[This Transcript is Unedited]
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Agenda Item: Call to Order, Welcome, Review of Agenda
DR. CARR: Welcome. I give you a very warm welcome to this very warm day here in Washington, day one of the National Committee on Vital and Health Statistics. I am Justine Carr, Steward Health Care, chair of the committee. No conflicts.
MR. SCANLON: Good morning, everyone. I'm Jim Scanlon, executive staff director for the full committee and Deputy Assistant Secretary for Planning and Evaluation at HHS.
MS. MILAM: Good morning. Sallie Milam, with the West Virginia Health Care Authority, member of the full committee, co-chair with Larry of Population Health. No conflicts.
DR. GREEN: Larry Green, University of Colorado, member of the committee, co-chair with Sallie. No conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee. No conflicts.
DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, member of the full committee. No conflicts.
MR. BURKE: Jack Burke, Harvard Pilgrim Health Care in Boston, member of the full committee, member of the Population Subcommittee, member of the Privacy Subcommittee. No conflicts.
MR. TAGALICOD: Robert Tagalicod, director, Office of E-Health Standards and Services at CMS and the CMS liaison.
MS. BUENNING: Denise Buenning, acting deputy director, Office of E-Health Standards and Services, CMS.
MS. PRITTS: Joy Pritts, chief privacy officer, Office of the National Coordinator for Health Information Technology, HHS.
MS. DOO: Lorraine Doo, Office of E-Health Standards and Services, and lead staff to the Standards Subcommittee.
DR. SCANLON: Bill Scanlon, National Health Policy Forum, member of the committee and member of the Standards Subcommittee. No conflict.
DR. MAYS: Vickie Mays, University of California Los Angeles, member of the full committee and member of Population and Privacy. No conflict.
MS. KLOSS: Linda Kloss, health information management consultant, member of the committee, co-chair of the Privacy Committee. No conflicts.
DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of the committee. No conflicts.
MR. SOONTHORNSIMA: Ob Soonthornsima, Blue Cross and Blue Shield of Louisiana, member of the committee, co-chair of the Standards Committee. No conflict.
DR. SUAREZ: Good morning, everyone. My name is Walter Suarez. I'm a member of the committee and co-chair of the Standards Subcommittee. No conflict.
MS. GREENBERG: Good morning. I'm Marjorie Greenberg, from the National Center for Health Statistics, CDC, and executive secretary to the committee.
MS. SQUIRE: Marietta Squire, staff to the committee.
MS. JONES: Katherine Jones, CDC, National Center for Health Statistics, and staff to the committee.
MS. KHAN: Hetty Khan, National Center for Health Statistics, CDC, staff to the Subcommittee on Privacy.
MS. COOPER: Nicole Cooper, staff to the committee.
DR. LAZARUS: Steve Lazarus, Boundary Information Group, representing CAQH CORE.
MS. FOERSTER: Rachel Foerster, Boundary Information Group, representing CAQH CORE.
MS. QUEEN: Susan Queen, from ASPE, lead staff to the Subcommittee on Population.
MR. QUINN: Matt Quinn, from NIST, lead staff to the Quality Subcommittee.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, committee staff.
MS. KANAAN: Susan Kanaan, writer for the committee.
MS. THOMASHAUER: Robin Thomashauer, CAQH.
MS. LOHSE: Gwen Lohse, CAQH.
MS. THORNTON: Jeanette Thornton, America's Health Insurance Plans.
MS. BANKS: Tammy Banks, American Medical Association.
MR. BIZZARO: Tom Bizzaro, First Databank.
MS. WEIKER: Margaret Weiker, Hewlett Packard, representing ASC X12.
MR. WANG: Derek Wang, Social Security Administration.
MR. DECARLO: Mike DeCarlo, Blue Cross and Blue Shield Association.
MR. CROWLEY: Kenyon Crowley, Center for Health Information & Decision Systems, University of Maryland, Working Group on Data Access and Use.
DR. CARR: With that, I just want to make one opening comment.
We have been extremely busy lately, over the last couple of weeks. We had an intervening meeting in May and generated a letter from that. I know we got feedback from a number of sources about the concern that there's a tradeoff. Meeting the timeline has a tradeoff of foreshortening some of our usual processes. We heard that loud and clear. I want to reiterate our commitment to collaboration and transparency. We're going to take time this afternoon -- I think it's identified as talking about the claims attachment, but I think we're going to broaden it to talk about, in general, how we manage the competing demands in the available time and how we prioritize. So we'll have some discussion this afternoon.
We'll also be teeing up an Executive Subcommittee retreat for a day one time this summer to help us continue to think about how we meet our expectations and maintain our tradition of openness, collaboration, transparency.
With that, let me turn it over to Jim.
Agenda Item: Updates from the Department
MR. SCANLON: Thank you, Justine. Good morning, everyone.
Let me bring everyone up to date with a number of developments in the data policy area at HHS. A number of exciting things are happening, particularly in the area of our Health Data Initiative, which we started about two years ago.
But first I'll plow a little bit over previous ground. In the area of policy and planning, I think I mentioned previously that we updated our strategic plan with four overall goals related to transforming health care, prevention, a number of other areas. I think I have shared material with you. Maybe we'll just make it a standard part of the briefing book. Of course, we would be willing to brief the full committee on any of those, on the strategic plan generally for HHS.
In addition, we have strategic plans in specific areas. Let me just mention a few of them:
In addition, we have initiatives related to global health, on the human services side, early childhood development, as well as health, and two other more recent ones, an Alzheimer's plan and a strategic plan for persons with disabilities.
As I said previously, each of the plans, as a general rule, has to have some goals and has to have some action steps, something you can actually observe that you are doing, and it has to have some measures that indicate how close or how far you are from reaching those goals. So we generally try to have some data and measures as part of each strategy.
Again, we would be happy to brief the full committee or any of the subcommittees on any one of these specific areas as well.
I'm going to talk a little bit now about our data standards from the ACA, our Health System Measurement Project, which we launched about a month ago, a data strategy, which the Data Council was asked to pull together -- I'll provide some of the highlights there -- and then some developments relating to our overall Health Data Initiative, the goal of which, as you will remember, is to make the data that we do have in HHS available more broadly to communities, to patients, to providers, plans -- to everyone -- for choice and for decision making.
Just to remind everyone, one of the sections of the Affordable Care Act -- and I would remind everybody that the Secretary has the authority to do this anyway -- the Act called for the Secretary to adopt and promulgate data-collection standards for race, ethnicity, sex, language, and disability. In essence, these are demographic data items. These were to be standards that would apply when someone is asked to self-identify.
As you'll remember, we went through a process of looking at what standards are used in HHS and other federal surveys now, what is the best practice, what seems to work. We put together some potential models. We took public comment. Then, back in the fall, the Secretary adopted our recommendations, which were developed by the HHS Data Council.
Those standards, which are now available on the HHS website -- we now have data-collection standards for HHS surveys, the surveys that we sponsor relating to those items.
As you all know, we were asked to look, as potential areas for the future, at the whole area of SES, socioeconomic measures, position, and status. We asked the committee here to take a look at -- sort of an environmental scan in terms of what the best thinking and the best practice there now is. I know the committee is working on a letter summarizing the results from the workshop.
I shouldn't mention the word "workshop" anymore. We're forbidden to have conferences or workshops or to send people to international meetings.
So we're looking forward to that.
At the same time, though, HHS leadership asked us to look at those same data items -- sex, race, ethnicity, language, and disability -- for data standards that would apply to administrative data. Remember, with surveys and research, you have a fair amount of flexibility, because you control the content of the interview or whatever it might be, and you generally have the person in front of you or some knowledge about the person in front of you to get the information. With administrative data, there are many fewer degrees of freedom. No one is interested in adding a lot items to any administrative forms or processes. So here we are looking at what would make sense from current practice, what's being done. First we look at HIPAA, obviously. We look at HL7. We look at where there might be standards in these areas already. We look at standards in terms of the way in which our agencies are already collecting this kind of data in their own administrative data systems -- so Medicare claims, Medicaid claims, Ryan White claims data, things like that, surveillance data as well.
Surveillance data sort of falls between the survey research side and the administrative side. It just depends on what exactly the focus is.
At any rate, we'll be looking at whether there are standards for these data items that we can recommend to the Secretary to standardize these basically demographic items across our administrative data systems as well.
I think I mentioned previously that we're trying to make some headway on getting better data on vulnerable populations. One of the areas is the LGBT population. We already have under way at the National Center for Health Statistics a plan to -- and we're testing these now, in the third phase of testing -- ask questions about sexual orientation in the National Health Interview Survey. If this works out, it would be included in the January cycle of the survey. It's something that a lot of folks have been asking HHS to do for quite a while.
Let me turn to our Health System Measurement Project. This I think I gave you previously. The project is now available on the HHS website. In this case the focus is ten domains or content areas that folks would want to look at in terms of health systems change, not just health reform, but looking at system performance and change in the US health system over time. We have ten overall content domains, which I'll read to you quickly, and then we have about five to ten indicators -- these were consensus indicators in HHS -- in each of those domains. You would be looking at changes every year or every six months in terms of how the US health system is moving.
The domain areas -- and I can give you more detail. We can brief the committee. In fact, it's available on our ASPE website.
For each of those areas, we had a consensus process to try to develop indicators. We will look at them as they change, probably annually, but in some cases -- health insurance coverage, for example -- the information becomes available semiannually, and we'll be looking at those as well.
Again, I'll give the URL for the initiative. It's available.
We're managing it out of our office in ASPE now. We're going to let it go for a while with these measures, but we will be looking down the road to what additional measures people would like to see and whether there are other domains. We finally converted this from an internal system to an outward-looking system, and I think there's a lot of interest now.
This is not a policy website, by the way. We're not trying to explain changes. We're just trying to describe the changes. When folks are looking for the major indicators, it's not quite as nice as the economic indicators. But when you are looking for indicators, at least there is one place to start.
For each of the data sources, there is a link to the data source, the questionnaires, the original data. You can call up maps. You can call up various breakdowns -- race, ethnicity, and so on. If we have the data, we have made it available that way, so you can build your own tables and build your own maps -- again, part of an initiative to get our data out.
We also put together a separate guide, available on the HHS website, to our HHS surveys and major data systems, probably two dozen major data systems. We have more individual systems, but these are the ones that folks normally look to, major surveys, the Medicare data, the Medicaid data, things like that. It's a data source that we have already been making available publicly. We have descriptions. We have, in general, the methodology, the questionnaires, and related information about that.
Let me say a couple of words about our HHS data strategy.
Leadership in HHS asked the Data Council to look at the portfolio of all of the major data systems in HHS and to take a look critically and to look at the obvious things, like efficiencies and coordination and so on -- but to look at how well we're doing with meeting gaps that everyone has identified, including future data gaps, and to also look at whether we are benefiting from the most recent technology in these areas in terms of data-collection strategy and so on. Are there techniques, are there practices and resources that are available that HHS could take advantage of to speed the data up, improve the quality, and all that in terms of cost savings as well? I'll describe a little bit of what we found and recommended there.
The other area was to ask, how can we align and integrate -- at least align -- these various data resources, forces, and streams as we look forward? Remember, at HIPAA we call it convergence. Now we're referring to it as alignment. Basically, it's the idea that we have our population surveys and surveillance, we have what is looking like less and less administrative data supporting health insurance and so on, and then we have the potential of EHRs adopted on a wide scale. Again, this is beyond the islands of excellence now. This really would have to reach a fairly critical and broad-scale level.
As long as the thought is standardized data where quality can be ensured, how do we bring these forces together? Are there ways that we could begin, not to wait until it happens and then say, what shall we do, but to take steps now in terms of pilot studies, data standards, various policies and principles, so that we're converging and aligning these systems so that as they do become available, they are producing data not only for their initial purpose, but for data secondary uses as well. Can we assure that they are more than just the sum of their parts and we're not conflicting?
We have a number of projects that the Data Council and others recommended there. The nature of those is to assume certain things -- what would you have to do, for example, for the provider surveys in HHS to have them be able to rely more systematically on EHRs? You couldn't do that now. It's just not in large enough scale, and I'm not sure what you would ask to be reported out.
Secondly, for public health reporting, for example, what are the pilot studies you have to do to try it out and actually work? Could you find some health plans that have EHRs that would be willing to -- where we could do some pilot testing -- and this is sort of where we are headed -- to look at what the plans now contain in EHRs and to what extent they meet the requirements of the surveys in public health and research as well? So we're heading those lines as well.
On the research and data side, it actually was very interesting. As a result of the look we had, we're going to be testing out the possibility of some Web surveys and Web panels as augmentation for some of our surveys. Even for the Health Interview Survey, we're working now with the National Center for Health Statistics on the possibility of a Web version of the Health Interview Survey.
Again, these have to be probability-based. Otherwise, it's really not that useful. You have to assure that it's a probability sample, number one, before you make estimates. But then it becomes quite a nice tool for quick turnaround and to answer questions almost on an on-demand basis.
There are some examples in the industry. The worry is that they are not probability-based and they have very low response rates. Again, you don't know what you have at the end of it.
It's one thing for a company to do this. It's different if you have to do it for official health statistics, because then it's not just a commercial product.
We also have several initiatives under way to speed up the release of HHS data. Almost every one of our major surveys now has an early-release program. For the Health Interview Survey, as I think you know, we have the early-release program. We are releasing six-month data on a more or less quarterly basis, on about half a dozen indicators, including health insurance coverage. The provider surveys we have now moved up to where we have cut the time from field data collection to what used to be more than a year and now it's less than a year. We have asked almost every one of our surveys -- MEPS and others -- to try to speed this up.
On the administrative data side as well, there are several initiatives with the Medicaid program to, rather than wait for the last state to get their last records in before you start releasing the data, start making releases earlier. There are several versions now of the MAX, Mini-MAX and Beta-MAX, that provide this data on a faster basis as it comes in. You can often do a fair amount of analysis. All you do is cut it off at that point. You don't have to wait.
So very nice demonstrations under way.
We were asked to look also at commercial data resources and nontraditional data sources. Many of our agencies purchase data from vendors who have developed data sources over the years. IMS America, for example, has a lot of data on retail pharmacy claims. Thomson Reuters and other places have all-payer claims data. Nielsen has data on consumer behavior and so on. Many of our agencies have access to this.
We're trying to get a sense of what agencies have, what they are using it for, and whether there is some way we can share the resources there. So we'll be looking at that and making some recommendations.
At any rate, I think everyone is excited about looking forward now on applying some of the latest technology, Web surveys and so on, to our surveys and data collection.
Just a few words on integration and alignment. Obviously, much of this starts with data standards. We're trying to get some principles where people agree to use data standards. If you are developing a new data system, we really just insist that you turn to well-performing data standards and not develop a one-off kind of approach each time.
Administrative and claims data: As I mentioned previously, we have good resources with Medicare and Medicaid. We in ASPE have a project under way where we're trying to pull together a resource for all-payer claims. This would be everybody other than Medicare and Medicaid, which has always been difficult. There are companies that focus on this based on their clients' data, but it's hard to get access to a large enough and representative enough sample. It turns out to be much more difficult than anyone imagine.
I remember we had meetings and everyone said, oh, yes, the Society of Actuaries will be happy to do that for you. It turns out -- and it's not a technical issue. It's just very difficult in terms of ownership, standardization, what the model is for pulling this information together, for what purposes. Now it turns out that the industry is actually -- the Blues, for example, did have an initiative where they pulled all together their data. There are some other places that are pulling data as well. But it's very tricky, and you have to decide what sort of model would really work best.
We have a number of pilots relating to electronic health records, public health, survey data, and so on. We're going to try to pull much of this together.
We'll be spending more time on this today, but remember about two years ago, with our open government plan, we created an emphasis -- we called it our Health Data Initiative, but the initiative is really the part of emphasizing making the data available in an easier form, in an easier, accessible form, and advertising the data that we have. I'm not sure we have more data. What we wanted to do was get the data that we did have available. We do have a few additional sources.
There are a number of initiatives here that fall under that rubric. Several of you, I think, attended the Health Data Initiative Forum in early June, called The Health Datapalooza, which we cosponsor along with some others. At any rate, the idea there is to bring innovators and developers together with our data experts to make our data more available and to promote useful, innovative applications of our HHS data. There were a number of new applications there. I think Todd, when he is here tomorrow, will talk a bit more about that.
We have updated and expanded our Health Indicators Warehouse. This is where we put our HHS indicator-type data. We have probably 1,100 indicators there. Anyone who wants to use that data, it's available for them in machine-readable form for applications.
As I indicated, we just a month ago updated our HHS open government plan again with an emphasis on data transparency and availability.
Finally, we'll be starting today a working group under the auspices of the full committee here on promoting data access and use. We have the first meeting of that workgroup today.
Let me stop there and see if there are questions.
DR. COHEN: A couple questions. Very exciting stuff. Thanks, Jim, for updating us.
Are there timelines that the Secretary has for adopting standards around SES data for administrative claims and surveillance systems?
That's my first question.
MR. SCANLON: The first emphasis, the way the statute was written, was on surveys. There was no statutory deadline, but it was a very high priority. We really had those standards ready within about a 90-day period. But it took a while to go through the public comment process and the review process. But there was no date in the statute.
On additional SES items for surveys and research, that was the area where, when we sought public comment, since the Secretary had the authority to adopt standards in additional areas, we asked, what would be the most important area you would recommend? Clearly, by far, most people were interested in SES. I think it was more in terms of socioeconomic determinants of health. It wasn't so much demographic data in health. I think it was more social determinants. Nevertheless, they were measures of SES.
We'll take a look at what the committee is recommending and found. We can move as quickly as the state of the science allows.
On demographic data items, these six items for administrative data, we knew when we focused on surveys that there was an equal interest in the administrative data. This is part of alignment and convergence as well. We formed a workgroup, and we're now meeting every other week. Within HHS, we're looking at what standards exist that we might consider -- all the X12 and HL7 and other standards. We're looking at recommendations from the IOM. We're looking at what kinds of data our administrative data systems are collecting now. That's probably a two-month or more project, to at least get the recommendations there.
DR. COHEN: It would be great to get the committee involved in those discussions. I know there's a lot of confusion at the state and local level around these HHS standards that have already been adopted. People aren't clear how they apply and to what, although I know technically they are only targeting federal survey data collection.
My other question: I know that NCHS is doing testing around GLB questions. What's the status of the listening sessions and progress around collecting transgender data?
MR. SCANLON: There it's tougher. On sexual orientation -- this is the LGB part of LGBT -- we have actually moved along pretty well. NCHS is actually testing those questions in their Health Interview Survey. That is the third large field test that will be coming up shortly. If that works, we'll be including it in January.
On the transgender part of it, as Bruce indicated, we have had two listening sessions with the research community and the community of experts in this area. We have a couple of things going. We're looking at the possibility of including a question in the Behavioral Risk Factor Surveillance System.
But again, until these things are done, they are not -- and in our administrative data, we have a couple of systems that actually have been collecting this already, different ways. We're trying to see if there is a preferred method there as well.
DR. CARR: I think what we are going to plan to do is take one or two more questions and then move on to Rob. Walter and then Vickie. Then I think we'll go on to Rob.
DR. SUAREZ: A quick comment and a question. The comment is to the point Bruce brought up about administrative data and standardization of SES. I think it's important to note that the standardization process for administrative data that we have used in this country, at least through now, follows significantly the standards-development organizations nationally and internationally, like HL7 and X12. One would think that if we were to consider adding new data elements related to socioeconomic indicators, that would be expected to be captured in administrative data. When we saw administrative data, generally we talk about claims and enrollment and all this data. Then it would have to go down the process of standards-development organizations and be incorporated into the actual transactions, which is a very established process.
That's just a point of reference, I guess. Whereas on the survey side the central provider of the survey can decide that we're going to add these two questions here and there, on the administrative side there's a national open, transparent process to do that.
MR. SCANLON: Frankly, in terms of the principles, the first thing you look at is the X12 or the HL7 standards. Remember, these are for the data items, the specific data items -- race, ethnicity, sex, disability, and language. What we're finding is that in X12 there are some items there, and some of the areas are just not covered well.
But that's exactly right. We're looking for what the industry has already decided. We're not interested in developing something entirely new.
DR. SUAREZ: The quick question is about --generally, the perspective traditionally has been to aggregate data, to bring data together in sort of a centralized mechanism and try to create these databases. Now the cloud is sort of a new view of it. But there are new and innovative ways to do some of these data connections. One of them has been developed through the work that the S&I framework of the Office of the National Coordinator is doing, the standards and interoperability framework. It's called Query Health. In the Query Health mode, instead of having a centralized database collecting all the data and putting it into one place so that someone can do some analysis in it, the idea is that you could just fire out queries to multiple sources and allow the gathering of the data, particularly indicators, metrics, measures to be analyzed, through a query.
I just wanted to point that out. I think the traditional way of thinking, that we should bring together all the data in one place, is sort of breaking now.
MR. SCANLON: The focus on the standards is to get it standardized so that you actually have something you can analyze. Again, whether it's centralized or whether it's done locally -- whatever the means of the query or the analysis is -- this is the measurement part of it. This is not the data-collection part of it. But we have had in HHS for a long time now -- it's not just the ONC -- we have examples of query-based models. The FDA has a system, for example, with a number of plans where they can send out a query to health plans. They can ask about adverse effects associated with a specific drug or procedure or so on.
It's not just a model. We actually have examples. It's not as efficient and it's certainly not perfected yet. But it's certainly a model that people are looking at.
DR. CARR: Vickie, quick question. We don't want to shortchange CMS.
DR. MAYS: I think mine are pretty easy.
What comes under vulnerable populations, other than LGBT? Then in terms of the collection of data on language, can we then look forward to some additional languages, surveys actually being launched? Is there any innovation in terms of the estimates of cell phone?
MR. SCANLON: Cell phones? Oh, yes. I'll start with the last one. Every year we collect data on who has cell phones in the Health Interview Survey. Every year we sort of know who has computers, who has cell phones, as the basis for additional survey research.
That's how we are designing the Web survey, by the way. We're looking at findings from the Health Interview Survey about who actually has computers and so on. We have always asked about various cell phones, so we can see that we're not getting biased results.
But the standard for language that we ended up developing, for surveys at any rate -- remember, these standards are a minimum -- what we were encouraged to do, for survey work, now -- the issue seemed to be English proficiency, not the individual language. On the other hand, for clinical work or administrative data, you might need to know the specific language, so we added an expansion where you ask about the specific languages. Spanish by far comes out -- nationally, it's like 80 percent of the time.
For every state, we have the 10 or 20 top languages. We could put that on the website.
DR. CARR: Thank you, Jim. That's great. Very exciting things. I have to say, the first time I knew you were venturing out into commercial was when we were in the Humphrey Building and you said, do you want to see the command center? We went in the command center, and it was CNN.
On to you, Rob.
DR. TAGALICOD: Thank you Justine. Thank you, Jim.
My name is Robert Tagalicod. I'm director for OESS at CMS. I'm here to give the update at CMS. We have a few exciting things that we would like to report back on.
Before I do, I want to apologize to ONC if I'm going to steal some of their thunder. But we're in this together. This is not simply a CMS endeavor. This is both us and all of you folks.
On Tuesday, 6/19, CMS and ONC issued a press release. Essentially, over 100,000 health-care providers have been paid under Medicare and Medicaid EHR incentive programs. Both CMS and ONC have been working hard together. Marilyn Tavenner and Farzad Mostashari of ONC identified three months ago what that target was for the end of calendar year 2012, which is 100,000 providers. We are now beyond that.
We did look at trends. Farzad will know that I'm much more of a conservative person. I like to look at trends and then do it very conservatively. I said, we'll get there by the end of the year. To my surprise -- and I should have yielded to him, because he's much more free with the numbers and identified that we would reach that in the middle of the year. He was right. So I would like to say that we have done that, and we are even surpassing it. By the end of May 2012, we actually gave $5.7 billion in payments. I think Jodi from ONC can talk about the details.
We have limited time, so I'm not going to belabor that talking point. I'll yield to ONC.
I think we are well on our way. We are looking at the industry, the so-called denominator of where we saw hospitals and where we saw ourselves in terms of eligible providers. We're essentially halfway there. Again, Jodi, I'm sure, will go into the details.
Rather than focus on that, I'll turn it over now to Denise to talk to you about our front on admin simp and ICD-10 and 5010.
MS. BUENNING: Thank you.
Let's start out with version 5010, since that is the one that's coming up sooner rather than later. I think you are all aware of some of the discussion from yesterday regarding the challenges that the industry experienced with the implementation of version 5010, so I won't belabor those points. But I will remind everyone that we did extend the enforcement discretion period for version 5010. We did not change the compliance date, but we allowed some of the noncompliant HIPAA transactions to go through until the end of March. In response to industry need, we extended it again to the end of June. Basically, what that meant was that providers, health plans, other HIPAA-covered entities could transact noncompliant HIPAA transactions without fear of a penalty, under our HIPAA enforcement process.
This allowed the providers and the vendors who were having difficulty doing software installations or getting end-to-end testing completed additional time to do so. It allowed us to keep the trains running, so to speak.
That enforcement discretion period is coming to an end on June 30th, at which point we will expect all HIPAA-covered entities to be compliant and to be transacting in version 5010.
With regard to administration simplification, we have a number of initiatives, as I think everybody knows, and some very challenging timelines from Congress with regard to adoption of both standards and operating rules for some of the transactions, as well as a health plan identifier. We talked a little bit about this yesterday. With regard to the HPID, that was part of the proposed rule that we published on April 17. It was also coupled with ICD-10, as well as some changes to the national provider identifier. We have received comments back. We will be preparing a final rule to address the comments that we received. I can tell you, just in general, most of the comments regarding HPID were clarifying in nature. They wanted some more information as to examples of what enumeration would look like. So we will be addressing those in a final rule that we hope to get out very soon.
Other administrative simplification areas we're working on regarding operating rules for the electronic funds transfer and remittance advice standard. That actually was adopted in January of this year. It becomes effective next year. Now, of course, we're working on operating rules to accompany that particular transaction. We have gotten a lot of really great feedback from NCVHS, and we have depended on that, as well as industry and stakeholder comments to craft an interim final rule with comments.
We're working on health plan certification. That's another area that I know is of great interest. That is the requirement that health plans certify by the end of 2013 and then again at the end of 2015 their compliance with some of the standards and operating rules that have been designated in the standard. We are working on that. We're gathering intelligence on that right now in order to craft a regulation. I think what we're hearing from industry right now and what we're working towards is something along the lines of an attestation, something very simple, very clean. Let's make this as easy as possible. I know you have heard that before, but we're certainly going to work in that vein.
Finally, of course, ICD-10. I think we all heard yesterday that we received 565 comments on ICD-10. As we had with the 2008 proposed rule, comments are all over. Some are advocating for staying the course for 2013. Others are saying 2014, which was the proposal that the Secretary put forward in the proposed rule. Some are saying 2015. Some are saying to skip ICD-10 altogether and go to 11. Some are saying to split implementation between PCS and CM, between industry segments.
We're taking all that into consideration. We have categorized all of the comments. Our subject-matter experts have weighed in. We will be going forward with a recommendation to Administrator Tavenner within the next seven to ten days. Of course, because this is an HHS initiative, it will go up to the Secretary level for her review and consideration.
I think that's pretty much, in a nutshell, where we are.
DR. TAGLICOD: I do have one more item. In the Federal Register notice about a couple of weeks ago, I wanted to also share with you the creation of the Office of Enterprise Management. It does change a little bit of our relationship in terms of the Office of E-Health Standards and Services. The Office of Enterprise Management was conceived as a consortium of offices, of which the Office of E-Health Standards and Services is part. What is new to us is not so much what is under our bailiwick, which is 5010, ICD-10, admin simp, and HITECH, but we also consolidated, from an enterprise point of view, the privacy piece at CMS so that there is one group that is overseeing that from an enterprise point of view. When I say enterprise, I don't mean just across CMS. It is working, clearly, with the Department, ASPE, and with ONC and, of course, the Office of Civil Rights, in order to address issues regarding privacy and the use of data.
The three other offices that are part of this consortium, the Office of Enterprise Management, are an existing office, the Office of Project Management and Performance, a new office, the Office of Information Policy and Products and Data, and the Office of Enterprise Business. We would work all together in order to do, as our name indicates, from an enterprise point of view -- and we even say ourselves within CMS that the days of siloing are done. We need to do a better job in terms of -- and I think you have heard the words yesterday and today -- convergence, alignment, coordination, and integration.
Clearly, timing in life is everything. I think we're looking at that coordination and convergence of HITECH, admin simp, 5010, ICD-10, and, of course, quality performance. Our aim is really to reduce the administrative burden, not only to providers and industry writ large, but to ourselves within the Department. There are just a lot of moving parts. The call for a kind of strategic plan that unites all of this or converges everything, with discrete milestones and timeframes and responsibilities, is needed. The creation of this office is to meet that challenge.
I just wanted to let you know that we are looking at a strategic plan. This cannot be done in isolation. We are not going to go to the ivory tower and do that. The whole premise of this office is to do it, again, with public and private partnership.
The other focus -- and it got play yesterday -- is, how can we facilitate better communication and collaboration amongst all the parties? Whether that's payers and providers, as we were discussing yesterday, or just amongst the federal stakeholders, state stakeholders, or industry, I think that's what we're all about. But again, with the Department, with ONC here, that's what we are trying to do better.
I want to reemphasize our commitment to that public and private relationship.
What you can look forward to is that enterprise vision within CMS, within HHS, including ONC and ASPE and others, and with industry. What are we looking towards? It's not just simply the data and the standards. We're looking towards, quite frankly -- and maybe I should frame it as a question, because it's still a question. Are we looking towards 2017 in the new world of payment reform? How do we get there in real time and in a mobile way?
I think the staff within CMS is looking towards that. But again, it's a question. How do we get there -- well, first of all, let's validate that that's the goal. I think all of us, as partners, need to address that. What are the discrete milestones, whether we are talking about testing and ICD-10 or whether we are talking about how we exchange data n this larger forum towards that end?
So we need to have a common understanding. Yesterday's conversation was about readiness. It's more than just ICD-10 readiness. It's readiness writ large. Testing end to end, what does that mean, and the testing environment for these different initiatives? What are some of the realistic milestones?
Again, we want to partner with everyone around the table, clearly with NCVHS, in order to move the agenda forward. I think that's one of the other exciting things that I would like to put out there.
I'm very much, on Myers-Briggs, an ENTJ. I can talk at this level. There are clearly folks who are much more the sensate folks, who will say, I need to know exactly where we're going. We need you folks in order to articulate what that is so that we're much more specific rather than pie-in-the-sky.
That's what we have to report. Thank you.
DR. CARR: That is great. Thanks so much. This is very, very exciting.
Let's hear from ONC.
MS. DANIEL: Thank you very much.
Yes, Rob did steal my thunder, but I'll give a couple more exciting details that go along with it.
Not only did we hit the 100,000 mark, but we actually hit 110,000. That represents one in five of all eligible professionals in the United States. So we're at 20 percent, which is a really exciting place for us to be. This is, in part, due to some of the really hard work that our regional extension centers have done. They are currently working with 133,000 primary care physicians and 10,000 specialists. Among small practice providers in rural areas, there are over 70 percent of those folks that are working with RECs and 74 percent of critical access hospitals are working with RECs. So we're really helping those in some of the more challenging areas to become meaningful users.
With respect to hospitals, there are 2,400 hospitals that have been paid through the EHR incentive programs, through CMS. That's about 48 percent of all eligible hospitals and critical-access hospitals -- so really strong numbers there as well.
That's all I'll do on the meaningful use update and the good news. It's always good to be the bearer of good news. We're glad to be working with CMS in accomplishing that.
I have a bunch of different things to cover. The first and probably most important, beyond the update, is our regulatory efforts. We are actively working, as is CMS, on our meaningful use stage 2 and state-of-certification rules. We received plenty of comments, in the hundreds -- of course, not nearly as many as CMS has. We're working through those and working collaboratively to try to come out with those regulations as soon as possible.
That said, we're already thinking about meaningful use stage 3, even though we're still working on our stage 2 regs. We have been working with our Health ID Policy Committee, thanks in large part to the leadership of Paul Tang, in thinking about stage 3 meaningful use and getting recommendations so that we can start thinking about the policies, the standards, and make sure that we are on track for our stage 3 process. They already had just this past month two hearings in starting to think about stage 3, one on quality measures and quality improvement and a second on patient-generated data. I think those are both going to be two pretty exciting areas. We had great conversations and we will have some interesting insights and recommendations from our committee. So we're looking forward to that.
Last on our regulatory front is our nationwide health information network governance RFI that is currently in an open comment period. We extended the comment period, we only had a 30-day comment period. Folks asked for more time, so we extended it by a couple of weeks. That closes, I think, June 29. Still time to get in your comments.
We had originally planned to put out an NPRM, a notice of proposed rulemaking, but decided to do an RFI because we felt we really needed some more input in thinking about the best way to do this, since it is such new ground and it is such a new area and such developing area and an innovative area. The HITECH Act called for ONC to establish a governance mechanism for a nationwide health information network, which is what this is trying to implement.
In thinking about this, there are a couple of things that I'll just highlight from our RFI. One, our goal is trying to get to trusted exchange, a pathway for trusted health information exchange. What we suggest in our RFI is a voluntary program, not a mandatory program. It doesn't mean that information can't be exchanged in other ways. It just means that this is a trusted way for exchanging that information. Folks who are trying to share information with those whom they don't have a relationship with, a trusted relationship with, have a channel for doing that in a way that meets certain requirements and standards.
We are focused on the entities that facilitate electronic health information exchange and looking at mechanisms for some rules of the road -- we're calling them conditions for trust exchange -- for those players who are facilitating electronic health information exchange.
We also talked about a validation process to validate entities against those conditions. We talk about a standards-classification process for identifying standards and different phases of standards, what's sort of ready for national standards, and also talking about emerging and developing standards.
Once we get in the comments -- and we have had a lot of rich discussions from our Health IT Policy Committee and our Health IT Standards Committee, so I expect that we'll get lots of comments and lots of very substantive, thoughtful input from folks out in the field -- we will process those. Our goal is to then turn that into a notice of proposed rulemaking as soon as we can. It would definitely be after our standards and certification rules. We're trying to get those fast-tracked to meet timelines. We will be working feverishly over the summer. We are definitely going to be the "Office of No Summer," for ONC we'll change the "C" to an "S" -- as we're working on both the standards rule and a governance proposed rule.
A couple of other topics I want to touch on. We are working a lot in the areas of safety and usability. We commissioned, I'm sure all of you know, an Institute of Medicine report on health IT and safety, which came out at the end of last year. They called on ONC to develop a health IT safety surveillance and action plan. We have been working a lot on trying to tease that out and figure out what we can do in this space, aligned with the recommendations we heard from IOM. We said we would put that out within the year. The report came out in early November last year. You can figure out the timeline from there. Sometime between now and early November, we will put out a plan.
One of the things that IOM identified as an important issue that was aligned with safety was usability. We have also been looking a lot at usability. We worked collaborative with NIST, who did a workshop bringing together vendors and usability experts to talk about these issues. We also refer to user-centered design and use of good manufacturing practices in our standards NPRM. We understand the importance of usability on safety and trying to figure out how we can improve usability of the products, both to make them easier for providers to use and, even more importantly, to address safety concerns.
With respect to our S&I framework activity, we presented an update at our Standards Committee meeting yesterday. Doug Fridsma, our director of -- he has a new title now. We have had a reorganization. He is our former director of standards and interoperability. He's now chief science officer or something like that.
We are committed to enabling rapid standards development. We do have authority and responsibility to support standards and certification criteria development and adoption now and in the future. The S&I framework initiative was funded with ARRA funds. We are looking at how to continue our support and coordination around key initiatives in this important space even as those funds are used and not necessarily renewed. We're looking at how we can use our current dollars to do that.
We just kicked off a Health eDecisions initiative, which is a CDS effort, just in the last week. The goal is to take clinical practice guidelines and put them in common standard formats that can be shared and consumed by electronic health records in order to make CDS incorporation of guidelines easier by EHRs.
We're working hard on many other S&I initiatives. A couple of the key ones that folks seem to be very interested in are lab results and lab-order interface. We also have been working on longitudinal coordination of care and coordination of long-term post-acute care.
In the area of non-eligible professionals, we continue to hear from our non-eligible professionals and we continue to try to support efforts to bring them in with respect to health IT and health information exchange, despite their not being eligible for incentive payments. The two particular areas that we have been focused on are LCPAC, the long-term post-acute care folks, and behavioral health.
With respect to long-term post-acute care, we did have a roundtable about a month and a half ago, and there was a white paper that came out with that. We're looking at what the next steps are in working with the long-term post-acute care community. We have some state challenge efforts and then, of course, the S&I initiatives.
With respect to behavioral health, we have a lot of work that has been done now on behavioral health quality measures. We are going to similarly be doing a roundtable on behavioral health and the incorporation of behavioral health in primary care, in late July.
My last topic is on consumer e-health. This is really exciting. There are some of us who have been around for some time in ONC and have been articulating a need for focusing on consumer e-health and using health IT for consumer engagement. It has not been the number-one priority since early in the ONC days. What's really exciting is that it has become a priority in a very quick period of time over the last year, to the extent that we did just do this reorganization and we created a new Office for Consumer eHealth. We will be doing a national search for the director. Lygeia Ricciardi is now the acting director.
We're coming up on the anniversary of the launch of our consumer e-health program, which is September. We will have an anniversary of our launch event in mid-September to talk about progress and some of the new things coming down the pike. So keep an eye out for that.
Our pledge program now has over 375 pledges. We highlighted progress at the HGI. There was actually a consumer track. This was the first time that we had a consumer track at HGI. That was more evidence of this really becoming part of the national dialogue on health IT.
We have a series of activities that either have been kicked off or we have had some meetings that are kicking off some new activities. We have a cancer care initiative, which is taking a focused-use case for engaging consumers and families around cancer and cancer care. We are collaborating with the state of Texas and some providers in the state of Texas. Our goal is to have a pilot and an Apps challenge in this space. We just recently had a roundtable with NCI and eHI on informing the research agenda on patient engagement with health IT for cancer.
So we have kind of a confluence of efforts with respect to use of health IT for consumer engagement and cancer care.
We had a patient access summit at the White House, where we brought folks together from the standards and technical world along with the patients to talk about how to improve patient access to data. There were a couple of things that were highlighted as next steps. One was to work on an auto blue button. Folks, I'm assuming, know about the blue button efforts for download of patient information. The goal is to make that come alive a little bit more and make an auto blue button and put some standards around that as well. There was a lot of discussion as well on patient ID and authentication with respect to patient access to information.
We launched a blue button challenge, together with the VA, to challenge developers to build on the current blue button feature that allows patients to download their health information and share it with health-care providers and caregivers. The challenge requires the development of a tool that will help individuals use that health information and combine it with other types of health information, like cost data, comparative health data, et cetera, to help patients better understand their own health status and make informed decisions with respect to their health care -- trying to, again, make that data come alive and be more useful and actionable once folks actually have access to the data.
Lastly, we have been focusing on how to help consumers better understand health IT, the value of health IT, and ways that they can use technology to support their own health and health care. We have a health IT animation that will be coming live very soon. We actually did a preview at HGI, but it's not quite ready for primetime. Folks who were there got to see it.
We're trying to figure out creative ways to get consumers to both understand health IT and understand why their doctors might have an electronic health record in their office and how it might be valuable to them and how it can help them engage and interact and relate with their clinicians.
Lastly, we have been doing a series of video challenges, where we're getting patients and consumers to tell their own stories of how they are using health IT to manage their own health and health care. We have done two of these so far. The first one was a Healthy New Year Video Challenge. We have some videos up on our website. The second was a Blood Pressure Video Challenge. There will be a few more over the course of the year. We're really looking at how we can get others to be telling their stories so that it's more real people talking to real people rather than us talking to them about the value we see in all of these efforts.
Thank you.
DR. CARR: What I would like to do is give Joy a chance to do your presentation. Then we'll take questions.
MS. PRITTS: Thank you.
I am going to start, before I go through my slide show, to talk a little bit about some of the privacy and security issues in meaningful use and governance, just to dive into the privacy and security elements a little bit more.
In meaningful use stage 1, there was a requirement that providers conduct a security risk analysis, which, you all know, is currently required under the HIPAA security rule and has been for years. This might seem redundant, but I will assure you, it has had an enormous impact. As a practical matter, it has alerted people that they should have been doing something for quite a while. The response we have received on this particular issue has been -- I don't know what adjective to use -- appalling, but also encouraging that people actually know now that they need to be doing this when they are installing their electronic health record and on a regular basis.
We are also attempting to ensure that security is as easy for the providers as possible. This is one of our goals. We understand that health-care providers do not want to become health IT specialists. One of our goals is to try to drive some of the security into the electronic health record itself, or electronic health record systems, to alleviate some of that burden on the providers. There are some security functionalities that were built into the certification criteria for stage 1 and are being proposed for stage 2.
With respect to the governance request for information that Jodi was referencing, a lot of the conditions for trusted exchange, of course, revolve around privacy and security. In the security area in particular, our view on that is that these large organizations that are going to be exchanging a vast amount of health information should be adhering to somewhat similar standards. The security rule itself is flexible and scalable, which is necessary when you're dealing with a huge range of providers and other entities sharing health information. Yet at a certain point you look at entities that are fairly similarly situated, which is what we are looking at governing with this rule, and the proposal is that they should be adhering to somewhat similar standards as they are going forward.
I'm going to start with some of the privacy and security policy recommendations that you might have heard or seen sometime in the past and give you an update on how some of those have been moving along. In particular, we issued in March of this year a state health information exchange privacy and security program information notice, which gives guidance to our grantees, our recipients of federal funds, on how we think they should be proceeding and looking forward on some of these key privacy and security issues. They incorporate some recommendations that were made by this committee, as well as the HIT Policy Committee in the past, particularly with respect to informed choice to participate in this query exchange type of health information exchange and strong provider authentication requirements.
There is a link there if you are interested in reading the entire PIN. It is publicly available. If you use a Google search of "state program information notice," it comes up right away. That's probably the easiest way to find it rather than trying to check out that link. It's really kind of long.
We are also working, on a big-policy level, with the administration on the National Strategy for Trusted Identities in Cyberspace, also known as NSTIC, for those of you who have not heard this particular government acronym yet. It is essentially -- I think a kind of crude way of putting it is that it's almost like one single sign-on, but on a very large scale. The idea is that providers and individuals should be able to get ID-proofed once from a verifiable source and be able to use the credential that they obtain in multiple settings. This is a priority administrative initiative. It is being run out of NIH primarily. We are working very closely with them. We are having a hearing with the Privacy and Security Tiger Team on July 11. That will be looking at this issue of provider ID proofing from a provider perspective. Then we will be taking the patient perspective a little bit later in the summer.
The issues are very distinct. The challenges are a little different. So we concluded that it would be necessary to have two separate hearings on that.
In the policy arena, where we coordinate with our other divisions within HHS -- some of them aren't here for me to steal their thunder, so I will just put them in a good light -- the HITECH modifications to HIPAA -- the final rule went over to OMB on March 24, 2012. As a general rule, OMB has 90 days to act on that. We can all do the math as to when we might think that these might come out this year.
Some of the key provisions in here: This rule will finalize the break notification rule. Probably the largest impact on the scope of HIPAA, I think, is that it extends the use of disclosure provisions of the HIPAA privacy rule to business associates, as well as most of the requirements of the HIPAA security rule. This is really a widening of the impact of HIPAA and the enforcement ability of the Office for Civil Rights
We have been working very closely with CMS over the last year, I would say, in a very expedited way, on a lot of the Affordable Care Act rules that are coming out that are establishing these new entities that will enable us to do more analysis of health information and more sharing of health information, holding providers more accountable and also enabling individuals to obtain their health insurance.
I'll run through these very quickly. The accountable care organizations -- the final rule that established them sets out that they may be business associates, but it also says that individuals may opt out of having certain identifiable information shared between some of the different providers. There are definitely privacy provisions that have been baked into this.
In addition, the final rule was issued on the availability of Medicare data for performance measurement of providers. This is the rule that creates these things that are being called qualified entities. Some of these exist now, but this is formally giving them a way to access more CMS data. They are not considered business associates of CMS because they are not performing this function on behalf of CMS. But they must have a rigorous data privacy and security program in order to qualify to receive the Medicare data and they must sign a very stringent data-use agreement.
There's also a final rule establishing the health insurance exchanges, which are different from the health information exchanges. These are the exchanges where individuals will be able to obtain health insurance at the state level if they are not insured through a group program. There are baked into these rules requirements that the state health insurance exchanges must establish and implement privacy and security standards that are consistent with fair information practice principles. These entities are going to be exchanging information from a number of different resources that have a number of different types of privacy and security protections already in place, including the IRS and SSA. The requirements on these have to be fairly high-level in order to accommodate all of those different paradigms that already exist.
In addition to all of these policy initiatives, I would say, that are going on, I would also like to give you a little bit of a snapshot into some of the research and internal activities that my office, the Office of the Chief Privacy Officer, is undertaking. When you see these, you will see that these are also tied to a lot of the recommendations that have come out of this committee in the past and the HIT Policy Committee. I will go through these very quickly, given the time.
The first one is the Data Segmentation for Privacy Initiative. We used to call this masking of data. What this is intended to do is to look at and assess standards for sharing part of a medical record, but not all of the medical record. It is not intended to create new policy. It is intended to help facilitate the electronic implementation of existing laws, such as those that apply to substance and alcohol abuse-related information for which there are already very stringent standards.
This project is in process. It's moving quite rapidly. It is to be wrapped up this September. It is, again, focused on the standards element and looking at some of the standards for metadata tagging that were recommended by the Standards Committee, I believe, last year.
In addition, we have what we're calling the eConsent Trial, which is a pilot project which is focusing on some of this meaningful choice. The Policy Committee and, I believe, this committee in the past have recommended that individuals need to know how their information is being exchanged. It can't just be, here, sign this document. Having heard those recommendations, we also heard from a lot of providers saying, you're asking us to do a whole lot here. This project is designed to find some alternative ways, other than just a face-to-face with the provider, of potentially helping educate individuals and assuring that they really do understand what their choices are. This is going to be looking at things such as putting information on tablets or other forums to educate individuals. It also has definite metrics involved in it to measure whether the individual actually understood what it was that they agreed to and whether they find this method of education to be beneficial.
That project is pretty much at the mid-mark now. All of it will be concluded in March of next year.
We've also designed what we call our mobile health portfolio. It has a lot of different components in it. The reason that we have focused on mobile health is that I think anybody who has been reading the news has seen that the adoption of some of this technology went from pretty flat about a year and a half ago to just skyrocketing recently. There are also a lot of surveys that have been done that have showed that although the use is skyrocketing, the attention to security is not keeping pace. We have a number of different projects that are ongoing in this area.
The first among those is working with OCR to develop a set of good practices for ensuring security with mobile health technology. We had a roundtable, and we are conducting other information gathering. We also had a project where we tested smartphones and tablets out of the box to look at the security that was built in. The second part of that will be showing individuals very basically how you can add more security by doing manual configuration of these devices.
The education materials here will be in various formats, including short videos and things of that nature. We have heard very strongly from the community, the provider community that we work with, that they do not want any more PDF products. They want other things. That's how they learn, and so we're trying to accommodate them.
This project is well under way and should be concluded, I think, October 1, 2012, the end of this fiscal year.
As another part of this mobile health portfolio, we also have a consumer attitudes survey. This was developed out of the Text4Health Taskforce, which requested that we look at these aspects for them. We are working with other divisions in HHS to help them answer some of the key questions they have with their projects.
This is particularly looking at text messaging, email, and Skype, and other uses of apps from the consumer perspective, and how they feel. There is a certain tradeoff that individuals are willing to make with respect to security versus ease of use and things of that nature, and looking at some potential safeguards for this information that are easily usable. That also has a deadline of this year.
In addition, ONC has funded the SHARPS project, which is Strategic Healthcare IT Advanced Research Projects on Security. With our reorganization, these have been moved into the Office of the Chief Privacy Officer to oversee. Two of the issues that they are looking at in particular are the security of implantable medical devices and consumer attitudes regarding privacy of remote monitoring devices, such as wristbands and things of that sort that measure your heartbeat.
You can see that we are getting a pretty good view of the whole sphere through a lot of different mechanisms here.
We also have as one of our big metrics in our strategic plan -- all of HHS has to have metrics now -- one of ours is trying to measure consumer trust of privacy and security over time as adoption increases. We have a survey that will be fielded this year. It is pretty close to being approved. The idea here is that we are going to be looking at this for the next four or five years to see how consumer attitudes are changing about privacy and security over time as implementation really goes live.
That's the end.
DR. CARR: Tremendously productive, exciting, cutting-edge stuff across the board, all of you. Really, this is one of the most exciting presentations we have had from the various departments.
We have time for a couple of questions. I see Larry and Walter.
DR. GREEN: Wow. Amazing leadership.
Question: Of what use is NCVHS to you?
DR. BUENNING: NCVHS is of tremendous use to OESS and CMS in particular, in that it provides the neutral and level forum for the exchange of information that's really critical to us in the formulation of not only policy, but also our regulations. I know that all of you read our regulations very carefully, and I know that all of you will recognize that oftentimes, number one, NCVHS is required statutorily to advise the Secretary on recommendations that we use in the formulation of our regulations. Number two, it provides a vast amount of subject-matter expertise that we bring to bear.
So we very much value these forums, as well as the individual subcommittees that form the foundation of the NCVHS. We think it's absolutely invaluable.
DR. CARR: Let's hear from all of you, because I think that's a critical question. Larry, thank you for asking it.
DR. TAGALICOD: More than the reiteration of what Denise has said, NCVHS is seen as the honest broker. This is where the realpolitik of it is. This is not a plus or a minus or a bad or a good. Entities, stakeholders have their agenda, and they should. I think this is the convening place -- and I had in my head to say, the great convener, the great integrator -- in order to help do that.
I think yesterday was very eye-opening. I think I need to attend those more often and come earlier. It was a good place to hear certain things and where people brought things together for us to consider. If you saw any of the staff that were there, including myself, we were taking profuse notes. Then we were having these offline conversations over dinner or breakfast this morning going, how could we do this better, and how do we do this better with NCVHS, with all the partners around the table?
That's a further elucidation of what we think.
MS. DANIEL: It's a great question to ask, particularly with ONC. I manage our Health IT Policy and Health IT Standards Committees. It's a challenge just to even coordinate between those two. We actually manage both of them. We have often had the question about how we can better work collaboratively with NCVHS. I would say, personally, because I have been sort of focusing on those two committees, I have not been focusing as much on NCVHS's work. But there's a lot to be done. As you can hear from all this, there's a lot going on. To the extent that there are things that are important, but that we're not taking up in our advisory committees that we still need input on, it would probably be useful to regularly -- quarterly or even every six months -- sit down and try to think through what your agenda for the year is, what our agenda for the year is, where there are overlaps and where there are opportunities.
Perhaps a take-home for me is that we should probably make sure that we do have somebody from our staff who is here for the full meeting, not just giving the updates, so that we can bring that back as well and think about how to align the work better and how to get the most out of what NCVHS does best versus what the Health IT Policy and Health IT Standards Committees can do best.
DR. CARR: Great idea. We welcome it.
MS. PRITTS: As you know, I think, we have populated the Privacy and Security Workgroup with some members from NCVHS to make sure that there is some coordination going on and to identify issues that they think might be better addressed over here than over at the policy committee level.
What I think in particular, going to a specific example right now -- somebody was mentioning some of these standards, electronic fund transfer, for example. The EFT and the ERA -- I have to tell you, having worked on this issue for a number of years, I'm scared about where that particular piece is going, or concerned about it, because it has been kicked around since 1996 pretty much, as to what the statute actually means on that one.
So there are specific things that are moving with standards that hardly even come up to our radar screen that we really need to know about and that really have, from my perspective, potentially serious privacy and security implications. That particular aspect is something that I think this group is really very well poised to help us with.
DR. CARR: I want to be respectful of our time. I'll declare the break now, but ask the speakers if you could stay around for a bit. I know there were a couple of questions that folks had.
We'll take a break now.
(Brief recess)
DR. CARR: A couple of housekeeping things.
(Administrative announcements)
DR. CARR: One very important thing. As you know, in our lifecycles here on the committee, we have graduating classes. Two of our current graduating class elected not to accept the option of being extended six months because of competing responsibilities. Mark Hornbrook and Blackford Middleton, you'll notice, are not here with us today. I just want to take a moment to acknowledge the tremendous contributions from both of them, both incredibly thoughtful, broad-thinking, both big-picture and practical, who really always brought one more idea to the discussion that made us think better and clearer and bigger.
Will we be bringing them back?
MS. GREENBERG: We certainly will be preparing the usual letter from the Secretary telling them that we'll be calling upon them in the future and thanking them, and the certificates. I think probably September will be our dinner for those members who are retiring in 2012. They will be welcome to come back. I don't know if they will be willing to. Otherwise, we'll mail them the necessary information.
DR. CARR: I just want to say that Harry Reynolds, had he continued his projected tenure, would have been part of that graduating class leaving in September. He has made a special request if he could be there, because apparently he has some things to say.
MS. GREENBERG: And, actually, Simon Cohn -- you never really go off this committee, so just accept it -- Simon Cohn was a presenter yesterday. He also said he would like to try to come to that dinner.
DR. CARR: Is that right? Oh, how fun.
MS. GREENBERG: So we'll have to look for a good place to have the September dinner.
DR. CARR: Great.
With that, we're now ready to hear from Populations on your hearing and your letter. We have the letter. You will give us an overview of the rationale behind this, what we learned, what we thought, and what the letter says.
Agenda Item: Population Health – SES Workshop Letter
MS. MILAM: We will. In fact, we have a PowerPoint to assist us with answering all of Justine's questions.
I want to draw everyone's attention -- you do have a hard copy of the letter in your material. It's behind tab 3.
What we will try to do with this PowerPoint is answer all of the questions about why we undertook this area, who it is for, and all of the relevant issues, so that you can better understand the scope of the project, as well as what we heard.
As Jim said this morning, the focus of the hearing was to better understand socioeconomic status and see how far we could get with development of recommendations. The hearing was held March 8-9. This came at the request of the HHS Data Council.
HHS has authority to issue standards regarding data collection, as Jim talked about this morning. It has been given a specific charge in the ACA, as well as a general charge. The general charge is the part of the statute that were keying off of. We identified from Jim the need to focus on recommendations around SES data collection. We found it fairly complicated. I'll say that. We're really excited to work in this area.
We had excellent testimony over two days. Unfortunately, I was not able to participate in the hearing. I got to listen over the phone, but did not get to be there in person. I found the slides really, really interesting. I enjoyed the testimony.
At this point I will turn it over to Larry to talk about more of the detail.
DR. GREEN: This is a masterful understatement on this slide. After wallowing in complexity, it comes down to the fact that the standardization effort should focus on education, income, occupation, and family size and relationships.
That little sentence right up there is pretty potent. We're pretty sure that there is no gold standard. We don't think there is, and we also think it's unlikely that there ever will be a one-size-fits-all reporting measurement for those variables. The reasons for that are:
Some of the findings and observations -- I want to ask you indulgence for personal privilege. Sitting through this, there was no greater learning on my part from this wonderful exercise than the development of great respect for the individuals who are members of the federal statistical community. There are some very talented people here. They are remarkable individuals. They do good work. They are classic examples of invisible leadership. One of the things I learned was some humility. It's very important to be careful with this, because this is complex, and interagency collaboration and listening to these experts is very important.
Also the role of the census surveys is very potent, very powerful. These SES dimensions -- we also learned that it's not just a person's or a community's socioeconomic status today, but these things fluctuate for individuals, families, and communities. It is those changes and their effects that are hugely important.
Then we learned about the key measures of SES.
To Justine Carr, what are we recommending and why? This is critical territory, but it's a very challenging area. From where we sit this morning, we're convinced that it's too early for us to be writing a letter at this point that makes very detailed recommendations about adopting specific standards. As Jim said a couple of times, a standard is a very high bar to meet. We're recommending that HHS undertake some additional efforts to explore the gaps in data collection and analysis for measuring SES on health surveys, particularly to improve our understanding of health disparities.
These are the major challenges that can be anticipated here. We'll just leave those up there for a minute. For the people on the phone:
This is our last slide. Vickie Mays served as the hearing chair. Bruce Cohen we also want to call out, and Jackie Lucas working with Susan Queen. These four individuals, particularly Vickie -- it would be hard to overstate their passion and their expertise in this area. Vickie provided fantastic leadership for this. Bruce has this way of sending you an email that sort of gives you whiplash, but makes you think. Again, Vickie and Bruce are examples of the talent and passion that really matter here. We thank them very, very much for getting us where we have gotten so far.
I would like to invite both of them to make additional comments before we open it up for your questions.
DR. MAYS: I think that the hearing was very insightful in terms of the task that Jim faces, and that is that, for SES, the problem is the differences that the various surveys need and trying to come up with a standard. I think one can do it for some of the surveys, but not all of the surveys. If I had my druthers, it would be even saying which surveys you could have standardization for. I just don't think we can do them for all of them.
But going forth in the future, I think this is probably one of the most critical issues for the survey, now that we have gotten the other things under way, because this is what the data keeps showing us is critical, especially for the variable of education. It's the wave of the future in terms of looking at these issues.
DR. COHEN: I don't have much to add. A couple themes. Unfortunately, I was unable to attend. Really, everyone has done phenomenal work in this area.
First of all, I had neglected historically focusing on occupation. That reemerged as something that we need to consider, for a variety of reasons, not only for environmental exposure kinds of issues, but as an important factor in looking at socioeconomic status. I think the dynamic nature of this variable is a key that Larry highlighted. With economic downturns and rapid changes and increasing disparities socioeconomically in our country, I think SES is going to play a greater role in looking at health in particular groups in our population. It becomes even more critical that we develop appropriate ways to quantify and measure this issue so that we can really target the populations most in need.
MS. GREENBERG: First, I want to thank everybody, Vickie, Larry, Sallie, Bruce, Susan Queen, Jackie Lucas, Debbie Jackson, who also helped pull this all together. It takes a family.
I unfortunately missed the first day, but I was there the second day and just found it very exciting. Specifically, I also was really glad to see occupation get the attention that, I agree, it needs.
I just want to say that I think -- and I don't want the subcommittee to sell itself short. I'm sorry I didn't have a chance to participate in the development of the slides, because I was in Spain. I think it's true. The subcommittee is calling attention to all of the additional work that needs to be done and the complexities. Jim and I definitely thank Larry for his support of the federal statistical community, who really came out in force. We held the meeting at NCHS. So that was all very nice.
But if you look at the letter -- and you will be doing that, obviously -- the subcommittee, on page 2, did provide some additional guidance on these four variables: education, income, occupation, and family size and relationships -- some minimal areas for standardization. Although the letter says that additional work is needed, I think the hearing and then the distillation of those results by the subcommittee and the staff did move us forward, with some additional recommendations.
It's my understanding that, hopefully, this will be very helpful to Jim and the Data Council and the Department as it explores trying to identify minimal standards that can be promulgated.
Do you want to say anything about that, Jim?
MR. SCANLON: Let me thank, first of all, the full committee and all of the members of the Population Subcommittee. I attended most of the hearing itself, too. You always learn a lot, even when you think you know a lot about this already. It just worked out perfectly.
What we really needed, most of all, was kind of a state-of-the-art review of where we are and where we are heading, where there is agreement and where there is not. We looked at, for example, how income data is already collected on HHS surveys. It's probably the one item that differs more among the surveys than anything. With other demographic items, we're fairly close, and we could probably collapse it in some way.
We knew there wasn't an obvious answer here. Sometimes, with the nice analysis that the committee is giving us, it gives us a way to proceed. Even if we're a little far away from a standard -- that's a tough level to meet -- we could think about a little bit experimentation. We could think of a little bit of best practice or preferred practice and gather a little more information and see where we get.
There are some items, I think -- education, for example -- that are always turning up as related to a lot of things. Whether it's causal or whether it's associated with something else, it seems to make a big difference.
These findings are very helpful to us. We'll take them to the Data Council's workgroup and have the agencies digest these and see where we could go next. That's exactly what we asked for.
DR. MAYS: I just want to make sure that we put it in the record to say thank you to the Census Bureau. They really did yeoman's work of turning out several -- I happened to see Bob Grove after that, so I thanked him personally. But I just want it in the record. Not only did we get several people from Census to come, but they did an excellent job. Thank you to the Census Bureau.
The other thing, Jim, is that you may want to keep an eye on Michael's Hout's work. He got an NSF grant to study the measurement of SES in GSS. He is looking at their measurements starting from the beginning all the way through. They are looking to reengineer the General Social Science Survey. I talked to him also a little bit later as well. I think over the span of the next couple of years, he will have some information. So you may want him to talk with you all.
DR. CARR: What we need to do is read the recommendations and then go to a vote.
DR. WARREN: Can I ask one question first? I was waiting for your committee. As you were looking at occupations, did the standard occupational code set come up at all?
MS. GREENBERG: Definitely.
DR. WARREN: I'm wondering about that because it takes quite a bit of effort to get a SOC code. As we really are trying to look at SES, and occupations are changing rapidly, especially in the whole IT world, how do we go about making sure that we have the right codes to measure what the occupations are?
MS. GREENBERG: We did hear from NIOSH, which is responsible for the occupation and industry coding. I had particularly wanted them there because they have made a lot of progress in automating the system, just taking the text both for occupation and industry and creating the codes. They have done a fair amount of validation on it as well.
I think that's something that is mentioned also in the letter. Maybe you want to expand on that.
DR. GREEN: On page two, under that bullet of occupation, it's remarkably brief. Bruce helped us get to the sentence, I think: Automated coding of occupation and industry survey responses should be further developed. There's some real progress there, to help get to the proper code.
DR. WARREN: The reason I ask for this is that the nursing community has been looking at the SOC codes. If you just go in and what you get is a nurse, there is a wide variety on the amount of money made, the job responsibilities, et cetera, within the nursing profession. Right now that's all lumped together pretty much under one code. I think there are probably lots of other codes that are the same way. Once upon a time they captured the intent, but they no longer do that.
DR. CARR: We have four recommendations. So we read the recommendations, and then a nice summary of what we heard, similar to what you gave us today. We can go through the recommendations, if there is any discussion, and then we'll entertain a motion for a vote.
Do we vote today?
MS. GREENBERG: You can.
MS. MILAM: We would like a vote, Justine, if it works out. Let's see how far we can get.
DR. CARR: All right. Take it away.
MS. MILAM: We are really starting on the second page of the letter. That's where you will find our recommendations, behind tab 3. I'll begin with the introductory sentence:
The committee has confirmed that the following areas are the key components that are necessary for the measurement of SES and on which standardization efforts should focus, and has the following initial recommendation:
Education. The relationship between education and health outcomes is well established. Education should be measured in single years completed up to five or more years of college and should also include collection of information on whether or not the individual obtained a high school diploma or equivalent. Surveys should also collect information on degree attainment.
The second recommendation there is around income. Income is critical for policy analysis and is necessary to describe the economic condition of the population nationwide and for geographic areas and subgroups. Income is particularly important for research on disparities in health care access and utilization. Income should be asked for the individual survey respondent, as well as for the respondent's family, as well as household income. The collection of income should include the measurement of total income, as well as income from specific sources. We have a parenthetical: e.g., wages and salaries, Social Security, disability income, et cetera.
The third recommendation is around occupation. Occupation and industry are core socioeconomic variables collected in all federal health surveys. Relevant distinctions in occupation are not detected by other indicators of SES. At a minimum, a set of two standardized questions to collect occupation and industry should be implemented. The set of four standardized questions used in the American Community Survey that collect additional about work tasks and employer should also be considered. Automated coding of occupation and industry of survey responses should be further developed.
Family size and relationships: Family size and composition are required to calculate poverty, and survey measures should collect information on family size and composition, in compliance with official federal poverty guidelines as issued and published each year.
Those are the four recommendations we distilled from the two days of hearings. Is there discussion on the recommendations themselves? Ob.
MR. SOONTHORNSIMA: I just have a very quick question about family size and relationships. Do you imply also where you have households with a multi-generation dimension? How does that fit in that context, in this particular recommendation?
MR. SCANLON: It's in there.
MR. SOONTHORNSIMA: Is that implied?
MS. MILAM: "Composition" is a broad term. I think it could include anything we need it to include. But you're right, it is very broad.
MR. SCANLON: Typically, you list everybody in the household and you ask about relationships. There is often more than one family or extended family in a household. If you get the list to begin with and the relationship, that gives us some flexibility.
MR. SOONTHORNSIMA: The only reason I'm bringing it up is because you hear about hardships placed on the family head of household, whoever that is, taking care of elderly parents or disabled family members and so forth.
DR CARR: I have Walter, Judy, Linda, everybody down to Bill. Walter?
DR. SUAREZ: This side of the table is the standards section. The comments that I have are in line with what Ob was pointing out. I'm fully supportive of all this, but I was trying to figure out -- when you are recommending standards, either you are very specific about age should be collected in the following ranges, or something like that. It seems to me that the recommendations are broad, so that someone can then define the standard. I guess that's the intent, right? For example, it says education measured in single years up to five. We give them some parameters for them to actually define the standard by which the data will be collected.
There's only one element that I have some question about, and that is occupation. The recommendation says, at a minimum, a set of two standardized questions to collect occupation and industry should be implemented. I'm not sure which are those two questions, whether it's one question about occupation, one question about industry or it might be helpful to clarify this.
DR. CARR: Maybe a little wordsmithing there to clarify.
MS. MILAM: We can fix that.
DR. SUAREZ: In that same one, a set of four standardized questions using the American Communities Survey -- is that referenced in the document or do we have a footnote in the letter that explains or clarifies what the American Communities Survey is?
DR. CARR: We will do that.
MS. GREENBERG: Also I think there are minutes from the meeting, a summary of the meeting. I don't know if those have been made available yet
DR. MAYS: They are in the book.
MS. GREENBERG: That will give us more detail about what the committee actually heard.
DR. CARR: But we want to make sure the letter reflects --
DR. WARREN: I think the reference needs to be in the letter, because that's what people see.
The other thing is, quite honestly, I did not know there were recommendations in this letter when I went through. I got to a conclusion -- because the recommendations were so global that I didn't see them. And I missed the one term that says "initial recommendations." If there could be a bold header for that, because if I missed them, whoever this goes to would probably miss them as well.
MS. MILAM: Thank you, Judy.
DR. CARR: Linda.
MS. KLOSS: My question was the same as Walter's, clarifying the two criteria.
DR. CARR: Vickie.
DR. MAYS: I want to go back to family size and relationships. A couple of things came up, and I'm not quite sure how to change it, if possible, but how to consider it may be something to put on the table. When we were talking about immigrants, for example, one of the things we were aware of is the extent to which they support family and family is not a part of the household. There are some different things that we potentially could talk about. I'm not sure how to do it. I was trying to decide whether to modify composition with family and household composition, whether that helps to push it a little bit.
DR. WARREN: That would help me a lot.
DR. MAYS: It is just to modify where it says family size and composition, which means, then, that you are asking about the family, and it's the total family, regardless of where they are. Then, to get to what Ob is saying, you ask about the household, so that you get everyone, regardless of whether they are biologically related to the person or not. That might help if we have that modifier there.
MS. MILAM: Vickie, are you saying to add "household" right before "composition"? Is that the amendment?
DR. MAYS: Where it says family size, "and household composition," so that it's understood that you want to have the information about the family, as well as the household.
DR. CARR: What was the clarification?
DR. MAYS: It should be family and household before the word "composition." And it should be "and," not a slash. I think the survey people are really going to talk about it, because to sometimes do a whole household may be a lot. But I think that's how you get to what Ob is saying and then how you get to non-biological, as well as non-residents.
DR. CARR: Bill.
DR. SCANLON: It is about income. I guess I'm reading into your intent in terms of being more comprehensive about sources. A suggested word change would be to put in front of "income" "earned and unearned income," from specific sources. You might want to think about the list, to get an example of unearned in there, as well as think about the issue of the prevalence of different sources of income. Census talks about retirement and disability benefits. Then there are also income maintenance benefits and unemployment compensation. Getting at some of the bigger categories may be helpful in that list. I would probably put retirement and disability benefits and income maintenance and unemployment compensation and then say dividends and interest, or something like that.
PARTICIPANT: We weren't trying to be all-inclusive.
DR. SCANLON: The issue was that the list at this point doesn't include anything unearned. The disability is one of the narrower categories.
DR. GREEN: I would like to say this back to you. We need to get the words "earned" and "unearned" in front of "income." Then in the parenthetical list, we need to get two or three examples of these other broader categories. Correct?
DR. SCANLON: Right. That's it.
DR. WARREN: That brings up another question. Just bear with me, because my standards mind is working. I don't know what these surveys look like. Are these open-ended questions that the surveyors ask? Sometimes. To me, especially in occupation and maybe even in income source, there should be a code set that's developed for the answers and then leave -- as much as I hate the word "other" --
MR. SCANLON: There are. It's well developed.
DR. WARREN: IS there a way to say that in this letter, to use those accepted code sets for these responses or to work on developing them or evolving them?
DR. GREEN: I think the reason it doesn't say that is that we did not review them all. To say you should use these code sets would be a fairly bold statement.
DR. COHEN: The use of standard codes is critical to understanding -- we kind of address it, but not specifically, in the recommendations.
DR. WARREN: Maybe one recommendation would be to explore all these code sets to see if they are relevant.
MR. SCANLON: That's the issue itself, Judy. There are some differences in terms of the categories.
MS. MILAM: Judy, are you suggesting a fifth recommendation around the --
DR. WARREN: I am willing to defer to what the committee thinks the purpose of the letter is. That's why I said, when I read it, I start thinking what the answers are, how I will deal with the data, and things like that. And can I collapse and aggregate? I don't see any ability to do that. If that's something that is next work, then maybe that goes in a conclusion or in your findings or something. But I do think at some point it would really strengthen the letter if the whole issue of code sets is looked at to do a comparison and a harmonization. I think that's one of the biggest problems of some of the federal surveys. We use different words for the same thing, and, unfortunately, computers can't intuit the intent.
DR. CARR: The second paragraph maybe bears reading. The first one is about NCVHS. The second one says, NCVHS was asked by HHS Data Council to consider the development of standards for the collection of information on socioeconomic status in health surveys conducted by HHS, in accordance with ACA Section 4302.
DR. WARREN: There are standards for collecting these surveys. There are also code sets that are the acceptable values of questions in those surveys. To me, the standards for the surveys and the code sets are two very different things.
DR. CARR: I think using the term "code sets" makes it clearer.
DR. GREEN: Let's see if we can do it this way. In that third paragraph on the first page, the paragraph that starts, "Policymakers, researchers, and other data users are better served," can we just -- Susan, help me here -- in that sentence, the one that starts with, "Standardization allows more uniform data collection and comparison across surveys," can we insert into that something about the harmonization as code sets, as possible, or something like that?
DR. CARR: I have a clarifying question. We are finding it buried in there. Actually, you have been exceedingly concise in your language, which is great. But we want to make sure that we don't miss an opportunity. Is there a risk that we would to use the code sets in this or is it implicit that that would be the only way we would do this?
DR. GREEN: Bruce and Vickie and Sallie may have a differing viewpoint. My own viewpoint is that the reason we're not making strong statements about code sets is that it's a mess. I think we need to be very careful to not overstate -- remember a while ago I was saying that I have gotten a very strong dose of humility out of this exercise? I went into this exercise thinking, oh, yes, we're going to be able to make sentences like this that use this code set or these two code sets. All we have to do is just fix these two lines and then they will be standardized. No. And sometimes it's because the law says, you will do the following.
DR. CARR: Could I ask another clarifying question? Would we find a middle ground by saying "leveraging available code sets where appropriate"?
DR. GREEN: That is the kind of language I'm looking for.
DR. WARREN: What I was thinking of -- in the concluding comments --
DR. COHEN: Yes, that's the place to put it.
DR. WARREN: -- it says, we recommend that HHS undertake additional efforts exploring gaps in data collection. Then I would say, code set composition and analysis for the measurement of SES. Just leave it there, and that's a future thing.
DR. COHEN: Actually, that is one thing I wanted to discuss, whether we should strengthen and be more explicit and specific in our concluding comments when we recommend that HHS undertake these analyses, whether they report back to us at some point in time about findings with respect to harmonizing and deciding which code sets to use and how to measure some of these variables that we are uncomfortable making recommendations on.
DR. WARREN: I would bring up again that you have a recommendation buried in the concluding comments. Is that really a recommendation or is that a plea for future work? It says "we recommend," at the very bottom of whatever the last page is, in the concluding comments.
DR. CARR: The concluding sentence: "We recommend that HHS undertake additional efforts in exploring the gaps in data collection and analysis for the measurement of SES on health surveys to improve the understand of health disparities." Then, "The committee will continue to support your efforts to identify standards in this important area."
Let's just take the question that Judy raised. Should this second-to-last sentence actually be a recommendation?
("Yeses")
DR. COHEN: My answer is that it should be and it should be expanded and be more explicit in terms of what it is that we're requesting. I don't know whether -- we sometimes put in language about reporting back to us on progress related to the specific tasks that we request be done.
DR. CARR: There are two questions. One is, yes, it should be a recommendation. It looks like we have two kinds of recommendations, then. What are the components that are necessary? I think that's what the four address. This is a second, sort of overarching -- that we undertake efforts to explore the gaps. Is that right? You could take that back to the committee.
Marjorie.
MS. GREENBERG: It has already been recommended, here on the second page -- this is, by the way, something that has come up in both of the letters you are talking about today. A typical pattern of NCVHS letters in the past number of years has been observations and findings, then recommendations. But there seems to be a compelling need identified in both of these letters to actually start with recommendations, at least some recommendations. I think that's part of the confusion.
I think it was suggested that there be a subtitle saying "Recommendations." Then I think this recommendation in this last concluding comment could come right after these four things. The subcommittee can meet this afternoon and talk about how to make it more specific, the way Bruce is suggesting.
I was just going to suggest, because often people don't really know what you mean by standardization -- I think this discussion has helped tease that out, to some degree -- that in the third paragraph, to say, "Standardization of questions, code sets, and mode of collection allows more uniform." Many times I have had people say, oh, yes, we adopted the standard, and they use different questions and they use different categories. It's just that they use the same data element, and you can't compare it. There are other ways to standardize, too, but I think, if you at least put, since we're talking about surveys here, questions, code sets, and mode of collection, that would help.
DR. CARR: Thank you, Marjorie.
Judy.
DR. WARREN: I was just going to address that last recommendation. I think it would work the way that Marjorie said or keep it at the end and change the title to "Concluding Comments and Recommendations."
DR. CARR: But I think Marjorie raises a good point. The look and feel of our letters, I think, makes it easy for folks to know where it look. I get it that this one was, there isn't enough data to make recommendations, here's where we have to study, and, by the way, this is what we heard. I think that's okay. But you brought up the fact that we ought to be able to find the recommendations in one place. But let's leave that to the committee.
Vickie?
DR. MAYS: I think now, if we are going to discuss the specifics at the Population meeting rather than now, I'll just hold.
Len. Could you introduce yourself?
DR. NICHOLS: Yes. I am Len Nichols. I'm a frequently tardy member of this committee and recently absent member of the Population Subcommittee. I have no conflicts. I'm from George Mason University.
I would preface with an apology to those of you for whom I dropped off the planet in the last couple of months. Duty calls -- day job and all that.
Therefore, I'm even more cautioned by Larry's statement of how much humility he has acquired in this process. I hesitate to open my mouth since I missed the hearing. But I do have a couple of what I would consider to be kind of big questions.
They relate to, very simply and crudely, why are we doing this? It seems like it's a request from the Data Council pursuant to the ACA. I'm perhaps not the only one in the room hyper-focused on what's going to happen roughly a week from now. Is there a way for this not to be tied to the ACA, so that, in fact, this is something we would recommend to HHS independent of the ACA status? Maybe even the Data Council's request could be couched in a less contingent form.
That speaks to what I take to be this concern about the whole letter. It is kind of a bubble. It is a reaction to that question. But one who didn't know anything might think we were, therefore, saying we don't know much about SES impact on health today. I think, in fact, we do. When you look at the way it's framed in education, income, occupation, family size, we say the relationship between education and health outcomes is well established. We don't say that for the others. It seems to me that's an important piece of the context here. I don't think anybody in the country doubts that income is related. I don't think anybody who has read the Whitehall study thinks occupation isn't related.
It's not that we know nothing. I say that only because I'm worried about the context in which this thing could be interpreted if the Court rules in a certain way, but also in the larger policy discussion. I just think we should be symmetric about what we think we know now.
Then we could certainly acknowledge everything we just agreed to and what, I guess, is the real source of Larry's acquired humility: These code sets are way more complicated across surveys than a civilian might think. You can't just blatantly recommend standardization across the board.
But it's not that we don't know that income affects outcomes. It is that it's hard to be precise about precisely which subgroups, because different types of subgroups appear based upon the surveys. Is that the fundamental question? I would feel better if we would say that is the problem we're trying to solve.
DR. MAYS: I just want to respond. One of the differences is that there's a difference between the variable of education, income, and occupation, and a difference between when it is a socioeconomic status variable. What we have lost that we didn't have as much comment on is about the prestige factor. There has been a change over time, for example, in occupations. What used to be prestigious isn't anymore. The issue that we struggle with in terms of saying we know about the relationship in terms of SES is that we don't necessarily know it as a social status standing variable. There is a relationship, for example, between income and health, but we are not necessarily measuring income well enough to say where it stands relative to the concept of SES. The concept of health, yes. But the concept of SES is some of the difficulty that we have in making such strong statements, I think.
DR. CARR: Comments on this?
DR. COHEN: I would like to respond to Len. Thanks for raising those questions and those issues. I don't see that this necessarily needs to be linked to ACA, which I think would be great. I don't know that I totally agree with you that we know a lot. I think our country is becoming a lot more diverse, and as inequities increase -- certainly the income inequities have increased dramatically, and that has been clearly documented -- the relationship between SES and health -- although fundamentally we know that low SES leads to poor health the specifics about that relationship are becoming more cloudy, in my mind, and less explicit.
My goal and interest in this is figuring out a way, given the rapid changes in dynamics in our society, that we can standardize an approach to collecting information so that we can confirm, reconfirm, and identify new target populations with respect to population health related to these measures.
Historically, we think we know a lot, but I don't know whether that knowledge base is consistent with our current reality.
DR. CARR: Jim.
MR. SCANLON: It is a good discussion. It is actually about the meaning of the variables themselves and the analyses and the causality. A couple of things.
We don't need to do a literature review on every one of these variables and its relationship to health. That's not what the committee was asked to do. It arises out of ACA, but the Secretary has the authority to issue standards for her own surveys anytime we want. We have done it before. You can finesse that if that's an issue.
But I don't think it would be helpful to go back and try to compile a -- we don't need a systematic review of the literature on the relationship of these variables to health. We're assuming that we can see that. What we need now -- and this is the context in which we were asked -- when we asked for public comment on the data standards we were proposing in terms of the next step, the next area most people thought was an area that would benefit from and was more or less amenable to standardization, the whole SES set of variables came up. I don't think many of the commenters knew what exactly they meant. They knew that they needed more than race/ethnicity in those others.
What we needed from the committee -- and I think the committee has done this -- was a state-of-the-art review on how federal surveys are now collecting these data. If there are indices that are preferable to use -- it sounded like there weren't, really -- that would be useful to know as well.
But what are the components of SES, in current thinking, in survey research now? How is it being measured now? What's the potential for standardization?
The reason it's not so easy to say, let's pick a way, is because there are surveys that actually have legal responsibilities for income and employment. You can't just say we don't like the way CPS does it. You can't just do that in standards, as all of you know. There are ways to look at standards and conventions, categories, ways of asking questions that are appropriate to the nature -- who exactly you are asking it of, and in what manner you are asking it. I think that's really what we're looking at.
In terms of income, for example, there are starts. We can't just throw away the SOC or the standard industrial classification as a federal agency. We have to look there first. With race/ethnicity, as you know, we had to look there first. With income, there is no overall standard. There are clearly ways that surveys ask these questions.
So I honestly wouldn't spend a lot of time trying to establish the need to do this and the research on these variables relating to health. You told us what you found in the hearings. I don't think you need to describe them. Certainly we know -- maybe I'm assuming that everyone will know as much as we do. We know how the data is being collected in those surveys. We know what the potential for standardization is. You have looked at it and you said there is no obvious standard, and it would be quite a bit of work to standardize. Maybe standardization is not even the issue. Maybe agreeing on certain conventions would do more to help, which is a sophisticated way of dealing with this.
I don't know that you need a lot more. Certainly any more specific information you could give us in terms of parameters would be helpful. But I think we certainly know the way we would go.
DR. CARR: Go ahead, Larry, and then Len.
DR. GREEN: Len, I have a suggestion for how we can potentially be responsive here. You had two points. One was, don't blame it on the ACA, and don't make it look like we really don't know that SES is really important and that we don't know a lot about it. In the second paragraph, before that "in accordance with the ACA," we could just say we heard no dissent to the great importance of measuring socioeconomic status, and the Secretary and HHS has authority to determine how this is measured. Then we can say, additionally, we're required to do this now by these things.
Would that be all right, Len?
DR. NICHOLS: That would be wonderful. The only thing would ask, then -- let's go back and look at the first sentence of education on page 2. I love that, Larry, and I'm glad Justine was wise enough to have you talk before me. That solves my problem. But I look at education and it says, "The relationship of education to health outcomes is well established." We don't say that for the others. That's what worries me.
DR. CARR: Let's have the subcommittee go back and discuss that -- a parallelism. If we're going to say it for one and not the others, there has to be a reason.
Walter?
DR. SUAREZ: I just want to go back to the occupation one and the code sets. I actually participated in the IOM study on incorporating occupational information in the EHR. Actually, I mentioned this during the hearing. We had NIOSH representatives here presenting. The formal, official recommendation from the IOM in that study was the following: Adopt the standard occupational classification, SOC, and the North American Industry Classification System, the NAIC, coding standards. This is for use in the EHR. It's sort of the standard coding for occupation and industry.
Now, I'm not suggesting that we say that in the letter, because we couldn't get down to that level. I don't think the hearing would allow us to do that. But I think what we can do is incorporate a statement on page 2, in the occupation section, after, "At a minimum, a set of two standard questions," say something about "and use national classification and coding standards for occupation and industry."
DR. CARR: Bring that to the committee. Again, there's a parallelism. If we're going to go granular for one, we should be going granular for the other.
Susan?
MS. QUEEN(?): I just want to mention that most of the surveys, when they do code it, are using those standards, like the census. When they bother to use the variables for that purpose, where they are actually specifically coding, they usually use those standards.
DR. CARR: Okay. I take it we are not ready for a vote. But this was great discussion. It just demonstrates the richness of the different perspectives in the committee. It always brings one more thing of importance.
With that, I think we will adjourn for lunch.
(Recess for lunch)
DR. CARR: Welcome back to the afternoon session of day one of NCVHS. We want to get started right on time.
We have a little bit of rearranging of the schedule. We're going to begin with the quality letter. Following that will be the Privacy Subcommittee briefing from the April 17-18 hearing. From there, we will go into the data access and use, followed by a discussion that really came out of the Standards Subcommittee of what all the things in front of us are, how we prioritize and how we also recognize some of the things, like claims attachments, that have implications for privacy, for quality, for population health as well, and get those issues addressed.
Let's turn it over to Paul.
Agenda Item: Quality Letter -- Steps to Improve Support for Consumers' Decision Making
DR. TANG: You have a draft in front of you. Let me give a little bit of a background. The start of it was a hearing that we entitled "Measures that Matter to Consumers." You'll see that the subject doesn't exactly say that. It says "Steps to Improve Support for Consumers' Health Decision Making." We set out to work on quality measures.
The reason we ended up with a bit of a detour -- but I think it's actually fortuitous and it's a lemonade play -- is because one of the first things we had was a consumer panel where it said, I can't even think about quality because I can't figure out what plan to get. So in a sense, they had on bandwidth to even consider who to pick as a provider and what to do with every health-care decision, because they got so wrapped up in not being able to be well informed to make a plan choice.
So we figured we didn't want to waste our time, and we had to fix the problem that's in the way of their even considering measures that matter to their care. That's how we got into that.
Somewhere along the line -- and I think Justine may have been part of it -- we said, why don't we take advantage of things that are already going on instead of just saying they ought to do such-and-such? A thing that's going on that the federal government has control over is health exchange. Can we cause the timing of the health exchange and -- that's one of the few times when a consumer has choice, in this health exchange. Most employed consumers have almost no choice. Even when they have a choice, there's such a big financial difference that there's no choice. In a sense, the insurance exchange has become a real opportunity to test the notion of whether the consume can make an informed choice about health care.
So that's sort of the setting for this letter. I'm just going to paraphrase first.
Do we need to read the actual recommendations?
DR. CARR: Yes, for the recommendations, but the background --
DR. TANG: First of all, we already live in a world where there's much more emphasis and there are more initiatives going on in quality-related matters. It's the National Quality Strategy. It's the Million Hearts campaign. There are a lot of things going on. It's the ACA, a lot of things coming out of the ACA.
We are using the first page to say that's the context. What's not going on is, we think, giving enough good information, consumable information, understandable information to consumers making choices about things related to care -- plan, provider, and treatment decisions.
The hearing, which was very good, had a number of findings, which are on the second page. One that I already pointed out is that their first decision at open enrollment is, what plan do I choose? You try to make two decisions: What's a better plan? How much will it cost me? Probably the way they look at it is, how much will it cost me, and then try to figure out what the better plan is.
That became the brick wall that we had to get across before we go anywhere. That's why we started there.
DR. SUAREZ: Could I interrupt and ask a quick question on that level? The experience that a lot of people have -- and I don't know if the landscape has changed -- the experience that most people that are employed have is that employer selects one health plan and then the individual cannot choose a health plan anymore. They choose providers within that network. It's more of a rare, or not that frequent, situation where an employer offers three or four different health plans.
DR. TANG: That's correct, which is part of the problem. The way we looked at it was that the exchange was the first time people had a chance at making a choice. We're trying to take advantage of that opportunity to fix what measures and how they are presented.
DR. WARREN: At the hearing, though, there were some people who said that they did have to make a choice. They were given a choice between two or three plans, for different costs, different deductibles, and things like that. It was exactly that -- how do I even know how to choose off of this list that I have been given? Or I have been given one plan, but different tiers of the plan that I can subscribe to. How do I know what that will do for me and my family?
It was incredible.
DR. TANG: Most people are given almost no choice. There's a high-cost plan and there's a much lower-cost plan, and that's sort of the, quote, choice.
DR. CARR: Matt, did you want to say something?
MR. QUINN: I was just going to say, the other dimension on this, too, is that a plan that's good for one person might not be good for another. A plan that is good, financially and quality-wise, for a woman of childbearing age might not be good for someone who is not. Being able to provide that sort of information is just not happening today.
DR. TANG: Continuing on, it wasn't just cost. What's the total coverage, in a sense, for me? It really is, what's my out-of-pocket cost? What people really wanted to know is, for me in my stage of life, what's the predicted cost for over this next year? If next year you are planning to get pregnant, there may be a different plan that's better for you. What is the cost to me for this year of my life? That's what they would like to have, and that's clearly not what they get.
Another thing is quality information, the so-called quality measures. How can I actually understand I would like to know, with my conditions, what measures I should even be looking at. The problem is, even if you know that -- let's say you are a diabetic -- you don't really know how to interpret the measures that are being given to you. They are not measures that matter to the consumer. Do I really want to know what my A1C or glucose is going to be or do I want to know my chances of going on dialysis, when I choose this plan or this provider?
It's clearly the latter. When I'm going to make a decision about joint replacement -- well, you virtually get no information -- what I would like to know is, can I walk again? Will I be in pain? How do the other people from that surgeon fare? These aren't available.
If there is some information available from some survey, it's usually not in a standard way so that you can combine it with other information, so you can compare the two surgeons, for example.
Finally, we heard from physical therapy. Most available ones are proprietary. Although they can do a research project, they can't actually afford to do it in operations.
You can hear that they -- "they," consumers and purchasers -- really want better information that matters to them and that ideally would matter to them on a personal level and that wouldn't cost a fortune in license fees. That's sort of the finding, if I were to try to distill it.
Along with that, how would you go out and design a measure or certainly design the presentation of this information in ways that would be useful to consumers? Asking consumers is a good place to start. You could use user-centered design principles so that you not only ask them in the design phase, you test it with them.
There are thoughts that -- they are straightforward and done in other domains, but they certainly are not applied in this domain. We're not getting the outcome that we want.
Taking it further, moving towards an ACO, then you would like to know more about the community so you can incorporate that kind of information, whether you're an employer looking for, what plan should I get -- wouldn't it matter what communities your employees come from? You can see how this actually pulls in a lot of our past work as well in terms of community health data. It just becomes a very rich area to produce understandable, pertinent information that doesn't cost a lot of money and can be standardized and aggregated. That's the goal.
Our recommendations start on page 3. It says there are a lot of people who might even be motivated and intend to either develop or use some of these measures, but because it's really not well done at this point, we're suggesting that HHS actually create or provide technical guidance to support developing measures with these kinds of attributes, to support development and implementation and presentation of the information that comes across. That guidance should ensure that the measures and tools used -- and here's where we use the federal lever -- most of the insurance exchanges will be either run by or contributed to by the federal government -- partially sponsored, I'm sorry, by the federal government -- then the federal government has a say.
Could the federal government, as part of the health insurance exchanges, ensure that the measures that are used to communicate to consumers comply with some of these attributes: That they be usable to consumers, that the presentation include formal usability and validation testing prior to release and ongoing feedback. That's one recommendation.
Another thing HHS could provide is to fund additional research on how to either help understand what consumers need or help consumers use what they have.
The third piece is research on measures of patient-centered care. How do you develop measures that pertain to individuals?
The fourth one is training materials and potentially software that help consumers assess the information that's coming at them to make more informed choices.
Those are four recommendations for HHS to help the industry get towards better measures.
The second set of recommendation is to essentially start creating model ways to communicate with consumers using its federally sponsored health insurance exchanges as a place to have some of these model reports. The first part of that recommendation is that the exchanges have standardized information and tools that help patients make these choices. An example is nutrition labels, where every food product has to have this kind of disclosure. Could every plan have to fill out these kinds of information and it be available either in presentation format or on a tool that says you enter in your problems and your age and so forth, and then you get back standardized kind of information, which could include out-of-pocket costs.
The second part is, once a consumer does get beyond the plan -- as they are assessing which plan to choose, they are obviously interested in what providers are associated with the plan. Those things should be linked. Then we prescribe a minimum amount of information about each provider, like where they practice, what their office hours are, what the language is, what the quality measures are that pertain to them, what the patient experience of care is, and other characteristics, such as out-of-pocket costs, things that pertain to the patient at the provider level.
The third recommendation in this set is to essentially take advantage of all the information that the federal government already has, whether it's PQRS, whether it's HCAHPS or GCCAPS(?) -- take that and create model reports that display that to consumers so that they can have that when they are looking at any plan or any provider. Again, what we're leveraging here is the fact that the federal government is going to sponsor these exchanges, so the federal government has a role in dictating what is made available through those exchanges. The principle of the exchange is to give consumers choice, in addition to having a set of plans to choose from with a different cost.
The third set of recommendations has to do with encouraging collaborations among entities that both develop and endorse consumer-oriented measures of health and health care, so that they do meet these attributes of being relevant, well specified, publicly available, meaning nonproprietary, and leverage consistent value sets.
Let me just read the recommendations.
Specifications for consumer-helpful, patient-centered measures should have clear details regarding terminology, numerator and denominator construction, value sets, metadata so that measures can be understood and implemented consistently -- well-specified measures, that is.
Secondly, the measures should be transparent. In other words, promote the public availability and use of consumer-helpful and patient-centered measures to the instruments.
Third, the endorsement body should incorporate these kinds of specifications or criteria in their endorsement criteria for measures particularly that pertain to consumers.
Fourth, additional standards development is needed to represent the consumer-oriented quality measures.
I think some of these things probably can be collapsed.
Fifth, consumer-oriented measures should be developed and tested according to these principles of user-centered design.
So it's basically saying, for the people who develop the measures, for the people who endorse them, for the people who test them, give a set of principles that make sure that consumers' interests are aligned all along the way.
We started out looking for quality measures for consumers to choose providers and found out that there other things that would have to be knocked down if you're going to get there and also uncovered the fortuitous opportunity we have at this moment in time when we're going to stand up these health insurance exchanges throughout the country that the federal government has a big role and a say in. Could we move towards model ways of communicating to consumers?
DR. CARR: I just want to comment. I think the way the hearing was held and then the opportunity to synthesize what was heard immediately afterward -- this is an example of how helpful it was. We came away with something actionable that wasn't exactly the question we asked, but informed the collective deliberation. I thought that was really excellent.
Bill?
DR. SCANLON: I think this is an incredibly laudable goal. The question is, how are we going to get there? I don't know how much you discussed at the hearing the federal employees' program. I think, in some ways, it may be at this point the state of the art in terms of doing this. At the same time, given what you said are the objectives, you can talk about the limitations and where they are in terms of this undertaking.
The reason I bring it up, in part, is that I happen to be in it and I happen to be in Blue Cross. But when you go to the information they give you in the standardized form, this is the Blue Cross option for the country. Like politics, health care is local. So there is the issue of what your experience is going to be. That goes back to what you talk about in terms of providers that you are going to be able to access.
The exchanges -- we don't know how they are going to operate. We could have statewide plans in a lot of places or curious configurations of geographic areas in a lot of places. I think it would be useful to emphasize in the letter this whole issue that we have to get particularly the provider information down to some kind of community level that is relevant to people. When you go in there, you put in your zip code and they tell you who is within 25 miles of you. Even putting in your city, your metropolitan area, doesn't really help in terms of true access to provider types.
This is incredibly laudable, and you can talk about the federal role, but I can also tell you that there is a lot of information that currently isn't flowing that is going to have to be assembled to make this happen. I think we have to underscore that this is important, but also recognize that there's going to have to be a lot of attention to making it happen.
DR. TANG: I think you are right. First of all, I think your idea of working with the FEHB is a good idea. It's the same principle, but, as you say, it has a longer track record and applies to all the federal employees.
The second is the plug-in. We do talk about the tools, and we even describe software tools for literally doing exactly what you said: Here's everything about me, here's my zip code, what can I --
DR. SCANLON: I guess where I was going, in part, was to emphasize -- I don't want to know what a plan's network is, because the network could cover the state. I need to know, where I live, who the people are in the network that I'm going to be able to access.
MR. QUINN: The other is that often people want to choose a plan based on whether their doctor is in it. Just like I want to choose a drug coverage option based on the drugs that I'm on, I want to choose coverage based on whether my doctors are in it.
DR. TANG: That's what we intended, Bill. I see what you're saying about networks.
DR. CARR: And it's about keeping care local, too.
Walter?
DR. SUAREZ: I was thinking of a number of regulations and activities that happen on insurance reform and insurance exchanges. The Office of Consumer Information has put out a lot of directions and guidance and new ways to direct and explain to entities that are going to be setting up these information exchanges how to provide information to consumers and what kind of information. There's already a lot of that. I wasn't in attendance at the hearing. Was that all taken into account? There's already a summary of benefits that are defined now and have to be provided. There are a number of regulations that already push in the direction of standards.
What I was trying to look at was how this can advance that level of effort that has already been under way. Or is this sort of one step behind?
DR. TANG: I think it's at the NPRM level now for the insurance exchange. Those were obviously not done when we -- and I don't know whether it's ahead or behind. It's a little too bad that we might be missing the window, unless we can get this letter out tomorrow and it can affect the actual final rule.
DR. CARR: We will get this letter out tomorrow.
DR. TANG: Thank you, Madam Chair. But our intent was to influence exactly the kinds of regs that you are talking about. If there is any kind of opening, they could consider this and maybe create an opening that they rule on later when they issue more regs on the exchanges.
It was just trying to capture an opportunity, if it's still possible. And I like what Bill said about the FEHB.
MR. SOONTHORNSIMA: I think we might be a little ahead. To his point, it's true, as we see the standard benefit description that you have to do, that tries to spell out the benefits, what you are getting for the plan. But this is different. The second recommendation, which is a really good one, is to describe also the doctors -- let's be very specific, and to Bill's point, this is very local the doctors that you are either using today or thinking about using. So this is even beyond what is being prescribed today through ACA.
With that said, I think it's a good idea and it's a good goal, but I wonder if we might be too prescriptive. When I read this -- for example, when you say HHS should develop model report formats for use by federally supported is that at the state exchange? Some states are falling back to the federal exchange. Or do you mean both?
DR. TANG: We thought wherever the federal government had a role. When the states do relinquish and the feds come in, they can dictate.
MR. SOONTHORNSIMA: You might spell it out. "Support" means different things to different people. To me, "support" means I get a subsidy. That is a way of support, financially.
But maybe even more prescriptive here is point B, where you are really saying that, even before you select a plan, regardless of what metal you are using, you will be able to look at the provider directory. It sounds good on the roadmap. My concern is that these health insurance exchanges are not trivial. These are really difficult to stand up, to begin with. There's a lot of navigation to go through, coordination with the Social Security Administration, so on and so forth. Then the enrollment process -- new process, period.
So I wonder -- instead of being very specific, very prescriptive, leave the notion out there saying that if you are going to participate on the exchange, this type of information should be provided down the line, beyond what has already been asked for in the law.
DR. SUAREZ: And part of the reason for the point I made is that I don't want people who will receive this letter to say, check, this is done. A number of these things are already done. The reason I'm saying that is that a lot of health plans have already the information about their network. The question is -- if they are going to participate in insurance exchange, they should provide that information.
MR. SOONTHORNSIMA: But don't be too prescriptive about how they provide it, because it's hard enough. For example, in order for you to see the doctor in your local community, a lot of these plans already provide the information where it's available. That's why this is a good one, because not all plans do this today. So this could be that glide path that we're trying to help direct.
DR. TANG: But we are also saying that what consumers told us is that the quality information that they do see doesn't always pertain to them, and it's also not necessarily that useful. A diabetic, as I said, doesn't necessarily want to know what your glucoses are so much as they want to know, how many people go on dialysis -- something that's more meaningful in their lives.
MR. SOONTHORNSIMA: Wouldn't it make more sense for us to focus on what the types of measures are that should be -- I think that's in here.
DR. TANG: That was the original intent of the hearing, actually. Then we uncovered a lot of --
MR. SOONTHORNSIMA: But if we haven't resolved that, why would we want to prescribe it in the HIX? Maybe that's not the intent. It says that health insurance exchanges should provide information on the health-care provider networks available. When you say health insurance exchanges, that's very specific, when, in fact, the health insurance exchanges, for the most part, are your portals, the brokers. That's very prescriptive. Now you are getting into another HHS role, where they have to design how these HIXs are supposed to operate.
DR. TANG: I guess, to that word, we could have said "contain." Right, the exchanges don't have the -- they are just the broker. But they can require, in order to participate, to be listed on the exchange --
MR. SOONTHORNSIMA: That's exactly right. Keep the spirit of what you're trying to say here, but don't prescribe.
DR. SCANLON: We have a history here where we have gone from -- when Medicare Advantage began or Medicare Plus Choice began, you did go to the plan individually to get the information. It was unbelievably difficult to get information to compare plans. Eventually, CMS took that function on and they started to mimic what FEHBP does in terms of standardizing information, and we now have Plan Compare. These exchanges are not fully defined yet, and they can have the capacity to say, here's the kind of information, here's the format we want it in, and we will publish it. They are going to be self-sustaining in terms of the fees that they charge. So I think we should hold that out as a possibility.
The issue is how far we can go. You were talking about what you want to know about your doctor. There is the issue that if the doctor doesn't treat enough diabetics, all kinds of measures become "NA." The development of measures is still a challenge.
DR. CARR: When we had this conversation, we talked about the aspirational -- what are the kinds of measures we would like to create? But what's there -- how many patients in your panel that have diabetes is already helpful, predictive in some way. I think that was the theme, just to take what we have and aggregate it, juxtapose it in a way that leads to some level of assessment.
MR. BURKE: One of the items in the major findings talked about cost. The consumer's principal barrier about what it will cost is a combination, as you know, of premium, which is clear, and out-of-pocket, which is less clear. For each plan, there is typically a series of products within that plan, some of which have different levels of cost sharing -- in fact, all of which have different levels of cost sharing. Some of them may have different levels of provider participation which lead to that premium.
One of the ways to -- and this may be an additional recommendation, in terms of what it will cost me -- to encourage HHS to develop something like a treatment cost estimator which would permit the consumer making this independent decision about what product to buy let alone what plan to purchase -- to imagine, I'm going to have two visits to my endocrinologist and I'm probably going to have an emergency room visit in there somewhere. Based on the characteristics of the product I choose and this likely course of experience in the coming year, what can I anticipate in the way of co-insurance, co-pays, deductible, impact, so you can model not only which product to select, but what's going to come out of my pocket based on that.
DR. CARR: Actually, it can drive behavior, too. You could say, for my condition, if I go to an urgent care center or I go to an emergency room or I go to my PCP --
MR. BURKE: We call that skin in the game.
MR. SOONTHORNSIMA: That is done at the plan level, not at the health exchange level. That's the point.
DR. COHEN: I guess the point we're trying to make -- we recognize that it is done at the plan level by some plans, not necessarily all plans, but the exchange is the place where that information should be collected for all plans so that individuals can compare each plan as they need to make decisions. The insurance exchanges should have the capacity to provide this information for all plans. We're not saying that the exchange needs to go out and reproduce information that already exists. Everybody needs to give to the exchange this information in a standardized fashion so consumers can make better choices. That's the whole intent here.
DR. CARR: Walter is going to take us through this website.
DR. SUAREZ: The point I was trying to make is basically that this is already in the regulation. What we want to avoid is writing a letter with recommendations that are already in the regulation.
This is a page from CCIO, the Center for Consumer Information and Insurance Oversight, a summary of benefits and coverage and uniform glossary. It says basically that specifically the regulations will ensure that consumers have access to two forms that will help them understand and evaluate their insurance choices. One of the forms is an easy-to-understand summary of benefits and the other one is a uniform glossary of terms. Here's a sample of the form.
The concept is that there are a number of things already being included in the regulation that will point to the same recommendations that we're making. What I was trying to say is, how can we advance one step beyond, and not be behind, in terms of writing a letter that already covers what is in the regulation?
Here's the sample form.
DR. TANG: Can you read out something that is duplicative with our recommendation from your form?
DR. SUAREZ: This is the form.
DR. TANG: We can't read it.
DR. SUAREZ: Oh, I'm sorry. This is the actual sample of the form that is in the regulation, expected to be the one used to provide that information in the insurance exchange. The questions are: What is the overall deductible? So this is the payment part. Does this plan use a network of providers? Do I need a referral? There are a number of those kinds of questions. This is one example.
Beyond that, of course, there is the question in the letter about -- or perhaps the point that can be made is that in addition to the things that are already expected to be in the regulation or have been written -- actually, I think the regulation is already a final rule.
PARTICIPANT: For that one. There are few more implicit here.
DR. SUAREZ: The point is, in addition to the basic things that are already in the final rule that are expected by health plans to be provided through insurance exchanges, we recommend expanding the information to other areas that perhaps are not covered here. They are the kinds of things that are maybe noted in the recommendation.
DR. CARR: I think that it goes back to Larry's comment this morning about humility. There are a lot of great ideas going around. I think we want to be not naïve in the fact that people are thinking things along the same lines. On the other hand, looking at that, maybe the building blocks are there, but the functionality, I think, is the piece that we're talking about.
Matt?
MR. QUINN: One of the things that struck me as Walter brought this up -- the website says, provide an easy-to-use summary of this. The question is, who is saying it's easy to use? Would my mom find that easy to use? Has it been tested to demonstrate that it's easy to use for the intended populations? That's all this talk about user-centered design in this. It's starting with, who are the people who are trying to make these decisions, and designing tools that work for them, and knowing that they will work for them, and starting from there as opposed to this.
DR. CARR: Walter, thank you for pointing that out, because we don't want to look naïve. But I think you're right, we're getting to the intersection of what we are saying is something that is user-friendly, patient-centric that collocates the information in an intuitive flow of thinking that would align with how decision making occurs.
DR. SUAREZ: Just a point. I like very much the recommendations. I think it's probably more in the context that we understand that there are all these things already being done, but we believe that it will be valuable to have additional research to help understand how consumers -- these kinds of things that help determine whether this, which is supposed to be easy to use, is really easy to use. It's really on that line.
DR. CARR: It's getting to the finish line. It's kind of what we heard yesterday when we heard about end-to-end testing. We kind of do it, but we don't maybe always get to the finished line. I think if the finish line is defined in terms of the patient's experience or the member's experience, this letter gets there.
DR. WARREN: I think we need to remember that we heard from some very informed patients at the hearing, and they did not find this. This information was not available to them. Several of the people that testified had chronic illnesses for most of their lives. They now are patient advocates because of their own experience of not being able to find this information. Even though the information may be on the Web, it does not mean that people can find it or know how to use it. I think we need to be appreciative of that.
DR. CARR: How new --
DR. SUAREZ: This is the final rules for the insurance exchanges, once they get set up.
MS. GREENBERG: It should be. It isn't available yet. The question is whether this rule, if this is implemented, will then be available and what we can add to that. You're not saying this is now available. You're saying --
DR. SUAREZ: No, no. I am saying this is what the regulation --
MS. GREENBERG: Requires in the future.
DR. CARR: So it's timing. Was this available two months ago?
PARTICIPANT: (Off-mic)
DR. CARR: Judy's point is well-taken, too. There are pockets -- silos, we might call them -- of information that are known to some people very well and not to others. As we try to integrate -- the whole point of this is to be integrative, to think in terms of the end user. I think it's an exact playing-out of what's actually happening.
MS. KLOSS: Two comments. One is that certainly all evolution of this won't stop at the end of September. I think putting forward something that is forward-looking can help this evolve over time.
The second -- and I think it's innovative and timely, and I certainly am in support of the letter. I had another question. I'm sure, having just labored through this letter, you probably don't want my second question. Isn't there an opportunity for follow-on and to return to the original question, which is laying out some of the characteristics for consumer-centered criteria? Does the subcommittee see a phase 2 of this, returning to really 3A, expanding the specifications for consumer-helpful, patient-centered measures, and perhaps doing more work on that as well, which may not directly relate to exchanges or health plans, but may raise all boats as it relates to a lot of the public information that is being put out there that's less than helpful?
DR. TANG: I think the answer is yes. We thought about this as phases. In this first phase, we wanted to capture the timing. We ran into this brick wall, and so we wanted to blast through that one. We did some of the "What Would Be Useful in the Community" data hearing, the functional status stuff. We had it back in the very first time, when we did the quality measures. So we have had some of this conversation before. I'm trying to remember what was in those letters.
Of course, other committees are working on this as well.
The notion that there are better measures, I think, is out there. It doesn't mean we can't do that in another phase, as you suggest. We just saw a bit of a one-time breakthrough in the way we brought things together. What would you change about what you are even intending to do?
MS. KLOSS: It seems like there was learning that perhaps isn't captured here because of the focus.
DR. CARR: I have Bill, Len, and Bruce.
DR. SCANLON: Part of what I was going to say is what Linda was talking about. This is a goal. I think if the letter doesn't go out tomorrow, it's not going to influence anything, because what we're talking about is a much longer-term goal. The work that I was involved in at GAO that was looking at plan comparison started in about 1995. Things were incredibly primitive then. We're much further along now. We're still sort of in a very primitive state.
I think in terms of the issue of not looking naïve, acknowledgment of this rule would be one thing. To Jack's point about cost, there is this part of the exchange plans which is that they have to meet certain actuarial tiers. We have the metallic plans -- the bronze, silver, gold, and platinum. Actuarial equivalence tells you something, but leaves a lot not explained. You can have very different experiences between two actuarially equivalent plans, and two individuals within a single plan can have very, very different experiences. Even though their total spending might be the same, their cost sharing might be different. In part, it's an issue of network. In part, it's an issue of utilization management.
So there is that thing which is -- you're talking about bringing this back down to the personal level, and that's not where we are in any shape or form at this time.
DR. CARR: Len.
DR. NICHOLS: Let me first apologize to Paul for not showing up for the meeting. At least for this one, I did help plan it.
This may sound parallel to what I started with this morning. Do we have to link this to exchanges? Shouldn't every American have access to this? Shouldn't our role be to say, as a national committee, all Americans should have it, and, therefore, ultimately, it should be required of all plans, period? Then leave it to HHS, although we certainly want to take advantage of this current opportunity, to decide whether to use the exchange regs or other authorities that they actually possess outside of the ACA. The Public Health Service Act comes to mind. We're debating this next week, and I won't belabor the point. But the federal government can regulate interstate commerce. Insurance is interstate commerce. Whether or not the mandate is, is an interesting question. But insurance will always be. They delegate its regulation to the states out of convenience. The decision in 1944 led to a law in 1945 called McCarran-Ferguson. They can take it back, and they have, with the HMO Act, HIPAA, et cetera.
My point simply is, we should not aim so low as to link it only to exchanges. We should say all Americans should have access to this. I think this is the time to do that.
Then you could say, yes, you could use the exchange regulation process. To Walter's point, the reg he discussed does not speak to the consumer need. The consumer wants to know exactly what Bill said: How much is it going to cost me, being that I am a diabetic? In fact, I believe it is the case that the ACA requires HHS to give a reg to the state exchanges on creating a cost calculator as part of the condition of being a functional exchange. That cost calculator is supposed to precisely answer the question: What would it cost me to be in this plan, given what I know about me?
It seems to me that we should be a little more explicit about cost calculators, if that's what we're talking about, and second, we should be more general in our application of this to plans outside the exchange.
DR. CARR: I saw a flurry of hands go up. Bruce is up next. Bill wants to respond.
DR. SCANLON: If we do do that, which is a potential option, we have to change the recommendation because we have ERISA plans. They are exempt from HHS, the regulation. We would have to recommend that the Secretary seek from the Congress either statutory change or we write a letter to the Congress, because there is the issue of a large group, 160 million people.
DR. NICHOLS: We should ask the Secretary to share the letter with the Secretary of Labor. How's that?
DR. CARR: We'll ask the subcommittee to take these excellent insights back.
DR. NICHOLS: The federal government has power. They just choose not to use it.
DR. SCANLON: A major portion of that power resides in the Congress. To do the kind of change you are talking about requires statutory change.
DR. CARR: I am going to take the chair of the subcommittee to take back these incisive comments.
Sallie?
MS. MILAM: My comment is the same as Bill's, and also that I'm not sure of, outside of Medicaid, where HHS regulates plans.
DR. CARR: Bruce.
DR. COHEN: This is a theme that we have all been focusing on, the notion of patient-centeredness, consumer choice, how individuals make decisions. The context of this particular letter -- the first meeting I attended, actually, when I became a member of this committee, was talking about a scenario -- I'm a 65-year-old and my PSA just went up. What do I do? What plan is best for me? How do I choose my doctor? What are my costs? I'm the mother a juvenile who has gained an enormous amount of weight. What do I do in terms of making decisions about choosing plans, choosing providers, understanding the information that providers give me in terms of my choice?
This is the context for providing general information. I think we always felt that the next step for us was to develop more specific use cases, stories. One of the things we heard very clearly in the testimony was that numbers don't work for everybody. People make decisions in a variety of ways. What was really important to many consumers was how -- I want information about how other patients felt with their experience with providers. I want stories that I can relate to personally.
The goal of providing quality information to be more consumer-focused encompasses a variety of threads, and we thought this provided the context for future work in this area.
DR. CARR: I'm looking at our time. We have about five more minutes. I have Larry and then Matt.
DR. GREEN: A new topic at a different level. I want to draw attention to the first paragraph in the final comments of the letter. It seems to me that this paragraph needs a little tweaking and adjustment in two ways. One is, in the first sentence, suddenly we're back to talking about reporting of quality measures that matter to consumers, when, in actual fact, the letter is more about supporting decision making and reporting measures that help people make decisions. It just seems to me that that doesn't quite do justice to the letter.
In the second one, where it says "influence the design of health insurance plans," I don't think we're writing about redesigning health insurance plans. We're talking about redesigning reports that health plans do. I would just like to see that adjusted a bit.
DR. CARR: Matt?
MR. QUINN: A broader point and a specific point. Bruce brought up a really important point about the story and the narrative and how people make decisions. We heard over and over again about the effectiveness of sites like Yelp and online review sites, because they tell stories. They don't just show numbers. They tell stories that people can read. We heard from folks at Press Ganey who said that's the new generation of these tools, providing that information and then analyzing it for some quantitative metrics. That's how people make decisions.
The bigger picture is that these insurance exchanges are going to be the public face of health reform for many, many people. It's important that they be usable and that they don't just meet the word of their intent, but they are actually meeting the spirit of it. Whatever we can learn from the drug benefit rollout we can apply here. This is more complicated, in many ways. I think that this is a real opportunity, and we shouldn't lose it in that regard.
DR. CARR: Paul, do you want to summarize the takeaways that you heard and make sure that we got them all?
DR. TANG: I will make a comment about whether the subcommittee was naïve, because I think it was actually the opposite. Not only was the subcommittee not naïve about the rules that are required to set up health exchanges, but that's the whole basis for the recommendation. The only thing the subcommittee was naïve about is what the timing would be, since nobody is allowed to know that until it comes out.
I will also comment a little bit about what Len said. In some sense, the uniqueness of either the committee's opinion or the letter is not that the measures that are out there are not good. Everybody says and knows that. What we were trying to do was find something that was, one, a unique contribution, and two, actionable. Clearly we intend for these recommendations and the spirit to apply to all plans, all measures, et cetera, but we found a unique opportunity to do something actionable, if we got it in time. That's sort of why we left it there, in a sense, narrowed it that way.
One is, there is another opportunity where the federal government has a big role. That's with the federal employees' health plan.
Two, we want to emphasize -- actually, it's wording changes to make sure that, whether it's the provider, what providers are in that particular plan, or what quality measures you want to know about, it's all very local.
We want to emphasize more -- because I think it may have been lost a bit in this conversation -- that it's the process that we are worried about. How do you engage consumers along the process, including the testing, so that it is understandable? That was a major point. Probably we didn't emphasize it enough in the letter.
I think Larry had some really great suggestions in those final comments about what we really meant to say.
Did I miss some other things? We talked a lot about whether it's in the rule or not. But that was actually the point. We want it to be in rulemaking over time.
DR. CARR: Another fabulous discussion and deliberation. Thank you. Paul, we look forward to the letter tomorrow.
We're going to go out of order now and ask Linda to give us an update on privacy.
Agenda Item: Privacy Subcommittee -- Briefing from April 17-18 Hearing
MS. KLOSS: Thank you. I am reporting also on behalf of my co-chair, Dr. Francis, who couldn't be at this meeting, but will be with us via telephone at the subcommittee meeting tomorrow morning from Portugal.
The Privacy Subcommittee last November did a pretty comprehensive review of the work of that subcommittee from 2005 to the present and came up with a short list of focus areas that it might pursue over the next 12 to 18 months. Discussion brought it down to a priority of extending the work of the community health data report, specifically the recommendation under infrastructure that called for a privacy and security framework to guide communities in using local data.
That led to a hearing on April 17 that was titled "Next Steps for Community Data Use." Like all of the experiences we have heard about today, this was another one of those mind-expanding days of hearing, around four topics. We had a panel on "Beyond Data Use Agreements," calling for testimony on emerging governance models and the range of governance models, a panel on "Protecting Small Groups," a panel that was entitled "Using Results to Improve Community Health," but when you distilled what was presented, it was an array of partnership models or trust relationships that were used in a variety of contexts. The fourth panel was "Consumer Attitudes."
I think we were all struck by the range of participants at this, not even all from health care. We had Native communities. We had refugee immigrant communities, genetics projects, research ethics, anthropology, community-based research practices, bioethics, an individual who specialized in community and university partnerships. So we really took this learning from work outside of health care, including someone whose area of specialization was relationship dynamics.
I think if I could distill it down, we kind of went into the day thinking that we were looking at a privacy framework for this context and we kind of came out of the day realizing this was privacy plus stewardship. It was something quite different than privacy as we understand it in the HIPAA privacy rule context. Essentially, it reframed our thinking, I think, in four key ways:
• That we needed to look at this not from an individual view, how I feel about my data being used in a community context, but as a societal and community view, and that that was quite a different way of looking.
• There was a concept that was brought out over and over again during the day that there was a chain of trust. Trust, at the end of the day, was the most important issue that everybody who testified began with or emphasized in some way.
• We heard about models for participatory governance. We heard concepts of tiered release, where there was a different issue of how the confidentiality of data was handled when it was data about the individual versus the broader community, that the community itself had an interest and a stake, apart from or beyond the stake of the individuals.
• We also had a key concept that was brought out with regard to needing to look at that data, not as data for one study, but looking at more of a lifecycle-of-data view.
When we began to mull over what we do with this, what we moved at was preparing a letter, which is now in draft 3 form -- we thank all the members of the subcommittee and the staff who have participated and added great comments to get it to where it is today. We'll work on it in person tomorrow morning. Essentially, it has come to a letter that sets out a framework and recommendations for stewardship of health information when used by communities to improve local health. We have a stewardship framework that has emerged from some of those principles that we heard -- it's a six-point framework -- and a set of recommendations for NCVHS.
Bottom line is that this letter will be coming, I presume, to the committee for action in September.
One other point to make, and this is a matter of timing, as we just discussed with regard to the quality letter. Several of our subcommittee members who were just at the Datapalooza realized that some of the issues that we're discussing here are broader than the community health data initiative lens of our report. We looked at how to broaden it, but not blow it wide open. I think there's a balance there. We have acknowledged that HHS is leading efforts to encourage innovative uses of health data and certainly are strongly in support of that. But at the same time, the committee understands from this analysis that it may be time to develop and promulgate guidance on stewardship practices for use of health data outside the protections of the HIPAA privacy rule. While the letter is framed around this community initiative, there are implications of this letter that go beyond, and we're walking both of those forward in the draft of the letter.
Again, thanks to everyone who has contributed to this. We had two calls and, I think, over the course of a week, really evolved this quite well.
With regard to format, there is so much work that the committee has done before that certainly informs this. One of the suggestions was made to include some of that, but do it as an appendix.
I think the other discussion that has come up is that perhaps this letter then leads to a more formal committee revisit of the 2009 primer on health data stewardship, because when we reflected on that and looked back on it, it's very individual-centered and certainly is consistent with the HIPAA privacy rule, but it may be time to look at that and re-advance that against a new framework, a new model.
That's my report. We'll look forward to continuing this discussion.
DR. CARR: Very exciting. Two things. One is that part of the charter for the new workgroup on data includes issues of privacy, so I think that will be a perfect kind of segue into that.
The second is, you said that the six principles that are developing -- do you want to just name them?
MS. KLOSS: I'd be happy to. Stewardship framework, participatory governance -- and we have defined that as, the rights and responsibilities with regard to how data are collected, managed, and used should be made explicit -- and then a series of bullets under that that speak to sponsors or community leaders for these kinds of projects.
The second is accountability. It's there that we have woven in that concept of not only accountability for this study, but accountability for the lifecycle of data. The complete lifecycle of data should be managed, from initial collection and use to dissemination of results and, if appropriate, the safe archive or disposition of raw data. Then there are a number of bullets under that, again trying to speak to or frame the responsibilities of sponsors of these kinds of studies.
Third is openness and transparency. Again, the rights, responsibilities, practices for data collection, management, protection, and use should be available to all stakeholders, most importantly to those who are subjects of the data, that tiered issue, and then bullets under that.
Integrity: We did get into the issue of trust in the data and the trust in the relationships and the roles of the people who are handling the data. That's kind of a multilayered set of principles, both data integrity and process integrity, if you will.
Five is privacy, confidentiality, and security, the core practices that we would expect sponsors to have in place, or stewards.
Six is consistency. This is a concept that care be taken to ensure that effective practices are consistently followed. Thus, stewards are encouraged to put in place their chain-of-trust framework. There are some bullets under that.
DR. CARR: Great. That's good.
MS. KLOSS: Special thanks to Walter, who identified out of early drafts of the letter seven principles. I actually mashed two of them together.
DR. CARR: I just pulled out the primer. You're right. There were four. One was about individual rights, but the second one was responsibilities of the health data steward, where there is alignment -- I like the way you have done it -- and then security and safeguards, then accountability, enforcement, and remedies.
Have we had any intersection with Joy Pritts on this? Hearing this morning all the work that is going on there around privacy, governance, and all that, it would be great to share that or get some feedback.
MS. KLOSS: I did take note of her mention of that in-person meeting on July 11, and I will share that with Leslie, as she is our representative to the tiger team.
DR. CARR: I think what I heard today is that they want to know what we are working on. We need to push stuff out to them so that again, in all humility, we all know what we're all working on, and if there are connections there, we ought to be making them. That's very good.
MS. KLOSS: Any comments from others who were at the hearings or participated?
DR. CARR: Jim, just to update you, we just heard a nice summary of the hearings that were held in April on privacy. Although they were talking about the community privacy initiatives, as we move into a larger space, these principles are going to be addressed for the larger group. That's a good intersection with the new data workgroup.
MR. SCANLON: That will fit in very nicely with the new group, the data access generally.
DR. CARR: With that, why don't we jump right into this?
Agenda Item: New Working Group on Data Access and Use -- Plans and Status
MR. SCANLON: I think you are all familiar with what we're asking the new group to focus on. It's kind of a hybrid group. It has at least a third of the members from the full committee and then remaining members who are consultants, following the model of the Health IT Policy Council and the Health IT Standards Council.
Let me give you a little bit of background.
We talked this morning about some of the efforts that HHS is making to get the data that we do have out beyond our usual research community, statistics community, and so on, to plans, providers, consumers, patients, community-level analysts more generally. Many of you already are familiar with the kind of data that we have. It's useful for many things, but it's not a cure-all and it's not a panacea. You can only do certain things with it.
There is a lot of data that we have that is of the indicator type, statistical information or estimates in tables and so on -- percent of uninsurance, for example. We have other data that is claims data or individual record data, like Medicare or Medicaid, Ryan White, and a couple of other programs, client-level data. But again, we don't release that except for research and statistical purposes or in some of the instances we talked about this morning relating to ACOs, where there are some provisions allowing them to get access for certain kinds of information.
The other kind of data that we have -- it's not the data that the committee deals with normally -- is operational data or administrative data that our agency might have. It's not really quantitative data. It's not that you can analyze it statistically. It's more location-based data. In other words, it's where all of our community health centers are, for example. It's where all of our maternal and child health resource grantees are or family planning or mental health and substance abuse, or all of our NIH grantees or all of our other grantees. So it's administrative data. It's largely public data. It's not the kind of data you would analyze statistically, though certainly you can. But from the point of view of geographic kinds of information systems and maps and location-based apps, that's the kind of data that I think folks like.
We have, for example, one app -- and this is data only in the sense that it's location-based and it might be useful to individual -- we have one app that tells you the location of the nearest cigarette smoking quit line. You're walking along and you're thinking you are going to try to stop smoking. It's based on your zip code, and it tells you where to call. We only have four of them, so it's an 800 number. Nevertheless, you think it's location-based.
There are all sorts of things like that. Where is the nearest community health center? What I do for mental health crisis kinds of issues? We have all kinds of directories like that. Putting them on our websites and making them available in brochures is nice, but that's not really getting the data out that far.
When you think of the quantitative kind of data we have, the programmatic data, and this other kind of location-based data, the idea is to get as much of this out for people to use for choice, for decision making, for information in general.
What we are doing with the new group is to try to see to what extent we can bring the developer community for the apps and the technology -- folks who make a living trying to do this -- together with our data folks and all of us to see if the combination can produce something in terms of advice for how HHS should go. We can at HHS say we know what consumers want, we know what patients want, and we know what communities need. But we really don't. We have ways of getting this, but we would rather deal with people who actually know and who make a living in these areas.
So that's really the purpose of the new group. We have a long charter. We took that wording, Todd and I and others -- in our classic wonkish way, we had to develop a page-and-a-half-long charter. The main thrust is the following. We put together folks who know the applications, know the technology, know local public health issues or patient issues or consumer issues, provider issues, quality issues, plan issues, and so on, in terms of the kind of data they might want or need that we have. Part of this is a process whereby we would brief the group on the data holdings that we have. We would take them through each of the major data systems -- all of the CMS, all of the NCHS, the CDC surveillance, and some of the other data and so on, and these other non-quantitative data holdings that we have. We have to do it in digestible portions. If we go quickly to all of these odds and ends of information systems, I think it would be overwhelming.
But we would begin to brief the new group on all of this. That gives them an idea of what we have and what we're likely to have. Then we would, through their own experience on their own applications, ask them to advise us on -- well, we would tell them the way we're getting the data out now, which you're all familiar with, and the we would be looking to them to give us advice on where we could make some improvements, for example, or how we would and this is exactly related to the community data level and so on, but it's individual data as well and is patient data and consumer data -- what consumers and patients, the provider community, plans, the public health folks would really like to have or what would be useful to them. We're asking them, in a sense, to be our bridge to those communities and then to look at what we have and give us some advice about, through the technology and the data presentation itself, what -- is the county the best level? Is the hospital referral region the best level? Is the state the best level? There are different ways to do this. All of you know that the more detailed level of geography we go, of course, the harder it is to have enough cases and to make the estimates. We run into privacy issues for disclosure as well.
But the folks who do apps do this all the time. It's a zip code-based model or it's a census geographic code model. We're asking them to mash these ideas together and to give us some advice in terms of what we would do to start improving.
We might start off with some fairly simple things. They could look at our websites. We'll clearly brief them on the data holdings that we have. Obviously, any member of the community who wants to sit through all the things we have is welcome.
We're putting together some tools. You have the guide to HHS surveys and major data systems. We're also updating our directory of HHS data systems, which is a much bigger document. It's all of these administrative data systems that I was talking about as well. Then we have yet another inventory of all of those other non-quantitative data, directories and so on, that we could make available.
Number one is, based on how we can familiarize them with our HHS holdings -- and possibly other agencies, too. I don't think there's any reason -- we now have, as you know -- we'll have them look at healthdata.gov. This is where we are posting all of the data sets and tools that we have, more or less in an open fashion for developers to use. Again, we don't provide any individual-level record data. It's wide open. It's basically public. We do have methods of giving data out on a restricted basis, but obviously you wouldn't be interested in -- so you could push the geography level, but you would never want to get to the point where your identifying numbers are small enough to identify someone. Otherwise, that's the end of it for all of these initiatives.
So that's what we would -- we also ask them, just generally, based on their knowledge of the industry, where things are going in terms of social media and Web-based services, that sort of thing. Again, with attention to the data holdings we have, what recommendations would they give us in terms of how to move forward?
We might give them some specific questions to answer as we move along as well.
Again, the perspective here is, quite consciously, to try to match up this technology sector with the information all of us deal with every day. We would then use them, basically, as we do the committee, fully, with giving us advice on how to proceed there.
In some cases, I think they would be just be reacting to plans or reacting to a resource. But I do think we want to ask them to think through, from their perspective, what would make more sense. For example, besides the healthdata.gov, where we post, in machine-readable format, our data sets and tools, we have the Health Indicator Warehouse at NCHS. We have about 1,100 indicators or so. I think they go down to the county level. We could ask, is this useful? Patrick Remington, who is a member of the group, is very familiar with that area as well. Of course, Bruce does this for a living, too, in Massachusetts.
They are mostly health indicators. We could look at access and health-care quality measures as well.
Again, we need a better gestalt and then we need some very specific advice and applications. Rather than just rely on what folks at HHS know about this, I think the idea here was to actually get the folks who spend their daily activities doing this.
In short, that's the charge. The first step, I think, would be that everybody gets familiar with everyone, orientation to the full committee, review the charge. This is more or less the charge we agreed to with Todd and others. If there are things we're missing, we could certainly entertain that. But the basic thrust, I think, would be along these lines.
Then we will start, probably at the September meeting, with a presentation on our holdings. We'll try to do it in a way -- I think many of the folks in the group are pretty familiar, but I think there are some areas that they may not be familiar with. So we'll get everybody up to speed.
Then I think we would start looking at -- the low-hanging fruit idea is always nice -- look at healthdata.gov, our indicator warehouse, our ways of disseminating this information. There are privacy issues. As a matter of fact, you can only go so far on some of these things. I think with the Medicare data, particularly, and Medicaid data, every step forward is met with a challenge that that's pushing the envelope for disclosure as well.
But there are ways to do this. It might not be posting the data publicly necessarily. That's probably never going to happen. But there are ways to get at it, on a restricted-access basis, without -- and there are ways of modifying the data so that you remove dates and so on, things like that that minimize the potential for disclosure.
So that's where we are now. It turns out that in this regard HHS is probably ahead of some of the other federal agencies. But I can see where we can include environmental data, probably, environmental health data. We could probably, down the road, look at housing and transportation as well. But I think we would kind of like to get the health data that we do have available.
A lot of the census data, depending on what level you can make it available, is good contextual information on population, on age, on income and SES. You can get a lot of information about your neighborhood or your county or your city by mashing up some of these things. But you have to make it easy. You can't ask everybody to be a researcher.
Let me stop there and see if there -- that's the gestalt, at any rate. I think we're just going to have to do it step by step, Justine, as we go through.
DR. CARR: Actually, I thought we would go through who the new members are. Leah Vaughn is here. Lee is from the Health Policy Group. We welcome you.
Kenyon Crowley is here. Bill Davenhall will be here this evening. Ken is from the University of Maryland. Bill is global markets manager, Environmental Systems Research Institute.
Many folks know Chris Gibbons, who has testified here before, from Hopkins. He won't be able to join us tomorrow. Similarly, Patrick Remington cannot join us tomorrow, I think. We're not sure. Kalahn Taylor-Clark will not.
Then Bill Davenhall will be here tonight. Mo Kaushal is coming in, and Joshua Rosenthal just testified recently --
MS. GREENBERG: I think he's going to be here.
DR. CARR: Yes. Then from the committee, it's Paul, Walter, Bruce, Leslie, and myself.
I think we'll tag onto the full committee meetings. Whether we do something by a call or a webinar or something in the summer -- we may.
MS. GREENBERG: I just wanted to say, obviously this first meeting will be tomorrow afternoon. I was asked about this. Of course, this is an open meeting, like any of our meetings. Any of the members who are not actually members of this workgroup but are interested can stay for that.
Similarly, whenever we meet in conjunction with the full committee, any members of the full committee are more than welcome to participate, and even teleconferences, I think. The only exception would be if we were bringing the group in for an in-person meeting that wasn't associated with the full committee. Our resources might restrict that. But even then, we could have a link or by phone or something.
MR. SCANLON: If the workgroup would want to have a hearing or a public meeting where they bring in others
MS. GREENBERG: Yes, we do have some resources for that.
MR. SCANLON: We'll try to work as much as we can, teleconferencing and webinar. The two workgroups it has to do with work through the full committee. Otherwise, we can't create -- we can have workgroups, subcommittees, as long as they work through the full committee.
It's a bit of an experiment in the sense that it's a workgroup. We have extended the committee member resources through this workgroup mechanism.
I think, Paul, you have seen that operate pretty well under the Health IT Policy Committee.
You never get the full participation of everyone who is on the group, but we made a lot of progress that way.
DR. CARR: We're grateful. Todd will be here tomorrow morning, I think, at 11:00 to provide further insights and blessings.
Larry?
DR. GREEN: Can you just say a little more about your current thinking about the functional relationships between the new workgroup and existing subcommittees?
MR. SCANLON: I think we envision them working like -- we modeled it after those others. It's a bit of an experiment. The new working group -- we're going to see how this works. In essence, it's a working group under the full committee. I don't necessarily know how this is going to work, with all of their advice that they necessarily have to come through. I think we may use them, to some extent, as a lot of the agency heads use them, as a sounding board. This is a very hardworking committee. A lot of the other agency FACAs don't do the level of sophistication and quality of work that this group does. You basically come in twice a year and the director tells you something and you say, that's fine. I'm exaggerating. This is the other extreme. You are definitely a different mold here.
But I think there will be some instances where we just need some feedback on a plan or we need some thoughts on directions to go in. I don't think it will be in the form of formal recommendations. I think it will be a sense of the expertise. That's where I see some of the products coming from.
There may be other products that are policy-related where I think they will have to come -- privacy -- through the full committee.
We're just going to experiment, to some extent.
Does that make sense? We're going to have to experiment a little bit.
MS. GREENBERG: Obviously, we have talked about this. I'm learning, too. You're making it up as you go alone.
Formal recommendations, I think -- and that's what the charter says -- would go through the --
MR. SCANLON: Yes, I think if it's a deliberative recommendation, it really needs the full committee. That would probably have to go through.
MS. GREENBERG: It would go through this committee.
MR. SCANLON: It's more the apps --
MS. GREENBERG: Informal feedback, I guess.
MR. SCANLON: It's the sense of expertise or knowledge from that community about where to go. It's almost inimical to the very idea of this kind of work to have a lot of clearance. But anything policy-wise or --
DR. CARR: But I think you said it right. When you think about the spectrum of advisory committees, it will be a blend of this, on things related to this committee, and otherwise kind of a reaction group, you think?
MR. SCANLON: Yes, and they will have to find their sea legs, obviously. On the technology side of it, for example, we have wonderful expert folks in HHS, but we really don't have -- nobody in HHS makes their living developing apps. We need folks there, and we have to rely on their advice. So we're looking for "yes, that sounds like a good idea," or "that would make no sense." There's no business case there. We're kind of looking for that kind of reaction.
That's the mold of the other FACA that an agency head might have -- "we're thinking about this. What do you think about it?" It's not a formally developed set of recommendations. It's "yes, that's a good idea," or "that's not the way to go," or something like that. If it looks like something is more controversial or requires more deliberation, then it has to come through the full committee.
MS. GREENBERG: I think what Larry might be pointing to -- earlier today, we heard from the Quality Subcommittee. There clearly are connections there in what they are recommending with this new working group. Of course, Paul is on the new working group as well.
But I think, in the spirit of never letting this committee rest, I would say that there may be some opportunities for some collaboration between the working group and an individual subcommittee, and where those opportunities exist, we should try to foster them.
Justine has graciously agreed to chair the group. I would expect that she would come to full committee meetings and report on the group, even if the group weren't meeting at that time, so you see how this is going.
For me, it's very exciting subject matter-wise. But as a student of the national committee for most of my career, before I was actually involved with it, this was a standard way that the committee operated back in the 1970s, with what they called technical consultant panels. That's how we got the Uniform Hospital Discharge Data Set and many of the really basic foundational standards that the committee was responsible for over its history and still have relevance.
By the time I got involved working with the committee, that wasn't possible anymore, to convene those groups. From a policy point of view, it wasn't allowed. Then it became allowed, but, from a resource point of view, we weren't really able to do it. Now we're back -- there's nothing new under the sun -- a very cutting-edge kind of topic, but back to a process that we have used in the past way past, when none of us were really involved.
I think we'll really be learning as we go along. This is a working group of the full committee, and I want the full committee to feel engaged and to interact with the group, because I think there will be benefits on both sides. We invited the members to come to the full meeting if they wanted to, if they could bear it. We thank those who were able to. But this time, obviously, we didn't give them much notice. But I think it's also useful for them to see how the committee deliberates when there will be recommendations coming before the group.
I encourage you all to reach out to our new cousins. Certainly I hope everyone can stay for tomorrow.
MR. SCANLON: If I could just add a bit, I can see, in terms of what the committee has already done and would be doing, that some of that will feed into the workgroup in terms of the community data, for example, all the privacy data, I think, and some of the other areas as well -- quality. I can see that certain directions that the new working group goes would feed into these groups as well, where a more systematic, comprehensive look would be needed. Really, it will be the challenge to us here to keep the relationship between the two going.
Obviously, any member of the full committee can attend any part of the meetings of the workgroup.
Again, just as a practical matter, the original request was to create a new advisory committee to focus on this. We really thought this didn't make any sense, given the NCVHS. But there was no way we could add nine members to the NCVHS from these areas. So what we agreed to -- and I actually this idea is stronger than creating a whole new committee -- is this hybrid that we kind of developed, which I think could actually work quite well. I think it benefits from all of the thought and the expertise on the full committee, as well as the new perspectives that we really had to reach out for.
DR. GREEN: This is really one of the most exciting developments I have seen since I have been on the committee. I'm very enthusiastic about it.
One of the things you learn practicing medicine is to listen really hard to side, parenthetical comments that patients make, because they are usually very, very rich with information. They are telling you want they think you want to hear, but then when they make these side comments, often the truth comes out.
So I'm going to accuse Jim Scanlon -- I think I wrote this down exactly -- he said, "It's almost inimical for this type of work to have clarity" --
MR. SCANLON: Clearance. But clarity is also true.
DR. CARR: If you make a PowerPoint and cover your main points, clarity is never a problem.
Vickie?
DR. MAYS: I know it is just starting. One of the resources that actually is an incredible resource -- and he's probably going to kill me for offering him; when you're not here, that happens -- is to think about NIH, and Bob Kaplan, as our person, is actually the best to do that. His office actually does a lot of development of apps, particularly around health interventions, as well as access to data. This summer -- I'm going to actually participate in it -- he has a weeklong mHealth training. It really is doing this exact thing, where you are looking at the development of apps for some of the health data.
The other thing is that NIH is very interested in this as well. My center that just got funded, my disparities center, is all in the issue of developing apps. We have actually done some community work -- because it's all about disparities -- of how it is that racial and ethnic minority groups want to access their data, what can be developed. Interestingly enough, we will actually have some competitions where the community is going to come in with our engineering and computer science students and come up with ideas, develop these apps. For us, it also is, how are we going to push some data out. The whole center is based on using technology. NIH was very hot on a lot of this.
There may be some other projects around. This was one of the things that, when we read our reviews, they were very excited about. We're working with the Wireless Institute and the Nanotech Institute to get a lot of this stuff out the door. But the community is driving it, actually.
MR. SCANLON: And I might add -- and again, we focus a lot on apps -- some of this is just getting the data we have -- it's probably never going to be for your iPhone, but I could see that some of this information would be used for local public health purposes and for quality, for access, to underserved kinds of analyses, for workforce shortages. It would be useful for policy and decision making, even if it's not simply an app. In fact, that's probably where the payoff would be. Where we have tremendous resources, have tremendous expense of data, and not to have its reach its full potential is almost a cost in its own right. That's where we're trying to think of how to do this.
Again, there are limitations. I mentioned privacy before. The further we push this out, the more we'll have to think of innovative ways to do this. But I think we can really come up with some good applications of the first kind, and later we can expand it to other agencies. I think environmental health would be -- EPA, for example, would be a good partner as well.
But that's kind of where we are going. Then we just need advice on healthdata.gov and the Indicators Warehouse and so on, about how to make it -- they are definitely not consumer-friendly. That's not what they were intended to be. They were meant to be developer-friendly and analyst-friendly. Are they? We'll have to see.
DR. COHEN: Jim, you stole essentially what I was going to say. I want to just add the focus of state health departments and community-based organizations. The data are out there. They are just not easy to find and not particularly user-friendly. We have spent an enormous time and many states have -- developing our own Web-based query systems. For me, this is an opportunity to get back into pushing the feds to help states figure out how to do this more consistently, not only focusing on the traditional HHS data, but resource and asset data at the community level, which is really public health data writ large that we haven't really incorporated into our thinking.
So I applaud the notion of thinking about using other agencies' data. I think it's the key to success of our local public health interventions.
We spend an enormous amount of time putting census data in our Web-based query system, because for our users at the community level, when they are writing applications to get grants, the first thing they need is easy access to that information. So all this contextual information and less traditional public health information really, I think, is going to be the key for providing access to useful information for communities and state and local governments for making decisions.
DR. CARR: Excellent.
Jim, thanks. We look forward to it and we look forward to working with our new colleagues. Terrific.
Now we have a chance to have a bit more deliberation where we are headed, where we are going. But before that, I alluded this morning to some additional comments I wanted to make.
I think you have heard, and we don't have to say, how outstanding the Standards Subcommittee was yesterday, because I think we have heard it from many sources. It truly was exceptional. In the morning we covered lessons learned from 5010, preparation for the implementation of the operating rules for eligibility and claim status, a DMSO update, and the ICD-10 transition.
This afternoon we would like further discussion as a full committee around the administrative simplification and the ACA assignments. As a way of teeing up the discussion, I would like to review challenges that came up since our last face-to-face meeting related to the naming of the authoring entity for the remaining operating rules.
As you know, we had a teleconference on May 4 and recommended CAQH CORE as the authoring entity for the remainder of the HIPAA transactions. We also recommended that CORE and WEDI collaborate to ensure industry participation in the process and, finally, recommended that the SDOs also take an active role.
The development of these recommendations came about through the ever-diligent efforts of the Standards Subcommittee, working tirelessly between March and June meetings in order to help the industry and the Department meet the very challenging deadlines presented in the Affordable Care Act to adopt and use operating rules, identifiers, and other mechanisms to quickly achieve the benefits promised by administrative simplification.
An unintended consequence, however, was an industry perception of lesser transparency than that to which they have become accustomed through NCVHS when we convene, as we did yesterday, face-to-face with full industry representation. While extraordinary efforts were undertaken by the Standards Subcommittee to reach out individually to key stakeholders, incorporate their input, the committee recognizes the concern about transparency that emerged, and we want to ensure the industry that NCVHS is and continues to be an advisory committee that encourages participation by all industry segments and provides a level playing field for organizations and stakeholders.
To ensure that misconceptions are dispelled, the NCVHS will continue to adhere to its process of soliciting comment, discussion, and discourse within the public hearing venue and other established vehicles, such as the submission of written comments to NCVHS for its consideration, so that total transparency continues to be maintained.
I'll be even more explicit and say that we will take a leadership role in fostering the transparency and industry participation that's required in the statute for the adoption of operating rules -- is adhered to and fulfilled by any designated authoring entity. We may from time to time make additional requests for information and/or documentation from any authoring entity to ensure that every good-faith effort is being made to achieve broad participation.
NCVHS will work with authoring entities to develop a process for revisions and/or appeals made by industry for changes to operating rules, similar to that undertaken by standard-development organizations. We wanted in particular to take this moment to reflect that we tremendously value the feedback. We value not only the importance of being collaborative and transparent ourselves, but also the importance of being a model of collaboration and transparency that others will aspire to and follow.
With that said, we would like to turn the attention of the full committee to the challenges we have in front of us and the industry, including multiple important and time-sensitive assignments from the ACA, as well as aggressive implementation timelines in an industry that is experiencing a convergence of requests from all sectors that are costly in time and resources.
I feel like at every meeting I'm commending the unbelievable efforts of the Standards Committee, because they are extraordinary. As we have been working through these various things, it has led us to kind of reflect on we're running a marathon like a sprint, in many ways. The end is not yet in sight. A lot of the discussion that came out in our calls was about whether we should be thinking about a couple of things.
One is, when there's competition for our time and energy, should we be prioritizing?
Then also in some of these things, although they fall to the Standards Committee -- and I'll mention claims attachments -- it's not just about standards that go into the content of the claims attachments, but it's really us thinking more broadly. Claims attachments were first put forward, I think, in 2005. The world has changed in the last seven years. Now that we have 48 percent of hospitals and one in five providers on EHRs, there is a lot more digital data that's available that may call into question the traditional concept of a claims attachment. Similarly, as we have been discussing today, the whole issue of privacy what is the granularity of the information there? Where is it going? Who sees it?
Finally, although I agree that we will know later this month a little bit more about what the Supreme Court says about the Affordable Care Act, in many ways -- certainly in some states -- accountable care is a reality approaching a reality. It's my reality, anyway. As we move forward and we try to be our deliberative and looking-at-where-the-puck-will-be selves, should this committee be thinking about new models of care, and even whether you need a claims attachment in the new health-care world.
So I wanted to just throw out those ideas and turn it over to the committee. Let me just say that over the next 45 minutes, we might want to tee up the kinds of things we ought to be thinking about. We would like to have an Executive Subcommittee retreat for a day this summer to further refine that in preparation for a larger full committee retreat, as new leadership comes in, new members.
So today's work, in the next 45 minutes, is to put out some ideas about how we might go about our work. What is the space we should be in? We heard a lot this morning from ONC and CMS and the role that we have played successfully and the role we might play -- not the three-times-a-week tiger team approach, but taking it up to the 15,000-foot level.
Those are just some ideas. Let's use the next half hour to throw some ideas out and the last 15 minutes to kind of tee up some themes that we will carry through in the executive retreat and planning for the year ahead.
With that, I invite Walter and Ob -- they led the hearings yesterday on what's on the horizon. I also invite Bill to give his perspectives. Then we'll open it up to the rest of the committee.
Agenda Item: Standards Briefing on ACA Section 10109
DR. SUAREZ: In a sense, it is hard to frame this because the topic of Affordable Care Act Section 10109 is very specific, very concrete. It asks us to look at five things and see if there is any opportunity for standardization. Those five things are very small and very concrete.
One of them is provider enrollment, the process of enrolling providers in health plans. Is there an opportunity for standardization?
Another one is claim edits, the edits that health plans do as they receive health-care transactions, and the decisions that they make based on those edits. In many cases it's a rejected transaction because this particular edit stopped the transaction. There was an error. But there is inconsistency in how those edits are done and which edits are done. So there is a question as to whether there is an opportunity for standardization there as well.
Then there is the balanced side: If we standardize the edits, what happens to program integrity, as Bill will point out, and what happens to fraud and abuse and other things that may be easier because everybody knows how to process and try to game the system or something like that.
Before I get into that, I think what we started to see -- and I think it has been emphasized by what we heard yesterday in the hearing, but we are hearing from the reports from the other subcommittees -- is that we have an opportunity to step back and step up, if you will, and look at things in a more holistic way and realize that, while there are some immediate priorities that we have to address claims are still going to happen for the next X number of years, five years, three years, maybe ten years between now and the next few years, we will still have claims and enrollments and premium payments and all these processes. How long the transformation of the health-care system will take us away from the traditional way of payment to a brand-new mechanism in which there are no claims and there is no enrollment or there's enrollment in a different way -- yes, that's an important step.
I like the point that was made earlier by Robert from CMS. I think CMS is looking at that that way, too. They are stepping back and stepping up and saying, what are we looking at here? Are we looking at 2017, with the current version of how we do business, or are we looking at 2017 with the new way of thinking of health-care delivery and payment?
In many respects, we have to look at both at the same time. Are there opportunities for current improvement in standardization and the benefit that standardization brings? How, at the same time, can we think about the new way of doing business and what kind of standardization might be needed?
In my mind, there are certainly a number of big themes. There are several themes around continuous collaboration, openness and transparency, enhanced communication and outreach. That will continue regardless of what direction we go. But there's one theme that I think is coming up quite a bit around standardization, and that is, in my mind, the convergence of the administrative world with the clinical world, the fact that we are seeing more and more the same types of standards that have been used in exchanging information for administrative purposes played against the clinical data exchange standards.
The best example, of course, is claim attachments. In the old, ten-years-ago world, claim attachment was the attachment of some medical information that was sent on paper, fax, FedEx, or whatever other mechanism. Nowadays, we're talking about the claim attachment as a clinical message that should use the same standard that providers use to communicate between themselves, between two EHRs. If we have a different standard to submit the attachment to a claim for payment purpose than the one that we use to exchange data for clinical care -- if it's the same source, the same data, but now sent in two different formats, that doesn't seem to make sense. It's coming in many cases from the same source, which is the EHR. Not all claim attachment data comes from EHRs, but a significant amount of it.
So that's one megatrend, if you will. It's really this progressive convergence between the administrative world and the clinical world, and the fact that there are many transactions where we're looking at the nine HIPAA transactions, we're looking at four or five more transactions that are beyond HIPAA, and all these administrative transactions need to be played along with the standards that are being used for meaningful use, for electronic health records, for health IT, for HIEs.
So that's number one, I think.
Number two is this point about having to balance between what we have as current issues -- today we have 5010 and ICD-9, and coming up, ICD-10. We have the standards, the transactions. There are some opportunities to improve the standardization of those, making sure that we benefit from the standardization of those. As we said in our HIPAA report, we have achieved some, but we have still a long ways to go to achieve the full benefits of administrative simplification. So today and in the next few years, we still have the opportunity for some of that, and at the same time, trying to think of these new forms of insurance exchanges and health reform. What are the implications for the standard transactions? There are still going to be exchanges of data, of course. Whether we go to transactions or simple exchanges of data, or however we call it, there is still going to be data being moved from one place to another via some mechanism. So we have to think strategically about how we divide the time.
The last point I want to make is that clearly we, based on that, need to identify priorities and decide to go along with those and move along with those. Part of the issue that we have struggled with in the Standards Subcommittee is prioritizing the things that we were called to look into from the Affordable Care Act. Certainly that was one of the hopes that we had in bringing to you here some of this discussion. We have five major areas or domains, five topics, that the Affordable Care Act suggested that we should look into for potential standardization. Those were provider enrollment and standardization of claim edits and standardization of audits being done by health plans and the possibility of bringing the property and casualty insurance, which includes workers comp, into the same type of standard that HIPAA requires, so that we don't see things like, when I send a claim to a payer, I have to use 5010, but if I'm sending it to workers comp, they are still on 4010, so I have to dumb down the transaction to 4010. In the future I'm going to do ICD-10 with the standards, but workers comp might not go to ICD-10, so we still have to do ICD-9.
Those kinds of inconsistencies are the kinds of issues that we need to look into.
We developed a couple of strategies and discussed and have debated them. We wanted to bring them back to the full committee for consideration.
By the way, in the process of looking at these five areas, we did have a hearing in November and heard in each of the areas from different perspectives about what some of the issues are, some of the opportunities for standardization, the relative importance and significance of some of these areas. Out of that, in March, we submitted a letter to the Secretary recommending that we need to take some time to look into the details of each of these topics and develop a strategy -- we noted that we would be developing a strategy by June, basically, to bring back to this full committee meeting -- on how HHS can move forward with the identification of standardization opportunities in each of these areas.
One of the options of the strategies was that maybe we can organize smaller groups. We have created a workgroup now, the first workgroup in NCVHS activities. We could organize something like tiger teams, like HIT standards and HIT policy committees are organized and are known to do. Each of those tiger teams will involve people from different -- not just committee members, but we'll bring in subject-matter experts, stakeholders from the industry that are knowledgeable and represent different perspectives on each of these topics. For provider enrollment, we'll bring representatives for the providers and the payers and other groups. Similarly we would bring people from different perspectives in each of these other topics.
We would have those groups do the research and come back to the committee with a report -- we found this. There are clearly some opportunities. There are some benefits. These are the concrete benefits, and here is the status of the standards, or lack of standards. This is what we recommend.
So that's one possibility. Certainly the idea would not be to launch five different tiger teams all at the same time and give a year to all of them, but progressively identify one or two topics and start moving along with those. In some of the topics there is already a lot of research that has been done in the industry. So they might take three or four or five months to look at, develop, and come back to the committee --
DR. CARR: I do want to leave time for discussion. We can get into what the details would be. We could do tiger teams. We could do --
DR. SUAREZ: So that's option one. The idea was to organize some tiger teams, again progressively.
That was the end of my talk. Ob?
MR. SOONTHORNSIMA: I'll stay at a little bit higher level. Yesterday was very, very rich in terms of content, and they all flow very well. In a nutshell, personally what I took away from the discussions and the presentations was the following.
I think we're being asked to really do some reality check in terms of what's going on in the industry. A lot is being asked, and a lot of mandates and initiatives. The industry is overall, regardless of what aspect of health care -- everybody is trying to improve quality, access, and cost of care -- but lots of mandates, lots of competing priorities.
At the same time, we also heard of different ways, different solutions, different ways to tackle all these different things, such as how we do effective testing.
By the way, testing end to end -- all day long, all we heard was end-to-end. We have been talking about end-to-end testing forever and ever.
But there isn't a silver bullet. Everybody has different perspectives.
While we are trying to complete all these different mandates and initiatives, we also have different means of testing. We all recognize that testing is not effective today. That's what everybody is saying.
Thirdly, because testing is not effective, what we heard also is that the value of these initiatives isn't being realized, in a nutshell, let alone that we have yet to complete all these mandates on time, on budget. Also ensuring that the quality of work, when it's done, whatever those mandates are -- how do we ensure that whatever the work is does not impact the industry negatively? We heard a lot around provider cash flow issues as a result of 5010.
That gets back to the issue of quality assurance testing. This sounds like a broad, broad concept, a very simple concept. But they are very difficult to implement. How do you do end-to-end testing?
That's kind of the backdrop, what I heard. What Justine and Walter tried to tee up a little bit maybe I can summarize a little bit better -- in a different way, not better, excuse me.
Maybe three things we can consider. Yes, we do have to take care of ACA, what ACA is asking us to do. But the second point is, how do we also consider all these changes -- and "convergence" is a good word, because they are converging. If you think about the major issues and opportunities around delivery models and payment innovation, payment reform -- we heard about ACO, we heard about bundled payment, and so forth. That's an opportunity, as well as a challenge.
If you think about quality measures -- we heard what Paul and the team talked about -- if you think about the transparency initiative -- how do consumers consume health care, and how do they select quality providers and plans and so forth?
So delivery model, quality measures, transparency - these are bigger, bigger goals of the industry. I didn't mean to be exhaustive, listing everything, but those in a nutshell.
How we then marry, if you will, the work that we have to do for ACA with some of these things that take longer to do, that are much more transformative, to use Jack's word -- and perhaps we can better prioritize these things as a committee.
I'm going to steal the word from several of our presenters yesterday, "roadmap." Maybe there's a better way to create a roadmap that marries all these objectives together.
I'm going to pause right there and hope that we can summarize the conversation we had yesterday. I think it's now the task and the value that we as a committee can bring to the table to help elevate these activities to much more transformative, much more strategic things that are going to add value to our industry.
DR. CARR: Bill?
DR. SCANLON: To sort of follow up on what Ob is saying in terms of reconciling, our charge from the ACA is with this bigger picture. I think there's also the third element, which is our bandwidth or our resources. That actually triggered our initial discussions -- and there has been a lot of evolution in the discussions of the subcommittee -- the issue of bandwidth and the Section 10109 and these five very specific charges that led us to starting to talk about priorities. I think what has happened in the evolution of the discussion is that the issue of priorities is becoming much more global, and this recognition that there are more parts about the ACA with respect to HIPAA besides this Section 10109, which we have dealt with in plan identifiers and operating rules, et cetera. Just to realize the potential of HIPAA as passed in 1996 in today's environment is an overwhelming challenge.
That's putting aside all of the transformation or reform that's going on and it already going on. Private plans are paying providers for some bundles. Private plans are paying for ACOs. Medicare has an ACO survey. Medicare is thinking about bundles. All of these things have information needs that we're not meeting today and that we need to be thinking about meeting in the future. So there is this issue that simultaneously there are huge demands for thinking about how we change the information flows.
To get back to the specifics of Section 10109 and to meet this sort of obligation or respond to the charge from the ACA, we did have a hearing. We have had a lot of discussions. The alternative proposal to the tiger teams that Walter was talking about and trying to set priorities for them was to say we have assessed this issue and we think that, among all the things that need to be done with respect to HIPAA and with respect to health-care reform, these are things that, even where they have merit, can be postponed. That is our judgment at this point in time.
For three of them, there's a question of what the role of standards might be: audits, edits, and payment rules standards. Particularly in a world where everybody is trying to transform payment rules, how do you set meaningful standards that are going to be effective in terms of simplification at this point time? Maybe there will be a future point in time when that's possible, but it's very clear, at least to me, that it would be almost impossible to do it today, to have a standard that says we really accomplished something in terms of simplification, because we also had to leave open all this latitude for plans and providers to come to arrangements that are more effective in terms of producing quality, efficiently delivered care.
I think those are potentially something for the future.
The issue of provider enrollment -- again, it may be a legitimate issue. There may be a pain point in terms of providing information multiple times. But relative to the bigger problem of providing information multiple times by a factor of 2 to 5 or 10, which is what claims information involves, it's not as big of an issue.
Yesterday's hearing reinforced so much about -- we have so many problems with claims information that these need to be sorted out. At yesterday's hearing, we had 39 witnesses. Think about how much we digested of that testimony by this morning. It doesn't happen that fast. So there is this issue that we really need to be thinking about how we build off of what we heard yesterday to try to inform this bigger discussion.
Property and casualty again is an area where there may be some very legitimate concerns. The point about why they are stuck in the 4010 world is a very legitimate one. But they are small relative to the bigger problem. We need to be thinking about focusing on, I think, the bigger problems and, at least for the short term, give our full attention to those.
Justine brought up the issue of attachments. It's going to be, I think, a key to both standardization and simplification, as well as to reform. How do we develop the standards and the information flows that are done in the most efficient way possible, which is probably going to involve some kind of linkage to the EHR, and yet we're going to support reform? If we don't improve the information through reform, we're not going to do the quality assurances, we're not going to do the risk adjustments that are necessary, and these good ideas that we are trying out now for their potential value are going to not work. Then we're going to discard them. And we don't have another arsenal full of good ideas there in the background that we haven't tried yet.
One of the problems we have had in policy is that we sometimes implement things before we're ready, and the entire idea gets discredited. We need to be careful about that in the process.
The two alternatives are to do the tiger team approach for a subset of these charges or to say the Standards Subcommittee needs to step back and focus on the big issue. But it's not just the Standards Subcommittee that needs to focus on the big issue. We think that the Standards Subcommittee needs to keep coming to the full committee to talk about this broader context ad get your input. Quality is probably the prime example of the intersection that we have heard about today. There's a huge quality dimension to all the reform ideas that are being discussed. If that is not adequately addressed, those ideas have a very great risk of failure.
DR. CARR: Let me open it up. Len.
DR. NICHOLS: Well, that was a tour de force. I would just say it this way: Walter, Ob, and Bill, I hear you. But it seems to me that, at a minimum, the claims adjudication, what you call edit, is so important to getting clinician buy-in to the entire reform apparatus that I just hate to see it postponed out of legitimate reform and transition fatigue. I need to see way more cost/benefit on why that thing is -- Bill, I'll just tell you what the IOM has told us, which I believe you probably know better than I do. Hospitals spend 20 cents on a dollar getting paid, physicians spend 30 cents on a dollar getting paid. This is money that we could actually carve out of the system that arguably is not adding to social value. Tell me again why we can't --
DR. SCANLON: On that one, it is not sort of reform fatigue that is the issue, at least in my mind. The question is, what is an edit? In my mind, an edit is, a plan receives information from a provider, looks at it, either can reject the claim or can go back to the provider and ask for additional information. The additional cost that we can eliminate is if we can reduce the requests for additional information. I'm not sure that as a provider I should care what a plan does with my information when they get it. As long as we have some transparency in terms of what payment rules are, then I turn my information over, and if a plan is being consistent with the rules that have been promulgated, then I'm okay with it.
But I don't like the fact that they keep coming back to me and saying, give me more information. This is the attachment issue. This is where we're talking about I can't remember the number, but I think we're in the billions of attachments where a provider is asked, give me more than what you gave me on the claim. We have a standard claim, but now I want to know more.
That, I think, is what the IOM is getting at in terms of the unnecessary administrative costs, because we're making specific requests that --
DR. NICHOLS: That are plan-specific. I think what the IOM was saying is that we need one set of rules across --
DR. SCANLON: Those, I think, are the rules for attachments, not necessarily the rules for edits.
DR. SUAREZ: I think there are different types of edits in the administrative world. There are technical edits. When a claim is received, there's processing that is done to ensure that technically the transaction is correct. There are differences in those and how they get applied. When I send this claim to these people, they reject it, and these people don't. So there is that possibility.
To Bill's point, what is the size of that issue? Is it a $1-billion, is it a $10-billion, or is it a $100-billion issue? That's the question. But that's one level of claim edits.
Then there are other levels of claim edits, more into the adjudication process.
Then there is -- I wouldn't necessarily call it an edit -- more a policy decision of the health plan to request additional information to support a claim. That's not necessarily a claim edit, but it is connected to the fact that the claim was stopped because there is additional information needed.
So we have different levels and conceptually different things about edits. There are potential opportunities for standardization in some areas. Then there is the concern that if we try to standardize too much, as Bill points out, we are now trying to standardize policy or payment, which is something inappropriate, probably, for this.
MS. KLOSS: I heard two additional things yesterday. One was how helpful it would be to this whole dialogue to have the pieces connected, to have some clear understanding of how doing this improves this part, and looking to the committee to work at that level, to lay that out. It seems to me, if we did that, it might give us an opportunity to say where the greatest impact in dollars is. I do think that we have to drive cost out of these processes and that has to be really one of the main jobs here.
The second thing I heard is that we're at a point of real vulnerability in getting to the ICD-10 successful launch and that the committee should give some thought to what we can do to kind of provide a platform or a convening role or something that helps move all the pieces and parts of this together. As so often happens, our industry is siloed in terms of who is doing what piece of that. Of all the complex tasks, this is really where an end-to-end view is needed.
I heard those two things. Understanding -- that may help inform how we prioritize, but a special focus on getting to successful ICD-10.
DR. SCANLON: I would like to apologize if I gave the impression that it was health reform fatigue sort of driving this. Actually what's driving it, at least in my mind, is the idea that we have to have the biggest impact we possibly can on necessary administrative costs.
DR. NICHOLS: Agreed.
DR. SCANLON: The issue of mapping out where they are and trying to attack the problem that's most amenable.
DR. NICHOLS: I thought we had postponed ICD-10. I thought the Secretary said she was considering it --
PARTICIPANT: One year.
DR. CARR: Judy?
DR. WARREN: The ICD-10 has a special spot in my heart. In 2008, this committee held hearings on whether or not we should go to ICD-10. We decided we should. We brought industry in. We had them help us decide what the realistic timeline was for implementing it. They also gave us lots of really rich ideas on how to do that. AHIMA stepped up to the bat, HIMSS stepped up to the bat in educating people, in developing roadmaps, timelines. I can't think of anything we teed up that was better than that strategy. Yet, as soon as meaningful use came in, before there were even any regulations, people quit looking at 5010 and ICD-10, which were already in regs, and started looking at meaningful use and then said, well, we don't have time to get ready for 5010 and ICD-10 -- certainly not ICD-10 -- and then started lobbying to have the date pushed back.
One of the things industry told us in 2008 was that one of the problems with HIPAA was that every time there was a deadline, industry could lobby and the date would be pushed back. So we were to ensure with the Secretary that we would not push back 2013.
Now we're here, with 2013 having been pushed back to 2014. Industry is telling us, you need to set a realistic deadline. You need not to push back the date again.
I'm at a loss as to how to proceed past that.
DR. CARR: I think the thing that was very compelling yesterday was not the vision, it was the execution. I think there are things that you can articulate in policy, but what we heard were very powerful things, like the delays with 5010. They have caused at least some practices to go belly-up. The cost of 5010 was estimated at $16,000 for practice, in a one-person practice, with the cost of the implementation and the delay of the implementation.
I think those are the things that get lost in the detail.
I was impressed today with the speed of uptake of EHR, to the point that those same practices -- one in five now has an EHR. But what's the differentiator? The regional extension centers. That took this lofty idea that actually also had financial alignment and then out went out and showed, here's where you plug it in, here's the on button, here's what you do. That's what we are talking about in the local providers.
What I came away with yesterday is that this repeated request for a roadmap was, in many ways, an alignment of incentives. As we sit here and say how many workers comp cases we have versus how many whatever else we have, if we can begin to see that it's this many events and this many dollars and this many resources, we can, first of all, understand the 80/20 rule of where an impact could make a difference, but also get alignment of the embrace. Right now, today, as we have heard over and over -- in fact, at our last face-to-face meeting -- for the practitioner in an office that does an encounter and sees a patient for a sore throat and writes down sore throat and this is what I did -- they have not been instructed to now add the fact that this person also has hypertension, diabetes, and all that, because that's not what you are treating. In practice, it is an encounter with one diagnosis.
Trying to help them understand why it's important to have a more granular diagnosis -- left tonsil, right tonsil, whatever it is -- it doesn't tie out with what they are doing every day.
That's not to say that in the totality it makes a difference. We talked about where the risk adjustment happens. There are two things. One is to point out risk adjustment, population health, and how this all ties in with the new health-care reform. But we're still left with a 15-minute visit for a solo practitioner who has just spent $16,000 on 5010 and has another $16,000 on the EHR, and now has to shrink that visit down to get all the other diagnoses.
Obviously, I'm being extreme in this, but I think the point is that we have not reconciled the perspectives. As we heard yesterday, the implementation, with all the things that we had heard but we thought wouldn't be an issue -- and it turned out they were an issue -- or the voices we didn't hear about what the obstacles are -- I think that the regional extension centers' construct is the local reality to the vision. I think that's something for us to think about.
DR. GREEN: I am really appreciative of this report from yesterday. I think I have an advantage in having not been there yesterday. Listening to this conversation reminds me of two or three things.
One of them is, we are more than a decade past the IOM's start of the Chasm series. The initial book's fundamental conclusion was what? The US health-care delivery system as it is designed is so screwed up, it cannot possibly be fixed.
It's my personal opinion that we will now spend a decade trying to fix it and that this conversation has confirmed that they got it right.
A second thing -- you guys are going to hate me for this; I'm going to hate myself for this -- it reminds me of Robert Frost and a poem he wrote called "Directive" that some of you may know. It opens up with the phrase "Back out of all this now too much for us. Back in a time made simple by the loss of ... there is a house that is no more a house ... that you can find by taking a road that is no more a road ... if your intent is only to get lost."
That's where we are.
DR. CARR: Is this a recommendation? If you're going to raise an issue, I'm expecting that you have an alternative health system in mind.
DR. GREEN: The old one is burning down.
DR. CARR: We get that.
DR. GREEN: The comments about the visit -- the visit is now no longer the prudent, useful unit of analysis. We know this.
T.R. Reid's book, when he offered his shoulder to 14 countries and he tracked down how those systems worked when he did it in Canada and he got to reputably the largest hospital in Canada and he asked to go see their claims processing operation and their billing operation, where did they take him? To a room. What was in the room? One desk. How many people worked in it? One human being. You know what that means? They don't do claims adjudication.
The requirements of the ACA make no sense to a Canadian. The edits and all this stuff that are part of our life don't even exist -- Bill's comments about the ACOs, the restructuring.
I'll hush with this. There's change that's normal and there's change that's abnormal. Laws are written for normal change. That's not where we are. We're in abnormal change. My recommendation is that the committee follow Linda's advice and Ob's advice: Look for where the opportunities are for convergence.
I thought Bill had a very good -- look at some of these things that have been prioritized first to do and say those can be deferred, and avoid going down those roads. We should actually plan for the future rather than the past.
DR. CARR: I think it is going to be hard to top those comments.
We have gone a little bit beyond our time. This is why we need a retreat.
I'll ask you to take these thoughts away -- and those who were here yesterday -- as you go back to the subcommittee groups and think about how this might impact.
But I think this isn't going to be solved in a meeting summary tomorrow.
We're trying to put some dates together for the Executive Subcommittee. Marjorie, are we thinking of a one-day --
MS. GREENBERG: Probably. Certainly a full day, in person.
DR. CARR: What we need to do is get a checklist out to each of the members to see who is available, a Doodle. If you have a computer and you can do it tonight, let's just do it so we can leave the meeting tomorrow with a date and a plan.
Part of the work today is to think about, what are the kinds of questions, given the discussion we had just now -- what's the focus? The things that I heard today were just the roadmap of how things tie together and opportunities for convergence. I think those were two important themes.
MS. GREENBERG: Can I just add one thing, which goes with that? It was very rich yesterday. Along those lines, there was a recommendation for some type of summit to bring together the different stakeholders and try to do these things, to at least do an outline of what a roadmap would be like and identify opportunities for convergence and look at different opportunities to make some sense out of this broken system.
I know the CMS folks were very taken by that. They saw that as something that maybe they would benefit from.
I don't exactly remember -- I think it was around EHRs, which were then called computer-based patient records or something -- the committee has partnered with the Department in the past on a summit type of meeting. I think that is something that we might just think about.
But I would have to agree that there are a lot of things that have to get done. If the committee could help move this along, this, I think, would be a major contribution. People have been talking about needing some way to bring these things together for a very long time, and particularly those issues of convergence between the clinical and the administrative. I will certainly devote my time over the next year to help you with this, if I can.
DR. CARR: I think, just to elaborate, what that summit idea came out of was the idea that -- one of the payers said, I understand my world completely. I don't understand the provider world, and the provider said, I don't understand -- no, we didn't have a provider, but the representatives of the providers said the same is true.
We can have these conversations, but until we understand the problem we're trying to solve --
DR. WARREN: We did this when -- we were going to have a Standards Subcommittee hearing when Jeff and I co-chaired it, and at the time meaningful use came out, and we took our meeting time and we really devoted it to starting off the meaningful use kickoff. There were hundreds of people at that meeting. It was huge. I think it really set the tone. So we might want to think about something like that again and bring in ONC and CMS and HHS and all the people that have all these deadlines and all these requirements and all of the regs and all of that, and really help each other learn about what it's doing to impact others that may not know about.
DR. CARR: With that, we will adjourn.
(Logistical announcements)
Thank you, everybody, for yet another wonderful deliberative day.
(Whereupon, at 3:30 p.m., the meeting was adjourned.)