[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Hubert H Humphrey Building
200 Independence Avenue, SW
Washington, D.C.
DR. COHN: I want to call this meeting to order. This is the second day of meetings of the National Committee on Vital and Health Statistics. The national committee is the main public advisory to the U.S. Department of Health and Human Services on national health information policy.
I am Simon Cohn, the Chairman of the committee, and the Associate Executive Director for Health Information Policy for Kaiser Permanente.
I want to welcome committee members, HHS staff and others here in person. Also welcome those listening in on the internet, and, as always, we want to remind everyone to speak clearly and into the microphone, so people can hear.
With that, let's have introductions around the table and then around the room. For those on the national committee, I would ask if you have any conflicts of interest related to any of the issues coming before us today, would you so publicly indicate during your introduction?
Obviously, after the introductions, we'll talk about the agenda and other issues for the day.
Jim.
MR. SCANLON: Good morning, everyone. My name is Jim Scanlon. I am with the Office of the Assistant Secretary for Planning and Evaluation here in HHS, and I am the Executive Staff Director for the full committee.
DR. HARDING: I am Richard Harding. I am Chairman of Neuropsychiatry at the University of South Carolina, and a member of the committee. No conflicts at the present time.
MR. ROTHSTEIN: I am Mark Rothstein from the University of Louisville, School of Medicine. I have no conflicts today.
MR. BLAIR: I am Jeff Blair of the Medical Records Institute, member of the committee. I am not aware of any conflicts for today.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the committee.
DR. HUFF: Stan Huff with Intermountain Healthcare and the University of Utah in Salt Lake City, a member of the committee and no conflicts for any subjects today.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, and no conflicts.
DR. SCANLON: Bill Scanlon with Health Policy R&D, member of the committee and no conflicts for today.
MS. BEREK: Judy Berek, CMS liaison to the committee.
MS. MC CALL: Carol McCall with Humana's Center for Health Metrics. No known conflicts for today.
DR. MAYS: Vickie Mays, University of California, past member of the committee. No conflicts.
DR. LOCALIO: Russell Localio, University of Pennsylvania School of Medicine. Member of the committee. I have no conflicts.
DR. LENGERICH: Gene Lengerich, Penn State University and former member of the committee. No conflicts.
DR. ROBBINS: Aldona Robbins, Board of Scientific Counselors, National Center for Health Statistics and - liaison to this committee.
DR. SONDIK: Ed Sondik, Director, National Center for Health Statistics, liaison - is that the right term? - to the committee.
MR. MELNICK: I'm Dan Melnick. I am a consultant to ASPE, and I am here to make a presentation a little later on in the morning.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and Quality, liaison to the committee and staff to the Subcommittee on Standards and Security.
MR. HOUSTON: I'm John Houston. I'm a member of the committee and I am from the University of Pittsburgh Medical Center. I have no conflicts.
DR. CARR: I'm Justine Carr, member of the committee, Beth Israel Deaconess Medical Center. No conflicts.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins University, member of the committee. No conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, Sutter Health. Member of the committee. No conflicts.
DR. STEUERLE: I'm Gene Steuerle from the Urban Institute. As far as I know, I have no conflicts, other than I used to work with Aldona Robbins, and so I'll probably tend to agree with her. (Laughter).
MR. REYNOLDS: Harry Reynolds, Blue Cross and Blue Shield of North Carolina. Member of the committee and no conflicts.
DR. WARREN: Judy Warren, University of Kansas, School of Nursing, member of the committee and no conflicts.
DR. LUMPKIN: John Lumpkin, Robert Wood Johnson Foundation. I have a teenager, so I've got a lot of conflict at home - (laughter) - but none that apply here.
MS. GREENBERG: That is an old favorite line here.
Marjorie Greenberg, National Center for Health Statistics, CDC, Executive Secretary to the committee, and, fortunately, I do not have any more teenagers.
MS. DAYTON: I am Liza Dayton with the Agency for Healthcare Research and Quality.
MS. JONES: Katherine Jones, CDC, National Center for Health Statistics and staff to the committee.
MS. WATTS: Patricia Watts, Veterans Health Administration.
MS. STITSEL: Kim Stitsel(?), Office of Disease Prevention and Health Promotion.
MS. TRENTIE: Nancy Trentie(?), American Psychiatric Association.
MS. POKER: Anna Poker, staff lead to the Quality Subcommittee and staff to the NHII.
MS. DAYTON: Do it again. I am Liza Dayton with the Agency for Healthcare Research and Quality.
MS. PICKETT: Donna Pickett, National Center for Health Statistics, CDC and staff to the Subcommittee on Standards and Security.
MS. BOWMAN: Sue Bowman, American Health Information Management Association.
MS. BURWELL: Audrey Burwell, Office of Minority Health and lead staff to the Subcommittee on Populations.
MS. GRANT: Miriam Grant, Office of Minority Health.
MS. FRANKLIN: Angela Franklin, Blue Cross Blue Shield Association.
MS. HOLMES: Julia Holmes. I am from the National Center for Health Statistics, and I am staff to the Workgroup on Quality.
MR. HITCHCOCK: Good morning. I am Dale Hitchcock. HHS, Office of Science and Data Policy and staff to the committee.
MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics, CDC and staff to the NHII Workgroup.
DR. EDINGER: Stan Edinger, AHRQ and staff to the Quality Workgroup.
DR. COHN: Okay. Well, welcome, everyone.
Before I start out with the agenda, I just want to take a moment and acknowledge a couple of individuals, and, I mean, we talked yesterday about people who were going to be finishing their terms on the committee. Gene Lengerich was not there at that point. We did say nice things about you, but, now, since you are here in person, we, obviously, want to thank you for your contribution to the committee, and especially the Subcommittee on Populations. So thank you for your contribution and participation.
DR. LENGERICH: Well, you are welcome. It has been my pleasure, and I look forward to being that free consultant in the future. (Applause).
MR. SCANLON: We have a special appreciation from the Secretary.
DR. COHN: Okay. We actually have a certificate for you from the Secretary, along with a letter, and it reads, "Dear Dr. Lengerich, it gives me pleasure to award you this certificate of appreciation for four years of service to the Department as a member of the NCVHS. This committee is one of the oldest and most prestigious advisory groups serving the Department. Its recommendations have helped shape health statistics, health data standards and epidemiology for our nation and have had a profound impact on new legislation.
"Your knowledge, expertise and experience have contributed greatly to the excellent work of this committee. We wish particularly to commend you on the time, effort, leadership and counsel you provided as a member of the Subcommittee on Populations, which we already referenced.
"Only the best are asked to serve, and we are proud to have had the opportunity to associate with you in this endeavor. Should the occasion arise, we would like to feel free to call upon you for further assistance."
And it is signed Michael Leavitt.
MS. GREENBERG: That's the clicker(?) last line.
DR. COHN: (Laughter). As Marjorie has commented, we don't let people off easy on this committee. So thank you, and this is your -
MR. SCANLON: We'll give it to Gene - You're in the reserves now. (Laughter).
DR. COHN: Yes. Yes.
Now, I also want to acknowledge Aldona Robbins. I don't know whether this is your last session or not. We were unsure about that one, but you are, obviously, as I understand, finishing your term on the Board of Scientific Counselors and had been liaison to the committee, and, obviously, want to thank you for your participation and involvement with us. So thank you.
DR. ROBBINS: Well, thank you. I have enjoyed it and learned a lot.
DR. COHN: Yes, and we may very well see you in June, too. So we'll - (laughter).
DR. ROBBINS: And you very well may, and if not me, someone even better. So -
DR. COHN: Okay. Well, let me just talk about the agenda for just a second.
We have asked - well, actually, John Lumpkin, as retiring chair, has actually asked to make a few comments, and we are going to actually let him talk to us for a couple of minutes, right after the agenda, but I -
Obviously, John will start out. Then we will have a briefing, a report from the National Center for Health Statistics, Ed Sondik, as well as an update from the Board of Scientific Counselors, Aldona.
Then, we are going to be talking about geocoding, Dan Melnick and Andrew Dent.
Now, I want to ask the full committee, we obviously have a couple of work items following. Right now, we are scheduled to take a lunch break and then deal with those. Would it be in the interests of the full committee to just continue - taking like a five-minute break and finishing early? Would that work for everyone?
MR. BLAIR: Yes.
DR. COHN: Well, as I said yesterday, we try to finish on time, and, actually, in the tradition of our departing chair, we actually try to finish early. So we will do the best we can. Obviously, I can't tell you when the final end time is. It will basically depend on the letters that we still have to consider, but hope - we will certainly, hopefully, finish in the one-ish time frame or whatever.
So with that, John, I am going to let you lead off, and, obviously, thank you for being here this morning.
DR. LUMPKIN: Well, thank you. Certainly an honor to have the opportunity to address you for one last time.
I guess I just want to start off by noting two significant events that sort of bookend this committee. As Simon said, this is one of the oldest advisory committees to the Department and consistently advisory.
When the committee was just started, the Chairman of IBM said, You know, I think the worldwide market for computers is maybe about five, and at the other bookend -
MR. SCANLON: 1949.
DR. LUMPKIN: That's right.
MR. SCANLON: 1949.
MS. GREENBERG: 1949 he said that?
DR. LUMPKIN: Yes, he said that.
SPEAKER: Those were the card-sorter days. (Laughter).
DR. LUMPKIN: Yes. Obviously, he was wrong.
And then sort of bookend with the fact that I think it was yesterday or the day before the second house in Tennessee passed legislation adopting a law to have the government in Tennessee develop a regional health information network, so that, you know, we have really seen a dramatic growth.
I came to the committee in 1996, and, for those of you who were there last night, that was the days when we were talking about HIPAA. I think we referred to it as Kennedy-Kassebaum, and we actually talked about it and called it K2, and the reason why we called it K2 was because K2 is like the second tallest mountain in the world, and so it wasn't the highest thing to get over, but it was pretty darn high, and it was the work of the committee - and Simon, last night, erroneously gave me credit for the fact that I chaired the Standards and Security. While that is true, it was Simon, it was Karen Trudel, Jeff came on. I mean, there was just a whole host of folks, and that is probably an ongoing theme about the work of this committee. It is actually relatively easy to sit in the chair that Simon is now moving into, compared to the seats where you're at, and particularly in - you know - the people who are heads of the subcommittees and the work groups, because that is really where all the work of the committees has been done and continues to be done.
And this committee was recently reviewed - I think it was - was it GAO that did that or OMB?
MS. GREENBERG: GSA.
DR. LUMPKIN: GSA, and they were looking at efficiencies of various advisory committees, and this committee came out, if not on the top, pretty close to the top.
Over 70 percent of the recommendations of this committee have been adopted by the Department, and that is no small wonder that that happens, partly because - you know - as we talked yesterday, there is a partnership between staff on the committee and the members of the committee. It is an opportunity to come in, and what has really been neat about what we have done as a committee is that we have aided the Department in developing their mission and their vision, and it is not antagonistic. It is a collegial partnership relationship, and so it has really been an honor to have the opportunity to address it, to first focus in on HIPAA, to change the paradigm and say that - you know - it is great to enforce it, but let's - you know, let's have the department lead by example, and the Consolidated Health Informatics Initiative, which we partnered with them and passed the recommendations changed the environment so that we went from a regulatory environment to push the health informatics - health information technology world forward to a much more leadership, and considering the fact that HHS, through its various programs, provides or covers healthcare insurance for over 100 million people, where HHS leads and the federal government leads, others will follow.
We are now in a very important time frame. You know, if someone would have told me three years ago that the President of the United States would be hitting the stump on health information technology, I would have really asked whether or not they were - you know - not only smoking, but inhaling - (laughter) - and we have seen that sort of transformation.
So it is really a point and a pause in time. This committee, through your work, has made a major difference, and probably when we look back on this time frame in history, we'll see the work of this committee as being transformational, not only for health information technology, but for healthcare in general and the health of this nation and that this will be a very important time frame that all of you have participated in.
I want to give special thanks to Jim and to Marjorie and to Mary Jo, also to Bill Braithwaite and Karen Trudel, who were the staff who I worked with most directly as I chaired various workgroups and subcommittees, but also to all of the staff of the Department.
There is a bright future ahead of you. You've got a lot of hard work, but you really should know that working on this committee will make a difference, not just to you and not just to the industry, but to every single person in this country.
So thank you for the opportunity of leading you and saying a few words. (Applause).
DR. COHN: John - and I guess I should - we talked, obviously, last night and did a lot of celebrating, but I think, as you know, it has been a real joy and pleasure to work with you these many number of years. For all of you who don't know, he and I came on to the committee at the same time back in 1996, and it has really been a joy to work with you.
Certainly, I think the committee, and really the nation, have really benefited from your leadership on the committee. So thank you.
Now, with that, we'll move back to the agenda.
Agenda Item: NCHS Update and Report From Board of Scientific Counselors
DR. COHN: I think our first agenda item is an update from the NCHS and the Board of Scientific Counselors. Ed, I think you're - Sondik, you're taking the lead.
DR. SONDIK: Right. I can bring the picture back.
This computer was actually created back in 1950. Think it is so inappropriate that this committee should have the support -
SPEAKER: Speak into the microphone.
DR. SONDIK: Oh, yes, well, what I am about to say was totally unimportant, a gratuitous remark about how the committee should be supported by the latest in technology, rather than something that is two decades - or two generations maybe - old. In any case, enough of that.
It is a pleasure to be here and to update you on the National Center for Health Statistics, what has been happening, some of the progress, some of the challenges, and it has actually been a very eventful year for us -
DR. COHN: Ed, you're still going to need to get closer to the microphone.
DR. SONDIK: Oh. I hear perfectly well. How is that? Is that better?
DR. COHN: There we go. Thank you.
DR. SONDIK: Okay. Been a very eventful year for us in many ways, both programmatically and administratively as well, and I'll go into that a little bit.
Mr. Chairman, given that the agenda has moved a little bit, would you like me to compress - Okay. Always difficult for me, but I will do that. (Laughter).
All right. These are some of the things that I want to talk about, and I will - I'll give you a set of the handouts from this later.
Let me talk first about this complex diagram, which I am not sure you have seen before, but this is a view of - at least one view of what the new reorganized CDC looks like. I could certainly talk an hour about all of this, so I'll try to just condense it.
CDC has gone through a major transformation to focus, as it says here on the top of the slide, on customers, and not only the public-health channels, but other channels as well - business, education, healthcare delivery, the federal agencies, really whatever it takes to really make a difference in health.
In order to do this, it has combined the various centers - not combined them, but reorganized by putting them in coordinating centers, and you can't read all the small print here, but there are several coordinating centers along this line here, including a coordinating center for infectious diseases, one for health promotion, one for the environment, and injury, occupation, and then there is this one that is in gold right in the middle, very prominent, and you can see that to the right of that is - and there is the National Center for Health Statistics. It is this center that is meant to provide a much more effective link to the customer, to the public, to professionals than CDC has done in the past, and two new centers are being created as part of this, one, the National Center for Public Health Informatics and the National Center for Health Marketing.
The National Center for Health Marketing does exist. The one for public health informatics is about to exist, or, in the parlance of today, is about to be stood up. I always thought that had to do with a date, but I was - I guess I'm wrong or dated, in any case, and we are actively searching - in fact, the searches have closed - for directors for those two new centers.
One of the major reasons for this change is that in the old CDC organization, there was something approaching 40 people who were direct reports to the director. This reduces that, but, at the same time, everyone who was a center director still has direct access to the director.
One thing that doesn't show on this that I think is important is that these coordinating centers are actually located within the Office of the Director. Whereas, the centers that are underneath them are not in the Office of the Director. This is important for a variety of reasons, but, mainly, it is important - I think the most important reason is that it empowers the centers. It continues to emphasize their sort of single-minded importance in the areas in which they are expert.
NCHS has a very prominent role in this, and, in that role, it continues to maintain its position as one of the federally-designated statistical units, like Census, the Bureau of Labor Statistics and so forth.
This is extremely important for the overall plan here, because one of the elements that doesn't show in this diagram is that there will be a set of goals that the program will be aimed to achieve, and NCHS will play a critical role in monitoring progress toward those goals.
So it is important that we be a - it be in a position of independence, the kind of independence that the federal statistical agencies have.
There's some new - also some changes administratively. There's a new business services support budget line and a leadership and management support line, and decision-making structures have changed somewhat, but we really don't have time to go into that today, but I would be happy to do that in a later meeting.
As it turns out that - for a variety of reasons, a number of the CIO director positions have opened, mainly because of retirements, and there hasn't been a recruiting for these nine CIO director positions, not only the Marketing and Informatics, and for the new coordinating center that we are located in called the Coordinating Center for Health Information and Service.
I have been serving part time as one of the two acting directors for that coordinating center. This has been of tremendous benefit to me to understand the ins and outs of Hartsfield) Airport. (Laughter). Has to be a monument to design. .
But, actually, it has been terrific in understanding - even though I have been at NCHS for almost nine years - in understanding better the parent organization, how it operates, the culture of CDC, and many of the challenges, and it has really been very positive.
I cochaired a group working on goals a year ago that came up with a first draft set of goals, and really met more people at CDC than I had met in all the previous years - distance is difficult - and I think link those goals to healthy people, which I feel strongly about as a prevention agenda - at least an agenda that people can draw from.
So I have been spending about half my time there, and people in the center say they just don't notice any difference. Marjorie can speak to that. (Laughter).
MS. GREENBERG: Where have you been going? (Laughter). We miss you.
DR. SONDIK: Thank you, Marjorie, for that. Let's talk about some of the major changes. A very significant change for us this year has been in budget. This is what our budget funding has looked like over the last several years. While it has gone up, certainly, it has by no means kept pace with what it takes to run the National Center for Health Statistics, and I have talked to this group many times in the past about what we have been cutting back. Really significant cutbacks. We have cut weeks off the National Health Interview Survey. We have made changes in NHANES, not in the sample size, but other rather crucial changes, really, that are less obvious, but still are not the kind of thing we would like to do to maintain quality. We have paid the vital statistics program, instead of paying on a 12-month basis, we have done something on the order of an 11-month or a 10-month basis each time bringing the fiscal year back a little bit. There's only so far that VISA allows you to do that, I understand, and we really - we were at a point, until this year, where, if we did not receive any increase, we were going to have to make a much more serious set of cuts.
Now, we did get an increase this year, and it amounted to something over $20 million, really unprecedented for us, but in order to show that to you, I have to explain just a little bit, that in the new structure for CDC, there is a new budget structure as well, and the program is being separated from what amounts to the indirect costs - what I would call the indirect costs of running the program, and so, in the figure for 2004, instead of being where you see it here up around $120 million, actually falls back over here to something like $80 million. This is more of a budget adjustment than anything else. This was money that was not going directly to program, but was going to support program.
What happened in 2005 was we received this budget increase up to - now, the figure we are quoting is $109 million as our budget, as opposed to the $40 million more than that which is under the old calculation, if you will, and the budget for 2006 proposed by the President is to keep us constant. I'll say a word about that in a second.
I mentioned many of the things on this slide, but the key points are that this increase of $19 million net prevents more erosion of what we have been doing. It allows us to improve our position, but I must say not to the extent that I would like, but we will do - clearly, we will do the best that we can with this $19 million, but it is a significant - I can't emphasize how significant a change it is to the center in that we will be able to really keep ourselves afloat.
I thought I had a slide in here on 2006. Maybe it moved a little further, but 2006 keeps us at a level, but to put that in perspective, CDC's budget for 2006 actually falls around, I think it is seven percent or so. So we are doing well with that.
Now, this increase is due to many things, and many people, but it was very gratifying that the Department was behind us. The Department - I think, through the work of the Data Council, through the work of this committee, the Department said this needs to be a priority for HHS, and we were in the - if you will, the bottom line, a zero level in the budget, and that - for an increase and that just hasn't happened before. So we are very grateful for this.
What this will allow us to do is - I'll run through this quickly - is to continue in our work to modernize the vital statistics system. We have been working on reengineering this. There's more work that needs to be done, and more work that needs to be done in terms of a rapid release for data for decision making.
The Health Interview Survey, this is going to stop us from - what is the term? - eating away at it, and we are going to be able to restore the sample size, and that, I think, is just very positive. The Health Interview Survey is very much at the core of what the Department does in terms of data collection.
For those of you who don't know, it is a very large survey, 40,000 households, 100,000 people. Many supplements are added to it. It is the model for the California Health Interview Survey, and nothing would give me more pleasure than to see the California Health Interview Survey replicated around the country, so we have a national source as well as local sources and these things melded together using the same rigor across the board.
We don't support the California Health Interview Survey, by the way, except in terms of sharing with them procedures and standards and so forth.
In NHANES, this will allow us to continue to have our full field operations and provide more opportunity for us to work with our collaborators. We are very important to NHANES to develop new components for the survey in the future.
It is the same kind of thing for the Health Care Survey. The Health Care Survey, probably more than any other component of NCHS, has suffered over the last several years. It was the easiest to modify, because the surveys are relatively small, and we can simply take them out of the field. I don't consider that the most efficient thing to do, but when the money isn't there, you've got to make choices.
This will allow us to, I think, revitalize this, and a major planning meeting was recently held by the new director, Jane Sisk(?), and there was great - really a very positive response to this.
Here is the 2006 budget that I - and I really talked about this, that our funding would remain level.
We have had a lot of staff changes this year. One, there was a major emphasis on buyouts, and, actually, we lost a number of staff. I think 30 something, I think it was in NCHS alone, ten times that many, I think, in CDC. Jack Anderson retired, but not because of that, and Jack was - and still is - somebody with tremendous knowledge of both the technical side of NCHS as well as the administrative side, and was, I must say, unflappable and just a terrific guy, and we will miss him.
The deputy-director position, after some question in CDC as to whether or not there would be such deputy positions, will be filled, which I am pleased to say, but, at this point, I can't say by whom.
We are in the very late stages of recruiting for the associate director for analysis and epidemiology. This is the group that does many, many things, but probably is best known as the group that produces the volume, Health U.S., but does much, much more than that. I mentioned Jane Sisk joined us in the middle of last year.
I have time for a little bit of this, I think. I certainly want to leave time, number one, to talk about the BSC and, secondly, to allow questions.
The reengineering of the vital statistics system is really coming along, and we still don't have the funds to give the states what they need to revitalize their programs, but there has been a lot of model development, and there's a prototype system that is being developed. The birth side is in pretty good shape. It is the mortality side of the ledger that is really - suffers. Someone once said to me - perhaps in this meeting, I'm not sure - said it is really horse and buggy, and the person said, you can say that literally, because there are parts of Pennsylvania where, in fact, it is horse and buggy, and I always refer back to that statement, but it is very - many of you know that the system for reporting deaths is really kind of archaic, and, fundamentally, it is an administrative system. Same thing for births, and yet it really is the foundation for what we know about health status in the country.
I have had difficulty with this for my entire career, and we have not been able to make major changes in this, but I hope - perhaps when HIPAA gets less on the agenda, this is something that we can bring to this committee, because it really is the foundation for what we know about health in the U.S., and we can do a better job. It would certainly fit with the NHII, and it fits with the vision for health statistics for the 21st Century.
In the modeling that has been going on, this is an example of one of these. This is called the back-office-use-cases diagram, and these have been laid out for the entire process for vital registration. So these, as it says on the slide, have been finalized, and they are now on the internet for review and comment by the vital statistics programs.
There was prototype development. It is underway, but it is on hold at this point waiting to see if we have the funding to move it forward.
An interesting, very interesting update that you may be familiar with is that in the recently-passed Intelligence Reform Act, it authorized grant programs to strengthen state registration and certification for identity purposes. This, without a doubt, would have a very positive effect. With money, this would have a very positive effect on the vital statistics system. (Laughter). I have a meeting this afternoon and we are going to talk about it without money - (laughter) - but preparing for that moment when, in fact, it is there.
It is really fascinating. This involves at least six different federal agencies, as well as, of course, every state, and this could really be the shot in the arm that we need.
Lots of news this year. Probably one that got most attention was that the infant-mortality rate rose. Now, it looks as if it is actually going to drop back from that rise, but we won't know until we actually see the final data.
Another program underneath the vital-statistics program, which is led by Charlie Rothwell - the overall vital-statistics program - is the National Survey on Family Growth, and its 2000 data was recently released and had a great deal of attention, particularly on the side of contraception use and sexual activity - teen sexual activity, especially. We changed this survey from an episodic, if you will, periodic survey to one in which we plan to do this on a continuous basis. I think it is very important. It is kind of a - it is related to the vital statistics, but it is also related to everything else that we do, but it happens to be under vital statistics and is doing very well under vital statistics.
The great majority of this survey, by the way, is paid for by others and it does not come directly out of NCHS funds.
This is an example of one of the articles here. Most U.S. teens are delaying having sex. This was in the Washington Post. Fewer women using birth control. Again, this happened to be in the Post, but was widely covered.
In NHANES, some of the developments over the past year were - and I'll start at the bottom here - We have added new components to the survey developed over the last year that are now in the field right now. If you are going to be in Atlanta, by the way, over the next month, NHANES, is set up at Turner Stadium, and if you are interested in actually touring one of the NHANES sites, while it is there, I would be happy to arrange that. If you are interested in general, I would be happy to work with you on where it will be when, but we have three of these centers - bubble(?) exam centers touring the country on a very rigorous statistical design, and the information that comes out of that I don't think is matched by any other - certainly any other program in the world, given the number of people that have come to NCHS this year for help on designing their own work, including Canada and other countries.
So I mentioned - I didn't mention, but digital images of the retina are going to be collected, as well as more information on allergies.
We also - I should say the New York City Department of Health and Hygiene under Tom Freedon(?) completed its own version of NHANES, called Community NHANES, or they called it NYC NHANES this past year. We worked very closely with them, but it was their money. Although, we did do some software development that will be very useful elsewhere, people who want to do a smaller-scale version of NHANES, and the strategy behind this is to provide a solid clinical set of measurements - as opposed to self-reported set of measurements - a solid clinical set of measurements that uses the baseline for several years and then redo the survey, and with my proselytizing hat on, I would love to see more people involved, more locales involved in doing this, not only on a geographic basis, but also on a racial/ethnic basis or some other demographic basis.
We were talking last night, actually, about Appalachia, for example. There's been lots of talk about the Southern border. Okay? There is also the Mississippi Delta area and just up that - what is the name for that corridor? Up the Mississippi?
SPEAKER: The Bible -
DR. SONDIK: No. No, it's the area with a great deal of environmental problems. I'm blanking on what the term is for that, but there has been a good deal of interest in doing NHANES there as well.
HIS continues to be, of course, very, very productive. One of the things that that program is very proud of is the early release estimates that put data out - that release data that was collected in January through June in December, and that really is unprecedented, and they have been doing this now actually for the last - oh - year-and-a-half or so, I guess.
We also conducted a survey with Canada, and really on more of a research basis, to see if we could conduct exactly the same survey in both countries, minimizing any kind of bias and see the feasibility of doing surveys across countries. There's lots of cross countries comparisons in terms of health status, but a great deal of it is suspect because of the way questions are asked, and, actually, WHO has done some very good work under Chris Murray when he was there in looking at exactly that point, and some of the differences, particularly across Europe, are really startling, about how you get such different answers to the same question, and you know there can't be such a different health status.
Anyway, this was the survey. It was published this year, and one of the articles said that there was no winner in the health showdown, but I must have been politically correct here and took out a slide that said something like the women - this is from a Canadian paper. Women in U.S. are fatter, it said. (Laughter). That is what they said. It was a minor, but statistically significant difference, it turns out. (Laughter).
The positive thing is we found out some very interesting things. One is it was much easier to conduct the survey in Canada than it was in the U.S. It was very difficult in the U.S. We used the Canadian call center to do it, managed by both of us simultaneously, cooperative way, but it was very interesting that people here are much - as we know, are much more reticent to answer interviewers, and in Canada, they had a much higher response rate. We had to work much harder in the U.S. to get that response rate up.
Advances in HCS, the Healthcare Survey, included - well, first of all, a report on electronic medical records that is going to be released, I think, early next week. Okay? And showing that it hasn't had the penetration that one might hope, and we did a nursing assistance survey under the cooperative support of ASPE, attached to another one of our surveys, and we have redesigned our nursing-home survey, which, I think, is really a positive step forward.
I am going to do this slide, and then I'll turn this over to my colleague. Okay?
One is this is actually a hard slide in that it is hard to summarize all of the data and the releases, but I'll give it a real shot with this.
In vital statistics, the data - the final data from 2002 has been released. The preliminary data from 2003 has been released. In Health Interview Survey, the early release figures for 2004 are out. That is the ER figure, and it says Publications, because we don't have the detailed data sets on that, but the data is - summarized data is on the web, and data files for 2003 have been released. NHANES, all of the data from 2003 to 2004 are going to be released in just a couple of months, and some of it has already come out.
We don't release it all at once because we feel that - our feeling is that, first of all, we can't process it all at once, and, secondly, we feel that, as a federal statistical agency, when the data is ready for release it should be released, and so we do it as promptly as we can, and many of the components of healthcare from 2003 have been released, and I just mentioned the report on electronic medical records that will be released shortly.
One other thing, this is an area that Marjorie Greenberg is very heavily involved in, but is not - her group is not the only group that addresses issues related to classifications, and it struck me, actually, in communicating with Marjorie about this that this might be something that, number one, I think clearly is important to our Board of Scientific Counselors, but also might be useful to discuss here as well as to the range of activities in NCHS, but not only in NCHS, but across the department in addressing the classifications which are so crucial, and we are involved with everything from ICD 9, CM to ICF and to issues related to disability.
There is more on the slides that we'll be handing out, but, with that, let me turn it over to Aldona.
DR. ROBBINS: Okay. Thanks, Ed.
Let me just give you a very quick update on what the Board of Scientific Counselors is about.
Our last meeting was January 27-28, and, over the last year, I have been coming here and telling you we are - as a baby organization, we are in an organizing mode. Well, we finally have got our act together and actually have started to do some work.
We are going to be assisting NCHS in this internal review of its programs that I think I spoke about at the last meeting, and this is something that - within CDC, all the programs are going to be subjected to some sort of an internal peer review, and the first program that we have decided to look at that the Board of Scientific Counselors has is vital statistics, which Ed has said a little bit about, and which presents some special challenges.
As Ed mentioned, underway is a fundamental reengineering of how vital statistics are produced in the United States. Besides NCHS, they are, of course, partners with the state and the Social Security Administration that is involved in implementing the 2003 revised birth and death certificates and moving to electronic record keeping. These revised certificates are going to be - are at least designed to collect a great deal more information.
Of course, the big problem that vital statistics and other programs in NCHS face is money. There is simply not enough money around right now to help the states reengineer their systems.
In the legal area, there are some law changes that are going to be needed to facilitate automation. We have to remember that vital statistics is essentially built on the vital registrar system. It is run by the states, and that system has its own legal requirements and there can be conflicts between that and trying to move to automation.
There are also issues likely to arise on the security side because of the intelligence reform legislation. This is going to require federal regulations of parts of vital registration for the very first time in history.
And this - you know, what I have tried to bring back to the board is the work, of course, that this committee is doing, and one of the areas of emphasis is, of course, this move to electronic record keeping, and this seems to me that the vital statistics fits in very nicely there, because if we ultimately do get one - you know - record that each of us is followed for our lifetime, that essentially the first field in that record will be our birth certificate and the last will be the death certificate. So there's an overlap there.
What we are going to be doing - just quickly - is using a set of criteria - again, starting with vital statistics - but we'll be following the same thing with the other NCHS programs in our review, and, basically, we are going to be looking at the mission, goals and objectives of the program, and trying to see exactly what is going on within each program, including those activities that are mandated by legislation. We are going to be taking a look at resources, particularly budget and staffing, looking at how those are being allocated within the various components, in this case of vital statistics, and included in that will be research.
We are going to take a look at measures of productivity, in terms of the data files that are put out, publications by the staff and other service activities.
We want to take a look at data usage, identify who is using the data, get feedback from them, to the extent there are potential users out there that aren't using it, why is that, take a look at the most cited publications, and, also, one of these problems that apparently arises is that NCHS is the source of so much data, and, yet, when it appears out in the public, it is never linked to NCHS. Someone else - an intermediary is kind of - becomes identified with the data, and that is something we would like to look at.
We also want to take a look at the program strengths and weaknesses and take a look at what problems can be fixed without requiring more staff or money, and then, of course, which ones can only be fixed with more staff or money.
And then, also, finally, to take a look at how relevant - the relevance of the program to any current presidential or congressional priorities, and, of course, in the case of vital statistics, this would be, among other things, electronic medical records and the Intelligence Reform Act.
And so I will stop there and will entertain questions.
DR. COHN: Okay. Well, thank you both very much for a very interesting review.
I do want to apologize, obviously, we are a little time compressed, though my sense still is is that there's probably a couple of issues we'll want to follow up in either June or September about.
You have time for one or two questions.
Gene.
DR. STEUERLE: Ed or Aldona, I'll bring up an issue that is quite familiar to those of us who have advised - I am sure you are quite intensely focused on this as well at times - but have advised the statistical community within the federal agencies, particularly in the U.S., because of its system of very scattered pockets of support, as opposed to, say, like the Canadian system which is more united, and one of the really big issues is that there is a tremendous amount of information that is already gathered. Essentially, it is gathered in the form of administrative data that are already filed, whether it is tax returns that are filed or - one of the issues that faces the population subcommittee has to do with sort of how health benefits are distributed across socioeconomic classes, how will they do merges of Social Security data, which give lifetime earnings, with Medicare data is a very easy way, if you can do it, and you can get people in to do it, to solve that problem.
IRS has data on - by professions, you know, salaries and how they change over time. I mean, we could go on and on in terms of what might be available through Medicaid or other data.
There is always this dilemma of how do we get access to this administrative data, because, often, one agency says they can't provide the data to another one. Another one, they can accept data, but they can't provide it, and so the merges don't take place, the files don't get matched, the survey data doesn't get matched up with the administrative data, which could really inform it.
I am just curious the extent to which that - you know - your group deals with this issue or whether it is trying to confront it, the extent to which it is facing up to what, in some cases, is a legal challenge as much as, in many cases, more than it is a - you know, lawyers - I'm just curious whether you might just comment on this whole question about how we can make better use of administrative data, what steps we have to make to go forward.
DR. SONDIK: Well, certainly, I think, there are great benefits from doing that. There are also potential costs from doing it. The costs being that it opens up information and perhaps the things will not be as tight as they should be.
You know, for example, one of the interesting things is when we - the Census Bureau conducts the Health Interview Survey for us, as a contractor, in essence. In doing that, they do not create - we do not use the Census itself, the detailed information on the Census, to draw the sample. They can't allow us to do that under their rules and regulations. Title 13, under which they operate, forbids them from sharing that information, even with another federal statistical agency. So there is a duplication of effort here, which, in large part, is really wasted, and we have actually been working with them on some ways around that, but it will not be to violate Title 13. We actually have some thoughts on something else that we can do that we think will be very efficient for them and for us, for that matter.
But there are times when we can put the data together. We have a research data center, which is a protected environment, and, in that, we allow researchers to look at information that would ordinarily be considered as partially identified, if you will. Information that - it is more detail than we have out on the public-use files and so forth. This allows us to do much more with the data - have researchers do much more with the data than they could otherwise.
We have linked with other files - we have done this with CMS - and it is conceivable that we can do this, but it is very important that when we do it - when we work on it - that we do have the lawyers in the room, because there is the twin sides to this, and there is always the question of, if you will, the slippery slope. I mean, we have these issues come up just in the data that we collect in which people feel they would like, for example, a sample of DNA from NHANES, and they would like to keep that sample and use it in perpetuity. Well, that would violate what we consider to be our stewardship responsibilities for that data and the pledge that we made as part of the disclosure agreement with the respondents. So there is always an issue here.
There is great - there is certainly great potential from this. I think it is really going to rise to the fore with electronic medical records, and I am sure - David Brailer was here yesterday. This must have been part of the conversation, I would think. Well, maybe not yesterday, but it certainly will be in the future. It is one of the major issues. There is great promise here, but, also, there is concern about maintaining the confidentiality of these records.
So the bottom line is we would like to do as much as we can. We are always very clear that we have the lawyers with us, so that what we are doing meets the letter of the law, but, at the same time, what we are trying to do is do as much with them as we can.
I sometimes look at Canada with envy at the system that they have, where things are more merged together, but even in Canada I think there are issues in sharing records across one part of stat Canada with another part.
DR. COHN: I think we have time for one more - Steve, comment, and then I'll let - Okay. Two more elaborations, and -
DR. STEINDEL: Actually, this is a bit off the present topic, but I just wanted to make a comment, since both of you stressed on vital-record statistics.
I am sure most of the people in the room are aware that a number of years ago an award for health IT excellence, the Nicholas Davies Award, was instituted, and it was given to institutional systems. A few years ago, HIMSS took over the award and branched out to ambulatory-care systems, and, this year, they branched out to public health information systems, and the first set of awards were given this year, and one of the awardees was the South Dakota Vital Records System.
DR. COHN: Jim, did you have an elaboration?
MR. SCANLON: Just quickly, to expand on the answer to Gene's question. There is actually a fair amount of statistical matching and use of administrative data, and Medicare has had, for decades, a very enlightened policy of allowing its records to be used for research purposes under the right privacy and confidentiality provisions, and there's a fair amount of matching between the survey work and some research studies with administrative data, and subject to the - in Medicare's case, they are actually a covered entity under HIPAA. So you have to have a - go through the Privacy Board.
There is less so with IRS, for various reasons. There is less intersector kind of linking, but there is actually a fair amount in the research arena into this fiscal arena, and maybe we could set up some future briefings for the Subcommittee on Populations about where we are.
There is actually fairly extensive use, and there is fairly enlightened data-access policy for research among some of our administrative agencies.
DR. SONDIK: Well, I think the work with CMS is pretty well known, you know. I mean, we have been doing this for years, and the NIH - NIH, for example, we matched the SEAR(?) program, cancer, with Medicare.
MR. SCANLON: Not unusual at all.
DR. SONDIK: Yes, and so - but that is not the challenge, I don't think. That takes time to do. The challenge is in the area of where the laws are there that strictly forbid it, and, you know, then I think you have to balance the purpose with the laws, and perhaps there are circumstances when you interpret the laws where something can be done in a particularly protected way, but I'll tell you the interesting - I mean, with the Census, it is very interesting and frustrating that we cannot crack that, and, in a way, I think it is appropriate that we can't do that.
DR. COHN: Yes. You know, I want to finish up this conversation. I do apologize. On the other hand, we actually have spent a fair amount of time, but what I wanted to do, Ed, is to invite you back, and, depending on your schedule, either in June or September, to have a slightly longer conversation or maybe a slightly different conversation with NCHS. I think the issue of hearing about the vital statistics redesign - You know, I think that we have talked, now, a number of times about this linkage issue. I can remember recently we had Census come and talk. Well, actually, maybe it was HHS talking about Census. I'm not sure who came up from that, but I think we maybe need a broader view and may just not be a population subcommittee issue, because - and, once again, I am not a researcher, but I am continually sort of fascinated, maybe a little frustrated, by the amount of redundant data collection, as well as the push for more and more redundant data collection, and so I think maybe a briefing to sort of understand the regulations and rules and limitations around all of this, as well as maybe the opportunities, because it is probably, like Gene, hard to believe that there aren't some more opportunities there, and I think it would be a very important conversation to have with NCHS.
DR. SONDIK: Yes, I suggest that you invite Cathy Wallman(?) of OMB to be part of that discussion. I think it would help.
The last slide I put on the screen is of something that has recently been added to the MMWR, which is something called Quick Stats from the National Center for Health Statistics, and we are very pleased about this, because this means that every week there is going to be something from the files of NCHS that is presented, and it is presented to a community, many of whom really don't use the data to any great degree, even though they depend on it, and that is the public health community, and I am very pleased that our colleagues in Atlanta wanted to do this, and we are pleased to cooperate with them.
DR. COHN: Well, congratulations.
And I guess before we finish, I was also going to comment that your comment about having some information about classifications - then, of course, over to Marjorie - is, I think, also a good one for either the June or September time frame.
So, I mean, thank you both very much, and very interesting work and conversation.
Paul, I think we are moving over to the next topic. Did you have a comment?
DR. TANG: Well, maybe just a quick ask is it conceivable or would it be destructive to list - kinds of things when you do do these surveys and let them be shared. That would make it both - you know - truth in lending, from a disclosure point of view, as well as give us a - is that something that is likely?
DR. COHN: Is your question about revising the -
DR. TANG: Right.
DR. COHN: Well, I think that is part of the - probably part of the conversation as we talk about linkages. So we'll include that in -
DR. SONDIK: I didn't get the first part, in terms of linking -
DR. TANG: You had your surveys and people were able to opt in to let it being used for other things, you know, you enumerate what the other uses are.
DR. SONDIK: Oh, I see.
DR. TANG: Would that be -
DR. SONDIK: Informed consent?
DR. TANG: Yes, would that hurt your cause, do you think?
DR. SONDIK: No, it certainly wouldn't. I mean, as long we stay with the informed consent. I mean, our major concern - our drive is to get all the information out. Our concern is that we don't want to violate the confidentiality. So it is one of the reasons why we developed the research data center to do that, and that can be accessed directly or indirectly, using the internet, but we can certainly make more of a point, I think, and at least think about what this data potentially could be linked with.
The NSFG is linked with what is called a resource data file, which - I think it is really terrific. It really gives - it gives information on the locale in which each of the respondents lives, so that what you know is the geographic - the demographic characteristics of that, including what is available - what healthcare is available in there, you know, the usual things in terms of education levels and income and so forth, but more than that, in terms of the facilities that people could take advantage of.
So the way it is done it doesn't violate the confidentiality of the individual, but it adds a great deal to the data set, extrapolating the individual into their region, if you will, not giving the specifics, but, still, that is very, very useful.
Agenda Item: Federal Initiatives in Geocoding
DR. COHN: Okay. Well, Ed, I think you have done a great segue and introduction to our next topic, which is federal initiatives in geocoding, which is very appropriate.
Now, I believe Dan Melnick, you are on first, and, Andrew Dent.
Obviously, thank you both very much for coming and joining us.
Are you going to move over towards the computer? Okay.
MR. SCANLON: While Dan is setting up, I'll just give a brief intro. Under the auspices of the Data Council, the Department initiated this project, I guess almost two years ago, Dan, as part of an initiative to make - to increase the user-friendly access to the vast statistical and data holdings that we have and other federal agencies do have; and, as we moved along the initiative, a government-wide OMB initiative also already came into form dealing with standardizing the way we code and identify geospacial data, probably started initially to end with fixed facilities - GPS coordinates and that sort of thing - but it clearly involves other statistical kinds of information as well, and Dan has actually done this job with all of our agencies and the Data Council. In fact, I think, HHS is probably in the lead in this initiative in terms of organizing this information. So Dan has been working with us as a consultant.
DR. MELNICK: Thank you very much. I also want to mention Jack Moshman, who is sitting in the room, who is associated with this project.
I am pleased to be here with you today to tell you about some new resources that we have brought on line and are about to expand and bring on line for you. They are targeted to help people find the data, and I am going to talk a little bit about how we did that and what the implications of that are.
First of all, to review things that you already know - so I am going to go through this very, very quickly - there is a very rich body of information reported about health and vital statistics, as you know. I have just listed a few of them here. Needless to say, beyond the federal government, there is also state and local government resources. There are noon-government resources. There is a vast scholarly literature, and the Data Council, ASPE and the agencies agreed that it was important to improve the ways in which people find this information, so they can use it better.
So the goal of this activity that I talk about is helping the public find the information, promoting increased and more appropriate access, of course, doing it in an atmosphere that respects the privacy and data integrity, and, most importantly, not inventing anything that already exists - in other words, using existing resources to the extent that they are possible.
I think I just skipped a slide.
DR. COHN: We have copies of it.
DR. MELNICK: What? You've got copies of it. I think I missed slide 6.
Here we go. This just lists a whole set of prior efforts at this task, some of them at a very high level of generality, from our point of view - that is, from the point of view of health statistics like FEDSTATS, others that attempted to catalogue the Department's contributions in this area, like the Directory of Health and Human Services data resources. There are also a wealth of private library and other kinds of uses. There is even one commercial service called the Statistical Universe that offers this type of finding, and there are a wealth of individual agency efforts, and our job was to try to produce something for the Department, for the Data Council that took maximum advantage, where possible, of these existing resources and made it possible for people to find the material more easily. I am going to talk about how we did that in a minute.
But, first, let me say that, in the middle of that, while this effort was ongoing, the Department faced a new requirement from the Federal Geographic Data Committee. There is an OMB Circular that requires the Department to report metadata about its statistical resources to this committee.
The committee was formed a number of decades ago. The operation started a long time ago, but, mainly, originally, it was focused on coordinating the way in which geography is recorded. It is mainly cartographic, and, of course, the Department does no cardiographic work that we could find, at least no large amount of cardiographic work, and I keep getting pulled back.
And, however, what happened was that recently, in the last year or two, the Federal Geographic Data Committee has begun to branch out, and they now want reports about geographically-referenced material. Geographically-referenced material is material that not only emphasizes the location, but also the characteristics of natural, constructed or governmental features and boundaries on the earth. That is their definition of what geospacial data is, and when you get into that, it turns out that by one definition of this, if there's a table that reports state or county data about health, that turns out to be geospacial data, and they would like reports about it.
Well, as a matter of fact, because of the other work that we were doing for ASPE, we have a solution that can do this without taking a very large proportion of the budget of the Department. In fact, we were able to do it for a very small amount.
So the implication of this is that they want information about geographically-referenced statistical summaries and data sets with geographic tags.
Of course, I have already said this, DHHS does not map geography, but many of the reports - in fact, probably a very large proportion of the data systems - do include information about geographic areas - states, counties and other areas.
The idea is that the FGDC has formed a clearinghouse. The clearinghouse includes metadata about these resources. It doesn't actually include the resources. It doesn't actually include any data. It is basically a directory where geographers go to be taken to other information, and DHHS is required by the OMB - to provide this metadata.
You know, I must say that there is also something called the Geospacial one Stop. It is in the material we handed out, and it is designed for a much wider audience that includes people who aren't primarily geographers. If you go to the FGDC site, what you are going to find is finding software that, for example, will pull up resources by longitude and latitude, which is the way geographers deal with these resources. The Geospacial one Stop enables you to do it in a much more direct sort of way.
I recently learned that everything we provide to the FGDC Clearinghouse is also going to be reflected in the Geospacial one Stop, so that is a considerable advantage.
So our specifications were - that is, the FGDC part of this - was to compile metadata for these resources to comply with the rather copious FGDC-specified standards. There's actually a several-hundred-page specification for how to do it, and this involves linking methodological information, the data itself, data-access information and other kinds of metadata.
Of course, we also wanted to do it in a way that didn't task the DHHS agencies, because they have their own rather important agenda, and we want to take maximum advantage of their expertise.
What we did was to take advantage of something called the Gateway to Data and Statistics. This is a website that we have created for ASPE. It is driven by an on-line catalogue. Currently, the on-line catalogue covers approaching 7,00 web resources from federal, state and local governments, including a large part of the Department's offering. It is not finished yet. That is to say, we think it will grow well beyond 7,000, maybe to 10,000 or 12,000 or 14,000, in order to have completion.
By the way, just to give you an idea about what it took to do this, we actually reviewed about 10,000 resources. We selected about 7,000 of them, and then out that approximate 7,000, we have selected about 10 percent of them, or about 700, which are candidates for inclusion in the FGDC Clearinghouse.
We are at the point now where we have compiled the metadata and the information about these resources, and we are sending this information out to agencies to give them an opportunity to see it before we actually send it to the clearinghouse where the public is going to be able to see it.
One of the key features of this online catalogue, unlike a facility like Google, where you could go in and search for something - which is also driven by a database - the two features - one is we don't actually catalogue all of the words in every site, but, rather, we tag them so that you can go in and on this site you could pull up all those that relate to a particular study or collection, like the NHIS. You can do it by organization or agency. You can do it by type, and here what we are talking about is what your experience is likely to be when you reach that website.
For example, if there is a feature on the website that lets you generate your own tables, there is a way of retrieving it that way. You can retrieve by geography.
And the last two points on this are things we are currently developing; that is, ways of retrieving by geography and possibly also including the staff contacts.
We hope that in the future this facility would enable people who are looking for data not only to find the data in the form of a report or a table or a data set, but also to find information about the methodology, the limitations, the access restrictions and other relevant information that comes out of this metadata.
So what we have done is, as we have approached the FGDC issue, we also took advantage of what their requirements were to enrich the Gateway.
In your material, there are web links for the Gateway and for the FGDC. I would invite you to look at the Gateway and send us comments - there is an email address given there - because we are in the process of upgrading and revising and enhancing the gateway and your comments would be particularly helpful at this time.
So the Gateway provides - and here are the websites. I am not going to read that to you, obviously.
So the approach that we have used is that one catalogue is providing data for these three resources. We have conserved scare resources. This is basically our ad. We have also protected privacy and data integrity.
First of all, we have done this because we - all we are providing is a catalogue. We don't actually have control over the real data itself. We are just sending people to the agency, and, in the case of the Gateway, even state-government resources, where they can find the information. So the originators of the information still have complete control over it. We haven't actually data-banked it or anything like that.
The purpose is to get the user to the right website where they can find this information and where they can also find metadata.
Well, the time is very short, so I am going to quickly go through some of this.
The next slide, which you have a copy of, provides the rationale for the Gateway. It involves virtually integrating DHHS statistical resources, covering the broad panoply of agencies, without actually having to obtain that data, and put it together in one computer or one place, and it is driven by an SQL database that we designed. It covers reports, tables, data sets. It links - and we have already done some of this.
Okay. The important thing about the Gateway, though, is that it does cover federal, state and local government resources related to Health and Human Services, and I have gone through some of that, but what I didn't do was - Excuse me. I keep skipping. Okay. We have already discussed that one and that one.
Finally, I am here to ask you, among other things, to encourage people you know, and for you yourself to use the resources that are noted here. We would like to get the word out that this new resource exists, and we would appreciate your using it, your sending us feedback and your recommending it to others.
We are particularly interested in your suggestions for ways in which it can be improved, and here are the contacts.
Okay. I did that in just a few minutes, to get you back on time. I would be very happy to answer any questions. I would be also happy if there are people who have comments or suggestions that we don't have time for here to honor and respond to emails that you send me, and I would strongly invite you to go and look at the Gateway and send us your reactions to it.
DR. COHN: Okay. Well, Dan, thank you for helping us move through, but it sounds to me like we should look at - the key message is here look at the website and email your comments.
DR. MELNICK: That is the key message, yes.
DR. COHN: Okay. Great. Well, thank you, and, obviously, we'll be talking about it more, but I want to let Andrew give his presentation, and then we'll just talk about it.
MR. DENT: Hi. My name is Andrew Dent.
I am not going to use the computer here. I don't think my - Let's see here. I thought they said it was going to be loaded. You all have handouts, is that correct?
DR. COHN: We all have the handout.
DR. MELNICK: While we are waiting, if anybody has a question they want to ask, I would be happy to respond.
MR. SCANLON: And you might just mention, the HHS Statistics Gateway, Stat Net, I think we include not just HHS, but other federal-agency statistics -
DR. MELNICK: That is right.
MR. SCANLON: - if they relate to Health and Human Services. I don't know that we have IRS data or things like that, but there is income data, wealth data and so on that relates back to -
DR. MELNICK: Right. There's links to information from the Census Bureau, even from the Bureau of Transportation statistics, where they have accident data. The goal is to integrate information from any federal, state or local agency that we can identify that has information that is relevant to the subject matter of the department, and I think our penetration for federal agencies for the Department is a lot better than for the other federal agencies, which is a lot better than for state and local, but we are continuing to look for such resources, and we do have links to - at least to the main sites of every state health department, for example, that has statistics, et cetera.
DR. COHN: Yes. Okay. Andrew, I am going to suggest you go forward. It looks like we are having technical - and I think we all have copies of this stuff, so I think -
MR. DENT: Okay. I just want to thank everyone for having me here today. My name is Andrew Dent. I work with the Geographic Research, Analysis and Services Program within NCEH-ATSDR.
So, today, I have basically got two broad purposes. The first one is to introduce my group to you all and let you know what we do and how we fit into the agency, and the second one is to outline sort of in broad strokes how geocoding works, and then provide you some vignettes on how geocoding has been applied at the CDC in programs that I am familiar with. So -
DR. COHN: Andrew, I am going to just stop for a second. I would actually like the staff to let you talk and - I think that you are doing a great job, and I think we do have copies of this, so I think we are fine.
Michelle. Michelle, I would prefer him just to talk. Thank you.
MR. DENT: So, as I mentioned, I am with NCEH-ATSDR. My group provides GIS analytical support for all the centers. So our group includes about 25 to 30 people. We have scientists. We have social scientists. We have geographers, cartographers, medical personnel as well, and we partner with many centers to do work - cartographic production, geocoding, building of systems, analysis of data, enabling data that has been captured in the field, those sorts of things. So that is our group.
So if you ever have any questions about how GIS can be applied maybe within an area that you are familiar with, just let me know and I would be happy to connect you with our resources.
Of course, GIS in public health, we typically look at the roles that GIS can play in such an endeavor. One would be to characterize populations. Another would be to visualize patterns. It can be very powerful in pattern visualization.
We use GIS to analyze population, health outcome and environmental data.
We also integrate disparate data sets on a single platform. So that is layering data together, looking at how features in one layer relate to features in another layer. That is key to what GIS can provide public health.
And, also a very powerful use of GIS's communication, how do you communicate sophisticated results to maybe a community or to a group of individuals who aren't familiar with the data that you are describing. Often, a map can be a really good way to do that.
Our program, the Geographic Research, Analysis and Services Program, was actually begun in 1988 through a joint program with EPA and DOE. We have a longstanding role in providing mapping and special analysis support for both ATSDR and the CDC.
Typically, in the beginning, our activities focused on site-specific work, hazardous-waste sites, what people were near those sites, how could they have been effected or exposed.
Now, we have been branching into different sorts of surveillance, research activities that actually partner with different centers at the CDC.
Okay. What is geocoding all about? It is the process of developing coordinate information - such as latitude/longitude - based on geographically-referenced data.
The key is geocoding can be accomplished using many different mechanisms, but it always involves linking this geographically-referenced data to a known position on the surface of the earth.
As Dan mentioned before, geographically-referenced data is data that contains an identifier that can be linked back to a place on earth, and I am going to elaborate on that a little bit further.
We are on the geocoding to a street center line slide. I am going to go through three main ways to geocode.
The first one that you are probably most familiar with is geocoding to a street center line. That is the process where you take an address, match it to a road segment and use that road segment to derive a location for that address.
For instance, in this example, we have 100 Oak Street. We want to know where that is. We match that to a nationwide network of road-segment data, find the segment that matches and use linear interpolation to place the point along the line. So that is probably one that you are very familiar with in different studies and research that you do.
Also, though, geocoding to a point is just as valid. The example I have here is geocoding to a mile marker. For instance, many state DOTs can provide you files with mile-marker locations. If you have data, for instance, accidents or hazardous releases that have occurred, you know, on an interstate system that has mile-mark information, you can match that back to your point information to drive the latitude and longitude for that event that you are evaluating.
The example I have here is a project that we are currently working on. It is an analysis of border-crossing deaths along the U.S.-Mexico border.
The information came in referencing mile markers. So we obtained mile-marker point locations and joined that data back to the mile markers that we had.
Can everybody hear me okay?
I also want to emphasize the fact that geocoding to areal units is a very important way that we can attach latitude/longitude coordinates to data.
In the example I give here, we are matching records to centroids of polygons, and we are then storing the coordinates of the centroids and attaching those to the record that we are interested in working with.
In the handout, I have a slide that illustrates one project where we actually have applied those, and that is the Metro Atlanta Birth Defects Project. It is part of the Environmental Health Tracking Network Initiative, and we are using - instead of using a road network to locate the positions of births in the City of Atlanta, we are using parcel data that we have actually acquired from local GIS departments in the city. So they have gone to great pains to have an address attached to each parcel, because they need their taxes, so they have gone to great pains to do that, and we are leveraging that. We are taking our records that we want to spatially locate, joining those to parcels and getting a really good estimation of where these people are, where these individuals are.
And the overall goal of this project is to link air-quality data to birth-defect health-outcome data, so we have to be as specific as we can about the locations of the mothers, and this is the best way to do it, not linking to road segments, but linking to parcels.
Okay. I am on the geocoding and surveillance systems slide.
Of course, everyone is familiar with a variety of surveillance systems at the CDC, for mortality/natality statistics to the BRFSS.
Geocoding this data enables researchers to analyze the relationship that this data has to other features or other factors that exist in an area.
One of the things that I like about applying GIS techniques to existing surveillance databases is that the surveillance initiative is typically an ongoing, established thing. We are just overlying GIS on top of that. GIS is a partner with the surveillance system. GIS doesn't have to be the whole system. It is a helper. It helps physically locate features that are already being accumulated by programs at the CDC.
One example that I wanted to provide for you of a surveillance system that actually we have linked into an online real-time geocoder is the Hazardous Substance Emergency Event Surveillance System, and that is out of ATSDR.
The mission of this system, called HSEES, is to capture and visualize data pertaining to the release of hazardous contaminants in the environment. So, typically, these are emergency releases. These are accidents, train wrecks, truck wrecks, those sorts of things, that cause a release of some sort of contaminant into the environment.
Officials in 18 states currently are plugged into HSEES. So in the health department in 18 states, records are being generated that eventually end up in the HSEES system.
The key thing that I want to point out here to you is this slide that says, "HSEES Inline Geocoding." As records are submitted from the states, those states immediately go to a geocoder that we run for HSEES and we provide them a latitude/longitude that goes right back in their database. So as the information is generated, it is already being geocoded, which can be a powerful thing, because maps can be made available immediately.
Another powerful thing that isn't geocoding, but it is a way to leverage GIS data within the HSEES system is a couple of services that we provide that actually will determine the number of features within a certain buffer of an event as that event is being input to the system. So, for instance, if I am a health official in Georgia, we have a train wreck and I am entering in the information about the train wreck, where it occurred, what substances were released, who responded, all those things, when that record comes to the CDC, it is immediately geocoded with a latitude/longitude, and, also, it is attached to other information that we derived geographically, meaning we determine the number of hospitals in a mile buffer around this location. We determine the number of people in this area. We determine the number of senior-care facilities and daycare facilities and schools within a certain predetermined buffer of this accident. So, as data is coming in, we are applying geocoding.
We are also applying the use of GIS information to generate data that helps the decision makers who have to respond to this event or later on evaluate how the event was responded to.
So that is what - we really want to emphasize the fact that GIS doesn't have to stand alone. GIS can be partnered in with other systems, can be overlaid into other systems to make those systems a little bit more rich in terms of the spacial information they are capturing.
Dan mentioned HIPAA earlier, and I just wanted to touch on that. An address or latitude/longitude is, in fact, an identifiable piece of information. So that puts it - you know - HIPAA will govern those identifiable pieces of information.
How do we, in terms of using GIS data, conform to this set of standards? On the back page, I have a simple set of items that we usually look to to help us comply with any sort of HIPAA-related project.
When we are geocoding, if a researcher, say, from birth defect says, I really need this data geocoded, we ask them to strip out everything except for the address and a unique identifier. Then we can handle it and geocode it and then ship it back to them and they can integrate it back in with their existing data set. So that way, they feel good about giving us data that we can geocode, because we don't know what the data is about. We don't know what those cases or records are.
Another thing to look out for is when you are mapping, you don't want to place a point right on top of an address, because that could basically be reverse engineered to determine, potentially, the person's identity. So we - occasionally, we'll randomize point locations, and, at other times, we will actually just aggregate these points to areal units like a Zip Code, Census units, block groups, tracts, et cetera.
So those are things that we sort of have in the tool box to deal with some of the compliance provisions that HIPAA has.
And just to close, I just want to, once more, emphasize that geocoding is not just geocoding to your road network, but it is geocoding to areal features. It is geocoding to point features that you have available, and, also, it is very important to look at the ways that GIS data and GIS processes can be leveraged in existing surveillance efforts that we have, existing data-gathering efforts that we have here across all the centers at the CDC.
And I would be happy to answer any questions at this time.
DR. COHN: Dan and Andrew, thank you both for very interesting presentations, and, actually, it is sort of refreshing not seeing Power Point up on the screen here from time to time. (Laughter). So thank you. I think you did a great job going through the slides.
I actually want to start, myself, with one or two questions, just to make sure I understand. Obviously, I was trying for a while to figure out how Dan's work relates to, Andrew, your work, and I guess I am wondering - I mean, I can imagine either it has no relationship or it is very tightly linked, and sort of going along with what Gene was asking about linkages, does Dan's work provide augmented linkages for your work in terms of your databases or -
DR. MELNICK: I think the way to think about it is that Andy has described one application of GIS to an analysis system that is happening at CDC, and we wanted you to hear that, so you could see a real live example of how this is used and what it is used for.
What we have been working on is at the metadata level, helping people find Andy. (Laughter). I think that is basically what it is.
One way to think about this - and, now, I am going to reflect the fact that I did work for about 15 years as a - what I call - the way I describe it is as a very privileged researcher in the Library of Congress. The way to think about this is that Andy's got the books and we've got the card catalogue.
DR. COHN: Okay. Okay. Thank you for that clarification.
I have one more question and then I'll open it up to others, and I just can't help myself on this one, but there are three different ways you have talked about geocoding. The question is do they map together?
MR. DENT: Do they map together? Yes. Each time you geocode, you derive coordinates for whatever event you are geocoding. Typically, those would be a latitude/longitude position. So if you are mapping an address - matching an address to a street center-line network, that address would be basically a latitude/longitude attached to that, and the same so for other features.
If you have a highway-death database and you want to know where these positions are, and all you know are mile markers, you would be able to match that to a mile-marker database, and, then, each location of accident would have a latitude/longitude.
DR. COHN: Thank you.
Other questions? Kevin and then -
DR. VIGILANTE: Yes, I just have a very straightforward question. It sound as if you - what you provide is a service, it sounds like, to - is it to departments of public health at the state level or - I mean, who gets to use your service and who doesn't? I mean, I suppose if I sent you something tomorrow, you probably couldn't geocode it for me.
MR. DENT: That is a great question. We have - as you know, ATSDR has state partners, and we do work for those state partners. We do work for all parts of the CDC, but, occasionally, there has to be a little negotiation, you know, when a project is initiated. Maybe we wouldn't have enough resources and we would have to request additional resources from maybe your agency to help us complete a task.
DR. VIGILANTE: But it would have to be a public - In other words, you said a researcher, so somebody at some academic institution couldn't leverage your - so it would have to be a federal or state agency.
MR. DENT: Well, it would depend on the project. We have done work for non-governmental organizations. The Migrant Clinicians Network, we have done work for them, and it does - those non-governmental projects, maybe an academic institution, those are sort of taken on a one-by-one basis, but I have a director who really wants to be involved with the different facets of public health, and she is very open to working with people, say at Emory in the Public Health Department or State of Georgia Public Health or across the nation in state health departments.
DR. STEINWACHS: I was just wondering if you do any things that get you involved internationally. You know, for an example, many Americans originally were born in other parts of the world, and so are you dealing with databases that might actually look at characteristics linked to people or other things around the world or is this only - U.S. is pretty much what you are -
MR. DENT: Well, for the U.S., we have a wide array of data available. Around the world, we have a smaller amount of data available, but we are trying to provide support in those areas.
We work in the Director's Emergency Operations Center at the CDC. In fact, we staff it basically eight hours a day, five days a week, and 24/7 in emergencies, but for the SARS response in 2003, we did mapping of locations around the world to help the researchers who were involved in responding to that deal with what data they had and what was happening. Some of the flu stuff we have done international maps for.
The only problem is we don't have the rich socioeconomic data available for other countries that we do here in the States with the Census.
DR. TANG: I think this is really very, very exciting information and application, and I just have a question on your last slides about HIPAA compliance, because I am not sure I understand what - I appreciate your sensitivity to it and the randomizing of the point location, so on and so forth, but why would it have any special need for concern? So if you are involved in a research project, it seems like it would be covered under the IRB approval. If you are involved in public health, it would be covered by exclusion. Is there any special sensitivity that - why you raised that question?
MR. DENT: I raised it because, occasionally, we do work and our organization does not come under the IRB umbrella, and people have already dealt with the IRB situation within their group, but when they have to ask us to assist them, we have to provide them assurances that what we are doing is not going to violate anything.
But, right, if we were under - for a particular project, if we are under that IRB umbrella, then some of these would really not matter as much. Right.
DR. LENGERICH: Very good. Andy, I was wondering if you can - if you have examples of an analyses that you have done that have been more associated with the healthcare system or outcomes of health. I guess I am particularly interested in disparities between populations, access to healthcare and addressing that sort of through this GIS GO coding system, because I think - it seems like it is a very powerful tool in that sense as well, and so I am wondering if you have experienced or if that is part of what you would do then for other parts of CDC or other individuals or organizations.
MR. DENT: It most definitely is part of what we would do. I can't think of a good example, off the top of my head, where we have analyzed that, but if you mean taking a look at the locations of health clinics, identifying how far they are to populations of need, identifying if they are being leveraged by the people who are most nearby and those sorts of things, yes, exactly. That is what we could provide somebody who is interested in studying that.
DR. LENGERICH: Well, and I would guess - I was also thinking about the quality group, and the quality of the care that might be provided or the - at that particular clinic or set of characteristics of a set of clinics. Seems like that could be useful information to link to particular outcomes - health outcomes.
MR. DENT: Right. Right. Yes.
DR. LENGERICH: In driving health policy and healthcare intervention efforts.
MR. DENT: Exactly right. It would all - what you are talking about is spacial - how close were the people to the clinics that they -
DR. LENGERICH: And the characteristics of the clinic or the populations of the clinic being seen.
MR. DENT: Right. What was their result after they attended that clinic or were seen at that clinic. We would definitely be able to assist in a project like that. Of course, we would have to have the data that you are describing to fully work through that. What were the health results? Who was seen? What was the specialty of the clinic? All those sorts of things, but, yes, that is something that we have some projects beginning in.
DR. VIGILANTE: Just one more, and I hesitate to ask this because it seems almost foolish, but are there any ways you can use this methodology to address issues that are relevant to homeless populations? Are there any creative ways that you can actually locate people who don't have homes or addresses?
MR. DENT: I have never worked on that before. I imagine maybe you could possibly obtain some shelter data that would help you arrive at some numbers of the homeless population in certain areas, but that is a good one. It would be shelter data, maybe.
MR. SCANLON: There are other statistical techniques to actually - not geocoding, but there are actually others to sample and estimate.
DR. MELNICK: I think that is a very good example of where the work that we are doing is helpful, because what we are trying to do is to cover resources that you wouldn't ordinarily think of as public-health resources. For example, that kind of information is going to come out of HUD, which has conducted surveys of the homeless population, and what we are attempting to do in the work that we are doing is to tie together the work of the department with the work of other agencies that might have collected information like that. So, yes, I don't know off the top of my head whether we actually succeeded in covering homeless populations in some of the resources that we have covered, but, indeed, it is part of our goal to cover things like that.
DR. COHN: Well now have our last question, actually, from our retiring chair, please, John.
DR. LUMPKIN: And I am just a little bit curious, because, obviously, the power of this tool, particularly in monitoring outbreaks or looking at spread of disease, is really quite powerful.
Having used this in looking - a few years back, when we were looking at patterns related to outbreaks of emerging infections, it seems to me that a human being looking at a map takes away a different impression than just a bunch of dots, and how have you looked at the process of automating ability of doing analysis of geocoded data that identifies patterns that can be done so that - well, for two reasons. One is to confirm a pattern which may be apparent, but not real, and, second, is to identify patterns that the human eye might miss?
MR. DENT: Right. You are exactly right. You look at a map, you get a general impression.
Our director is a doctor, and she has been involved with some cluster investigations. So she has been involved with using the spacial stand(?) statistic to arrive at some of these different estimations of clustering. So, yes, it can be applied. Does that answer your question? Okay.
DR. COHN: Well, I want to thank you both for, I think, what has been a fascinating conversation. Obviously, I think we're all - you talk about linkages and all that, the question is is this yet another tool in terms of doing it in a reasonable fashion that obviously doesn't violate privacy or confidentiality concerns. So I want to thank you both very much.
Now, what I am going to do is to give everybody a five-minute stretch break here in just a second, but I did want to sort of comment that our retiring chair let me know last night that he is leaving at 12 noon. So I just want to take this final occasion to - (laughter) - thank him for his service, for his eight years on the committee - Hear. Hear. (Applause) - as well as the six years he has been a superb chair. So thank you, John.
As Marjorie and others have commented, we don't let people go very easily, and we have, obviously, already asked him to be an ongoing consultant to the Executive Committee. So we thank you for your ongoing hope, wisdom and guidance. So, John, thank you.
Okay. With that, let's take a five-minute break.
(Break)
DR. COHN: Okay. What we are going to do is obviously start with the reports from the subcommittees and workgroups.
DR. COHN: We are going to change the ordering a little bit, with the action items going first, and we have actually asked Mark to start with the report from the Subcommittee on Privacy and Confidentiality, and the letter that we heard yesterday. Please.
Agenda Item: Subcommittee on Privacy and Confidentiality – Action Item
MR. ROTHSTEIN: Thank you, Simon.
Our report is in two parts.
First, I want to recognize John Houston, who will go through the revisions of the letter that we presented yesterday on - medical devices.
MR. HOUSTON: Based upon the feedback that we got yesterday, as well as the feedback from the Privacy Subcommittee meeting this morning, I have modified the letter, which everybody should have copies of in front of them. It is red-lined copy, so the language, again, should be readily apparent.
What I'll do is go over what I think are the most substantive changes and why they are made.
In the first paragraph, in response to Justine Carr's suggestion, we added a sentence describing why we actually did the hearings on medical equipment, and the sentence reads, "Because much medical equipment in use today either stores protected health information or can actually network with other systems that store PHI, such medical equipment needs to comply with the security rule. Therefore, NCVHS held hearings to gather information about the effect of the security rule on medical devices."
The next change was in numbered paragraph 2. In that case, we added some clarification, primarily to the last sentence, which reads, "Further, some customers update medical equipment with the latest software updates from third-party software and operating-system suppliers without first verifying whether the update effects the safe operation of the medical device for its intended purpose."
The next change is a paragraph - the second paragraph on the second page, and I'll read it in its entirety, and it relates to the FDA, and it reads, "Another witness representing the FDA stated that the FDA's primary focus has historically been the safe and effective use of medical devices, and, therefore, the FDA has not evaluated security in approving the use of a medical device. The witness further indicated that it is the responsibility of the medical-device manufacturers to design their devices to enable covered entities to comply with the security rule."
We added this sentence, "Subsequent to the hearings, the FDA issued a guidance document entitled, Guidance for Industry Cybersecurity for Networked Medical Devices Containing Off-the-Shelf OATS(?) Software," and then I provided a link to the actual guidance document.
The next change, then, related to the recommendations. The primary change is the actual first bullet point of the recommendations where I'll read it in its entirety, which says, "HHS should provide guidance to covered entities to assist them to bring medical equipment into compliance with the security role and to otherwise take appropriate steps to make medical equipment secure; e.g., protection from viruses that may impact the proper functioning of the medical equipment."
That was to address Paul Tang's comment yesterday.
Then the other major change to the recommendation was simply the reordering of Recommendations 3 and 4. I put them in opposite order.
Otherwise, as you can see, there's just minor changes to the document to make it a little bit more clear.
DR. COHN: Okay. I think you have done, actually, a good job cleaning this up and improving the letter, so thank you.
People have questions? Kevin.
DR. VIGILANTE: I don't know if this is - how strongly people feel about this, but I think one of the points that Paul was making yesterday was that there actually - comes in the first modification that you made. There are actually two reasons to be concerned about this. One is that - is the PHI reason. The second reason is is that these devices can actually be taken down by a virus and caused to - so it's not - there is a PHI issue and there is a functioning issue, which actually represents a danger to patient care.
MR. HOUSTON: Right. Safe use, and I think we tried to address that on the first page. I know it is not -
DR. VIGILANTE: Well, what I would - just from an organizational point of view - if you are saying because such medical history - I mean, I think there are two reasons why - I think that paragraph saying why this is important, there's probably two reasons. It's because it is a source of personal-health information, and, second, because it becomes vulnerable to attack or malfunction and may jeopardize patient care, if the functioning is compromised.
Now, the question is is the intent of this letter to be limited to HIPAA concerns? Because the HIPAA concerns revolve around - more around PHI than safety concerns.
MR. HOUSTON: Well, we thought it was broader than that. We did decide that, I think, that these were important things to add, though. I mean, obviously, our primary concern related to HIPAA compliance, but I don't think you can necessarily do that in a vacuum, and it was - at least, I think the way we -
DR. VIGILANTE: So if you are going to do that, then I would say, you know, with regard to HIPAA, this is the concern. However, there are other reasons to be concerned about device security, such as patient safety and the possibility that these devices may malfunction if not secure in that fashion.
MR. HOUSTON: Well, we do talk about - I mean, I understand your point, but we - not to be defensive, I think we do try to talk about -
DR. VIGILANTE: You do it towards the end. Just from a - really an argument construction point of view, I probably - that is the first point I would probably mention.
MR. ROTHSTEIN: So, in other words, let me see if I understand what you are saying. We add a sentence between the one that begins, because, and the one that begins, therefore, that would say something like, In addition –
DR. VIGILANTE: Yes, exactly.
MR. HOUSTON: I can craft something.
DR. COHN: Yes, I think that this is - I mean, I - think we've got the idea, and I would imagine that this would be something that if we passed it, we pass it with further wordsmithing of the Executive Committee or just further wordsmithing period.
MR. BLAIR: I would like to move that the letter be accepted with this additional sentence being added.
MR. REYNOLDS: Second.
DR. COHN: Any discussion? Other comments?
All in favor -
(A chorus of ayes).
DR. COHN: Opposed? Abstentions?
Okay. Well, John Paul, hopefully, we'll get a revised version -
MR. HOUSTON: Yes, what I'll do is - do you want me to send it - I would rather go through Mark -
DR. COHN: That would be fine.
MR. HOUSTON: But if I give it to Mark or email it to Mark, he can forward it as appropriate.
DR. COHN: Okay. Mark, do you want to provide
other updates on the subcommittee?
MR. ROTHSTEIN: Yes. Thank you, Simon.
The Privacy and Confidentiality Subcommittee met this morning, and I just want to update you on our plans over the next several months.
As previously indicated, our second hearing on NHIN, this time focusing on provider perspectives, will be held March 30 and 31st in Chicago.
Hearing number three on NHIN, which will focus on health-plan experience with electronic health records and IT perspectives on possibilities for new types of systems will be held on June 7th and 8th in Washington.
Our tentative plan is to have a proposed letter drafted in time for the September meeting of the full committee.
We also discussed our fall hearing schedule, and there are three areas that we have identified as being our top priorities.
First, under HIPAA concerns, we want to take a look at the use of notices and acknowledgments and whether they are working, and, if not, why not, and what can be done about it.
The second is to deal with requests by patients to correct their medical records, and to see how that is proceeding or not proceeding, and possible recommendations on that.
And third is an oldie, but a favorite for discussion, and that is accounting for disclosure. This will be the - at least the eighth time that - (laughter) - we have looked at this issue, but we'll have more data, as time as gone by.
The second area in which we are interested in pursuing hearings is on the issue of accurately linking patients to their information, formerly known as individual identification and this would be a joint hearing with the Subcommittee on Standards and Security.
And, then, finally, personal health records and privacy issues, another topic for joint hearings with the Subcommittee on Standards and Security.
So we will be quite busy through the end of the year.
DR. COHN: Yes, you will.
Any questions for Mark?
Thank you. Sounds like a very aggressive agenda. You'll probably want to think about, now that we have new members on board, starting to poll people for meeting dates for the last half of the year.
Agenda Item: Subcommittee on Standards and Security, Action Items
DR. COHN: Okay. Well, with that, let's move on to the other action item, which is the Subcommittee on Standards and Security, and the letter. Harry, do you want to -
MR. REYNOLDS: Yes, be happy to.
You have a copy of the letter in front of you as a group.
I'll quickly just point out the changes, and only spend a moment on the ones that are of any significance.
If you turn to page 5, the first change is pretty much spelling out public key infrastructure.
On page 6, at the bottom, we just deleted a word.
Page 8, we just spelled out the electronic labeling system is ready and then estimates that the full - and then continued that sentence on the top, pretty much what we agreed to. Well, it is exactly what we agreed to yesterday as a group.
Would like to have you focus on page 9, on Recommendation 7.2. We have had a friendly amendment. If you will look at the projection screen, we have had a friendly amendment to the letter. So I would like you to read the paragraph, so you can see how it flows. I'll - "HHS should take immediate steps to accelerate the promulgation and implementation of FDA's drug-listing rule in order to make the inclusion of RxNorm in the 2000 tests as comprehensive as possible."
The change is to add, "Delayed promulgation may imperial the success of the 2006 pilots," and then, further, "This is also necessary to achieve the patient safety objectives of MMA."
The floor is open for comment.
SPEAKER: "Imperil" sounds like, you know, you are endangering life and limb. That seems like a very strong word, but -
SPEAKER: Jeopardizes.
MR. REYNOLDS: "Jeopardizes" is the recommendation on the floor.
DR. COHN: People comfortable with "jeopardize"? Okay. That is probably a little -
MR. BLAIR: Are you suggesting a change in the word there?
DR. COHN: Yes, from "imperil" to "jeopardize." Okay, Jeff?
MR. BLAIR: Yes.
DR. COHN: I think we kind of looked around at each other, looked like it was another friendly amendment. So -
MR. REYNOLDS: And that would be the appropriate process.
Okay. Going to page 10, just eliminated - deleted a couple of words there.
And, then, there were some mentions, and if we go - I'm sorry. We inserted - on page 10, we inserted Patient Safety. That's right. There was a discussion that we should make sure we pointed out patient safety there.
Next, if you go back to D, which is a list of acronyms, there were a number of questions about glossaries of terms, and there were some things pointed out. So if you go back to page 18, we expanded Daily Med, Drug Knowledge Base.
Then on page 19, RxNorm and SCRIPT, we adjusted those also.
And then on page 20, the Structured Product Label, we expanded those definitions, too.
So that would be the extent of our changes, based on our discussion yesterday, and the only change you had not seen was the one we just adjudicated a moment ago.
DR. COHN: Questions? Comments? Sounds good. We would entertain a motion.
MS. BEREK: I think we should make Harry read it again. (Laughter).
SPEAKER: The whole thing. That may imperil his health.
DR. COHN: I think Judy is already feeling nostalgic.
MR. REYNOLDS: It'll be coming out on - Check the Home Shopping Network. It'll be out on CD later on. MR. BLAIR: And it is my job to move that we accept this letter with that additional modification suggested by John, which -
DR. COHN: Okay. Discussion? All in favor.
(A chorus of ayes).
DR. COHN: Opposed? Abstentions?
Okay. It passes. Thank you.
MR. REYNOLDS: Do you want me to discuss what else we did in committee?
DR. COHN: Yes, please.
MR. REYNOLDS: Well, first, we all sat there waiting for Simon to be the chair again, and he wasn't. So we kind of grouped up.
DR. COHN: Got over that, huh?
MR. REYNOLDS: During the remaining time on the breakout session we came up with a few things.
We pretty much focused on a list of the things that we know that we have to keep an eye on, and I'll just give you the categories.
HIPAA, obviously, continual followup on e-prescribing.
In alignment with Mark, as he mentioned, on the privacy, the linking patients to their information is going to be a key consideration, especially as you move into electronic e-prescribing, you move on to electronic medical records and everything else, the patient has to be the patient has to be the patient. So we need to figure out how to do that.
The Federal Health Architecture, you heard David Brailer talk about that yesterday. That is obviously a subject that we are going to need to put -
And then the SDOs and how they work together, because as more and more of these standards come out, I think we saw a wonderful working relationship in e-prescribing when we heard us talk about HL7, NCPDP and the industry all working together and really turning some things around pretty quickly. So we want to work with that.
Another category is decision-support terminology, those types of things. The electronic health record, especially HL7 is working on some things. DSTU and CCIT, and then other interoperability standards.
Our next hearing is April 6 and 7. We'll be HIPAA ROI focused, along with maybe any other HIPAA items that we want to talk about, and then we'll be planning how these other subjects fit into July and forward through the rest of the year. So that is what we covered.
DR. COHN: Okay. Well, great. Any other - please.
MS. GREENBERG: Well, I just wanted to clarify, then, that this - I realize Mark has - Okay. Excuse me.
DR. COHN: You clarified? One is June and the other is April.
MS. GREENBERG: Your meeting is April 6 and 7, and Privacy is meeting June 7 and 8. Okay.
DR. COHN: Yes, that's right. We are handling that. Okay. Yes.
And I would certainly advise you as - with the privacy and confidentiality, this is the time to begin to think about setting dates for the last half of the year.
Jeff, do you have any other additional comments on this?
MR. BLAIR: No, thank you.
And, Simon, we miss you, but Harry and I, I think, are going to really enjoy working together.
DR. COHN: Yes. Yes, well, you are not going to lose me that easy. I am still a member of the subcommittee. Well, thank you very much.
Agenda Item: Subcommittee on Populations
DR. COHN: Okay. The next report is from the Subcommittee on Populations.
DR. STEINWACHS: We had a very productive meeting. It was good to have Simon there, so that we could talk about developing the agenda and we had the immediate issues, which I'll talk about in a moment, of finalizing the recommendations out of the Population Report, but talked a fair amount about how - the value of having both - taking, looking for targets of opportunity, such as whether or not Medicare Part D and the drug benefit might provide some of those, and the idea of short-term and longer-term targets, and the idea of having a customer for what we want, and so we decided, as a committee, that we would, between now and our next meeting, begin to share by internet mail ideas for what the agenda would be and maybe have a conference call and some other things about it between now and the June meeting.
Most of the work we'll be doing between now and June really relates to finishing up the Population Report and those recommendations. So that is the major work item.
Certainly need to acknowledge and thanks to Simon, who asked the good question about - Dr. David Brailer about the public health and population part of the National Health Information Network, but that I would see as one of the longer-term agendas, but, certainly, a very important one for the Population Committee of how we can make recommendations that look to taking advantage of that network for - population health.
The other that we talked about was trying to look for ways that there's complementarity between the Quality Workgroup and what the Population Committee does, and, in the simplest of terms, there are certainly areas in which - where the Quality Workgroup will be looking at quality of care, whether those are metric issues or ways to collect data at the individual and organizational level. The Population Committee is concerned with those same issues at the population level, and so we thought that there were going to be, in this agenda-setting process, some ways in which we would have very complimentary agenda items. We have good overlap between the two and grateful that people want to serve on both committees, because I think that is going to make it even more productive.
On the Population Report, we shared with you yesterday sort of the structure of the three areas in which we plan to make recommendations. Committee members are going to be looking to make sure they are comfortable with those recommendations and the background that goes with that. We will be holding a conference call to try to settle those, and then move the report forward such that we can bring that to you in June, those areas that relate to standards for collecting data related to race and ethnicity, and, in some cases, language, methodological-research issues and how to enhance access to HHS data on race and ethnicity.
A couple of other items came up just to share with you. One, Russell was pointing out an item that had been discussed before of substantial importance, and that is issues about the different kinds of arrangements, limitations, so on of access to data within the Department, whether that is data that comes out of NCHS or other kinds of survey efforts, and Jim Scanlon, I think at one time, had had someone who was going to try and pull together a report on that. That person left. I think there's now someone else. So there is some hope that we will have some staff work to try and give the committee the kind of background information we feel we need to understand variations and limitations on access, because we have been looking at some of the issues around data centers and how to make the information that the Department has that is useful for not only researchers, but, many times, people in communities and so on to have ways to look at population information directly that is relevant to their area. When you raise things like geocoding, that certainly even brings it even more when you think about the potential of some of that. So I think that is going to move ahead.
Another came up out of a discussion, sort of a where to go, but I think was stimulated by the presentation of the excellent recommendations on the Medicare drug benefit that came forward is whether or not there might be an opportunity - and I think Carol raised this - of using the enrollment process for the Medicare D benefit as a way to enhance information that Medicare has on race, ethnicity and language, and there was some real discussion about maybe the strongest business case might actually be around language information, and so Jim Scanlon said that he would have some contact with CMS around this and try and understand where things were, so that we would have a sense of is this something that we ought to be moving on rapidly if we are going to intercept that train or - Judith says yes.
DR. COHN: The train may be -
DR. STEINWACHS: May be too late for the train.
MS. BEREK: It may be too late for the train, and it is an area of personal interest to me, getting language information, and you'll have to push very hard. The train - it may be too late, but it is also extremely expensive to add that, and once you get it, you have to be prepared to use it, so there are serious problems -
There is one regional office that uses a translation service on their phone calls, which is the New York Regional Office, and you might want to get in touch with them to see how it's been used and Nilsa Gutierrez is, in fact, on the Populations Committee, although she is out of town at a meeting this week. So you might want to go through Nilsa.
DR. STEINWACHS: Okay. Well, we'll see if it's -
MS. FRIEDMAN: I would just like to add that both our 1-800-MEDICARE number and our HIPAA hotline also offer information in Spanish.
MS. BEREK: Yes, the only language we do is Spanish, routinely.
DR. STEINWACHS: Well, there's also, certainly, if you look at issues around quality of care, some other concerns is that the language issues and the expectation that physicians are going to offer translation services in their offices, and there's also HIPAA issues. So it comes in both certainly at a primary-service level, I think what you are saying, Judith, for Medicare, CMS, and a secondary level in terms of -
MS. BEREK: In Medicaid, we have a lot of language services, and we - in most of the states that have 11-15 waivers, we require all kinds of language services on the part of health plans for them to enroll people, because one of the things that happens with a mandatory managed-care plan is you might lose the choice of having picked your provider because he or she speaks the language that you speak, and so there is probably - there's a lot of information on how those language services have worked in Medicaid, and I can - before I disappear - hook you up with some of the people who have done that.
DR. STEINWACHS: Okay. That would be great.
So that was another very productive item that came out of our discussion.
MS. GREENBERG: Just a little bit of clarification. It was my understanding that the suggestion - which, as you said, may be already too late, because the train has left the station - but was to use that enrollment process as a vehicle for just collecting information about - better information about race, ethnicity and primary language, which could then be used both to identify the need for services, but also to track quality and outcomes and all of that.
DR. STEINWACHS: I think maybe the comments were a part about what the business case is for it. Why would CMS want to reroute the train right now anyway.
MS. BEREK: Well, it is both why would you want to reroute the train, and, as an agency that provides services, does collecting that information put you in a position of then having an obligation to provide the services, which I can discuss separately, but that is just - you know, you are - it is a good question, and just sort of think about it as it goes forward.
DR. COHN: Okay. Don, as usual, not an easy issue to think about.
DR. STEINWACHS: Well, you know, we wanted the Population Committee to be topical and hardhitting, because we noticed the other committees are. So this was one of the recommendations. We thought we would just go for it, you know, and, you know, and so - help me make sure I don't trip over anything too big on the way. (Laughter).
MS. BEREK: No, and go for it -
DR. COHN: Yes, and actually, Don, what I would say is is if there is something there - and, once again, I don't know, whether it is or not - it actually sort of aligns with the current Population Report. So I am presuming that if, indeed, it is something, it could come forward in June.
DR. STEINWACHS: Yes, that would be great. Yes. Yes.
DR. COHN: But, I mean, or otherwise it probably won't matter. I mean a September recommendation from people being enrolled -
DR. STEINWACHS: Well, we'll find out and share it back with you, Simon - Yes.
DR. COHN: - starting in - you know, the last quarter of the year is going to be a little late. So -
Okay. Don, thank you.
MR. REYNOLDS: Let me - another quick comment on this. I was remiss - any time you put together an 18-page letter, it took a lot of hearings and a lot of time, and I think the committee would like to formally thank Maria Friedman for all the effort that she makes; and in a world where all of us seek consultants at different levels and different qualities, Margret, who has been helping us, is a star. So I wanted to make sure that was on the record. She stepped out, but I wanted to make sure, before the meeting got done, that we did recognize it through them, because we got to sit and listen and work on it. They had to put it altogether. So thank you -
DR. COHN: Yes. Hear. Hear. (Applause). I hope Marie got that. Okay. Anyway. (Laughter). Good. Okay. Harry, thank you.
Agenda Item: Workgroup on Quality
DR. COHN: Okay. Our next report, Bob Hungate, Workgroup on Quality.
MR. HUNGATE: A brief report. We met this morning, and I would like to formally welcome our two members - two new members, Carol and Bill, who have immediately participated in the future planning.
If there is anything that is accurate in describing the quality, it must be that it is complex, because we had an active, dynamic discussion and concluded that we were not going to quickly arrive at a future plan.
We did make one unanimous conclusion, that the charge from 1999 no longer applies and should be regarded as history, and we need to do some serious work toward developing a plan which has medium-term, middle-term, long-term plans, so that there is a process of the Quality Workgroup doing the things that need to be done for consumers in quality, and I think that is the best way of articulating our broadest goal.
We, to that end, are going to be scheduling a retreat, if you will, where we try to take our own inputs and work them into a workable work plan and augment that by drawing some others into that process, so it is a little more broadly based than just the committee itself. Probably try to do that in June. It will need some careful planning beforehand, and that'll probably call for a couple of conference calls which we'll be getting scheduled.
We will miss our outgoing two members, John Lumpkin and Peggy Hendrich, both of whom made important contributions, John, especially in the institutional memory of getting a Quality Workgroup that knew nothing about what preceded us, a background to get through the report which is now basically finished.
We have also conducted hearings which will need to be summarized in some effective form. The minutes of both of those sets of hearings are on the website and available. There may be some conclusions we can draw from those that relate to the next work plan.
DR. COHN: Yes, I guess I would speak for myself, but I want to thank you all, as having sat in on the Quality Workgroup, I think the meeting this morning - I think the idea of going back and revisiting the charge is a very, very good idea, and I think will help. I think we'll have a better workgroup as a result. So thank you.
Okay. Anything else?
Okay. Also happy to have two new members on the workgroup. So good.
Now, I will just briefly talk about NHII and then the Executive Subcommittee.
DR. COHN: NHII Workgroup met yesterday from five to six. Mary Jo Deering isn't here, I don't think, but she is obviously - Is she here? Oh, there she is. Mary Jo, thank you very much for putting together a draft agenda for the April 26-27 hearings. We'll obviously be continuing to refine it, but this will be another set of hearings looking at issues of personal health records.
I think we are probably also going to see if we can get the Federal Health Architecture people in, potentially, depending on where they are, for at least a first glimpse. I think we'll be hearing about them in multiple venues. I am sure they are going to have a piece to say in June, but, once again, at least a beginning view of what this is and how it plays out, knowing that various parts of the NCVHS Subcommittees and Workgroups are going to have different parts of the architecture. I think, NHII probably has high-level. Standards and Security probably has a lot of the more in-depth substance there, and, then, obviously, there is going to be privacy and confidentiality issues also. So it is going to be everywhere.
Oh, I forgot. I knew there was another committee I hadn't thought of. Populations, too. Okay.
So I think we'll be looking at this from multiple different aspects, and, obviously, it is going to be a full committee issue as we move forward.
So future meetings of the NII Workgroup are to be determined, but, obviously - hearings, and we will be looking towards additional work plans for the rest of the year.
MS. GREENBERG: What are the dates of the April meeting?
DR. COHN: April 26th and 27th.
MS. GREENBERG: Okay. In D.C.
DR. COHN: Yes, in D.C., actually, at the Holiday Inn a couple of blocks from here, as I understand. Okay. And that's, I think, been a published date, at this point.
Agenda Item: Executive Subcommittee
DR. COHN: Now, the Executive Subcommittee is having conversations. We are actually trying to schedule - I mean, normally, we have a full-day meeting in the summer at some point. I think we all saw, as we began to come together with new members, obviously, asking everybody to revisit goals and strategies and work plans, that it would make a lot of sense if we could actually get together for a face-to-face meeting earlier rather than later. So far, that has not - as you can imagine, knowing everybody's schedules plus the additional subcommittee and workgroup meetings that are being scheduled, this is not an easy thing, and we may - Marjorie and I, on Monday, will be revisiting dates and seeing if there are any other dates we can eke out. We may wind up turning them into a couple of conference calls. We are just going to have to be flexible about that, but, certainly, I really am charging the Executive Subcommittee, at the end of the day, to be really looking hard at all of the subcommittee work plans and workgroup goals, agendas, et cetera, that are coming forward, so that we all feel that we are getting a little more aligned. So I think that is really the plan there.
MS. GREENBERG: We may - for the spring, we may need to - as you said -
DR. COHN: Be flexible. Be flexible. (Laughter).
MS. GREENBERG: - step back and have a few conference calls. Be flexible, but we are still going to aim for a late summer in-person meeting?
DR. COHN: I think that will be the plan.
MS. GREENBERG: Okay. So we need to poll for that, too.
DR. COHN: Also. Exactly.
MS. GREENBERG: So we'll talk on Monday, right?
DR. COHN: Exactly. That's right. Used to think that John was the one who had the bad schedule, but anyway - (laughter).
Agenda Item: Future Agendas for NCVHS Meetings
DR. COHN: In terms of future agendas and dates for future NCVHS meetings, June 29th and 30th is the next full committee meeting. September 8th and 9th after that, and November 16th and 17th. I suspect some time in the next couple of months we'll probably begin to identify and decide on 2006 dates.
MS. GREENBERG: Right. Now, that we have the new members, we will definitely - we need to poll for 6000 - 2006. 6000, I don't - I won't be around, actually.
SPEAKER: Marjorie still plans to be here in 6000. (Laughter). There will be an NCVHS meeting -
MS. GREENBERG: We don't normally go all the way to 2007 -
DR. COHN: No, no, but we'll do all of 2006.
MS. GREENBERG: We would do all of 2006.
DR. COHN: Yes. I will promise the committee that we will endeavor not to have meetings that start on Monday or end on Friday.
Now, I think there are obviously a number of agenda items that I think we are sort of seeing for the June meeting, and, obviously, this will be further fleshed out. I mean, the notes I had made talked about, hopefully, a presentation on the status of the RFI responses, and I think David had sort of mentioned that. I think we are all hoping that there will begin to be some substance by that time.
I think there is also a need for a briefing on the FHA, since we are all - Federal Health Architecture, not that other FHA, but since I think everybody on the committee needs to be - will have a role or a perspective on this. So everybody needs to get at least informed and briefed on that.
We, obviously, already have had a request, and I think have accepted that request, for some standards discussions or at least a presentation or two, and whether that expands or not is to be determined, but we are also going to be wanting to hear from the CCHIT, hopefully, in June, and I am blanking on it, since the -
MS. GREENBERG: The who?
DR. COHN: Certifying Commission on Health Information Technology.
Assuming they are available and willing to present what they are doing at this point, because I think, by that time, hopefully, there will be some things for them to come and talk to us about.
MS. GREENBERG: Would you see that kind of with the status of RFI responses?
DR. COHN: Perhaps. Yes. Yes, I mean, it's - we'll figure out how - where it best fits, but probably with some of the RFI responses.
Now, we had also talked some to Ed Sondik, and we will invite Ed to come back for a little bit more conversation in depth on some of the NCHS stuff, really into both vital systems - biostatistics redesign as well as, one of our favorite topics, which is classification-development issues and status. That will either be June or September, based on our schedule. Now -
MS. GREENBERG: The whole thing with Ed or classification?
DR. COHN: They are sort of two separate items, but they are also - Well, I mean, I think we'll see when they best fit in.
What I would like to do is to make sure, as we sort of move forward - and, once again, this is, I think, something I have heard in all the conversations I have had, we want to make sure that, in our presentations to the full committee - we have presentations, but we really want to have time to discuss the presentations with the presenters, and we obviously want to have things that are discussable in those presentations. So this will be, obviously, something that we'll be working on, both making sure that the time of the presentation works, but, also, sort of looking at the presenter's presentation to make sure that if they have an hour, there is enough time built in for there to be conversation, because I think that is really where the value is for the committee, and where we add value also.
DR. STEINWACHS: Simon, you had also mentioned about the committee getting a report, either, I guess, June or September on the National Healthcare Quality Report and the National Disparities Report.
DR. COHN: Thank you.
DR. STEINWACHS: I think maybe, from the point of view of our two committees, if that could be in June. I don't know whether it is going to fit on the agenda. That would be helpful, both for the population and, I would think, the Quality Workgroup.
MR. HUNGATE: A related comment. We have had ongoing recommendations surrounding the issue of functional status, and it is clearly something that we talked about in our session today, and it is still there.
It seemed to me that in the CMS work on health of seniors that that started to address a data-collection task around health of seniors, functional status in that group. I wonder if that isn't something we ought to hear about sometime.
SPEAKER: It is a huge amount of information.
MR. HUNGATE: There's a lot of information. It was a big project. It is in an area that we have expressed as important and of interest, and I don't know - you know - where that sits and what it has done.
DR. COHN: Well, let's put that down as an agenda item, and let me tell you how - I mean, I think functional status is important, and I think the question is is knowing that this committee, even in my brief tenure, which, of course isn't so brief anymore, have written a number of letters and reports on functional status without anything happening.
There has also been CHI work on functional status, which was sort of left as, Well, we are not sure what functional status is. We are not exactly sure what the business case is, and we need to do a little more work to clarify all that; and, Steve, I may be misstating it, but that is how I sort of -
MS. GREENBERG: Yes, having been on that group, that is the way I would characterize it -
DR. COHN: Well, but it is all pieces of that.
DR. STEINDEL: Simon, I think the best way to put it is the CHI Report left the whole area open.
DR. COHN: Exactly.
MS. GREENBERG: It reached no conclusions.
DR. COHN: Yes, and I guess I am hoping that maybe we can sort of begin to triangulate some of these things, the combination of since CHI is now under FHA - the FHA that we are talking about - that maybe there's ways to leverage, hopefully, what will be renewed work on functional status, and, there, along with what I would describe as what is the use case or business cases of it all, and maybe there are some ways to put that together. Does that make - And I don't know when - That will be either June or September.
MR. HUNGATE: Just try to make sure that we keep it up in the view screen in some actionable way, and I think it is a broad committee - It can be thought of as a populations issue. It can be thought of as a Quality Workgroup, but it keeps bumping up other places, and so I just - I kind of want to find ways to keep it on the agenda in a workable way.
DR. COHN: Sure. Okay. Well, I think we have noted it, and thank you. So -
MR. SCANLON: The only thing is, as you look into this, I don't think you should associate function status with any particular measurement or classification. I think you would be best served by looking at - or survey, for that matter - and looking at what exactly, how people conceptualize it and what are they using it for. Otherwise, you'll have too many - you'll have a lot of data activities there, not functional status as you are thinking of it for - depending on what the use is. It is not one classification. It is not one measure. There are a lot of measures.
MR. HUNGATE: Yes, there are many measures, but - and many, many users, you know? It is the one I use as a good example of chaos management, because what you need in spinal injury is different from what you need in diabetes, in terms of measuring status. So you have to recognize variability in measures.
DR. COHN: Well said.
Any other thoughts? I mean, we are obviously - I mean, we will continue to develop - Marjorie had some others we forget. Please.
MS. GREENBERG: Well, I just wanted to make sure that we are clear on what the action items are for the June meeting, because, then - because we have a lot of subjects here, and, actually, the fewer action items at the June meeting the more we can fit in. So we've got the Populations Report. Do we have any other subcommittees or workgroups bringing forward action items at the June meeting?
MR. HUNGATE: If the Quality Workgroup could achieve a work plan that we thought was worthy of discussion, we would probably try that.
DR. COHN: But that is not for action. That doesn't need to be voted on by the full committee.
There may be a letter from Standards and Security, to be determined -
SPEAKER: Another 18 pages?
DR. COHN: Hopefully, a two-page letter relating to any sort of followup on any of the open standards issues, if anything comes before that.
MR. REYNOLDS: Yes, e-prescribing. Any of the e-prescribing, yes.
DR. COHN: On e-prescribing.
MR. REYNOLDS: If any e-prescribing things come out in our meeting.
MS. GREENBERG: Maybe - but a short letter.
DR. COHN: These are short, yes. I mean, it's -
MS. GREENBERG: Maybe short. Okay.
DR. COHN: Yes. Any other letters? John Paul, I'll ask you, from Privacy and Confidentiality?
MR. HOUSTON: I don't believe there's any other letters, other than this one we have currently going. I think Mark had indicated the next one will be in September.
DR. COHN: Great. Okay. Yes. But we'll be talking as we try to put the agenda together. I think we have come up with some good focuses of discussion, and, once, again, my intent at the full committee is is to make sure that there is adequate time for discussion, as opposed to just for hearing an issue. So we will be looking at the agenda as we sort of move forward to provide that.
Now, I guess, at this point, we are sort of - is there any more - Marjorie, do you have anything else?
MS. GREENBERG: No.
DR. COHN: Okay. Good. Okay. Well, in that case, what I want to do is to thank -
MS. GREENBERG: Oh, wait. There is one more action item, just that I forgot. The annual report of the committee.
DR. COHN: Oh, that's another action item. Okay.
MS. GREENBERG: And possibly the HIPAA Report.
SPEAKER: Well, that is action, probably, in September, but -
MS. GREENBERG: Okay. But the committee's annual report -
DR. COHN: Okay. Well, we are going to be ending up a little bit early. I hope nobody minds too much. (Applause).
I, again, want to welcome the new committee members. I think you have started out very well. We like to see people getting involved quickly, and none of you have been shy. So I want to thank you for that.
SPEAKER: They showed up for the second day.
DR. COHN: They even showed up for the second - (laughter). Yes, I mean, despite all of our words of all the work and all that, you seem to be engaged and willing to be involved. So thank you.
Obviously, we want to thank the work of the departing members, who I don't think any of them are - probably all -
MS. GREENBERG: They departed. (Laughter).
DR. COHN: There's Vickie. There's Vickie. There's Vickie.
Gene looks like he has already departed.
Judy, I, once again, want to thank you for your involvement, service for us as liaison. I wish you a wonderful retirement.
MS. BEREK: Thank you, and I will try to help Don before I'm gone.
DR. STEINWACHS: Okay. Great. Thank you.
DR. COHN: Okay. And, again, thank you for your help.
As I said last night, I mean, you know, we used the term my door is always open, but I am very responsive to emails, voice mails and everything else. So if you have any questions, any suggestions for improvements, I mean, I am really very open to all of that. So -
DR. STEINWACHS: Simon, I thought maybe with the geocoding capability we could get a little thing hooked onto you so that we could track you at all times, so that anytime we feel we need you, we could just bring up on the computer screen where you are in the world.
MR. REYNOLDS: That would be RFID. (Laughter).
DR. COHN: You know, the bad news is with blackberries, I think we actually effectively have gotten that at this point. (Laughter).
Marjorie, do you have a comment?
MS. GREENBERG: If anyone has any preferences for our social in June, let me know. I mean, it will be more informal. We won't - you know - but we do have a little -
DR. COHN: Yes, we do generally try to have dinners out of - after the first day for every meeting. So - and, Marjorie, through her efficient management, has provided us a reserve, a little bit of a kitty, so - which will be useful.
Now, finally, just as, I think, we have talked throughout the days, I mean, obviously, this work, you know, is not done without staff, and we obviously want to thank the staff for their support, Marjorie and Jim, and, obviously, the people that support you, and Maria, Anna Poker - Who else is around here? Everybody -
MS. GREENBERG: Everybody -
DR. COHN: Debbie - really want to -
MS. GREENBERG: Kathryn, Michelle, Julia -
DR. COHN: Yes, exactly. Mary Jo, exactly.
I mean, you know, none of this would happen without them, you know, but, just like us, this is on top of their day job, so we really want to thank them for their contribution and help.
Finally, let me thank Vickie again for her service, and we really - and we'll obviously talk more on the taxi on the way out, but anyway, with that, this meeting is adjourned.
(Whereupon the Full Committee was adjourned
At 1:00 a.m.)