[This Transcript is Unedited]
Room 800
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201
Agenda Item: Call to Order, Welcome and Introductions, Review of Agenda – Dr. Cohn
DR. COHN: Welcome to the first day of two days of meetings of the National Committee on Vital and Health Statistics. The Committee, as you know, is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.
I'm Simon Cohn, a member of the Committee, and Chair of the Subcommittee on Standards & Security. I'm obviously not the normal chair; I'm sitting in for John Lumpkin, who is detained in New Jersey today. He will be coming in and be joining the meeting tomorrow, so never fear, he will be here, just a day late.
I actually do want to apologize to those on the Internet that we are starting a little late. There is rain in Washington today, and as you know, rain in Washington is like snow in some other climates, hence the clogged freeways and, as I understand, also the subways today. But at least we have a quorum at this point.
Obviously, I want to welcome fellow Committee members, HHS staff and others here in person. Also, want to welcome those listening in on the Internet and of course as always remind everyone to speak clearly and into the microphone so that those listening in on the Internet can understand and appreciate our deliberations.
We start with an update from the federal government, from data council, from Jim Scanlon, Maria Friedman, Susan McAndrew. Then we move into a discussion from the NCHAS Board of Scientific Counselors, and then we get an update from David Brailer on national health information technology. We follow that with, I think, a discussion around a population report that is being developed.
And then this afternoon we move into reports – or a presentation on the American Community Survey, and then a letter that we'll be reviewing for action at this meeting. After that, we'll be moving into subcommittee meetings and workgroup meetings for the remainder of the day. Hopefully, there's not anything else that we're missing on all of that. Please let me know during the introductions if there's additional agenda items that we need to be adding to the agenda today.
Now 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 issues coming before us today, would you see – please so publicly indicate during your introduction.
[Introductions]
DR. COHN: Thank you for joining us. Well, now, with that, we'll start with updates from the Department. I think Jim Scanlon, you're on first.
Agenda Item: Update from HHS – Mr. Scanlon
MR. SCANLON: Let me start. Good morning, everyone. Let's see, we last met, I think, in September, and a couple of additional developments have occurred in data policy and health information technology issues, and let me just spend a couple minutes this morning bringing you all up to date.
I'm going to talk about budgets for fiscal year '05 and '06 and then I'm going to talk about some -- what are largely population statistics initiatives here in HHS that we started under the Data Council and then a privacy notice or two as well.
The – and obviously the elephant in the living room – someone said there was an election yesterday!
[Laughter.]
MR. SCANLON: And you all know – the day before yesterday. Well, I voted in it. [Laughs.] So you all know the results of the election and we're – I think all federal agencies are now kind of regrouping and planning their budgets and other initiatives as the smoke is clearing.
So let me first turn to budgets. As you all
know, our fiscal year begins on October 1st, so we're a
month well into the fiscal year '05. We and most other federal agencies are under a continuing resolution pretty much until the end of this month, November, which really means that we're authorized to spend at the level more or less of what we did last year for the same period.
It also means there are, you know, for the most part, no new starts, no major new initiatives, anything like that. The continuing resolution is more or less aimed at continuing the service level of the previous year.
So presumably when Congress reconvenes later this month, we'll either have another continuing resolution or we'll have an actual appropriation, and then I think we'll all have a better sense of where we are for fiscal year '05.
The President's budget for fiscal year '05 actually had a number of very positive developments in health information technology and in data policy. I've told you about them previously; just a quick recap.
The budget includes a $10 million initiative between my office, AHRQ and -- ASPE and AHRQ for standards development and maintenance and so on, and that money was put to very good use this past year. It really was, allowed us to move forward on our Xnorm daily med and a number of very critical other developmental work in standards, and it also supported some of the essential
terminology mapping priorities that the NCVHS recommended, and I think Betsy Humphries will be describing those to you as well. So that really helped us a great deal.
That 10 million is included in the President's '05 budget and at least there seems to be every indication that that would be continued in '05, and Mike Fitzmaurice and I are kind of co-managing that. We're starting to think about what the priorities might be for '05 on the assumption that it would be forthcoming as well.
You'll remember as well in the AHRQ budget there was $50 million initiative for planning and demonstration grants to improve patient safety through health information technology in hospitals and ambulatory practices and so on. Those grant awards have already been awarded for the previous fiscal year. That is included in the President's '05 budget as well, so we're hoping that that will ultimately be enacted into the budget for '05.
In addition, you'll remember that in the Departmental level budget, the Office of the Secretary, the President's budget proposed a $50 million initiative for grants involving actual data exchange networks. This is again for '05. We don't have that funding yet.
The focus here would be on data exchange and
interoperability. It looks like Congress is – I think
it's been reduced to about 25 million at least in some of
the deliberations in Congress, so that may be somewhat
less, but hopefully we're getting – we're hoping that we'll at least have some funding there as well. But again, we won't really know what the full budget picture looks like for fiscal year '05 until for at least another month and possibly longer.
On the population statistics side, as I've indicated in the past, the President's budget contains some very good news and some very good initiatives, and primary of which was a $25 million increase for the National Center for Health Statistics. The purpose here was to help maintain and transform the core statistical systems at NCHS. They're very familiar to you all, everything from vital statistics to the health interview survey, to NHAIS on the health care surveys.
And there was some money as well slotted for methodological research. This was our highest priority in the data area for that budget, and again, we're hoping that that will be acted upon favorably within the months ahead.
Not knowing exactly what the budget picture will be, I think we're basically continuing at the same level, but just postponing major developments until – and major decisions until we get a better picture. Obviously, if that doesn't materialize, we'll be in a more complicated situation with respect to the surveys.
For planning for the '06 budget, the – we're really in a very preliminary stage. The Data Council has reviewed all of the – sort of the current portfolio of statistics and data activities and the proposals for enhancements that agencies identified in their very early preliminary budget thinking, but it really has not progressed beyond that stage, and I think now the focus on the '06 budget will take on more energy and move along much quicker.
So that's kind of where we are with the budget situation.
Let me turn a couple – to a couple of statistical and population-based data initiatives that the Department through the Data Council has been focusing on in – over the past few months, and here we're hoping to make some enhancements and some improvements.
In the first area, we began in September to look at what was our current capacity for prescription drug data in our major surveys and administrative data systems. This was associated with the Medicare Modernization Act prescription drug benefit program but more broadly as well, and we at a September 8th Data Council meeting brought together all of the agencies across HHS as well as some of our policy research agencies on the Hill and in other Departments and we looked at what the current capacity was.
There are only a few surveys that actually get much detail on prescription drug information, prices and so on, but we looked at ways that we could work together. We had some follow-up discussions about how – where the major gaps were and how we could work together to address some of those gaps in our major surveys, and I think in the months ahead we're putting together a set of proposals for improving that information and we'll be working on that in the months ahead.
In September, under the Data Council auspices, we convened HHS and other federal agencies to look at national health insurance data and data on the uninsured and how we measure it and gaps in that area and ways we could work together.
You all know that every season there are at least three estimates for how many uninsured there are in the U.S. In a way, their – the surveys all answer somewhat different questions, but it is somewhat perplexing sometimes to sort it all out, and we're looking at how we can make better sense of that, how we can some improvements, and how – there's a fair amount of imputation for the researchers around the table done in these areas and how this all works together.
So we will be, in the months ahead – again, we have some follow-up activities. We're looking at how we can address some of the gaps there, how we can have a better framework for what these various estimates mean, and how we can move forward maybe on modeling and some analytic and methodological work as well.
In a corollary, in October, in – Dr. Cohn has been participating in our Data Council meetings, so he's aware of these developments as well – on October 13th, I think, we looked at – we followed that discussion to look at health insurance information and access and related health care data at the state and local level.
And here we looked again at what the current surveys and other data sources were for providing that kind of information, what were the limitations, what were the strong points, what were the gaps, and is there a way to proceed, and I have to say there we – there are clearly more challenges in the data area for states and local areas than on the national area. And there was a point reached at which even the federal role is questioned about how far down in terms of estimates do you go here. And we do have some surveys, the current population survey and others, that actually provide some state data, but that's clearly more resource intensive. But we'll be looking at ways we can address some of those gaps as well.
And then finally, in a couple of related areas, we began a project late in the fiscal year to look at the extent to which our surveys and other statistical systems are using data standards such as the ones we've talked about here, not so much message format standards as much as terminology standards, as well as statistical standards for those researchers around the table. There's a whole set of standards for how you do things – statistical practice, classifications and so on. It's the extent to which our surveys are using those and what are the opportunities if they're not using them for moving forward.
And then, finally, on the privacy front, the – we are – we have open at the moment a recruitment for John Fanning, who retired a couple months ago, so we're hoping to get some good candidates and we're hoping to hire someone to cover the privacy policy area fairly soon. The position is open and it's described on our hhs.gov/careers website, and I know some of you have already shared that announcement with some candidates and we're very appreciative.
DR. COHN: Any questions? Vickie?
DR. MAYS: A couple questions. One, there was some discussion about a geocoding project that I think was underway; if you could update us on that. And the other, in terms – I don't know whether or not this is something to
ask of you or whether or not this is something to go directly to NCHS, but in terms of, if they get the budget augmentation, there is this discussion about them – some of the money for methodological work, and I'm wondering if there – if it was – if in the request, whether or not you have specific things they were asked to do or if that's something that's up for discussion.
MR. SCANLON: Let me start with the first, Vickie. The geocoding project, we're running that out of – under the Data Council auspices. Dale Hitchcock is our project officer.
And I think Dale told me yesterday that it was pretty much almost finished, and we were proposing to brief the Data Council, and I think we'd be happy to brief the NCVHS or the populations subcommittee, however you'd like to do that, at any time in the couple months ahead.
That project actually worked very well. It's a way of kind of integrating through – for geographic kind of information all of the holdings – this is primarily in the environmental area where there are physical – where literally you have a – you have geographic coordinates, you can literally have GPS coordinates, other ways of describing where something is located. But there's – that's sort of the most detail level. Then there are zip codes, there are block groups, there are counties, cities
and so on, so you can aggregate a – but it's actually a nice way of approaching standards for collecting and displaying geographic level data.
On the methodology program, Jack, I'm remembering that our request was fairly broad; we didn't describe any particular methodology projects. I think we'd clearly be open to – I know the full committee is in the process of pulling together research and methodology ideas, so I think – I won't speak for Jack, but I think we'd probably be interested in your ideas.
MR. ANDERSON: Yes, Jim is correct. The request in general was to shore up the Center's programs, not relate to starting new activities. If we don't get a sizable increase, we'll probably actually have to actually cut out one of the major data systems.
So we've been shoring those up over the past several years, trying to keep them going. And one of the things that has suffered has been the methodological research program as we've taken money – have not put money into that, ‘cause we put every dime we've had into actually trying to keep the data collections going.
But Jim's actually absolutely right. We would hope to use some of that money for methodological research if we get it, and we were not specific in the request as to specifically where it would go, so we are quite open as to input from this group and others as to what might be the best use of that.
DR. COHN: Okay. Jeff, then we'll all move onto the next presentations. Jeff?
MR. BLAIR: Jim, you referred to the funding that's available for data exchange networks –
MR. SCANLON: Right.
MR. BLAIR: -- and could you help me sort some things out?
MR. SCANLON: Sure.
MR. BLAIR: As I started to look at a number of the demonstration projects and funding projects and initiatives in the federal government, I was trying to pull them together, and I kind of started with the idea of the local health information infrastructures and now where I'm not sure it's the same thing, but you were referring to the regional health information organizations now.
MR. SCANLON: Right.
MR. BLAIR: There's the data exchange networks, there's telemedicine, but then there's a whole number of other initiatives that seem to be considered within the domain of regional health information organizations, including e-prescribing, possibly the docket program. Could you help me out? Are data exchange networks the same as RHIOs? Are they subsets of it? How does this all fit together?
MR. SCANLON: You're asking for a unified theory of national health information technology –
[Laughter.]
MR. SCANLON: -- and we actually hired someone to – [laughs] – David Brailer will be with us later today, and I think David's working on a strategy. He's working with the agencies on a strategy for how to sort this all out.
Yes, there are some – all of the things you've mentioned, Jeff, they're very – those are pieces of the overall framework. I'm not sure the terminology has changed or is changing, but I think – I will defer to David when he gets here later. He'll bring you up to date on where we are with moving forward on the whole health information technology including the data exchange networks and the infrastructure, the backbone, and things like that.
The e-prescribing is a somewhat – I mean, obviously it's all related, but e-prescribing, as you'll learn from Karen and others, that's obviously on a faster track and a more direct track in support of the Medicare Modernization Act prescription drug benefit which begins in January '06, but I think – so that's somewhat – that's moving ahead, and – but it's being envisioned in a way that would fit in with all of the other –
MR. BLAIR: That would work – yes, exactly.
MR. SCANLON: -- and it could be --
MR. BLAIR: In other words, someone that has a regional e-prescribing network might be – might qualify as an RHIO funding –
MR. SCANLON: Well, we're not even – the Medicare part is being considered without regard to data, so –
MR. BLAIR: Yes.
DR. COHN: Okay. Well, with that – and Jim, let us know when you have the relative – the unified theory together – I would like to hear that.
[Laughter.]
DR. COHN: Okay. I think we'll move on, in the interests of time. Karen Trudel, you're presenting for CMS on HIPAA and a variety of other issues.
Agenda item: CHI Update – Ms. Trudel
MS. TRUDEL: Right. Good morning. Just to provide a little bit of context, I'll go over some of the implementation dates, compliance dates that are coming up shortly; I'll talk a little bit about regulations that are in process, the Medicare compliance rates for claims, et cetera; talk a little bit about complaints and also on e-prescribing and CHI.
With respect to the compliance dates that are coming up within the next few years based on regulations that are already published, we have the security compliance date coming up in April of 2005 which is for most plans and providers, 2006 for small health plans, and the national provider identifier compliance date in May, 2007, and again, 2008 for small health plans.
We have the claims attachment standards proposed rule, which is admittedly moving somewhat slowly, scheduled for an early 2005 publication; the national health plan identifier around spring, and modifications to the transactions and code sets, the second round of modifications this summer. And I'll talk a little bit about the e-prescribing rule in a moment.
In terms of Medicare's own compliance experience, we're now receiving more than 98 percent of our claims in a totally compliant format, and at this point, 62 percent of the receivers are in production with HIPAA compliant 835 Remittance Advice, which is a great deal of progress. We're very pleased with that.
In terms of complaints, we have received a total of – and I know Sue is going to scoff when I say this; she'll definitely trump me by orders by magnitude – 247 in total, and of those, 110 are open and under investigation. Seventy-five percent of the complaints that we're receiving are against private sector entities as opposed to governmental organizations that qualify as covered entities under HIPAA.
The complaints that we're receiving generally allege that a compliant transaction was rejected, a noncompliant transaction was sent, that there was a companion guide that violated the implementation guides – in other words, they did not agree; that appropriate code sets were being rejected, or that there were disputes between trading partners, and for the most part, those had to do with excessive telecommunications fees.
We're currently monitoring for corrective action plans, but we're finding that our parties resolved most of their complaints before we reached the point of corrective action plans.
Just in terms of outreach and the kinds of inquiries that we're receiving, it's kind of interesting to note that our hotline is now receiving about 1200 calls a month. Contrast that to about 5,000 in the August to October period last year and 15,000 or so in the October period the year before because of all the requests for exceptions from the folks from ASCA.
Let me talk a little bit about electronic prescribing because I know the Subcommittee on Standards & Security members and the full Committee have labored long and hard over the summer to come up with the recommendations for the Secretary.
We are indeed pursuing, as both the Secretary and Dr. McClellan have publicly stated, a proposed rule that would propose the set of foundation standards in keeping with the NCVHS recommendations. There would be a hope of implementing those standards in January of 2006 as the Part D plan, actually going to – into operation, and the regulation is moving with a considerable amount of speed. You know, I do believe we will be seeing it in the relatively near future.
We also have a contract where we have someone gathering information on the characteristics of current e-prescribing implementation and we'll be using that language – that information to construct a strategy for the pilots that will take place in 2006.
Just a short word on CHI. As I think I've mentioned before, it actually has two -- has three focus areas. We're working on implementing the standards that we've already adopted, maintaining those standards, and focusing on needs for new standards in areas where there are critical business needs in the federal sector. We're working with Federal Health Architecture to coordinate our activities and our resources.
And I think that's about all I have to report, so I'd be happy to take questions.
DR. COHN: Questions? Michael?
DR. FITZMAURICE: Karen, in your commentary,
you said that 98 percent of claims were totally compliant. I think that's a remarkable achievement. It means they're compliant with the HIPAA standard, right?
MS. TRUDEL: Yes.
DR. FITZMAURICE: Remarkable. Any complaints from payors that – I'm sorry; from – I guess, from payors that providers are having a hard time getting the standards up to the payors? I mean, what I'm hearing sometimes is that the health plans and the payors are ready to go and that they're having a hard time getting the providers to get to that place and that in between there are people who are just turning it around and putting in what's necessary to get the claim paid. I haven't heard that with the Medicare program, but I've heard that with other programs. It seems like the Medicare program has made remarkable progress and that we can expect similar kinds of progress in the private sector. Is that your opinion, too?
MS. TRUDEL: What I have heard, just anecdotally, is that the primary focus in many cases in terms of testing and implementation was placed on Medicare and that once Medicare implementation was accomplished, especially in terms of large vendors, clearinghouses et cetera, then the focus went to Medicaid, Blue Cross Blue Shield et cetera.
So I would say that what I'm hearing, and I'm
sure Harry can attest to this as well, is that other plans,
Blue Cross Blue Shield plans, et cetera, are not experiencing levels that are as high as Medicare's but that their numbers are steadily going in the right direction.
MR. REYNOLDS: Yes, I would concur with that. We're running right in – right now at 66 percent, but we have all of our trading partners that actually would send them to us are in production. It's just that they're having to go around provider at a time and now that they've got Medicare done, and then they're looking at Medicaid, then they start looking at the commercial business.
So it's – you got a little bit of a pecking order, obviously. Medicare was the big dog in this fight –
[Laughter.]
MR. REYNOLDS: -- and so I think it's key, but it also – I'm also seeing similar increases in the other transactions. Our membership inquiries have grown dramatically. Our claims inquiries are growing.
So it's starting to – as vendors really click in, they're bringing large numbers of providers to the table, so you may be waiting for providers, but as that vendor actually gets those providers ready, you'll get a chunk of ‘em.
So one – we have one clearinghouse that sent us 20,000 membership inquiries. So as you pick each of these
pieces up, your volumes start jumping dramatically. So
we're comfortable we'll be approaching Karen's number because we actually have 93 percent of all the providers signed up to be in production; it's just how fast they come on now that they've gotten Medicare out of the way.
PARTICIPANT: I would concur.
DR. FITZMAURICE: I have heard, too, that the thing that people like most is the remittance advice, that they're getting more accurate remittance advices and it's broken down more finely. And that seems to be a benefit of HIPAA standards that they wanted, they expected, and they're beginning to get. They do like that.
MS. TRUDEL: That's excellent, and I would also point out that prior to HIPAA there was no requirement that the remittance advice balance, and obviously if it doesn't balance, you can't use it to post very effectively. So I think that's another big plus.
DR. COHN: Good point, Karen. Thank you. Hear one final question and then we'll – Russ, did you have a – and then we'll move on to the last –
MR. LOCALIO: This is Russ Localio. When we met in September, there was some discussion, and you're going to see Steve – oh, there's Steve; okay, Steve's here, okay – good. Back me up, Steve!]
[Laughter.]
MR. LOCALIO: There was some discussion, and I
think I voiced some concern, that although we have pilot objects in prescribing coming up in now a matter of 14 months, I was not aware that there was anywhere in the federal government yet available a list of all of the drugs that might be prescribed.
PARTICIPANT: All of the – drugs, did you say? Drugs?
MR. LOCALIO: Yes, prescription drugs that might be prescribed. It would have the drug in NDC code and the drug class.
Now, the FDA list, to the best of my knowledge, is incomplete, and those of us who work in research buy databases from the pharmaceutical industry ‘cause it's the only place where you can get complete lists. Where the – my – am I totally out of touch, or do we have something in place, or is there going to be a rule coming out that says, As of today, we have the database ready and this is what -- these are the possible drugs that can prescribed? How is it going to be maintained, on a daily basis? Or are my questions out of turn?
DR. COHN: Well, maybe I'll start out, and then Karen? Yes, Russ, actually I think you actually passed a letter in September which I know you voted in favor of that addressed some of these issues, and I think it's actually been a full committee observation that the NDC files are in a – somewhat of a state of disrepair, which is what I think you're observing.
MR. LOCALIO: I just wanted to know –
DR. COHN: What's happening.
MR. LOCALIO: -- do we have any progress as the clock ticks?
DR. COHN: Yes, Mike, did you want to answer?
MR. LOCALIO: I'm very concerned.
DR. COHN: Yes. Mike, did you want to answer that one?
DR. FITZMAURICE: Well, as Jim mentioned earlier, he and I are in charge of a $10 million investment in data standards. It's the first time the government's ever had this kind of initiative. And a good part of that initiative has gone to reduce adverse drug events, and in order to do that, you need to know what the drugs are.
Seventy percent of that money went to FDA and the National Library of Medicine. And one of the products to come out of that is to be an electronic drug listing and then followed by a listing of all the products that FDA approves. That has been started. I met with FDA yesterday, and that is ongoing. By ongoing I mean they are starting the system and then throughout the course of '05 they will begin filling in the system. We think some of these things are critical to – for e-prescribing, and so it was imparting a sense of urgency -- and to find out that they were making good progress that we met yesterday.
MR. LOCALIO: Thank you.
DR. COHN: Great. That's a more reasonable answer in my – yes.
MR. LOCALIO: Thank you.
DR. COHN: Well, actually, Russ, you should keep asking that question probably every quarter just to see what happens, ‘cause we've been buggin' ‘em about this one for years.
MR. LOCALIO: What I want to do is when it's online, you should get a demo and then have a party.
[Laughter.]
PARTICIPANT: It will be a big development –
DR. COHN: Yes.
DR. FITZMAURICE: Well, part of it is that they are to take that information and give it to the National Library of Medicine. It's also posted or referred to on the daily med website, so there's coordination involved as well as producing it.
DR. COHN: Yes. Steve, do you have a comment? And then we'll move on to the next one.
DR. STEINDEL: Yes, just as a quick comment in support of what my other federal colleagues have said.
There's been progress being made; a lot of it is behind the
scenes, but it is moving forward.
But I think a good public example of the progress is at the Med Info meeting in September, the National Library of Medicine announced their first version of a browser for RX-Norm which does – it doesn't integrate the NDC codes yet but it does integrate the prescribed – prescribable drugs, and they know clearly that this is a very preliminary version.
DR. COHN: Okay?
DR. STEINDEL: At least they can demonstrate it; that's good.
DR. COHN: That's good. Okay. Thank you. Karen, thank you very much for the update.
Our last Department presentation is from Sue McAndrew. Thank you for joining us.
Agenda item: Privacy Rule Compliance Update – Ms. McAndrew
MS. McANDREW: Sorry I was late, but I will keep this brief.
The complaint status is a little preliminary at this point for the complaints through October; usually we allow the regions up to six days at the end of the month to firm up their numbers. So when – these are a little preliminary.
But as of now, we're showing a total received of 9,277 complaints. We have a – we are maintaining a closure rate of 60 percent. There's been no major shift in the nature of the complaints; it is still predominantly impermissible uses and disclosures followed by concerns about safeguards, access, minimum necessary, and authorization.
There's been no shift in terms of the nature of the entities against human complaints. Our main – it still is predominantly private practice physician offices, general hospitals, outpatient services, pharmacies and group health plans.
We are – we were able to compare the volume compared to October of last year, and we are running actually a little below the total number of cases that were received in October, so whether this is just a matter of preliminary numbers or at least to stabilization, which we would gratefully accept, it is not continuing to trend upward, which is hopeful ‘cause we may get a chance to catch up and close the more cases.
The closure rate was significantly up from last year, and the – among the closures, we are typically running – about 25 percent of the closures are for jurisdictional reasons. The rest are either nonjurisdictional or other closure bases.
In terms of policy emphasis, we are continuing to work on a number of materials for the website. We have been working with NIH to get out another major component of their research fact sheets and FAQs in terms of how this one will address the privacy rule in relation to human services research.
We are also continuing to work hard and are getting close to technical assistance materials directed toward small providers and are working on FAQs to address a lot of questions that have been accumulating in the litigation area – how covered entities can use and disclose information when they're involved in litigation or have been subpoenaed for their records in relation to somebody else's litigation process.
Other than that, we are continuing to, as – both because of the large volume of complaints that we get in the safeguard areas and with the moving toward the security rule coming on line and the security complaints that CMS will be handling, we have stepped up our efforts to coordinate with Karen's staff to work out how we and CMS will be moving forward on complaints that overlap privacy and security and how to sort out those that are strictly security complaints.
And we are also getting – continuing to push through clearances on the enforcement rule which will take the interim procedural enforcement regulations and expand them to encompass all aspects of the security – I'm sorry;
the enforcement process, and this will be a regulation – a set of enforcement rules that will be common both to OCR and to CMS.
And that's – and in the meantime, we're doing whatever needs to be done on the – [laughs] – preparing for e-prescribing and the other onslaught of technology initiatives.
DR. COHN: A good summation. Let me ask one question, and I know Mike has another question, which is: You've mentioned the enforcement role –
MS. McANDREW: Yes.
DR. COHN: Do you have a view of when the proposed rule might come out on that?
MS. McANDREW: I have ended prognostications on – [laughs] – when that is out. It is getting close; we are hopeful. Hopefully, by the end of the year.
DR. COHN: Oh, okay. Thank you. Mike?
DR. FITZMAURICE: I will say that recently I was able to review – of a health services research and the privacy rule. What I'm seeing in the things coming out is there is a consistency across the guidances and a further delineation of where the lines might be drawn or where lines can't be drawn, and so I think the public cannot wait to get, with good bated breath, the – these guidances, because they are helpful and they help in making additional decisions beyond just what you would read in the privacy rule. They don't change the law, but they give you guidance in areas where you really have questions.
DR. COHN: So, thank you, OCR.
MS. McANDREW: Well, thank you.
DR. COHN: And then Jeff?
MR. HOUSTON: Well, I guess the last time, or two times ago, when we met, we talked about getting some type of detailed statistics. I know I've given you some of my thoughts on that. How close are we to getting something together or having more detailed statistics available?
MS. McANDREW: We have done some preliminary runs off of our database to try to refine and correlate some of the statistics. I think we are still – we're having two sets of problems. One, there are other time demands on our system's people, so we get a small slice of their attention.
And the material, the preliminary runs, have not been very user friendly. And I – so the first couple of times we looked at these, we kind of scratched our head and need to do some further investigation to either do some clean-up of the data which may be making it look like – or work – get more of the time of the technicians that are running the system, to say, Can't you refine these correlations because they're not adding to any information –
MR. HOUSTON: Now this is – sort of as a member of the privacy subcommittee, I mean, I'm personally very
interested in knowing where – what the trends are because I think that's going to help shape where we go with some of our hearings and things we want to try to focus on, I think, so, you know, the sooner the better from my perspective, and I understand the challenges, but I think it's really important to try to get to some understanding where those debate issues are still.
DR. COHN: Okay. Jeff, and then Richard Harding.
MR. BLAIR: The privacy regs were put in place in order to build public confidence and trust, that we move health care into the information age, the public can trust that their personal health care information will be kept private, confidential and secure.
While your briefings to us are relevant in terms of the administrative accounting of people who are complaining within the system, I am frustrated and concerned that we've lost sight of the basic goal and we're not keeping track of whether that goal is being achieved and the consequences of not achieving that goal could be extremely severe.
Has there been any survey of public understanding, awareness, of the privacy regs and whether
or not the privacy regs have moved the ball forward to having the public trust health care information in electronic form. If not, it is a wonderful vehicle to build that trust, but so far, I don't see us using this regulation to do the job it was intended to do, and that is, to build trust in the public. Has there been any attempt to find out if the public understands this and what their attitudes are?
MS. McANDREW: I think to the extent the – I think both the complaint system itself taps into many of the attitudes of the public to the rules, we also have and continue to get and handle a lot of correspondence from the public, although I must say I don't – I think the volume of that is significantly down from when the rule initially went into effect. But we don't – and we have just recently put out some consumer oriented fact sheets and representations – summaries of the individual rights that are given under the rule so that there will be some – I mean, we have clearly heard that the notice process was too – became too technical and the documents were far too lengthy to be meaningful to anyone other than someone who was already privacy oriented.
So it is – we are hopeful that these consumer oriented pieces will go far to explain the rule in terms that the average consumer can better understand. In terms of actual formal surveys on consumer attitudes, no, we have not engaged in any of that.
MR. BLAIR: Well, let – you know, let me just indicate that I feel like if you don't have that information, we could be winning the battle but losing the war. So I would just encourage you.
DR. COHN: Okay – Jeff, you have a – I would suggest that you might reconsider joining the privacy subcommittee, based on that question.
We have time for one more question, and I think, Richard, you're on for that. And then we need to move actually – I see David Brailer here and we need to move into his session. We'll do the Scientific Counselors session after the break at that point and just -- so, Richard?
DR. HARDING: A typical question – Richard Harding, a member of the Committee -- that is asked of me all the time, one is, what percentage of the complaints have merited a referral to the Inspector General at this point? And the other, have there been any referrals for omissions as opposed to commissions in the complaints? That is, someone who didn't do all the things they were supposed to do as opposed to voluntarily not doing things or something like that.
MS. McANDREW: Hmm –
DR. HARDING: Those are questions that come from general doctors a great deal to me when they find out that I'm blessed to be on this Committee, but –
[Laughter.]
MS. McANDREW: One – no, we don't make referrals to the Inspector General.
DR. HARDING: Pardon me, the –
MS. McANDREW: Did you mean DOJ?
DR. HARDING: Yes, yes, pardon me.
MS. McANDREW: We have referred I think it's a little over now 140 cases to the Department of Justice, so that's whatever percentage of 9,000 –
DR. HARDING: So a little over 1 percent of the complaints, okay.
MS. McANDREW: -- and in terms of – I mean, it is possible within the body of the complaints that if the – if an entity has failed to do something that they were obligated to do, that can give rise to a complaint as much as someone who has actively violated, but by and large, I would imagine that if it is simply a failure to have done something – if you've forgotten to put your policy in writing – that those are fairly easily addressed through voluntary compliance, and so in all of those cases, we would look to voluntary compliance before taking any kind of –
DR. HARDING: And then finally, when will the health research guidance be available that was mentioned?
MS. McANDREW: The health research guidance? Once – it is still in the – going through Departmental clearances, but once it is done, it will be on the NIH privacy website which is – and there will be a link to that on the privacy website.
DR. HARDING: So that's the next few months or –
MS. McANDREW: I would expect –
DR. HARDING: -- a year from now?
MS. McANDREW: -- it should clear this month.
DR. HARDING: This month? Wonderful. Thank you.
DR. COHN: Okay, thank you. Okay. Well, thank you all very much. I think on the basis of this, maybe next session we'll make sure we have a little more time for the Department updates, so we'll talk about that with John.
With that, let's change, and David, welcome. For those on the Internet, our next session is with David Brailer, who is the National Health Information Technology coordinator. David, thank you very much for joining us. I'm looking forward to hearing about updates and new initiatives that you have underway.
Okay?
Agenda Item: Current Initiatives in National Health Information Technology – Dr. Brailer
DR. BRAILER: Thanks, Simon; thank you all for taking time to hear about what we're doing on this rainy day, for those of you on the Internet.
We have been busy and have made good progress, and I thought what I would do would be tell you just some of the activities that are underway and some of the things that have, or are, coming to fruition, and I'll be brief and I'll be happy to address comments or questions.
As you know, we long ago now, in July, released a strategic framework and laid out four goals, and one of the first things that we did was organize the activities of both our group and the agencies that we're working with along the lines of those strategic lines so that we could all take a task basis and make sure that we were able to keep focused on specific goals. And let me just review some of these, and I'll talk about some more cross-cutting issues.
The first is on informing clinical practice. And as you know, then, and when I gave the update here before, we were concerned particularly about the risks that were inherent in the HER purchasing decision on the part of small clinician offices in particular and endemically throughout the industry and felt like there were three tasks that needed to be thought through and implemented, not necessarily by government or only by government.
The first was developing product certification that allowed a minimum floor to be placed on what kinds of product features were deemed adequate for an EHR to be used. Secondly was mechanisms that reduced purchasing finance risk. And third were mechanisms that reduced implementation risk.
And I'm happy to say that since that time, the Certification Commission for Health Information Technology, CCHIT, has been formed. Mark Leavitt, who is a name you know as a well-known entrepreneur in electronic health records, now an officer of HMISS, is acting as the Chair of the Commission that has 14 Commissioners that are drawn from physician groups – purchasers, payors, technology companies, other industry associations. They've now had their second public meeting; the third is scheduled for just within a month.
And the – this group, I think, has made remarkable progress towards forming four work groups to begin developing both the criteria and the mechanisms for application. Those work groups are Functionality, who'll be looking at what features and user functions should be present, how would they be assessed; Interoperability, which is not just standards but the other components for patient controlled information exchange; Security and Reliability, which is the whole life cycle of protection; and then an Inspection Process – there's a work group only on the process, about how this would work, what the issues would be, et cetera.
So there is a public nomination process underway for these work groups, and I think they've publicly announced this, and we've been supportive of that, and I'm encouraged that the Certification Commission is moving forward. I think it's going to do something important. We are still in the mode of watching it. We haven't formally related to this group, although my office has designed two ex officio government employees to sit with the group not only for guidance but for input for us.
But we're also exploring mechanisms by which, when this group crosses the line of delivering some of the key outputs that it will, how we'll formally relate to it.
We're still making progress, although it's a little bit behind the scenes, on purchasing risk reduction. As you know, there's a group that's been formed called the “PEHRC,” Physicians HER Collaborative. It's still exploring mechanisms by which it will relate to – it will develop some risk reduction strategies.
There's also an entity that's the National Purchasers Alliance that the Office of Personnel Management and CMS are involved in that are looking at financing schemes, particularly regional financing, the idea being if a Tennessee, for example, since I'm going there tomorrow, will develop a regional project, how can the regional payors synchronize their support of HIT adoption on the part of providers? This seems to be an issue in terms of how the regions operate.
And then in the implementation risk reduction area, I think this is a topic where many of you know there's been a lot of discussion about how to bring resources to the table for that. And this is very linked in with what we're doing with the regional organizations, and I'll come to that in just a second.
So we're making good progress on informing clinical practice and I think that there'll be a variety of things happening over the course of the next several months.
Goal Two is interconnecting clinicians, and central to this is formation of the regional health information organization. I know many of you know already that AHRQ released a series of contracts to state entities and to other regional entities that are, if you'll pardon the twisted phrase, proto-RHIOs. They're regional health information organizations in formation. I say that because we're still working through a process of what it is that the regional organizations need to do or be, but we obviously don't want to hold up the march of progress.
So one of the great urgencies now is: What are the criteria that would establish a regional health information organization? And what benefits does being a regional health information organization convey upon the participants that they individually or loosely collaboratively couldn't gain themselves?
And so we formed a variety of internal work groups that are looking at how the regional organization relates to Stark, to antitrust issues, to tax issues, to a long variety of issues, to determine if there's any standing that can be given to them and if so, what criteria need to be – conditions precedent in the RHIO to be able to accomplish that. We have nothing that's been announced. It's still a very detailed exploration of simply what the statute says and what other interpretations have said, but it's our goal to be able to lay out very quickly at least a blueprint or what the governing rules around RHIO should be in time for the next round of grants which – and contracts which will be announced in March or April, I would presume, and, oh, sometime before the end of the FY '05 fiscal year.
So that is an urgent activity. There've been a lot of discussions on this topic and there's still more to be done, but we have been impressed by the level of activity here in the private sector. The number of organizations that are forming regional organizations are in excess of any federal monies that are flowing, and we want to make sure that we give guidance so that there's not risk posed to these organizations by some future set of criteria or other guidelines that could cause reengineering and this slows down this movement. On the other hand, we don't want to see the movement kind of spin off and become a series of semi-unrelated regional entities.
The other part of this is the National Health Information Network, which is the key components of – that allow interoperability to occur. And as you know, we – our first step in this is the forthcoming RFI, and this is imminent; I think this has cleared all the organs and is waiting for the cue to go out into the Federal Register.
And the RFI is intended to do two things. First, ask questions so it can have facts on the record about what are some of the technical needs, what are some of the technical gaps, what are some of the economic, cultural, professional, legal issues that would be encountered in the development of a set of tools that can be available to allow information to be shared widely.
And this RFI, I think, is the first of a multi-step process of understanding how this can be billed, what role government will play, if any, in this, and how it is that we can make this a treasure and public asset for achieving the goals that have been laid out here with health information.
Clearly, this is near and dear to the hearts of NCVHS, and so I hope that as the RFI comes out, you will get on the record various testimony or comments that can supplement what we get on a one-up basis and we'll be able to share some of that discussion because we're looking at a
variety of scenarios that could open this, these facts, or inform, and I think one of the real judgment calls can be what are the next steps towards moving this agenda forward, and I think it will be a complex set of activities.
So that's interconnecting clinicians.
In terms of the personalizing care goal, we have continued our efforts to evaluate mechanisms for expanding and accelerating the release of personal health records to consumers, and I've been impressed by the number of different organizations and entities who have interests, support, capacity for this, and very much see this as a goal that is – in many ways is moving forward, and we're – the role we're playing is frankly more of an observer.
As this was happening, we have not developed a specific strategy of formulation in that to advance what's happening although I think we've learned a lot about what opportunities there are for making sure that personal health records are themselves interoperable, that they are truly person centric, that they need a standard of being usable by consumers, and that they can insure that they gain public trust as well, and we're looking at that.
One of the elements of that is the issue that this strategic framework raises, which is privacy and confidentiality. And I speak about this not in the HIPAA sense but in the sense of the public trust and concern and
the technological issues around authentication and authorization, and so we formed an internal working group that is discussing kind of where we are with this, but we very much welcome the input that I know will be coming from the privacy work group at NCVHS because it's our sense that there's a social agenda contained in this that needs to be well defined as we move forward with interoperability, and so we want to make sure that we understand the issues that that raises.
We're still involved with efforts to streamline quality metrics. As you know, there's been a burgeoning discussion about how to unify these, that our strategic framework was one of many comments on that question, and that's gained some traction and we're still supporting it and watching that along with CMS and some of the other agencies.
In terms of population health, we are at work developing white papers in collaboration with AHRQ, AMIA and HEMS around how structured clinical decision support will work, how knowledge bases can be created, parsed out, made available, integrated in with electronic health records et cetera.
This is a highly complex problem not just technically but in terms of knowledge engineering but also one that's necessary if we really want to have the goal of – that has been laid out both by us and NIH of closing that adoption gap of what is know versus what is in practice or the – you know, the gaps that you know well from Beth McGlynn and others about what share of physicians follow available evidence. Ultimately, this becomes an exercise of how to make the right thing to do the easy thing to do, and that means, how do we engineer knowledge distribution into both the networks that we're building and electronic health records? The starting point of that is even envisioning how this could work, with scenarios with the – even easily.
So this is underway, and I expect something to come from that in the early spring as we understand what is even possible here, what other industries have done, and what some of the early demonstration projects that are happening in the private sector teach us about the broader question.
We're also involved with a variety of efforts with other agencies, NIH and the National Cancer Institute, looking at population health improvement topics with FDA, with the Department of Homeland Security, CDC, et cetera. There are a variety of discussions underway about how it is we can take the appropriate next steps along – according to the population health goal.
So those are a quick update on where we are on a goal basis.
In a cross-cutting sense, there have been a couple of things I'll just discuss. And one of those is that since we met last, Federal Health Architecture has been fully integrated into our office, and we see enormous potential in terms of federal alignment from this process. Federal Health Architecture is part of the eGov health line of business of management techniques in the federal government and CHI, as you know, has become an integral part, according to eGov and Federal Health Architecture, and we really want to take these to the next level and build on their very promising paths. So that is underway.
The Federal Health Architecture has the following work groups: Interoperability, Electronic Health Record, Public Health Surveillance, and also, showing the cross-cutting nature of it, Food Safety. There are other work groups that are being contemplated, including some that are components of our strategic framework as well as others that are, again, part of the broader health line of business initiatives in the government.
Also, some of you might have seen a very brief announcement that the OMB scorecards that get passed back to the President's management agenda to all of the agencies in the federal government including language that asked for reporting on agency plans to conform to the strategic
framework and for an analysis of where there are variances or gaps with respect to that framework. I think that, plus some of the pass back language that is being discussed, is very promising in terms of operationalizing this framework into a real budget instrument, a mechanism for causing discussion about where we see duplication, where we see opportunities, where there are synergies that can be exploited that haven't come to rest – or haven't been identified to us yet. So that's moving forward.
Also, we are moving forward with the Health Information Technology Leadership Panel. Those of you who have followed this know that this is a group of executives who are not of the health care industry; they are mainline industry or financial companies who are – we're asking to give us their expertise on whether or not health care as an industry deploying widespread information use would be expected to follow the same experience of substantial productivity improvements that their industries did. And this group is coming together and will be giving us their insight as has happened in some other countries.
And we're still involved in our support of the President's 2006 budget analysis that's still underway in the government.
So that's a quick update on things that we're doing. I'd be happy to answer your questions or respond to comments, and again, I just want to say thank you all for your leadership and partnership. We have a long way to go and we couldn't get there without our close working relationship with you.
DR. COHN: Well, David, I think I'll first of all start out really not so much with a question but as you're talking, as I'm taking pages of notes here just noting all of your activities, I just wanted to – I think we ought to think how impressed we all are and congratulate you. I have a hard time reminding myself that you only came on mid-year this year, and I think the progress you've been making has been nothing short of phenomenal, so –
DR. BRAILER: Oh, thanks.
DR. COHN: -- we want to congratulate you.
DR. BRAILER: Actually three years in the past six months.
DR. COHN: Yes, exactly! I think that's certainly the observation one would make, so – I mean, great work. Questions from the full Committee? Mark?
MR. ROTHSTEIN: Thank you, David, for that presentation. I want to assure you that the Privacy and Confidentiality Subcommittee is planning hearings this winter on the issue of patient controlled limits on the contents of AHRs.
I – the issue, as you know and have expressed, is a very fundamental one, and as I see it is something along these lines. Patients are, or many patients, would be reluctant to participate in a system with a longitudinal electronic health record if they didn't have some control over the contents of that health record.
On the other hand, many physicians and other providers are reluctant to provide services to individuals who have expunged their record, making it very difficult to provide quality health care, exposing them to liability, requiring them to take additional information, and so forth.
So, we need to figure out how you can accommodate these physicians in a way that won't totally destroy the viability of the system, and that's quite a challenge for us as well as you, and we hope to get to work on that this winter.
DR. BRAILER: Thanks. I welcome that because I, as you, when I look out and see the real fundamental bridges that need to be crossed to get where we're going with interoperable, widespread use of electronic health records. That is one.
And, you know, the public confidence in this, which I'm sure when scrutinized will be acknowledged, that this is – these technologies have the capacity for preserving privacy in a way that paper cannot raises the
relationship issues, as you described, between doctor and patient, but many other issues, and we want to make sure that we understand the consequences of these and then we can ask for the public confidence in a way that is based on good fact and good data. So we look forward to working with you on that.
And the work group that we've formed internally is trying to develop a set of questions that we think we need the answers to, but I think by no means can we answer all of those questions internally, and so we'll certainly want to interact with you on that.
MR. ROTHSTEIN: Thanks.
DR. COHN: Michael?
DR. FITZMAURICE: Earlier this morning, we had an update on the Departmental budget situation and Congress is not in session so there's – all we can do is debate about it. But we've heard that in the President's request for $100 million that – which would be $50 million extra for the Department, a continuing $50 million that has already been spent – that it had been reduced on the House side and then reduced on the Senate side, and yet they still have to get together and compromise on their thoughts.
In talking with people in the private sector, I hear a lot of great support and some kind of astonishment that such a large goal is – has so little funds. Sometimes that happens because people don't know exactly what the framework is and what the goals are. So I guess my question is: Has there been ample opportunity for the Department to inform various members of Congress and the staff about the goals that you described in the strategic plan and to get some feedback from them?
DR. BRAILER: Well, first, I – you know, I certainly support the President's budget request and, you know, I think we've tried to use the opportunities that we have to educate Congress about why that additional $50 million is important and necessary, and I think we've made good headway in at least explaining what it is that that's for.
On the other hand, I think we have a long way to go, for two reasons. First, you know, this agenda is one that is – you know, it's not IT; it's about the fundamental function of the health care industry. And it is something that requires a lot of education. And there are key decisions that need to be made.
And so I think there's a set of sequence that we need to be able to spend some of that $50 million to be able to be in the position of having more thoughtful issues addressed downstream.
But secondly, there is – unlike many things that happen, I think, in health care, this is one of the few
areas where the discussion isn't about how do we spend the money to achieve a social goal. It is: How do we achieve – how do we spend the money to achieve a social goal and put ourselves in the position of saving money? And that is so unusual that we've gotten caught in a lot of very thoughtful discussion around pro formas and the analysis of what the expected value realizations will be, and clearly that $50 million is small compared to what a long investment might need to be to get those benefits. But it's changed its posture.
So I think we – it's not been adequate. We've done a lot, and I'm hoping that in the end that either the Senate itself or the conferees will come together and will restore that funding and that we'll certainly be talking about where we go from here next year.
DR. COHN: I guess I just follow up with that comment ‘cause I think we – I know you've been having many thoughtful conversations about cost benefit and I think it's a really critical question in all of this. There's obviously going to be many ways to put all of this together where it'll be of great value but it may cost more, and it's going to be a difficult issue.
How do you see moving that agenda forward in a way that actually moves to implementation? Do you have thoughts about that?
DR. BRAILER: Well, let me tell you what we're doing, and then where it does from here, I think, to be candid, is probably not – it's obviously not my decision so –
We are looking – we wanted to step back and ask ourselves: What is the economic basis for health information technology? And we looked at it from two perspectives, in the way the health services market works in the private sector, in the way federal health spending works internally.
And we have since now developed 15 value propositions across those two large divides, and there's actually some interface that sits between them obviously in terms of procurement and in services, in and out. And we're now in the process of validating those conceptually and then with whatever data that we can find about whether those value propositions should be deemed offsets against spending.
And some of them are pretty straightforward. For example, it's no surprise that in an uncoordinated environment with about $5 billion in spending health information technology, which is what the federal government is spending, there are silos, there are duplicative efforts that have existed within agencies or within Cabinet departments that have not been aware of each other, that if they were, they might have different enabling assumptions but turn out to be achieving the same goal. And we're now in the process directly through that scorecard finding those efforts and understanding whether or not there's an opportunity to streamline those. Those are straightforward.
Then we have the more conceptual ones; I think they're the more famous ones in terms of reducing duplicative testing and, you know, that Medicare pays for, or unnecessary hospitalizations. And those are further out in terms of how immediately visible they are to the budget.
So we're trying to get a sense of how confident we are that each of those value realizations can offset investment and what kinds of investments can bring those back.
So we're doing that now. It's a pretty – if you can imagine – detailed and data intensive process, and I'll be candid: It's probably the most time consuming thing that my office is involved in, but it's the least visible because there's so much just in the – just in collecting data and trying to find models and do this.
And so I – where that goes from here, I think, is a separate decision. You know, we're trying to create opportunities for decisions to be made about this topic, but clearly those decisions have to be made by people in the Executive Branch that feel like this issue has been adequately evaluated, has been analyzed, and has broad enough consensus about what, where, how and when that it's worth kind of taking the next steps.
So that is our goal, is to do that evaluation and at some point, I think, you'll see hopefully more of it.
DR. STEINWACHS: Don Steinwachs. Talking about value, I guess – when you think about the longitudinal record and the idea that eventually that can extend from birth on, I guess one of the basic sort of value propositions is how useful is that information as you think of it over time to the patient care process and to the person, him or herself, and also we recognize that probably that information will have errors in it and other things, and so that also by retaining all that information over time, you're in a sense retaining – are there groups working on – I haven't been in looking at research recently in those kind of areas about – how do you begin to assess what is the value of information as it moves along, and so
I as a patient or consumer can say, hey, that part of the record I don't want to share, but these parts are critical that I share with the next provider because indeed that could influence important clinical decisions versus just being information that probably is no longer used?
DR. BRAILER: Right. There is work done that's underway on the social-economic benefit. Blackford Middleton's group at Harvard did this study of interoperability and they looked at a variety of scenarios of how interoperability could offset existing costs, and that's where they found the $87 billion in savings estimate that's been discussed a lot.
To your question, though, that is only economic, which means it accrues to those who have, you know, financial skin, which are largely payors. I don't know that there have been a lot of studies that look at this more from a social, uneconomic perspective, you know; from a quality of life benefit perspective there.
There clearly have been a variety of studies that look at health status benefits in electronic health records or of data availability, but it's not been comprehensively looked at. In fact, one of the challenges we have across the board is trying to make appropriate generalizations from little dots of these studies that exist kind of out in space, trying to understand, you know, how to connect lines.
So there's some that are suggestive. There's not a body of evidence from which the kinds of policy decisions that normally get made was stressed upon. And so it requires a lot of inference. And one of the reasons that I think the AHRQ studies that are currently underway are so valuable is that they will dramatically expand that body of evidence.
But I think that even putting those aside, there are the nonsocial, economic and non-economic benefits. They're more what I've called the accounting benefits, which are how do we spend money on things today, either NIT or not, that because of the way we manage them, we can get more mileage out of them, the effectiveness of federal programs, the degree of leverage and efficiency of spending?
And those things, I think, ironically have more visibility in terms of the short-term savings than the real kind of savings that are out there because of the certainty of the estimates.
So we're working on it, but it's – there's a real evidence gap that needs to be closed before I think this becomes just obvious to people.
DR. COHN: And Vickie, one last question, and then we'll –
DR. MAYS: Anybody thinking about – in terms of the e-health record, about the mental health utilization data, whether or not, for example – I mean, some people actually go out of their way to pay out of pocket, insure that those things are somewhat hidden, but at the same time, as we start to think about health, we need to have people's mental health data combine with the health data.
And so there's mental health data, there's, you know, drug and substance abuse data. Is there any discussion? I mean, these are going to be particularly thorny issues.
DR. BRAILER: Sure, and it's not even just a mental health or drug. Clearly, HIV would fall under that category as would a variety of disabilities where there's some sense of potential stigma or a bias in treatment that's been shown in other studies that would make us have reason to think that there's – there could be special status for those.
There's two issues with that. One is, how do we regard those? And the second one is, should we regard those? And I mean the latter this way. There's so much that's happened in states about a variety of those types of data. There's one separate discussion that is – if the continuation of that is a state effort, what is the role of federal activity over and above what's already been done?
And secondly, if there is, how should they be regarded? And one of the topics in our own privacy discussion group is exactly that, and I hope that you'll continue that in your work as well because this is an area where, you know, there isn't enough guidance, and there's clearly a lot at stake.
So it's a topic on the agenda. I don't have an easy answer. In fact, I'm afraid there isn't an easy answer to those. But we at least need to think about how to conceptualize the problem for a variety of different outputs, whether they're technology or policy, federal, state, et cetera.
DR. COHN: Okay. And I didn't see Jeff's hand up in the corner. Jeff, I'm sorry; you're in my far left. Do you have a – why don't we let you have the final question, and then we'll take a break.
MR. BLAIR: Oh – well, and maybe you've – you answered this in part. Let me phrase what I think I heard you say, is that in terms of the initiatives being done by ARHQ and CMS and ASPE and all of the others that relate to data exchange networks, relate to standards, relate to quality improvement, I gather that we're still a little bit way's away before we can fold in how these all fit together into our HIOs and NHIT. Is that correct?
DR. BRAILER: I think yes, although how far we are varies. I think we have great urgency to understand what I would call the first pass implications of those topics in the regional organizations. Said another way, we know that whatever criteria we promulgate this spring for regional organizations will not be the final work, but we want to be close enough to give good guidance and start helping so many different efforts along so they can start having real standing. I think that process will unfold in a relatively linear basis.
I think the broader questions, though, Jeff – I don't know where the receptor site is. I understand how they fit into RHIOs, but into broader IT policy – and I think there's a question here about what is the framework going to be on – our strategic framework, what's the policy framework overall? And I think that's one of the questions we're dealing with a variety of the organizations you mentioned; there are fiscal components, there are privacy components, there are – with technology development components, and I don't mean that in a software sense but I mean it in the industry sense. There are manpower components. There are organization and oversight components.
You know, one thing that I think the – happened quite well – I'm living through this in the past six months – is the – you know, when you create a canary in the cave with a national coordinator that cross-cuts a topic, you discover many things that either would tell you that there was no need for coordination because things are pretty optimized, or in fact that there are many issues that need to be addressed and uncovered. And we found a lack – this topic is big, it's significant, it's – it has huge impact, but almost by definition it reveals a question about what is the whole framework, how we view this, in a policy sense. And we're struggling with that right now, and you know, again, my view is our role is to create opportunities and options, options for the elected leadership to decide how they want to move forward and opportunities for society to move forward in their own way, because this will never be solely a federal issue.
So, you know, I think we take that view, but I think it does beg this broader question that ultimately we want to wrestle with in the name of health care overall.
MR. BLAIR: Thank you.
DR. COHN: Okay. Well, David, again, congratulations on, I think, what's been some exceptional work over the last six months, and obviously we're happy to help you in any way we can, and I guess we'll just be a continuation of that ongoing effort.
I think with that we will take a 15-minute break.
(Break)
DR. COHN: Okay. Over the next hour and a couple of minutes – we're going to first start with an update on the NCHS Board of Scientific Counselors. Excuse me; we're starting. Thank you.
First is the update on the NCHS Board of Scientific Counselors. Then we follow that with a discussion around the Population Report. So, Aldona, would you like to take a lead?
Agenda Item: NCHS Board of Scientific Counselors Update – Dr. Mays and Dr. Robbins
DR. ROBBINS: Yes, thanks, Simon. I'm going to give you a brief update of what the Board of Scientific Counselors has been doing.
There was something that was supposed to be in the briefing books which is just an updated roster of members, and that's sort of coming around to you in two different directions.
The Board began its second year with a meeting last September, and we welcomed five new members. You can see them on the roster. They are the ones whose terms will start – begun in May 1st of this year, 2004.
We are still in a something – we are still to some extent in an organizational mode, but we did make some progress. There are two major topics discussed. One was the CDC reorganization and the second was how the BSC could best assist the NCHS going forward. And I'm slipping into acronyms which is, I guess, inevitable when you're working with government, but –
On the CDC reorganization, Dr. Sondik, who's the NCHS Director, outlined the CDC futures initiative for us and its new organizational chart, and if you remember, because you all had a briefing last June, I believe, NCHS is going to be put in – there are going to be new coordinating centers at CDC and NCHS is slated to be put in the center along with Health Information in Service and a National Center for Health Marketing, and also a National Center for Public Health Informatics.
Now, the Board members had much of the same reaction that this Committee did when it heard about the reorganization and specifically concern was expressed about the placement of NCHS in the CDC reorganizational chart is essentially – it appears the agency's been moved down a level and whether the extent to which NCHS will have – continue to have the control it does now over its budget, its research agenda, data releases and personnel decisions.
And after the discussion, the Board ended up taking its first formal action, and that's in Tab 3 of your book. It was a letter to Dr. Gerberding, who's the head of the CDC, and it extends – the letter extends her to a meeting at our next meeting in January and invites her to come and discuss the reorganization and its “effect” on NCHS's ability to function in its role as the nation's principal health statistic agency.
Our second area that was – we spent a lot of discussion on is related to what we're going to be doing over the next year and specifically how we could best help the National Center going forward.
Perhaps the most immediate thing will be – the CDC has a requirement that its agencies conduct peer reviews of all their programs, and I take it this is probably in many cases the first time this sort of thing's ever been done within the agency.
So for NCHS, it's going to include their data surveys and their research activities. So a subgroup of Board members who have had prior experience in – with program reviews will be discussing coming up with – yes, the thought was to come up with some kind of a structure of a generic review, and we'll talk about that more at the January meeting and then perhaps that is the basis on which the various data surveys and agencies within NCHS, or programs within NCHS, can go about their peer reviews.
Vickie Mays and I – Vickie's your liaison to the Board – also relayed the proposals that were made last August from the NCVHS Executive Committee that concerns some joint activities over the next year or so between this Committee and the Board, and Dr. Sondik welcomes the suggestion of these joint meetings; they were going to talk it more in January.
And the last thing I have is that I was invited to a meeting of the Populations Subcommittee about a week ago and I'm going to be taking back an idea from them, and in particular I want to thank Vickie and Jean on the Committee to use the NCVHS report health statistics, The Vision for a 21st Century, that I think many of you probably worked on, and perhaps that that might be a good framework to use in terms of these – developing these program reviews ‘cause it's sort of – there is sort of a natural link here.
And so I think I will stop here and in fact I'll – you may want to say more about that, Vickie.
DR. MAYS: In terms of (?) from this side, it – again, I think I agree that things are still in the organizational mode and so most of the work was actually done to get this letter out and a couple of other planning activities.
One push that we'll probably do is to try and see if we're going to have the joint meetings to try and get them on a calendar, so – I think we talked about when we thought it – you know, to do this, which – of course, it is in 2005, but if – as we sit here, the extent to which the meeting times are really getting taken up by some of the subcommittees that we might want to try at the meeting and actually see if we can nail down a time.
The Subcommittee on Populations met on October 26 and one of the things that we – you know, as we go through what some of our responsibilities are, one of our responsibilities is actually to be monitoring the report from the 21st century – Health Statistics for the 21st Century. We've tried here to make sure that we integrate, you know, population health issues into our activities, so realizing that they're about to do a major evaluation and kind of look towards the future, we put it on our agenda to figure out how to kind of hand that over to them so that that would be kind of an ongoing part of their process.
So at the meeting we did talk about that, and I think this is probably a very good time for the BSC to begin to think about how you want to really try – since it was a joint project, how you want to think about population health and integrating it as you go forward in terms of whatever the evaluation is going to reveal about new directions. So that – so we kind of, you know, wanted to talk about that, and Aldona was at the meeting, so I think that is going to go forth.
DR. ROBBINS: Yes, I'm certainly going to make
that strong suggestion, anyway.
DR. MAYS: And then the other thing is that I'm
probably going to ask this group is when we do the research agenda to figure out if there are specific things in the research agenda that are NCHS related that we make sure that that's something then that we can kind of pull out and report on for the BSC meeting. So, you know, that's about it in terms of, from this side, in terms of the report. Marjorie, was there anything else that came out –
MS. GREENBERG: No, there was nothing else.
DR. COHN: Okay. Any questions? Don?
DR. STEINWACHS: Don Steinwachs. In the program reviews, is the effort to look at both current activities and current surveys, things they used to do, things they might do? I was just wondering, is the review sort of where they're at right now or does it try and sort of project where they think they ought to be or how to use the framework of the Health Statistics for the 21st Century, where maybe they ought to be pointing?
DR. ROBBINS: Right. My sense is that is really a review of what is, largely what is, but also then we want to work in – I think the Center would like to work in some idea of where do we want to go from here, and I know that the Board, I think, is – that's where we're most interested as well and so, you know, things like what are the extent – are there questions or – that may have outlived usefulness? Is there – are there questions that should be added and what are we trying to accomplish with these surveys, too? Where are they going to – how is the information – what's the best way for this information to be used and is it – who are the clientele and so forth and so on?
DR. STEINWACHS: Yes.
DR. MAYS: I know there was a discussion of the scope of the review and I think that's what they will decide upon next, but, I mean, the scope was all the way to do we have the right people that we need to be able to do some of the things that we want to do? So it won't be, as I understand it, just to look at here's what we're doing but also in terms of directions they want to go in and what it will take to do that.
So, I mean, that's why I think this is like, you know, just a really good time to make sure that if, you know, there are ways in which we can be helpful, it's a good time for us to be helpful.
DR. ROBBINS: Yes. And I also – both Vickie and I are also bringing back a lot of what we're hearing here about the information technology ‘cause that's what this Committee is spending so much time on. And, you know, that we have surveys that go back 30, 40, 50 years, and all of this is happening very quickly and in some sense it is to what extent do these surveys fit in with this potential new world? And so, you know, that was discussed to some extent as well, and how do we fit in with that?
DR. STEINWACHS: Could I have a second? As you look at the organization -- I know, once you meet with Dr. Gerberding, you'll probably have a much clearer idea of how these pieces fit together, but is there a sense now that the Director Ed Sondik shared with you about how the different organizational units in this new division that really covers all of sort of public health information or data needs and surveillance, NCHS, and there was another one, how they're supposed to work together? Or is it just sort of an idea that they're all in the same place and the work together is – could either be a plus or a minus?
DR. ROBBINS: Yes. I think it's still – they – I didn't have a sense that they'd move much further than we were with – you know, when you saw the charts last June --
DR. STEINWACHS: Okay – yes.
DR. ROBBINS: -- and I'm not even sure whether they're – Marjorie, I don't even know if they've staffed any of these other –
MS. GREENBERG: Yes, I think Jack wants to –
DR. ROBBINS: Jack – okay. Sorry.
MR. ANDERSON: Let me back up a little bit and answer your first question also, which is to give a little – how this came about, the peer review.
Dr. Gerberding is a strong reviewer, peer review, and when she came to CDC, as CDC has moved into more research over the recent years, a lot of the research grants actually have not received peer review; they've what we call ‘em, objective review.
And so one of the first things she set in place was that grant programs had to receive peer review. And once that was in place, she said, well, we also need to do this for our intramural programs, and so it was actually to focus on ongoing projects rather than future.
However, that said, Ed Sondik has a great desire to get a lot of input on where we ought to be going, and so whether we do it through that peer review process or we have to build something else, we'll be looking very much for that input on the future.
As far as the organization goes, the idea of the coordinating centers was to bring together, closer, those centers that would seem to have more synergy between them. So the idea is not that we would just pop together these three centers and the coordinating centers and operate independently.
That said, most of our effort today has been in trying to actually set up these organizations. Within our
coordinating center, the new Center for Marketing and the Center for Informatics don't exist, and so we need to bring those together and actually set them up. And so even though that the idea is that there'd be a great deal of synergy between the three, the other two aren't there yet. We actually informally stood up the Marketing Center October 1, but the Informatics Center is not even informally set up yet.
So, clearly the idea is for synergy between the three centers, but quite frankly, right now we're moving to get the organization in place.
DR. COHN: Gene?
DR. LENGERICH: Thanks. I'm Gene Lengerich. I wanted to follow up on something, Jim, that you had said earlier this morning, and that is related to the coordination or standards set up for across health surveys – is that what I remember you're giving us? Was that part of what you had said? And I'm just wondering if the Board of Scientific Counselors is going to be involved in that action as well then.
MR. SCANLON: No, well, we're – what I referred to this morning is – remember, the Board of Scientific Counselors is advising NCHS on the scientific and programmatic content of its programs. These reviews that I mentioned earlier, those are really federal agency reviews of data needs. Some of those surveys are conducted by other programs than NCHS though NCHS is clearly a big part of that.
So, I certainly don't have any problem with having someone from the Board, you know, participate in the meetings as long as we could do it without getting into trouble, but this is a broader – across the federal agencies and even the Congressional Policy Research offices. It's looking at the data that's needed, the adequacy of the data, in a few areas, and then what are the ways to proceed, so it's a little broader than your framework.
DR. COHN: Okay. Well, maybe we should move on to the Population Report? Is that a –
Agenda Item: Populations Report – DR. MAYS
DR. MAYS: Okay.
DR. COHN: Okay, please.
DR. MAYS: Okay. What I wanted to – oh, did you – tell them about the new members?
DR. COHN: Yes.
DR. ROBBINS: Yes, I did. I just mentioned that they were ones whose term starts last May.
DR. MAYS: Okay. Okay, there's that handout at your place which is Proposed Structure for Population Report.
As many of you know, we have this – you know, it seems like it's never ending but needs to come to a close. I feel like I'm – you know, this is a – I've lived with it or something too long. But anyway, what we thought would make sense is rather than plop down a large report for you next time with no familiarity and no background, what we wanted to do is actually go through the structure and just talk about it conceptually as to where we're going and also to kind of hear your input so that, you know, as we make decisions about, you know, how much we're expanding or not expanding something that we have some idea of where you are relative to some of these issues.
So what I'm going to do is actually to walk through it. I have some graphics; I'm trying to decide whether to use them or not because I don't want them to pull us off of what is the actual outline. The graphics actually are the ones that have come from previous presentations on population health that I just want to kind of bring us back to, ‘cause what we're trying to do in this report is to integrate the kinds of perspectives that we've been taking that are very specific to population health survey.
Starting with the proposed structure, we're not going to start with the summary, but what I thought we would do is talk about it, and let me go through a section and then we'll stop and have discussion, answer questions, and kind of do it in big sections as opposed to trying to walk through the whole thing. Does that –
DR. COHN: Yes, I think that sounds fine. I think maybe you might want to focus on the purpose of the report first just to remind us all and make sure that we're all grounded in that –
DR. MAYS: Well, there's actually a place there –
DR. COHN: -- which is Section 1.C., I think.
DR. MAYS: Yes, I was going to say there's actually a place in here where I'm going to do that, but let me kind of do it in terms of, well, what's important, and then why we're doing the report, so we're going to kind of start out with the background. Oh, I think that went on the Internet. So, let me – I guess I'll read some of these.
We're starting with articulating the main issue that's addressed by the report and what the importance is of these issues. And there are five points that are there.
One is the federal efforts to eliminate health disparities and improve the health of all Americans depend on the ability to really be able to target those at high risk and with great need. And as you know, this actually dovetails quite well with Healthy People 2010 which, you know, HHS conducts under the leadership of the Surgeon General, who has major responsibility for Healthy People.
Any of you who've been involved the Healthy People initiative know that one of the things that's necessary in Healthy People is to set targets, and those targets are to achieve kind of better health for all Americans. And the process of how specific those targets are I think really will depend on whether it's, you know, Healthy People 2000, Healthy People 2010 and, you know, as we begin to look to Healthy People 2020, but, you know, it varies in terms of specific targets for racial and ethnic minority groups.
The targets – say, for example, if we were to talk about the reduction of diabetes or some disease, often what you will see is that in order to set these targets, they will use NCHS data sets, they will AHQR's data sets. Typically, the targets are set using population-based data.
So what you run into is that sometimes targets are not available for subpopulations because of the lack of that subpopulation data. So this is just to kind of give you a sense of how important the need is for having data on subpopulations.
Two is the target depends on adequate – this targeting depends on adequate data about the health status and health needs of specific population groups and subgroups.
Three, the groups at particular risk of ill health and poor health care are those about whom health statistics and data are often most deficient.
Point three is an interesting one in that one of the worst groups in terms of their health are actually African-Americans, and we have a significant amount of data on their health, and we've had that for the longest. On the other hand, we don't have comprehensive data on American Indians, we don't have comprehensive data on Mungs or a lot of other subpopulations.
But what we know from Census 2000 is that these populations are, you know, putting American Indians aside, the fact these other populations are increasing in the U.S., and again it's like part of the data need that we have is to be able to target what the health needs for these groups are as well as for health planning.
Four is improving the collection and use of national data on racial and ethnic groups can make substantial contributions to efforts to ameliorate health disparities and improve the health of all Americans.
So again, part of where this leads us to is it's important to improve the data collection of data on race and ethnicity so that we can provide the kind of data that I was just talking about as well as to be able to determine the health of these populations so that we can improve the health – their health status and reduce morbidity and premature mortality.
Five talks about data gaps first identified in the Heckler Report. We'll be talking about, you know, acknowledging that. You know, that was where that was done, what improvements have been made in the 1990s and the need for the collection of race and ethnic data increasingly because it's becoming a norm in research in terms of that data.
Section B really talks about briefly explain the role of NCVHS and the Subcommittee on Populations and why they're concerned with these issues. The question of why is always a valid question and for us, part of where this began was in 1997, OMB guys came along and it was determined that race and ethnicity would be collected differently than it had in the past.
There was a lot of preparation, for example, by the Census Bureau in terms of getting geared up for Census 2000 to determine how to best collect this data, what are the questions, what order should these questions be in – I mean, there's a lot of methodological work.
And in addition, what we knew is that OMB guys had recommended that the federal data collection systems be ready and in place by January, 2003, to collect this kind of new perspective on data on race and ethnicity.
So, the Committee at the time that it started really wanted to see where things were in terms of whether agencies were ready. They wanted to get a sense of whether agencies were going to be asking for variances in terms of how the data was collected. We wanted to see what the development was like in terms of mechanisms in place to bridge from the old data to the new data. And we also wanted to know, in terms of these large scale surveys, what other variables that they thought would be important to determine health disparities and some insights from them in terms of what kind of data is needed to be able to put into place planning for the reduction and elimination of disparities.
So that was really the background of why it is that we even started having hearings and beginning to concern ourselves with these issues.
Next part is – you know, in terms of describe the purpose of the report, and really, the purpose of the report is to begin to examine the nature and limitations of national health data on racial and ethnic – it should probably say “subpopulations” – as currently collected and used.
And two is to recommend strategies and actions for federal agencies to take to remedy these problems and fill the gaps.
Next section really has more to do with what kind of sources did we have for this report. ‘Course, we had the hearing back in 2002, and in this hearing what we did was we brought in some of the major surveys from NCHS. For example, we had Jackie Lucas, who's on the Subcommittee on Populations, come in and talk about the National Health
Interview Survey. We had NHANES in. We had the National Survey of Family Growth. CDC, also for example, was there to talk about the Behavioral Risk Factor Survey. We had the Agency for Health Care Quality Research talk about MEPS. So a lot of the major surveys were there to answer some of these questions.
And we asked them – we gave them a set of questions and we asked them, for example, to tell us a little bit about how they were collecting race and ethnicity. We asked them to identify contextual variables that might be important in determining health disparity.
And of course, the variables that -- you know, and we could predict this a little bit from research – the variables that often were identified would be to collect data on social/economic status, to collect data on education and I think, depending upon what the particular survey was, we might have other contextual variables that they thought were important.
But yet an issue that came up was that one of the things we have to remember is that different ethnic groups have been in this country for different amounts of time, and in terms of thinking about when we just look at data by race, we don't really then understand a lot about within group differences. And so it becomes important for us to be able to have numbers that give us a large enough population to be able to look at within group differences.
So for example, we can think about looking at the health status of African-Americans, and it may look horrible, but then again when you break it out by education, when you break it out by where people live, when you break it out by income, you might see a different picture.
And one of the recognitions of why we need to do this is that we're at a place with racial and ethnic minority groups that there is enough within group diversity that it's time that – I mean, it's kind of the state of the art in many other places – that it's time that we try and generate data that will allow us to do that.
The other place that we have information from that we're putting into the report, and this actually ate up a lot of time but I think was worth it, was that – when I first began on the Committee, I was trying to understand the history of this particular Subcommittee because it's had a lot of names, different names and iterations, and so I wanted to kind of see historically what it had done particularly in the area of minority health statistics.
And so in looking through the archives, what I actually found was that there was actually a lot of recommendations that have been made in the past but they haven't necessarily been enacted. And I think some of it is a lesson that I kind of learned, which is some of them are mom and apple pie, some of them are things that, you know, oh, of course we all want to do it, but budget! Some of them are very general and very broad.
And so again I think that in the past what that has done is it's led to the recommendation – but I don't know that it's actually led to enough specific strategies necessarily that were affordable and could be done, you know, without major budget implications, so I've kind of learned some lessons about where we need to try and go this time in terms of some of these recommendations and also that it's not just the issue of thinking about the data itself but the mechanisms by which these things happen. Are there ways in which there are particular stakeholders like health plans, are there ways that there are stakeholders outside of HHS that we need to start thinking about in terms of our recommendations so that we can broaden that recommendation to not just dependent upon the Department to do it?
So, I think that, you know, as we push along in this process and discuss the recommendations, my hope is that we will kind of hear from some of you places in which we might need to change them in order to engage stakeholders that I think are more appropriate than just depending upon the Department to do this.
DR. COHN: Vickie, are you done with Section 1 now or are you into Section 2 or where are you?
DR. MAYS: No. Let me just get the – I'm actually doing D. I just did Part 1 in D and I've done 2 and then I'm about to move to 3.
DR. COHN: Yes, okay. Then we'll have a conversation at that point, okay.
DR. MAYS: Yes, and then we have a conversation.
And three, in terms of reports and recommendations of other groups, one of the reasons we're also pushing forward with this is that there have been a lot of reports that have emerged from the Institute of Medicine, and those reports I think have been very good at making the business case as to why it is we need to collect data on race and ethnicity. So I think that relieves the burden from us to do that but at the same time what we have is that, as these reports are being released, we don't want to be the last to offer some comment.
So when we brought to you the commentary, for example, the last Institute of Medicine report on the collection of data on race and ethnicity had just come out, so what we did was we made sure to reference that, and that's something that we will also try and do in this report is to comment when we have recommendations that are overlapping with other major agencies like the Institute of Medicine so that it makes the business case.
E is just providing a roadmap to the report, which is just an outline, so I don't think we need to discuss that.
So what I'd like to do is actually to stop here and to take comment, questions, concerns.
DR. COHN: Okay. I guess I just had one question and then – obviously I don't know the frequency of your hearings or exactly how you do it, obviously. I'm at usually the other subcommittees.
DR. MAYS: Not quite as many as yours but –
DR. COHN: Right! Nobody does quite as many as ours [Laughter.]
DR. MAYS: But anyway – go on.
DR. COHN: But I guess I was wondering as the source material – I was looking at the – it appears to me that this whole report is substantially being generated out of the 2002 hearing, and I may be mistaken; this may be misrepresenting that. But I was wondering – I was just sort of counting that, well, gee, we're almost at the end of 2004 now and wondering whether or not some of that data needs to be refreshed or revalidated, given that we've had two years of history since. Am I off on this or do you feel that that's still the pertinent up to date information that should guide this work?
DR. MAYS: The primary hearing that we had on looking just at the population-based surveys was in 2002. We followed it up with several other hearings. We've had a hearing on state data, we've had a hearing on – in our breakout session we had information on vital statistics, and then we've had specific population hearings after that, so that probably took us through 2003 and maybe early 2004.
So that's helping to inform us. And, the population-based data sets, most of them belong to NCHS, and so we've been working closely with Jackie Lucas and Jennifer Madans to insure that if things that we thought were the case in 2002 have progressed along, that those things are getting removed or deleted or enhanced as, you know, as appropriate.
DR. COHN: Okay. So I just misunderstood then. This is really 2003-2004 hearings as well –
DR. MAYS: Yes.
DR. COHN: -- we're all talking about.
MS. GREENBERG: Yes, I was just going to mention when I looked at the outline that although I remember that – the hearing in I guess it was February 2002 –
DR. MAYS: Yes.
MS. GREENBERG: -- it was extremely interesting, but I know you had several other hearings in 2002 as well as in 2003, so I assume that all of those were going to contribute to this?
DR. MAYS: They will inform just the specific area of population health reports. Each of the other hearings were a little bit broader or not quite on the same topic. Here where we're talking specifically about the federal government's national population-based survey, the other hearings, as topics come – came up in that hearing that were relevant to those surveys, it will inform it, but the – we're not trying to take and put all of the hearings into this one report.
MS. GREENBERG: So this is primarily about the national surveys?
DR. MAYS: Yes.
DR. COHN: Okay. Bob Hungate, and then Mark.
MR. HUNGATE: I wanted to pick up on the comment on the concentration on both federal efforts and national surveys and make the observation that surveys are fairly lengthy between data collection and data dissemination, that the data's pretty old by the time you see it.
And I'm of the quality improvement school, believing that what we're trying to do is reduce disparities, and that if you're going to do that, you got to know what's going on today.
And so it seems to me that it's important to do the linkage between what's done federally and what's done in the private sector. And I think that moves you squarely into the administrative data. what happens in the collection of race and ethnicity in the administrative data, which we haven't fully grappled with.
But yes, it's an action item, and where most of the work will be done to make it occur. Yes, so it seems to me that that's something we ought to deal with in order
to strengthen the impact of the report.
DR. MAYS: I agree there is –
MR. HUNGATE: Makes sense?
DR. MAYS: -- oh, no, it makes a lot of sense.
One of the discussions that we did have was about how quickly data can move from the collection to its dissemination and even then by some people's standard it's old. But I think the question is, really: What is the outcome of what you're needing to look at? There's some think that that – it's fine and then there's more immediate things that you might want, you know, the data to be, you
know, just straight out of the field.
One of the issues has been, particularly for NCHS, is resources to turn it over quickly. They have actually decreased – and I'm sure Jackie would comment on this – the time from collection to availability for the user to be able to work on it. So I think that is continuing to decrease. And technology is allowing us to decrease back.
But the other issue that you bring up is one that later in the report we talk about and that is linkages. Linkages aren't quite as easy as it seems. There's all kind of privacy, confidentiality. There's issues with, you know, data that's collected at NCHS and, you know, how would one link that with, you know, private? I mean, we can – there's talk about linking – having better linkages with other surveys and other data that's both, you know, survey and administrative.
DR. COHN: Okay. Mark?
MR. ROTHSTEIN: Vickie, as you know very well, any documents, studies, surveys et cetera that call for increased use of race – let's leave aside ethnicity and other measures for a minute – are often responded to by the assertion that because race is not a scientific concept, it's only a social concept, and mentioning or collecting more “race specific data” just reifies this pseudo-science et cetera, et cetera.
And is it your plan anywhere in this document to address the issue of, okay, even though it's not a scientific distinction, it's a very important social distinction in our country, and why race specific data with ethnic specific data et cetera is an important link in trying to eliminate disparities?
DR. MAYS: Yes. Let me just take the cup off the chair.[Laughter.]
PARTICIPANT: Oh, oh – you asked the wrong question!
MR. ROTHSTEIN: Can I withdraw it?
[Laughter.]
PARTICIPANT: Too late, Mark, too late!
DR. MAYS: He was a plant – no, kidding!
I actually have a slide – maybe I'll try and use some of them, but this is actually from a presentation that I did.
What is we will talk about is kind of the fact that how race and ethnicity classification is used, but then we will also address this issue, that it's a social construct. In part what we advocate for is that we have variables beyond just race. I mean, I think, the opponents will say that we're reifying this construct, it's not a good construct, but at the same time one has to look at, you know, this is the way in which, you know, we conduct our business in terms of health. And we're not trying to change all of HHS but I think we're trying to convince people that there are some valid approaches that can be used, and what one has to remember is that race probably alone is not the only variable you want to look at. So that's why we want to do some of the contextual data.
MR. ROTHSTEIN: So would that be in the introduction?
DR. MAYS: Actually, we haven't thought about putting that high up, but I have a feeling that, you know, I can – as you talk, I can see the groups that will actually, if it isn't, you know, sooner in the report, will then just attack the report and maybe not even read later where it's buried in the report, so I think that's a good suggestion, so I think we will – yes, that's a very good suggestion. Okay.
Shall we go to the next section, so we could – that's why I wasn't going to do all the slides ‘cause I thought we'll never get through this – let me try, but I like Mark's question about that.
Okay, in Section 2, which is the overview of the uses of race and ethnic data and relevant data systems that collect these, again, part of what we do in starting this is to say all the different places that this data is used, but – and that we need it, so it's not just in terms of surveys but that, you know, it's in clinical research and health care utilization and outcomes research, and where we have federal programs – Medicaid managed care, you know, et cetera, these are little notes to us. If you see little question marks, this is like internal working notes to us.
In Section A what we did was we made the case for the different uses of data on race and ethnicity to demonstrate that it's important to most of the mandates that are within HHS. And the hope here in this section is to understand that investing in better collection, that there really is a big payoff, that we're not talking about just changing a survey, we're not just talking about the importance of this to a couple of things, but that if this is enacted throughout that the quality of data collection throughout HHS is increased, that that just helps all of us.
For example, one of things later you'll hear us talk about is that we're probably going to have a recommendation about the investing in developing guidance or some kind of training so that individuals who actually collect this data, like, for example, funeral directors – funeral directors fill out your death certificate, and there's very little training. I mean, having kind of gone through some incidents within the last couple of years, I now understand and I was there trying to correct him and help him and give him little lessons about, you know, what to do in terms of this variable.
You know, I think that, you know, having some, you know, quick and easy things for these individuals to think about as they fill out death certificates – or even in a hospital as mothers fill out their birth certificate.
Again, these are places where a little bit of training will be helpful.
When the discussion in the quality work group was going on and people are trying to figure out, well, who actually if -- you know, the health plans are collecting data, who's going to be the person?
Well, if it's a clerk at the desk and you come up and say, well, I'm pre-O, she's kind of look and she says, I have these categories; now what does that mean? Or if somebody comes up and says, I'm a black Puerto Rican, so she's like, what does that mean, now? Did I do one group for you, or two groups for you, what do I –
You know, so, in reality, you know, for the people who are on the front lines, you know, we're thinking about it in these great national surveys, but what you have to think about is when people walk up and it – you know,
particularly in terms of in an environment like a place of care and they're there for something else and they – and you say, what are you? It's like, I'm African-American, or I'm – you know, it's kind of quick and to the point.
Now, it might be, and this is one of the other issues that we will address, it might be quite fluid. You go in to see the provider and you're worried about, well, why are they asking me that? Is there some implications about my, you know, genetic history? So then they start telling you about the great-great grandmother who's German and then the great-great grandfather who's German and Irish and Scottish and Jewish and – you know, it goes on and on and on with all these different – and you stop and you say, okay – if you're at the front desk, how do – what do you do?
So, in reality there really – we really do need some guidance to help people to be able to figure out how to capture the data so that it is good quality data.
In Section 2, there's also the relevant data systems, and again, as you'll see here, that national population-based surveys is the major focus of the report, but we will, because we actually heard other things, talked a bit about state surveys, vital statistics of the disease registries, some of the targeted surveys, this is – the targeted surveys, we've brought this up before, about the need for – you know, you can't get all the data that you need and have a large enough sample size to be able to do these multi-varied analysis sometimes at the national level so that maybe you need for targeted surveys.
We will discuss a big about administrative data and also talk about this notion of the sources of contextual data.
Let's see – here it's like we – this comes from our own report, Health Statistics for the 21st Century, and so we say, this is what we want to do, this is what we think is important. But what I would challenge you with is if you go look at a survey, it is very hard to be able to get this kind of information.
But we know that many of these contextual variables are important, so what we have to do is start finding out ways in which either the surveys are going to be linked, ways in which, for example, that some of this may be added to various surveys, so we're a long ways from what we know both from theory as well as research is the way to look at health, but again it's like what the purpose of this report is, is to get us to seek more and more about how it is that we are able to get information on place and time and context and community attributes.
Okay, let me stop here for this section then.
DR. COHN: I'm not seeing any comments.
DR. MAYS: Mom and apple pie!
[Laughter.]
DR. MAYS: So I conclude the – okay.
The third section, called Challenges in Collecting and Using Race and Ethnicity Data, here's where we really do get into what complicated issues are. For example, multiple subgroups, privacy/confidentiality concerns.
In privacy and confidentiality concerns, that's a very major one for us. And the reason is, when we talk about national population-based surveys, often what we end up with are small numbers. When you have small numbers then, the result is that quite often we can't get to that data unless we go to a data center.
And typically what this has boiled down to is that the data centers are – there's like maybe one or two, depending on which agency you're talking about; I mean, Census has several – but in terms of some of the national population-based surveys, usually it means coming to Rockville. If not, you also have to worry about whether or not you can even get subpopulation data on – if you go onto public data, in the public data you're just not going to be able to get a breakdown so you might end up with a category that says Asian as opposed to being able to have the Asian subpopulations because you just don't have the numbers.
And so, again, that's one of those challenges. I mean, after collecting, the challenge is the ability to be able to use it.
The other thing that we heard consistently is people's belief that it was against the law to collect data on race and ethnicity. And so, again, we're suggesting to the Department that it might be helpful, for example, to put out some information that indeed it is appropriate to be able to collect that data.
Now, this goes to something that Mark brought up, and that's the whole notion about misunderstandings about the meaning of race, some of the debates in the field about race, whether or not it is an actual entity that we should be measuring – shall we even be talking about people's race?
There's going to be also, I think, some challenges that we have to think about, and that is, when we talk about individuals who have one or more races that they tend to select, when we talk about a person who is biracial or has multiple racial categories, what does that mean in terms of health? Should realize the science still isn't there because we haven't been trying to look at – well, would we see a different pattern in terms of disease if we knew that you were part Vietnamese and part Japanese? I mean, we haven't in the past had such fine breakdowns, so
now that we've had them, some people are asking the question, well, what does it mean? You now know that I'm half-this and half-that; what – I mean, is it that you treat me as this half in terms of the data that you know about African-Americans? Are you treating me at the other half in terms of what you know?
So there's really some, you know, research issues and science questions there that need to be addressed.
The cultural validity of the questionnaires, we're just putting that on the table to insure that as we move along that that's thought about in terms of how questions are asked and how – make sure that there's relevance across the populations.
It also comes up within the context of language. A lot of the surveys, data is collected in Spanish, but not in a lot of other languages. Having sat through now and having the privilege to analyze some of the data for the California Health Interview Survey which was collected in seven languages, you realize that you start to get – you start to be able to do some methodological work by being able to have people whose language is other than just Spanish in the surveys and to learn things about their health as well as some of the methodological challenges to do it. So that's coming up.
I kind of talked about there's problems in data
collection; it's almost like, okay, what's – if one has more than one race, what do you do in terms of, if you're going to have a primary race variable – I mean, I think that's an issue.
Subgroup data, sample design, again, these were all things that I think, you know, are typical survey issues but just very specific when you have such small groups.
Problems in tabulating, analyzing, interpreting data on race and ethnicity, again, that has to do with size, it has to do with some of the bridging issues also. If you change how data has been collected, the bridging process from going to the way it was collected to the new way that it's collected. And I really have to say NCHS has done a lot of work on this. It has done – if you look in the field, I think it and NORC and a couple of other people have really been doing work. But it's done the lion's share of trying to insure that we're going to be able to bridge data.
The race question in terms of Hispanics, this is still there. I'm, for example, out in the field right now with a 4,000-person survey that's a follow-back on the California Health Interview Survey, and when you ask Hispanics about their race, they're like, I already told you – which we asked them about their ethnicity. And then when you want them to think about – well, no, but now, what's your race, even sometimes when you give them categories, there's kind of this “Hamm” that – a little bit of a struggle in terms of understanding that. So there still needs to be work on that.
And then there's the issue which if Peggy were here, she always makes sure that we think about some of the state issues, and that is the burden for states in collecting race and ethnicity data. I mean, ‘cause for them, there's a desire to collect the data in very fine detail because they have to service their population, but at the same time there is a burden in terms of doing that.
So should we stop at this section?
MR. SCANLON: Just one question, Vickie. Isn't – there's a similar burden on anyone whose main job isn't data collection – medical providers, health plans, everyone else.
DR. MAYS: Oh, I know.
MR. SCANLON: Isn't it more general? It's a burden value kind of an equation. It's not just states.
DR. MAYS: Yes.
MR. SCANLON: So I just wonder if you –
DR. MAYS: No, I think that's a good point, and it's probably one where if we're going to broaden this out that it's useful for us to maybe just make some comment about the burden case and to give some examples, because I think that that's what comes up quite frequently as a potential barrier.
MR. SCANLON: Health plans and providers?
DR. MAYS: Yes, yes – no, I think that's a really good point.
DR. COHN: Very good. Yes, Judy, and then Don.
MS. BEREK: Also, not just a burden issue but an accuracy issue. When I worked in the Department of Social Services and we would try to add things to the welfare enrollment form because we wanted to learn something, the front line clerks would basically say, if it's not needed to calculate a grant level, don't ever expect it to be correct. Yes, you can put 9,000 things on, but we're not going to pay attention to it.
And so I think that's sort of an important thing to think about as we add things on.
DR. MAYS: That's also an issue where there is the fluidity, too, in the sense of you may do well at collecting, but if the person is changing, you also don't – you know, you go back and you say, well, is – was it a collection problem or was it a, you know, person identified problem, so I think that's something we're going to see over time what's going to happen in terms of that, but I agree.
I think somebody else –
DR. COHN: Don?
DR. STEINWACHS: The distinction between Hispanic and Latino, are those supposed to mean two different groups, and if you sort of remove the European part of that, or is it supposedly interchangeable?
DR. MAYS: Now, I live in California and it's like -- I have pushed “Hispanic” for the report, but it's like in California I usually don't say “Hispanic.”
DR. COHN: Yes.
DR. STEINWACHS: And I thought maybe people were trying to drive a distinction.
DR. COHN: Yes, and maybe this – we're moving down to a depth where we can –
DR. STEINWACHS: Gee, there, Simon, you won't want me to learn after all –
[Laughter.]