommittee on Populations, Work Group on Quality and the Work Group on Public Education.
So I think we are all very appreciative. We'll catch up with Bob Gellman later.
DR. GREENBERG: I'm not sure they are in the room right now, but they will be in the meeting of the Subcommittee on Populations. But Jerry Hendershot, Dr. Jerry Hendershot from the National Center for Health Statistics, is retiring at the end of the month, so I wanted to recognize his contributions in the staff of the Subcommittee on Populations and the lead staff to the Work Group on 21st Century Health Statistics. We hope to be free to call upon him in the future as well. He is not leaving the area.
Jerry also played a major role in the U.S. involvement in the ICIDH revision process from its beginning. So I'm sorry he is not here, but I wanted to recognize that.
Also, Patrice Upchurch of our staff has taken a position at NCHS, so she will be leaving the committee, but we also know where to find her. So I just wanted to mention those two staff changes, departures.
DR. IEZZONI: When is Patrice leaving?
DR. GREENBERG: This is her last meeting, but we will cover your future meetings, don't worry. But we will be recruiting also to replace her.
DR. LUMPKIN: Thank you. At this point, we will go to our afternoon panel. Thank you for your patience while we took care of a few small housekeeping issues.
We have with us a panel on implementation of HIPAA and data issues. Simon, did we decide who is going first?
DR. COHN: We'll ask Lee to.
DR. LUMPKIN: Lee Barrett, who is the current WIDI chair and will be opening up on the strategic national implementation process.
DR. BARRETT: Great. Thank you, Mr. Chairman and members of the committee. My name is Lee Barrett, and I am here on behalf of WIDI and the strategic national implementation process, which is part of WIDI.
I have been involved with this industry -- as John was mentioning, I am currently the chair of WIDI, and I have been involved with this eight years as chair of the accredited standards committee, X-12. As many of you who have been involved in the standards committee, we are veterans in this part of the process.
I also am executive director as part of an organization called the Electronic Health Care Network Accreditation Commission, EHCNAC, which also accredits value-added networks and clearinghouses in the industry. So I have been involved in this process for a number of years and have been chair of WIDI for the past two. In fact, my term is up at the end of this year.
As I said, I'm going to talk to you about the state strategic national implementation process, which is part of WIDI.
First, let me go over organizationally how we are set up. We have got basically the SNIP process under the auspices of WIDI, and I am acting in the role of the board liaison to SNIP, in an effort to assure that we have got clear direction for the SNIP organization from the board.
We also are put together -- WIDI from the very beginning is a consensus based and industry based coalition, made up of public, private sector and other health care industry initiatives, as well as constituencies and stakeholders that are a part of it. So it is very broad based and very much an open process.
That is exactly why SNIP became very much a part of that process. We felt that as far as HIPAA and the implementation side and what WIDI has been focused on, SNIP is very much a part of that implementation. We again tried to leverage a lot of the consensus based capabilities and the broad-based capabilities that WIDI is looking to do.
There are three different work groups that are a part of this SNIP initiative. There is the transaction work group, security and privacy, as well as education and awareness. For this testimony, what I am going to do is focus on the transaction work group.
Through industry consensus -- and that is what WIDI has been based upon for all these years. What we are trying to do through SNIP and the transaction work group is to define the transaction deployment plan. This includes all of the data content issues that surround it, all of the deployment side of it, including a sequencing side of it, and try to get consistent industry-wide implementation, and be able to create the consensus from the industry around an overall consistent approach.
We are also trying to effect an orderly implementation process. One of the key things people are still going through is trying to determine is, how do we implement these, how do we implement the transactions, how do we implement the different components that are part of HIPAA. As we look at the transaction side of this, what we are trying to do is to put some order to it.
We have been very aggressive in our relation to outreach, in getting other organizations and other stakeholders involved in the process. We are trying to create base studies, best practices and trying to get as much from what the industry has already learned from implementing different components, rather than recreating the wheel. We feel that we can learn a lot from the implementation that has gone on. So the best practice side of this is going to be extremely important as we are going forward.
Again, as we are looking at the process that we are following here, we are looking to identify the issues which in regarding the transactions, looking at the same venues that we have described. Our website is a way in which organizations across the industry can submit issues that require a solution or best practice from an industry consortium.
Through this vehicle or medium that we have created, people can fill out an issue form by the work group and submit it to SNIP for consideration. Also, during the audiocasts, we are trying to leverage as much on the technology side of this as possible.
As far as the audiocasts that we are planning, we are also looking to have a period where listeners can ask questions, either about what was discussed, raise other issues about transactions discussed that may not have already been raised.
The new issues are going to be all put into our database. We have created an issues database, and as part of that a frequently asked questions component, so that the industry can be learning very quickly from these issues what has been resolved, what is still left to be resolved.
More importantly, the work being done by SNIP is also being coordinated with the industry experts from the designated standards maintenance organizations, or DSMO. We all needed some more acronyms, right? They are responsible for the transactions and code set standards. Thus, we are not writing the solutions to the issues that are not in concurrence with those organizations. Everything is in collaboration and in coordination with organizations that are already working out there. We are not looking to try to do something new, but we're trying to do something in collaboration with existing organizations, HL-7, others that are out there. It only makes sense to do that, because they are already going down that path.
We are also working as I mentioned with a lot of the organizations. Here is another number of acronyms that everybody needed to have. Everything from AFEHCT with the Association for Electronic Health Care Transactions in Chica, Utah, health information network. We are working with a number of state organizations that are out there that are working on HIPAA implementation.
We are also working with Health Care Financing Administration, Medicaid programs, vendors, clearinghouses, payors, and the list of stakeholders is growing. Our intent is to be inclusive and not exclusive. So it is very much an industry-based coalition that we are trying to put together to deal with HIPAA implementation issues.
There are five different sub work groups. In an effect to be as efficient as possible, the transactions work group has as part of these five different areas defined what each of them are going to do.
First is sequencing. Under sequencing, this work group is responsible for creating a transaction deployment plan that sequences the implementation of each transaction through the implementation process.
Next is data review. They are responsible for identifying data ambiguities and inconsistencies within the transaction implementation guides. Translations; they are focused on identifying data translation issues between data and code values used in today's environment versus what is going to be required for the HIPAA transactions. Testing, and testing is just what it is, looking at the whole testing side of this equation for all the transactions.
Then the business issues. The business side of this is focused on issues related to business problems that may evolve as a result of implementing the transactions and in particular data that might be missing from an entity to perform needed business functions where work-around or best practices solutions will be needed.
So these are the sub work groups that have been established that are part of the transactions.
We have got a set of common deliverables here. They have developed this issues database, which is a key tool for tracking and maintaining the list of issues and the questions that are related to the implementation of HIPAA transactions, security and privacy requirements. The database is also our tool for communicating recommended experiment strategies or best practices for specific issues to the industry.
We have developed a template. The template is used for collecting, tracking as well as for reporting issues by type, transaction or regulation requirement so that they can be easily searched and referenced by the industry. We are trying to create this to be very easy to use, easy to navigate through, easy to get their questions and at least having a data repository here for all of the issues. So we have got one place in the industry rather than multiple places to go to. I think that is going to be extremely important for the industry as we are going through a lot of the implementation side of this.
The entries into the issues database. We are going to capture the information, how the issue can occur, and document a resolution or suggested best practice. The sub work groups will also describe the rationale for each of the decisions.
So the point is, we're going to create white papers as a result of these issues as well that are identified, and again try to reach industry consensus regarding opinion, resolution for the industry to address and assist with implementation.
Now, in the sequencing side, I mentioned before, what we are trying to do here is to allow time for the development as well as the testing, and the migration process to the new standards. We are looking at a variety of industry issues that are related to the benefits side of the calculation. I'm going to tell you at least from our perspective, we and the group itself, SNIP, we feel that the business side of this is really what is going to drive HIPAA. Certainly as people are out there, what they are looking for is what is that return on investment, what is the ROI, what are the benefits that are associated. They want quantifiable benefits, not just anecdotal benefits.
So we are trying to come up with the case studies and the key rationale to be able to identify and be able to actually make the case that by implementing HIPAA and the components of HIPAA, there is going to be a direct bottom line savings as much as possible. We are also looking at the whole issue of inter-transaction dependencies that are related to this as well.
On the sequencing side, we have come up with a plan. This is our best guess here that we have put together, that the group has come up with, looking at each of the transactions and trying to break them down into five different groups.
This proposal that we have put together has been developed through a number of sources in the health industry, AFEHCT white papers, the North Carolina Health Information Network Communication Alliance, transactions work group, the Utah Health Information Network, and a variety of others, have been part of the process to put together this proposal on the sequencing for the transactions.
The schedule that we have put together has three different phases. There is a beta and a test pilot period, there is a health plan readiness as well as a migration completion component. So these are the three phases that we broke this out into.
The decision making rationale considered issues such as the two-year implementation requirement, as well as the industry implementation experience, logical integration of business processes and data flows, and the inter-transaction dependencies and pilot availability. All these were taken into consideration as we came up with a plan for the implementation of the transactions by the industry.
We also considered provider cost reduction benefits, transaction complexity, transaction volumes, as well as state legislation such as the New Jersey health information network. So these are all part of the process.
The industry reaction we got to it was varied. It was interesting. I would say in general we got industry-wide acceptance to the plan, but it was varied initially. As we started going through the rationale and were able to bring people through the rationale that we used, so it wasn't just something that we came up with inadvertently without any thought to it, people started to realize that the thought process that went into this made a lot of sense, and therefore that the time line for the implementation made sense to the industry. So there was logic to it. So that is how we applied it, and that is the matrix and the set of rationale that we used to come up with it.
On the data review work group, this is in conjunction with the early implementers. They are reviewing the implementation guides for each transaction in the order that was identified through the sequencing proposal. They are paying particular attention to issues related to data ambiguities and inconsistencies.
The data ambiguities exist within an implementation guide. They are normally found with allowable data values. Several of the transactions have allowable data values that seem similar, and knowing how to use one versus another may require more definition.
From an industry perspective, there may not always be agreement about what one value means versus another. The goal of SNIP is to define the best practice that the industry can agree to use.
So again, part of the issue has come down -- as we are all aware, there are a lot of different values to these, and there is still a fair amount of ambiguity. We are trying to break down the ambiguity into specific data values. The data inconsistencies, basically they are existing when one data transaction will use a different data value and another transaction will convey the same information. The data value options are sometimes not available, depending on how one transaction work group chose to define their list of available values.
In these cases, a best practice will need to be chosen for one transaction that will be workable for the other transactions. Or it may be necessary to request a list of allowable values to be modified.
So these are some of the options that we are looking at, and these are a couple of the areas that this data review sub work group is going to be addressing.
The data review sub work group is working in conjunction with X-12N. Since it is very likely that these two organizations are going to be working on similar issues, it is important that both organizations are in constant communication. So we are setting up the formal liaison mechanisms between the standards development organizations and others out there, so that we are making sure that we are consistent.
What we are trying to do is to put together a database here for the tracking mechanisms. As part of the issues and the resolution, we will have the database and tracking mechanism in place, and we are going to be -- as far as the current data issues, we are in the process of working with X-12N and others to identify these issues and putting in certainly the formal liaison between these organizations. Second, what we are trying to do is, we are trying to get as much industry consensus by using things like audiocast, webcast to provide for as much public feedback into the process as possible.
So these are some of the processes that we are going through.
As far as the translations sub work group, they are working to identify translation issues that will occur during the transitional period when not all of the transactions have been implemented. These problems are going to manifest themselves in several different ways. One example is when current data requirements used by a peer or provider, applications today do not translate well to new data requirements as defined for HIPAA.
This situation will occur during the transitional period, when some trading partners have converted while others haven't, which will necessitate translations between the new and old data values and content. The problem this creates is, one may be able to translate in one direction into old, but not to the other, old to new, due to complex one-to-many data translations. This occurs when a data element in one scheme, old or new, translates to many possible values in the other scheme, making a translation decision impossible.
Some of the translators that are out there do offer a solution, by allowing the users to hard code their translation decisions. But these hard coded translations are not always dependable, and may actually create more problems if an improper decision is made. Plus, they are very labor intensive, versus those that are table driven, so those that are hard coded are going to require a lot more maintenance. So many of the translators will not provide this function, believing that this type of data issue should be handled at the application level.
By working with the early implementers, we hope to identify these translation issues and best practices that may help to mitigate their impact. By using common mapping strategies or other tools developed by early implementers, we should be able to reduce the impact of such issues. That is really our focus, is reducing the impact.
As far as the old translation sub work group, some of the issues that they have identified today include the HICPCS and the J codes to the NDC codes as well as the taxonomy codes and national codes versus local codes. So these are some of the issues that they are addressing.
The sub work group is examining all of these issues and they are exploring possible data mapping strategies. Again, I emphasize the strategy side of this, or implementations that can help to avoid the problem. That is what we are trying to do, is to come up with some work-arounds as much as possible to avoid some of these issues that organizations are going to face on the implementation.
Another area where translation has become a problem is with the paper forms versus HIPAA translations. The issue is, will the current paper forms used today have enough data and the right content to translate into the required compliant transaction. As you may know, many providers submit paper claims. These will need to be translated into the appropriate content to do the necessary processing on the back-end systems. So there is a paper side to this as well that this work group is looking at.
As far as testing, what I can tell you is that we are providing for a common testing strategy and methodology that can be employed. We are looking at things like what to test, how to avoid redundant testing, so we are putting together the models that will assist the industry with testing, and coming up with standardized test plans that can be utilized across the industry.
We are identifying different beta testers in the industry that we can use, and we are going to learn from their experiences as well as capture issues and improve the overall test plan that can be deployed. So we are trying to put together a test plan that is comprehensive and has some commonality so we can be consistent across the industry.
What we are trying to do is to coordinate a variety of these test plans. We are also looking to link as much as possible with any certification programs that are existing out there. There are a few that are in place. There may be others that are occurring. We will look to work with those certification programs and recommend them where appropriate. We are not going to look to recommend any particular one, but we are going to look to recommend those that meet the criteria, so we don't want to be in a position where we are being exclusive as far as our recommendations. And we are trying to get as much as possible some organizations that have already done this.
So the issue is, we are trying to bring that forward into the testing process, what works, what doesn't work, and that will continue to refine the testing methodology that will be approached.
As far as the whole business issues work group, they are responsible for identifying data gaps that will prevent an organization from performing the required business functions, and where the new transaction is lacking the necessary data and the new data content codes are inadequate to satisfy the business function. So this group is working closely with X-12N as well as with the data review and translation subgroups as well to identify issues in relation to any business problems and the business issues that are going to be out there that organizations are going to need to deal with for implementation. So we see the business side of this as being extremely important going forward because, bottom line, the business is going to drive the change that is going to happen here.
We are also going to be working to develop white papers. As far as these white papers, there are going to be several different ones that we are looking to identify. One is the data content and code set. This paper is going to discuss issues such as impact of eliminating local codes, recommendations to add high volume local codes to national ANSE standards, managing version control in data standards and implementation guides, how to deal with submissions of claims with up to 999 line items, and tracking codes for HETUS. Also being considered are the needs for HIG as well as the alternative medicine codes.
Other ones that we are looking at front head-to-heads, public infrastructure funding, trading partner agreements, companion documents, and last is the direct data entry and web browser solution. This is being considerably obviously by many organization as, people are moving towards web-based solutions.
There are a lot of questions about what can or cannot be done with these solutions. This white paper is going to discuss these issues and provide industry guidance toward best practices regarding data content, transaction completeness, field lengths and so on. So these are some of the pieces that this group is going to be focusing on.
As far as the implementation side of this and implementing the transactions, it is going to require a significant effort on the part of the industry and certainly on the part of everyone, not only WIDI and SNIP, but other organizations working together in collaboration and consensus and cooperation. That is the only way to be able to make the type of headway that we expect we can make, working together.
We are early in the process and we are certain to find many data issues as we move forward. Because of this, it is essential for SNIP to have a well-established process. It is also essential that the data standards maintenance organizations process is operational as well. That needs to be in place. There are going to be many issues raised that will need resolution. Some will require resolution through that DSMO process.
SNIP transactions work group must bring together many of the issues that require solutions, recommendations and best practices that everyone can really truly implement. Sub work groups as just described as composed of many of the people from a variety of different organizations representing all facets of the health care environment.
We are encouraged by their ability and desire to work together and pursue the common goals, and it is through cooperation such as this that we can hope to accomplish the task of implementing HIPAA on a national scale.
We would encourage more organizations to get involved and ask that the members of NCVHS in your roles as industry experts and advisors as well take the message forward to get others involved. We very much appreciate Dr. Braithewaite's recent e-mail which encouraged people to get involved in the SNIP process.
Mr. Chairman and members of the committee, thank you for the opportunity to testify.
DR. LUMPKIN: Thank you. We will hear from all the panelists and then take questions. Helene, from Phoenix Systems, who participated in our hearings in July, will speak about the data gap.
DR. GUILFOY: We have to change presentations here.
DR. LUMPKIN: Yes. The data gaps of information is not currently available in provider systems, but is needed for the standard transactions. Welcome.
DR. GUILFOY: Thank you. As you said, this is a result of some outcropping of a presentation that I did back in July to the members of the subcommittee.
DR. BLAIR: Helene, could you introduce yourself to the Internet?
DR. GUILFOY: Sorry. My name is Helene Guilfoy. I am a director with Phoenix Health Systems.
This information is based on a series of readiness assessments that I performed while a member of another organization. I wanted to show you what we looked at. We looked at readiness across a series of providers. We looked at around 200 hospitals. We looked at a little over 300 different systems.
What we found is in the successive slides, and you have copies of the presentation in front of you. We looked at application security guidelines as to whether or not the institutions -- and they were primarily institutions, they were primarily hospitals -- would be available to implement certain of the security guidelines. What we looked at from the application security was, did they have user ID and password, and did their systems contain the ability to do audit trails. Very basic elementary security stuff. This is not technical security.
What we found was that eight percent of the systems that we looked at had what we called pass, in other words, they had everything. Anything you could want, they were available to do. Fifty percent were conditional, meaning that they had one but not all of the functions. Some people had the functions but didn't have them turned on. All of us are familiar with walking through a hospital and seeing the little stickies on the CRTs which have everybody's passwords on them, so that is what conditional is all about.
Thirty-four percent of the systems that we looked at need all of the functionality. They have nothing to be able to implement the application on the security side.
We looked at policies and procedures and technical security, and what we found out was, there was about an 18 percent overall compliance with the HIPAA security policies and procedures. None of this was not expected. The standards are new. We have not developed these kinds of things in health care before, certainly not at this level. So some of the stuff was not unexpected. But at any rate, 18 percent of the institutions were in overall compliance with the security policies and procedures, 30 percent had partial compliance, meaning they had pieces and parts, but not the whole thing, 52 percent of the policies and procedures were not currently addressed within the institutions that we looked at.
On the technical security side, which is way out of my realm to even understand what they looked at in this area, but this was down to the bits and bytes, down to firewalls, down to all of the things that comprised the technical security regulations. There was an 11 percent compliance rate. Hospitals are behind the eight ball on implementing technical security. We know that, it has been written about. This again is not a surprise.
When we look at transaction compliance, which is what we are really here today to talk about, I think this was the slide that got everybody thinking about what are we doing here. This information is updated as of October of this year. It is not the same as what you saw in July.
What we looked at here was data content, to be able to send an 847 institutional claim forward. About 50 percent of the data is currently stored in hospital information systems, which means that we have to go find the other 50 percent of the data, and that is what Lee was talking about -- how are we going to find it, where are we going to get it. Hospitals need a place to store it. It is just not available electronically today.
DR. FYFFE: Excuse me, Helene. I see two different colored bars.
DR. GUILFOY: I'm sorry. One is the lowest compliance rate, and the other one is the highest compliance rate. But with 837 it was about even, so there wasn't much difference in 837; you had a 50, 51 percent.
On the professional claims side, you are looking at a significant difference, where the lowest compliance rate was at 55 percent and the highest compliance -- I'm sorry, the other way around. The highest compliance, about 55 percent of the data was stored. On the low side, they didn't have 87 percent of the data in the professional claims that we looked at.
In payment and remittance, we have got much the same thing. Jeff, would it help you if I read these numbers? You have heard them before. There is basically not much information that is there --
DR. LUMPKIN: We're going live over the Internet.
DR. GUILFOY: Good point, thank you, John. On the payments and remittance side, about 85 percent of the data on the high side is missing. On the low side, we found about 58 percent of the data. For eligibility, 83 percent of the data is missing, is not currently available to the hospitals that we reviewed, and 70 percent on the lower side. So they were still missing 70 percent of the data.
DR. ZUBELDIA: I am confused here. The payment and remittance, did you look at institutions or at payors?
DR. GUILFOY: Institutions. So when the payment remittance came back to the institution, what could they store when it came back?
DR. ZUBELDIA: Providers?
DR. GUILFOY: Correct, because they are going to need that information to be able to send forward the COB claims.
As far as claims status went, we found 70 percent on the high side of the data was missing, and 51 percent on the low side was missing. So this means that in order to do claims statusing electronically we are going to have a hard time being able to submit these transactions.
Referral and certification was certainly the highest; 94 percent of the data was not there. There was no place to store the data within the existing HIS systems that we looked at.
PARTICIPANT: Just a quick question on that. Are those averages?
DR. GUILFOY: Yes, these are averages.
PARTICIPANT: Through the institutions?
DR. GUILFOY: Correct. I want to point out that looking at the transactions, this is limited to those systems that would be filing claims. So we did not look at niche systems like nursing acuity, which does have some implications for HIPAA, because it does have security and privacy implications. It does have provider identifier implications, but doesn't have claim implications. So I want to make that point, that this was a very focused analysis.
Because I wanted to know what data specifically was missing, I went through the implementation guide and grouped each one of the types of data elements that were captured to a category. The first category that I looked at was, if you are going to file a claim at all, you've got to have this data, period, end of discussion. About 73 percent compliance rate on having the data to file all claims. So that means that less than 30 percent of the data is going to have to come from somewhere. It is just not available today currently stored in their hospital systems.
For coordination of benefits, we got 84 percent of the data. For home health information, which again is not surprising, because home health is a relatively new system in health care, in being able to do things electronically, plus they collect information uniquely. But at any rate, we could only find 33 percent of the data to follow home health claim today.
Special aps is --
DR. LUMPKIN: Again, in an electronic format?
DR. GUILFOY: Correct, in an electronic format. This information is -- you made a good point, John. Hospitals collect this information. It is there, it is just not available within your computer systems, so it is not available electronically, so they can't send it electronically. That is the distinction that we need to make here. That content is there. If somebody wants to go review the patient's chart, they can get all that information. It is just not available electronically.
DR. ZUBELDIA: What you are saying here is, it is not that 33 percent of the hospitals do not have the data, it is that 33 percent of the data is missing.
DR. GUILFOY: Correct, an average of 33 percent of the data is missing.
DR. ZUBELDIA: So the compliance rate would be zero.
DR. GUILFOY: Correct.
DR. BLAIR: Or 33 percent of the data is not available in electronic form..
DR. ZUBELDIA: But the compliance rate would be zero, because without the data they can't file the claims.
DR. GUILFOY: That's correct. Going down to the special applications, what that is all about is, there was a category within the implementation guides that I couldn't categorize. That was stuff like auto accidents, demonstration projects, those kinds of things that are special kinds of applications that the institutions would need to provide. Again, we only had 17 percent of the data.
For Medicaid -- and I want to point out that the one that says all claims, they are always going to need to have all claims, regardless of what type of claim they are filing, whether they are filing a home health claim or an in-patient claim or an ambulatory care claim; they are still going to have to have that information. But in order to follow Medicare, what we found out was that about 70 percent of the data as it is constructed within the implementation guide is not there. That is the distinction, in the implementation guide the information is not there.
DR. GREENBERG: This is percent compliance, so is that 17 percent were complaint?
DR. GUILFOY: Yes, 17 percent of the data is there.
DR. LUMPKIN: In electronic form.
PARTICIPANT: Zero compliance.
DR. GREENBERG: Eighty percent isn't there.
DR. GUILFOY: Right, precisely. If you are filing an in-patient claim only, we have got 67 percent of the data. So those of us that have been around this world for a long time in hospitals, specifically health care, it is not surprising that we have the in-patient data. If I were to break this out by ambulatory care, the scale would go down again, because it is relatively recent that we are capturing the information to follow it electronically.
Then the ifs. What this is, if it is needed, if it is necessary. These are the things that people always come back and say, but I don't need to have all of that information. Well, it is situational, is the phrase that I always get back. It is situational data. Yes, but if the situation is there, you've got to have it. So if you are filing a claim and this information is needed, you've got to be able to provide that information electronically.
As far as identifiers go, and we only looked at the two that currently have an NPRM out, all hospitals are collecting some type of identifier electronically. When I say all hospitals, I'm talking about health information systems. Those currently include this information, but the applications will not be able to support the changed identifier field. So when we go to a 10-digit provider number, 34 percent of the HIS systems that are currently out there will be able to store the new size and format.
What normally we are finding in most hospital information systems -- and we are going back now to across the board. This is not specifically those business office kinds of applications, most systems store between a three and a six digit provider number. So to go to a 10-digit provider number, the system has to be able to capture that information.
As far as the national employer ID goes, 42 percent will be able to capture the new nine-digit EIN.
As far as medical data code sets go, currently we are going to be using ICD-9CM, CPT-4 and HICPCS, but the mandate is to go to a single procedure code. When we go to a single procedure code, the information that I have from this group -- I feel like Kathleen, I've been here for nine and a half years. If we go to ICD-10CM, which is going to be a larger sized field, between 25 and 43 percent of the systems will be able to accommodate that code. If we go to ICD-10 PCS because we are currently using CPTs and HICPCS, which is a five-digit code, we are going to be going to a seven-digit code, 32 to 75 percent of the systems will be able to store this.
Now, when we are looking at sequencing of how we need to be able to do these implementations, the original projection on going to ICD-10 CM was two years out. I don't know if that date is still valid -- Marjorie, you would know that better than I.
DR. GREENBERG: There actually is no definite date.
DR. GUILFOY: Okay. The point is that if you've got to go in and touch all of these systems and you've got to touch them in these critical places, touch them once. Don't go back in two years or even four years, and have to go through this entire process all over again.
So when we are looking at this, we need to be able to plan to be able to maximize our resources.
DR. GREENBERG: Plan for ICD-10 CM.
DR. GUILFOY: Yes. In fact, that is what I was advising clients to do, is plan for ICD-10.
Now, I just want to point out this table. Some of you that have heard me present before have seen this in the past. I went out and looked at the non-medical code sets, because there is a standardization effort within HIPAA to standardize the non-medical code sets. This happens to be an example of the individual relationship codes.
If you look at this, what we are currently transmitting now is the UB-92, and we will be moving to the X-12. You notice her that there is a distinct difference between what we current transmit on UB-92 and what we currently transmit, and I would point out, receive on the X-12. The spouse is coded on the UB-92 with a two; on the X-12 it will be coded with a one. But the curious thing is that self is currently coded as a one, it will be coded as an 18.
There is an old adage in computer systems, if it ain't broke, don't fix it. I'm not sure why we did this. But nonetheless, this is going to be a major issue. We can translate this information, sure. You put a program between the program that is collecting it and the program that is sending it, and you switch it around and you send it off that way. But remember that this information is going to be coming back to us also, so we've got to translate it on the way back. Then we've got to translate it going to the lab systems, then we've got to translate it going everyplace under the sun.
So my advice to clients is, collect it right the first time. Don't do the translations on it. But I want to point out to you that the people that collect this information are usually at the entry level position. They are your admitting clerks, they are your registration clerks in the ER, they are under stress. They have been doing this for quite some time, so they do what we call heads-on keypunching. They don't even pay any attention. Are you married? Yes. Bing, they know exactly what to code. Now we are asking them to change those codes.
This may be something that we look at in our translations, in our sequencing of how we go through our process, but nonetheless it is something that we do need to address.
I want to point out that the MDS, the HCFA MDS, the codes are yet different, so they are transmitted, they are sent in to HCFA yet again in a different code set than what is either collected on UB or on the X-12, and the HL-7 has yet again a different code set. So even though we try to standardize our stuff, we're still different.
The problem is, the NDC codes as collected currently in hospitals are collected within pharmacy systems, which are usually stand-alone systems. Even if they are integrated, the NDC information remains in the pharmacy. It doesn't leave the pharmacy and come over to the billing system.
So number one, we have to find a way to get it from pharmacy to the billing system so that it can then subsequently be back-up information for the patient's bill, but even more importantly, you will see this second bullet here. The storage of the NDC code will require 11 positions, or 10 if we drop that leading zero. HICPCS, which are the J codes, right now are five positions long, so again we have this -- trying to put larger bits of information into a field that was trying to hold smaller bits of information. So we have not only the process to get the information from point A to point B, but we also have a mechanism to be able to store it so that we can constantly retrieve it.
The other bullet that is here is that the maintenance of the code in the pharmacy system is neither consistent nor timely. What happens with that NDC code is, it is built into the pharmacy system so that the pharmacy can build their monographs against that NDC number. They build allergy codes against that NDC number. They build allergies, they build adverse reactions, et cetera. All of that goes against that NDC code.
They build that generally once. The existing NDC code or the code where they may change a drug manufacturer, that code is usually not updated. There is not staff in the pharmacy to update it, there is not an importance enough for it to be updated within the pharmacy system. I don't want to leave anyone with the impression that the information is not retrievable. So if there was a drug recall, the hospitals would be able to know who had gotten those drugs. The point is that within the pharmacy system, to be able to look at adverse reactions, they are going by what they originally build that NDC code with. So if they change manufacturers, if they are not able to get the drug from the same manufacturer for an interim period, they don't go back and change this number.
So we have a problem with this information. Even if we could get it from point A to point B and we had a place to store it, is it reliable enough.
How do we get there? We know where we are, now how do we get there? As Lee said, major coordination between the providers, the vendors and the payors. There has got to be some talking here. There has got to be people saying, from the provider side, we would like to implement this, because this is where we are going to be able to get our biggest payback first off. That was the slide that Lee had up there with the sequencing, but even though they can say that, is the payor ready to implement those kinds of transactions and are the vendors able to give us the information so that we can store this information. So there is a major, major coordination effort that needs to take place between these three different entities within health care.
Providers need to evaluate where they are now, and determine what changes they need to make. So they need to do readiness assessment, they need to do a risk assessment to determine where their problems are, what they can implement, what they can't. They need to determine where they will get their biggest payback.
This was the slide that Lee had, where they have got the timetable out there, where the ones of the transactions, they would be able to implement first off and moving through some sort of a planned implementation schedule. They also need to work with the vendors to meet that time line. It is all well and good that they work with the payors and say, we want to implement the eligibility checking, but if the vendor does not give them the software to be able to capture that information, to be able to file an eligibility checking transaction, then it is all for naught.
HIPAA is going to impact every single component of health care today. In the short term, we have got a tremendous job ahead of us. But in the long term, it would really be nice to be able to program this transaction once and then not have to go through as we bring on different providers or different payors, different types of transactions. So in the long term we are expecting this to have a sizeable payoff.
Thank you.
DR. LUMPKIN: Thank you. Our last speaker is Catherine Schulten of NEON, which is New Era of Networks. She is going to talk about the discrepancies between the 1500, the out patient billing form, and the X-12 837.
DR. SCHULTEN: Right, and I am also going to talk a little bit about the UB form as well.
My name is Catherine Schulten. I work for a vendor organization called New Era of Network. I am here on behalf of AFHCT. I co-chair a work group called ASPIRE, administrative simplification print image research effort. ASPIRE is a lot easier. I also work with various work groups for X-12N, HL-6, WIDI, SNIP. I try to sit in on all of the transaction work groups there.
My company is one of those companies that has translators and application integration technology, so I view this maybe a little bit different.
ASPIRE came to be because the NUCC asked AFECHT if we would take on a demonstration project to look at the data content gaps that reside between the HCFA 1500 form and the 837. This was their prime concern: does the HCFA 1500 paper claim form contain all the necessary and required data needed to create a HIPAA compliant version 4010 837 professional claim. The way we set out to prove or disprove this was to have a demonstration project between various project participants, providers, payors and clearinghouses.
The HCFA 1500 form, and it is in your pack if you all want to refresh your memory on that form, I'm sure many of you have seen it, the HCFA 1500 paper form contains a subset of data that is present on the 837. It also contains some data that is not present on the 837. It is a paper form that can be turned into an electronic print image or a flat file.
The UB-92, otherwise known as the HCFA 1450, same thing. It contains a subset of data that is present on the 837-I or institutional, and it also contains some data that is not present on the 837-I.
So how do we go from the 1500 or the UB to that electronic transaction, and can we successfully translate from one format to the other. That is our project.
I am going to categorize some of the data gaps that we have found. One is the obvious gap, the gap between mandatory data content. It is just not on the form. There is also other gaps. I call them data specificity, ambiguity within data element crosswalks and then the non-standard use of the paper claim form. I am going to go over each of these and give you examples of what I am talking about. Then I'm going to also talk about the solutions, or how you get to the work-around to overcome those data content gaps. You do that through writing precise implementation guides, creating industry wide accepted crosswalks, creating trading partner agreements that are specific, and data enrichment.
So here are some examples of mandatory data elements that don't reside on a HCFA 1500. Number one is a taxonomy code. These are just examples, there are others. Another one is payor responsibility sequence.
The provider taxonomy code gap, otherwise known as the provider specialty code, is a 10-digit code. It explains what that provider's specialty is, for example, a family practitioner uses this code, physician not otherwise specified uses that code. That code does not have a place to reside on the HCFA 1500.
Another data content gap is in payor responsibility sequence. How do we tell the insurance carrier that they are the primary, secondary or tertiary payor. If you look very closely at the HCFA form, and this came as a surprise to me, I always thought it was on there, you don't indicate that. So how does that payor know what order they fall into in the payment sequence?
In other words, taxonomy codes and payor sequence indicator codes do not reside on the HCFA 1500. That is an example of a data content gap.
Another gap exists with ambiguity within data content crosswalks. The example I have here, and we all seem to use the same example, is the HCFA 1500 provides a checkbox to indicate self, spouse, child or other. The 837 professional lists 25 different relationships to the insured. How do you go from four to 25?
Here is an example that I gage you. It is a one to many. Obviously, child resides on the HCFA 1500, but look at all of these different associations that that child could have on the 837. It could be a direct child to child, and that would be the simplest mapping, but it could be child where the insured has no financial responsibility, stepson, stepdaughter, emancipated minor, adopted child, foster child. All of these are very specific codes for a child.
There is also ambiguity within data content crosswalks, and now we are getting into the J code and NDC code issue. There is a typo on your handout. I meant to write on the last bullet point here that the HICPCS J codes for drugs are no longer supported per the 837 HIPAA implementation guide. It said, NDC codes are require. If you look at your UB form, it has a box in there for HICPCS codes. It doesn't reference NDC codes.
We also have issues with data specificity. The 837 professional claim makes very clear distinctions between the bill to, paid to and rendering provider. The HCFA 1500 does not. If you look at your HCFA 1500 form, it just says provider and doesn't say is this the bill to, pay to or rendering provider.
Also in the 837, it is very specific as to what type of entity is that, is it an individual or is it an organization. So a provider could be Dr. John Smith or a provider could be, in this case, provider could be best billing service. These are two different things. One is a person and one is an entity. Your HCFA 1500 doesn't support that, it doesn't explain what that entity is.
Another big issue has to do with the non-standard use of the paper claim format. The HCFA 1500 and the UB paper claim formats contain fields which can be used for a variety of purposes.
An example of this is, if you look on your HCFA 1500, box 19 says reserved for local use. UB-92 has a similar field, field two, it is an untitled field, and it is assigned for use by each individual state. So a variety of data can reside in these boxes. You have CLIA numbers, mammography numbers, procedure descriptors, et cetera. This is driven by the state and by the payor. We have a variety of data that can reside in these unnamed boxes.
There is hope, however. There are solutions and work-arounds for overcoming these data gaps. One example is what UHIN is doing, Utah Health Information Network. They are going to assist their trading partners with issues surrounding missing data and data ambiguity by providing instructions on how to complete the HCFA 1500.
So for example, they will say in box 25 of the HCFA 1500 when you put a provider's name in there, that is the paid to provider tax ID. That is what goes there. If you put anything else in there, then you would be in error in using your HCFA 1500. So we can't redesign at this late date the 837 guides, but we can provide further clarification on the HCFA 1500 and UB instructions.
Another work-around is to produce industry wide accepted crosswalks. The publication of the final HIPAA transaction implementation guides has initiated the development of gap analyses they are going on all over the country, and transaction crosswalks throughout the industry. An opportunity exists to share these crosswalks and provide best practices to aid in their development.
WIDI SNIP, the translations and business issues work group, would be the prime area where that type of work would be done. We can come up with these industry accepted crosswalks, and that is where the industry can reference to find out how do I map from a child on the HCFA 1500 to what value on the 837.
Another solution is trading partner agreement. Detailed trading partner agreements between the provider and in this case a clearinghouse can alleviate some of the data content gaps. So for example that taxonomy code issue that I was mentioning. It is not on the HCFA 1500, but how do we get it onto the 837. Well, the provider could have told the clearinghouse, whenever Dr. John Smith's claim comes in, this is the taxonomy code you need to use for him, so that data would reside and the clearinghouse would know how to fill that in.
The provider can also define for the clearinghouse what they are putting in those local use fields, so that the clearinghouse knows what is sitting there.
Another solution is, practice management vendors can assist the provider by augmenting or providing data enrichment. This is an example that I came up with; I'm not sure this is being done anywhere. But instead of just placing an X in box one of the HCFA form to indicate the claim type, what if you placed a one, two or three in one of those boxes, and in that way you are indicating this is the primary payor, you are the secondary payor. This is called data enrichment.
A little bit of background on the ASPIRE projects. You know where we are right now. We have completed and posted onto the AFEHCT website, which is afehct.org, an analysis of the HCFA 1500 crosswalk, so it is available there for anyone to go and pick up. We are in the midst of completing our demonstration phase of the project. We hope to have that done by the end of the year.
The UB analysis has just begun. It started up in October, and we hope to also have the analysis portion of it done by the end of the year.
These are the groups that are participating in the demonstration project. Some of these companies, Gateway EDI, Persay Technologies, EDS, Web MD, so we have some large participants, are companies who are working on this with us.
Our next step is to finish the gathering of results, analyze them and publicize them on the AFEHCT website. Hopefully from this analysis we can determine best practices.
These are the co-chairs of this work group, myself, Larry Watkins of Persay Technologies and Tim Fogarty of Gateway EDI.
I thank you for your time.
DR. LUMPKIN: Thank you. I think at this point, what we are going to do is, we will try to run until 2:30. Then we will adjourn. The standards committee will be in this room, the populations committee will be in Room 405. So if there are additional questions during the transition period --
DR. COHN: I was going to say, we have the first half an hour of the subcommittee as an open period for us to meet with discussions. So we do have a little bit of leeway here, because it doesn't sound like there is going to be enough time otherwise for questions.
DR. LUMPKIN: So we can take questions, preferably from people who are planning on going to the population subcommittee.
I just have one question. Actually, I have a bunch of questions, but I have really one pressing question for Lee. You listed in one of your slides, there was a group whose initials were MEHUG.
DR. BARRETT: The Minnesota Health Users Group. I know, John, I can't keep up with the acronyms, either.
DR. LUMPKIN: They sound like a very friendly group.
DR. BARRETT: They are.
DR. LUMPKIN: But given the governor, a hug may not necessarily be a positive thing.
DR. ROTHSTEIN: I want to ask a question that is slightly off of your presentations, but one that is I think important nonetheless.
One of the main privacy problems that we have is that any release requesting medical information, the hospital or the health care provider responds by sending the entire file, because it is not feasible to break it down. Is anything that you are working on, or that you know of, going to facilitate responding to requests for more limited information in a cost effective, easy way for the maintainers of the record?
So if I am a life insurance company or if I am an employer, let's say, and I get a release for records pertaining to some lung condition or leg condition that has been treated over a period of five years, is anything you are going to be working on going to allow the provider to press one button or a series of buttons, and get that information without sending psychiatric records and everything else?
DR. GUILFOY: It's my impression, and everybody else jump in, but I think that is going to be addressed by the claims attachments transactions. There is going to be specific information developed that will be transmitted when a third party would ask for additional information that would go onto a claim.
DR. ROTHSTEIN: This has nothing to do with claims. This is, I am an employee and my company wants to know if after my knee surgery I am still able to climb telephone poles, and they get me to sign a release of my own medical records. And right now, my doctor, my hospital, whatever, they will send everything.
I want to know -- maybe you don't have the answer -- whether it is currently or in the future feasible for you to segregate information so that everything is not sent.
DR. BARRETT: Let me take a shot at it. What I will you is that the SNIP security and privacy work group is going to be looking at some of those issues.
It is certainly feasible to do. In answer to one of your questions, it is absolutely feasible to do. Can we get to a single keystroke? Not sure, but can we get to the point where we determine that based upon the request, we know that only a certain subset of information needs to be segmented out and sent?
I think the answer is yes. We can get to the point, similar to what we are doing today, we are getting to the point with some of the HIPAA provisions of being able to determine access rights. I think we can also get to the point of determining, based upon an individual record and a circumstance, what level of information needs to be sent.
My answer to you would be yes, I think it is feasible, yes, I think it is starting to be worked on now, and our hope would be that over a short period of time, we would be able to get to the point as we are doing with access rights, for the security side we will be able to get down to determining what level of information also needs to be sent.
I don't know if that answers your question.
DR. ROTHSTEIN: Yes, thank you.
DR. GUILFOY: I think we need to go one step further though on that. We are assuming that that information -- perhaps we are assuming that because we are talking about HIPAA and privacy -- we are assuming that that information ever was electronic. I think that what needs to be considered is that a good deal of that information currently is not stored electronically, certainly not in the physician's office, it is not stored electronically, nor was it ever stored electronically. So therefore, it would not come under the constraints of the existing privacy proposal.
DR. ROTHSTEIN: And it raises the issue of in what form the records are maintained in the first place, in what form they are requested, as well as what form they are disclosed in. So it is much more complicated a problem.
DR. LUMPKIN: I would like to suggest that this time that there is a document that does address that. It is the NHII document that we produced. I think it really gets to some of the things that are further down the road. Obviously, to the extent that we can get the whole medical record on an electronic format, then it is much easer for an individual to control what part of it goes, because the work load -- as you suggest, it is much easier if I am a physician to tell my clerk, copy the whole thing, than as a physician to go through the record and say, I'm going to segregate out parts, send this, don't send that.
So I think we really need to address that in some of our other work in the committee.
At this time, looking at the people who have requested, Kathleen and Kepa, I am going to suggest that we split. But before we do that, Marjorie has a housekeeping announcement.
(Remarks off the record.)
(Whereupon, the meeting was adjourned.)