Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

September 28-29, 2016

Courtyard Marriott/NoMa-Gallaudet, Washington, DC

MEETING MINUTES

Note:  The transcript of this meeting and speakers’ slides are posted at ncvhs.roseliassociates.com. Please refer to transcript for details on presentations. Transcripts are linked to the meeting calendar, and slides to the agenda. NCVHS letters and reports, once approved, are also posted on the website.

The National Committee on Vital and Health Statistics was convened on September 28-29, 2016, at the Courtyard Marriott Hotel/NoMa-Gallaudet in Washington, DC. The meeting was open to the public. Present:

Committee members

Walter Suarez, MD, Chair
Bruce Cohen, Ph.D.
Nicholas Coussoule
Llewellyn Cornelius, Ph.D.
Barbara Evans, Ph.D., JD
Alexandra Goss
Linda Kloss, RHIA, CAE, FAHIMA
Richard Landen, MPH, MBA
Denise Love
Vickie Mays, Ph.D., MSPH
Michael O’Grady, Ph.D.
Bob Philips, MD
Helga Rippen, MD, Ph.D.
David Ross, Sc.D.
William W. Stead, MD

Absent:

Raj Chanderraj, MD, FACC 

Lead Staff and Liaisons

Rebecca Hines, NCHS, Exec. Secretary
James Scanlon, ASPE, Exec. Staff Director
Rashida Dorsey, ASPE
Terri Deutsch, CMS
Maya Bernstein, ASPE
Kate Brett, NCHS
Jim Sorace, ASPE

Others (not including presenters)

Debbie Jackson, NCHS
Katherine Jones, NCHS
Marietta Squire, NCHS
Gail Horlick, CDC (phone)
Natalie Gonzales, CDC (phone)
Kelly Turek
Virginia Cain, NCHS
Mike Lincoln, VA
Susan Kanaan, consultant


ACTIONS:

  1. The Committee unanimously approved the Report to the Secretary from the ACA Review Committee.
  2. The Committee unanimously approved a letter to the Secretary on the HIPAA Privacy Rule’s minimum necessary standard.
  3. The Committee unanimously passed a motion to draft a letter outlining recommendations regarding ONC’s recently published “Draft 2017 Interoperability Standards Advisory.” . The recommendation will encourage ONC to include a suite of standards already approved for electronic birth and death reporting to encourage further development and eventual adoption by state vital statistics authorities, EHR developers, hospitals and physicians.

―DAY ONE―

Welcome and Introductions

This was the final meeting to be chaired by Dr. Suarez, who was honored at a Committee dinner on September 28. After welcoming attendees, he observed that August 21 marked the 20th anniversary of the signing of HIPAA, bringing many new charges to the National Committee.

Committee Updates

Mr. Landen announced that he recently presented to the National Plan Automation Group about NCVHS.

Dr. Phillips, the NCVHS liaison to the NCHS Board of Scientific Counselors (BSC), noted some of the major issues the BSC is facing. He noted the presence at this meeting of BSC’s Chair, Mark Flotow.

Dr. Suarez congratulated member Dr. Dave Ross and the Task Force for Global Health for receiving the Hilton Humanitarian Award this year.

Several issues briefly arose in this early discussion: Dr. Cohen flagged the issue of impending changes in race and ethnicity categories in the Census for possible NCVHS attention; Dr. O’Grady highlighted the Commission on Evidence-Based Policymaking; and Dr. Mays flagged the issue of declining data access as more data are pushed into secure data centers.

Updates from the Department

  • ASPE―Jim Scanlon

Mr. Scanlon announced that the Secretary has reappointed NCVHS members Stead, Goss, and Cornelius for second terms, and Mr. Soonthornsima has resigned from the Committee because of the demands of his new job. This leaves NCVHS with three vacancies. He then reviewed recent high-level personnel changes at HHS. He described the charge of the 15-member Commission on Evidence-Based Policymaking―to promote better use of administrative and survey data to support evaluation and policy-making. It is chaired by Katharine Abraham and Ron Haskins. Commission members have asked a series of questions, and Mr. Scanlon encouraged NCVHS members to weigh in. The Commission is to finish its work in about a year.

The Research Data Center consolidation is under way. The study of survey response rate issues continues, and the Data Council sponsored a workshop and issued an environmental scan on the subject. It has asked the Federal Committee on Statistical Methodology to form a working group on the measurement of response bias. The Data Council has also formed a working group with HHS agencies and Census to consider what guidance to provide agencies about improving consistency, quality, and accessibility in administrative data. Regarding the race and ethnicity initiative, OMB and Census are looking at possible changes for the next decennial census and, in the case of OMB, a possible revision to the policy standard. It will soon issue a request for comments. 

NCVHS members had questions and comments about legislative initiatives; considerations regarding new NCVHS appointments; survey response rate issues; and the Commission on Evidence-Based Policymaking (including opportunities to give input to and how HHS can prepare for their recommendations).

Ms. Goss expressed regret about Mr. Soonthornsima’s resignation and acknowledged his many contributions as a member and co-chair of the Subcommittee on Standards.  

  • CMS―Shana Olshan

Ms. Olshan focused on the update to the administration simplification pages of the CMS website, on which she gave a live demonstration. CMS has received positive feedback from the industry about the upgrade, which the Center will continue to work on. It has deployed a new tool, the Administration Simplification Enforcement and Testing Tool (ASETT), for use in submitting complaints about administration simplification standards or operating rules (but not HIPAA privacy and security rules, which should be submitted to OCR). CMS is actively reviewing the recent NCVHS recommendations on attachments. Acting Administrator Slavitt recently published a blog on the CMS website with an update on the Quality Payment Program (QPP), and Ms. Olshan summarized key points from that. Because of the diversity of physician practices, CMS will allow physicians to choose their pace of participation for the first performance period. She then reported on CMS’s work to reduce hospital admissions. Turning to the CMS activities on replacing the Social Security Number with a beneficiary identifier in health insurance claim numbers, she said this has received a lot of interest. Information on this initiative is available on the CMS website.

  • ONC―Elise Anthony, ONC

Ms. Anthony briefed the Committee on ONC’s Model Privacy Notice, NPM 2.0, which ONC is now working on. The purpose is to ensure that patients are aware of how their information is being used. ONC continues to work on public health areas, including Zika response. Earlier this week, it issued several releases to support the care continuum environment by supporting the information that providers need and their understanding of the potential uses of health IT to improve care. The releases include the Health IT Playbook and an EHR contract guide, each of which she described. The Health IT Playbook is searchable. The goal for the contract guide is to ensure that providers and other health IT purchasers understand exactly what health IT will do and how it will operate. It provides questions that potential purchasers should ask vendors and details about contracts and contract negotiation, though it is not legal advice; and it discusses safety, security, and system performance among other topics.

Asked about ICD-10 implementation, Ms. Olshan said CMS closely monitored all state Medicaid agencies for several months, and they are all doing well. She added that some providers have too-liberally interpreted Medicare’s discretionary approach to enforcing the use of ICD-10 in claims; there is flexibility only in specific areas, which she explained. CMS has addressed this in 10 new FAQs. Ms. Love commended CMS for the smooth transition and said NAHDO is “seeing the analytic impact.”  Ms. Olshan and Dr. Suarez talked about the National Committee’s interest in the expected impact of the replacement of the SSN.

Secretary’s Letter to Dr. Suarez―Mr. Scanlon

Mr. Scanlon acknowledged Dr. Suarez’s eight years of service on NCVHS, the last two as Chair. He read a letter from the Secretary conveying a Certificate of Appreciation to Dr. Suarez, who commented on the honor of serving on NCVHS and thanked his fellow members.

Mr. Scanlon then announced that the Secretary has appointed Dr. Bill Stead as the next NCVHS Chair. 

ACA Review Committee Report―Ms. Goss, Ms. Deutsch (slides)

Ms. Goss acknowledged Ms. Deutsch’s work in pulling together the extensive feedback from industry at the ACA Review Committee hearing in June. Ms. Deutsch then gave an overview of the Review Committee’s authorization, the June hearing, and the report on the hearing being presented for approval this day. She noted that NCVHS sent a letter to the Secretary in February 2016 summarizing the findings and recommendations. She then went through each section and entertained comments. She said the Review Committee (Subcommittee on Standards) received several useful suggestions from the industry that were incorporated in the latest version of the report. Dr. Suarez pointed out that drafts of the report have been circulated several times in the last several weeks. Dr. Mays expressed appreciation for the Subcommittee’s process in educating and involving Review Committee members who are not standards experts. Ms. Goss said that based on the experience this time around, they plan to create a Review Committee hearing playbook that can be followed every two years. Ms. Deutsch added that the report contains a good deal of valuable information that will be useful in preparing the 12th report to Congress on HIPAA. Dr. Suarez pointed out that the recommendations in the report are directed not just at the Secretary but also “at the full industry.” The Committee then unanimously passed a motion to approve the report.

Letter on Minimum Necessary―Ms. Kloss, Dr. Evans

Ms. Kloss presented a letter developed by the Subcommittee on Privacy, Confidentiality and Security on the basis of findings from a June hearing. OCR is eager for feedback on this topic. After giving an overview of the letter, she asked for comments and edits on each section and the recommendations. There were a few suggestions, and in general praise for the letter. Some subjects were flagged for future attention. The Committee then unanimously passed a motion to approve the letter.

As its next task, the Subcommittee will draft a letter on de-identification, based on the May 2016 hearing.

Developing Recommendations on Claims-based Databases―Ms. Love, Dr. Suarez (slides)

Dr. Suarez and Ms. Love reported on a June 2016 NCVHS hearing on all-payer claims databases (APCDs) and themes for recommendations that will be developed for a letter to the Secretary that will be presented at a subsequent NCVHS meeting. An ad hoc cross-section of NCVHS members self-organized to work on this topic. Dr. Suarez noted that Ms. Love’s membership in the All-Payer Claims Database Council does not pose an issue as she has operated in an open and impartial manner in this process.

The drafters of the letter reviewed the hearing testimony and extensive background material. Ms. Love described the current thinking about the letter. The hearing featured representatives of state APCDs, private sector initiatives, employers, and federal agencies. Like the health care environment as a whole, health care databases are changing rapidly, so this is a dynamic area. The hearing found that states are developing public data products for multiple uses; and private claims data initiatives, employers, and payers are developing data repositories. A significant overall theme of the hearing was the need for standardization and harmonization, particularly of data content. Ms. Love enumerated the challenges posed by information gaps (e.g., on substance abuse and worker’s comp) and need for federal collaboration, along with the changing health care environment and concerns about the sustainability of APCDs. Recommendations are being developed in the areas of standardization and interoperability, analytics and information needs, and future developments.

NCVHS members discussed a few terminology questions, and Dr. Stead suggested that the report include an educational appendix to define terms. They also discussed various potential uses of the data, such as through provision of a unified database, and the issue of sustainability.

Dr. Suarez described the thinking behind the evolving recommendations, which were developed by the ad hoc NCVHS working group on the basis of the hearing. The aim is to help improve the purpose, effectiveness, and standardization of APCDs and claims-based databases. There was brief discussion of aspects of emerging recommendations, and suggestions about both process and language. A major lens for the discussion was how this topic and set of concerns fits in the broader data ecosystem and the NCVHS effort to encourage convergence. The discussion resumed on day two.

Next Generation Vital Statistics―Ms. Goss, Dr. Cohen, Ms. Williamson, Mr. Atkinson (slides)

The purpose of this session is to prepare for a future NCVHS workshop on the quality of vital statistics data. The vital statistics system is a cooperative system in which data are shared by 50 states, two cities and five territories, brought together via the National Center for Health Statistics and the Cooperative Vital Health Statistics Program. While vital statistics data have critical uses for public health surveillance, their primary purposes are at the jurisdiction level. The data systems are complex and sometimes antiquated, and many people lay their hands on vital records. Dr. Cohen stressed the current opportunity to think generatively and constructively about what role the Federal government can play in improving the quality of data in this system. One possibility is to offer guidelines for building the next generation of state-based systems, with attention to how these systems interact with advances in technology and EHRs. The major areas of opportunity are content, transactions, and systems development. The quality issues around birth and death data will be the major focus.

Ms. Williamson has worked with Delton Atkinson to support the development of standards for vital registration. She outlined and commented on several questions for consideration in these areas. Major questions are what can be done to improve national adoption of standards and what can be done to incentivize providers to adopt them.

Mr. Atkinson gave an overview of the major initiatives being undertaken in vitals to improve the timeliness, quality, and usability of the data. The background document he prepared for this meeting lists 19 such initiatives. He explained the array of laws that apply to vitals, dating back to the early 1900s, and NCVHS efforts to work with states. One thrust of change needs to be changing some state laws. NCHS provides technical assistance, models, and guidelines, and writes some objectives into its contracts with states. He outlined the goals for improving vital statistics: a new vision for vitals that looks 10 years ahead; greater interoperability of vitals in health and medical systems; improving the quality of the work of medical examiners and coroners; improving the quality of vital statistics, including incentivizing medical providers to provide the correct information; and looking at the basic financing of the vital statistics infrastructure in the U.S.

Ms. Goss then led the Committee in a discussion of these topics, focusing on the need for a vision, interoperability, quality, and financing. Dr. Ross began by praising the excellent work of Mr. Atkinson, Ms. Williamson, and the team; and he expressed the hope that vitals could come to be viewed as “one of the core important national utilities.” A basic issue, he noted, is the nature of the financing. Dr. Cohen asked the group to consider what one or two things NCVHS could do to help move the conversation forward. This led to a wide ranging discussion, with members mentioning the following ideas:

  • Sustainability of the system and clarifying the value propositions for all stakeholders
  • Framing vitals as a national utility, including the implications for national security and financing
  • An educational effort
  • Linking this to the broader data ecosystem, including alignment with EHR standards
  • Creative leveraging of Medicaid dollars
  • Identifying the gold standard and source of information in each area
  • Exploring the perspectives of vendors and developers
  • Getting on the radar at the provider level, and leveraging existing support in that arena
  • Encouraging emerging experimentation among registrars
  • Separating the focuses on birth and death
  • Public access, linkage, and vision; and improving the National Violent Death Reporting System in collaboration with the Department of Justice
  • Attention to privacy issues
  • Leveraging state innovations
  • Facilitating the uses of data at each stage of life represented in vital statistics, and using the Quality Payment Program as the key lever to get death data used
  • The need for an overarching vision of vital statistics and their place in the data ecosystem

The group discussed Dr. Suarez’ suggestion that NCVHS comment on the Interoperability Standards Advisory published by ONC, recommending that the electronic standards already developed for e-birth and -death reporting be added to those being considered for adoption. Ms. Williamson will share previous NCHS comments on this matter with the Committee. (Discussion of this topic resumed on day two of the meeting, with an action.)

Dr. Cohen shared the early thinking about a possible NCVHS workshop on this topic in 2017. Dr. Ross, Dr. Rippen, Dr. Mays, and Ms. Love volunteered to serve on a working team with Ms. Goss and Dr. Cohen to plan next steps. Mr. Atkinson announced a series of visioning meetings with state representatives in December, as well as plans for a senior service fellow for vital statistics.

Public Comment: Dr. Mark Flotow, Past President of NAPHSIS and Chair of the NCHS BSC, expressed appreciation for the previous session and said he looked forward to the planned workshop.

Concurrent Subcommittee meetings

  • Subcommittee on Standards―Ms. Goss, Mr. Coussoule (slides)

After acknowledging the full Committee’s approval of the ACA Review Committee report, the Subcommittee focused on the following topics:

  • Review Committee 2017 hearing playbook
  • Predictability Roadmap
  • ACA 10109
  • 12th Report to Congress on HIPAA
  • Public health standards
  • Other topics (NCPDP, Medicare SSN replacement initiative, NPI, 7030 standard, unique device identifier, etc.)

After a brief overview of the expectations and mandates for this Subcommittee, they reviewed the Subcommittee’s broad scope of work and considered how to approach it. They agreed that the Subcommittee could set NCPDP aside for the time being, pending either a trigger mechanism or further conversations. They agreed on the need to lay out what needs to be done on a calendar after identifying what issues can be worked on concurrently and the principles for setting priorities. It was noted that some topics (notably, public health standards) belong at the full Committee level.

Ms. Goss proposed the 2017 Review Committee hearing, the predictability roadmap, ACA 10109, and the HIPAA report as the top priorities, and noted the need for an Executive Subcommittee discussion of strategies and available resources. Some Subcommittee members expressed a desire for a forward-looking approach to standards, under the purview of either the Review Committee or the Standards Subcommittee. That topic linked to interest in putting forward ideas for “HIPAA 3.0.” After a process discussion, members weighed in their top immediate priorities for the Subcommittee, with the following results, in this order:

  1. Predictability roadmap
  2. ACA 10109
  3. HIPAA report to Congress

Ms. Goss explained that the foregoing discussion of priorities and sequencing was meant to inform Subcommittee leadership about how to organize the work; the Subcommittee still has to fulfill its official mandates. As next steps, the co-chairs and Ms. Deutsch will synthesize this discussion into the Subcommittee’s planning spreadsheet. The group discussed the timing of the next Review Committee hearing and the possibility of moving it back to September 2017. Finally, they agreed to schedule standing biweekly phone meetings. Ms. Goss then adjourned this Subcommittee session. 

  • Subcommittee on Privacy, Confidentiality and Security―Ms. Kloss (slides)

The meeting began with a discussion of small changes, for purposes of clarity and style, to the letter on minimum necessary, which was already approved by the full Committee.

The Subcommittee then turned to early steps in the development of a letter and recommendations on de-identification, based on the May 2016 hearing. Ms. Kloss reminded members that they had agreed at the hearing to focus NCVHS recommendations on short-term actions HHS can take, while also identifying more complex and long-term issues. The tentative goal is to present a letter for approval at the November NCVHS meeting. The group discussed timing issues in view of both the complexity of the issue and the transition to a new administration; and Ms. Seeger reminded members that the HHS Office of Civil Rights asked for NCVHS recommendations “sooner rather than later.” They then reviewed a summary of the hearing. As a first step, Ms. Kloss said she would draft a letter to the Secretary; the Subcommittee will hold a call to discuss it in mid-October. Ms. Seeger called attention to a NIST publication on the topic, and noted that the goal for HHS is to put forth methodologies that are doable for everyone in the industry, regardless of size. Dr. Stead suggested putting forward some simple ideas regarding best practices and then “gently raising the floor” over time. 

Next, the Subcommittee looked at planning to focus on the “future of health information privacy.” Ms. Kloss said she and Ms. Goss have envisioned this as part of a Committee-wide exercise on the future of HIPAA, to take place sometime in 2017.  Dr. Suarez noted that the Subcommittee on Standards has talked about using the term “HIPAA 3.0.” Each Subcommittee would contribute in its area of expertise. In a brainstorming session, members raised these related topics:

  • The lack of a locus of responsibility for issues such as consumer involvement in HIE and diminishing response rates;
  • The growing inaccessibility of data as data are pushed into data centers; and
  • Privacy and mobile health technology, with a possible partnership with the FTC.

Dr. Stead proposed using the majority of the November full Committee meeting for strategic planning, an idea that others welcomed. Ms. Kloss then adjourned the Subcommittee session.

―DAY TWO―

Updates from the Department: Privacy and Security

  • OCR: Rachel Seeger, ASPE

Ms. Kloss and Dr. Suarez thanked Ms. Seeger for her significant contributions to NCVHS work in recent months. Ms. Seeger then described OCR’s recent enforcement activities, including settlements with Catholic Health Care Services, Oregon Health and Science University, the University of Mississippi Medical Center, Advocate, and Care New England Health System. OCR has initiated a small breach initiative to investigate the root causes of breaches affecting fewer than 500 persons. In the policy area, it just released a new FAQ explaining that business associates of HIPAA covered entities may not block access to the PHI it maintains for the covered entity. In July, it released a FAQ on unique device identifiers, developed with FDA. It also has been pushing out monthly newsletters on cybersecurity. It will soon issue guidances on cloud computing, text messaging, and social media and it continues its work on precision medicine and research authorizations. Finally, OCR is doing desk audits of selected covered entities, starting with a webinar.

Asked about the estimated scale of breaches in the U.S., she said it is considerable. NCVHS members talked with Ms. Seeger and Ms. Savage about how to increase the industry’s attention to and awareness of best practices; both urged NCVHS to make a statement to industry about best practices. Ms. Seeger indicated it also would be helpful for NCVHS to weigh in on the ANPRM on civil monetary penalties. The group discussed encryption, which has gotten much easier for institutions, and the importance of organization-level risk management.    

  • ONC Chief Privacy Officer Lucia Savage, JD (slides)

Building on the previous discussion, Ms. Savage reiterated the importance of each organization assessing its risks. She said the Health Care Cybersecurity Information Task Force has been blogging and soliciting input from organizations and individuals, which will be compiled and presented at its late-October meeting. OCR does not participate in the CISA Task Force so participants feel free to express themselves. The task force focuses on how to improve cyber threat sharing in health care. ONC and other agencies in July announced a funding opportunity to provide seed money for an information-sharing and analysis organization. It received some competitive applications, and will soon announce the award. In September, ONC released a new version of the security risk assessment tool, which is getting a lot of use. It has just launched its health IT playbook, with a special chapter on privacy and security. It highlights several interactive tools and provides a channel to a range of information. Other fact sheets in the pipeline include ones on disclosures in support of public health activities and on health care oversight. She added that ONC releases nothing without clearance from OCR; and sometimes, OCR decides to co-brand with ONC.

Regarding the report on non-covered entities, Ms. Savage said the report, issued in July, analyzes how privacy and security are regulated when HIPAA applies and when it does not. She referred people to HealthIT.gov for more information, calling attention to the comprehensive and informative footnotes. She added that current status of technology and the fact that consumers are now using technology make the report timely; and she offered to talk with the Committee further about this report, on request. Ms. Kloss said the Privacy Subcommittee would look into how to reinforce and help disseminate the report.

ONC plans for 2017 include a model privacy notice, next steps on API, and privacy/security issues related to alternative payment models.

Subcommittee on Population Health―Dr. Cohen and Dr. Stead

  • Digital Bridge―Andrew Wiesenthal, MD, Deloitte Consulting (slides)

Dr. Suarez introduced Dr. Wiesenthal, a former Kaiser Permanente physician-executive who led Kaiser’s EHR transition and trained clinicians. Dr. Wiesenthal stressed his affinity with public health, surveillance, and population health, adding that much of the work with CDC in recent years has been about how to promote electronic surveillance for public health purposes.

The Robert Wood Johnson Foundation supported development of the Digital Bridge, and a visioning session in June 2016 brought together high-level decision-makers in digital health care and public health communities to collaborate on a vision for digital health data exchange and a proof-of-concept for electronic case reporting to improve the health, well-being and security of the nation. The goal of the initiative is a bi-directional exchange of health information between public health and health care. The governance body, established in September, approved governance rules and established a Requirements working group. He outlined the timeline for the project through 2017, with milestones in communications, requirements, sustainability, law/policy/regulation, proof of concept execution, and other areas. Workgroups on requirements, technical solution, sustainability, and legal/policy/regulatory will each have sub-foci on care delivery networks, public health, and vendors. John Lumpkin, an RWJF Vice President and a former NCVHS Chair, is the first Governance Chair.

Dr. Cohen remarked on the potential interface between this initiative and the National Committee’s work on a vision for vital statistics. Dr. Wiesenthal agreed, and shared his group’s vision of a public-private partnership utility. He asked for input from NCVHS on the most pressing vital statistics use case that could be helped by this work. Members asked for further clarification of the Digital Bridge vision and where it fits with other initiatives. All agreed to have further conversations in the future to clarify and align these visions and initiatives.

  • September 27 Workshop―Drs. Cohen and Stead (slides)

Dr. Cohen announced that Dr. Phillips is replacing Dr. Stead as co-chair of the Subcommittee on Population Health as Dr. Stead transitions into the role as Committee chair. He expressed appreciation to Dr. Stead for their “wonderful partnership” over the past few years. Turning to the current Subcommittee initiative, Dr. Stead described the development of the Measurement Framework for Community Health and Well-being. The extensive vetting of Version 2 of the Framework generated more than 100 comments from individuals in a wide range of sectors. On the basis of that feedback, the Subcommittee developed Version 3, which it presented at a September 27 workshop titled “Using Sub-County Data to Promote Multi-Sector Approaches for Community Health and Well-being: Identifying Gaps and Opportunities.” The purposes of the workshop were to strengthen multi-sectoral efforts to improve health and well-being at the local level; to help HHS, other federal agencies, and private sector partners identify and close gaps in the available of sub-county data; to offer communities a blueprint of the key issue areas to stimulate and inform local multisector action; and to promote public-private collaboration, building on the successes of numerous metrics efforts already in development.

Dr. Cohen indicated that 90 thought leaders participated in the day-long workshop, from multiple federal agencies, health organizations, foundations, non-profit organizations, universities, and other entities. Their feedback was that the Framework of domains and subdomains is directionally correct, and they overwhelmingly affirmed its intent and substance. They also suggested a number of new indicators and recommended periodic review and update. Based on strong input from participants, the goal is for the Framework to accommodate two complementary objectives: first, serving as a parsimonious, multi-sectoral core set of sub-county-level indicators; and second, being flexible enough to encompass indicators that meet unique local needs.

During the proceedings, NCVHS members indicated that the Committee’s work on the Framework was wrapping up and the Committee is looking for an external group to turn over the Framework to carry it forward.  Soma Stout of the Institute for Healthcare Improvement and the 100 Million Healthier Lives initiative volunteered to facilitate a non-governmental convening group to create a transition process and work with a parallel Federal work group.

Three major next steps and recommendation themes surfaced from the workshop discussions:

  • Creating Version 4 of the Framework to incorporate recommendations from the workshop;
  • Recommending the formation of a federal work group to continue with these efforts; and
  • Creating a public-private partnership as described.

In discussion, Committee members commented on the following:

  • The need to make the process more inclusive and to reach out strategically to ensure broad inclusiveness, with all key organizations and perspectives at the table;
  • Fundamental issues and challenges around data availability and data gaps;
  • The importance of working for greater integration of clinical care and perspectives, with the emphasis on population-level social determinants; and
  • Encouragement to hand the Framework project off to the public-private stewards soon, in a condition that enables them to have input and develop a sense of ownership.

Mr. Scanlon urged the Committee to think carefully about the criteria for this project, and to manage expectations and stay within the bounds of what is appropriate for a Federal Advisory Committee. He also pointed out the importance of aligning with Public Health 3.0, and was assured that this is a priority and goal for the Subcommittee. 

Other Population Health Business

The Committee returned to its earlier discussion of vital statistics, with a focus on near-term action in advance of the broader visioning process they plan. They unanimously passed a motion to draft a letter as a comment for the ONC Interoperability Standards Advisory, recommending that already-approved standards for electronic birth and death reporting be included in certified EHR technology (but not as a requirement). Prior to approval of such a letter, Mr. Landen will consult with members of the vendor industry, and the NCHS BSC will be consulted.  

Dr. Cohen said the Subcommittee on Population Health will study how NCVHS can support and align its plans with Public Health 3.0. Dr. Phillips noted the possibilities for using population data to inform and direct clinical practice improvement, as encouraged by the CMS Quality Payment Program. The Subcommittee will explore this area, as well.

Work Group on HHS Data Access and Use―Dr. Mays, Dr. Rippen (slides)

Dr. Mays announced that Jim Sorace, MD, of ASPE has been appointed as lead staff person for the Work Group. As context regarding data access and use, she referenced President Obama’s 2009 memorandum on transparency and open government as well as the open data principles posted on Opengovdata.org and a list of the ideal features of open data platforms. The questions, she said, concern the right way to provide open data and the types of data and information. Also, there are questions about the bounds and priorities, and about where the greatest potential for impact is, given limitations in resources. She then shared findings from research in New York State by Erica Martin regarding anticipated benefits and challenges of posting government health data to open data platforms. These findings were used in developing recommendations for successful strategies for opening government health data (Martin & Begany 2015).

Dr. Mays introduced two products under development by the Work Group: a Data Access and Use Matrix, and a report, “Guidance on Increasing Use of and Access to HHS Health Data.” Dr. Rippen said the Matrix is intended to leverage the Data Framework developed previously by NCVHS. It focuses on the following data-related categories: publisher, description, currency/frequency, attributes, and usage/adoption. The Work Group has tested a prototype with data users at the California HealthCare Foundation, New York State, and elsewhere. She wondered if the National Library of Medicine might curate the Matrix and Data Framework. The next step, she said, is to get feedback from HHS data providers and NCVHS members. Dr. Mays said the Guidance document will outline the principles people should follow in such areas as usability, metadata, privacy and security, consumer engagement, and sustainability.     

Mr. Scanlon commented that there is no need for a one-size-fits-all kind of guidance; rather, there should be a sense of proportionality of the support, relative to potential value. Further, he cautioned against suggesting that using these tools is mandatory; rather, they are intended to be helpful, based on the best thinking of experts in the field. Dr. Sorace observed that many open data goals overlap with what HHS needs to do to run its own data systems.

Dr. Mays said the Work Group will develop use cases in order to target specific customers, and she asked the Committee to help it focus. Dr. Cohen and others suggested an initial focus on researchers as a target audience for the Matrix, and Mr. Scanlon suggested running the matrix by the HHS Data Leads group. There was considerable praise for both Work Group products. Dr. Stead hailed the fact that a way forward is emerging for the Data Framework; NCVHS can now “pass the baton to the data group” to help it evolve. Ms. Kloss suggested a visualization showing the continuum of data and the area within it where the Matrix is relevant, probably in the zone between “not fully open and not restricted.”

APCD Discussion, Continued―Dr. Suarez, Ms. Love

Returning to the previous day’s topic, Ms. Love, Dr. Suarez, and other NCVHS members commented on the evolving thinking and language for a future NCVHS letter on APCDs. Dr. Suarez commended Ms. Love for her leadership and efforts on this project, and for her fair and balanced approach. Dr. Stead noted the importance, in this context and in relation to the Digital Bridge, of paying attention to minimum-necessary principles.  

Final Comments―Dr. Suarez

The Committee revisited the NCVHS work plan template and enumerated the subjects on the agenda for the November full Committee meeting and beyond. Dr. Stead said the objective for the November meeting is to align the work across the subcommittees, to enable maximum progress with bandwidth and resource management. He asked for input to drive the strategic planning. Mr. Scanlon reminded the Committee to “keep your options open.” These topics were mentioned for the coming year:

  • Vision for vitals
  • QPP
  • Public Health 3.0
  • Briefing by the Commission on Evidence-Based Policymaking
  • APCDs
  • HIPAA report to Congress
  • Public health standards
  • HIPAA 3.0

In conclusion, Dr. Suarez wished the Committee the best and said it had been an honor to serve on NCVHS.

Public Comment

Dr. Flotow reported that the NCHS BSC has recommended that birth and death records should be part of EHRs. In addition, NAPHSIS has had detailed discussions about birth and death standards. He sees things coming into alignment that will make it possible to push things forward. 

Dr. Suarez then adjourned the meeting.


I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.

/s/
Chair

December 7, 2016
Date