Minutes of the December 2-3, 2014 NCVHS Full Committee Meeting

Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

December 2-3, 2014

National Center for Health Statistics, Hyattsville, MD

MEETING MINUTES

The National Committee on Vital and Health Statistics was convened on December 2-3, 2014 at the Hubert Humphrey Building in Washington, DC. The meeting was open to the public. Present:

Designated Federal Official

James Scanlon, ASPE, Exec. Staff Director, Acting Chair

Committee members

John J. Burke, MBA, MSPharm.
Raj Chanderraj, MD, FACC (by phone)
Bruce Cohen, Ph.D.
Llewellyn Cornelius, Ph.D.
Alexandra Goss
Linda Kloss, RHIA, CAE, FAHIMA
Vickie Mays, Ph.D., MSPH
Len Nichols, Ph.D.
William W. Stead, M.D.
Walter Suarez, M.D.
James Walker, MD, FACP (by phone)

Absent:

Sallie Milam, J.D., CIPP/G
Lynn A. Blewett, Ph.D.
Ob Soonthornsima

Lead Staff and Liaisons

Debbie Jackson, NCHS, Interim Exec. Secretary
Terri Deutsch, CMS
Maya Bernstein, ASPE

Others (not including presenters)

Larry A. Green, M.D., previous Chair
Leslie Pickering Francis, J.D., Ph.D., previous member
Katherine Jones, NCHS
Susan Queen, ASPE
Michelle Williamson, NCHS
Tammara Jean Paul, NCHS
Marietta Squire, NCHS
William Alfano, BCBSA
Kelley Turek, AHIP
Stephen Lazarus, BIG/CAQH
Victor Richardson, W VA Health Care Authority
Dan Rode, Dan Rode & Assoc.
Susan Kanaan, consultant writer
Leah Vaughan, M.D. (Working Group)

Note: The transcript of this meeting and speakers’ slides are posted on the NCVHS Web site <ncvhs.hhs.gov>. Use the meeting calendar and agenda to locate them. Final versions of NCVHS documents are posted in “Recommendations Reports & Presentations.”

EXECUTIVE SUMMARY

Updates from the Department

ASPE―Jim Scanlon
OCR Update and Outreach―Rachel Seeger
CMS―Todd Lawson and Elizabeth Holland, CMS
ONC―Jon White, Acting Deputy National Coordinator and Chief Medical Officer
ONC Privacy and Security Update―Lucia Savage, ONC Chief Privacy Officer

Mr. Scanlon reported that former ONC Director Dr. Karen De Salvo is now Acting Assistant Secretary for Health. He updated the Committee on initiatives including the second ACA enrollment period, a strategy for monitoring the ACA, the HHS Strategic Plan, the Open Government Plan Revision, and several Data Council initiatives. At the Secretary’s request, ASPE has created a strategic planning system for tracking progress on all the Department’s strategic initiatives.

Ms. Seeger said OCR has announced the end of the enforcement delay for the Notice of Privacy Practices for CLIA labs. It has published a new bulletin on privacy and emergency situations that has been widely distributed. Coming up are a guidance on cloud computing, an important enforcement action, a final rule on mental health prohibitions, and guidances on minimum necessary and other topics.

Ms. Holland updated the group on CMS’s HITECH EHR incentive program. Mr. Lawson reported on CMS’s outreach and education activities, which include expanding its Administrative Simplification library. HHS has issued an enforcement discretion to review NCVHS recommendations regarding rectifying rule-making on covered entities and consider appropriate next steps. He described a number of ICD-10 activities. CMS has created a new Office of Enterprise Data and Analytics to help CMS better harness its data resources to guide decision making and promote external access to and use of its data.

Dr. White reported on the Federal Strategic Health IT Plan for 2015 and beyond, which will soon be released for public comment. After that, the interoperability roadmap will be released for public comment. A new JASON report, “Data for Individual Health,” was just posted on healthit.gov.

Ms. Savage described forthcoming hearings on big health data, with two four-hour public listening sessions. It was requested by the Executive Branch and is co-hosted with the ONC FACAs. In other news ONC has developed a privacy and security guide and a new security risk assessment tool for small practices.

NCVHS members talked with each of these HHS presenters and offered suggestions and the Committee’s support in relevant areas.

Review Committee on Data Standards―Dr. Suarez

The recent designation of NCVHS as the ACA Review Committee has been assigned to the Subcommittee on Standards. The assignment is to evaluate the status of transactions and their standards, code sets, identifiers, and operating rules that have been adopted in regulations. He stressed adoption as a key distinction between the ACA Review Committee functions and those of the Standards Subcommittee. The charter of the Review Committee is posted on the NCVHS website. The Review Committee will hold structured hearings at least biannually, in mid-year (starting in June 2015), to convene testifiers to talk about how things are going with different transactions and to allow public input. Its first task over the next six months is to establish an evaluation framework and develop baseline measures for existing standards and operating rules. The ACA Review Committee will provide updates at every quarterly full Committee meeting.

NCVHS members discussed their shared interest in also looking more broadly at whether the ACA is meeting the goals set for it, including cost reduction. They will plan this activity at the February NCVHS meeting.

New Directions at the Agency for Health care Research and Quality (AHRQ)―Bob Kaplan, Chief Science Officer (slides)

AHRQ has a new mission and focus on patient-centered outcomes research, emphasizing dissemination and implementation, working with the Patient-Centered Outcomes Research Institute (PCORI). The goal is to reduce the long delay between “when knowledge becomes known and when it gets implemented in practice.” After discussing this new focus, Dr. Kaplan highlighted three topics in the AHRQ portfolio: harmonizing psychosocial measures for EHRs, MEPS, and HCUPS. Members welcomed Dr. Kaplan as the new AHRQ liaison to NCVHS.

The CDC Surveillance Strategy―Chesley Richards, Deputy Director for Public Health Scientific Services (slides)

The CDC Office of Public Health Scientific Services has two centers, NCHS in Hyattsville and the Center for Surveillance, Epidemiology and Lab Services in Atlanta. Dr. Richards presented CDC’s new surveillance strategy, developed in consultation with many partners. It focuses on four issues: improving the availability and timeliness of data release, effective use of emerging information technology, correction or termination of ineffective or redundant surveillance systems, and maximizing the effectiveness of available agency resources. He described several initiatives designed to address these priorities, and he outlined some of the structural changes and new practices that are implementing the strategy.

In a rich discussion period, Dr. Richards described CDC’s efforts and plans to create opportunities for more shared learning and collaboration with states and communities, including bidirectional information exchange. He said CDC is aware of the need for training for local public health staff, and his plan is to focus on training in place to help give state and local health departments the tools to leverage informatics in their population health work.

Subcommittee on Standards―Dr. Suarez (slides)

Dr. Suarez reviewed the major standards activities of 2014 and presented the Subcommittee’s work plan for 2015. In addition to starting the ACA Review Committee process, it will take action on operating rules for remaining transactions, follow up on several 2014 topics, move ahead on population health/public health standards, begin work on standards for transparency in health care, and work on administrative transactions used in health care reform and long-term care and behavioral health. It will also work on the next generation of transactions to support health care reform and on the eHealth Roadmap.

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

The Subcommittee has four objectives for 2015: developing a letter to the Secretary regarding HIPAA Section 1179 and financial institutions; developing a letter to the Secretary surveying the state of HIPAA understanding and implementation among small providers and other covered entities that are not large health care systems or payers; continuing to work on the privacy, confidentiality, and security aspects of community health data use; and disseminating the Toolkit as widely as possible. Ms. Kloss described the plans in each area.

Subcommittee on Population Health―Drs. Cohen and Stead (slides)

In this session, the Subcommittee co-chairs presented the findings and possible actions ensuing from the October Roundtable on Supporting Community Data Engagement. (See the Roundtable summary for details about the meeting.) Based on the Roundtable, the Subcommittee is considering these potential NCVHS actions: developing recommendations for the Secretary, establishing a community of practice, convening a roundtable on community data literacy, continuing development of the NCVHS Framework, and facilitating platform alignment. NCVHS members had a number of suggestions for future approaches.

IOM Report: Capturing Social and Behavioral Domains and Measures in EHRs―Bill Stead, IOM Committee Co-Chair (slides)

Dr. Stead co-chaired this IOM committee with Nancy Adler, Ph.D., of the University of California, San Francisco. The committee had wide-ranging expertise, and the study enjoyed broad sponsorship. It was asked to identify domains for consideration by ONC for Stage 3 Meaningful Use, to determine criteria for selection, to identify domains and measures for inclusion in all EHRs, to consider the implications of incorporating recommended measures, and to identify issues in linking other data systems. The two-phase project generated two reports, the second of which was released in November 2014. Dr. Stead outlined the conceptual frameworks and models used; the six criteria developed for identifying candidate domains and measures; the process the committee used; and the resulting findings and recommendations. The IOM committee constructed a parsimonious and complementary set of measures, with 12 measures in 11 domains which take 25 questions to assess. Those that were not selected set up the research agenda going forward. The full report can be downloaded at no expense: <iom.edu/ehrdomains2>.

OMB Guidance on Administrative Data Sharing―Dr. Queen

In February 2014, OMB sent a memo and guidance to the heads of all executive departments and agencies on providing and using administrative data for statistical purposes, in support of the strategic use of data within federal government to enhance statistical uses. This is not for open data for public access. ASPE was asked to coordinate the Department’s response to the OMB memo, in collaboration with NCHS. The Data Council is convening the responses. A report was due last summer. OMB will use that information to inform agencies on the uses of the guidance and any needed revisions or technical assistance, with a timeline for future reporting. In the discussion period, Dr. Cohen urged ASPE to provide the states and NAPHSIS with a summary and or a webinar on the OMB memo and guidance

Briefing on the Working Group on Data Access and Use ―Dr. Mays and Damon Davis, HHS IDEA Lab

The Working Group’s purpose is to advise the Department on data access and use. Mr. Davis described the Department’s perspective on the topic and on this relationship. Dr. Mays said the Working Group will meet with agency representatives to discuss and assess the readiness of their agencies to increase access and usability. Before doing so, it is developing guiding principles for making data accessible and usable.

Committee Priorities and Plans; Final Comments

Mr. Scanlon then expressed gratitude to Dr. Green and Dr. Francis, on behalf of the Department, for their eight years of service on the National Committee. All present responded by giving these retiring members a standing ovation, and Dr. Francis and Dr. Green offered a few concluding comments.

―DETAILED SUMMARY―

―Day One―

Welcome and Introductions

Due to the expired term of Dr. Green and the fact that the next Chair was not yet appointed, this meeting was chaired by Executive Staff Director James Scanlon. After introductions of all present, he reviewed the agenda.

Updates from the Department

ASPE―Jim Scanlon

Mr. Scanlon reported that former ONC Director Dr. Karen De Salvo is now Acting Assistant Secretary for Health. After noting that the Secretary is a very data- and impact-oriented person, he updated the Committee on several initiatives including the second ACA enrollment period, the HHS Strategic Plan for the next four years, and the Open Government Plan Revision. At the Secretary’s request, ASPE has created a strategic planning system for tracking progress on all the Department’s strategic initiatives. “The mystery continues” about the fate of the 2015 budget; meanwhile, HHS is working on its 2016 budget request. He also commented on the strategy for monitoring the ACA, using NCHS surveys and administrative data. An NCHS Research Data Center (RDC) has been established at ASPE in the Humphrey Building. The initiative to standardize the demographic data in administrative data continues. It includes an initiative to improve data on the LGBT population. The HHS Data Council has undertaken initiatives on increasing response rates and developing an HHS data collection strategy. A report based on a study of the mosaic effect will soon be released.

In the discussion period, Dr. Cohen suggested expanding the uses of RDCs to give communities access to aggregate data for analysis. He wondered how NCVHS, as it develops recommendations for the Secretary on community data use, could align on a more ongoing basis with the work going on in ASPE. Mr. Scanlon said he is open to ideas. Dr. Mays wondered whether NCVHS could have a liaison to the Data Council. Noting the number of formerly funded research topics that have “fallen off the radar,” she proposed development of a research agenda. Mr. Scanlon endorsed a list offered by Dr. Suarez itemizing six ASPE issues on which NCVHS can assist the Department in 2015.

OCR Health Information Privacy Update―Rachel Seeger (slides)

OCR has announced the end of the enforcement delay for the Notice of Privacy Practices for CLIA labs. On November 11, it published a new bulletin on privacy and emergency situations that has been widely distributed. Its purpose is to underscore that HIPAA privacy rule protections for patients are not to be set aside in an emergency. Organizations are using OCR’s new Twitter channel, @HHSOCR, to push this out. Coming up are a guidance on cloud computing, an important enforcement action, a final rule on mental health prohibitions, and guidances on minimum necessary and other topics.

In the discussion period, in response to a question from Ms. Kloss, Ms. Seeger said OCR would welcome NCVHS advice on the 1179 exception to HIPAA related to financial institutions.

CMS―Todd Lawson and Elizabeth Holland, CMS

Ms. Holland updated the group on CMS’s HITECH EHR incentive program. More than 1600 hospitals have chosen to attest for stage two of Meaningful Use. CMS is working on stage three, with a proposed rule going through clearance and to be released sometime in 2015.

Mr. Lawson then gave an update on outreach and education activities. CMS has a goal of expanding its web-based Administrative Simplification library over the coming year, and it is expanding its toolkit and training resources in the same area, with several new materials coming out soon. HHS has issued an enforcement discretion to review NCVHS recommendations regarding rectifying rule-making on covered entities and consider appropriate next steps. On ICD-10, it is briefing Congress on ICD-10 on a quarterly basis and is focused on testing and post-implementation planning. Among other outreach initiatives, it is also creating the ICD-10 Success Initiative in partnership with WEDI to promote awareness of the transition.

Finally, CMS has created the new Office of Enterprise Data and Analytics (EDA), led by Niall Brennan. Its purpose is to help CMS better harness its data resources to guide decision-making and promote external access and use of data and to support quality initiatives and patient-centered care.

In response to a question, Mr. Lawson said there are no plans at present for another pilot of data exchange using new standards. However, he added that they would consider it. Ms. Kloss said NCVHS stands ready to support the recent NCVHS letter supporting going forward with ICD-10.

ONC―Jon White, Acting Deputy National Coordinator and Chief Medical Officer

After saying that active staff recruitment is under way at ONC, Dr. White reported on the Federal Strategic Health IT Plan for 2015 and beyond, which is required by HITECH. It will soon be released for public comment. Sometime after that, the interoperability roadmap will be released for public comment, outlining the plans to achieve the vision. FDA, ONC and Pew Charitable Trust are convening a meeting on unique device identifiers the week of December 8; and ONC’s annual meeting is February 2-3. It is working on certification regulation for Meaningful Use, and anticipates release in tandem with the NPRM. A new JASON report, “Data for Individual Health,” was just posted on healthit.gov.

ONC Privacy and Security Update―Lucia Savage, ONC Chief Privacy Officer

After describing her wide-ranging professional experience and interests, Ms. Savage expressed excitement about making “all that background available to the American public.” She then commented on forthcoming hearings on big health data, with two four-hour public listening sessions. It was requested by the Executive Branch and is co-hosted with the ONC FACAs. Dr. Francis will present the community data privacy toolkit and other NCVHS activities. Ms. Savage said ONC is looking at “making do with the rules we already have,” and developing understanding and consensus around them. It has developed a privacy and security guide and a new security risk assessment tool for small practices.

In the discussion period, she said discussions of data provenance and data segmentation would be included in the forthcoming roadmap. A key message is that there are eight principles in Fair Information Practices, and “we have to work with the entire set” and build a system that accounts for all of them. Further, we have to think about all of the trade-offs in “the Rubik’s cube of rules” and the complexity of the rules environment, and how to preserve people’s rights while having the rules “adjudicated by computers instead of pieces of paper.”

Dr. Mays hailed ONC’s plans to hear about the issue of potential red-lining because this is a source of concern for minority communities regarding EHRs. Ms. Savage observed that “there is a pretty big difference when the community rises up to empower themselves with information than when people try to get it for them in a non-trusted environment. We have to take advantage of the wisdom that the experience of the communities brings to us.”

ACA Review Committee―Dr. Suarez (slides)

Dr. Suarez showed a schematic of the evolving functional relationships among NCVHS subcommittees, which now overlap and interact far more than in the past, and public and private entities with which NCVHS interacts. The recent designation of NCVHS as the ACA Review Committee has been assigned to the Subcommittee on Standards. The ACA Review Committee’s assignment is to evaluate the status of transactions and their standards, code sets, identifiers, and operating rules that have been adopted in regulations. He stressed adoption as the key distinction between the ACA Review Committee functions and those of the Standards Subcommittee; the Subcommittee looks at new and existing health care administrative transactions that have not yet been adopted in regulations, as well as dealing with population health standards and other standards-related topics. The charter of the Review Committee is posted on the NCVHS website.

The Review Committee will hold structured hearings at least biannually, in mid-year, to convene testifiers to talk about how things are going with different transactions and to allow public input. It may sometimes convene a workgroup or other task group. The Review Committee has identified a set of guiding principles for evaluating the effectiveness of adopted standards and operating rules, incorporating six pre-existing NCVHS guiding principles. (See meeting slides for details.) Its first task over the next six months is to establish an evaluation framework and developing baseline measures for existing standards and operating rules, with attention to guidelines and measures promulgated by other organizations such as ISO. The first ACA Review Committee hearing is planned for June 2015. The Review Committee will provide updates at every quarterly full Committee meeting.

In the discussion period, Dr. Cohen urged that the Committee “keep its eyes on the ultimate prize” regarding the ACA: improving individual and population health outcomes. This requires assessing data in terms of whether they help understand these outcomes. Dr. Mays urged that the Committee set aside planning time for all subcommittees and the Working Group to suggest metrics. These comments led to a discussion of the full Committee’s interest in looking more broadly at health care reform and whether it is meeting the goals set for it. Mr. Scanlon characterized this as “a convergence initiative,” in which the Committee can look at how the various data streams make it possible to evaluate the impact of ACA. This topic stimulated considerable interest and recurred throughout the two-day meeting. Members endorsed Ms. Kloss’ suggestion that the full Committee hold a structured, high level discussion of how to approach this task at the next meeting. She stressed that the impact on the cost burden should be part of the evaluation. On another subject, Dr. Stead noted the relevance of the NCVHS work on community data engagement and the Framework and of the new JASON Report.

Update on New Members―Mr. Scanlon

Mr. Scanlon reported that the Secretary is in the final stages of naming two new NCVHS members, and the Department will accelerate the naming of five new or reappointed members for the Spring term. He invited current members to send suggestions.

New Directions at the Agency for Health care Research and Quality (AHRQ)―Bob Kaplan, Chief Science Officer (slides)

After announcing that he is the new AHRQ liaison to NCVHS, Dr. Kaplan presented the new AHRQ mission statement: to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within HHS and with other partners to make sure that the evidence is understood and used. AHRQ’s activities include 11 Evidence-Based Practice Centers, the U.S. Preventive Services Task Force, the Medical Expenditure Survey (MEPS), and other programs including the Health Care Associated Infections Program. Most of its $476m budget is spent on research.

AHRQ is pivoting from what it used to do, comparative effectiveness research. Because of the establishment of the Patient-Centered Outcomes Research Institute (PCORI), funded by fees associated with health insurance plans, it is pivoting to patient-centered outcomes research that emphasizes dissemination and implementation, working with PCORI. The goal is to reduce the long delay between “when knowledge becomes known and when it gets implemented in practice.” Dr. Kaplan cited examples of evidence-based practices, including the Million Hearts Campaign. It is especially difficult to reach small practices, and AHRQ will soon award grants to small practices to help them do what the big practices are doing. It is also setting up three Centers of Excellence on system performance.

He then highlighted three topics in the AHRQ portfolio: harmonizing psychosocial measures for EHRs, MEPS, and HCUPS. In the first area, he acknowledged the influence of NCVHS members Dr. Mays and Dr. Stead. Dr. Mays held a series of hearings on harmonizing the collection of basic demographic information; and Dr. Stead co-chaired a recent IOM study on Capturing Social and Behavioral Domains and Measures in EHRs. (Dr. Stead presented the report later in this meeting.) Dr. Kaplan called the report a very important step forward and one he hopes will have a high impact. Next, he noted the particular relevance of MEPS and HCUP data for tracking the impact of the ACA. Finally, he said AHRQ expects to reengage in methodological research. Members welcomed Dr. Kaplan as the new AHRQ liaison to NCVHS.

Discussion

Dr. Stead hailed the new emphasis on dissemination and implementation, in view of communities’ desire for actionable information. He stressed that federal government should make it a priority to ensure that the data it is generating are useful and beneficial for communities. He expressed hope that AHRQ would include impacts on population health in its focus. Dr. Mays hailed the plans to engage in methodological research.

The CDC Surveillance Strategy―Chesley Richards, Deputy Director for Public Health Scientific Services (slides)

Dr. Richards is also Director of the CDC Office of Public Health Scientific Services. It has two centers, NCHS in Hyattsville and the Center for Surveillance, Epidemiology and Lab Services in Atlanta. CDC developed its surveillance strategy in consultation with many partners. The surveillance challenges include the siloed activities among its more than 120 surveillance activities; the slow adoption of new technologies and insufficient skilled workforce; and health information policy issues related to EHRs, Meaningful Use standards and interoperability requirements. State and local health departments tell CDC it has too many systems and requirements. On the other side, there are opportunities through more automated data use and analysis; improved interoperability; novel partnerships and collaborations; and a revolution in analytics, visualization, and communication in public health data and information.

The CDC vision is efficient systems that put the right data and information in the right hands at the right time in the right format to take effective public health action. Its Surveillance Strategy is focused on four issues: improving the availability and timeliness of data release, effective use of emerging information technology, correction or termination of ineffective or redundant surveillance systems, and maximizing the effectiveness of available agency resources. Dr. Richards described several initiatives designed to address these priorities, including electronic death reporting and the NNDSS Modernization Initiative. Four initiatives have 18-month deliverables. In addition, there is now a CDC Health Information Innovation Consortium (CHIIC), and nine small internal Surveillance Strategy Innovation Project grants have been awarded. (See slides and transcript for details.) At the policy level, CDC now has an ex officio seat on the HIT Policy Committee, and it has transmitted a report to Congress on data systems. The CDC Surveillance Leadership Board, led by Dr. Richards, evaluates key strategic decisions and actions and makes recommendations to the Director and senior leadership.

Discussion

Dr. Cohen stressed that states would love more direction and guidance from federal government to standardize and develop platforms for transmission of all vital events. He appealed for CDC to pay more attention to developing standards, and to work directly with the jurisdictions. Dr. Mays commented on the issues with mortality data on race and ethnicity and on the limitations of the National Violent Death Reporting System, which includes only 32 states.

Dr. Richards commented on the need to focus on a set of achievable goals in this initiative. He described some of the activities to encourage innovation, leverage the broader world of health data, and leverage the innovations taking place in major cities. He stressed that in the future, CDC should target its primary data collection resources to filling gaps. It has been working with AASHTO and public health partners on a cloud-based community platform where people can store their data in a standardized way.

Dr. Suarez stressed the importance of bidirectional communication of data, such as getting environmental data to providers at the point of care. Ms. Goss called attention to the “people dynamics,” and asked about the implications of the CDC initiatives for states and local communities. Dr. Richards described CDC’s efforts and plans to create opportunities for more shared learning and collaboration with states and communities, including bidirectional information exchange.

CDC is also aware of the need for training for local public health staff; his plan is to focus on training in place to help give state and local health departments the tools to leverage informatics in their population health work. He noted that while federal government lacks the resources to “fix everything,” it can demonstrate best practices and highlight innovations. Dr. Cohen described the findings from the recent NCVHS Roundtable on Community Data Engagement, and said NCVHS would like to be actively involved with CDC in developing strategies for providing “ubiquitous technical support at the community level.” In this vein, Dr. Kaplan cited the innovative “evidence-based advocacy” work of the late Rick Brown, who taught communities how to use the California Health Interview Survey.

Public Comment: Dr. Michael DeWaynes, Chief Public Health Officer for the American Optometric Association, called attention to ATSDR as one of CDC’s silos and suggested overlaying its datasets with other CDC datasets. Dr. Richards welcomed this idea.

Letter from Joint Public Health Informatics Taskforce―Dr. Suarez

Dr. Suarez gave background on a letter from the Joint Public Health Informatics Taskforce requesting improvement in public health surveillance systems. It was sent to the Health IT Policy Committee, the Health IT Standards Committee, and NCVHS, and suggested organizing a hearing or activity to focus on using health IT in outbreak management. Dr. Cohen suggested that any such activity be undertaken in partnership with CDC

Subcommittee on Standards―Dr. Suarez (slides)

In the discussion period, NCVHS members commented and made suggestions about aspects of the work plan. Dr. Mays suggested talking to APHA about public health standards and engaging SAMHSA in the work on behavioral health. Ms. Goss noted the overlaps among subcommittees with respect to transparency and suggested that the full Committee create a framework for the work in this area. Dr. Stead noted that some projects may need to be spread out over more than one year to be done properly, with careful attention to sequencing. Dr. Suarez said he would develop a matrix showing the work plans in all subcommittee domains. The discussion also reiterated the distinction between evaluating ACA standards and evaluating health care reform. The latter is the work of the full Committee.

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

There was particular discussion among members about how to approach the objective regarding HIPAA. Mr. Scanlon suggested waiting to assess that until after the Common Rule is revised. After wide-ranging discussion, Ms. Kloss observed that the topic seemed “ripe for dialogue,” and the Subcommittee would tee up another discussion for the full Committee. On toolkit dissemination, it is putting together a communication plan in consultation with the Working Group on Data Access and Use. Dr. Stead noted the potential contributions of a proposed community of practice around community data engagement and of the Framework project. Finally, the group discussed plans for a hearing on Section 1179. Some members proposed that fact-finding about the landscape should be the first step.

Public comment: Dan Rode, who is working with the Share to Care and Cure project, urged the Subcommittee to also look at the “blockages” to information exchange imposed by HIPAA privacy and security regulations. Steve Lazarus said he was part of a WEDI task group that looked at aspects of the Section 1179 issues.

Members then recessed, to return on day two.

―Day Two―

Subcommittee on Population Health―Drs. Cohen and Stead (slides)

In this session, the Subcommittee co-chairs presented the findings and possible actions ensuing from the October Roundtable on Supporting Community Data Engagement. Dr. Cohen noted that the Committee’s definition of “community” must clearly include persons and groups that are disenfranchised or hard to reach. The Roundtable brought together representatives of communities, data connector organizations, and data suppliers to talk about how their separate and combined efforts can support community data engagement. (See the Roundtable summary for details about the meeting.) A feedback tool circulated in advance by Subcommittee members generated 26 responses that were consistent with the Roundtable findings.

At the Roundtable, participants summarized their two days of discussions in terms of four priorities for supporting local efforts: 1) promoting community data literacy through user-centric approaches, 2) developing core sentinel indicators of local health and well-being, 3) aligning community data and support platforms, and 4) institutionalizing knowledgeable community voices in relevant government data decisions. Based on the Roundtable, the Subcommittee envisions these potential NCVHS actions: developing recommendations for the Secretary, establishing a community of practice, convening a roundtable on community data literacy, continuing development of the NCVHS Framework, and facilitating platform alignment. Dr. Stead outlined the current thinking about a letter to the Secretary, based on these findings and priorities. He and Dr. Cohen explained that some Roundtable ideas seem ready for NCVHS attention in the short run while others will require further study and consideration. He added that the broadening attention to all health determinants means that “this is much bigger than HHS” and brings together the whole government.

Discussion

Members offered comments and suggestions on these topics:

The challenge of maintaining any tools created by NCVHS, pointing to the need for such supports to be sustained in the HHS structure.
The privacy issues raised by communities’ call for more mental health data.
The need to be clear that “community” in the context discussed above often means knowledgeable data users in the community.
Encouragement for NCVHS to learn what is already going on in federal government and consult the agencies that work with the community before developing recommendations.
Idea of asking for a staff analysis of the strategic alignment already in place in HHS, to inform NCVHS planning.
Encouragement to be structured and strategic in developing actionable recommendations, with an eye to the HHS strategic plans.
Suggestion that the Committee focus on what is needed and depend on the Department to figure out how to do it.
The need for community-directed technical support and research to have a home within federal government, staffed by someone whose day job is to sustain them.
The need for an entire infrastructure to get this done.
Suggestion that the Secretary create an “uber entity,” perhaps at ASPE, that can do cross-cutting thinking on these topics and figure out how to fund new activities.
Encouragement to leverage opportunities to learn from and partner with philanthropies, universities, and libraries, where this kind of work is already under way.

This concluded the Population Health block. The rest of the meeting was a plenary session.

IOM Report: Capturing Social and Behavioral Domains and Measures in EHRs ―Bill Stead, IOM Committee Co-Chair (slides)

In introducing this briefing, Mr. Scanlon stated that there is a lot of interest in this Institute of Medicine (IOM) report and in having more social and behavioral information with which to improve risk adjustments and the quality of care.

Dr. Stead outlined the conceptual frameworks and models used; the six criteria developed for identifying candidate domains and measures; the process the committee used; and the resulting findings and recommendations. Starting from 31 measures in 17 domains, the committee constructed a parsimonious and complementary set of measures, with 12 measures in 11 domains which take 25 questions to assess. Those that were not selected set up the research agenda going forward. Top priority was given to alcohol use, race and ethnicity, residential address, and tobacco use and exposure, and the committee proposed the use of standardized ways of measuring them. Eight additional measures were also included. The report presents five sets of findings and recommendations and discusses implementation issues. (See slides for further details.) The full report can be downloaded at no expense: <iom.edu/ehrdomains2>.

OMB Guidance on Administrative Data Sharing―Dr. Queen

In February 2014, OMB sent a memo and guidance to the heads of all executive departments and agencies on providing and using administrative data for statistical purposes, in support of the strategic use of data within federal government to enhance statistical uses. This is not for open data for public access. It focuses on data that cannot be made publicly available but that could be used to supplement survey data. Part of the guidance was to help program agencies, in particular, think from the outset about the potential statistical purposes to which their administrative data could be put and set up their Privacy Act system of record notices accordingly. The OMB memo, which built on the Open Data Policy Memo and others, stimulated work to clarify and respond to it. Three key agency programs or units fall in the scope of the memo: statistical agencies, statistical components, and program agencies.

HHS has a long history of sharing administrative data for statistical purposes and linking records, so many mechanisms are already in place. There has been a lot of collaboration both within HHS and with Census. ASPE was asked to coordinate the Department’s response to the OMB memo, in collaboration with NCHS. The Data Council is convening the responses. A report was due last summer. OMB will use that information to inform them on the uses of the guidance and any needed revisions or technical assistance, with a timeline for future reporting.

In the discussion period, Dr. Cohen urged ASPE to provide the states and NAPHSIS with a summary and or a webinar on the OMB memo and guidance. Dr. Nichols stressed the priority of opening up access for all-payer claims databases to Medicare data, which has a lot of potentially useful information for communities. At Dr. Francis’ request, Mr. Scanlon said ASPE would share the OMB’s model data use agreement, though it is “probably overkill” for community use.

Briefing on the Working Group on Data Access and Use ―Dr. Mays and Damon Davis, HHS IDEA Lab

The Working Group’s purpose is to advise the Department on data access and use. Mr. Davis described the Department’s perspective on the topic and on this relationship. HHS is developing more robust data-related activities, and trying to make the data components behind its reports more usable and accessible and to help create feedback loops with users. The Working Group can be helpful in these efforts. He would like a Working Group representative to participate in Health Data Leads meetings, to get a sense of the Department’s activities and provide a sounding board.

Dr. Mays said the Working Group will meet with agency representatives to discuss and assess the readiness of their agencies to increase access and usability. Before doing so, it is developing guiding principles for making data accessible and usable. It has identified three user groups or use cases: data entrepreneurs; people with the skills to use data (researchers, health departments, et al.); and consumers. The Working Group aims to help agencies improve accessibility and usability of targeted datasets (not all) for these user groups, as appropriate. It is developing a set of standardized questions for the agency representatives with whom it will meet. It wants to be nimble and able to provide rapid feedback.

The Working Group also wants to help the NCVHS subcommittees with their agendas, and Dr. Mays invited requests and suggestions. It will work with the Subcommittee on Privacy, Confidentiality and Security on a communication plan for the toolkit. Dr. Cohen noted the alignment between the Working Group’s interest in assessing dissemination and the Population Subcommittee’s interest in data access and use for communities. Dr. Suarez suggested developing metrics for measuring usability.

Committee Priorities and Plans

The group spent the final minutes of the meeting reviewing Subcommittee plans and directions and considering staging, band width, and alignment, using a draft NCVHS-wide work plan drafted by Dr. Suarez. They agreed to discuss a strategy for an ACA evaluation in February, and to ask for an assessment of staff capability. Dr. Cohen made an appeal that the Committee think about “the big ideas to help drive us down the road” and pursue proactive engagement with ONC, IOM, FACAs, and other entities. The group was reminded to take advantage of the criteria developed in the past for selecting and prioritizing NCVHS projects. Mr. Scanlon suggested starting the planning for an ACA evaluation with an overview from HHS on how it is approaching this.

Public Comment: Mr. Lazarus said that CAQH would like the metrics that will be used to evaluate the ACA published so the public can comment.

Final Comments

Mr. Scanlon expressed gratitude to Dr. Green and Dr. Francis, on behalf of the Department, for their eight years of service on the National Committee. All present responded by giving them a standing ovation.

Dr. Francis expressed her gratitude to NCVHS, and acknowledged all she had learned and the friendships she had formed during her years of service.

Dr. Green likened NCVHS membership to taking a graduate course―one in which some learning and growth come with pain. He acknowledged the contributions of past NCVHS Chairs and of fellow NCVHS members, from all of whom he has learned; and he reminded colleagues not to lose track of the Committee’s 63 year trajectory and its many significant products. After noting a few things he had learned, he urged the Committee to “intensely on-board new members,” and to sustain the nascent linkages with ONC, CMS, philanthropies, and other current or potential partners.

Ms. Jackson concluded the meeting by acknowledging the efforts of NCVHS staff in preparing for and supporting this meeting.

With that, Mr. Scanlon adjourned the meeting.