Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

February 22-23, 2017

Hubert H. Humphrey Building, Washington, DC

MEETING MINUTES

The National Committee on Vital and Health Statistics was convened on February 22-23, 2017 at the Department of Health and Human Services’ Hubert H. Humphrey Building in Washington, DC. The meeting was open to the public. Present (by phone or in person):

Committee members

William W. Stead, MD, Chair
Bruce Cohen, PhD
Nicholas Coussoule
Llewellyn Cornelius, PhD (phone)
Alexandra Goss
Linda Kloss, RHIA, CAE, FAHIMA
Richard Landen, MPH, MBA
Denise Love
Vickie Mays, PhD. MSPH
Bob Phillips, MD
Helga Rippen, MD, PhD
David Ross, ScD

Absent:

Raj Chanderraj, MD
Barbara Evans, PhD, JD

Lead Staff and Liaisons

Rebecca Hines, MHS, NCHS, Exec. Secretary
Rashida Dorsey, PhD, ASPE, Exec. Staff Dir.
Lorraine Doo, CMS
Maya Bernstein, ASPE
Kate Brett, Ph.D., NCHS
Jim Sorace, MD, ASPE

Others (not including presenters)

Debbie Jackson, NCHS
Katherine Jones, NCHS
Marietta Squire, NCHS
Suzie Burke-Bebee, ASPE
Scott Shippy, CMS
Mildred Hunter, HHS (phone)
Madhu Annadata, CMS
Mark Flotow, NCHS BSC
Susan Baird Kanaan, consultant
Dan Rode, Dan Rode & Assoc/EHNAC
Erica Martin, NYU/Working Group
Leslie Francis, Working Group (phone)
Denise Buenning, CAQH CORE
Gail Kocher, BlueCross BlueShield Assn.
Michael DeCarlo, BlueCross BlueShield Assn.

ACTIONS

  1. The Committee passed a motion approving the report on the September 2016 workshop, “Measuring Health at the Community Level: Data Gaps and Opportunities,” subject to minor editorial changes.
  2. The Committee passed a motion approving a letter to the Secretary conveying recommendations on de-identification of protected health information under HIPAA.

―DAY ONE―

Call to Order and ASPE Welcome―Dr. Stead, Dr. Dorsey

Dr. Stead welcomed participants. After introductions around the room, on behalf of the Department Dr. Dorsey thanked NCVHS members for their service. She shared information on the new leaders in the Department, and announced the appointment of three new NCVHS members: Jacki Monson, JD, Debra Strickland, and Dr. Roland Thorpe.

CMS Update―Cora Tracy

Ms. Tracy directs the Program Management and National Standards Group in the CMS Office of Information Technology.  After describing a recent reorganization within that Office, she updated the Committee on the status of ICD-10. The merging of a “Road to 10” website with CMS.gov content will be completed in early April, streamlining access to resources. An updated HIPAA Enforcement website is in full production, to be called ASETT (Administration Simplification Enforcement and Testing Tool). CMS intends to be creative and innovative as it works with the new administration and continues its collaboration with NCVHS. One priority will be the convergence of clinical and administrative information, which she noted has long been an NCVHS priority.

During the discussion period, members had questions and comments about attachments, alternate payment models, the scope of the new merged group at CMS, and plans to measure the effectiveness of ICD-10 and PCS.

NCVHS 12th Report to Congress on HIPAA Implementation

The agenda for this meeting allowed considerable time to work on the draft NCVHS report to Congress. Describing the developmental process to date, Ms. Hines said the Executive Subcommittee had worked through a series of drafts with Ms. Kanaan, and CMS, ONC, and OCR submitted constructive and essentially favorable comments. In response to a request from Dr. Stead, NCVHS members worked their way through the draft, proposing and discussing ways to strengthen it. The goal is for the Full Committee to discuss and approve the report on its April 18 telephone meeting. The work on the report continued on day two of this meeting.

ONC Update―Jon White, MD, Acting National Coordinator for Health IT

Dr. White focused his update on ONC’s interoperability and precision medicine initiative efforts and the 21st Century Cures Act, which are guided by the Federal Health IT Strategic Plan (now in its third iteration). The shared Nationwide Interoperability Roadmap and its overarching goals are a major priority for ONC. The goals extend to 2024, with interim goals for 2017 and 2020. The long-term goal is the use of information systems to create a learning health system that improves as it goes along. ONC exercises “soft power” (non-regulatory guidance) through the Interoperability Standards Advisory, a coordinated catalog of standards and implementation specifications that is a public resource available for use by the health IT industry to meet specific clinical health information interoperability needs.

Other ONC activities include working on patient-matching, in which it is keenly interested; a strong focus on safety; significant programs doing outreach to providers; work toward consumer access to interoperable medication lists; and the Precision Medicine Initiative, a research program. ONC also has launched several pilots, including Sync for Science (S4S), S4S Privacy and Security, and Sync for Genes. Finally, Dr. White described the 21st Century Cures initiative, which has strong bipartisan support, and ONC’s work related to Title IV.

During the discussion period, NCVHS members talked with Dr. White about how NCVHS can support the 21st Century Cure Act work and other initiatives in which ONC is involved, as well as about future NCVHS projects such as the one on predictability. He promised to continue a robust dialog with NCVHS and to make specific requests in the future. Ms. Kloss hailed the fact that Dr. White has asked Deven McGraw to serve as ONC’s Acting Chief Privacy Officer.

Letter: Recommendations on De-identification of Protected Health Information under HIPAA―Ms. Kloss

Ms. Kloss and Ms. Bernstein presented a draft letter and recommendations on de-identification, prepared by the Subcommittee on Privacy, Confidentiality and Security based on findings from a May 2016 hearing. At her request, members offered comments and suggestions and reviewed each of the draft recommendations. In the course of the discussion, Dr. Stead articulated a discipline he hopes the Committee will generally adopt, of focusing recommendations that it regards as actionable in an 18 month-to-3-year period. The Subcommittee will present a revised version of the letter on day two, based on the comments received during this session.

Proposed Hearing on Health Plan ID Initiative―Mr. Coussoule and Ms. Goss

Mr. Coussoule said HHS has asked NCVHS to revisit the health plan identifier (HPID) requirements in the original HIPAA legislation and the ACA. Stakeholders have expressed concerns about the final rule published in September 2012.  NCVHS held a hearing on this in 2013 and sent a letter in May 2014, expressing the confusion in the industry about this matter. HHS recently asked NCVHS to hold another hearing to consider the potential value of a health plan identifier as well as challenges, issues, and opportunities with its implementation, and also to recommend what should happen next. Mr. Coussoule described the current thinking about the NCVHS process. Ms. Goss said a core question concerns the business case for a health plan ID. After some discussion, Dr. Stead said the current plan is to defer further work on this, pending further guidance from the new administration. Meanwhile, the Subcommittee on Standards is encouraged to develop a plan to respond to CMS for review by the Executive Subcommittee.

SSN Removal Initiative―Lois Serio, CMS (slides)

Ms. Serio is part of the CMS team working on the initiative to remove the Social Security Number (SSN) from the health insurance claim and Medicare card. The primary goal of the effort is to decrease Medicare beneficiary vulnerability to identity theft by removing the SSN-based Health Insurance Claim Number (HICN) from the Medicare card and replacing it with a new Medicare Beneficiary Identifier (MBI). The Medicare Access and CHIP Reauthorization Act (MACRA) of 2015 mandated this change, requiring CMS to mail out new Medicare cards with a new MBI by April 2019.

CMS has been working closely with partners and stakeholders on implementing this initiative. It involves complex systems changes for over 75 systems, and will generate new MBIs for all beneficiaries; will issue new, redesigned Medicare cards; and will modify systems and business processes. Ms. Serio described the new cards, the new MBI, and the implementation process for the SSN replacement initiative, including plans for outreach and education to beneficiaries and their agents as well as to health plans, the provider community, states and territories, and vendors. The transition period will begin in April 2018 (when CMS will start mailing out new cards) and run through December 2019. All systems and providers will be able to accept either the HICN or the MBI, or both, during this period; after that, only the MBI will be accepted. She explained that “the SSN will not be going away,” so it can still be used for longitudinal statistical tracking.

In discussion with Ms. Serio, NCVHS members had questions and comments about coordination with the States, outreach and education, the nature of the random number used in the MBI, how to assure continuity in SSN-based data, the availability of crosswalks for researchers and others, and the importance of end-to-end testing with internal partners and providers. Dr. Stead asked Ms. Serio to convey to her CMS team the Committee’s urging that their testing scenarios involve the kind of end-to-end testing done with ICD-10, if not more. NCVHS also asked for feedback on the test plan, on whether there is a check-digit concept built into the MBI, and on the idea of providing a carefully-managed crosswalk to avoid downstream problems for researchers. She said she would do so and would meet with the Committee again to provide answers.

NCVHS Measurement Framework for Community Health and Well-being―Dr. Cohen

In this segment of the meeting, Dr. Cohen presented the report on the September 2016 Workshop on measuring health at the community level. He also described the development and characteristics of the NCVHS Measurement Framework for Community Health and Well-being which was the centerpiece of the workshop. (The Framework is an appendix to the workshop report.)

Major themes of the workshop included community-level data and measurement issues, appropriate roles for the Federal government in enhancing community-level data, and ways to advance the work on the Measurement Framework. The ideas that emerged for consideration for recommendations to the Secretary included creating an intra-departmental focus on community-level data within HHS and an inter-Departmental focus across Federal agencies.  The culminating idea is to connect the Federal data enterprise to non-federal data activities that are actively supporting communities, and turning the Framework over to a nongovernmental group that will steward its further development and use. A letter is now being developed containing NCVHS recommendations to the Secretary based on the workshop findings. In addition to the workshop report, the Framework, and the impending letter and recommendations to the Secretary, this phase of NCVHS work on community-level data (led by the Subcommittee on Population Health) also generated an environmental scan conducted by Dr. Gib Parrish.  

Dr. Cohen asked for comments on the draft report, and several relatively small edits were offered. The Committee then passed a motion to approve the report, subject to these editorial changes.  

Dr. Cohen then introduced Soma Stout, MD, Executive Lead for the 100 Million Healthier Lives Initiative of the Institute for Healthcare Improvement. At the September 2016 NCVHS workshop, Dr. Stout offered to convene a non-governmental stewardship group under the auspices of her organization to carry on the development and dissemination of the Community Health and Well-being Measurement Framework. Dr. Stout named a large number of leaders from a wide range of health organizations who have since “rallied to the cause” to form the non-federal side of an envisioned federal/non-federal partnership on community-level measurement. A meeting of interested parties is tentatively planned for April, and there are thoughts of creating a community forum on a peer-to-peer platform. In closing, she asked NCVHS for guidance on outreach within the Federal space.

In the discussion period, Ms. Hines offered the use of the NCVHS population health listserv for outreach. There was a brief discussion of what to name the stewardship group, moving forward, and agreement to continue the conversation about that. Dr. Stead clarified that as a FACA, NCVHS will not “co-sponsor” the activities around the Measurement Framework going forward, although some members may participate in future convening activities as individuals. NCVHS will, however, do what it can to have the Federal perspective appropriately linked in.

Commission on Evidence-Based Policymaking ―Lucas Hitt, Deputy Executive Director (slides)

The Commission was created through bipartisan legislation on March 30, 2016, as the result of discussions between Congress and the Executive Branch about opportunities to improve how the government uses the evidence from survey and administrative data to inform policymaking and evaluation. The 15 bipartisan Commissioners are researchers, administrators, and privacy experts appointed (three each) by the President, the Speaker of the House, the House Minority Leader, the Senate Majority Leader, and the Senate Minority Leader.

The Commission started meeting in July 2016 and is scheduled to complete its final report by September 2017 and end its work the same month. In the interim, it is holding public meetings, hearings, and deliberations and doing research. It is also holding town-hall-style public hearings around the U.S. The Commission’s key areas of focus are data and infrastructure, incorporation of evaluation in program design, integration of survey and administrative data, and models for a possible Federal data facility. Privacy is a major cross-cutting focus: Five seats are reserved for privacy experts, giving that community “a very influential voice in the Commission’s recommendations.” The data community and the needs of the evaluation community are also important themes and areas of focus; and the Commission is looking at what states are doing and at models from other countries. The international models share several characteristics, including centralized but shared governance; privacy principles incorporating the “five safes” (safe people, project, setting, data, and outputs), distributed access, and cost recovery.

The Commission issued a request for comments and received about 450 comments; and it surveyed federal agencies. It has an “open window” for submission of written material from Federal agencies and FACA committees, and he extended that offer to NCVHS. Staff are working toward producing MO’s around each bundle of working recommendations emerging from the Commission’s research, and scheduling deliberation meetings on each of them.

As a transition to a discussion period, Dr. Cohen presented an overview of and background on the NCVHS Measurement Framework on Community Health and Well-being, and Ms. Kloss did the same for the NCVHS stewardship Toolkit for Communities Using Health Data. Mr. Hitt said he would enter these into the record. He expressed interest in examples of local use of the Measurement Framework, and Dr. Ross described the experiences in DeKalb County, GA.

NCVHS members then talked further with Mr. Hitt, starting with a general query from Dr. Stead about how NCVHS might be helpful to the Commission. They discussed the need for sub-county data to stimulate community engagement and inform decision-making at that level. Members emphasized the critical role of the Federal government in enabling local data use, and the potential benefits for Federal policy from the availability of useful community-level data. They explained that communities are interested in aggregate data, not individual-level data, although stewardship mechanisms are still needed. The group also discussed the widespread need in states and communities for technical and analytic assistance, and how that need might be met. There is also a need for information on best practices and more research on methods, both areas where the Federal government could help. In closing, Dr. Stead noted that Mr. Hitt had obviously engaged the Committee’s interest, and they agreed that there would be further exchanges and follow up.  

―DAY TWO―

Healthdata.gov Report/Update on Progress and Recommendations ―Dr. Mays, Erica Martin

Dr. Mays acknowledged the work of the Work Group on HHS Data Access and Use on the draft report/letter being presented today, and particularly its principal author, Work Group member Dr. Erica Martin. Dr. Dorsey expressed the Department’s thanks to the Work Group for its efforts to recommend ways to strengthen Healthdata.gov, a key means of access to HHS data. 

Dr. Mays said the Work Group’s intended products are a report and a letter to the Secretary. The day’s discussions, she said, would focus on the recommendations they contain. Dr. Rippen commented on the value issues around data related to the return on investment and the public good, which the Work Group thinks it is important to emphasize along with the importance of data stewardship. Dr. Mays shared comments from Work Group member Mark Savage on the potential utility of HealthData.gov for community learning health systems.

Members offered a variety of suggestions about framing, emphasis, specific ways to improve HealthData.gov, and other aspects of the letter/report. Dr. Stead reiterated an earlier point about the importance of framing all NCVHS recommendations at an actionable “ground level” and distinguishing such recommendations from more far-reaching NCVHS visions.

Dr. Martin then reviewed the five draft recommendations in the letter/report and the reasoning behind them. The current document builds on a 2014 NCVHS letter to the Secretary on the usability, use, and usefulness of HHS data. Members offered comments on each of the draft recommendations. The document(s) will be revised, based on the foregoing discussion, for review by the Committee on its April 18 virtual meeting.

Letter to the Secretary on De-identification―Ms. Kloss

Ms. Kloss outlined the changes made to the letter on de-identification of protected health information under HIPAA that were made by the Subcommittee on Privacy, Confidentiality and Security in response to discussions on the previous day. After discussion and a few further changes, the Committee approved the letter as revised.

Report to Congress

Led by Dr. Stead, the Committee returned to its detailed review and revision of the draft 12th Report to Congress on HIPAA Implementation. Subsequent drafts will be processed by email after this meeting. The goal is to approve a final version of the report during the NCVHS virtual meeting on April 18.

Predictability Roadmap―Ms. Goss, Ms. Doo (slides)

To lay the groundwork for the planned Predictability Roadmap project, Ms. Goss and Ms. Doo briefed the Committee on the major players in the HIPAA industry and what each does in the areas of standards development and code set maintenance, to help explain why a predictability roadmap is needed. They explained that the Administrative Procedure Act (APA), which establishes requirements that affect the adoption of standards, code sets, and operating rules, has a lot to do with the predictability roadmap because of its requirements related to interim rules and proposed rules. A major question is what opportunities exist under the APA to expedite rule-making.

The Subcommittee on Standards has narrowed the scope of this effort to X12, the National Council for Prescription Drug Programs (NCPDP), and operating rule standards. Ms. Goss asked Committee members to comment, and they raised the following topics:

  • The importance of timing and sequencing in standards adoption;
  • The importance of aligning administrative and clinical data needs with respect to standards; and
  • The general framing and scoping of this project, and the possibility of widening the scope in subsequent stages.

Regarding scoping, members suggested calling the initial stage the “predictability roadmap for administrative standards and operating rules.”

Ms. Goss then described the workplan for the Predictability Roadmap project. In 2017-18, NCVHS will assess a more efficient development and testing, adoption, implementation, and evaluation of HIPAA transactions and operating rules. Based on a review of opportunities for efficiency in the overall process and by the organizations responsible for given steps, NCVHS will develop recommendations to HHS aimed at achieving greater predictability in updating HIPAA transaction implementation specifications and operating rules.  

NCVHS plans to identify a baseline of existing processes in applicable organizations including Standards Development Organizations (SDOs), the Operating Rule Authoring Entity (ORAE), the Designated Standards Maintenance Organization (DSMO), WEDI, and HHS/CMS. It plans to then identify enhancements from key industry stakeholders and Federal partners. After publicizing the enhancement options identified through stakeholder collaboration, NCVHS will hold a hearing to receive testimony on these options. On that basis, it will develop recommendations, to be conveyed in a letter from NCVHS to the HHS Secretary proposing a predictability roadmap. The predictability roadmap is intended to provide the healthcare industry with a degree of certainty in the timing of the development, adoption, or implementation of new or revised standards or operating rules as required under HIPAA.

Planning for April 2017 Full Committee Meeting

Because it has been advised not to have four in-person meetings a year due to budget issues, NCVHS will hold its first virtual meeting on April 18. Members discussed the objectives and logistics for that meeting, to achieve the goals of maximum effectiveness, efficiency, and engagement. Three work products will be on the agenda for approval: the Report to Congress, a letter and report to the Secretary on HealthData.gov, and a letter to the Secretary on community health data. Ms. Hines was asked to find out how other advisory committees handle their virtual meetings―particularly those of ONC; Mr. Landen said the technology it uses is tested and proven.

Next Generation Vital Statistics―Dr. Cohen

Dr. Cohen shared a draft prospectus describing the challenges and opportunities related to vital statistics, and the plans to hold a one-and-a-half to two-day workshop on the topic in September 2017. The purpose of the workshop is to gather information about the current state of our nation’s approach to vital statistics; identify the roles these data play for Federal, state, local, and nongovernmental entities; and analyze the deficiencies in the current approach and recommended solutions available to protect and improve the system. The potential products include a hearing summary report on the current state, the need, concerns, and future direction and a letter to Secretary with recommendations. The possibility also exists of future white papers on specific topics that emerge and require further explication.

In response to his request, NCVHS members commented on the project and offered suggestions about the prospectus and the plans for the workshop. The major topics are shaping up to be 1) a level-setting/current status; 2) pain points, known opportunities, needs, and barriers – looking separately at Federal, state, and local issues; and 3) possible solutions and emerging best practices. A block of time at the end of the workshop will be reserved for the Committee to process main themes surfaced during the hearing. Recent Privacy and APCD hearings were cited as good models.

The planners were encouraged to look at models outside of health care and vital statistics that have generated relevant solutions―for example, college transcripts and the highway trust fund. (This was framed as a homework assignment.) They affirmed that the intention is to focus on opportunities to fix the entire system rather than components of it. 

Strategic Discussion, Workplan, and Next Steps―Dr. Stead, Ms. Kloss

The Committee then turned to its work plan for 2018 and the topics it hopes to work on in addition to guidance the incoming administration may bring to the Committee. The major projects are “Beyond HIPAA” and a project to revisit health terminology and vocabulary. Ms. Kloss outlined the thinking and led discussions on each one.

Beyond HIPAA

Regarding Beyond HIPAA, Ms. Kloss referred members to a framing document previously distributed and explained that the project will primarily focus, at a high level, on privacy and the space outside and beyond the boundaries of HIPAA.  A desired outcome of the project is policy guidance, including a framework of principles, and possibly identification of policy levers to augment existing ones. As an example, Ms. Kloss cited the principles in the 2012 NCVHS letter to the Secretary on a framework for community use of health data.

The group discussed the broad scope of these issues and ways to simplify and contain the topic. One possibility, from Dr. Stead, was to identify separate tracks on privacy/security issues and the next generation of standards. He also suggested starting to address it with a panel at the June or September full Committee meeting, to “bring external voices into our internal planning.” (Dr. Mays suggested Wendy Nilsen of the National Science Foundation, a Work Group member.) 

Further on scoping issues, Dr. Cohen suggested considering what data access and exchange will look like in 20 years. Ms. Love noted that in addition to CIOs, the work of the people doing data policy on the front lines of state and Federal levels is relevant. Regarding the time-frame, Dr. Stead suggested taking a long-term vision and also crafting near-term recommendations. The group noted themes and objectives that have become prominent in recent years, including the movement of data and wellness, as part of the context for this effort. As one overarching outcome, Ms. Kloss envisioned a 21st century diagram to guide the Committee’s work and help it set priorities. As a next step, she proposed doing a refined description of the project for review at the June meeting.

Terminology, Classifications, and Vocabulary

In this project, Ms. Kloss said, the plan is to step back and look broadly at the national approach and capability to update and disseminate code sets and classifications, taking advantage of technology and better meeting the need for timely updates. Dr. Stead added that the question is whether it is possible to modernize the approach and develop a relatively continuous process for updating vocabulary and terminology, to match the rate and pace of changes and updates. Ms. Kloss said that in preparation, NCVHS needs to learn about ICD-10 PCS, ICD-11, and possibly Rx Norm. The National Library of Medicine will be asked to meet with NCVHS at its June meeting.

A propos of other topics, Ms. Doo commended the Health IT Playbook to the Committee’s attention.

Ms. Kloss asked for, and was given, the Committee’s concurrence to talk to OCR about the need for current guidance on accounting for disclosures. She will bring back OCR’s answer and the Committee will then consider whether to go forward on that topic.

Immediate Next Steps

Dr. Stead enumerated the following next steps:

  1. Finalize and submit the de-identification letter to the HHS Secretary.
  2. Complete the edits to the Report to Congress in time for the April 18 call.
  3. Continue the work on the HPID hearing plan.
  4. Incorporate final edits to the HealthData.gov letter and report.
  5. Finalize the letter outlining recommendations on community health measurement.
  6. Explore possibility of posting the NCVHS Health Data Framework on the NCVHS website as a white paper making it accessible to the Commission on Evidence-based Policymaking as well as to the community-at-large for possible further work.
  7. Rework the Beyond HIPAA project description.
  8. Rework the classification and vocabulary description and design the panel for the June meeting of the full committee.
  9. Follow up on the claims-based databases/APCD Hearing follow-up by organizing a call among Ms. Hines, Dr. Phillips, and Ms. Love to develop a process and timeline.

Public Comment

Mark Flotow, Ph.D., a member of the NCHS Board of Scientific Counselors (BSC), congratulated the Committee on a very productive meeting. The BSC is scheduled to meet next in May. Speaking from his experience as Chief of the Illinois Center for Health Statistics, he commented on community health data issues and stressed communities’ need for expert assistance to help them interpret and use data effectively. He shared his concerns about the sustainability of this enterprise, given the decline in state-level resources for this purpose. 

Mr. Landen then conveyed an email comment received from Dr. Joe Bormel regarding the NCVHS predictability roadmap project. Dr. Bormel (as paraphrased by Mr. Landen) challenges NCVHS to avoid “two-dimensional thinking as we approach the predictability roadmap.” He points out that many processes are in place that affect the U.S. health care system, in governmental, international, ISO, and private sectors. In particular, he calls attention to the National Quality Strategy.

Dr. Stead 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

June 21, 2017