[This Transcript is Unedited]
THE NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Hubert H. Humphrey Building
200 Independence Avenue
Washington, D.C.
MR. COHN: Good morning. I want to call the meeting to order. This is the first day of two days of meetings of the National Committee on Vital and Health Statistics.
The national committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.
I am Simon Cohn, the associate executive director for health information policy for Kaiser Permanente, and chair of the committee.
I want to welcome the committee members, HHS staff, and others here in person. Of course, I want to welcome those listening in on the internet, and remind everyone, as always, to speak clearly and precisely into the microphone, so those on the internet can hear you.
With that, let's have introductions around the table and then around the room. After that, I will make some brief remarks and then we will get into agenda review.
As we do the introductions, for those on the national committee, I would ask, if you have any conflicts of interest related to any issues coming before us today, would you so publicly indicate during your introduction.
MS. GREENBERG: I am Marjorie Greenberg from the National Center for Health Statistics, CDC, and executive secretary to the committee.
MS. WARREN: I am Judy Warren, University of Kansas School of Nursing, member of the committee, and I am not aware of any conflicts.
MR. HOUSTON: I am John Houston. I am with the University of Pittsburgh Medical Center. I am a member of the committee and I have no conflicts.
MR. REYNOLDS: I am Harry Reynolds, Blue Cross Blue Shield of North Carolina, a member of the committee and no conflicts.
MR. ROTHSTEIN: I am Mark Rothstein from the University of Louisville School of Medicine, a member of the committee. I have no conflicts.
MR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee, no conflicts.
MR. VIGILANTE: Kevin Vigilante, Booz-Allen Hamilton, no conflicts.
MR. LOCALIO: Russell Localio, University of Pennsylvania School of Medicine, and no conflicts.
MS. MC ANDREW: Susan McAndrew, Office of Civil Rights, privacy liaison for the subcommittee for privacy and confidentiality.
MS. TRUDEL: Karen Trudel, Center for Medicare and Medicaid Services, liaison to the committee.
MS. MC CALL: Carol McCall with Humana, no known conflicts.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, no conflicts.
MR. WILLIAM SCANLON: Bill Scanlon, Health Policy R&D, member of the committee, and no conflicts.
MS. CARR: Justine Carr, member of the committee, Beth Israel Deaconess Medical Center, no conflicts.
MR. HUFF: Stan Huff, Intermountain Healthcare and the University of Utah in Salt Lake City, and no conflicts.
MR. FITZMAURICE: Michael Fitzmaurice, Agency for Health Care Research and Quality, liaison to the full committee, staff to the subcommittee on standards and security.
MR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the full committee.
MR. BLAIR: Jeff Blair, Medical Records Institute, member of the committee. I am not aware of any conflicts.
MR. JIM SCANLON: Good morning. I am Jim Scanlon. I am with the HHS Office of Planning and Evaluation, and I am the executive staff director for the full committee.
MS. SQUIRE: Marietta Squire. I am the CDC National Center for Health Statistics, and I am staff to the committee.
MR. TROUTMAN: Allen Troutman representing the FHA program office.
MS. WOOLEY: Sherry Wooley RSO(?).
MR. RITEMAN: I am Adam Riteman(?), intern in Dr. Brailer's office.
MS. JONES: Katherine Jones, CDC, National Center for Health Statistics and staff to the committee.
MS. BALINTOSKY: Danielle Balintosky(?), the National Journal.
MS. MOIRER: Gwyneth Moirer(?), SPH intern at National Center for Health Statistics.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, committee staff.
MS. ROGERS: Ann Rogers, writing and editorial consultant, and I worked on the populations report.
MR. KYLE: Frank Kyle, American Dental Association.
MR. LEE: Dr. Tad Lee(?) newly appointed senior health information privacy outreach specialist, Office for Civil Rights and Health and Human Services.
MR. DICKMAN: Barry Dickman, Department of Veterans Affairs, Veterans Health Administration.
MS. FRAZIER: Judy Frazier, American Optometric Association.
MS. BURKE-BEEBE: Suzie Beebe, ASPE.
MS. DICKERSON: Audrey Dickerson, HMS.
MS. SOROS: Nancy Soros(?), Government Health IT.
MS. GRANTHON: Miryam Granthon with the Office of Minority Health and staff to the populations committee.
MR. SHEEN: I am Tony Sheen(?) with the consulting firm, Point in Care Partners.
MR. ALFANO: Bill Alfano(?), Blue Cross Blue Shield Association.
MS. NOLTE: Emily Nolte, National Opinion Research Center.
MR. SOROS: Jim Soros, ACMS.
MR. RUDDY: Dan Ruddy, American Health Information Management Association.
MR. COHN: I want to welcome everyone. As a comment, before we do a general review, I just want to make a couple of comments about the activities of the last several months.
I am, of course, reminded that at our March meeting I observed that this will be an interesting and, I think I will add an exciting time for the full committee.
As I think as we reflect on things, many of our recommendations, including the need for increased HHS leadership in health information technology moving us toward the NHII are coming to pass.
Since our last meeting, Secretary Leavitt has unveiled his 500 day plan, which includes really as a centerpiece the unveiling of the next phase of the HHS health IT strategy.
This phase will also unfold over the next 500 days and include convening leaders to coordinate public and private health IT efforts, developing strategies, contracting for studies, funding prototypes and demonstrations to enable health IT.
I know David Brailer will be talking about this later when he meets with us this afternoon but, from my view, really what we are talking about is an acceleration of activities already underway that we have been sort of shepherding and really speak of, I think, our vision from our documentation, information for health, a strategy for building the NHII, which we published in 2002.
Really, what we are talking about is beginning to use health IT to help bring health care into the information age and transform the health care system and improve the health of all Americans. I think this is something we can be very excited about, and we support his efforts.
The issue I, and the executive subcommittee, have been working on really how we can best support the secretary and the department going forward in what I would describe as these changing and really accelerated environments.
The executive subcommittee, with Jim Scanlon, Marjorie Greenberg, Debbie Jackson's help, and a number of others of you who have helped provide some input into our thoughts, have helped assist me with preparing briefing materials and, more important, thinking through how we could help and provide leadership and value in this new environment.
Indeed, because of our content expertise and experience in this whole area, indeed, we really laid the framework for a lot of what is going to be coming forward. We have a lot to contribute.
In addition, we have a reputation for strategic focus, as well as having an open collaborative process and the ability to deliver timely, thoughtful, practical recommendations that are supported by both the public and private sectors.
Yesterday I met with the Secretary to brief him on the NCVHS and discuss ways we may be able to assist in going forward.
I want to share with you that it was a very productive and positive meeting. The Secretary is very interested, as you know, in interoperable HIT, and expressed his appreciation for our work, which has really laid the foundation for these next step initiatives.
While clearly these new initiatives are just unfolding, I think it is safe to say that we will play a significant role in the next phase of the HHS health IT strategy going forward.
As I have commented, this is an exciting time, and I want to acknowledge all of you for your hard work, I think your dedication to the task and, probably most important, your commitment to an improved health care system and, of course, a better America which will result from that.
Again, thank you for all of your help, and I think we will move forward. We will talk about this, obviously, as the day goes on and tomorrow, as we look at our various work plans and discussions of subcommittees and all of that.
I think in front of you, you also have briefing materials that we shared with the Secretary that I thought you would all find interesting, both a transmittal letter and a two-page letter that, once again, was produced with a lot of your assistance.
Now, on another note, since our last meeting, I have attended a meeting of the National Center for Health Statistics board of scientific counselors.
They are a very impressive group ably led by June O'Neill. who has just arrived. So, welcome. I am very pleased that June has decided to become the NCHS liaison representative to the NCVHS, and obviously I want to welcome you.
I am also, on the advice of Don Steinwachs, appointing Bill Scanlon to be our liaison representative to the board of scientific counselors.
Bill, I want to thank you. I know you have a very busy schedule, to put it mildly, and I am really delighted that you are willing to take on this new responsibility. So, thank you.
MR. BILL SCANLON: I am looking forward to it.
MR. COHN: Now, with all of that, let's move into the agenda review, and we will talk, I think, further tomorrow about executive subcommittee actions, and the results of the first meeting we had, and then talk about our plans for the upcoming off-site.
This morning we begin with an update from the department, Jim Scanlon from ASPE, Karen Trudel from CMS, and Susan McAndrew from OCR. Obviously, thank you for joining us.
Then we will have an update from June O'Neill and Ed Sondik, if he is here, from the board of scientific counselors.
After the break, we will begin discussions of the population report. I want to thank Vicky Mays -- is Vicky Mays here today -- Vicky Mays, a former member, for her leadership and persistence in completing this report, as well as, obviously, Don Steinwachs, the chair of the population subcommittee, for helping move this to a place where it can come before us for action at this meeting. So, thank you.
This will be followed by a discussion of the NCVHS 2003-2004 report, and we will talk a little more about that when we get to that report.
Now, following lunch, we are pleased to have David Brailer, the national health information technology coordinator, joining us for an update on current initiatives and issues, and I am sure we will talk some more about all the various activities going on.
This will be followed by a briefing on the federal health care architecture, by Leroy Jones of ONCHIT.
The final presentation and discussion before the full committee adjourns today will be by the Commission on Systemic Interoperability.
We are very pleased to have Scott Wallace, chair of the commission, joining us to update us on the progress of that activity.
I should, I guess, disclose, although I don't think it is necessary for full disclosure, I actually am a member of that commission, but I will certainly defer to the chair, and I don't think there is any conflict of interest associated with that.
Now, after adjourning the plenary session, we are going to have two subcommittee and work group meetings, which we will discuss as we move through the agenda today.
I just want to remind everybody -- and I will say this a couple of times -- tomorrow's subcommittees and work groups meet at 8:00 a.m. and, more important, the full committee is meeting an hour earlier than usual, which is 9:00 a.m., and we will sort of talk about how that day will progress, as I said, before we break today. Marjorie, would you like to mention the dinner? Please.
MS. GREENBERG: We will have our dinner social, as we always do on the first night, and we are going to be going to Rosa Mexicano, which the executive subcommittee did a site visit, a pilot test there, and it was very satisfactory.
I believe it is right at the Gallery Place metro stop, is it 7th and I?. It is right across from the MCI Center.
The people who know are not here at the moment -- 7th and F. Could I just have a show of hands of who is planning to join us?
[Dinner logistics discussed.]
MR. COHN: With that, why don't we move into the update from the department and I think, Jim, we will have you lead of, please.
Agenda Item: Department Updates. Data Council.
MR. JIM SCANLON: Thank you, Simon, and good morning, everyone. A number of things, as Simon indicated, have occurred since we met in March, I believe it was, and I don't want to steal David Brailer's thunder, but I will just remind everyone of the Secretary's announcement on June 6 of the health IT strategy and initiative.
Then I will talk about some of the department-wide data and statistical policy activities, including some focus on population health statistics, at the data council and among our agencies.
At any rate, let me start with the Secretary's announcement. On June 6, you will all remember -- I think you have press releases and background material in your briefing book -- the Secretary announced his plan and strategy for moving forward on health information technology to transform and support improvements in the health care system.
There were several elements of that. I will only mention them briefly. I think, as Simon indicated, the cornerstone of the effort is the formation of basically an advisory committee.
I sort of think of it as captains of the health industry, 17 members who that would be called the American Health Information Community.
HHS would appoint the 17 members. The secretary himself has indicated that he wanted to chair the group itself.
Interestingly, it is chartered for two years, and it could be renewed for additional years, but the goal, I believe, is to have this transform into a public private kind of an entity.
I don't know exactly what the governance would be, but some sort of a public private entity down the road, and certainly within five years.
I think we have -- Simon and I were discussing this -- I think we have all indications -- I hate to make predictions -- but we have every indication that the NCVHS would be formally involved with that committee in some specific ways. So, we hope to have a very solid relationship.
Much of this work, as you know, builds on the previous work of the NCVHS, and the department. It seems like timing is everything.
Many of the ideas that we are seeing bearing fruit right now, you will remember, were kind of initially incubated and thought out through the NCVHS data council and other groups within the department back in the early 2000s but timing, again, I think is everything.
So, we really are entering kind of a new stage of the more specificity and some specific directions in terms of the health information technology initiative in the United States.
I will leave the rest of the details to Dr. Brailer, who will be talking more about this later today. Let me turn over to the area of population health statistics.
Actually, it is more than just health statistics. It is health and human services and economic statistics as well.
Within HHS, as you know, we have the data council periodically reviews where we are with all of our major health statistics systems, our major surveys, and so on, and we are just completing that process.
Simon, actually, attended some of the data council meetings where we went through this, and we are entering the next budget planning year, fiscal year 2007.
So, I think budgets are going to be tight overall. I think you all know that, but we are not looking at any big increases, any big initiatives, for the most part.
It looks like, at least, the initial focus is that most of our major statistical systems and data systems are being supported and protected, at least, at the current services levels, which is a goal, which is certainly the first goal, we always have, to nurture and protect our basic statistical systems.
There are some improvements planned, although, again, there are no major initiatives, that we can identify so far, although again I will caution you, we are still looking at the budgets in detail, and there are always surprises, but in general I think that is the theme we are seeing.
The data council will be sending some recommendations next month, probably, early, to the departmental leadership on themes for the 2007 budget.
In the population statistics area, the data council, over the past probably eight months has identified about five areas for what we are calling data improvements and enhancements.
In each of these areas, we started some initial assessments and, in some areas, we have actually made some improvements, put some initial investments in, or had some subsequent discussions about how we can improve the area. Let me mention those to you this morning.
The first area -- this is not in priority order -- has to deal with prescription drug data, prescription drug utilization and expenditure data.
We have focused on some of this in association with the medicare part D benefits, but some of it more broadly.
We are trying to look at needs for program and policy data in those areas, as well as research needs and statistical data needs there.
We have a number of enhancements that are already underway. For example, we have put some additional resources into the medicare current beneficiary survey, and we have some analyses planned from some of the other surveys.
This is actually prescription drugs per se. Not many of our surveys actually get that much detail, but we do have some.
A second area -- this is certainly an interest of my boss, Mike O'Grady and others -- is national health insurance data, particularly health insurance coverage data and the uninsured.
As you know, we have about three or four surveys that each give you different dimensions and estimates of the health insurance coverage and related issues, and most of them have other focuses as well.
There is an interest now in seeing how we can understand some of the differences in the estimates among those four surveys, and reconcile differences, or at least understand why they differ, and then to make some improvements in terms of measurement and coordination generally.
For example, we are planning a web site, where we will probably pull together all of the data on health insurance here in HHS and in census. So, it will just make it easier for folks to know when the data is coming, what it means, how to interpret it and so on. So, that is a second area.
A third area is the whole state data area. Here, this has always been a difficult area. It seems it is -- obviously, priority is always on national data here at the federal level, but there is interest in improving, where we can, state data on health care access, health care utilization, and health insurance. So, there we will be looking at how we can improve that.
Often this is through over-sampling or extensions of our national surveys. In some cases we allow states, encourage states, to buy into our national surveys. California, for example, did that, and now they have their own California health survey. A couple of areas there where we are trying to do this.
Again, we are trying to do this in a budget year where there is not a lot of new money available. So, it is going to require some refocusing and some focus on what we can do within budget constraints.
The fourth area is, again, improving data on income and assets. Many of our surveys collect this kind of information.
We don't make -- in HHS we are not the primary statistics agency for making estimates of income and assets, obviously, but income and assets are a major policy variable for most of the other programs we do deal with.
So, we are looking at, what is the nature of that kind of data we collect now in our major surveys, and then how do they compare, what is the quality of that data, and then what are some ideas for moving forward with enhancements.
Then the final area is certainly an area that the full committee has been very much interested in. We are looking at, again within the budget constraints, how can we move forward in the area of race and ethnicity data to eliminate race and ethnicity disparities in health care.
There we are looking at, again, what we can do analytically, what we can do in terms of dissemination and web sites, and then what we can do in terms of some improvements that we have had in the pipeline.
For example, the health interview survey that you are all familiar with, in 2006 will be undergoing a major redesign.
Actually, it turns out that the redesign substantially improves the capability to make some estimates for some of the race and ethnic populations and subpopulations.
So, we are looking at what we can do there and sort of as resources permit, what kind of actual improvements in data collection we can look at.
Just briefly, our privacy and confidentiality committee under the data council, again, is active. I think we are going to have them look at -- this will probably be an internal study, but they will be looking at best practices, current and best practices, for confidentiality and research and statistics. Most of our agencies have statutes and other policies that they employ.
Finally, in my office, under the data council, we have initiated a study to look at the area of data standards, but it is data collection standards and measurement standards.
For example, in our surveys and our surveillance systems, in our research activities, what is the nature of the standards that exist.
You are all familiar with them. There are standards for asking race ethnicity questions. There are standards for collecting age data. There are standards for collecting sex and gender data. There are standard classification systems for diagnoses, for procedures, and so on.
So, we have a contractor who will be looking at what do we now do in our surveys, in our major surveys, what are the potential opportunities to incorporate further standardization and comparability into our surveys, and then to make some recommendations and opportunities for integration. I will stop there.
MR. COHN: Any questions?
MS. GREENBERG: Thank you, Jim. Not surprisingly, my ears perked up on the standards. Is the contractor going to be looking at the standards that are used for these -- I guess you are talking about a number of the demographic and associated variables that are being used in the clinical and administrative world, such as HL7 and X12?
Increasingly, there is discussion of, when we have electronic health records, you might be able to feed some of the data that we now rely on surveys.
I certainly don't think they will replace the need for surveys, and I think the surveys generally are at a more advanced stage in collecting these demographics.
So, it is not necessarily that they should adopt what is being used by these standard development organizations, but it seems it is very important to have an interaction between those environments.
MR. JIM SCANLON: The whole strategy, I think one phase of the -- they are just different legs of this stool. One of them will be to look at, in our major surveys and major data collection systems now -- surveillance -- to what extent are we using any sorts of standards.
These are often called statistical standards in the statistical world. Race ethnicity is one of them. There are standard classifications for various things, for statistics.
Where there are not standards, there are conventions that we have agreed on for how we will collect data.
So, we want to make sure, number one, that what are we collecting now in the major surveys, the major data systems, and these are our work horse data systems. These are the ones that really make up 90 percent of our national statistical resources in health.
Then we will be looking at what are the standards that are available at the same time. There, we won't just confine those. We will clearly look at statistical standards, but we will look at standards in the health care world generally.
It has always been a strategy of ours that we would try to link population based surveys with administrative data where we could.
In fact, we have been doing this for decades. I hope people know that. We have always had, and we have included in our population based surveys, the capability to do that, and we have asked for -- we typically ask for consent of the respondents right at the beginning to do that, the health interview survey, for example.
So, we have always thought it part of our strategy that, as the administrative and clinical, further down the line, standards and data became more usable for statistics and research purpose -- this often takes quite a while -- that we would have the capability to link. So, we would be looking at whatever standards would make sense in that area as well.
MS. MC CALL: Just to extent that a little bit further, the theme of interoperability, technologically it is important and, if you think about it, it is important with respect to language and standards and taxonomies and all of that.
Have you had any discussions about when there is more than one convention, or more than one published standard, about creating a mechanism that helps people walk from one to another?
MR. JIM SCANLON: This is a classic problem. You know, if you have two surveys, you get two estimates, if you have three, three estimates. It is the same with actuaries.
MS. MC CALL: Thank you.
MR. JIM SCANLON: It is complicated because, in many ways, it gives you a different perspective on the same problem, and in other ways they look like there is obvious duplication and it is actually confusing to policy makers.
You know, is the number of uninsured 20 or 45 million people. So, I think -- and I think we will look at that in terms of, there are not as many standards, unfortunately, as we think.
We made up some in HHS, conventions we agreed to a while back. We followed the OMB race ethnicity standards. We have a convention for collecting date of birth. It shouldn't be that hard, but we had to standardize that.
Even sex, oddly enough, when we looked at, let's say, our 30 most popular data systems, there were probably about six variations of ways to do it. This includes the odd things like, where it is undefined or undetermined or something like that.
Demographic is probably one of the major areas where you get the best pay off, particularly age groupings, where we generally try to correspond to the census, so that you can compare.
I think this will clearly come up, Carol, where we have more than one, and any guidance -- I think we will try to get a sense of what do people think is the best or the most useful, and then we will have to see how we can sort of get people to move to one.
Interestingly, in survey research, there are sets of measures for cigarette smoking, for example, what constitutes a current smoker, and in substance abuse, what constitutes a current user.
There are sets of questions that have more or less become the standard way of asking it, although clearly we don't ask it in the same way in all of our surveys. So, we will look at how much we can get into that. Income is another area. We ask it in many different ways.
MR. BILL SCANLON: In terms of trying to improve the information on people using private insurance, because I know we have a lot of information on the public insurance side, have there been discussions about the potential of using the federal employees information, even though it is not a representative group of people in terms of being able to identify a wide range of people, a lot of different markets?
It seems that there is a potential there, on a routine basis, to combine it with some of the survey information we have, that we could get maybe a better, richer sense of what is happening on the private side.
MR. JIM SCANLON: If you are part of the federal employee health benefit program and you fall into one of our surveys, and we have claims -- we collect claims data -- then it would come up automatically.
In general, we haven't systematically used the -- we have used it more for specific policy research. For example, in ASPE we just finished a study on the federal employee health benefit program, how do they implement mental health parity requirements, and we used federal employee health benefit information there.
We don't otherwise use it. I am not aware that we use it in a more systematic general purpose statistics basis, but I think we should really look at that.
MR. LOCALIO: Jim, I am going to direct this question to you, but maybe it applies to others. It seems there are four ongoing initiatives that have to do with privacy and confidentiality, the one you mentioned, privacy and confidentiality subcommittee on the data council is looking into various matters.
The first priority of AHIC is going to be to make recommendations on how to protect privacy and security. Mark, in the subcommittee on privacy and security here, has been looking into those matters for a long time, and the subcommittee on populations here has been looking into some of these issues with regard to access to data.
What is going to be the formal or informal system or structure for making sure that the right hand knows what the left hand is doing, knows what the right foot is doing and the left food is doing, so that we have some consistency.
MR. JIM SCANLON: First, I am happy that we actually have four groups looking at privacy. Usually we don't even have one.
Each of these, I think, have different perspectives. To be honest, in privacy, I think we are at a point where we really do have to look at exactly -- given where people want to head -- this is in the HIT world, not so much research in statistics -- I think there we do have a well thought about body of statutes and policies and practices.
I think we are -- I don't know. We are just going to have to communicate, but the data council's group is looking at, number one, its Health and Human Services Privacy and Confidentiality issues, and it is largely an internal focus about how we, number one, coordinate internally and, number two, when we do have privacy issues, we have a way of dealing with it internally.
The NCVHS committee really has a much broader advisory function. The other two, I think they are in formative stages. I don't know where they are going to go. I think you are right, we have to find a way to have all of the information coming together.
MR. COHN: Anything else? Well, why don't we move on to Karen Trudel. Karen, thank you very much for joining us.
MS. TRUDEL: Thank you. I am going to talk about various aspects of HIPAA and touch a little on e prescribing and some of the e health initiatives that CMS is working on right now.
So, let me start with HIPAA. I am happy to report that the attachments proposed rule, claims attachments -- HIPAA claims attachments proposed rule -- did go to OMB on May 30, and based on their normal review schedule, our tentative publication date will be September 23. So, we ar happy that we have been able to move that along.
The national provider identifier enumeration system did go into operation on May 23, as planned, and at this point we have enumerated about 22,000 providers successfully. The majority of them, as you can imagine, are from Florida, California, Ohio, New York, Texas and Tennessee.
This is a one for one enumeration. Almost all the applications were received via the web based application system.
The bulk enumeration process where we will be able to enumerate groups of providers will begin in the fall time frame.
We have revved up our outreach process as well, and I am happy to report that last week we had our first HIPAA round table call that discussed only NPI issues.
It was very successful. We had about 1,500 connections on the line, and our next one is scheduled for late September.
In terms of HIPAA compliance at this point, again, over 99 percent of our inbound claims are compliant. Eighty-one percent of our remittances advices going out are in a HIPAA compliant format.
What that means is that 81 percent of our trading partners are able to receive HIPAA compliant formats. Less than 30 percent of our coordination and benefit transactions are going out in compliant format at this point.
It is primarily because we have recently switched over to another coordination of benefits contractor, and a number of plans made the decision that they only wanted to test once, and they were going to wait until the coordination of benefits contractor was up and running, and then would do their testing and go live.
So, we are seeing some increase over the past months, and we expect it to rise sharply over the next quarter or two.
The real time 270-271, which is the eligibility query and response, is undergoing testing at this point. We are testing with several very large clearing houses.
The testing is going very well, and we are expecting that we will have a regular EDI based real time 270-271 capability coming from the new data mart by September.
Shortly thereafter, we will have a web based process where providers can use the internet to do 270-271 queries as well, on a one by one basis.
So, that is compliance. Let me talk a little bit about complaints. At this point, we have received a total of 334 complaints on transactions and code sets. About 190 of them are still open.
The vast majority still are based on the fact that a compliant transaction was rejected by a trading partner, although we are starting to see that the transactions that are included in the complaint, that are the basis of the complaint, are moving from the claim to the query response transaction.
So, we are starting to see complaints about 270-271, 276-277, which is encouraging because, again, that is where much of the return on investment is expected to be generated from.
Also, we have received a whopping big 13 security complaints since the compliance date in April. Interestingly, seven of those were crossed over to us from the Office for Civil Rights, based on our dual processing complaint agreement. We are working through those.
Let me talk about e prescribing for a little bit. We are still working on the final rule, and are getting much closer to working on the request for applications for the e prescribing pilot that is to be carried out in calendar year 2006.
We are working very closely with the Agency for Healthcare Research and Quality, AHRQ, and they have helped us enormously with setting up the proposal for getting the applications in.
They will be doing much of the vetting and scoring for us. So, we will be using their normal process for doing that.
On the e health front, I am also happy to report that the Office of HIPAA Standards is now officially the Office of E Health Standards and Services. Our name change was published in the Federal Register, I believe, last month.
We are continuing to work on both strategic and tactical planning to pull all of CMS' e health activities together.
One thing in particular I would like to report to you is that we are planning a CMS open door forum, which is similar to our HIPAA round tables.
Normally, open door forums are geared toward a particular provider or population -- hospitals, physicians, et cetera.
This one will be an open door forum on the concept of personal health records, and what CMS' role would be in the personal health records space.
We expect to have that, I think it is tentatively scheduled for July 21, and Simon, I believe, is going to participate in that open door forum, to lay the groundwork, based on the material that NCVHS has already gathered, in terms of personal health records, so that we are not starting over.
We are using, again, as always, the NCVHS experience, and knowledge, to lay the ground work, and we are going to be hopefully getting perspectives from plans, providers, provider organizations, beneficiary organizations, vendors of personal health record tools, to get a good idea of essentially where CMS could play a productive role in helping to move along with personal health records. I think I will take questions now, if you have any.
MR. BLAIR: Karen, thank you. It is really nice to see progress on so many fronts. I have a question, but I realize that a lot of the members of the subcommittee may not be familiar with either history or some of the terms, so let me just do a very brief preface.
During the last four years, or five years, NCVHS has been very much involved in evaluating, selecting and recommending standards, especially with respect to clinical data, as well as the HIPAA, which is mostly financial and administrative data.
Those standards have been evaluated and pretty much recognized as CHI -- consolidated health informatics -- initiative standards, which the latest RFP for standards harmonization indicates will be the foundation of how we move forward.
So, now that you know what CHI standards are, I can ask my question to Karen, and it will make some sense to the rest of you.
Karen, can you give us any kind of a -- you gave us an update on the HIPAA, the adoption rate of the different HIPAA transaction standards, and in short, can you give us an update of the status of the CHI standards at this point, in terms of who is responsible, how it fits into the broader picture, and how it will relate to the federal health architecture, as well as to the new RFP for standards harmonization.
MS. TRUDEL: That was a lot of big questions. I will supply part one of the answer, and defer to Lee Jones, of the Office of the National Coordinator, who will be speaking this afternoon, to supply his perspective on the issues as well.
We do defer to the federal health architecture, and the Office of the National Coordinator, at this point with respect to CHI, because the CHI initiative has folded in as a work group under the FHA, which, if one stops and thinks about it, makes perfect sense, because clinical terminologies and messaging standards are a basic building block of any kind of an architecture for health.
It is difficult to provide compliance numbers with respect to CHI standards in the same way that we do for HIPAA.
HIPAA, if you will recall, was industry wide, and there was no kind of phasing in. It was for certain specific administrative transactions.
The implementation for CHI was deliberately made longer time. It was to minimize risk and to minimize cost. The concept behind it was that we would only implement, or look to implement, CHI standards in systems when those systems were up for a major redesign or a new system was being developed.
So, because I don't have the denominator, it is very difficult to give you a progress report. I think what I can say is that agencies in this federal health space are definitely looking to make sure that they have incorporated the CHI standards into their architectures, into their information technology review processes, into their contract language.
I know CMS is in the process of doing many of those things. I know, for instance, DOD has done many of those same things, too.
I would say that DOD and VA, in particular, are working on implementing CHI standards, because they have certain specific program initiatives that they are required to do by a date certain. So, that is really the best answer I can give you, and maybe we can elaborate on it this afternoon.
MR. COHN: Thank you, Karen. Jeff, you can get a chance to re-ask it this afternoon.
MR. REYHOLDS: Karen, as it relates to NPI, have most of the providers that have gotten NPIs to date single providers, or have you seen institutions step forward and, if they have, how do you see the make up of that versus the way they used to do business, as far as numbers are concerned?
MS. TRUDEL: I am sorry, my numbers don't break down that way. It is just by web and paper and which the top states are. I can't answer it, Harry, sorry.
I would guess that many of them, though, are individual providers, because there is some question in some providers' minds as to how they are going to structure themselves if they are institutional providers, in terms of requesting numbers. I know that medicare has not put out its guidance on that yet.
MR. FITZMAURICE: Thank you, Karen, for the good update, very comprehensive, as usual. For years, CMS has had an internet policy for submitting claims, but has not implemented the policy.
I wonder if CMS is moving in the direction of permitting claims to be submitted through the internet. Do you have any pilots or plans to let the contractors or the intermediaries, the carriers, do this? How does that stand?
MS. TRUDEL: That is really a very big question. When you look at web enabled transactions, there is a huge infrastructure that goes under it, in terms of data centers and security and other things.
What I will say is that we are definitely moving in that direction. We do have a couple of pilots that are already happening which are not accepting claims over the internet at this point, but are providing better service to providers in web enabled areas, like claim status information via the web, the ability to download a remittance advice in a PDF file.
We are definitely moving in that direction, and I think the overall strategy that the agency is working on to modernize medicare fee for service, to modify our infrastructure, will inevitably lead us to the place that we will have a much larger web presence than we have in the past.
MR. COHN: Thank you, Karen, very much. Sue McAndrew?
Agenda Item: Privacy Rule Compliance Update.
MS. MC ANDREW: The privacy team within the Office of Civil Rights continues to work on reinventing itself. Part of our move forward, I am very happy to introduce Patrick Hadley, who has joined us. This is his first week. So, he is getting to meet and greet lots of people.
Patrick comes to us from the Indiana state department of health, where he was the privacy officer there for two years.
He is taking over the outreach function and the public education function within the privacy team. So, hopefully we will begin to be more proactive in the areas of our outreach efforts, and how we communicate with not only covered entities, but with the public at large, and will have a much more structured agenda for speaking engagements, and turning out responses to correspondence, and other inquiries that we get, and will stay on top of our technical assistance.
So, he will be wearing many hats. He is getting used to them all, and we are going to try to treat him gently for the first couple of weeks, so that he thinks this is a really great job that he has gotten. Then the reality will set in.
MR. COHN: So, we shouldn't ask him any questions yet.
MS. MC ANDREW: We are very happy to have him. If you -- this is really the position that Kathleen Pfyffe had in the early days of the team, before she moved on to Dr. Brailer's operation.
Okay, I am trying to remember my timing on this. Earlier this month, we did issue some new guidance on the web concerning how protection and advocacy programs that operate in all states, I believe, can achieve access to protected health information in order to do their interventions and advocacy on behalf of mentally disabled and other persons in need.
They -- essentially, the protection and advocacy statutes do require entities to share information with them. So, most of what they do will meet the permission in the privacy rule where required by law, disclosure.
We have made that clear in an FAQ, and hopefully this will ease some of their access problems to information, so that they can effectively advocate on behalf of their clientele.
On the other policy front, I would say the common period closed last week for the HIPAA enforcement rule. This is the rule that will govern how we move forward jointly, both CMS and OCR, on both claims management as well as working up a case for a civil monetary penalty and notification requirements to entities, as well as hearing rights, if we do impose a civil money penalty.
I understand that we received somewhat less than 50 -- around 50 comments on this rule making. So, we are looking forward to being able to move rapidly through the common analysis and coming to a final rule on schedule, which will hopefully be out this fall.
On the privacy complaint side, in addition to identifying and referring seven security rule complaints to our friends in CMS, to date, as of the end of May, we had received over 13,000 complaints.
I ran the numbers this morning, and we really are up over 13,600 complaints. We have continued to maintain a closure rate of 65 percent.
MR. BLAIR: These are complaints of what nature? I don't understand.
MS. MC ANDREW: These are complaints alleging privacy rule violations.
MR. BLAIR: From any and all sources, 13,000?
MS. MC ANDREW: Yes.
MR. BLAIR: So, it is the whole bucket.
MR. JIM SCANLON: Cumulative.
MS. MC ANDREW: Cumulative, yes, since April 2003. So, that means that to date we have closed some 9,000 complaints.
The allegations continue to run to form. Again, impermissible uses and disclosures continue to top the ranks of the things most complained about, as well as the lack of adequate safeguards.
We still get complaints about access, denial of access, to write to their records, and we are getting an increasing number of complaints about the fees that are being charged for the access to records.
The fourth most frequent thing complained about are potential violations of minimum necessary, and concerns that authorizations were not obtained when they were needed.
There has been no change in the types of entities complained against. That continues to be private health care providers and general hospitals and pharmacies, outpatient facilities, as the four top entities, and then group health plans continues to be the fifth most complained against group. We have referred 211 of these complaints to the Department of Justice for potential criminal prosecution.
In terms of trends, I mean, for most of this year, we were running, on average, between 140 and 145 complaints a week, and this is distributed across our 10 regional offices, although Atlanta continues to get the lion's share of these complaints.
I think they still are running fairly true to the population distribution that is reflected in our 10 regional offices. So, it is not like people in Atlanta are more cranky than other people, or more privacy prone. It is just that is where the population is.
In June, there has been a slight downtrend in the number of complaints, and we are averaging only a little over 100 a week.
So, I don't know whether that is because the numbers aren't quite complete for June, or whether the summer is beginning to set in, and we may get some relief in terms of the influx of complaints. We are seeing just a mild downtrend and we will see if that holds.
MR. COHN: Thank you. Questions?
MR. HOUSTON: I will ask my typical question, which is any news on statistics that we had talked about before.
MR. JIM SCANLON: A little louder so we can hear you?
MR. HOUSTON: A question regarding on any update on statistics we have asked for before?
MS. MC ANDREW: I think only -- the only hope on the agenda in that area is that we do have vacancy positions out.
It also is summer. So, we have summer interns. So, we have this additional manpower from unusual sources, which we can -- which we are going to be using to work with the complaints data base, to see --
MR. HOUSTON: You have my suggestions, still?
MS. MC ANDREW: Yes, I still have your suggestions, although they are in danger, because one of the things we are doing is, we are moving offices. So, I am trying to make sure that I don't lose important pieces of information.
MR. COHN: You have asked that for how many years now?
MS. MC ANDREW: Not years, but about a year.
MR. BLAIR: What was it that you are asking for trends on?
MR. HOUSTON: There was a variety of just trends in terms of types of providers, just information on types of provider types of complaints, just to get a sense of where really the focus of issues were, so as the privacy subcommittee sort of explored and continued to deal with this issue, that we could try to understand really where were the issues arising, and try to just, again, figure out what our agenda should be.
By the way, if you do have interns, I would be more than happy if you would like to engage me, I would be more than happy to talk with them, work with them, in terms of trying to put the statistics together.
MS. GREENBERG: Pro bono?
MR. HOUSTON: As a member of this committee, I would be more than happy to spend a little bit of time to make sure we get the statistics right, or the queries right.
MR. BLAIR: That is a generous offer.
MR. TANG: I have a question. What do you anticipate the impact of the DOJ ruling about whether an individual can be prosecuted or not, what is your interpretation and how do you think that will impact either the complaints or the resolution of those complaints?
MS. MC ANDREW: I am not sure that it will have any impact in terms of the complaints that we are receiving. I think the referral percentage was not that -- the criminal area was not a large proportion of those claims in any event. So, I am not sure that that is going to have much impact in terms of what OCR is seeing.
In a sense, I think that, because of the peculiar relationship between OCR's civil jurisdiction and the justice's criminal jurisdiction, that their clarification that that also -- the criminal jurisdiction is also limited to actions against covered entities.
We will push some types of complaints back over strictly into the civil arena. I think, though, they have made clear that, although it is -- I mean, the statutory interpretation is that both jurisdictions look to covered entities as the actor for both sets of sanctions, that this is not -- that individuals can still, in many ways, still be culpable, and subject to criminal sanctions. Under HIPAA in terms of, however, a corporate entity, it falls out in terms of individual responsibility.
MR. COHN: Sue, can you get closer to the microphone? I think I am hearing most of what you are saying.
MS. MC ANDREW: In many of the criminal cases that have been referred, I think people need to remember that there are other kinds of criminal statutes besides HIPAA that would apply to many of those actions.
I think identity theft or just general theft or fraud statutes may well continue to implicate some of the individual bad actors.
MR. ROTHSTEIN: Sue, I could be wrong, but I don't recall your mentioning in the past that minimum necessary was the source of the complaints.
Maybe it is something that the level has increased that you have noted. I am wondering whether you could characterize those complaints for us and, assuming no -- because it is such a broad area -- I was wondering whether you could just pull out those complaints and have someone take a look at it.
Our subcommittee on privacy and confidentiality is planning to hold hearings in the fall on minimum necessary, and it would be very valuable to us if we could have a better sense of the nature of those complaints that you have been receiving.
MS. MC ANDREW: I think it really has always been the fourth major area of complaints for some time. So, it is not that it is new or increasing.
I can check the numbers to see if it has -- I don't think it has necessarily spiked more recently. The only thing that I recall off hand in terms of the characterization of those kinds of complaints -- and we can have someone look into that for the committee -- is that the -- it came up a lot in the context of incidental uses and disclosures, where there may have been a complaint about activity in a waiting area, or someone in line in the pharmacy, and whether or not the disclosure was properly within our permission for an incidental use and disclosure, which is conditioned on having observed minimum necessary standards and appropriate safeguards with respect to the underlying disclosures.
For instance, if someone complained that a receptionist was speaking in too loud a voice and was revealing their health information in an area that wasn't sufficiently private, the complaint would be categorized as potentially -- lack of safeguards and potentially minimum necessary.
MR. ROTHSTEIN: So, you don't have a separate category for violations of the incidental disclosure. They would be captured under minimum necessary.
MS. MC ANDREW: I think it is likely those would be -- the issues would break out into a possible impermissible use and disclosure, a possible violation of minimum necessary, a possible violation of safeguards.
MR. ROTHSTEIN: That is helpful, and we would very much appreciate any breakdown you could give us.
MR. BLAIR: We have Bob Hungate, and then Harry Reynolds and Jeff Blair, and then we are going to need to move into the next area.
MR. HUNGATE: Susan, maybe you can help me with an answer that I would like to be able to give. I tell people that I have a little involvement with HIPAA, and I immediately get all these daggers thrown in my direction.
It is my feeling that, as we have moved from paper processing into this more electronic world, we have given a lot more visibility to complaints.
So, when you hear a number of 13,600, that sounds like a lot of complaints. If you thought about the total number of transactions that went on, it is a very small percentage.
Do we have any feeling for what the real base is that this percentage relates to? Is there any way of really saying what the relative significance of this number is? I think it is very, very small, the percentage of events.
MS. MC ANDREW: I think it is small relative to the millions of providers and the counts that we made there, and the thousands of health plans, or hundreds of thousands of health plans that are out there.
So, compared to the potential universe of just entities that are potential covered entities, the number is not that great.
You magnify that by the number of transactions that any doctor, pharmacy or health plan engages in, in any given day, and that further would magnify it.
We certainly have not seen to date any kind of core repeat offenders. So, most of these complaints are against the provider A and then fixes that and you don't hear back anything further about that provider. Other than a few, for instance, pharmacy chains, there is not a lot of repeat complaints.
MR. REYNOLDS: I want to play off John's continuous question, which we all agree with, but I think it might be perceived that this is really needed just for the committee.
I think, more important, what we found in transactions in code sets, CMS has been very, very open in their communication and willingness to share the information and what is going on, and that has allowed the industry to learn.
So, the 13,000 complaints, then, get dealt with, with individual institutions and they learn. There is no learning out there on how to deal with the privacy of significance. It is everybody interpreted it and then they went and did their thing.
I think what is more important with this information getting on the street is that it will be a way for institutions to learn and prove themselves.
I think every institution that implemented this really wants to do it. They have spent a lot of effort and time, and they also want to learn, as to where they might have thought of it differently or, whoops, that is not what everybody meant it to be. I think that is really going to be the ground swell positive of the report, not making John be quiet.
MR. HOUSTON: That will shut me up.
MS. MC ANDREW: I would certainly agree on both points. One, what we have found through our complaint process is entities are very cooperative, and they really want to do the right thing and resolve the complaints and get to yes.
So, I think that has contributed to our ability to have closed as many complaints as we have had, is based on the cooperation of entities to do the right thing.
We certainly also agree that there is a lot of good information that will inform policy as well as practice in those complaints, not only the closures, but some of the open complaints.
We have had an interest in being able to tease out that data and find a way of communicating it in a useful manner, and it helps, though, I will say, to have the committee's nudge to keep that in front of us as we try to sort through all of the priorities that we are dealing with on a day to day basis.
MR. HOUSTON: I will be happy to continue to ask the question.
MS. MC ANDREW: I look forward to that every time I come here.
MR. COHN: Jeff, I think you have the last question in this session.
MR. BLAIR: Thank you. Susan, you have had a difficult job to do with respect to these things, and thank you very much for keeping us updated on the status of the legal complaints.
You just mentioned that there is a new entity that is now going to be available, which is going to be responsible for education and outreach.
I think you mentioned, I think I heard you say that that would be to the public at large. Could you tell me what the purpose or the message is?
I think it is a good thing. I just want to make sure that I understand the purpose and the message and the scope of reaching out to the public, to try to help the public understand that there is something that has been done to protect the privacy of their personal health care information.
The only survey that I know that tried to measure public trust in having their health care information form compare to the value of electronic health records seemed to indicate that the public at large was divided, almost half in half, which I think is a major concern to us moving forward to transform health care into the information age, if we cannot significantly increase public trust that their health care information is being protected. So, can you tell me a little bit more about the outreach and education that is being planned?
MS. MC ANDREW: I just would clarify for you, Jeff, that what I was announcing is the fact that we now have Patrick Hadley joining the OCR team to lead that effort.
That additional resource will allow us to pay specific attention to shaping the message going forward, not only for the public at large, but also how we communicate and what we need to communicate to the various industry sectors that are covered and have to comply with the rule.
I would hasten to mention also that this is Patrick's first week, and Simon had promised to hold all hard questions until perhaps our next meeting.
So, I would defer your question until that time, where we may well have a report for you about what those priorities are.
MR. COHN: Susan, thank you for that very deft handling of that last question. We don't want to scare him away since he is just starting.
I want to thank all three of you. This has been a very interesting conversation. I do want to apologize to committee members because of the time frames. My job is to keep everything on time, or close to it, anyway.
I am reminded, in September, we will provide more time for this particular session, so that we can really spend some time talking through some of the issues.
I think we are all a little frustrated that there really was not enough time to really get into much here. So, we will just make sure that we start adding more time to this starting in September.
Having said that, we are going to move on to the next topic, which is an update on the Board of Scientific Counselors, and Ed Sondik, welcome, we are pleased to have you, and June, I think we have already welcomed you both as the liaison and to give us the briefing. So, thank you for joining us.
Agenda Item: Update: NCHS Board of Scientific Advisors.
MR. SONDIK: Thank you. I have the very pleasant task today of introducing the chair of the Board of Scientific Counselors of NCHS.
I am not sure I have met all of you, but I am Ed Sondik of the National Center for Health Statistics, and now we have met.
When we have talked here before, and I have updated you on activities in NCHS, we talk about the roles of the National Committee on Vital and Health Statistics, and the NCHS Board of Scientific Counselors.
Our goal is to make these two organizations complementary and close to one another, and I am very pleased that Dr. Cohn attended the last meeting of the board of scientific counselors and Dr. O'Neill is here, and we are both going to be attending the meeting later this summer, the executive subcommittee.
I think I am very pleased about this because I think it puts us headed in the right direction. Then I would like to make one other comment, actually, just before we break, if I could, very briefly.
I would like to introduce Dr. O'Neill, who is the Wallman professor of economics and finance at the Baruch College, the City University of New York.
I know I mentioned this before, but I will just emphasize it again. When this board of scientific counselors was created, one of the changes in a proposed roster that was made here in the department was a very strong suggestion that the roster include people with an economics and health economics background.
That turns out to have been, I think, an exactly right move. It has been very useful to our discussions, and I think it has added a perspective to NCHS, while we report data on health economics, our actual direct involvement with that, our involvement with the health economics community has not been as strong as it could be.
So, we have changed that. In fact, there is a major meeting taking place in a couple of weeks from now, where we will be -- a health economics meeting -- where we will be fully represented, I am happy to say, and we will be discussing what NCHS and the data that we have can do to help health economics. So, with that, Dr. O'Neill.
MS. O'NEILL: Thank you, Ed. I, too, would like to thank Dr. Cohn for attending our BSC meeting. I think it was helpful in forging closer relationships.
I also would like to thank Vicky Mays, who has attended our meetings from the inception, and her participation, we have also really appreciated that.
Aldona Robbins was our representative to the National Center for Vital and Health Statistics and Aldona has now transited off the board.
We have staggered appointments and hers happened to come up, but we will be identifying a new liaison to the NCVHS.
Now, in terms of BSC activity, I will very briefly summarize. We haven't been around long enough to be reinventing ourselves. We have been trying to invent ourselves.
It is always a difficult task for a new group that is not quite sure how you can be useful, and we spent really the initial meetings -- I guess we have had -- when did we start, 2003 -- so, we haven't had that many meetings -- acquainting ourselves with the national center.
I think everybody on the board of scientific counselors has had familiarity in one way or another, but we never really knew about all of the activities that go on at the national center, because they are large.
The health statistics have become really a vast statistical enterprise, and given the importance of health generally in the economy, that was bound to happen.
At any rate, so our initial discussion was sort of finding out what was going on, and taking up some issues that came up along the way.
One was the obesity issue which was, I guess, to some extent an embarrassment of the data being used initially by a government official in a way that turned out to be not correct.
You know, thinking about this particular episode, I think is useful as a way of, how does information get spread around.
It is one thing for a reporter to say something that turns out not to be correct, but for an official to make a fairly dramatic statement that turns out to be not correct, is somewhat more -- and the issue is still percolating.
I think the current issue of Forbes Magazine has an article bringing it up and rehashing it again, and interpreting it as an effort by CDC to get more funding by coming out with a dramatic announcement.
So, the issue is by no means dead, and I guess that is something that both we and the NCVHS should be sort of thinking about, trying to -- I think just the episode in itself is going to have a good effect on announcements being checked carefully or things that are written in prominent places being given careful checking out.
We have recently embarked on what we expect to be sort of a major portion of our work as scientific counselors. We should be applying scientific standards to reviewing the various activities and programs in the national center.
We are beginning to do that. We are starting first with vital statistics, and the mortality component, which seems to be more self contained, as a first excursion into doing an evaluation.
It would be one that is sufficiently contained that we felt we would be able to handle it, and learn from our experience doing this.
At our last meeting, we began -- we developed a protocol way of evaluating programs, and we expect at the next meeting to begin this evaluation and to appoint reviewers, which I will come up with in a minute.
Now, these would involve an external board of reviewers with expertise in the particular field, who are representative of important users.
We will probably have three for the mortality, for the vital statistics on mortality. We would be happy -- we haven't yet appointed these reviewers, but would be happy if anyone had suggestions for someone who is an expert in mortality vital statistics, who would be a good reviewer.
Now, the particular protocol that we developed, we are looking at three dimensions of the program -- program activities, the information product. The second is the capacity resources of the center for dealing with it, and the third dimension is the efforts to improve.
Within each of these dimensions, we will ask -- the review panel will be asked to address three questions. The first is the current status, where are we now, what is the program doing.
The second one is quality, which may be a really important one, is how good is what we have been doing, are doing, with this, in terms of the program.
The last one is responsiveness; to what extent are we meeting the needs of the users. Now, during the summer, we hope to get this underway, so that at our September meeting we may be able to get a preliminary report of the reviewers and, if all goes according to plan.
Then we will continue from there for a final report, and perhaps start with another review. So, that will be a large chunk of what we are doing.
I guess those are sort of -- we have also been concerned, generally speaking, with the resources available for health statistics, and how we might impact on that.
From my experience with government statistics before with the budget, the easiest thing to cut during a time of budget crunch are data and basic research, but data in particular because it really doesn't have a lobby group out there, or lobby groups, that can effectively lobby for resources.
It is the public as a whole, and they can't come to congress. In fact, the public as a whole probably isn't really quite aware of the use of statistics or the importance of statistics. It is not something that the average person deals with.
Of course, there are users and, to some extent, they are organized, but professional associations typically don't like to lobby and really can't be counted on.
So, it is an issue. We, as a committee, that might be something that we would think about, if we felt that resources seem to be short changed, because the health statistics needs are growing. They are not shrinking.
It is important, and that might be something that we could do, together with the NCVHS. That might be one thing. At any rate, are there any questions that I might be able to answer?
MR. SONDIK: I would direct the board to I guess it is tab three, where the roster of members of the board of scientific counselors is contained.
I would say, just related to resources, I think it relates actually to the next agenda item right after the break, in that one of the ways that the board of scientific counselors, in addition to the detailed review of what we do and how we do it, that one of the ways that the board can be helpful to us, as well as NCVHS, is in helping us to make trade offs.
The agenda being proposed in the next report, I think, is an important one. I don't think it is overly ambitious, actually. I think it needs to be done.
Given the reality that June just mentioned, of the budget, it means that there are trade offs that we have to make, and both of these organizations can be very helpful to us in helping us determine how to make -- giving us advice on how to make these trade offs.
Just one other point about the obesity issue that was mentioned, what I would say to that is science marches on.
It is extremely important in NCHS that we have a strong science component, and I must say it is one that I am very proud of and, in discussions with Dr. Gerberding very recently, I must say she is also very proud of that component as well.
We continue to use our resources in new ways, and to try to get at the issues that are really of critical importance to policy makers.
It is science, and things happen in science in which new results may look very different when compared to older results. That is why we do that in a public forum, in fact, to debate these issues.
MR. COHN: Just speaking as an individual consumer as well as everything else, I want to thank you for the publication of your results. That is a personal view.
MR. STEUERLE: This is a question for you, and I guess it is a question for Simon, because I have posed the same question to him.
In so many areas of life I think our principle problems often come, not from knowing what to do but not doing it, but not knowing what we don't know.
In the area of health statistics, it seems to me that all of us probably around this table have some area where we really think there is some statistic that must be gathered, but it is simply not.
You heard a very minor example just a second ago with respect to more broadly the issues of the cost of HIPAA and how these privacy things are playing out.
Are data being gathered there? I have a complaint that nobody could even tell me, with health costs going up by eight percent a year, who is being paid what. Do we have eight percent more providers, or what providers are being paid more? We don't even have that statistic.
You will hear later some concerns about the populations subcommittee about data that we are not gathering on the allocation for health care.
I wonder, between our two committees, I mean, who sits down and actually sits down and not just sort of looks at particular pieces of data and examines how to refine them and inform them, but I really wonder if we have some organized way to ask these questions, at a crucial level, what data aren't being gathered, so that your committee or our committee can actually make those recommendations to say, here are some vital pieces of information that are missing.
This is an organizational structural issue, but it has bothered me. I haven't quite figured it out, maybe just because I am naive.
MS. O'NEILL: That is a really good idea, I think. It is possible that, within each of the existing programs -- and the third component of these reviews is what should be done to improve -- and one of the items would be data that are not collected.
It may be that there is no program that could encompass certain kinds of information, and I think that would be a useful thing to do, but we should talk about that.
MR. SONDIK: I think it is an excellent suggestion. We have actually formal ways of doing this within the center for the various components, but in a sense, it is component specific, program specific.
We also have a more overall approach when Health U.S., which actually conceivably could report some of that information, that we would work with our colleagues in other agencies to develop.
It is conceivable it could be in Health U.S., and there is a formal process for the review of that, but it strikes me that it would be very worthwhile to discuss this, perhaps at another meeting, as to what mechanisms we actually are using, and how we could be sure that we are asking the question, if you will, the old Mayor Koch question, how am I doing, that we ask it in the right way and in the right venues, so that we get the things that -- so that we get at pieces of information, the questions that may not fit the current structure.
MR. COHN: Certainly, Gene, that question makes me very happy that you are on the population subcommittee, because I think that is one of the focuses of that subcommittee.
MR. STEINWACHS: I was looking for an update on the how the reorganization is going on in CDC, and affecting NCHS, and also I guess the question of whether or not the board of scientific counselors, if that is one of the things they are looking at, too, is the organizational positioning and the interrelationships between the center and the new structures.
MR. SONDIK: I am happy to answer, very briefly, having just returned from Atlanta hours ago. Actually, the board of scientific counselors has heard a great deal about this.
I have been wearing two hats over the last eight months or so. I have been the acting co-head, really, of the coordinating center in which NCHS now is one of the three components, along with two new centers, one on health marketing and the other on health informatics.
We have been standing up these centers, as I think you have heard before, and looking for heads for them, and I am happy to say, I think we are getting -- I know we are getting -- close to the heads of these two new centers.
So far, I think this has been very positive for NCHS. Our budget has not been affected in any way. We continue to have very strong support.
For example, in 2006, the budget for CDC is projected to go down, but the budget for NCHS is flat. So, you have to look at that as positive. It is not what I would like, but it is positive.
Given how much the CDC budget is projected to go down, it actually is a very positive statement. I have a number of discussions going on that relate to informatics and NCHS, which I think is very important.
I talked to Dr. Brailer, for example, and his relationship between informatics and CDC and what it is that we are doing in NCHS, and I think that is all very positive.
So, I would say so far I think things are fine. Our mission, if anything, is stronger because of the new goal structure for CDC that is being developed.
It is very clear that we have to have an independent arm that will tell us how well we are doing -- we being CDC, but also the country is doing toward these goals.
The goals, I believe, are going to relate very much to the health people. I think they will perhaps be formulated in a little bit different way, but clearly they are not going to go off in any brand new direction.
I think things are really coming along. What we talk about now is the new CDC as opposed to the futures initiative, because all of the structures are -- well, essentially, they have all been put in place now.
Now it is a matter of doing business with a new budget structure which is aimed, by the way, at guaranteeing that our program will not be tapped to death, as happens in federal programs, and other programs, for that matter.
The program funds are now very explicitly outlined as opposed to before, in which they were intermingled, if you will, with the business services and other funds related to leadership. This breaks them out. So, I think we are doing fine.
MR. COHN: Great.
MR. SONDIK: Just before we break --
MR. COHN: Carol, real quick, did you have a quick focused question?
MS. MC CALL: It is actually more a comment, and I will be very brief. Just a follow on to the question asked earlier by Eugene, which really had to do with some themes that we discussed at our quality summit.
We had a two-day summit earlier, actually, this month, and one of the things that we found in this area of not even we don't know what we don't know, that will always be the case and there will always be new discoveries.
We discussed at length the need for, and the desire for, mechanisms that actually explicitly and formally transfer the new knowledge and share it as it is, in fact, discovered, that that becomes a very important part of the whole HIT effort and a lot of the statistical efforts.
It is very much related to standards, to your point, and in a scientific world, standards will emerge, things will change. They won't necessarily be gradual.
So, as we put forth our work plan, we are very interested in mechanisms that are in place today, and how they are working and what seems to work well and what doesn't work well and kind of who is doing what out there, as we move forward in our own work plans and work toward some recommendations.
MR. COHN: Thank you for the comment, well said. .Ed, I am going to give you about -- I hope you are making a brief final comment.
MR. SONDIK: Fifteen seconds. Marjorie, did you mention the publication of this volume?
MS. GREENBERG: I didn't.
MR. SONDIK: This volume called Health Statistics, Shaping Policy and Practice to Improve the Population's Health, has just come out, edited by Dan Friedman, former member of the NCVHS, Ed Hunter, who lives down the hall here and at NCHS, and a former CDC-er, Gib Parrish.
This grew out of the work of this body, and the data council, and I am really pleased. You all should feel like new parents, in a way.
It has a stellar set of authors here, including Ms. Greenberg. We hope that it really will help with the foundations for health statistics, and will really represent the academic, if you will, foundations for this and be very, very useful to us as we move this enterprise and profession along. So, congratulations to you all. If you didn't know that it was coming, here it is.
MS. GREENBERG: A number of the authors are either former NCVHS members or staff to the NCVHS, possibly as much as half, or people who have presented to the NCVHS. We will plan to order copies for all the members.
MR. COHN: My congratulations to all. It looks like a wonderful book.
MS. GREENBERG: Just plan to read it on the way back to San Francisco.
MR. COHN: Exactly. What I want to do is give everyone a break. We are running, as you can tell, a little bit late, despite my best efforts here. We will take a 10-minute break and come back at 11:00 o'clock.
[Brief recess.]
MR. COHN: The next session really deals with two reports. The first piece is the population report, eliminating health disparities, which is an action item for this committee meeting.
I just want to welcome Vicky Mays back. Thank you so much for being here, one of our former members, and I guess now a consultant working on the project, but really, one of our former committee members, and Don Steinwachs.
Also, after we are finished with that discussion, we will spend a couple of minutes talking about the NCVHS 2003-2004 report.
Don, I think I will hand it over to you and let you sort of give some people some high level perspectives on this, and then we will talk more about it.
Agenda Item: Populations Report - Eliminating Health Disparities.
MR. STEINWACHS: Thank you very much. I appreciate all the input of all the members of the whole committee, and very much the hard work of the populations subcommittee.
I told Vicky that she ought to feel like a mother that she brought forth this -- we figure it is just a four year gestation period. So, not bad.
MS. MAYS: Not even elephants gestate that long.
MR. STEINWACHS: Let me just give you this high level overview, and then we will open it up for comments, and I am hoping that we are very close to closure on this. I know that there is some specific word smithing and so on, and we welcome very much all comments.
The first hearings by the population subcommittee actually date back to June 2001. Then, in 2002, hearings were held that talked about federal issues and the federal perspective on the capture of race and ethnicity and the use of the data.
Also, a hearing was held in September 2002 in Denver, focusing on American Indians and the capture of information that could be useful in looking at health and health status issues for American Indians.
November 2002 there was a hearing in Philadelphia on the state needs for race and ethnicity information, and some of the issues that states face in trying to develop useful information, and this got into geocoding, and issues of geography, as well as the capture and access and use of data.
In May 2003, and in November 2003, hearings were held that were specifically concerned with the capture of information on health for Native Hawaiians and other Pacific Islanders, and part of this got into the recognition of how heterogeneous these groups are, and some of the very specific challenges of having data that are thick enough, and ones for which privacy doesn't really become an issue, that they could use in order to understand health issues, and whether or not health is improving.
All of that is brought together in this report which has two major recommendations. As you have seen, one recommendation specifically talks to enhancing the quality, reliability and completeness of data collection and data integration on race, ethnicity and linguistic subpopulations in the United States.
The second recommendation talks to improving the infrastructure so that it is possible for people to get the maximum use and access to the data and that there are ways to disseminate the information so that it maximally gets to users.
Within this framework of the two recommendations, we recognize there is some overlap when you talk about the issues of quality integration and you talk about infrastructure.
Our foot forward, based on the hearings and the considerations of the subcommittee is a series of strategies recommended that include strategies that talk to what can be done within the department, between the department and other government agencies, the federal government and the states, and with the private sector.
So, these strategies really are quite far reaching. We have tried to make them as specific as possible, so that they provide useful guidance and, again, if you look at the appendix and the materials that are on the web site, actually, they are all very well anchored within the context of the hearings and what came forward to the committee around all the special populations and both federal and state needs in this area. So, let me stop with that and open it up for comments.
MR. COHN: Let me start by just sort of giving everybody how we are going to discuss this. This is not an occasion for word smithing at this point.
I think whatever we pass or decide to vote on will, of course, be subject to further word smithing coming forward.
This is a time, if people have conceptual issues or conceptual problems with the document, things that are beyond word smithing or questionable in their significance, I want to assure you if you don't like a word, or you think a sentence is off or it needs a paragraph placed or a comma, we can handle that off line. So, with that, we will open the floor up for comments.
MR. TANG: I congratulate the subcommittee for a really, really fine job and fine report. It was a good read. When I think about this and reflect on what you said, I see four categories in terms of gathering this data.
One is how to ask for it. Another is how to collect it and store it in a way that usable. A third is how to interpret it and a fourth is how to protect it.
I think you addressed all four of those categories in the report. The only thing I would submit for your consideration is to emphasize a little more on one and three, which is the asking problem and the protecting problem.
The asking problem, it seems like -- and you called it out in terms of ways to increase self reporting -- it seems like that is a major obstacle.
Clearly, we have to deal with the information and the granularity and the specificity and the standardization that you are requesting, but how to get people to self report, I think you can see both ends of the spectrum, people who are afraid of being discriminated again, as well as people who don't even want it to be considered at all even if it could favorably enhance their chance as some thing, and then there is the middle.
It seems like that is a major barrier, and I don't know to what extent you can explicitly ask for studies to look at how to encourage those things. You did talk about it, but again, it is just a matter of emphasis.
Then, on the other side, how do you protect it once you have gotten it, coded it, and used it, in formulation of health policy, certainly, in the privacy subcommittee we hear about how other health information is maybe used and reused in different ways.
It is certainly something that could be of concern to a population, and how can we work on assuring them that their information is protected, and helping them understand for what purpose it is going to be used, and for what purposes it can't be used, those kinds of things. It is a matter of emphasis.
MR. STEINWACHS: Let me just pick up on that and make sure -- we have tried to address those. I think what you are saying is that there could be a different kind of emphasis placed on some of these.
At the same time, I guess, we felt we could only go so far based on the hearings and what we had heard at that point in time, and this really brings together about three to four years of that.
I am just, I guess, throwing this back to you, and again, this may not be what you think is the appropriate thing to do.
The points you have made also, it seems to me, play into things that this population subcommittee might address as it moves on, because this doesn't end the issues that relate to race and ethnicity.
This capture, I think, has done just what you said, identified there are some serious problems, and we talk about people's willingness to do it.
If it was just -- I was hoping -- and you can correct me -- that if it was somewhere either in conclusions or executive summary, a little bit of word smithing, we would very much welcome that.
I was hoping it wasn't a matter of trying to reshape specific strategies here at this point, or the overall recommendations.
MS. MAYS: I thought your suggestion is a very good one. It is in there, and what I hope would be is that someone either like NIH would pick it up as a research agenda -- because we actually suggest it as research.
Also, if the linkages that are suggested here take place, say the linkage between HHS and the Bureau of Census. The Bureau of Census actually has some work on this. NCHS actually has dealt with some of these issues in terms of their studies.
I think that the strategies that have been suggested, that if they were to be put into place, would actually answer what some of your concerns are.
I agree, probably the two biggest issues are if people will tell you their race and ethnicity, and then what do we need to do to assure them that they are not going to be treated differently because we have that piece of information.
MR. STEINWACHS: At the very least.
MR. COHN: I guess I should ask, Paul, I am seeing you nodding your head. Does that mean what they have said is sufficient, or does there need to be, at this point, some changes to the document?
MR. TANG: Yes, and again, it wasn't something that was not in there. It is a matter of emphasis and perhaps a way of diffusing questions that could be raised as you read through this the first time. I think that is more my point.
MR. COHN: Maybe there is a way of framing the executive summary.
MR. STEINWACHS: Anita and I were whispering here. A little word smithing, I think, will do what Paul is suggesting.
MR. COHN: Paul, thank you. I think, once again, it might help improve the executive summary, which is really the place where this all gets set up.
MR. VIGILANTE: This is, by no means, criticism of the report, because I am on the committee and I wouldn't criticize it.
This is something that is in the report that I just wanted to bring into somewhat bolder relief in light of Jean's comments, actually, about where we should be looking for things where we think we may not know enough.
The report, one of the main themes in the report, or suggested strategies, is to produce greater linkages between different kinds of data sets.
It does recommend a linkage to the Department of Education. This is one that I would just like to, while Dr. Sondik is here, to kind of pull out a little bit.
As many people sitting here know, one of the best predictors of the health status of a population is their highest level of educational attainment, on average.
The strong association, some have suggested that there may be even some causality associated with actual education in achieving health status, and have posited that one way to improve health status is to actually just increase, not the health intervention, but increasing level of educational attainment.
By and large, the same populations who have health disparities have educational disparities. So, I think that particular linkage is extremely important, both in the government space, to be linking health data and surveys with educational data and surveys, and also in the academic environment.
The more we can link those, the more I think we can identify strategies for improving health disparities that are somewhat outside the health bucket, and health people don't necessarily always think of them.
You go to a baker, you get bread. You go to a health person, you get a health solution like access. Really, the problem is more holistic than that.
By incorporating educational interventions in our unending quest to improve or mitigate against health disparities, I think, is an important national agenda. One person's point of view.
MR. COHN: Maybe I should let Don or Vicky try to respond. I am trying to see whether it is in there.
MR. VIGILANTE: It is in here.
MR. STEINWACHS: I think it is in here. Kevin is putting some additional emphasis on it. Very clearly you see in this report that we ought to be doing linkages that get out of just health, and you could think of linkage as labor, education and other areas.
MS. MAYS: I would just say, I think we have listed several different linkages that could benefit, and I think what Kevin is doing is emphasizing the one with education.
I think, again, this is like one of these wonderful moments in terms of having Dr. Sondik here, because it is not just work to send to the Secretary, but it is the emphasis that you see in other areas, like the work of NCHS.
At least when I was on the committee, we would get U.S. Health. I think you said earlier that may be a place that, when this comes, to actually see if any of those types of analyses are there, and to send it back and suggest, if they are not, to do them.
MR.COHN: Well said.
MS. GREENBERG: I just can't resist comment on this as sort of the committee historian around the table, not just to give you a little history lesson, but also to think about future agendas.
I believe it was in 1992 that this committee recommended that there was essentially a lack of any kind of socioeconomic variable in the uniform data sets that were used for administrative data, hospital and ambulatory, et cetera, and that looking at what the typical ones are -- and of course those are discussed in the report -- the one that is a high predictor and perhaps the most feasible to collect would be highest attainment of education, seeing that it was unlikely that you would start collecting income or even -- with all the problems with coding -- occupation, et cetera.
That, I don't think that recommendation was ever adopted in these administrative data sets and, of course, one solution is these linkages, if they are possible.
Also, now that we are moving more into electronic health records and looking at the sort of core data you might want in a personal health record and an electronic health record for quality, et cetera, I think it is worth revisiting some of those earlier recommendations, because the committee has a long history of feeling that that would be a positive thing.
Obviously, we have moved beyond that to socioeconomic position, et cetera, and there is a whole lot more to collect in surveys.
When you get down to administrative data, or when you are very limited in what you can collect not in a survey environment, then it is a good thing to revisit.
MR. COHN: That is a comment; right?
MS. GREENBERG: I think it could be on the agenda of several subcommittees in the future.
MR. COHN: I just wanted to clarify. Ed, I think you had a question or comment.
MR. SONDIK: Just a comment related to these. I may be missing it in the report, but while there is discussion of linkage, it comes across as linkage within the department, as opposed to the point that you were making, at least as I interpreted it, that there could well be data sources outside.
Then, of course, there is linkage and linkage. One of the real challenges is in linking surveys in which the respondents aren't the same, but that is just a challenge. That is all that is. Clearly, it can be done.
In fact, in one survey, the survey on family growth, the last production of that survey had an allied data set. I always blank on the name of it, that was a data set that gave information on the locale, on resources.
MS. GREENBERG: Oh, the HRSA data set, the ARIAS?
MR. SONDIK: They particularized it so that it could actually be used with the data that was actually collected in the national survey on family growth.
I thought that was a terrific step forward. I can't tell you at this point exactly how it has been used, but I think it is very important, because particularly in that survey, it gave information on the educational facilities, the health facilities, and a variety of other things that would conceivably be important as you look at these patterns.
My point is, I think you could make a stronger point in here about linkage on both levels, outside of the department and the challenge of it, which fits definitely within the structure, and the fact that there is linkage and linkage.
We ought to really be pursuing how to make the most of the data that does exist. I am convinced we don't always have to go out and collect new data. It would be ideal, but clearly we can't do that.
MR. STEINWACHS: We very much agree with you. We tried to capture that, but I think you are saying it could be strengthened.
On the bottom of page 15, top of page 16, where we talk somewhat about socioeconomic status, and variables, as well as others that could be found in the Census, the American community survey, current population surveys, and try to begin to talk about linkage to put in some of those. I think what you are saying is this could be strengthened.
MR. SONDIK: I think it would add another flavor to it, to mention surveys that are not the census activities.
When I think of the census, I think of something that is very broad brush. When I think of something from the Department of Education, for example, of Justice or whatever it might be, I think more of specific topics, if you will, thank demographics.
MR. STEINWACHS: Let me just finish. Maybe, I think, again, we could make it clearer, but we also talk about surveys also should capture information on a range of contextual variables found to be explanatory, health differences such as social support, social networks, social cohesion, community involvement, perceived financial burdens, differences in health status, foreign born, U.S. born individuals, and so on. Maybe what we can do is take this and --
MR. SONDIK: I though the way Kevin said it was compelling. I think the way it is written is less so.
MR. SONDIK: We can do some editing here, word smithing.
MS. MAYS: Probably the word smithing is linkage. I think the way that you said it allows there to be an emphasis of, it is not just across agencies, but the linkages that have nothing to do with collecting extra data, but have to do with facilitating the ability to be able to do linkages across surveys. It is very friendly word smithing. So, I think it is fine.
MR. COHN: Vicky, I guess I would ask on this one, do you feel that that information is already in here?
MS. MAYS: Again, I think it is one of those where you put another sentence that is explanatory to the front of it, and you give an example of a couple of data sets.
MR. COHN: Okay, well said.
MR. STEUERLE: I was just going to say, just follow up on that, maybe we should just put in some parentheses, a couple, two or three examples that people might suggest to you.
One of my favorites is, I have been involved with the linkage of the survey of income program participation with social security records, and we have been able to figure out the effects of mortality on benefits.
It is not a pure health issue, but health is there, but we haven't linked to the medicare records. It is an ideal example of something that would give us a lot of information.
It has education status, it has lifetime earnings, and if we could link it to the medicare records, we would have at least some health outcomes, although we wouldn't get the younger population. We could give three or four examples like that. I think it might make clear that there are different types of linkages.
MS. MC CALL: Very quickly, I think that the structure of the strategies and the recommendations are going to be well suited to enhance this.
If you look at essentially one-A and look down at what is listed there in one through eight and, in particular, in probably the first four, it is really about conferences to get people together so that best practices are shared.
Maybe just adding some specific recommendations, if you look at number four, this is really about mechanisms, to work not only with other agencies, we could broaden that, and it is also on practices, not only on methods for collecting, but also on classifying, and cross walks between one type of classification in an existing data asset and another, so that they can become linked and, therefore, looked at and understood in combination.
So, if we just enhance them in those specific ways, maybe again with some specific examples of what we mean, I think that the way that this is laid out can naturally be enhanced to call forth those types of partnerships and those types of linkages.
MS. CAIN: I had just wanted to comment that NIH has been taking that approach in several different areas for several years, and a couple of examples.
We are collaborating now on the ECLES B early childhood longitudinal survey birth cohort, which is a Department of Education survey, had very little health information in it, and NIH has sponsored the collection of health information.
Another one that we have, many years ago, co-sponsored were the Bureau of Labor Statistics surveys, national longitudinal surveys.
Again, at that point, there was very little health information. We supplemented it, and have been long-term sponsors of those to include health information.
MR. COHN: Thank you. Were there any hands? That is how it is with reports sometimes. After so much, it is hard to focus on them.
I want to just sort of comment from my own reading of this. Obviously, there is word smithing that needs to be done, but overall, I think it is an excellent report, and I think it has come a very long way and has gotten very well focused.
So, what I am hearing is probably that last percent here that we are sort of dealing with at this point, as well as recognizing that there are other things that are beyond the scope of this document.
I guess we should ask, I am hearing things that are probably -- Don and Vicky, give me your sense. It sounds like a little bit more than word smithing, what we are describing, but are these things that we have just talked about things that could be worked on in the subcommittee and brought back, just to show how those changes would be incorporated?
MS. GREENBERG: Do you mean tomorrow?
MR. COHN: That is what I am wondering, or should we take a different path on this one, or if you feel they really are word smithing, then we can sort of deal with them in another method.
MR. STEINWACHS: I guess I mainly saw it as word smithing.
MR. COHN: If, indeed, it is word smithing, one option that we have is to actually pass this, refer the changes to the executive subcommittee, let them do the final fiddling and then we can be done with it. I see people nodding their heads at the second one? Jeff, please.
MR. BLAIR: This draft letter has been worked on for quite a long time, and I think that everyone who has read it feels like it really is done very well.
Could I express my sense that, even though there might be some word smithing, that we would make every effort to try to get the full committee approval for this at this session, so that it is not deferred another three or four months.
MR. COHN: Jeff, am I hearing this as a motion to pass?
MR. BLAIR: No, maybe what I was expressing was more of maybe a strategy, that if there is -- it is that idea of let's not let the perfect be the enemy of the good. I think this is already very good.
MR. COHN: Okay. Jeff, I think you may have derailed us a bit, because I think what we were moving toward was the idea of potentially bringing this forward to a vote at this point, with the idea that the executive subcommittee would do further word smithing on it and approve it.
MR. BLAIR: May I withdraw and I apologize?
MR. COHN: That is fine, but if you have an alternative motion, we are happy to consider that, or make that motion.
MR. BLAIR: I would like to move to approve this draft.
[Motion seconded.]
MR. COHN: With further word smithing to be performed. Is everyone comfortable with that? I don't think there will be changes that occur by tomorrow that are going to make any significant difference in this.
If anything is beyond word smithing or as Kevin described it, emphasizes something that is already there, it will come back to the full committee.
MR. SCANLON: You mean to the executive committee.
MR. COHN: Well, no, if there is anything that is a substantial change, it would come back to the full committee. If it is word smithing, an extra sentence here or there that just emphasizes things, the executive subcommittee will handle it. Is everyone comfortable with that? Is there a second?
MR. HUNGATE: I second.
MR. COHN: Very well, all those in favor?
[Vote in favor of motion.]
Opposed?
[No voices heard in opposition.]
Extensions?
[No voices heard.]
Well, congratulations.
[Applause.]
MR. STEINWACHS: Let me just add my thanks to staff, because there was tremendous work, along with Vicky, and we had a writer, Anne, who were working to bring all this together. So, there was a lot of teamwork.
MR. COHN: Again, the chair and the full committee express great appreciation to both you and Vicky for your work on this.
MR. STEINWACHS: Simon, I don't know whether we have time now, but if we did, the subcommittee would very much welcome suggestions for how we can most effectively disseminate this report.
At least our sense of the audience -- and I think Ed was getting at this -- is the department is important, within the department, but to get outside to other departments within the federal government to be able to disseminate to states, to interested groups in the community who might see this as providing some direction for how they can work with government agencies to better use the data and get the access that they need, and the ability to analyze and understand relevant data.
MS. MAYS: I just want to make one request, because it is something that we heard really clearly in our hearings, particularly with the American Indians, is that we not just have it in a form that is up on the web, but that we actually print it up.
One of the comments we got was, especially for a document that will be kind of this size, that they were just not able at times to rely on technology as the only way to receive information.
I think if possible, Marjorie, I don't know whether or not, as reports are, to have a little executive summary and then the whole report kind of thing, so that it can actually be mailed out or given to people.
A lot of the people that came are like some of the community groups. If that is possible, as part of a dissemination strategy, that we heard from our audience that it would be really useful.
MR. STEINWACHS: Certainly if we could find a way to disseminate it in a hard copy form that is nicely packaged.
MR. SONDIK: I was just going to say that the committee could certainly send it to Kathy Walman at the OMB for distribution to the federal statistical agencies.
She meets regularly with those and chairs the interagency council on statistical policy. It would, I think, be at a minimum very interesting for them to see the work of this committee on this topic.
That would disseminate it throughout the federal statistical system. It could also take another channel -- this is obviously up to the Secretary -- but at the cabinet level.
As a product of this committee, you advise the Secretary, and the Secretary could share it. Certainly by going to the ICSP, it will go to the other statistical agencies, including Census, the Center for Education Statistics, and so forth.
MR. COHN: Other thoughts or suggestions?
MS. TRUDEL: I just wanted to follow up on something that Ed said. I am looking at the Secretary's 500 day plan, and this report certainly does link up with the idea of closing the health care gap and eliminating inequalities in health care. This fits right in here.
MS. GREENBERG: That is a good suggestion for including in the letter of transmittal.
MR. COHN: Other thoughts? I guess I would sort of pipe in that I know that NCHS has a users meeting. It may be something to --
MS. GREENBERG: Are we having one in 2006?
MR. SONDIK: Yes, we are.
MS. GREENBERG: We could certainly disseminate it there.
MR. COHN: Things like that, as well as the public health data users group, which I think you are one of the founding members of, might be a useful place also to get it out.
MS. GREENBERG: We exhibit at various meetings, like the National Association of Health Data Organizations, APHA, et cetera.
So, if we can get it reproduced in a hard copy, then we can have some copies there, and refer people to the web as well.
MR. SONDIK: The data council, of course.
MS. GREENBERG: Of course. The transmittal letter will be to the Secretary with a cc to the data council. I think, as we have done with other reports, it would be a good idea to ask Don to present it to the data council, and possibly bring in Vicky for that as well. Jim isn't here right now, but we know the executive secretary of the data council would agree.
MS. MAYS: One more suggestion I would have is that most of the individuals that came to the hearings -- Audrey, am I correct -- we have e mails for them. It might be useful to be able to just send them an e mail telling them of the availability, and they can either ask for it or go to the web site.
MS. GREENBERG: Who is this?
MS. MAYS: I think we have probably a different group of people who actually came to the hearings. I mean, we had one of the hearings where we probably had over 100 people attend, we had other hearings where we had a lot of community groups attended.
Each time they signed in, they got e mails for them. I think it is like giving back the report so they can see it.
MS. GREENBERG: Actually, if we reproduce it, we can send copies to all of those people. We have certainly done that in the past, and I think it would be appropriate.
MS. MAYS: Thank you.
MR. STEINWACHS: Thank you very much.
MR. COHN: Thank you. Congratulations.
MS. MAYS: Thank everyone for their hard work on this, also the staff. I also wanted to make sure they were acknowledged in terms of helping bring this together.
MR. COHN: Now, our next item is the 2003-2004 report.
Agenda Item: NCVHS 2003-2004 Report.
MR. COHN: I am actually divided. I am uncertain of how best to bring this forward to you. Let me tell you my sort of blunt analysis of it, and then I need your guidance in terms of how we bring this forward.
I think overall this is very good, but I think the recommendations for HHS policy research agenda and the looking ahead need some significant redrafting.
MS. GREENBERG: And we need the preface and the forward.
MR. COHN: You need the preface and the forward and probably a picture of John Lumpkin and you need all of those other things.
I think, given that, I think we will maybe have this be an actual action item for September, but I think we wanted to get confirmation from all of you that the first part, which is the great bulk of the document -- really goes up to page 16 -- is really fine, which is my assessment at this point, but we do want to not have to re-discuss that in September if we can avoid it.
MS. GREENBERG: Particularly the subcommittees, we have had some interaction with you all, obviously to try to make sure that it reflects your accomplishments and agenda, et cetera.
That would be all the way up to page 16. So, we will -- unless we hear otherwise today, we will assume that it does, and then we need to work on those last pieces.
MR. COHN: Anybody have any comments on this? Maybe we can talk about the research and the looking forward.
MR. STEINWACHS: Simon, I would agree. I thought mainly, at least when I was reading it, the looking forward, I thought, was something that each of the groups would want to pay some attention to, to make sure that really, certainly for the populations subcommittee, that is part of it, and I am sure the quality work group, too, we would like to make sure are in here.
The accomplishments, I thought, were well stated, and the role of populations in this I thought also came across very nicely.
MR. COHN: Okay, good. Any other comments on the first 16 pages, and then we can talk about maybe the research and then actually looking forward and then back to research.
Does anybody have any other comments about the first pages? I thought standards and security looked well represented, privacy did well, quality I thought reflected accurately what was going on. The NHII work group, obviously, was also referenced. I think it is actually very well put.
This actually may be some help that maybe we could ask the population subcommittee to think about a little bit. Now we are talking about the research agenda.
I know we had gone from trying to list out every research item in the last five, six, seven years in any of the documents in here, which didn't come out.
At least from my view, it didn't sort of make sense. These were like bulleted items pulled out of various reports.
MS. GREENBERG: It was out of context.
MR. COHN: It was out of context, and some of them looked sort of very dated in the recommendations. It is really not what we wanted to talk about.
I guess to me the real question is, I think we are all in favor of a more robust research agenda relating to HHS information policy, but then the question is, well, what are we talking about.
I guess I would look maybe to the population subcommittee. Once again, it is something that is maybe a little different than just reflecting on previous documents, that isn't a litany of very specific items, but is more either high level things that we need to be looking at or whatever.
I am sort of thinking of sort of bullets with a sentence or just bullets or whatever, either as examples or whatever, that might help finish this off.
The wording in here is really not bad. It is just that it sort of doesn't come to a conclusion, as best I can tell, in terms of a research agenda. I guess maybe if we could get some help, would that be a reasonable request?
MR. STEINWACHS: I am sure we would be happy to do so, certainly.
MR. COHN: Especially with bounding the activity.
MS. GREENBERG: The other thing is, it does strike me that a lot of the populations letters or reports that are referenced here, I think you picked up on the recommendations that you thought were the most salient or whatever in this report now.
I think not only the population subcommittee, but all of the subcommittees that have put forward recommendations for research in the past need to maybe periodically revisit those, and see whether this work that they want to do to try to take this to the next step, or to bring it up again.
The way this all started was a discussion that we had at the executive subcommittee, and there are very specific recommendations that are made, and particularly in response to a request from the department or from congress for recommendations.
Generally, we know what happens to those, or at least to some extent, and there is a more direct response, but with some of these research recommendations, which you can't just implement on a dime, they kind of are out there in cyber space, and there is not a good sense that they have a home or that they are responded to.
So, I think that it is hard to capture. I think the language that is here attempted to capture that to some degree, but I guess I still feel it is appropriate for the different subcommittees to look back at some of these and say, is there further work we need to do, first of all, to find out has any of this research been undertaken and, to the extent that it has, learn more about what the findings were and, to the extent that it hasn't, do we want to raise this again in another venue, so that they don't die.
MR. COHN: But that is not really a part of this. That is not this report.
MS. GREENBERG: That is not this report, no, and I mean it might be the way to just deal with it. I think it relates to looking ahead, actually.
MR. COHN: You are right, that may. Obviously, I am thinking of this one at the level of, we might have privacy or -- Jeff, maybe you have some help on this one.
MR. BLAIR: I don't know if I have help so much as sort of a basic question. We have different mechanisms for providing status information, reference information and other mechanisms for making our recommendations for action.
This report confuses me a little bit, because I have always thought of this as kind of a status or reference document.
It may be a weak mechanism to make any kind of recommendations and, in this case, recommendations for a research agenda.
So, if this is a good mechanism to set forth those recommendations, could somebody -- can somebody clarify that, as to why we would be doing those in this document?
MR. COHN: Jeff, you bring up a point for all of us to ponder.
MS. GREENBERG: Interesting point. We have, in the past, we have used the annual report as a way to highlight -- I remember a special section we did on socioeconomic, I think, status in one report. So, we have done that. So, there is some precedent for that.
What you are saying is, this is maybe -- I guess I was kind of saying that, too, although you said it better than I did, that this is maybe not the best mechanism.
I am thinking that maybe, when we did think about using this mechanism to try to highlight some of those research recommendations, it maybe wasn't the best way to do it.
That is why I was suggesting that another way would be to revisit some of them and then maybe resurface them as a letter recommendation or something like that, where they would get more attention than in a document which is primarily historical, although we do always have something in it about reflecting on not only the past but also the future.
So, I think I agree with you, that if there are specific recommendations that have been made in the past and we feel they have languished, this may not be the best way to revitalize them.
MR. SCANLON: Yes, this is a way to guarantee they will continue to languish, especially on page 17. I think the other issue is that, you know, in a way, by trying to highlight them here, it is sort of suggesting that these have priority over -- that these are the only ones, and these have priority over anything else, and I don't think that is the case.
I thought we talked about using this as a basis for, if you are serious about an analytic agenda, that you would use that as the basis for moving forward.
Some of these, honestly, were not taken up because there was just no interest. Why would you come forward again, when you probably have some new ideas now, after a benefit of the year or so. I honestly don't see the purpose other than documentation, to highlight these.
MR. BLAIR: Could I then make a suggestion, given the reactions to my first question. I think maybe the linkage is that, in order to make a compelling case for investment in research, the information, the historical information in this report could be helpful.
So, maybe, if we later have a separate recommendation letter, with the single purpose of setting forth a research agenda, that this report is an attachment or an appendix to support, and put in context, the need for the research agenda.
MS. GREENBERG: I know some of the subcommittees right now, like the NHII work group, are looking at contributions to such a research agenda.
I think Jim makes a good point, that this was kind of an exercise in which we tried to go back to see what was there. It may serve a purpose for a future research agenda, but it may not add that much to this report.
MR. HUNGATE: I want to try a different tack on the committee, and think about what I regard as a centrality of the Healthy People 10 year program, around the health of the population.
We are talking about population health, and it seems to me that we are also strategically talking about public private partnerships.
I would like to find out if the healthy people structure of looking at the health of a population is used in any other way by other organizations.
In other words, there is a way of looking at the health of the population as put in the Healthy People 2010, and it is a repeated way of doing it.
It deals with race, ethnicity, the variables that are within that. That structure, it seems to me, could be useful in the private sector for people to look at the health of their populations.
I would like to find out -- and this is a macro kind of a question -- whether that is happening, whether that occurs. Does that make any sense?
MR. COHN: I hear what you are saying, Bill, but I think you are beginning to convince me that this is not part of the biennial report, but is a separate investigation if we would decide to go forward on it.
I mean, that is what I am hearing. I don't in any way disagree with what you are saying, but as I am listening to it and looking at that, that isn't this report. So, I agree, and you are beginning to convince me that we should take the whole section out.
MR. STEINWACHS: So, Simon, I wonder, can we drop this section or can we just have something that indicates that, within all of the reports and recommendations and so on, there are also considerations given to what are needs for new research, new methods, new information?
MS. GREENBERG: And if the committee really does want to take this seriously in the future, or make a serious effort, it could just be referred to in the looking ahead section.
MR. COHN: I think what we can do is -- I think what I am hearing is, we are not going to spend time with the population subcommittee trying to come up with a research agenda.
We will look through the first couple of paragraphs here. If there is something still left, that sort of talks about the importance of research, but leave it at that level, and we will see if that is even valuable. Otherwise, we will remove the section, and we will bring that back to you in September and discuss it with the executive subcommittee between here and there. Does Susan have a comment on it? I think that is where I am sort of coming to with this conversation.
MR. STEINWACHS: That would make sense to me, at least.
MS. KANAAN: This is Susan. I do strongly favor the idea of removing this section. I think it is anomalous in all sorts of ways.
It was worth the effort. It seemed like a good idea at the time, but I think it is clear to everyone that it doesn't really work very well. It needs much more development to be meaningful, and the more it is developed, and the