[This Transcript is Unedited]
Department of Health and Human Services
National committee on Vital and Health Statistics (NCVHS)
Population Health Subcommittee
November 28, 2017
TABLE OF CONTENTS
- Welcome, Roll Call, Agenda Review
- Bob Phillips, Bruce Cohen
- Review of September Vital Statistics Hearing Summary Report
- Bruce Coh
- Review and comment on draft Use and Costs report authored by Dr. Parrish
- Bruce Cohen, Gib Parrish
- Scoping future Vitals Statistics System work
- Subcommittee Discussion
- Commission on Evidence-based Policymaking (CEP) Report and data ecosystem project planning
- Bob Phillips
- HHS data access issues
- Bob Phillips, Vickie Mays
- Draft 2018 Work Plan – by quarters including NCVHS Measurement Framework
- Full Subcommittee
- Public Comment
- Rebecca Hines
P R O C E E D I N G S (9:00 a.m.)
Agenda Item: Welcome, Roll Call, Agenda Review
COHEN: Welcome all. This is Bruce Cohen. I co-chair the Population Health Subcommittee of the National Committee on Vital and Health Statistics. This morning, early afternoon, we will be having our virtual public meeting to discuss population health.
Before I review the agenda, I would like to introduce my co-chair, Bob Phillips, and the National Committee members need to do our due diligence, and I will start that out.
My name is Bruce Cohen. I am from Massachusetts. I am a member of the Full Committee and co-chair of the Population Health Committee. I have no conflicts.
PHILLIPS: Bob Phillips. I am with the American Board of Family Medicine. I am a member of the Full Committee, as Bruce said, a co-chair of the Population Health Subcommittee. I do want to mention one potential conflict, in that I am contracting with Care’s at the University of Missouri to develop a geospatial health platform for our diplomates. They have been a collaborator and contributor to discussions around population health and they come up in the data access discussion today.
That is only conflict I have right now.
COHEN: Could all the committee members introduce themselves, please.
STEAD: Bill Stead, Vanderbilt University, chair of the Full Committee.
LOVE: Denise Love, National Association of Health Data Organizations. Member of the Subcommittee.
MAYS: Vickie Mays, University of California, Los Angeles. Member of the Subcommittee. No conflicts.
RIPPEN: Helga Rippen. Member of the Full Committee, Pop Subcommittee, also Privacy and Security Subcommittee and no conflicts. I am from Alertgy.
GOSS: Alix Goss. I am with Imprado, a consultancy of Dynavet Solutions. I am a member of the Full Committee, co-chair of the Standards Subcommittee and I have no conflicts.
COUSSOULE: This is Nick Coussoule. BlueCross BlueShield of Tennessee. Member of the Full Committee, co-chair of the Standard Subcommittee, member of the Privacy, Confidentiality and Security Subcommittee. I have no conflicts.
LANDEN: Rich Landen. Member of the Full Committee, Standards Subcommittee, no conflicts.
STRICKLAND: Debra Strickland. Member of the Full Committee and the Standards Subcommittee, and I have no conflicts.
CORNELIUS: Lee Cornelius. University of Georgia. Member of the Full Committee, Population Health Subcommittee, no conflicts.
MONSON: Good morning. Jacki Monson, Sutter Health. Member of the Full Committee, member of the Subcommittee Privacy, Confidentiality and Security, and no conflicts.
COHEN: Thanks, Jacki. So let us get going. First of all, I really want to thank Rebecca, Kate, and Geneva, who have been helping the Population Health Subcommittee organize itself and plan this day, and really work on our activities. Thank you, Rebecca, Kate and Geneva, for all of your work.
I will briefly go through our agenda. The first half of our agenda focuses on vital statistics and vital registration issues. The first hour we will be reviewing the hearing summary report. Then we will turn the program over to Dr. Gib Parrish. Gib, are you on the line?
PARRISH: I am here, finally.
COHEN: Gib was contracted to do some work that arose from the Committee hearing. After Gib shares his work, we will spend about a half an hour discussing the scope of the future of vital statistics’ work that we will be doing over the next year or so. I really want to thank Dave Ross, who can’t be on the call, and Helga Rippen, who made outstanding contributions to help us begin to focus on where we need to be going.
After the break, I will turn the facilitation over to my co-chair, Bob Phillips, who will talk about other activities the Population Health Subcommittee is planning. First of which, is working HHS, as we move forward, to see what role the National Committee can play in helping support merging Commission on Evidence-based Policy project.
Then Bob and Vickie will discuss another project that we hope to get involved with around access to HHS data.
Then finally, we will go through some planning on a quarter by quarter basis for the next year. We will end up the session with some feedback from the public.
Does anyone have any comments or questions?
COHEN: Okay, now the fun begins. Is it possible for our slides for the first block, the vital hearing summary, to be posted?
HINES: I am going to email the slides to everybody. I apologize to the public that they are not available for viewing. We are having technical problems with the contractor who is running the WebEx. So I will send them all right now.
Agenda Item: Review of September Vital Statistic Hearing Summary Report
COHEN: What I will do is I will talk for a little while and I will stop and ask for feedback on a sort of slide by slide basis, because there is really lots to talk about.
The first part of our discussion will be about the hearing report. A draft of which will be coming shortly, for internal review.
HINES: Bruce, everybody has that report. It is in the book.
COHEN: Great. Committee members and staff, have that report. I will briefly go through it and feel free if you have got any questions or comments as I lead the discussion, I would really like us to be interactive. We are hoping to get feedback so that we can really hone in on and shape up this report.
I will give a brief overview, talk a little bit about the report structure, and then talk about the high-level findings that are highlighted in the report. Then I will end up this morning’s discussion about the report with some questions that we would like to resolve as we move forward.
The high-level findings really focus on four areas, and are from what we heard during this incredible hearing. The first set of findings relate to the current status of vital registration. The second set of findings and observations relates to the challenges that were identified. The third set of high-level findings relate to the approaches that we heard to address the challenges that the expert panelist provided.
Then the fourth area that will be included in this report, is the summary of some the incredible generative and focused discussions about the vision for vital registration in this country and suggestions about how we can move forward.
Any thoughts? I will pause there.
HINES: Bruce, everybody has got the slides, or should, and I just sent them as well. I don’t know if you actually want to walk through them from the beginning or however you want to do that.
COHEN: That was essentially the second slide. I am moving on to the next slide called Hearing and Vision. I will just let you know when I am in my mind, moving on through the slides.
The Vision: a sustainable, secure and robust U.S. vital registration infrastructure that meets the needs for timely and accurate information. Kate has been very good to point out, when we talk about vitals we really – and this is highlighted in an upcoming slide, vital registration really has two major components – vital statistics, which is the outcome of the data that many of us in public health use, and vital records, which is the heart of the system that individuals rely on as foundational documents of birth certificate and death certificate, for our purposes of identity and administrative transactions.
These dual roles play into the development of data collection. As we saw, there are many uses that focus on each of these pathways.
The guiding question that the hearing focused on was how do we transform today’s vulnerable and perhaps fragile, system into a network of state data systems that produce accurate and timely information supporting this breadth of uses and needs that I briefly outline.
Again, I use the word state because the data we are collecting are at the state level, but state really means jurisdiction. There are 57 vital statistics jurisdictions. Fifty of them are states, two of them are cities, and the five additional are territories. So I will use the words state and jurisdiction interchangeably for the purposes of today’s discussion.
Finally, the objectives of the hearing were to use a multi-stakeholder presentation and discussion approach to identify the essential elements of the vital registration, to assess its current status, and consider what actions are needed to protect and improve the system.
I think pretty much the strengths of the meeting that will be highlighted in the report were, the incredible breadth and understanding of different parts of vital registration from the wide array of panelists who were involved. Also, the interactive nature of this hearing. Not only did we hear substantial and important objective testimony, but we had the opportunity to listen and discuss with the experts their opinions about some of the current issues and how to address them. That flavor will be highlighted in the report as well.
I will stop for a second and see if anyone has any comments.
COHEN: Hearing none, I will move on. The report will highlight the hearing participants to give an understanding of the breadth. There were over 40 expert panelists. The feds included – if you see the slide, this is your acronym test this morning. There are a bunch of organizations mentioned; HHS, CMS, NIH, HRSA, parts of CDC, the Office of Public Health and Scientific Services, which is the parent organization for NCHS, and the National Chronic Disease Prevention and Health Promotion Center. Other federal representatives were involved with very different needs and uses. Department of Commerce, Census, Social Security Administration and Homeland Security.
The breadth and use again, of vitals among federal agencies was a key issue.
We had enormous representation from State and local registrars, and country registrars. I want to thank my colleagues at NAPHSIS, the National Association for Public Health Statistics and Information Systems, for helping us identify many colleagues who actively contributed in the two-day hearing.
A key contributor also, were the medical examiners and coroners. There were folks from the National Association of Medical Examiners and the International Association of Coroners and Medical Examiners National Funeral Directors Association, really laid out some of their issues and highlighted the need to really coordinate their data collection efforts with ongoing mortality surveillance.
We also heard from the American Immunization Registry Association and the Association of Maternal and Child Health Programs and the Council for State and Territorial Epidemiologist.
I think a real key contributor were the commercial sector. Verus Financial was there, Pension Benefits, and other contributors like Kaiser and foundations, including Robert Wood Johnson.
We rounded up more than the usual suspects. We had just an incredible contribution from a variety of different perspectives.
The major question that I would like to pose and get any feedback on, as we have had a chance to consider, were the folks whom we missed, as we move forward, who we should try and get more feedback from? The one clearly, I can think of is individual consumers who actually use these certificates to get their perspective on how systems work in their various jurisdiction.
I will stop here and open it up for other suggestions or comments.
RIPPEN: This is Helga. I think another component should be security. Experts in security and privacy. Security, just given kind of the nature of the vulnerability of our systems. Because if the intent is to think about how do we crate a national system, I think that is going to be one of the core things that we have to address. So we should be proactive about it.
PHILLIPS: This is Bob. I haven’t been at an international meeting. I am wondering if there are other international examples of how vital statistics data are collected and used that some of our international colleagues can teach us about.
COHEN: Thank you. Again, I neglected to mention that we had one of the leads from Stats Canada give us her perspective, but getting other international perspectives is a great idea, too.
I will move onto the next slide, which is a draft structure of the summary. It will be essentially the introduction, a review of the key concepts and components, and the presentation of the stakeholder perspectives, that essentially will roll through some of the panel information. We will get to how the panels were divided in the next slide. Then we will talk about data uses.
Many of us were incredibly interested and well-educated to the complexity not only of data collection, but the multi-faceted uses of vitals. I think if there were several key issues that emerged, it is really understanding the use of vitals and how the system, or the 57 different systems at the jurisdictional level and the federal system, are funded to keep these systems rolling. To keep them secure, to keep them accurate, to keep them timely, to keep them maintained, and to keep them functioning for all the functions that we want.
NCC REPRESENTIVE: (Announcement)
HINES: Thank you. Can you please bring up the slides that we shared with you yesterday, or actually last week? Section B, just bring those up whenever you are able, and the speaker will tell you when to forward them.
COHEN: As I was saying, an immediate output of the meeting was a general desire to gather more information about the uses and the funding in for vitals. We were very fortunate to have Gib Parrish in attendance. We have engaged him in doing some more work on helping us better elucidate the uses and the financing of a system. In the next block, Gib will review some of his initial findings.
Again, I thought part of the strength of the meeting was our ability to have interactive discussions about the challenges that vitals currently faces, and may face in the future, and really review some of the cross-cutting themes. Those will all be described in the report.
I am just going to keep moving forward to the next side until they appear on the screen.
Day 1, we heard from the jurisdictional and Federal perspective around data collection. How the system currently works and what some of the issues are. Than we began enumerating the breadth of the data uses.
Day 2, we had fabulous generative discussions regarding these issues and we ended up brainstorming about options, both for short-term and longer-term actions. Hopefully as we get to the discussion later this morning around scoping, we will be able to discuss where the committee would like to go in the area of vital registration.
If I had a lesson learned, it would be for us as a national committee, not only to hear testimony from experts, but also have the opportunity to listen to experts discuss among themselves and share with us, their ideas about opportunities to address issues in the areas that they know so well.
I will stop there. Any comments or additional thoughts?
RIPPEN: This is Helga. We may want to reconsider calling out the uses as a separate thing because if you look at the outline, it is already covered under users. We have the stakeholder perspective and concerns. So we have the data producers and that is where all of their challenges are or their approaches are. Data users, by definition, is they are using data.
I would actually recommend instead of calling out as a separate thing, that it is kind of part of the group. Just something to consider because otherwise it is a little redundant.
COHEN: So essentially, embed the data uses is in the discussion of the users.
RIPPEN: Yes, because that is the ones that are using the data. That is why.
COHEN: Thank you. I will move onto the next slide. Again, remember this all about what the report is going to look like. The first – not the first, the substantive discussion in the report will highlight what we came to find – next slide, please.
HINES: Please forward to around slide 7 and we will let you know where we are.
COHEN: The slide titled Findings: Current Status of Vitals Registration. Thank you.
As I mentioned before, vital registration and vital registration offices at the state and local level have the dual function of generating vital records for the plethora of important individual administrative uses, as well as creating the foundational public health statistics.
We also learned that the jurisdictions have a very different set of rules and regulations for data collection, data dissemination and sharing, which turns out to be part of the complicating issue for developing a sustainable and robust system.
NCHS contracts with all jurisdictions through the cooperative health statistics system, to receive vitals information and release data. Dr. Atkinson and Rockwell said, from these jurisdictions but clearly don’t provide enough resources to full cover the cost for developing these systems and maintaining them and moving forward.
Other entities, like Social Security Administration, National Technical Information Service, receive these data either directly from jurisdictions or from NCHS, in a convoluted – that is my word – enter a set of agreements that govern the use of the data. Because jurisdictional statues and regulations vary the data from some states can be used by some users and not by others.
Any comments or questions?
COHEN: Again, the key here is understanding the foundational documents that vitals really are and the need for timeliness, accuracy, and security, as Helga mentioned, really can’t be minimized. The system right now, is very complicated.
I won’t go through this in detail but this is essentially a high-level listing of what some of the challenges are that were identified by our expert panelist. Cost and financing, technology and interoperability. Data availability and access. We heard from a variety of users; from researchers, from administrators and commercial entities, and from healthcare providers, how difficult it is to get the data that they always need.
One striking example for me, focused on one simple task, that is how difficult to rapidly confirm the fact of death for an individual. Whether that is to pay benefits or whether to follow-up on a research study or to include them in treatment issues. Just the complexity of the interlocking jurisdictional systems make it difficult to develop a ubiquitously, timely system to be able to do this one simple task.
The final bullet here I think is something that Tara Das, who was a keynote speaker and a registrar from Texas, highlighted. The troops on the ground at the local registration offices of the state registry, have enormous responsibility and workload to collect these data and provide information to the public and a variety of users. Sometimes it is difficult for them to see the benefits and importance of the tireless efforts that they undergo.
I think similarly, there is enormous responsibility on data collectors at the hospital, at funeral homes, that all get into this system and these folks who are really committed to doing the best possible job sometimes aren’t really aware of the importance of the information that they contribute that gets compiled into vital records and vital statistics. That was an important learning for me in the recognition that I think we need to make sure folks comes through in this report.
Any comments on this list of challenges?
PHILLIPS: Bruce, this is Bob. I really want to echo the last point, the value of return to the data collectors is really held out as creating the intrinsic motivation for them to do this and to do it well, and I just don’t see a lot of return of values. That may be one of the more difficult things for us to contemplate without more feedback from them.
COHEN: That is another identified, who else do we need to talk with. Probably understand how we can support local data collections better or how we can help others to do that activity. Thanks, Bob.
Next slide, please.
There were a lot of approaches and suggestions mentioned. The first is understanding the cost and who pays more explicitly, and return on investment.
Gib began those investigations, and he will talk in the next block, block C, a little more about the progress that he is trying to make. But certainly, many folks mentioned the business model underline of the support and resources available in the federated system. I haven’t used that term yet, but clearly the responsibility for actually collecting this information lies at the state, but we are concerned about producing a robust national system. This is a true example of federalism at work, in both the benefits and challenges of this federalist approach, are certainly dramatically highlighted in how we do vital statistics in this country.
RIPPEN: I think we have to be careful about some of the nuances of what that might mean and the implications. With regards to core functions that have always been at the state or local levels, the laws that are in place for that and kind of the responsibility for the traditional vital statistics. Then the use of deidentified information for other purposes and then for the question of what are implications of a system that would allow a more “federal” or I would say, U.S. territory’s approach.
I think there are nuances with regards to, how we may want to think about it, the terms that we use and the implications. There are some nuances and I think we just have to think through some of them.
COHEN: Other comments? That is a good segue into the next key bullet, the technology, interoperability, and data exchange. Again, the complexity, the flow of information, was highlighted by many of the panelist, and really understanding and making sure this is efficient, effective, timely and secure, is a challenge and perhaps as we move forward, we might want to delve more into some of these issues.
Next slide, please.
So these discussions and understanding —
STEAD: Bruce, this is Bill. Let me just inject one piece since I’m still just pondering over the last couple of slides.
One thing that came out in the workshop, but probably comes out more clearly in Gibs report, are the redundancy and overlap. The combination of redundancy, overlap, and incompleteness of the various approaches to making the data accessible. I am not sure we capture that in the challenges slide. That is a little different than the quality of the original data. It is really the redundancy, overlap, and incompleteness of the ways access is currently supported. I don’t know if that would be worth capturing.
COHEN: Okay, I think that is a good point. We will consider that for inclusion as a challenge. I think you are right. People did talk about the redundancy issue about who gets what when and if there is a way to make that flow more efficient. Thanks, Bill.
This slide sort of highlights some of the visioning and suggestions that we might want to consider in our scoping activities moving forward to investigate. Some are broad and some are specific. Gib will talk about uses and users. I think he will address some of the issues that Bill brought up about redundancy.
Again, it is clear that we need all the stakeholders involved as we move forward, considering changes. One way to do this is by creating networks I communities of practice.
One specific suggestion that would help federal records offices move forward in a more standardized consistent way across all jurisdictions, is the development of accreditation as part of the PHAP, the Public Health Accreditation Process. Delton talked a bit about some of the activities moving forward.
I know NAPHSIS is also involved in efforts to develop criteria for accreditation of vital records offices. This also relates to having safe in these fundamental documents that are used for identities. how secure and good is the birth certificate presented from one jurisdiction compared to another?
Part of the redundancy issue that Bill just mentioned is can we do a better job of embedding the data collection into existing workflows?
Again, another idea is separating out the legal and administrative needs and uses of the data as one data stream from the public health surveillance and vital statistics end is another data stream, in order to make the system more efficient.
It was also mentioned that the birth certificate in particular, has expanded overtime and is there a core set of information that can be ubiquitously available more rapidly than the full information from the birth certificate or the death certificate, that will aid us in moving forward with some of the key uses.
Any questions or comments here?
COHEN: Next slide. Again, these are examples of other activities that we might want to consider as part of the NCVHS work.
The Model Law, both NCVHS and NAPHSIS and jurisdictions, worked to develop a Model Law that would standardize the collection across the complexity of jurisdictions. Promoting this might be a way to address some of the issues about the differential availability and access to data.
Certainly, I think it was clear that this complex interactive federated system, which is a foundation of converse and public health in many ways, is not really appreciated by the public and policy makers to the extent that we feel it should be. Should NCVHS have a role of promoting the value and visibility and understanding of vital.
Of course, one of the charges for the National Committee is to provide actionable recommendations for the secretary to help move the Department of Health and Human Services forward.
I think this issue came up and it was mentioned briefly in our discussion, vital touches a variety of other activities that are part of our ongoing work. Whether it is Standards or Quality or Privacy and Security, we need to make sure as we move forward with our work on vitals, that we align it with the work of the other activities for the committee.
Any comments here?
LOVE: This is Denise. I am not sure it would change any of the comments, but as I look at the second bullet and making the value proposition to leaders and funders, et cetera, it seems that sometimes we might be pitting one data system against another.
I am wondering if there is a way to say the vitals are an essential component of a holistic data system, and try to weave that in that they are one part of a state’s information system and a federal information system. But I don’t know how to say that, and I don’t know what I am really advocating for. It is just that it is one critical data system among others, that are also competing for the same funding – not same funding, but funding as well.
COHEN: I think it might have been you, Bill, who promoted the visual of the health record or the personal record across time, starts with the birth certificate and ends with the death certificate. But there are many other records and information that get included along the way. The vision of the distant future having an integrated personal health record, that includes all these data sources that Denise is talking about, that starts with the prenatal care records, and would be a beautiful thing.
I just wanted to open this up. I covered many of these topics and I have heard some suggestions for some, but basically as we move forward with this report and our activities, the goal is to keep, I think, this report short and actionable. Yet, describes the incredible breadth and depth of the information that we heard at this hearing.
Here are just some of the questions and issues, that I think putting together this report will need to address.
I am just putting them out there and letting folks look at them. If they have any suggestions about how we should incorporate information into the report, now is a good time or if you want to think about it a little more and get back to us as soon as possible, as we move forward with internal drafts of this report. Then sharing the report with all the participants before bringing it to the Executive Committee, and finally the Full Committee, for review and release.
RIPPEN: This is Helga. With regards to the report, I think that the report should reflect the balance of what was said, and agnostic to who said it, to some degree, because it really should reflect the wisdom and insights from the panel members and also some of the nuances that when we ask questions, to explore different themes.
I think as long as we are honest, and representing what we heard, I think that is good. I think we can then combine it with the other report to then highlight certain things that we think are things to focus on. So that would be my recommendation.
HINES: Bruce, this is Rebecca. I heard you use the word actionable. I am not sure the report per se, will be actionable. It is more like it is the foundation. Obviously, Gib’s report, which we will be talking about in a moment, will give us more fodder. I would see it as material, rather than what we heard as actionable directly.
COHEN: Good feedback. In our early discussions I think we agreed, it is premature to have detailed recommendations. But I think we should – how should we include the general themes that were uncovered or discussed. Is that appropriate to sort of end the report with?
HINES: If there is agreement among members that we could do that. We just need to do it as Helga said, in a balanced way so that we are not over-emphasizing our favorite viewpoints. But more, this is what people brought and when we get to the work plan discussion later this morning, then we can get into how do we take all of this. How do we take the report? How do we take Gib’s analysis and move forward?
The task is being as objective as possible. We will let Susan tackle that for us in the next draft.
COHEN: I was remiss for not acknowledging Susan Kanaan, who has begun drafting the summary of this incredibly rich and complex two-day interactive hearing. Her work has been fantastic I the past, and I am looking forward to those continued wonderful reports that somehow she weaves these tales from all of the disparate information that we receive.
Any final comments before I turn it over to Gib?
LANDEN: This is Rich Landen. I want to make a couple of observations. First, there is truly a wealth of good information, practical information, that came out of the hearing. To the extent that space permits, incorporating that in the final report, I think is a priority. A lot of our audience is going to need the background that is contained in here.
Second, some of the content talks about integration with EHR’s, and just hints at the ability to harness interoperability. I would like to at least put on the table for the group to think about is whether or not to put some hooks into their report, not going too far, but just to call to our attention that we are looking for future systems, so we have to consider things that are developing elsewhere.
Specifically, I have in mind the interoperability of the EHRs. The EHRs and EHRs systems were mentioned, so the thought about is there an app that eventually will be the harness of real-time interconnection to the EHR to automatically populate a lot of this data throughout the system.
On the other side of the coin, help disperse the information or report out, use the information, that is captured by the system. So just kind of setting the stage to look ahead and just fixing yesterday’s problems.
COHEN: I do, before closing, just want to thank all of my colleagues from the National Committee, who showed up for these two days, and for what became a very long week of meetings. Your input and perspectives really added so much to the hearings. I really appreciate your willingness to come to D.C. early and stay through this hearing. That really made it the success it was.
HINES: Can I ask the host if you can bring up file C, please.
STEAD: While they are doing that, nice work team.
HINES: I think we can turn it over to Gib, yes, or do you want to give some background on what Gib was charged with?
COHEN: Gib, you can do that.
Agenda Item: Review and Comment on draft Data Use and Costs Report Authorized by Dr. Parrish
PARRISH: Alright. Can everyone hear me? Thank you, Bruce, thank you, Rebecca. This is Gib Parrish. As Bruce said during his remarks following the hearing in September I was asked to prepare sort of a follow-up report that would look in some more detail at the uses, user systems and some sources of revenue for vital records and vital statistics systems.
I was also asked to look at the cost for running these systems but the reason you don’t see that on this slide is that that was a very difficult nut to crack and I’ll make some remarks about that toward the end of my presentation but that is not a principle focus of either my report or my presentation today.
Basically, the approach that I took was to review some of the materials presented at the hearing including the transcript. The transcript it turns out turned out to be actually quite helpful for getting details about many things as well as the number of the slide and written testimony that were presented. I looked at a number of websites for different systems, both state level, vital records offices, the NAPHSIS website and other sites to gather information on people who use vital records and health statistics, actually vital statistics.
And then finally I conducted about eight to 10 interviews of folks related to uses, users and sources of revenue. And I want to, before proceeding, in particular, thank Rich McCoy and Steve Schwartz who are vital registrars in Vermont and New York City respectively. I want to thank Shawna Webster, Andrea Price and Anthony Stout of NAPHSIS and I want to thank Delton Atkinson and Kate Brett and Rebecca Hines of NCHS for their help in the work and finally thank Bruce Cohen for his guidance and assistance as well.
Let’s go on to the next slide please. I’m sorry that this slide may be a bit hard to read and if you can try to make it as large as possible on your screen that would be great. But I thought it would be helpful first to look at a big picture related to birth and death registration. So the first two slides, which are also present in the eBook for the Population Health Subcommittee that was mailed out, these slides are present in that eBook on pages 17 and 18.
But I wanted to walk through this. And this actually gives I think a very good picture of what I found in the course of my work. And I’m going to go through the Birth Registration System initially, stop and see if there are any questions or comments about this and then I will talk about the Death Registration System.
First of all, on the left-hand side of this slide is the actual generation and collection of the data for the birth certificate itself. And in the case of birth, most births in the United States occur in some sort of health care facility principally in hospitals so that’s really where the focus of the data collection is. Typically, in a hospital there is a clerk or other person who is responsible for really making sure that all of the information is collected that’s needed for the birth certificate and that person typically interacts with the Electronic Birth Registration System which is present and essentially all in states. It’s an electronic system in which data for the birth certificate can be entered.
The key challenges for the birth certificate are the facts that data needs to come from several different folks, from the mother, typically from hospital records of various sorts, both the obstetric and pediatric data. And there also needs to be information from the perinatal visits that may have occurred. Some of this information may be accessible from electronic health record which the birth clerk may use but that is certainly something that’s more in its infancy and I’m recalling one of the last comments to Bruce’s talk that talked about the potential use of EHRs in this process.
Once the information is collected and entered into the Electronic Birth Registration System, then it is further processed there by the state health department and made available to various users. The middle section of this slide essentially represents a given state, and as Bruce mentioned this could also be a local or a territorial jurisdiction but I’m just focusing on its state for the purposes of this overview.
The state health department, and this may vary state to state, may provide information (phone issue) neonatal screening programs to immunization registries within the state because there are immunizations that take place essentially at the time of birth, the hepatitis B vaccinations, in particular. So that starts very early on.
Data is provided to the National Center for Health Statistics which is on the right-hand side or these are national players on the right-hand side. There are other state agencies that utilize birth records, an example being the Department of Motor Vehicles and Voter Registration. The DMV in some states is a place in which people can in fact register to vote and so they may utilize birth records to verify certain things about people seeking to register to vote.
Because some births may occur in a given jurisdiction but that is not necessarily the jurisdiction in which the mother and baby are residents, there is often a need for exchange of records between different jurisdictions. At the present time, a system developed by (phone issue) provides for –
STEAD: You are cutting in and out.
PARRISH: Oh. The interjurisdictional exchange allows exchange of records between two or more states. It’s also utilized some for exchange of records between the state health departments and the National Center for Health Statistics.
Vital records offices also provide data to NAPHSIS which compiles birth files from all states except New York and Texas which are available for use through a system known as EVVE and for those who wish to use the EVVE system, payment is made back to the state health department by NAPHSIS. The National Center for Health Statistics, as Bruce mentioned, has the Vital Statistics Cooperative Program, which provides funding back to state health departments for use (cuts out) has a program of Enumeration at Birth, EAB, in which they obtain records electronically from vital records offices that allows the assignment of social security numbers to newborns very soon after birth. So the green lines on this slide show funds – sources of funding that go back to state health departments and possibly to the vital records offices from various groups for the use of vital records.
Let me just say the reason that the solid arrows go to the state health department but there’s only a dash line to the vital records offices is that depending on the state, the actual monies that come both from the sale of vital records at the state level as well as monies that come from the use of vital records that may simply go to either the state government general fund or to the state health department and may not necessarily go back directly to the vital records office. This is something that varies state to state and would be an important piece of information to try to obtain more systematic information on for the whole country.
Let me just stop for a second. This is essentially an overview of the Birth Registration System. Let me see if there are any questions about this or comments at this point.
STEAD: Gib, this is Bill. The thing that is a little unclear to me is in some cases the solid arrows emerge from, if you will, system level boxes and in other cases they come from, for example, from the vital records office box that surrounds some of the systems boxes.
STEAD: Can you help me understand that? You are saying that the office somehow makes it available in a way that’s other than the systems in the little boxes inside the vital records office.
PARRISH: Yes, that is exactly right. For example, the EBRS system, Electronic Birth Registration System, my understanding of it is that essentially it feeds data directly to SSA. But that records that go to NAPHSIS and NCHS are compiled and sent, not necessarily in real time, to those two groups. And there may be additional compilation of records, et cetera, and that’s why I put those arrows in, just leading from the vital records office box itself rather than from the system, the EBRS system itself.
STEAD: Got it. That’s really helpful. I can then translate that to the others. I just was trying to track it. Thank you.
PARRISH: You’re very welcome and again, that’s why on the green arrows in terms of compensation that’s going back to states for the use of vital records, I’ve put it on the outside of the state health department box so it may go into some general fund in some states whereas in other states it’s represented by the dash line and it may actually get back to the vital records office directly. Again, this varies state to state. Any other questions?
MAYS: This is Vickie. One of the things is the difference between the birth certificate and then the birth record. And on the record, I forgot, I think Delton told us once, there’s some enormous number of pieces of information that are collected. What would be helpful to know is what data goes where because not all data is sent and so getting a better sense of what information is sharable and what information isn’t and with which groups would be useful as well.
PARRISH: Thank you, Vickie. I had actually begun, for my report, a table that tried to show that, but had not completed it. I will now endeavor to do so. Just as by way of an example, the EBRS data that goes to SSA – essentially SSA is just getting about four or five pieces of information from the birth certificate, which is what they need essentially just for – name, date of birth, place of birth, mother’s name also goes, but it’s a very limited subset of what’s in the electronic birth record.
Whereas NCHS gets a much more complete set of data from the electronic birth record that includes not only sort of demographic and identifying information but of course, medical-related information concerning the birth itself as well as prenatal care. But that’s a good point and I will add that. Go ahead.
MAYS: I think that this is what will help us also, in terms of efficiency of understanding what needs to go where and who needs what because I think the cost of some of this – it’s almost like what Bruce said earlier, or Bill I guess it was, about how we have these duplicates. I think one of the things we might be able to do, which we should focus on is to figure out is there a more efficient way for the transmittal that can occur instead of each of the requests and a cost associated with that request.
PARRISH: Very good point.
COHEN: Vickie, I think that is a very good point. I understand the birth certificate, there’s a confidential part of the birth certificate and it’s the medical information and the information from the mother that folks never really see as opposed to the legal or administrative portion of the birth certificate, which is what most folks are familiar with. And understanding the contents of those too, I think would be very helpful.
PARRISH: Any other comments? Could we please advance to the next slide? So akin to what I just showed you, this is an overview of the Death Registration System. Again, showing on the far left the collectors, the generators and collectors of the data about a debt. In the middle sort of the state level of actors that are involved and systems and on the right, national systems that are involved.
You may have noticed even at the 30,000-foot level that there are more boxes and more complexity to the arrows, for the Death Registration System, so I just want to point that out, that is true. It’s a more complex system and, as is born out in the tables I developed for the uses of birth and death records, there are more users and uses for death records than there are for birth records.
On the left-hand side, we have multiple players involved in the generation of a given death record and this depends, in part, on where the death occurs and the circumstances and cause of the death. Unlike births, only about half of deaths in the US occur in hospitals, others occur out of hospitals, some are injury-related deaths that may occur anywhere almost. So it’s a system in which there are multiple players that include physicians, funeral directors, funeral homes, medical examiners and coroners for medical legal death, and then the family or other informants who provide information.
Typically, the funeral home has, in the past at least, been the focus of the data collection for this and ensuring that data comes from appropriate people, for example, physicians who would be certifying the cause of death, but in some situations, the death may be investigated by medical examiners and coroners and the person who originates the death certificate in different states may vary.
It may originate with the physician or medical examiner in some states or it may originate with the funeral director in other states so it’s a complicated process here on the left. That’s why there are a lot of dash lines here because it’s harder to show a path that’s the one that’s used essentially all the time.
Many funeral directors and even to some extent these days certifiers may interact with the Electronic Death Registration System which is present in many states though not all states at this time, unlike Birth where the Electronic Birth Registration System is essentially present in all states.
There may be a local register involved in some states concerning registration who does interact with the state vital records office. There is similar to births, a system for basically selling the death certificate or providing it to people who can authorize people who can buy it. And for that money returned back to, again in the same way with births, either the state general fund, state health department general fund or it may, in some cases, go directly back to the vital records office.
There is also interjurisdictional exchange for deaths that may occur in one state or jurisdiction of a resident of a different state or jurisdiction, to be sure that records are present both in the place of occurrence of death as well as the place of the residence of the decedent.
Again, the Department of Motor Vehicles may be involved on getting data as well with other state agencies who need to know about deaths that are occurring in the state to either provide benefits but may need to go to decedents or to terminate either some sort of benefit or alternative of some sort of privilege, for example, a driver’s license that a person has and loses upon death.
Data from the state health department goes to NAPHSIS or again, the same e-system, electronic verification of vital events which it did for births. Let me just note here that unlike births, the EVVE system is essentially used by NAPHSIS for births, 97 percent of EVVE use is for birth. A very small percentage is for death. And the new system just released in the past year by NAPHSIS called the EVVE Facts of Death System. That essentially takes the place of the EVVE system for providing electronic verification of death to users.
As Bill pointed out earlier, these different systems have different numbers of states and jurisdictions that are within them. EVVE has all but New York and Texas. The EVVE Fact of Death has about 40 states in their system so it’s not complete. And even down in the Social Security, there are files down there which I will talk about in a minute which are not complete either.
NCHS receives data from the state and generates from that the death files as well as the National Debt Index which is used by health researchers. The NDI is a source of funding back to states as our EVVE and EVVE Facts of Death. The Vital Statistics Cooperative Program also pays monies related to death registration as well.
Down at the very bottom is one of the more interesting sets of uses of death data which essentially this sort of tries to depict the Social Security Administration’s interactions with the Vital Registration System. The SSA receives from Vital Records Departments in states electronic records from those states that can provide them and for some states though who cannot, SSA may actually still receive paper records.
In any event, SSA compiles all of that information and places it in a very large database that they maintain called Numident which is essentially all of their social security records going back to the 1930s. And from this particular file, they generate two separate files, the full death master file and the public death master file which are depicted here. SSA compensates the health department for these data.
The full DMF is made available to other federal benefits paying agencies, examples being CMS, DoD. These are essentially federal agencies that pay beneficiaries for various things. There are roughly 10 to 15 of these agencies at present that utilize the full DMF. These agencies, it is a little unclear, but it appears that they also compensate SSA for the use of these data, but they do not compensate state health departments. The full DMF is also available to state programs that are federally funded that provide benefits so that’s why there’s an arrow going back to the states from the full DMF.
And then finally, there is what’s known as the public DMF which is made available to the National Technical Information Services which essentially sells – this file has what’s called the limited access data Masterfile and it is available to certified users of which there are roughly 500 plus at the present time who pay for the use of these data. These data are limited, that’s why it’s called limited access because they, in fact, do not contain data obtained from the state on death. This is, in fact, information generated from other sources that SSA collects and is made available to users. So again, reflecting the comment Bill made earlier. You’ve got these different files with different completeness in terms of death and different people get pain for the use of the given file.
So that’s again, an overview of this system with an idea of some of the users of the data and some of the purposes for which the data is used. Let me stop there and see if there are any questions or comments about this particular figure.
MAYS: This is Vickie. Let me ask a few questions that will go to issues of access and availability of the data as well as a way to evaluate those quality of the data. Should in here, the National Violence Death reporting system be a little box because what it does is in terms of the actual record, it adds another source of information that helps one to understand the accuracy – not the accuracy but the conditions of that – And while it’s a separate system, it’s still feeds into the connection to the desk. So that’s one question I have.
The next is there a way to figure out if there’s a better system for the distribution of the death certificate because currently death certificate vary incredibly by cost. They can be once $10 in one place and $56 in another place. And it will require some time with several days in one place and then another you can get in a short amount of time.
In looking at the way in which you have the right-hand set up, it would be useful to be able to evaluate an efficient way to get a death certificate. I don’t think we want to get in the middle of the cost because I think each state uses this for whatever reason. But people need death certificates sometimes and they can’t go about the business of closing estates, et cetera because of how long sometimes it takes to get them. And I have a feeling in this day and age we should probably be able to do that better. So can you comment on those two things.
PARRISH: Sure. First of all, your point about the National Violent Death Registration System is a good one and a box could be added to that which could show both data coming from death certificates vital records as well as, for example, medical examiners and coroners or other sources that help to populate that.
One other system which is not on here either, and this is partly just because of the issue of real estate on this slide, but the Consumer Product Safety Commission, CPSC, also obtains death certificates from state health departments on consumer product related death. That’s another – it’s a small system, smaller than the Violent Death System but another one that could be added to this slide as well. So I’ve made notes about that and I will try to include those in the next iteration.
In terms of a system for distributing the death certificates, the point you make is a very good one. Currently, people are – let me say birth and death certificates because it would apply potentially to both. But currently people are going to their individual state office that has those records. Most of the systems on the right-hand side do not have the full death record. They have only a few pieces of information that essentially allows the system to determine whether a given person has died and then, if that’s the case, most people are directed back the state health department in order to obtain a copy of the certificate if they need greater information.
So it’s a convoluted system and the cost issue you point out, I actually included an appendix in my report that showed this variation in the cost for birth and death records in the different jurisdiction and it does vary considerably. The problem I would see in this is the whole issue of compensation back to the state.
Right now, for example, if somebody wants – let’s say they find out that John Doe has died by using, for example, the EVVE Fact of Death system and they want a copy of the certificate. They would then be directed back to the state. They would pay a small fee to NAPHSIS for the use of EVVE but they would essentially pay the health department for the actual data on the certificate, assuming that they could get the certificate itself.
So it all goes back, in many ways, to the state health department. And you’d have to come up with a way in which all the states could agree and their laws could be fixed so that it would allow the kind of more streamlined availability of the certificates and record data to potential users. I just think that would be a challenging administrative thing and legal thing to try and set up.
MAYS: One of the things I am interested in is the issue of the method of accessing the data. I mean, for some people you literally have to drive or however you get there to the department of records and city hall and places like that in order to get a death certificate. I think that we’re in an age where we can think about protection of data and accessing the data in a way in which why not be able to get this where you can print it out online or something. But it is really very cumbersome at a time at which timeliness for some people is very important but yet, there’s a very cumbersome way that you get this.
And also, we don’t have sufficient information to tell people how to do this. The funeral directors will sometimes help people but when you need like five copies of something like that. In some places you can get them from the funeral directors and other places. You have to go to the Hall of Records to get these forms. And I just am not as clear why now we haven’t figured out a way to make access easier.
COHEN: Vickie, I think part of the issue is each jurisdiction has its own laws and regulations governing access to individual and aggregate records. And one of the goals of the Model Law and — Facts of Death and some of these other systems is to try to unify and standardize the approach and essentially – use their influence on jurisdictions that are more restrictive so that they can provide the services that you’re describing.
Some of the jurisdictions just don’t have good resources and many of the jurisdictions are prohibited by law from providing the kind of access that you’re describing. Again, I think that’s part of the issue.
LANDEN: This is Rich Landen. I like where Vickie is going, and I think our role at NCVHS is more of the enabler of the framework and not – which makes it easy because we’re kind of on the policy side. We don’t have to figure out how to build it, but I think her point is well taken, if we can identify potential framework that makes it possible for the consumer to have the convenience that she was talking about and still allow states to essentially opt-in, somebody wants to build it, states are willing and have the legislation and regulation that allows, they can opt-in. So they can hit 80 percent of the population and not wait to bring the remaining 20 percent along before a third party and willing states make it available to the 80 percent. Thanks.
MAYS: Can I ask another question, Gib? One of the things that I’m not as clear about, or Bruce may be able to answer this, has to do with uniformity of data. Records will vary in terms of the quality of their ability, the death record in particular, of knowing race, ethnicity and in California, we’ve just passed that we’re going to be adding gender identity and sexual orientation to these records.
So I’m trying to figure out the extent to which when data is collected if – like if California starts to do use gender and sexual orientation, whether or not other states do that or states vary in terms of required versus what’s additional in a record and how do you get again that uniformity to occur if you see it as an asset. If a state is very good in making sure they have race and ethnicity, is there a best practices approach that, to some extent is applied to other places. So is there an evaluation of the completeness of the record and a level of best practices that would be adopted for other states?
PARRISH: I will start with an answer and Bruce may want to add to it. The answer is actually yes, there is a system in place. It’s call the U.S. Standards Certificate of Birth and U.S. Standards Certificate of Death. These are revised periodically. The last revision took place in 2003 and that’s essentially, I think, convened by NCHS with participation from NAPHSIS as well as state and they go through the certificate, talk about the items that are on the certificate and they make changes to what those items are. Those standard certificates, and that’s what that is, it’s a standard then have to be adopted state by state, jurisdiction by jurisdiction over time before they are incorporated.
And some states are quite quick at adopting a new revision of the standard whereas others, for example, have only in the last couple of years, finally adopted the 2003 revision. So it varies, as you pointed out Vickie, tremendously state to state in terms of the variation and some states are fast, some are slow. But that’s at least the process that currently exists for trying to come up with a more standardized approach to birth and death certificates in the different jurisdictions and I’ll hand it over to Bruce to see if he has other comments.
COHEN: A couple of quick comments. One, I wanted to ask Rebecca or somebody from National Capital, is there a way that we can get input from some of the public listeners who might be able to answer this question than me?
HINES: Sure, Bruce. There is a Q&A panel in the right-hand side of the screen and if people have any input they’d like to provide that’s where they can type it in. Bruce, I’d also like to point out for agenda management purposes, we’re at the end of this time and I know we have some questions to ask committee members about Gib’s report that was in the E-Agenda book. So when you finish this spread I think we should go to that.
COHEN: Okay. My only comment is there are also edit checks that get built in for quality that have to pass for NCHS to adjudicate with states to make sure the files that are being transmitted meet their standard. So if they are incomplete in certain fields the records get sent back until the file is completed. And states have the capacity to have their own items above the standard certificate, so you’ll find many states that have particular interest adding additional items for their own use. So you’ll see some states that have data that other states don’t. Gib, do want two minutes just to show people what other – the slides that eventually will be available
HINES: Bruce, we somehow dropped the most important slide in the version that’s showing. And really what we wanted to ask all of the members here today is you’ve got Gib’s report. It’s pretty extensive and are there any changes, revisions to the format, especially of the tables that would improve the report’s clarity and organization. Should there be a conclusion or recommendations added to the report? If you look at page 23 –
And is there anything beyond what’s already been so helpfully discussed this morning that’s missing? Maybe we could take a few minutes so that Gib has the feedback from the committee so that he can go hopefully make what’s going to be close to the final version of the report.
RIPPEN: This is Helga. I had asked for maybe expanding, I know that’s a horrible thing to consider because we were only focusing on cost, the financial and the datasets, so I didn’t know if we could do a sweep of the other components. I think I had a list of different themes that we may want to consider. Because if we are going to make recommendations, for example, on federated or not and things like that you need to get kind of also snapshot of what kind of infrastructure are people using at a high level of course. I don’t really know where that went.
PARRISH: From my perspective, that is a bit beyond the scope of what I was asked to do. Certainly, that’s something that could be done in the future and would be worthwhile. I do have the – very final slide that I have is actually a list of additional kinds of information that I think would be useful to collect to get a better idea of these systems as well as how they run, what some of the limitations are related to laws, for example, that Vickie was just talking about.
COHEN: Could someone put that up please?
HINES: Unfortunately, the wrong version is up right now and so what I can do is take that and send it to the folks here. I really apologize, I just caught that this morning. So you have a wonderful list of questions here, Gib, but they are not going to be available to the WebEx producer. I see the wrong version was sent. So what we could do is email them out to everybody or if you just want to walk through them, Gib, orally, and I can also email them out and then folks can send you feedback after the call today.
PARRISH: I will just give people a sense of the kinds of things I think would be useful. One is, as I mentioned earlier, it’s almost impossible to get any information on how much it costs to run vital records offices without calling each state or jurisdiction and then they have to figure it out. That would be very useful to have.
Second, there’s no information directly on revenues that come to the state for the sale of birth and death certificates. Again, that’s not available readily.
Third, it’s not clear state to state, which particular state government agencies receive vital records data for carrying out their activities and whether or not they get any – they have to pay any money for those data.
Next, it’s not clear state to state, whether the state by the records office gets any money from the Vital Statistics Cooperative Programs, in other words the NCHS money, whether they get any money from sale of birth and death data to Social Security and whether they get any revenue from any other federal agencies. Again, that would be very helpful to know.
Next, the final thing is the information that Vickie was asking about, which is some of the information on what access is allowed to vital records within each state, that also seems not to be compiled anywhere that I could find so that it varies a lot state to state as Bruce just said also. And it would be, I think, very helpful to know, in some detail, which particular outside entities can access or not access the vital records, and if so, which parts of the records, which pieces of it, for example, just a fact of birth or death info or also the medical info. So those things would also be very helpful if somebody could compile that kind of information.
Helga, I don’t know if that’s exactly what you’re getting at but that is some information that I can’t get at easily in the scope of my project but that if some sort of a survey were carried out I think would be very useful to inform future work in this area.
RIPPEN: I appreciate and understand scoping. But again, going back to some of the things that we might need in order to make recommendations. Your work is very comprehensive and very well done and so it’s very helpful. So I just always want more.
PHILLIPS: Gib, this is Bob. In that same vein of wanting more. One of the questions was about the flow of data or records back to the generators and I notice there aren’t a lot of arrows on either of the figures that go back to the generators. And I just wonder if you stumbled upon any innovative states up there that are providing information back to the generators of the data in the structured way that helps them feel like contributing the data has value.
PARRISH: I did not stumble upon that kind of information. The only examples that I know of off the top of my head would be that in some of the electronic vital registration systems themselves, they at least provide feedback loops so people have a sense whether or not they are entering data properly and there are also some of them that provide some help in doing that properly. But I don’t really know of feedback directly, for example, back to funeral directors or the birth clerks at a given hospital concerning the data. Again, I don’t know, Bruce, if you have anything to add to that but I don’t know.
COHEN: Only to the extent that quality is a HUGE issue at all sites of data collection and there is an increased emphasis on training for completion of the records, but I think Bob’s point is well taken. I don’t know of any program, perhaps NAPHSIS colleagues may, that incentivize or give feedback to help promote the understanding and efficiency and effectiveness of the system. But that’s a good point.
This end discussion is an appropriate segue to our next topic which is where do we go from here with respect to the National Committee activities on vitals?
Agenda Item: Scoping Future Vitals Statistics System Work
HINES: Can I pause and ask the events host to bring up file D that would be great.
COHEN: We can actually continue this discussion in many ways in the context of activities that we need to do to scope out where we are going. I’ve heard we would like to get more information to better understand the funding. We’d like to get more information to understand who has access. We’d like to get more information to understand issues related to redundancy. We’d like to understand issues related to content. There are an enormous number of issues for scoping where we go next. And I think between the overview of the report and Gib’s report we have sort of a foundation for things that we can discuss about scoping.
I want to thank Kate and Helga for the slides for this section and I’ll go through them pretty rapidly. So again, we can open it up for discussion. We’d love to get feedback from all of the committee members about where you feel, both in the short-run and the long-run, we should be moving with respect to scoping of our next set of activities. So I’ll go through the slides quickly I think and then open it up for general discussion. Next slide please.
So clearly, we’ll need to continue and expand – we’ve agreed that we want to continue and expand on the work that we began with our Next Generation Vital Statistics hearing. Certainly, the two goals are completing activities that we’ve already begun and secondly developing both a short-term and a long-term vision of where we feel we can make a difference. Next slide.
With respect to completing the elements of our current work, we’ve discussed both the hearing and the past report that Gib has done. We’d like to finish those off, certainly. And we will need to get feedback from a variety of folks, certainly the participants for the hearing as well as committee members and folks who are involved in the hearing as well as getting feedback from the committee and the executive committee around the documents that Gib is working on. Next slide please.
So there are a couple elements that we need to consider with additional work. There’s just so much to do here, it’s really important that we develop I think reasonable scopes of effort from folks in the short-term and the long-term. And then general areas are we need to think about what the breadth is of our next set of activities, whether we focus on the specific issues that have emerged or general ideas about the system. And then do we want to focus on specific parts of the system, on vital statistics, vital records, or the vital registration system in general. Do we want to focus on births or deaths or both simultaneously? Next slide please.
And again, as we jump in to the deep end here, there are enormous approaches, varying approaches we can take. How specific do we want to get focusing on these areas or do we want to step back and be more strategic, as Rich said, to develop conceptual frameworks for others to use and adopt with some help in providing a broad direction. And again, I can envision a variety of kinds of activity which make sense, is there low-hanging fruit for short term and how do we see us being involved in a longer-term vision? Next slide please.
It’s come up several times. We have some information but clearly, we need to involve stakeholders, a combination of experts with whom we’ve already discussed these issues and stakeholders who we need to bring into the conversation. And clearly, there are a variety of perspectives. The National Committee’s focus is making all recommendations to the Secretary and, as we all know, the information, recommendations and work that we generate is widely used by a much broader community of folks in addition to the HHS. And we certainly need to integrate these efforts with other strands of activity going on in the committee. Next slide please.
One thought or approach is to develop some use cases to really test out some of the ideas that we might have about how the system could work more effectively and efficiently. Next slide.
And clearly, there is some activities that we will want to build in to our short-term activities. Preparing a letter to the Secretary and again, when we discuss the scope, will there be a logical shorter-term letter of recommendation that emerges after we finish the report and Gib’s project, or does it make sense to wait until we’ve completed our next round of inquiries to write and develop more actionable recommendations. Next slide.
And I think we’ve discussed how we need to bring a broader learning community into these discussions and how we should do this and does it make sense to move our short-term scope in the direction of holding on a roundtable or workshop or hearing that brings folks together, probably towards the end of the year. And the final slide.
HINES: This is the final slide and I just wanted to point out to folks that page 61 of the agenda book has the scoping document in it. So these slides build off of page 61 and 62 in the e-agenda book if you want to also look at that to have a nice outline for what Bruce just went over.
COHEN: We have heard a lot of information this morning. I would like to open it up for ideas about how we can proceed developing our reasonable short-term and longer-term approach to address vitals issues. Helga, you’ve been very active in helping us organize our thoughts about scoping as well as Kate. I’d like to hear from each of you if you’d like about your thoughts since you’ve been considering this for a while. I don’t mean to put you on the spot here. Helga, are you still on?
RIPPEN: I am. Again, I think I’ve been verbal in the conversations to get to this point. I don’t really think I have anything much more to add. But thank you for the opportunity.
COHEN: Kate, you have sort of been a participant/observer here. Again, I want to thank you for your incredible effort helping us pull all of this together. Do you have any observations you’d like to share with us?
BRETT: I guess my thoughts are we have gotten a lot of information from the hearing and from Gib’s report. I am just not clear at the moment that we have created something that is actionable yet. And maybe we need to spend more time identifying those items that could be useful for improving the system in some way and also then vetting that against current efforts because we simply did not hear everybody that’s working on the system and there’s a lot of additional work that’s being done currently.
COHEN: I will open it up to the full committee now. If folks have thoughts about what you feel some of the short-term priorities should be for us to consider moving forward.
MAYS: This is Vickie. I would like to combine an idea that was a comment from Bill and from Rich. I think it would be enormously helpful to have a conceptual model that showed this issue of where vitals fit in doing kind of – as information data that we collect. I think, you said Bill was talking about you start at birth and then you go to death.
I think in order to convince Congress and others about the importance of this data and all of its different uses, it would be nice to have some kind of like a roadmap thing, some visual that actually showed all the ways that this data seeps in and how it supports this bigger health kind of question as well as security in all the different ways that the vitals data is used.
So I think before we kind of send off a report or a next letter, something that would be a very important piece and I think that would help to see who the data users are, the communities that should be involved as well as – I think this would anchor things in ways in which when we want to talk about something, we could point to the importance of particular groups and the role of the data. So that’s one suggestion I have.
The second is, and again I will admit it’s a bias because I know the mortality data better, but if you look at Gib’s slide, you can see the complexity of that data. That’s a data that we now have linked, for example, to NHIS. I think a focus on that data in terms of understanding how it can be – its quality, its access would be useful. And the cost.
COHEN: I would like to promote – I think the two ideas and suggestions that Helga had for doing more work to sort of expand the diagrams that Gib shared with respect to trying to figure out is it possible to figure out more information about revenue. Where the money comes from and how it flows. And is there a way that we can suggest that be done or lay out a framework for that work. I was struck by the fact that Gib said it’s unclear whether Social Security is paying the states any money for the death data they get from NCHS. We don’t even know who is paying for what.
I think there is more work that needs to be done to clarify who is paying for what. First of all, what the what is and how the money flows back to help support the system. And actually, get a better understanding of how much money is needed to maintain and support and secure the system. And whether there are – I was interested in some of the dotted green arrows on Gib’s diagram. Are there points of leverage that can be turned into more active and sustainable revenue streams.
RIPPEN: This is Helga. I guess if we step back and we see all this complexity and we talk about two different systems, one for birth, one for death. They serve multiple purposes. It’s beyond the health sphere. So we do have to ask the scope and our focus. And so even if we say our focus is going to be narrower which is the public health component, you can then highlight some of the challenges going back to other users and everyone needs to put in to, who else, who are also the stakeholders to pay but still focus on the health component. Or, if you step back and say well, we’re going to take on the whole thing, it becomes a lot more complex because you are also – because you can’t help it, there is the states and the local groups.
It’s a question of where should our focus be and there’s no real right or wrong answer. It just then will make us have to do more or less exploration. And I think that’s just something really important because we know it has different purposes which is why data flows are somewhat different and sometimes that redundancy is a good thing because if it is related to our identity, for example, and payment, that’s separate from our health. So again, going back to scoping and perspective and I think that’s something that we have to also consider.
STEAD: This is Bill. I would like to make a couple of other things I would love to see. First, I love Gib’s two diagrams. They are simply awesome. It would help me if there was another view of the deaths – the information in appendix C that is represented in the lower right-hand corner, on the left-hand side of figure two, which would, instead of presenting it as a data flow view, would show the difference in scope overlap and completeness of those various national level sets. I think that would be an additional helpful view.
The other thing I would really like somebody to answer is a simple question. Is there a public health authority that is – is there a federal public health authority that meets the condition of being a public health authority in terms of HIPAA that could receive copies of the Fact of Birth if it originated in a hospital, for public health purposes in parallel with it being set to the local registrar.
And I’m not talking about the technology to implement that. I’m really talking about whether there is something at the federal level that would meet that criteria to allow the health care provider to report for public health purposes to a non-federated agency. If so, that would be a potential way to begin to break open the game.
If not, then the second question I think probably is yes. So does the state health department meet that criteria and if so then I could route it to them, I would at least get it somewhere other than the registrar from the get-go in addition to it going to the registrar for administrative purposes. I think it would be very helpful to have basically – I’d love the answer to that in essence legal question.
PHILLIPS: Gib, this is Bob, and Bruce, too. I don’t want to pollute this whole issue, but I see pieces of this that could easily fall into the conversation about the Commission of Evidence-Based Policymaking. I just want to put kind of a marker here to say that some of this may fit into whatever we decide to do around that. I know that conversation is coming up so I just wanted to highlight that opportunity.
COHEN: Thanks for that reminder, Bob. Are there any other comments or suggestions that we can turn over to the folks who will be developing the scope?
LANDEN: First off, a ton of excellent work in both of these reports, the hearing report and Gib’s report. And I think there is just so much good basic information in there. Job well done, thank you.
Second, as far as exploring further the details of the revenues and the business models of the various jurisdiction, I think the basics show us that it’s fairly chaotic and I’m not sure it would be a good return on investment to go too much farther down that rabbit hole because I think the data we’ve got already shows us that each jurisdiction is going to be different. So even if we find out all of the jurisdictions, I’m not sure how much more actionable that information will be to us in formulating a go forward plan.
Third, on Bill’s comment, I think there’s parallels for the registries, disease reporting registries, cancer registries and what not, in an electronic world there’s really nothing that prevents us from capturing the data and sending it to two different destinations simultaneously, provided all the authorities and the privacy, confidentiality and governance can be worked out. So I like where all this is heading and I’m very much looking forward to participating in whatever we determine our scope.
MAYS: This is Vickie. I just want to comment on going after the issue of payment by different groups. I just don’t know if that’s going to get us what we want. At the end, once you find it out, I don’t know whether we just make some people upset and other people not. I don’t know if Congress or someone will step in and try and say, well, if you don’t pay, we will cut this –
I think we have to be very careful about that action and I agree with what Rich just said, I don’t know after we have it what – like what the outcome would be and I think we want to know that knowing that information leads us to something specific other than saying to people you need to pay.
RIPPEN: This is Helga. I would concur. I think that highlighting that there is a challenge and there isn’t potentially enough investment in the structure and infrastructure and that it’s at risk and then highlighting value and benefit always allows for – it’s a different type of sell.
MAYS: Yeah, I agree.
HINES: This is Rebecca. It is 11:25 and I am wondering whether we want to take a 10-minute break and then move to the CEP and then the Work Plan because all of this feeds into that Work Plan, everything that’s being discussed.
COHEN: Thank you, timekeeper.
HINES: Would 10 minutes be sufficient? We will resume at 11:35 and so if we could bring up slide E to let people know we’re on a break and we will reconvene in 10 minutes.
COHEN: Thank you all for an incredibly robust discussion and great feedback. Bob will resume facilitating when we reconvene in 10 minutes.
Agenda Item: Commission on Evidence-Based Policymaking (CEP) Report and Data Ecosystem Project Planning
COHEN: Go ahead, Bob.
PHILLIPS: I don’t see the slides up, yet. This is a very preliminary look by the Subcommittee on Commission on Evidence-Based Policymaking. It’s really background for the discussion is early, but to help us frame what might be interesting in it to take a look at once it settles a little bit.
HINES: Bob, can you speak more directly into your phone. You are a little distant.
PHILLIPS: So the first slide after the introduction slide so it’s actually the second of the set if you have them up and this is block F. The Commission on Evidence-Based Policymaking was created by legislation that was cosponsored by Speaker Ryan and Senator Patty Murray and was passed in late March of 2016 and the 15-member commission was appointed by the President, the Speaker of the House, the House Minority leader, the Senate Majority and Minority leaders. The focus of the group is one-third on privacy and two-thirds experts on program administration data or research.
The full report is available and encourage you to take a look at it. And you’ll see links later to it as well.
HINES: The slides are up and it’s got the link. And I think most people have taken a look at it, at this point.
PILLIPS: Wonderful. Just one other point, I was co-chaired by Katharine Abraham of the University of Maryland and Ron Haskins from Brookings. They have met with us twice, in February and September of this year and their final report was published in September of this year. And fairly quickly on the heels of that it was taken back up by the house – if you go to the next slide, slide three.
And enacted was House Resolution 4174 that was passed on November 15th. The six chapters of the report – because it’s really bookended by a vision statement and then buy a what could of more and better evidence for policymaking are four chapters on recommendations that really focus on modernizing privacy protection, improving access to federal government data and that is restricted data by and large, strengthening federal capacity to build evidence and implementing a national secure data service and the infrastructure around it.
And the Bipartisan Policy Center has actually provided technical assistance in the form of evidence-based policymaking initiative which has a summary that’s available under the Foundations for Evidence-Based Policymaking Act of 2017 so really focused on the House bill. I also found a link that’s not in here that we can provide.
It was the Committee on Government Oversight actually produced kind of a summary of intentions of the bill. I’ve not actually seen that mechanism used before. But kind of summarizing what the bill was looking to achieve. The bill passed the House, has not been taken up by the Senate so we are a little bit in a holding pattern, waiting for the Congress to finish its work and for HHS then to start its processes of enacting the rules around it.
Slide four really focuses on the third chapter and strengthening privacy protections. And just to give you a sense of some of the recommendations, recommendations three of that chapter so it’s three-three, talks about the creation of an agency official for data policy within each of the agencies, a chief data officer. Recommendation three-four talks about the codification of statistical policy directives, really under OMB and then recommendation three-one talks about creating a capacity for a comprehensive risk assessment and analysis of data sensitivity. So it is looking across all agencies and trying to enact this infrastructure for security.
Slide five, improving secure access to data the Bipartisan Policy Committee really highlights recommendations from both chapters two and four with chapter four, recommendation five, the establishment of data inventories with metadata and recommendation four-two, the last one here on this slide, creating this advisory committee on data for evidence building or a national secured data service steering committee. And chapter two, recommendations three and eight, point to the availability of data for statistical activities and the single process for research or access to data.
So I just want to plant that there were several recommendations in both of these but it’s about honoring what we’ve committed to in this country in terms of the confidentiality of data that are collected with that as a stated purpose or state protection. But then being able to use those data, both within federal agencies and in a protective way to share them with researchers.
Slide six really focuses on chapter five on enhancing government capacity. The creation of an agency with evidence building plans, the Bipartisan Policy Committee describes them as learning agendas within each agency. And if you look at the House bill it talks about how those have to be submitted by February in the first year of each administration. Recommendation three is about a government wide evidence building plans and also within that same recommendation in the bill section is a certification of the coordination of evaluation units through interagency Council for Evaluation Policy. Five-one is really focused on the establishment of chief evaluation officers and an inventory of evidence building units and what all of these slides are showing is how those recommendations are being addressed in terms of sections of the bill.
And then the last slide, slide seven, really refocuses on chapters three and five and the recommendations under them that the subcommittee at least has been looking at as probably the most relevant for us to consider, or at least to consider first, is this number three, really focus on enhancing privacy protections for federal evidence building and five, strengthening the evidence building capacity within the federal government. And the page numbers are listed there in the commission’s report, if you want to look at them.
So we wanted to bring this to the subcommittee as I said, to start the conversation but not to start formulating what our plans are just because, as I said, the Senate has not taken up the bill and HHS has not had the full Congressional intent in front of them to start developing rules or processes that they want to do to enact those. But it is a good time, I think, for us to have some discussion and question about that.
I want to really thank Rebecca and Kate Brett. Without Rebecca Hines help and Kate’s this slide set would not exist. So thank you very much for doing the heavy lift.
HINES: The kudos go to the Bipartisan Policy Center. I listed all the information. They did an amazing job of a side-by-side between the report and the House legislation. I didn’t do that, they did it.
PHILLIPS: Bruce or Bill, in particular, any thoughts at this stage?
COHEN: None from me, other than I think that once HHS has developed some direction, I think this really fits into our wheelhouse.
STEAD: I think the legislation, at least as has been passed by the House, would provide a significant foundation to move forward on the commission’s overall recommendations. And I think that the recommendations that we made, that Pop Health made, and the Full Committee approved, as we did the work around the measurement framework, and as we look at recommendations flowing from that I think that they would be nice use cases for how to bring the law to life. I think it also would be a good platform for the work that came out of the data access and use workgroup around healthdata.gov. So I think there’s a real opportunity here and obviously the connection to vitals is another possibility.
DORSEY: This is Rashida. Good afternoon. I just wanted to say, one, thank the committee for taking interest in this and wanting to support HHS as we move to implement this law, should it pass, and I will just share that from the HHS perspective we are certainly following this closely. We are analyzing what the implications of this bill is or what could potentially be for HHS. And I foresee the NCVHS certainly having a role in contributing to HHS as we move into the implementation phase of this.
And so I expect in early 2018 to have I think some more targeted requests with some targeted areas where I see the department could potentially utilize the NCVHS or where recommendations from the committee could be very helpful to us in a particular area. So thank you for certainly positioning yourselves to be of service in that way because there is quite a bit in this law as it relates to data and data access and some other things. And there are many ways that the expertise of the committee could be very, very helpful to the department.
PHILLIPS: Rashida, this is Bob, just a quick question in that regard. I have not been on the committee when there’s been a bill come to HHS to consider that they asked for input on. How does that happen? Does it happen during the rule making process? Is there a preliminary process where you ask questions of us?
DORSEY: No. Once – there is an internal process where HHS is able – or agencies, not just HHS – are able to provide feedback on many draft bills. But in terms of input, once the bill passes or gets to that place where it could pass then the department can engage with NCVHS on the implementation piece. And there are areas where, as we go into the implementation phase, where we could use some input or where recommendations from the NCVHS could be useful for us.
PHILLIPS: Thank you. Bruce, just as a commentary, in reading the bill, I noticed that it wasn’t scored by OMB, which means it had no cost implications. I thought that was curious, but it also probably explains why it moved so quickly.
COHEN: Good point.
HINES: You have hit on an interesting aspect, Bob.
STEAD: My guess that is why it is being broken up into more than one law. Because this is meant to be a foundational law that makes way for a second law, probably a third law.
COHEN: Do we have any sense of the timetable? For consideration?
PHILLIPS: From what I have read, it hasn’t even been scheduled for a Senate hearing but, Rashida, you may know better.
DORSEY: Yes, that is what I was going to say. I have not seen where the bill is scheduled for the Senate yet. But, we learned with not much notice that it was going to be reviewed by the House, very, very, very short timeframe. So it could be a very quick turnaround, I don’t know.
PHILLIPS: Any other comments or questions from the rest of the committee.
Agenda Item: HHS Data Access Issues: Framing the Scope
HINES: Well that’s great timing. We can move onto the Work Plan and we obviously have a placeholder for this so to our event host, if you could bring up file G please and also have – I think we might need to have H at the ready too possibly but just bring up G.
COHEN: And Bob and Vickie are going to talk a little bit about the potential project around HHS data access.
HINES: If it is possible to give me, Rebecca Hines, access to this in case we want to make any live edits, that would be great, and make it bigger as well. Thanks.
So I guess we’re at the next part of the agenda, data access issues.
PHILLIPS: Let me, if I can, set up the Health Data Access discussion because it’s also quite preliminary but – and I want to thank Rebecca Hine and Vickie Boothe particularly for helping me frame this too. And Vickie Mays for a conversation that we had just last night about how to organize this. I won’t speak for Vickie of course, I’d love to have her weigh in in just a moment.
But just to set it up, members of the committee have experienced some difficulty with data access. And we’ve also had external stakeholders give us feedback about particular datasets that were public, and now are no longer available, or at least in the way that they had been available. And so just by way of history, I just wanted to walk through a few of the data opportunities that have come and gone and then with Vickie, set up how we think we might be able to organize this conversation. It’s very raw and it really is designed for input from the subcommittee.
Let me start with the Community Health Standards Indicators Project, which began at HRSA in the ‘90s with cooperation from the Public Health Foundation and ASTHO and NACCHO and others and really launched in 2000 and then kind of got disrupted in 2003.
There was some lobbying by the Public Health Committee for its return and it was reinvigorated in 2008, really reopened under CDC rather than HRSA in 2012. And then was shuttered again this year in August of this year, and it was important because it was public health profiles for all 3143 counties in the United States and it’s really not reproduced by the County Health Rankings Project. There was some overlap in the core measures at each.
But CHSI really had over 300 measures at the census track level with 78 core measures including things like mortality data broken down by age, race, gender, and inclusive of some of the social determinants measures with standard errors around those. So it was a pretty robust project.
It also had means and ranges for peer counties and peer counties could look at each to view one-by-one whereas the Community Health Rankings Project only has 29 measures with no standard errors available. So it’s not a criticism of the Community Health Rankings Project but it is to say that it really is not a replacement. And so some stakeholders that use those are fairly frustrated by their disappearance in August.
Similarly, the Department of HHS Health Indicators Warehouse and Behavioral Risk Factor Surveillance Systems have both been available publicly in some important ways that are gone. The Health Indicators Warehouse was decommissioned in June of 2016 and it really maintained BRFSS data along with data from other sources using a rolling seven-year average in order to track changing rates over time around things like heart disease and cancer mortality.
And right now, those estimates are not being released and in the CHSI which I just talked about, not only in August of this year, it was another place that the seven-year rolling average data could be used. But with the estimates no longer being produced and with both of those platforms gone, access to that rolling average and BRFSS data is not accessible.
The Community Health Rankings also continues to need those same BRFSS data but again, since the seven-year rolling averages are no longer available, they are relying on some other modeling techniques that have been called into question in terms of the comparability to those rolling averages.
And there are some venders who have been using those data to produce mapping tools, to build mapping tools, and to feed data to folks in different ways that are having now to roll back to those data modeling estimates rather than the full seven-year rolling estimates and it’s causing some consternation because you can look at one tool and see for the same census track some wildly variable estimates of what is happening. They are like prevalence of smoking.
The 500 Cities Project, which the Robert Wood Johnson Foundation funded, has produced some important data for those 500 cities but they leave most of the counties and census tracks of the country alone. And there’s been at least one published study showing that the modeling of the BRFSS data for that effort may also have some problems that the seven-year rolling average was more reliable for.
And then lastly, the Health Data Interactive Project ended in July of 2016 and it provided online interactive tables on health and well-being of the US population. It was pre-tabulated for several different covariates around age, race, ethnicity, gender, year, geographic location sometimes, income sometimes and urbanicity and it had standard errors around those. And like I said, it also disappeared in July of 2016.
So we’re starting to hear a growing rumble from the business community and the research community about the loss of some of those capacities. So Vickie if you’re comfortable, I just wanted to walk into the way we kind of envisioned potentially bucketing this for the subcommittee to start to talk about it. Do you want to talk about those now?
MAYS: Sure. In thinking about this data change and data loss, there are different ways to look at it because I think each one has a different solution. It’s not a one solution will fit all. I think one of the buckets to think about is that we’ve lost our access to data because of cost.
In some instances, data has gone away because agencies are indicating they are not sufficiently funded, that the cost of collecting, storing and curating this data has gone up and with flex funding without additional resources, they can’t do it. So there are some decisions that were made purely based – I shouldn’t say purely, but based – the reason that we’re given it is economics.
I think there’s a second loss of data that has come from linkages being removed. That is based, I think a bit more, on agencies seeing their responsibility for maintaining that data and how they interpret it, laws of confidentiality, privacy, security, even cybersecurity issues as different. So as an example, there used to be this great linkage between MEPS and NHIS. I think Bob can even explain that. But that changed. So there’s a lot.
But that had to do with people’s interpretation of rules. It had to do with individual’s perception of how they think the access is being made better when constituents don’t see it that way.
And then I think the third is the loss of data based on a perception of what is really health and what should or shouldn’t, for example, be funded. There we start talking about things like intersectoral data that we need for health. So losing, for example, access to climate data when we know from a public health perspective we have to deal with very hot summers and how many people are going to die from that. Or dealing with the ability to be able to predict disasters. So to me, there’s different buckets as to why data is missing and those different buckets have different solutions.
PHILLIPS: To Vickie’s – that second category, that second bucket of data linkages, some of it may also have been unintentional. I know some of the research data centers were set up with the goal of being able to interact public with restricted datasets for researchers. Tis came up with the Board of the Scientific Counselors too, that sometimes when you pull the public data into the RDCs, then only the researchers can touch it. You lost access to the publicly available data by pulling them in. I know that was, like I said at the BSC, that was a long conversation.
So reactions to the framing of that or I know we probably have gaps too in what we’re describing about the ability to access data?
MAYS: If I can add just one other component, and that has to do with the issue of entrepreneurs and the business world. Part of this change in data has significantly impacted different groups’ ability to provide the public data, not provide researchers, et cetera, but part of what these entrepreneurs often to is break data down in very simple ways to give you like the best hospitals in the nation, et cetera. So we have to also think about for the business community their ability to help the public be able to utilize data that’s already collected and it’s also been short-circuited.
PHILLIPS: That is a very good point, Vickie. Not only short-circuited but sometimes now they are having to rely on less reliable data and so it actually might create publicly available, digestible data that are not right, may not be correct.
COHEN: I think this was a really nice summary. I like, Vickie, your idea of thinking about different buckets of reasons why data have gone away. And I like the idea of linking – creating the buckets, identifying the datasets, looking at what data are lost and who is impacted by that loss. Have you thought about what kind of – and it seems to me like the project makes the most sense, has to do with sort of extending these observations into more information gathering to clearly describe the breadth of the issues. Have you thought more about what a process over the next year might look like?
MAYS: I will leave that to Bob.
PHILLIPS: I think that is probably where we need to turn to the Work Plan because I think we’ve tried to lay out how we might approach this. You want me to start with that middle row about this issue, Bruce?
COHEN: Yes, that is a great idea.
PHILLIPS: We had talked about doing some more fact finding, really making sure that we have covered some of the landscape of the important problems with accessing data that fit the buckets Vickie described so well. And then talking with the Data Council about decisions that might have happened that cause these problems or what they’ve heard about them and what they see as a potential process for change. So it’s entering kind of a collaboration with them to frame what the problem and potential solutions might be. And that’s what we talked about doing in the first quarter of next year.
And in the second quarter of kind of opening it more for fact finding and bringing in stakeholders and looking at relevance around the Commission on Evidence-Based Planning and the related bills and how it might fit into that framework of effective evidence-based policymaking.
And then in quarter three, completing that process if it rolls over and we need to really involve more stakeholders in that process. And then quarter four, really starting to summarize that, getting back with the Data Council to talk with them about what we found and what they’ve found and potentially other decision makers who might have a roll in those three buckets. And then really developing some recommendations with the hope that we might be able to deliver those at the end of the year of in the first quarter of the following year.
LOVE: Bob, this is Denise, and maybe Rebecca can answer this. It seems like I heard that the Data Council was not going to be continued or was I just mistaken.
DORSEY: This is Rashida. I know you asked Rebecca and Rebecca, I’m sorry, if you don’t mind if I answer because I’m on the Council. So if you have questions about the Data Council or working at the Data Council, I would certainly be that conduit and happy to do that. But the Data Council, we are most definitely still meeting, and we are still in existence and still supporting the department.
LOVE: Good to hear. Good to hear. Thanks. I know why I thought that.
PHILLIPS: Rashida, this Bob. I’ve not talked with them. Are you at liberty to say whether they are looking at this independently or how open they might be to talking with us in the first quarter?
DORSEY: I think, the Data Council, we are definitely thinking about our agenda. And there are several things going on, I think, within HHS, that will certainly be drivers for what we focus on. The issue of looking at data access and why certain systems have sunsetted and the implications for that, it is not something that has been on the radar.
That being said, it isn’t that there couldn’t be interest and, certainly with the Data Council helping too. And I think the Data Council and the Data Policy Division that help to potentially shape what something like this could look like to be a useful product for the department. So I will certainly be in close touch with you and also the timing that would work best for the Council.
COHEN: Rashida, I wanted to follow up or begin to discuss it. Are three other key organizations in the Department that you think should be involved in the discussions around data access? Either at CDC, NIH, HRSA, et cetera.
DORSEY: I think starting with the Council is good because we have representation from all of the agencies in HHS. And then from there, determining within a particular OpDiv perspective, if there’s someone else or some other people who should be engaged then we can certainly help with that. But I do think that you certainly want to have, at least have an opportunity for the Council to give some initial feedback because there could be some lesser known data initiatives that may have sunsetted that we might not be aware of.
And then, within an agency, the CDC for example, there could be a few people who it would be appropriate for us to engage with. We briefly discussed some internal efforts related to improving the access to our reimagine efforts that have not been released yet but as those things are rolled out then I think we’ve got – this work is complementary and supportive to that as well would also be important and I’m also engaged with the team leading that.
It is definitely on my radar and my intention to keep the NCVHS well informed so that you can develop products and shape your work in a way that is aligned with where the department is right now because that’s one of our data priorities.
MAYS: I think there are groups outside of the Data Council that would be useful to interact with, that have data that’s important and that would be DoD and the VA, that would be the Census Bureau and SSA, particularly given all the disability stuff. When I was sitting on the IOM, I know that the disability data and the ability to establish disability, that there are changes and things that are occurring that are making that difficult.
I know that we have some issues I think with the Department of Defense, that ranges from the ability to get certain data in a timely fashion that has complicated issues at the VA. So I think those might be some others to consider.
PHILLIPS: Helga, are you still on?
PHILLIPS: Sorry to call you out, but I thought you might have some ideas about this as well.
RIPPEN: With regards to – well, there’s the HHS Data Council conformance, but there’s also, with regards to understanding kind of the reach and the implications, there are probably a lot of, I don’t know, sites that are actually talking about these (indiscernible) and might actually help to identify datasets that might be offline and also potentially the individuals to talk to as it relates to impact on business. The data pools may be – sometimes they are policy related, sometimes it’s financial decision making, and if you can get some input into potential impacts from the businesses, I think it could be actually pretty powerful.
MAYS: Those are the things that the Data Access Group often would raise, and they were, I think, intimately aware of some of those issues.
RIPPEN: I said, actually tracking some things. Anyway, I don’t know, some of my friends might know. I think to your point, Vickie, I think some of the data, the subjects that you had led, would know. As far as just trying to find out what data system – because remember, you mentioned cross agencies, that do have a significant impact and I think, and especially in the context of kind of the determinants of health and (indiscernible) those kinds of things, we can paint the picture and get a better sense. They may even provide maybe some guidance or recommendation as far as how does one make a decision to pool datasets and understand the implications of pooling that. Just thinking outside the box.
PHILLIPS: Thanks, Helga. Any other comments about the process that was laid out for managing this over the next year? From anyone?
STEAD: I guess the one suggestion I would have is that, which I think you may intend with the way this is written, is to try to make the iterations discrete. It might be that in Q1 we figure out how to summarize our current – the things we have heard about or discovered, as if you will a preliminary fact base that we then take to the Data Council and possibly others, for either verbal or – with the Data Council I think it would be best if Rashida can work to handle that verbally and in person.
But with others we may want to have, in essence, an electronic factfinding of some sort that gives us a way of knowing how close we are to understanding the view of the problem and then to sort of have a go or no go as to what a next form of giving input would look like. It might be tightened up in that way. Just a thought.
PHILLIPS: Thank you, Bill. So we might build that in as a go no go estimation somewhere around the end of Q2.
HINES: It also sounds like in Q1 there needs to be something here that basically says the summary document for input. I think I heard, Bill, you say concrete.
STEAD: I am wondering, do we know enough to take the kind of things that Vickie was sharing on the phone and construct them into versions 0.0 of an initial fact base that we might even be able to share with the full committee at the January meeting. That would then give us a better lens. So I think that would be helpful if it’s feasible, that may be a bridge too far.
COHEN: I think we do have a lot of anecdotal information. Summarizing that and synthesizing it and organizing it in one spot would help us move forward. So I don’t know whether we can get it completed by the January meeting but I think that’s a great initial goal.
Agenda Item: Draft 2018 Work Plan – by quarters including NCVHS Measurement Framework
COHEN: We sort of rolled over into the – thanks Bob and Vickie, for leading us in the conversation. We’ve moved on to the section which is a review of the Q by Q document here for our Work Plan.
Bob, maybe I’ll just take us through the first row and then you can quickly summarize the third row and I’ll quickly summarize the fourth row and then we can move on to the next slide which is really an effort to reach out to all of the subcommittee members and all the full committee members who want to be involved in our activities. So I’ll just take us through row one here which we really sort of went through already in our morning discussion.
Q1 is really going to focus on completing the activities and begin laying out the next steps and scoping of visions for Next Generation Vitals and in Q2 we will do any follow up necessary but hopefully will have move forward to begin to scope out our short-term activities and, if possible, begin planning if we do want to have a Q4 hearing or workshop. As well as figure out who wasn’t at the table and who we would like to hear from.
And Q3 really is continuing the scoping activity, preparing for a Q4 gathering and to discuss whether we feel there could be some preliminary recommendations for the department or not. That sort of lays out the work for the Next Generation Vitals path. Any questions or comments or feedback?
STEAD: So you do not think that you would be driving toward a hearing on alternatives that would inform our recommendations – not trying to drive towards something like that in Q3. The soonest you would want to get – I guess maybe another way to state the question, given the Committee’s – given what the Committee learned and the information Gib has brought forward, do you think we will be able to get to recommendations without another convening or hearing to in essence have key stakeholders react to alternatives before we generate recommendations?
Or do you think the committee will get to where it can approve recommendations without such a convening activity? That’s a real root question and if you don’t think the committee can then is there a way to go on and try to get such a convening thing done in Q3 so that we are in a position to close down the recommendations in Q4. Long question but that’s the thinking.
COHEN: Again, my short answer is I don’t know. I guess I’m not sure whether it makes sense to have – whether we’re going to be prepared for recommendations before we hold another event and if we are, would those recommendations be broader rather than specific? I just don’t know –
HINES: Bruce, what we have talked about is actually developing different approaches that then there would be a convening where people, stakeholders could say, oh, we like this approach, or this approach seems problematic because A, B and C. So I think had this discussion I guess at our recent Pop Health call and that’s not reflected on the Work Plan.
COHEN: Well, I don’t know, have we determined that’s what the scoping task is going to be? I thought that was part of the scoping task. Is the scoping task going to be to lay out these alternative options or is the scoping task larger? I don’t know the answer. Do you think we’ve already decided?
HINES: What I heard was the next step would be to actually draft straw person and I think the Bill’s legal question was getting at that because if we don’t have the answer to that then we don’t really know if we have an approach or not. That’s what I heard but if people don’t think we’re at a place where after we have the report and after we have Gib’s analysis, we have a lot of information. The question is do we feel confident enough to come up with option A, B and C to put forth for another round of input from stakeholders.
COHEN: I’m sorry, I’ve talked enough. I’d love to hear from other committee members.
PARTICIPANT: I think the question is scope, that I guess we talked about earlier, and then I think depending on – we’re going to have to have some pretty intense meetings early next year, or late this year, to really flesh out based on the great work that we have of the summary and also the paper, but also the report on the meeting. I think then we can sketch out what we think if doable. But I think it’s hard to say for certain.
STEAD: Somehow, I think we are getting wrapped around the axle because I think that by all means, whatever we put together now, will be a draft. And so what we need to do is work back from the outcome we’re trying to achieve and piece together what we think a realistic process is given bandwidth. Be comfortable it can change but if we don’t get process milestones in place that we manage to we are likely to drift more than my guess is you really want to.
We will definitely get the first two – I’m assuming we will, and if it gets written into the Work Plan – so hopefully we will finalize both the report of the hearing and the environmental scan in January and we will get them out and that will be great help to people. But I would like to see us try to get to where we were able to develop recommendations and my gut is that’s going to take a hearing before we’re able to do it. But do as you wish.
PARTICIPANT: I concur. I think we do need a hearing to review before we release.
PHILLIPS: Bruce, this is Bob, I agree.
COHEN: Any other thoughts about the Vitals track?
PHILLIPS: Bruce, I have a question for Rebecca just about looking at this Work Plan and the potential for many hearings next year. I know we have limitations. What’s our capacity in that regard.
HINES: We are not going to take that at the subcommittee level. We are going to have each subcommittee basically figure out what would make sense and then on December 7th we will harmonize. The executive subcommittee will look at each of the three Work Plans. It’s certainly a good question but we really don’t have enough information yet from the other two subcommittees to know and then there are some other interesting wild cards floating about. So as things start to gel a bit more, we can line up all the puzzle pieces and do some horse trading in terms of what happens when.
PHILLIPS: Bruce, do you want me to do the last row?
COHEN: If you do the commission on the Evidence-based policies, there’s a fourth row that I’ll do really quickly.
PHILLIPS: Sorry, I am looking at the old document. And as suggested what the slide said. This is just really entirely dependent on what happens when the Senate takes up the bill and whether it passes out of Congress and whether HHS takes it up then. So understand that these order boxes could shift.
But the thought was that in the first quarter after Congress enacted that we would review the overall Congressional legislation just to be prepared for requests from the department for assistance. And then in that context decide whether that’s what NCVHS and the subcommittee want to actually do and how we want to do it and that includes the idea of whether recommendations should be part of that effort.
And then as the second box indicates it depends on all of that happening in which ever quarter it happens, if we’ve decided to move on to formal recommendations, particularly if we’ve been asked for help or assistance. We’d spend at least another quarter I think developing those and another probably finalizing those and then potentially getting stakeholder input on those. But again, all those quarter discrete decisions are going to depend on what happens in Congress. That’s all I’ve got Bruce.
COHEN: Great. I think that says it all. The fourth activity really is informational. The measurement framework that we successfully completed last year has spawned two exciting external processes. The first is related to Shoma’s convening of workgroups to continue with this work and they are, right now, in the process of getting folks to review existing measurement frameworks to identify measures that have a good measure to populate these subdomains as well as other activities and they continue to meet on an ongoing process.
The second is the US News and World Report Project, they’ve already collected preliminary data at the county level for the approximately 16 measures that they have identified in their ranked counties in a very preliminary fashion and folks are reviewing their work with the intention of publishing I think early next year. And this row is just intended to keep us updated with activities with regard to the measurement framework that we developed and promoted. And so that’s just a placeholder for that activity. Can we turn to the next slide please?
HINES: So that would be H-2?
COHEN: Yes. And this is actually I think the most important slide of the whole session.
HINES: And while we are waiting, I just want to say if there is anyone from the public on the line, if you have any public comment, you can type it in to the Q&A box on the WebEx channel.
COHEN: So, essentially, we’ve identified three ongoing projects that the Population Health Subcommittee is going to be involved in and I think this may create an enormous scope of activities so we want to develop workgroups for each of these projects. And certainly, those with primary affiliation in the Population Subcommittee and we would of course welcome additional committee members who aren’t primarily affiliated with Pop Health to join any of these activities.
And feel free to sign up for more but if folks on the phone today want to identify the projects that they want to work on or if folks want to think about the projects, we really would like to form these workgroups and then each of these workgroups will develop their own meeting schedule and call schedule and be able to attack the Work Plan as we just displayed.
So is anybody on the phone who wants to identify themselves with any of these workgroups now?
COHEN: Okay. Well, please let Kate and Bob and me know, so we can complete the organizations for these workgroups so that we can move forward on the projects. These projects won’t work unless we can get enough critical mass devoted to each one of them to really move them forward. We’ve bitten off a lot of work, potentially great work, but we really need involvement from all the subcommittee members and would welcome involvement from all the committee members as well as we move forward on these activities.
Were there any final comments committee members want to make before I turn it over to Rebecca to open up the lines for public comment and a minute or two?
COHEN: I appreciate everyone sticking with it. A four-hour phone call is tough sledding. so I really thank everyone for their commitment and their attention.
STEAD: I want to second that. You all have made huge progress over the last few weeks and I’m very grateful. It’s awesome.
HINES: To our event host, if you could move us to slide I just to let anyone on the line know that this is your opportunity to provide comment to the Population Health Subcommittee. There’s a Q&A box on the right on the WebEx channel. We did get one email this morning, so thank you for that. It may be that we set a few minutes back, we can wait one more minute.
COHEN: Please remember as you think about what we’ve discussed, we would welcome additional feedback via email from committee members and the public.
HINES: Yes, and I just want to emphasize anything on the two vitals from specific products, the report and Gib’s draft report, if you can have comments to us by December 8th that would be super so that we can turn the next draft of these around. And we should probably send out an email to that effect too, just so if there is anyone who dropped off the line, they will have that.
COHEN: That is a great idea. Gib would like feedback by December 8th on his document.
STEAD: That would really be great because then we can – I would love to see it hopefully get approved at the January meeting of the full committee.
Geneva sent a Doodle pole and said the goal was to talk about calls also on this call, if my memory serves me right. Were we going to do that?
HINES: We have a call set up for December and so we are hoping everyone would fill out the scheduling pole this week so that we can set up the first half of 2018.
BRETT: This is Kate. So, yes, that Doodle for just January through March was sent out.
COHEN: And I hope that these work teams get organized. There will be meeting schedules set up independently for these three paths.
So I think that pretty much does it. Do we need to officially adjourn?
HINES: The meeting is adjourned. You can put up the adjournment slide and for those of you who are interested in four more hours today, the Privacy, Confidentiality and Security Subcommittee will start off at 1:30 and there will be a Beyond HIPAA panel with five guest presenters. So we hope you can join us then.
(Whereupon, the subcommittee adjourned at 12:50 p.m.)