Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

February 20-21, 2014

Hubert H. Humphrey Building, Washington DC

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on February 20-21, 2014 at the Hubert H. Humphrey Building in Washington, DC. The meeting was open to the public.

Present:

Committee members

  • Larry A. Green, M.D., Chair
  • Lynn A. Blewett, Ph.D.
  • John J. Burke, MBA, MSPharm.
  • Bruce Cohen, Ph.D.
  • Llewellyn Cornelius, Ph.D.
  • Leslie Pickering Francis, J.D., Ph.D.
  • Alexandra Goss
  • Linda L. Kloss, M.A., RHIA (phone)
  • Vickie Mays, Ph.D., MSPH
  • Sallie Milam, J.D., CIPP, CIPP/G
  • William J. Scanlon, Ph.D.
  • W. Ob Soonthornsima
  • William W. Stead, M.D.
  • Walter Suarez, M.D., MPH
  • Paul Tang, M.D.
  • James Walker, MD, FACP

Absent:

  • Raj Chanderraj, MD, FACC
  • Len Nichols, Ph.D.

Lead Staff and Liaisons

  • Debbie Jackson, NCHS, Interim Exec. Secretary
  • James Scanlon, ASPE, Exec. Staff Director
  • Justine M. Carr, M.D., Data Working Group Chair
  • Judy Murphy, R.N., ONC

Others (not including presenters)

  • Chris Fulcher, Ph.D. (Working Group)
  • Leah Vaughan, M.D. (Working Group)
  • Susan Queen, ASPE
  • Lily Bradley, ASPE
  • Rob Tagalicod, CMS
  • Gail Horlick, CDC
  • Katherine Jones
  • Marietta Squire
  • Bill Alfano, BCBSA
  • Janet Hamilton, FL Department of Health
  • Charles Ishikawa, ISDS
  • John Stamm, EPIC
  • Jeff Benning, Cab Interop. Collaborative
  • Sean O’Connor, Genesis Systems, Inc.
  • KD Doal, MD, 07 Systems/HL7
  • John Roberts, TN Department of Health
  • James Daniel, ONC
  • Kelley Turek, AHIP
  • Susan Baird Kanaan

Note: The transcript of this meeting and speakers’ slides are posted on the NCVHS Web site, http://ncvhs.hhs.gov. Use the meeting date to locate them. For final versions of NCVHS documents discussed in the meeting, see “Reports and Recommendations.”

EXECUTIVE SUMMARY

ACTIONS

  1. The Committee unanimously passed a motion approving the work plans presented by the Subcommittees on Privacy/Security and Population Health.
  2. The Committee passed a motion (with one abstention) defining the following process for approving a letter to the Secretary drafted by the Data Access Working Group and discussed during this meeting: Distribute the revised version to all Committee members via Dr. Green, with a deadline for responding, and post it on the NCVHS website at the same time. The Executive Subcommittee will make a final decision about the letter based on the nature of the comments.

Updates from the Department

  • ASPE – Jim Scanlon

After announcing that the Secretary had renewed the NCVHS charter through 2016, Mr. Scanlon reported on HHS personnel news, planning and data policy activities, and new projects. The personnel news: Charlie Rothwell has been named NCHS director, Dr. Karen deSalvo is the new ONC director, Rick Kronick is the new AHRQ director, and Richard Frank has been nominated for ASPE (requiring Senate confirmation).

Discussion with the Committee focused on population health management as a promising frame and stimulus for the convergence of clinical and public health efforts. An HHS study on chronic disease management is looking at both provider and public health information systems. Mr. Scanlon welcomed NCVHS input in this area, noting the centrality of data policy issues. Dr. Green stressed that the Committee is “keenly interested” in this topic.

  • CMS – Denise Buenning (slides)

Ms. Buenning reported on the status of meaningful use and EHR incentives, operating rules, the health plan identifier, other administrative simplification initiatives, and ICD-10 implementation and testing. On ICD-10, she stressed that the October 1, 2014 deadline will not change, and that technical assistance and support will continue after the deadline.

  • ONC – Judy Murphy (slides)

Ms. Murphy briefed the group on 11 topics including EHR adoption statistics, Stages 2 and 3 of Meaningful Use, SAFER guides, and anti-kickback. EHR adoption is tracked in the dashboard and maps on healthIT.gov. She gave the latest on the Blue Button, which five large pharmacy networks are now using in addition to VA, DoD and CMS to provide information to patients. An early version of the Blue Button Connector will be launched at the end of February.

  • ONC Privacy and Security Update – Helen Caton-Peters (slides)

Ms. Caton-Peters briefed the group on policy and projects of the Office of the ONC Chief Privacy Officer. The policy areas include accounting for disclosures, critical infrastructure cybersecurity, and the White House Big Data Initiative; the projects are on data segmentation, models of notice of privacy practices, and a security risk assessment tool. The White House in January 2014 launched an initiative and comprehensive review on big data and the future of privacy. The result will be a report to the President that will serve as the foundation for an action plan. HL7 and IHE have approved a “normative” standard for data segmentation for privacy.

  • OCR Update and Outreach Rachel Seeger (slides)

Ms. Seeger reported on OCR’s recent work and plans in the areas of rulemaking, guidance, enforcement, and public outreach. She announced the final rule on CLIA. A Spanish model Notices of Privacy Practices has been released; other guidances in the queue include one on mental health disclosures. She described two enforcement actions and said the key message for providers and health plans is the necessity of having policies and procedures in place for a breach.

There was considerable Committee discussion of data segmentation, and Ms. Jackson was asked to put the topic on a future NCVHS agenda.

Letter from Working Group on Data Access and Use – Dr. Carr (slides)

After 18 months of work, the Working Group has drafted a letter to the Secretary summarizing its major observations and findings to date. It focuses on three areas of desired improvement: timeliness, granularity, and metadata. Dr. Carr said the letter reflects a work in progress that evolves with every meeting and conference call; and the work is likely to lead to additional letters. The starting point for the letter is the question of whether the 998 data sets that HHS has liberated are delivering “the bang for the buck,” and if not, why not.

NCVHS members engaged in a wide-ranging discussion of the letter, covering its general purpose and scope, the optimal ways of assessing and meeting communities’ data needs, and aspects of each proposed topic. Dr. Carr noted the benefits of being able to talk through the Working Group’s work and findings in the full Committee meeting, and of hearing the perspectives of diverse HHS staff thanks to the convenient meeting location.

On day two, she presented a revised version of the letter, prompting further discussion and editorial suggestions. Ultimately, the Committee passed a motion (with one abstention) defining the following process for approving the letter following further revision and inputs by the Working Group: Distribute the revised version to all Committee members via Dr. Green, with a deadline for responding, and post it on the NCVHS website at the same time. The Executive Subcommittee will make a final decision about the letter based on the nature of the comments. Dr. Green asked Ms. Jackson and Dr. Carr to work out a process map for handling Working Group products in the future, for review by the Executive Subcommittee. Mr. Scanlon urged the Committee to find a more efficient process for reviewing Working Group products in the future.

Standards Update – Dr. Suarez and Mr. Soonthornsima (slides)

This status report covered the Subcommittee’s work plan, the HIPAA report to Congress, the November 2013 hearing on public health data standards, and the February 19 hearing on HIPAA and ACA administrative simplification. The NCVHS public health data standards hearing examined the current state of standards being used in public health exchanges and the incentives and issues around standards. Dr. Suarez summarized the themes heard in the meeting and the possible recommendations they give rise to, noting that the recommendations should be developed by the full Committee because of the joint sponsorship of the hearing. Mr. Soonthornsima then shared highlights from the previous day’s hearing, which covered the major topics of operating rules, EFT and ERA, ICD-10, HPID, and a DSMO request regarding pharmacy benefits.

Members then reconvened in a series of subcommittee “blocks” (in the context of the full Committee meeting), the third of which began the second day of this meeting.

Subcommittee on Privacy, Confidentiality and Security Block (slides)

Ms. Bernstein gave a brief overview of the contents of the Subcommittee’s portion of the HIPAA report. Dr. Francis then introduced Maureen Henry to report on an environmental scan and preliminary analysis of community health data stewardship topics she is conducting for NCVHS. The Subcommittee intends to develop dynamic guidance resources compiling best practices in the area of community data stewardship. Ms. Henry also found that while the Subcommittee is interested in collecting case studies of best practices, the scan showed that they are in short supply. A major thread of the discussion with the Committee concerned what privacy-related resource(s) would be most useful to communities. After discussion, Ms. Kloss observed that a workshop or hearing may not be in order, and that the next step may be to do the definitional work and begin to define and design a possible “recipe book.” Dr. Green urged the Subcommittee to include in its context data that are “far outside of HHS’s jurisdiction.”

Discussion focused on what kind of product or resource might be most useful to community members to help them understand and minimize risk. In general, the question of the most effective ways of reaching out to and supporting communities was a major and recurring theme of the entire NCVHS meeting, along with the related theme of what agencies and organizations to collaborate with.

Subcommittee on Population Health Block – Drs. Cohen and Stead

This session was dedicated to a review and discussion of the proposed Subcommittee work plan for 2014 and beyond, referencing planning documents that had been shared with NCVHS members. Dr. Cohen noted that the theme of granularity is a crosscutting topic of interest. Dr. Stead gave an overview of the Framework Project, in which members of all subcommittees will participate, facilitated by the Population Health Subcommittee. He noted the direct relevance of the framework to the granularity, timeliness and metadata issues raised earlier in the day by the Working Group. The Subcommittee plans to hold a Spring workshop at which participants will develop the framework further, using additional use cases. Following that workshop, the Subcommittee will hold a two-day roundtable on these topics in the Fall, aimed at development of a report and recommendations to the Secretary.

The group discussed the challenge and importance of parsing apart responsibility and leadership for the closely related tasks in the overall NCVHS work plan. Also, there are choices to be made, given the limits of available resources. Dr. Green asked Ms. Jackson to prepare an agenda for an Executive Subcommittee meeting, to be held soon to address these questions.

In response to an invitation from Dr. Green, Mr. Burke made a motion to approve the work plans presented in the foregoing Subcommittee blocks. The motion passed unanimously.

Subcommittee on Standards Block – Dr. Suarez and Mr. Soonthornsima (slides)

The agenda topics for this final subcommittee block included the HIPAA report, public health data standards, and the February 19 hearing on administrative simplification. (Also see notes on the Subcommittee briefing, above.) Dr. Suarez summarized the major themes of the recent hearing on HIPAA and ACA administrative simplification, which will be reflected in a letter the Subcommittee is drafting. Several members endorsed Dr. Cohen’s suggestion to develop a separate letter and recommendations, with a quick turnaround time, on the time-sensitive subject of ICD-10.

Supporting Communities as Learning Systems: Report to the Data Council – Dr. Cohen (slides)

Dr. Cohen reported on his January 8 presentation and discussion with the HHS Data Council, which focused on NCVHS work on supporting communities as learning systems for health. The notion of communities as a learning system resonated with Data Council members, along with the topic of granularity. The fact that none of them had any idea of the breadth and depth of the Committee’s work points to the need to do more outreach with HHS agencies connected to NCVHS work. An action step for NCVHS is to find ways to communicate and collaborate more closely with the Data Council. Mr. Scanlon said the Data Council is interested in “moving forward in a sophisticated and nuanced way” toward some joint activities Dr. Jon White reiterated the point about getting staff time for HHS staff to work with NCVHS, and suggested reaching out to the leaders at SAMHA, HRSA and AHRQ to ensure that they understand the importance of doing so.

Healthy People 2020: Social Determinants of Health – Carter Blakely, ODPHP (slides)

Healthy People is a national agenda for disease prevention and health promotion with measurable objectives (1,200 at present) and targets to be achieved by 2020, developed through a stakeholder-driven process, managed by an interagency steering committee, and based in the HHS Office of the Assistant Secretary for Health. This is the fourth set of decade-long objectives and the first, because it is now released online, that can be updated annually. The advisory Committee asked for a focus on the social determinants of health (SDOH). Besides elevating the presence of SDOH in Healthy People 2020, ODPHP developed leading health indicators in consultation with the Institute of Medicine, one of which is specific to SDOH. It also created a topic area for SDOH, using a place-based approach and prioritizing five domains of determinants: neighborhood/built environment, education, economic stability, health and health care, and social and community context. Ms. Blakeley gave examples of indicators in each domain, and said they are working toward having objectives in each area. Next steps include developing additional objectives and developing the website, healthypeople.gov, to include an SDOH portal, and continuing the conceptual and theoretical work on what SDOH means and how to put it into practice.

Dr. Green remarked that “the overlap is virtually complete” between many points made about Healthy People and the National Committee’s work on communities as learning systems, including a shared effort to figure out how to use data at the community/local level.

Strategic Discussion, NCVHS Involvement, and Other Business

After reviewing upcoming meetings in which NCVHS may be involved, the group discussed plans for an Executive Subcommittee conference call in the near future to coordinate all the ambitious plans. There also will be a virtual meeting of the full Committee sometime before the June meeting.

Dr. Green asked Ms. Jackson and Dr. Carr to work out a process map for handling products from the Working Group in the future, for review by the Executive Subcommittee. He then announced that Dr. Tang, whose term as an NCVHS member is expiring, has agreed to join the Working Group.

Dr. Carr announced that she is stepping down as Working Group Chair in June, to be succeeded by Dr. Mays. Mr. Scanlon expressed gratitude on behalf of the Department to Dr. Carr, Dr. Tang, and Dr. Scanlon for their long and exceptional service. Dr. Green welcomed Dr. Blewett as an active NCVHS member.

DETAILED SUMMARY

– Day One –

Dr. Green welcomed attendees. Following introductions, he noted that this meeting would feature the first-ever presentation and review of a letter to the Secretary drafted by the Working Group on HHS Data Access and Use, which is under the NCVHS umbrella.

Updates from the Department

  • ASPE – Jim Scanlon

After announcing that the Secretary had renewed the NCVHS charter through 2016, Mr. Scanlon reported on HHS personnel news, planning and data policy activities, and new projects. On the personnel front, Charlie Rothwell has been named NCHS director, Dr. Karen deSalvo is the new ONC director, Rick Kronick is the new AHRQ director, and Richard Frank has been nominated for ASPE (requiring Senate confirmation). The Secretary’s Office is looking at the pool for filling the two vacancies on NCVHS. The Department has updated its strategic plan through 2018, with four strategic goals and action plans, programs and measures for each objective in those categories. There are significant data issues in virtually every one. There are also other targeted strategic initiatives.

In the health care reform area, the Department is monitoring implementation and impact using administrative data and survey, research, and surveillance data. To this end, it is developing data standards and guidance for addressing critical populations. ASPE is monitoring and reporting on enrollment data, among other things, and the federally facilitated exchanges collect demographic information on a voluntary basis. The enrollment data are supplemented by data from surveys, which have been enhanced to measure insurance coverage and other factors. Efforts continue to develop standards for demographic data, and to provide guidance to agencies. A major focus is the impact on vulnerable populations.

The HHS data strategy is looking at data gaps and issues, among which timeliness is a major one. ASPE has developed several pilot projects of Web-based approaches, and is looking at how to better align and integrate data streams. Another pilot involves research on small or hard-to-reach populations. Improving access to HHS data is another major priority for the Department; and it is studying the mosaic effect in a number of pilot studies. Mr. Scanlon commented on the risk of re-identification and the work on minimizing it. HHS is planning a workshop in the Spring on these topics, and he asked for suggestions of expert data-users in non-academic and non-governmental arenas.

Finally, he announced that through a project between NCHS and the Census Bureau, 4,000 Native Hawaiian and Pacific Islander households will be surveyed as part of the National Health Interview Survey.

Discussion:

Dr. Cohen urged that HHS develop a framework for assessing the impact of the ACA on health outcomes for newly insured populations, one that states can also use. Dr. Mays commented on the importance of including data on social determinants to understand the health of vulnerable populations. Mr. Scanlon pointed to Meaningful Use requirements as the best way to implement this kind of data collection, adding that agreement on a small set of measures would be helpful.

Dr. Suarez called attention to the topic of population health management as a promising frame and stimulus for the convergence of clinical and public health efforts, and he suggested that NCVHS look for opportunities to support this framing. Dr. Milman mentioned an HHS study on chronic disease management that is looking at both provider and public health information systems. Mr. Scanlon welcomed NCVHS input in this area, given the centrality of data policy issues. Dr. Green stressed that the Committee is “keenly interested” in this topic, as the foregoing comments indicate. Ms. Goss added that progress is critically needed to ease the pain-points for states as they develop the IT infrastructure and work toward the Triple Aim.

  • CMS – Denise Buenning (slides)

Ms. Buenning reported on the status of meaningful use and EHR incentives, operating rules, the health plan identifier, other administrative simplification initiatives, and ICD-10 implementation and testing.

Progress on meaningful use and EHR adoption is good, with new participants continuing to come into the program. On operating rules, she urged people to give their input to CORE, the authoring entity. CMS is expanding provider outreach regarding operating rules. The health plan identifier gets into full swing this year, and plans (including CMS-managed plans) are working on their enumeration strategies. This will provide CMS with a database of the universe of HIPAA-covered health plans for the first time. CMS is awaiting comments on CMS-0037-P, and needs to adopt a standard for claims attachments that will align with clinical data standards adopted in EHR certification and meaningful use stage 3 regulations. Several regulations will be released in 2014.

On ICD-10, she stressed that the October 1, 2014 deadline will not change. CMS will start external testing in March. State Medicaid agencies are reporting on their readiness on a quarterly basis, and CMS is providing technical assistance and training to them as needed. It has been preparing fee-for-service systems for implementation since 2010. Noting that “we are sensitive to the concerns of industry,” she described the activities in place in response to the concerns; for example, CMS will do broad end-to-end testing this summer, and it established a physician portal for ICD-10 to help physicians plan, implement, and track their progress. There is also on-the-ground technical assistance. She stressed that these activities and the support will continue after October 1.

  • ONC – Judy Murphy (slides)

Ms. Murphy quickly briefed the group on 11 topics including EHR adoption statistics, Stages 2 and 3 of Meaningful Use, SAFER guides, and anti-kickback. EHR adoption is going well with hospitals, less well with individual practitioners. Critical access hospitals and rural areas are lagging behind others, and ONC is sending staff to work with rural hospitals. Progress is tracked in the dashboard and maps on healthIT.gov. Ninety percent of products with Stage 1 Meaningful Use attestation are now certified in Stage 2. ONC is starting to discuss Stage 3 criteria, and the working group will submit its recommendations to the Policy Committee in March. She showed how the functional objectives in that stage drive to health outcomes, noting that this is the purpose and that the Meaningful Use stages are additive.

There are six SAFER guides risk assessment tools designed to help health care organizations ensure that their EHRs and HIT infrastructure are safe. In addition, a guidance issued in July requires accredited certified bodies to do surveillance of CEHRT. There are also two new price transparency requirements. ONC’s technical expert panel gave its final report on patient-generated health data; and the Stark exception anti-kickback safe harbor deadline was extended to December 2021. Also, the final report of the National HIE Governance Forum has been published.

Finally, Ms. Murphy gave the latest on the Blue Button, which five large pharmacy networks are now using in addition to VA, DoD and CMS to provide information to patients. An early version of the Blue Button Connector will be launched at the end of February.

  • ONC Privacy and Security Update — Helen Caton-Peters (slides)

Ms. Caton-Peters briefed the group on policy and projects of the Office of the ONC Chief Privacy Officer (OCPO). The policy areas include accounting for disclosures, critical infrastructure cybersecurity, and the White House Big Data Initiative; the projects are on data segmentation, models of notice of privacy practices, and a security risk assessment tool.

Accounting for disclosures has been an effort of the HIT Policy Committee (with the participation of Dr. Francis of NCVHS). It sent a transmittal, focused on development of a pathway for patients to receive reports of disclosures of information with the right to an investigation of inappropriate access. OCPO is coordinating a listening session at HIMSS on February 24 on critical infrastructure cybersecurity, for which NIST, in response to an executive order, coordinated the development of a Framework for sharing on cybersecurity incidents. The White House in January 2014 launched an initiative and comprehensive review on big data and the future of privacy. HHS is participating along with other agencies, and a working group has been formed to consider a set of issues. The result will be a report to the President that will serve as the foundation for an action plan.

HL7 and IHE have approved a “normative” standard for data segmentation for privacy. ONC hopes for uptake by industry, vendors, stakeholders, and the healthcare community as a way to manage sensitive information. ONC is working with the HHS Office of Civil Rights to develop models of Notice of Privacy Practices, a Spanish version of which was released on February 19. The two Offices have issued a challenge to innovators to develop an electronic format for the Notice. Finally, a downloadable security risk assessment tool will be released in March.

  • OCR Update and Outreach – Rachel Seeger (slides)

Ms. Seeger reported on OCR’s recent work and plans in the areas of rulemaking, guidance, enforcement, and public outreach. She announced the final rule on CLIA, calling it “big news” for patients who as of October will be able to access their test results directly from labs. In addition to the Spanish model Notices of Privacy Practices, described above, other guidances in the queue include one on mental health disclosures. She described two enforcement actions and said the important message for providers and health plans is the necessity of having policies and procedures in place for a breach. OCR will mount a permanent audit program in 2014. Finally, by the end of January, there had been more than 1.8 million unique views of its YouTube videos.

Discussion

Dr. Tang expressed the wish that more people could become aware of the HHS activities reported on in the foregoing updates. He praised the effort to make the provider-oriented tools more usable, and suggested also giving consumers/patients checklists for what to look for.

There was considerable discussion of data segmentation, including a short briefing from Dr. Suarez, who worked on the standard with HL7 and general agreement that NCVHS should receive a more detailed update on the topic. Ms. Milam noted the variety of state law in this area, some of it decades old, and the need for a crosswalk. Ms. Jackson was asked to put the topic on a future agenda.

Letter from Working Group on Data Access and Use – Dr. Carr (slides)

Dr. Carr reviewed the charge of the Working Group, which HHS created to advise the Department on expanding access to and innovative uses and applications of HHS data. It is chaired by Dr. Carr and composed of several NCVHS members and a diverse group of other expert data users and innovators. The intersecting themes of its work encompass data supply, traditional applications, data demand, and innovative applications all with an eye to protections, standards, quality, and reliability. Mr. Scanlon added that HHS is especially interested in practical suggestions for improving healthdata.gov, to make the data useful for improving the health of the nation.

After 18 months of work, the Working Group has drafted a letter to the Secretary summarizing its major observations and findings to date. Rather than presenting the full gamut of topics it has covered, members decided to focus in this letter on three areas of desired improvement: timeliness, granularity, and metadata. Dr. Carr reminded NCVHS colleagues that HHS designed the Working Group to be “disruptive” that is, to bring new perspectives from data users from outside customary HHS arenas. The letter reflects a work in progress that evolves with every meeting and conference call. The interactions among the diverse members of the Working Group and between them and the material they are studying generate ongoing learnings; and the effort continues to become a group that “speaks with one voice.” She and others noted that the work is likely to lead to additional letters.

Turning to the draft letter, Dr. Carr said the starting point is the question of whether the 998 data sets that HHS has liberated are delivering “the bang for the buck,” and if not, why not. NCVHS members engaged in a wide-ranging discussion of the letter, covering both its general purpose and scope and aspects of each proposed topic. (See transcript for details.) Ultimately, they agreed that because the topic of granularity, while critically important, raises complex stewardship issues related to re-identification risk that require nuanced solutions, it should not be included in this first Working Group letter. Drs. Cohen and Stead expressed interest in incorporating the topics of timeliness and granularity into the forthcoming NCVHS work on communities as learning systems. Dr. Carr noted that the Committee needs to learn more about what HHS is already doing with respect to sub-population data. Dr. Blewett called attention to the many gaps in state-level federal data, for example in the NHIS.

Several members praised the intent and thrust of the Working Group letter and urged the group to press on in refining it so it can be sent to the Secretary. Ms. Goss called attention to the opportunity to link the Working Group’s activities with the NCVHS work on communities as learning systems so they will inform each other. Ms. Jackson said she would try to help tie the threads together. In that vein, Dr. Carr noted the benefit of being able to talk through the Working Group’s work and findings in the context of the full Committee meeting. Dr. Green observed that the letter reflects converging insights derived both from listening to communities and from the Working Group’s explorations.

Dr. Carr said she would bring a revised version of the letter to the Committee the following day for discussion, the results of which would then be reviewed with the Working Group. She expressed appreciation for the opportunity for “convergence and integration” afforded by this discussion. Dr. Green was the first of several people to raise the question of whose job it is to see that data are used properly for public good, noting that it highlights the absence of an infrastructure that would allow users all the way to the local level, where health is won or lost, to meet data properly. He wondered if NCVHS should suggest the development of a new work force and infrastructure that focuses on this area.

Standards Update – Dr. Suarez and Mr. Soonthornsima (slides)

This status report covered the Subcommittee’s work plan, the HIPAA report to Congress, the November 2013 hearing on public health data standards, and the February 19 hearing on HIPAA and ACA administrative simplification.

After summarizing the plans for 2014, Dr. Suarez gave an overview of the HIPAA report. Committee members responded to his request for comments on proposed principles to consider when evaluating the adoption of new standards, and for suggestions of any other topics to cover in the report. The final draft will be presented for action at the June meeting. One issue raised was whether HIPAA is having an unintended chilling effect on health departments with respect to providing data to communities; the need for community education on this subject was noted. Dr. Vaughan proposed exploring “how we can create an environment for consensus and education as more people enter into this space.”

The NCVHS public health data standards hearing examined the current state of standards being used in public health exchanges and the incentives and issues around standards. Dr. Suarez summarized the themes heard in the meeting and the possible recommendations they gave rise to. (See slides or transcript for complete list.) A major theme was the need to upgrade the public health information infrastructure to be on par with the development and adoption of the EHR system. This will require significant investments, given the complexity and variability of public health infrastructures, particularly at state and local levels; the emphasis should be on optimizing common capabilities and pursuing shared services and resources. A large area of recommendations concerned the opportunity to pursue a “Health Statistics Systems Improvement Act” by Congress to modernize and advance the public health information infrastructure and workforce. Another idea was creation of a trust fund for this purpose; and another was to leverage other public policy and programs such as Meaningful Use to align incentives and foster collaboration.

Dr. Cohen asked about the meaning of “public health” in this context, given the range of possible definitions and uses, and was told the context is public health agencies. He noted that the emerging recommendations align with ones emerging in other corners of NCVHS, and Dr. Suarez said the recommendations from the hearing should be developed by the full Committee, perhaps presented as a “stepping-stone series.”

There was some discussion of the need and context for linkage between public health surveillance indicators and health data to enable population health monitoring. Mr. Tagalicod commented on appropriate programmatic and policy vehicles and cautioned against over-reliance on the EHR and Meaningful Use to avoid losing sight of the goal. After noting that the ehealth roadmap discussion can help maintain the proper context, Mr. Soonthornsima shared highlights from the previous day’s hearing. It covered these major topics: operating rules, EFT and ERA, ICD-10, HPID, and a DSMO request regarding pharmacy benefits. (See slides.) Members emphasized the importance of quantifying the benefits of EFT/ERA adoption to entice adoption.

Members then reconvened in a series of subcommittee “blocks” (in the context of the full Committee meeting), the third of which began Day Two of this meeting.

Subcommittee on Privacy, Confidentiality and Security Block (slides)

To begin the session, Ms. Bernstein gave a brief overview of the contents of the Subcommittee’s portion of the HIPAA report. Dr. Francis then introduced Maureen Henry, who is conducting an environmental scan and preliminary analysis of community health data stewardship topics for NCVHS. The scan focused on what issues need to be addressed and what protections communities have in place that might serve as models for other communities. The Subcommittee intends to develop dynamic guidance resources compiling best practices in the area of community data stewardship.

Ms. Henry said she had followed up with people who had testified at NCVHS hearings in 2011-13. Her findings were consistent with early ones, that privacy is “not a major focus” for community leaders, and the status of protections and protocols seems unchanged since the NCVHS hearings. De-identification continues to be a major approach to privacy protection (generally without data use agreements), along with aggregation and HIPAA compliance. She reviewed the risks and limitations of all three approaches. An important finding was that engaging communities in advance of data collection or repurposing can avert adverse outcomes downstream and improve data quality, access to subjects, and study design. Community participation appears to reduce concerns about individual privacy, confidentiality, and small-group stigmatization. The limitation here is that many communities lack a governance structure, which can be challenging and costly to create.

Ms. Henry also found that while the Subcommittee is interested in collecting case studies of best practices, the scan showed that they are in short supply. A major thread of the discussion with the Committee concerned what privacy-related resource(s) would be most useful to communities. The group discussed the idea of a “plain language” explanation of privacy issues and approaches for community use, including how to define that term with respect to target audiences. A related idea was to increase awareness of the importance of explicit stewardship practices with respect to community data. It was suggested that a resource on privacy issues and approaches could be useful to public health officials as well as community groups. Other members asserted that a set of “recipes,” a toolkit, or a check list would be more useful than a plain-language explanation.

Dr. Francis then reviewed the proposed next steps for the Subcommittee, which include synthesizing the findings and recommendations from past letters and thinking through possible resources for communities in consultation with HHS. Members encouraged the Subcommittee to clarify its target audience(s) and their needs, in order to position its products to be useful to the end-user, possibly with reference to a few use cases. Dr. Mays stressed the need to distinguish between what HHS needs and what communities need and urged clarity about the intended focus. (Later she contrasted what NCVHS thinks communities need and what communities themselves think they need, adding that if the NCVHS focus is the former, it should make that explicit.) Mr. Walker suggested starting with a cognitive work analysis to determine precisely what people are doing, what they need, their preferred learning modes, and what NCVHS can support. Dr. Cohen noted the resonance of these points with the community data readiness discussions and suggested that the ultimate work product(s) might prove to be a series of toolkits or primers released over several years.

In conclusion, Ms. Kloss observed that a workshop or hearing may not be in order, and that the next step may be to do the definitional work and begin to define and design a possible “recipe book.” She stressed that the Subcommittee is “determined to get a real product out of this exploration.” In addition, the Subcommittee will finalize its part of the HIPAA report and identify an emerging issue for future study. Dr. Green urged the Subcommittee to include in its context data that are “far outside of HHS’s jurisdiction.” The co-chairs welcomed Dr. Suarez’ suggestion for a joint session on data segmentation.

Discussion continued about what kind of product or resource might be most useful to community members to help them understand and minimize risk. Ms. Henry predicted that these issues would intensify as PCORI and growing community-based participatory research stimulate localized data collection.

Subcommittee on Population Health Block – Drs. Cohen and Stead

This session was dedicated to a review and discussion of the proposed Subcommittee work plan for 2014 and beyond, referencing planning documents that had been shared with NCVHS members. Dr. Cohen described the proposed streams of work: the Framework Project (data continuum and methods framework streams), and the related streams of community data readiness and technical assistance. He noted that the theme of granularity is a crosscutting topic of interest.

Dr. Stead gave an overview of the Framework Project, in which members of all subcommittees will participate, facilitated by the Population Health Subcommittee. He noted the direct relevance of the framework to the granularity, timeliness and metadata issues raised earlier in the day by the Working Group. For example, the framework provides a systematic way of working with data at different levels of granularity and a context for developing methods “recipes” for data use. (He later shared his observation that past NCVHS and IOM documents offer many examples of the data continuum but “almost nothing that relates to methods.”) Dr. Breen described the appendix she developed for the Framework description as an example based on a cancer use case, adding that a big part of the framework task is to help people navigate through the many federal datasets. The Subcommittee plans to hold a workshop at which participants will develop the framework further, using additional use cases.

The other set of tasks for the Subcommittee concerns community readiness to use data, the technical assistance now available to them from the federal government and other sources, and what other forms of assistance would be helpful to communities. Its goal is to develop guidance for data providers on how to provide meaningful data and on assessing community readiness and need for data support. In addition to (and following) the workshop described above, the Subcommittee will hold a two-day roundtable on these topics in the Fall, aimed at a report and recommendations to the Secretary.

After expressing appreciation for the planning represented above, Dr. Green suggested that the theme of granularity is embedded in the other themes. Ms. Milam noted the opportunity for privacy and population health to work jointly to identify use cases.

Dr. Blewett raised a question that Dr. Cohen said would be a good conversation to have: Is it the federal government’s responsibility to support neighborhood use of data? Dr. Stead noted that the purpose of the framework is to help people think about and use data at many levels, from the individual to the national population. In response, Dr. Blewett stressed that the uses cases will be critical, and “should be real;” and she added that an important use case to examine, and that government should support, is the intersection of public and private sector data.

Mr. Scanlon commented that the Census Bureau has experience with the collection, dissemination, use, and protection of local data, and there are models that should be consulted from social science (Census) and from business (e.g., the Bureau of Economic Analysis) as well as experts in these areas. He urged thoughtfulness and care in any development of tools (including websites), because the maxim “if you build it they will come” does not necessarily apply.

Another theme of discussion in this session was the challenge and importance of parsing apart the responsibility and leadership for the closely related tasks in the overall NCVHS work plan. Further, there are choices to be made given the ambitious plans, the need for focus, and the limits of available resources. Dr. Green asked Ms. Jackson to prepare an agenda for an Executive Subcommittee meeting, to be held soon to address these questions. Dr. Suarez observed that NCVHS “attacks every problem from a three-dimensional perspective”; and regardless of who takes the lead, the other two subcommittees need to be engaged, along with the Data Working Group.

In response to an invitation from Dr. Green, Mr. Burke made a motion to approve the work plans presented in the foregoing Subcommittee blocks. The motion passed unanimously.

– Day Two –

Subcommittee on Standards Block – Dr. Suarez and Mr. Soonthornsima (slides)

The agenda topics for this final subcommittee block included the HIPAA report, public health data standards, and the February 19 hearing on administrative simplification. (Also see notes on the Subcommittee briefing, above.)

Dr. Suarez noted that the hearing on public health data standards was jointly hosted by the three subcommittees. The resulting letter, which the Subcommittee on Standards is drafting in consultation with the other subcommittees, will include recommendations. He then summarized the major themes of the recent hearing on HIPAA and ACA administrative simplification, which will be reflected in a letter the Subcommittee is drafting. Several members endorsed Dr. Cohen’s suggestion to develop a separate letter and recommendations, with a quick turnaround time, on the time-sensitive subject of ICD-10. Other topics flagged for special attention are prior authorization between prescribers and processors, the health plan ID, and EFT/ERA. From the audience, Dr. Steve Lazarus made well-received suggestions, two on behalf of CAQH Core and one speaking as an individual.

Finally, Dr. Suarez welcomed Terri Deutsch as the new lead staff to the Subcommittee, and expressed appreciation for her contributions as lead author of the HIPAA report.

Supporting Communities as Learning Systems: Report to the Data Council – Dr. Cohen (slides)

Dr. Cohen reported on his January 8 presentation and discussion with the HHS Data Council, which focused on NCVHS work on supporting communities as learning systems for health. He told them about the Committee’s desire to help shape the health data vision and revitalize the Federal role in supporting community-driven change. He also stressed the Committee’s interest in aligning its activities with those of the Data Council and called attention to the responses nearly 100 community organizations to an NCVHS request for information from about their key data issues.

The shared themes between NCVHS and the Data Council include an interest in data liberation, the responsive to communities and desire to understand target audiences, and the need on everyone’s part to integrate data release with concerns about privacy and support. The notion of communities as a learning system resonated with Data Council members. Dr. Cohen found that none of the members had any idea of the breadth and depth of the Committee’s work, and they were excited by the scope of activities. This points to the need to do more outreach with HHS agencies connected to NCVHS work. Data Council members expressed particular interest in granularity issues. An action step for NCVHS is to find ways to communicate and collaborate more closely with the Data Council.

Ms. Jackson and Mr. Scanlon underscored the point about excitement, and Ms. Jackson added that the meeting led to an ongoing connection to the National Quality Forum through her. Mr. Scanlon said agency representatives had varied responses: the statistics agencies are not sure of their role in local data, while CMS data do have local applications. There is general caution about creating and offering tools or websites, because of questions about usage and uptake. The Council also discussed federal technical assistance, with an emphasis on the importance of having “a good analyst” rather than “another website.” Mr. Scanlon concluded that the Data Council is interested in “moving forward in a sophisticated and nuanced way” toward some joint activities such as a workshop or summit or review of technical assistance models. Members discussed the possibility of inviting Data Council members to NCVHS meetings, and continued the discussion of the most effective ways of reaching out to and supporting communities and what agencies and organizations to collaborate with.

Dr. Jon White reiterated the point about getting staff time for HHS staff to work with NCVHS, and suggested reaching out to the leaders at SAMHA, HRSA and AHRQ to ensure that they understand the importance of doing so.

Dr. Tang proposed a “traveling salesman” or promotora model of outreach, where the emphasis is on getting people out into the field rather than presuming that “if you build it they will come.” The first message to communities, he said, concerns the power of data in helping with solutions. And communities may need help in identifying the most pressing problems before they focus on solutions. Dr. Green cited the agricultural extension agency model as a highly effective one; Dr. Walker questioned whether this is still affordable, and cited the effectiveness of online courses.

Letter from Working Group on Data Access and Use – Dr. Carr

Dr. Carr presented a revised draft of the letter discussed the previous day. There was further discussion, and participants offered a number of editorial suggestions. She expressed appreciation for the insights from staff reflecting multiple perspectives within HHS, which help to ensure completeness in the treatment of subjects, and she noted that this is facilitated by holding the meetings in the Humphrey Building.

After several minutes of discussion, Dr. Green stated that while the discussion had been a “stunningly useful exercise for us,” it was not likely to lead to closure in the available time. He proposed a process for revising and ultimately approving a letter from the Working Group, culminating in a “virtual NCVHS meeting by phone in April or May to approve it (possibly along with other letters). Noting that there is no precedent for working in the current NCVHS structure, he asked members to respond to future Working Group products in a way that “takes advantage of the Working Group’s expertise.” Mr. Scanlon underscored this point and urged the Committee to find a more efficient process for reviewing Working Group products.

Healthy People 2020: Social Determinants of Health – Carter Blakely, ODPHP (slides)

Ms. Blakeley is Deputy Director of the HHS Office of Disease Prevention and Health Promotion. She said that Healthy People is a national agenda for disease prevention and health promotion with measurable objectives (1,200 at present) and targets to be achieved by 2020, developed through a stakeholder-driven process, managed by an interagency steering committee, and based in the HHS Office of the Assistant Secretary for Health. This is the fourth set of decade-long objectives and the first, because it is now released online, that can be updated annually, using a formal input, comment, and clearance process. While an independent assessment by NORC recommending scaling back the number of objectives and moving more “upstream” in the indicators, many stakeholders in public meetings objected to eliminating any objectives because of their importance in benchmarking and guiding public health activities.

The advisory Committee asked for a focus on the social determinants of health (SDOH), with several overarching goals. They include creating social and physical environments that promote good health for all, the importance of health across the lifespan, and health equity. Besides elevating the presence of SDOH in Healthy People 2020, ODPHP developed leading health indicators in consultation with the Institute of Medicine, one of which is specific to SDOH. It also created a topic area for SDOH, using a place-based approach and prioritizing five domains of determinants: neighborhood/built environment, education, economic stability, health and health care, and social and community context. The workgroup on SDOH, which is composed of HHS staff and leading experts from different sectors around the U.S., took two years to come up with the structure for the topic area. Ms. Blakeley gave examples of indicators in each domain, and said they are working toward having objectives in each area. One challenge moving forward is that there are already roughly 600 SDOH objectives integrated throughout the domains of Healthy People and complement the SDOH domain.

Next steps include developing additional objectives and developing the website, healthypeople.gov, to include an SDOH portal, and continuing the conceptual and theoretical work on what SDOH means and how to put it into practice. ODPHP offers an “evidence-based resources” tool that connects the objectives to evidence-based interventions. In addition to its website, ODPHP maintains a Healthy People listserv and consortium through email, twitter, linkedin, and YouTube.

Discussion

Dr. Green remarked that “the overlap is virtually complete” between many points made about Healthy People and the National Committee’s work on communities as learning systems, including a shared effort to figure out how to use data at the community/local level.

Dr. Suarez raised the concept of wellness, and Ms. Blakely said “it is there” although interpreting and operationalizing it is difficult because of the range of views about defining and measuring it. Members had comments and questions about the approaches to mental health, non-disease indicators for aging (e.g., loneliness), social connectedness, sexual orientation/gender identity, and granularity. Ms. Blakely affirmed that granularity is a challenge, adding that sometimes even state-level data can be hard to get. ODPHP works with the Health Indicators Warehouse to get state-level data for all of the objectives; these and/or national data can at least provide a benchmark for communities. ODPHP also works closely with NACCHO, which has developed a presentation for county and local health departments about how to link local data into the Healthy People 2020 framework; and it works with the Robert Wood Johnson Foundation and Pew on social determinants. Dr. Cohen made a “plea to not be totally focused on data availability as part of the decision to adopt,” but rather “to think creatively about important quality of life measures that are emerging” because there may be alternative ways to generate the information.

Strategic Discussion, NCVHS Involvement, and Other Business

Ms. Jackson showed a screen shot of the new NCVHS website, which is under development. She and others then gave status reports on several events and meetings in which NCVHS is or may be involved:

  • NCHS National Conference on Health Statistics (August)
  • APHA (November, New Orleans)
  • Network for Public Health Law Annual Conference (October, Atlanta)
  • Implementation of Public Health Informatics Conference (April 30-May 2, Atlanta)

Dr. Suarez introduced and welcomed Terri Deutsch of CMS as the new lead staff for the Subcommittee on Standards.

After very brief summaries of the plans for each Subcommittee, the group discussed plans for an Executive Subcommittee conference call in the near future to coordinate all the ambitious plans. There will also be a virtual meeting of the full Committee sometime before the June meeting. They then revisited the process for finalizing and approving the letter still in process by the Working Group. Dr. Walker made a motion to distribute the revised version to Dr. Green and thence to all Committee members, with a deadline for responding, and to post it on the NCVHS website at the same time. The Executive Subcommittee will make a final decision about the letter based on the nature of the comments. The motion was passed with one abstention.

Dr. Green asked Ms. Jackson and Dr. Carr to work out a process map for handling products from the Working Group in the future, for review by the Executive Subcommittee. He then announced that Dr. Tang, whose term as an NCVHS member is expiring, has agreed to join the Working Group.

Dr. Carr then announced that she is stepping down as Working Group Chair in June, to be succeeded by Dr. Mays. She hailed the fact that Dr. Mays’s expertise and knowledge in the space in which the Working Group advises HHS will be positive in leading the group “into Phase II.” Dr. Mays praised Dr. Carr’s effectiveness in getting members of the disparate group to work together.

Mr. Scanlon expressed gratitude on behalf of the Department to Dr. Carr, Dr. Tang, and Dr. William Scanlon for their long and exceptional service. Dr. Green then welcomed Dr. Blewett as an active NCVHS member, and asked her to introduce herself. She directs a research center on access and health insurance coverage at the University of Minnesota. One of its projects is the Integrated Health Interview Survey, which harmonizes the NHIS and makes it web accessible for researchers and others. Her focus, she said, is to access data for research and policy purposes, mostly at the state level; and she added, “maybe I will be doing that for local level.” Finally, after members and staff made brief final comments at his invitation, Dr. Green adjourned the meeting.

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

/s/       June 12, 2014

Chair       Date