Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

February 28-March 1, 2013

Hubert Humphrey Building, Washington, D.C.

Meeting Minutes


The National Committee on Vital and Health Statistics was convened on February 28-March 1, 2013, at the Hubert Humphrey Building in Washington, D.C. The meeting was open to the public. Present:

Committee members (* new)

  • Larry A. Green, M.D., Chair
  • Lynn A. Blewett, Ph.D.*
  • John J. Burke, MBA, MSPharm.
  • Raj Chanderraj, MD, FACC
  • Bruce Cohen, Ph.D.
  • Llewellyn Cornelius, Ph.D.*
  • Leslie Pickering Francis, J.D., Ph.D.
  • Alexandra Goss*
  • Linda Kloss, RHIA, CAE, FAHIMA
  • Vickie Mays, Ph.D., MSPH
  • Sallie Milam, J.D., CIPP/G
  • Len Nichols, Ph.D.
  • William J. Scanlon, Ph.D.
  • W. Ob Soonthornsima
  • William W. Stead, M.D.*
  • Walter Suarez, M.D.
  • Paul Tang, M.D., MPH

Absent:

  • James Walker, MD, FACP

Lead Staff and Liaisons

  • Marjorie Greenberg, NCHS, Exec. Secretary
  • James Scanlon, ASPE, Exec. Staff Director
  • Michael Fitzmaurice, Ph.D., AHRQ liaison
  • Justine M. Carr, M.D., Working Group Chair
  • Ed Sondik, Ph.D., Director, NCHS
  • Judy Murphy, R.N., ONC liaison

Others

  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Kassi Webster, NCHS
  • Virginia Cain, NCHS
  • Dan Rode, AHIMA
  • Kelley Turek, AHIP
  • Lauren Fleeger, VA
  • Peter Barto, PUC
  • Susan Kanaan, consultant writer

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


EXECUTIVE SUMMARY

Dr. Green, Ms. Greenberg, and Mr. Scanlon began by welcoming new NCVHS members (marked * on the attendance list above). No official actions were taken at this meeting.

Departmental Briefings

  • ASPE – Jim Scanlon

Mr. Scanlon reported that in the event of sequestration, HHS and all agencies will be affected but no personnel actions are anticipated that would affect the NCVHS full Committee. The Department is now preparing to implement and monitor the impact of health care reform, and is improving its data resources for that purpose. New projects include one on micro-simulation and small area data and one to develop a data strategy and identify major data gaps. The Department is looking at possible uses of technology to improve data quality, turnaround, and availability.

  • CMS – Denise Buenning (slides)

Ms. Buenning briefed the group on transaction and code sets, operating rules, the health plan identifier, and ICD-10 code set implementation at CMS. Much of CMS’s recent work has focused on section 1104 of the Affordable Care Act (ACA), related to administrative simplification. She stressed that the agency’s overarching focus is on alignment, and every project is viewed in this context. She predicted growing alignment and synergy among LOINC, SNOMED, ICD-10 code sets, EHRs, and Meaningful Use.

  • ONC Program Update – Judy Murphy, RN, FACMI, FHIMSS, FAAN (slides)

Ms. Murphy reported on ONC’s work on Meaningful Use; EHR incentive payments and adoption; health information exchange; late-stage activities with Beacon Communities; workforce training; consumer e-health; certification; e-quality measures and quality improvement tools; standards and interoperability; the redesigned HealthIT.gov website; and projects under Challenge.gov.

  • ONC Privacy and Security Briefing – Scott Weinstein

Mr. Weinstein said the Office of ONC’s Chief Privacy Officer works primarily on policy development, programmatic support, and research and policy implementation in conjunction with several government and federal advisory committees and groups. One area concerns query and response for health information exchange; another is patient consent and data segmentation; and a third is standards. One ONC initiative is to figure out a way to implement disclosure policies in conjunction with the work on data segmentation. Others include an eConsent project; a security game training project for providers; and a webpage and projects on mobile devices.

  • Office of Civil Rights Briefing – Susan McAndrew, J.D. (slides)

Ms. McAndrew hailed the January 25 publication of the Omnibus Final Rule, implementing a number of provisions of the HITECH Act. Its inclusion of many provisions helps align implementation dates for covered entities and relieves burden on regulatory processing pipelines. She outlined the rule’s key features and contents. OCR took the opportunity to try to align how the privacy rule works with informed consent and the Common Rule, and it makes it easier to use a single authorization form for multiple research purposes. The business associate requirements are one of the bigger areas of change. The final rule is effective March 26, 2013, with a compliance date of September 23, 2013. Finally, she described OCR’s outreach efforts about the rule.

Subcommittee Reports

Dr. Green explained that the purpose of the next series of presentations is for members to hear and discuss the directions the subcommittees are headed, with attention to overlaps and synergies. He reminded the group of the overarching NCVHS themes identified by the Executive Subcommittee: standards, the community as a learning health system, and convergence. There was group discussion following each presentation.

  • Subcommittee on Population Health: Supporting Health Data Needs for Community-Driven Change – Dr. Cohen (slides)

This Subcommittee and the Subcommittee on Privacy, Confidentiality and Security will host a workshop (named above) on April 30-May 2, featuring expert speakers and small group discussion. On this basis, they plan to develop recommendations to the Secretary and possibly a report. In addition, the planners have developed questions to solicit input prior to the meeting from communities and data experts about local data use and issues, to inform discussion at the meeting. Subcommittee members and staff also are planning a session on the same topics for the APHA meeting in November. Dr. Cohen commented on the findings of a preliminary environmental scan of resources and programs that currently support community data use around the U.S. (presented by Ms. Kanaan on day two of this meeting). He highlighted the NCVHS role of leveraging Federal involvement to promote partnerships and provide resources and support to communities.

  • Subcommittee on Privacy, Confidentiality and Security – Recent Activities and Future Directions: Environmental Scan – Dr. Francis and Ms. Kloss (slides)

Dr. Francis reviewed recent Subcommittee activities and said that trust, education, engagement, and innovation are key issues along with the expansion of health information use and reuse in non-health contexts. She described its December 2012 NCVHS letter to the Secretary, proposing elements for a stewardship framework for community health data use and identifying high-priority areas for resource development. This work has informed what it is looking for from the forthcoming workshop and request for information. On that basis, it hopes to produce a useful resource for communities.

  • Subcommittee on Standards: Status and Hearing – Dr. Suarez and Mr. Soonthornsima (slides)

Dr. Suarez said that over the next few months, the Subcommittee will develop recommendations based on what it heard at a February 27 hearing on attachment standards and operating rules. It also held a roundtable to enable leaders with diverse perspectives to discuss the future of information exchange between providers and payers, and it is considering holding another one. He gave an overview of attachments issues and background, and summarized the content and findings from the recent hearing. In view of new technologies, the Subcommittee is considering whether the term and concept of “claim attachments” is appropriate since it perpetuates a false distinction between administrative and clinical data. He called this a “unique opportunity” to recognize the convergence of information for different purposes. Mr. Soonthornsima added that this is a strategic opportunity for NCVHS to look for opportunities to influence policy in a direction that reduces pain points for the industry.

  • Subcommittee on Quality – Dr. Tang

Dr. Tang praised the Committee’s new emphasis on convergence, which he noted is also seen in the quality measurement space, and he noted the merits of SNOMED for understanding the health of individuals in populations. He then proposed that the emphasis had recently “flipped” toward populations – i.e., averages and aggregates – at the risk of losing sight of the individuals who make up populations. To get the desired patient engagement, he suggested, it will be important to personalize quality measures, care, and health around the individual. He wondered how measures can meaningfully keep both individuals and communities in view and benefit both.

Conversation with Dr. Ed Sondik, Director, National Center for Health Statistics

Dr. Sondik began by assuring members of the continuing support of NCHS as the Committee transitions to the retirement of Ms. Greenberg as Executive Secretary later this year. He encouraged the Committee to have regular presentations from NCHS, to help support the integration of HHS data activities. He outlined the status of NCHS programs and some of the challenges it faces, particularly related to surveys.

In recognition of Dr. Sondik’s impending retirement, Ms. Greenberg spoke of his illustrious career and strong support of health statistics, the use of data for health policy, and NCVHS.

Working Group on HHS Data Access and Use – Justine Carr, MD, Chair (slides)

Dr. Carr reviewed the Working Group’s charge – essentially, to advise HHS and facilitate access to expert opinion and public input on improving access to and innovative use of HHS data. It divided its work into supply-side and demand-side “streams” and first reviewed the available HHS data sets and supply-side issues. Now it is looking at the demand side to understand the range of data users, uses, gaps and opportunities, including the perspectives of developers. Defining the gap between supply and demand and devising strategies to bridge it is the group’s ongoing work, along with stimulating innovative uses and broad diffusion. The Working Group plans to participate in the June 2013 Health Datapalooza.

Follow-up on Empowering Communities – Dr. Cohen, Ms. Kanaan (slides)

Ms. Kanaan summarized her preliminary scan of the types and leading examples of no-cost resources now available to communities to support their health projects and programs. The scan, an internal NCVHS report, was designed to help NCVHS identify how it can make the greatest contribution in this area and its potential partners in the endeavor. An overarching finding is that an embryonic infrastructure is taking shape with characteristics of the national infrastructure NCVHS envisioned in its 2011 report on the community as a learning system. The scan and interviews also identified gaps in the availability of hands-on technical assistance, understanding of data stewardship, and the best ways to leverage a combination of health status and social determinant data. In addition, it highlighted a potential role for NCVHS in connecting federal data liberation efforts and the evolving resources available to communities.

Dr. Cohen added that government has a role in providing resources to help stimulate community-driven change and reinforce community assets. “This is a huge new frontier,” he said. The next one is to figure out how to get to the more actionable neighborhood level of geography.

HHS Health System Measurement Project – Susan Queen, Ph.D. (slides)

https://healthmeasures.aspe.hhs.gov

Dr. Queen introduced the Health System Measurement Project (HSMP), a new web-based tool designed to provide a high-level overview of the U.S. health care system. Mr. Scanlon explained that it is primarily intended as a dashboard for measuring health systems change, with current data serving as the baseline. The website provides data on up to 50 indicators, descriptions, various visualizations, and data links for ten critical dimensions of the system. The measures come from Federal agencies within and outside HHS and a few non-Federal sources. She showed screen shots from the website and gave examples of how it can be used.

HHS has conducted usability testing on site functionality, and will soon do focus group testing on different users and audiences. It is considering various enhancements and new measures and data sources for the future. Dr. Queen added that she wants to work with the Working Group to help optimize the site, and she asked for the Committee’s help in raising awareness of its availability.

Final Comments – Dr. Green, Members and Staff

Dr. Green asked Ms. Jackson and Ms. Greenberg to create a work plan for the rest of the year based on the discussions during this meeting, for vetting by the Executive Subcommittee. He then invited members and others to offer comments. (They are summarized in the detailed minutes, below.)


DETAILED SUMMARY

– Day One –

Welcome, Opening Remarks – Dr. Green

Dr. Green and Ms. Greenberg began the meeting by welcoming new NCVHS members. Following introductions, Dr. Green commented on the effort under way to integrate the work of NCVHS subcommittees in a way that supports the convergence taking place internally and in the broader environment. The theme of the community as a learning health system is a major focus of this meeting. The meeting agenda also reflects an effort to further integrate the work of NCVHS with that of the new Working Group on Health Data Access and Use.

HHS Update – Jim Scanlon

Mr. Scanlon added his welcome to new and returning members on behalf of the Secretary, and noted that the Committee now has liaisons from most HHS agencies. On HHS programs, policy, and planning, he said the Department would maintain continuity in all of its policy programs of the last four years, and it is updating its strategic plan for the next four years. He commented on several HHS initiatives, noting that the Department generally sets quantifiable goals so it can measure the progress of its initiatives. On this the eve of possible sequestration, he noted that HHS would be affected like every federal agency; but no personnel actions are anticipated that would affect the NCVHS full Committee.

A major HHS focus at present is implementing and preparing to monitor the impact of health care reform. He detailed the improvements to its data resources for that purpose. Besides enhancing surveys and administrative data, there is attention to data collection standards – notably, on several demographic items. Dr. Queen will later report on the new Health Systems Tracking Project, which was developed by consensus groups to monitor progress in 10 areas. A guide to HHS major surveys and data systems has been posted on the Data Council website. New projects include one on micro-simulation and small area data and one to develop a data strategy and identify major data gaps. The Department is looking at how it can use technology to improve data quality, turnaround, and availability. The strategy also addresses integration and alignment of advances in surveys, public health research, administrative data, and EHR technology to benefit population health. And the Department remains committed to the Health Data Initiative.

Discussion

Committee members had questions and comments on maximizing the impact of health insurance exchanges; training admitting clerks and intake workers to collect socio-demographic data; and using YouTube videos as training tools.

CMS Briefing – Denise Buenning (slides)

Ms. Buenning briefed the group on transactions and code sets, operating rules, the health plan identifier, and ICD-10 code set implementation at CMS. She said the shift from paper to electronic transactions has already saved the health care industry $23 billion, and an additional $29 billion in savings is estimated once electronic use is complete. This outcome depends on government and industry working together. The future of e-health is the alignment of administrative simplification, meaningful use, HIPAA, and other areas of concern to create a better health care system that addresses the needs of providers and patients.

Much of CMS’s recent work has focused on section 1104 of the Affordable Care Act (ACA), related to administrative simplification, which is key to reducing the cost of health care. She summarized the status and timeline with respect to operating rules for eligibility and claim status, the health plan identifier, standards for electronic funds transfer, operating rules for EFT and electronic remittance, ICD-10 code sets, claims attachment standards, health plan certification, and other activities. Again, the overarching focus is on alignment, and every project is viewed in this context.

Turning to standards testing and compliance, she noted the need for consensus on the meaning of “end to end testing.” CMS hopes to tee up discussions about this in front of NCVHS; and it is working on two pilots to develop protocols for standards, focused at “opposite ends of the spectrum.”

Discussion

Members had questions on the framing and status of several specific CMS projects. Ms. Buenning said the Committee can expect to see greater alignment and synergy among LOINC, SNOMED, ICD-10 code sets, EHRs, and Meaningful Use.

ONC Program Update – Judy Murphy, RN, FACMI, FHIMSS, FAAN (slides)

Ms. Murphy began with a Meaningful Use update on the professionals and hospitals now registered and paid under the program. With nearly 75 percent paid, hospitals are doing much better than professionals. She showed a graph on the healthIT.gov dashboard with total EHR incentive payments to all eligible providers since January 2011, showing a steep upward curve. There are also breakdowns of adoption by state. A priority for health information exchange is to get patient-centered health data moving, and she showed data on the status in this area. There is progress on standardized data exchange, but some dimensions are lagging and will be stepped up in stage 2. E-prescribing, in contrast, is doing very well, while query-based exchange is more complicated.

Turning to Beacon communities, she noted some featured successes in the communities and the effort to clarify the lessons learned in this final year of funding. Workforce training programs are also winding down, with a new emphasis on identifying the desired competencies of informatics-trained individuals.

In addition to interoperability, patients’ engagement in their health was a big focus for ONC this year, and PBS did an hour-long special on this topic. The work on consumer eHealth is organized around access (via the Blue Button), action, and attitudes. In overall policy and planning, ONC has issued final rules for Meaningful Use Stage 2 and the 2014 edition of standards and certification criteria, and closed the comment period on meaningful use stage 3. The comments have been turned over to the Meaningful Use Workgroup, chaired by Dr. Tang. Ms. Murphy commented on the importance of training to promote standards harmonization. Comments on the health IT patient safety action and surveillance plan are now being compiled. On governance of health information exchange, ONC is using a “non-regulatory approach.” She also commented briefly on prescription drug monitoring programs, certification, e-quality measures, and QI tools, noting that there is a big effort to align the measures and automate the process for looking at the measures in stage 2.

Finally, there are 12 streams of work in ONC’s standards and interoperability efforts; and the ONC website, HealthIT.gov, has been redesigned. She also called attention to challenge.gov, including the results of a redesign challenge to create a mobile app for accessing CMS data.

Discussion

Members had questions and comments on the idea of a naming authority for standards harmonization; the idea of a mappable central repository of reference data; the sustainability of HIE organizations and regional extension centers after funding ends; and the desirability of integrating SNOMED into the development of new quality measures. Ms. Murphy said that in her view, SNOMED and ICD-10 code sets are “inextricably linked.” She welcomed Ms. Kloss’ suggestion that the Committee look at opportunities to coordinate versions of all the code sets to support harmonization. Dr. Fitzmaurice suggested collecting success stories and developing a job bank as part of the workforce development initiative.

ONC Privacy and Security Briefing – Scott Weinstein

Mr. Weinstein spoke on behalf of Joy Pritts, ONC’s Chief Privacy Officer. The position was created by the HITECH Act, with duties in this area that include advising the National Coordinator, coordinating with other federal and state agencies, and participating in international efforts. The work is mainly in three areas: policy development, programmatic support, and research and policy implementation. The office works with several government and federal advisory committees and groups, which he enumerated.

One area of activity relates to query and response for health information exchange. The Privacy and Security Tiger Team is developing recommendations around response, aiming to reduce real and perceived barriers to responding to requests for clarification. In addition, in the Stage 3 request for comments (RFC), questions were posed about patient consent and data segmentation, with 74 responses, which Mr. Weinstein summarized for the Committee. One question related to how Meaningful Use can be leveraged to improve the capacity of the EHR infrastructure to record consent. The third concerned existing standards to facilitate exchange of consent information.

Mr. Weinstein briefed the Committee on an ONC initiative to figure out a way to implement disclosure policies in conjunction with the work on data segmentation. It was designed based on recommendations from NCVHS and PCAST. Another initiative, the eConsent project, is developing ways to educate patients about their choices with respect to exchanging health information electronically, with pilots in four facilities. ONC has also worked on a security training game to help providers understand their obligations, and it has a web page on healthit.gov on the use of mobile devices. It is also conducting focus groups with consumers on reading the HIPAA notice, and is also doing surveys to look at consumer attitudes toward privacy and security and health IT. He noted that “mobile is huge” with consumers, and growing rapidly. The key takeaway in this area is that consumers do have privacy and security concerns, they are interested in their information being safeguarded, and they make case-by-case determinations on whether to use an application.

Discussion

Members had questions and comments about protecting sensitive data as behavioral health is integrated into primary care; issues associated with data collection using tablets; segmentation within health care systems and the need for universal exchange language; provenance issues; genetic information; cloud applications; and how NCVHS can be helpful to ONC’s work on privacy and security.

Office of Civil Rights Briefing – Susan McAndrew, J.D. (slides)

Ms. McAndrew’s headline is that the Omnibus Final Rule implementing a number of provisions of the HITECH Act was published on January 25. The inclusion of many provisions helps align implementation dates for covered entities and relieves burden on regulatory processing pipelines. She outlined the rule’s key features and contents. For example, new to consumers is the right to get an electronic copy of information held in electronic form by the covered entity. Also, covered entities are prohibited from selling protected health information without the individual’s authorization. Similarly, marketing was tightened, and an easy way is provided to stop fundraising communications. The rule also implements privacy protections for genetic information (GINA provisions), and there is an enforcement track for prohibitions to using genetic information for underwriting purposes. There also are non-statutory provisions related to student immunization, research, notice of privacy practices, and decedent information. OCR took the opportunity to try to align how the privacy rule works with informed consent and the Common Rule, and the rule makes it easier to use a single authorization form for multiple research purposes.

The business associate requirements are one of the bigger areas of change, as business associates are now required to comply with the same security standards and disclosure requirements as the covered entity. There are also changes in breaches and enforcement provisions, which Ms. McAndrew outlined. She reviewed the dates associated with the final rule, which is effective March 26, 2013, with a compliance date of September 23, 2013. Finally, she described OCR’s outreach efforts, including various forms of guidance and sample business associate language posted on its website. It is updating its fact sheets for consumers and will soon post those in seven languages.

Discussion

Members commended Ms. McAndrew for her concise summary of the 500-page Rule. They had questions and comments about NCVHS help in the area of accounting for disclosures; the status of allowing labs to disclose results directly to patients; determining how to value privacy harm for penalties and whether NCVHS can help; and the impact on care management of defining plans and integrated health care systems as insurers for the purposes of the Final Rule. Ms. McAndrew said she would value input from NCVHS on models and practical ways to value privacy harm. She added that OCR and the White House are looking at the impact of privacy rules on the ability to report individuals reported under gun control statutes as being ineligible to purchase a gun. OCR will issue an NPRM on this subject.

In conclusion, Dr. Green expressed gratitude to the presenters for being there in person to deliver and discuss their highly substantive reports. Ms. Greenberg acknowledged Ms. Jackson’s work to enlist participation from Departmental representatives and plan an effective agenda.

Introduction to Subcommittee Reports

Dr. Green explained that the purpose of the next series of presentations is for members to hear and discuss the directions the subcommittees are headed, with attention to overlaps and synergies. He reminded the group of the overarching NCVHS themes identified by the Executive Subcommittee: standards, the community as a learning health system, and convergence.

Subcommittee on Population Health: Supporting Health Data Needs for Community-Driven Change – Dr. Cohen (slides)

Dr. Cohen noted that the Spring workshop named above, which his Subcommittee will host with the Subcommittee on Privacy, Confidentiality and Security, integrates all three NCVHS themes in the context of community-driven change. The April 30-May 2 workshop will feature expert speakers as well as small group discussion of three themes: 1) How do communities collect and compile data? 2) How do they use data and incorporate them into priority-setting and decision-making to create change? 3) How do we promote information-enabled community-driven change? On this basis, they plan to develop recommendations to the Secretary, and possibly also a report.

In addition, the planners have developed questions to solicit input from communities and data experts prior to the workshop about local data use and issues, to inform discussion at the meeting. Members and others will send out the request for information electronically to their respective lists soon. Subcommittee members and staff also are planning a session on the same topic for the APHA meeting in November, which Dr. Mays and Nancy Breen will moderate. The content will include presentations and group discussion of the nature and functions of a learning system for health; ideas for an infrastructure to provide support, facilitate shared learning, and create economies of scale; data as public goods; and NCVHS and Federal roles.

Ms. Kanaan will report on day two on her preliminary environmental scan of resources and programs that currently support community data use around the U.S. Based on the scan, Dr. Cohen observed that much secondary data can be accessed online today; the challenge for communities is what data to use and how to use them. Technical assistance is not universally available; and an important function of local data is to start conversations that lead community members to engagement and action. A focal NCVHS role is to leverage Federal involvement in promoting partnerships and providing resources and support to communities.

Discussion

The group discussed the possibility of hosting an NCVHS “sidebar meeting” in conjunction with the APHA meeting.

Dr. Carr encouraged the subcommittees to tie their new work to, and build on, the 2011 NCVHS report, The Community as a Learning System for Health, in particular the thinking about the federal role. Ms. Greenberg pointed out the relevance of the 2002 NCVHS schema of the influences on the population’s health, reproduced in the 2011 report.

Dr. Green encouraged the subcommittees to have an end point and deliverables in mind, with a plan to conceptualize a letter to the Secretary in June, for action in September. Alternatively, the group considered deferring final action on a letter until November in order to incorporate feedback from the APHA meeting.

Subcommittee on Privacy, Confidentiality and Security – Recent Activities and Future Directions: Environmental Scan – Dr. Francis and Ms. Kloss (slides)

Dr. Francis began by reviewing recent Subcommittee activities. To aid its planning process, the Subcommittee identified nine key stakeholders and nine contemporary issues in its area of concern. Trust, education, engagement, and innovation are among the key issues, along with the expansion of health information use and reuse in non-health contexts. The Subcommittee held a hearing in April 2012 that led to a December 2012 NCVHS letter to the Secretary proposing elements for a stewardship framework for the use of community health data, with four recommendations. It identified high-priority areas for resource development including examples and case studies, data use agreements, and methods of transparency and community engagement.

In the forthcoming joint workshop and request for information feedback, the Subcommittee is interested in any models and best practices regarding community data use. On this basis, it hopes to produce a useful resource for communities. Dr. Francis concluded by observing that “if you are interested in using data, you have to be interested in protecting it, too.”

Discussion

Dr. Mays commented that the interests of the two hosting subcommittees suggest different types of desirable workshop participants, with different levels of sophistication and experience in wrestling with stewardship questions. Ms. Kloss responded that the agenda should allow for a range of perspectives.

Dr. Green observed that the workshop may generate a report as well as a letter to the Secretary. Ms. Greenberg expressed hope that the findings from the workshop could be combined in a single letter; promising models and practices could be described in another document. Dr. Carr encouraged the planners to have their destination in mind as they plan the workshop. Dr. Cohen proposed that YouTube videos might be a useful product for communities, and he urged his colleagues to “think creatively” about their work product(s). Regarding the target audience, Mr. Scanlon said the Secretary is its first, though not its only, client, and NCVHS should always inform the Secretary of its findings.

Subcommittee on Standards: Status and Hearing – Dr. Suarez and Mr. Soonthornsima (slides)

The topics on which the Standards Subcommittee works include standards and operating rules for claim attachments and other transactions. It receives an annual report from Designated Standards Maintenance Organizations, listens to industry, and monitors the implementation of standards, codes, identifiers, and operating rules as well as plans for upcoming compliance. The Subcommittee also reports to Congress on HIPAA implementation. Over the next few months, it will be deliberating and developing recommendations based on its findings from a February 27 hearing on attachment standards and operating rules. It also held a roundtable for leaders with diverse perspectives to discuss the future of information exchange between providers and payers, and is considering holding another one.

Dr. Suarez gave an overview of attachments issues and summarized the content and findings from the recent hearing. He noted that the topic is critical for timely and high quality patient care. The Triple Aim and HITECH have pushed things in this direction, and the ACA requires a final rule by January 1, 2014. However, in view of new technologies, the Subcommittee is considering whether the term and concept of “claim attachments” is appropriate, since it perpetuates a false distinction between administrative and clinical data. He called this a “unique opportunity” to recognize the convergence of information for different purposes. Finally, he gave further details on the February 27 hearing, which was very valuable.

Mr. Soonthornsima shifted the perspective to “65,000 feet” and noted that the multitude of initiatives under way may result in sub-optimal achievements for each one unless convergence is stressed. This is a strategic opportunity for NCVHS to look for opportunities to influence policy in a direction that reduces pain points for the industry. He said it was clear in the hearing that the SDOs and operating rules entities are coming into alignment, and there was agreement that “this is no longer about claims.” Other themes included the importance of education and awareness, prioritization, and a roadmap.

Finally, Dr. Suarez announced that WEDI has convened an Executive Steering Committee chaired by former Secretary Louis Sullivan to look at ways to build the new roadmap to guide the next generation of healthcare information exchange. The Subcommittee hopes to work with them.

Subcommittee on Quality – Dr. Tang

Dr. Tang praised the new “convergent way” that NCVHS is conducting its business and noted that the same trend is happening in the quality measurement space, where traditional ways of looking at data, measures, and sources are no longer considered adequate. After an appeal for “rational choices,” he highlighted two cross-cutting themes. First, he stressed the merits of SNOMED for understanding the health of individuals in populations; second, he asserted that the emphasis had recently “flipped” toward populations – i.e., averages and aggregates – at the risk of losing sight of the individuals who make up populations. To get the desired patient engagement, he suggested, it will be important to personalize quality measures, care, and health around the individual. He wondered how measures can meaningfully keep both individuals and communities in view and benefit both.

Dr. Cohen suggested that the Committee give further consideration to Dr. Tang’s question about how to combine a focus on individual wellness and the quality of community life.


– Day Two –

Dr. Green welcomed Ed Sondik, Ph.D., Director of the National Center for Health Statistics (NCHS).

Conversation with Dr. Sondik

Dr. Sondik began by assuring members of the continuing support of NCHS as the Committee transitions to the retirement of Ms. Greenberg as Executive Secretary later this year. He stressed the importance of the Committee to NCHS and the Center’s importance as the designated federal statistical agency that focuses on health. He encouraged NCVHS to reserve time periodically to hear from the Center, which will help support data integration efforts across the Department. Further, the Department’s other advisory committees – e.g., those to NIH and CDC – should get to know NCVHS more, and they all should coordinate their work.

He said NCHS has never had as large a budget as it does now, reflecting the Department’s strong support for data. It is prepared for “draconian cuts,” if it comes to that because of the sequester. He described the status of NCHS programs – the National Health Interview Survey, NHANES, health care surveys, and vital statistics – and outlined the challenges it faces, particularly related to surveys. NCVHS guidance will be welcome as the Center addresses such challenges and considers options, including learning from current practices such as crowd-sourcing.

Asked by Dr. Green about his impending retirement, Dr. Sondik said his family had persuaded him to “reprioritize.” Dr. Charlie Rothwell, now head of the Vital Statistics Division, will take over on April 1 as Acting Director, and there will be a search for a new Director.

Ms. Greenberg expressed great appreciation for Dr. Sondik’s illustrious career and his strong support of health statistics, the use of data for health policy, and the Committee. She agreed that NCVHS should have more frequent reports from NCHS, as well as reactivating a CDC liaison. She added that NCVHS and ONC’s FACAS are starting to collaborate on joint projects, which can serve as a model for relationships with other advisory committees.

NCVHS members then gave Dr. Sondik a standing ovation.

Working Group on HHS Data Access and Use – Justine Carr, MD, Chair (slides)

Dr. Carr called attention to this unique and significant moment in time when both Dr. Sondik and Ms. Greenberg, “the bedrock of all that we’re working on,” are preparing to retire.

She then reviewed the Working Group’s charge – essentially, to advise HHS and facilitate access to expert opinion and public input on improving access to and innovative use of HHS data. The Working Group divided its work into supply-side and demand-side “streams” and first reviewed the available HHS data sets and supply-side issues. Dr. Queen provided an inventory of HHS data sets and their uses for this purpose. Now it is looking at the demand side to understand the range of data users, uses, gaps and opportunities, including the perspectives of developers. Defining the gap between supply and demand and devising strategies to bridge it is the group’s ongoing work, along with stimulating innovative uses and broad diffusion. In the latter vein, the Working Group will participate in the June 2013 Datapalooza. It is also looking for sustainability models for new innovations in this area.

Dr. Carr welcomed Lily Bradley of ASPE as the new lead staff to the Working Group.

Discussion

The group discussed plans for the Datapalooza with Dr. Sondik, who is leading a session on community health data. He said the important question for him is what difference the data and technology tools make.

Dr. Tang queried Dr. Sondik on the prospects for using electronic media to supplement current Federal survey approaches, given the decline in response rates. Dr. Sondik said NCHS is “very receptive” to new approaches, which would be vetted by its Board of Scientific Counselors. He invited NCVHS to help lay out a direction. Mr. Scanlon later agreed, adding that HHS has pilot studies to look at new technology and sources of population health data.

Several Working Group members offered comments. Mr. Davenhall noted that a new 501c3, the Health Data Consortium, has been formed to give a permanent home to the Datapalooza and the activities it spurs. Dr. Vaughan observed that Dr. Sondik’s session last year provided a place for public health people to gather. She called attention to the presence in this space not only of business people but also of civic and social entrepreneurs and government people at all levels, and she urged that efforts be made to bring the latter groups forward. Dr. Kaushal noted that the Health Data Initiative has been effective in bringing together a “demand-side ecosystem” composed of public health professionals, innovators, and investors, and the Working Group should coordinate with them. Mr. Crowley added that connecting the supply and demand sides can be facilitated by a more socially-enabled network, Web assets, and infrastructure. Dr. Cohen observed that the users and uses of publicly available data have changed enormously in recent years; the sweet spot for the Working Group is helping the federal government respond to these changes. Dr. Francis stressed the shifting conditions for public trust in data use and the need to build new trust relationships in this environment. Dr. Suarez proposed having discussion of the meaningful standardization of information and mechanisms for collecting, disseminating and analyzing data.

Finally, in response to questions, Ms. Greenberg commented on what financial support will be available for Datapalooza participants from the Committee and Working Group.

Follow-up on Empowering Communities – Dr. Cohen, Ms. Kanaan (slides)

Ms. Kanaan gave an overview of her preliminary scan of the types and leading examples of the no-cost resources now available to communities to support their health projects and programs. The scan, an internal NCVHS report, was designed to help NCVHS identify how it can make the greatest contribution in this area and its potential partners in the endeavor. In addition to interviewing or having email communication with six informants from leading organizations in this space, she gathered information on 13 programs through Web-based research and discussion with informants.

The primary types of programs helping communities use local data include broad-based national resources and/or platforms, state-level programs, federal grant programs, and professional caucuses. She stressed that this project was “an initial reconnaissance to see what’s out there.” It generated three products: findings and observations, descriptions of the 13 programs, and a summary table.

An overarching finding from the scan is that an embryonic infrastructure is taking shape with characteristics of the national infrastructure NCVHS envisioned in its 2011 report on the community as a learning system. Ms. Kanaan suggested that the Committee map its earlier infrastructure recommendations to what is available today to identify gaps. She also encouraged the Committee to collaborate with the organizations in this field, identifying what can be learned from colleagues and where NCVHS guidance might be useful.

Three themes related to the purposes of community data use emerged from the telephone and email conversations. First, data are being used for social action and community-driven change. This highlights the importance of information on policy and the social determinants of health. Second, leading-edge communities are thinking in terms of local assets, not just local problems. Finally, some organizations are working to foster a national movement for community health and well-being, thus adding a national dimension to the story.

The scan and interviews also identified gaps in the availability of hands-on technical assistance, understanding of data stewardship, and the best ways to leverage a combination of health status and social determinant data. It also highlighted a potential role for NCVHS in connecting federal data liberation efforts and the evolving resources available to communities.

Dr. Cohen observed that the reason behind these efforts is that the federal government can play a large role in supporting the change going on all over the nation, as local communities become more proactive and evidence-based in their decision-making and planning. Government has a role in providing resources to help stimulate community-driven change and reinforce community assets. “This is a huge new frontier.” The next one is figure out how to get to the more actionable neighborhood level of geography.

Discussion

Mr. Scanlon suggested looking to other disciplines such as economics and the Census for model approaches to lower levels of geography. Dr. Cohen agreed that the Committee should elicit input from people who have successfully operated in that space.

Mr. Soonthornsima suggested holding meetings on this topic outside Washington, DC, to get more input from communities. Dr. Cohen added that the Committee should think of other dissemination channels to reach communities more effectively than its traditional focus on reports.

Dr. Mays called attention to the many changes in community action and data use in the years since NCVHS held its first hearings on community health data use, leading to its 2011 report, such as new infusions of foundation funding. Ms. Kanaan predicted that the forthcoming workshop would shed light on these differences.

Ms. Greenberg raised the topic of small area data and wondered if communities are amenable to using estimates, which an NCHS group is studying. Dr. Cohen said this topic was likely to emerge in the workshop discussions.

Dr. Cornelius pointed out that enlisting input from communities is a two-way street that should be combined with transparency and a feedback mechanism, to help build trust and a sense of relationship between communities and the federal statistical system.

HHS Health System Measurement Project – Susan Queen, Ph.D. (slides)

https://healthmeasures.aspe.hhs.gov

Dr. Queen introduced the Health System Measurement Project (HSMP), a new web-based tool designed to provide a high-level overview of the U.S. health care system. Mr. Scanlon explained that it is primarily intended as a dashboard for measuring health systems change, with current data serving as the baseline. The website provides data on up to 50 indicators, descriptions, various visualizations, and data links for ten critical dimensions of the system. The measures come from Federal agencies within and outside HHS and a few non-Federal sources and are supplied by the “data owner,” with appropriate data quality and validity as well as privacy and confidentiality protections. Most measures have ten years’ of data, and most are updated annually. The project, which was launched in May 2012, was developed by a Measurement and Evaluation Workgroup over several years.

Dr. Queen showed screen shots from the website and gave examples of how it can be used. Among many other variables, data can be sorted in terms of ten topical areas that include access to care, prevention, and innovation. Users can download data, explore data, and customize tables, but they cannot rerun the data because they are not raw data. The level of geography depends on the measure. There are no guidelines on data quality and privacy on the site at present, but this may change in the future. There is a link to information quality guidelines, but nothing on privacy; however, every agency has its own guidelines and procedures. (Ms. Kloss observed that this might be a gap that NCVHS could help meet. Dr. Queen suggested a high-level overview.) The contractor for the site has an open data API that allows software developers to access some of the data in order to create applications. Dr. Queen called attention to the “About” feature, which gives information on each measure.

HHS has conducted usability testing on site functionality, and will soon do focus group testing on different users and audiences. It is considering various enhancements and new measures and data sources for the future. Dr. Queen added that she wants to work with the Working Group to help optimize the site. She said that while it does not now link to other data sites, she wondered if it should. She asked for the Committee’s help in raising awareness of the site’s availability.

Discussion

Dr. Cohen observed that community leaders and other data users need assistance in evaluating and comparing the multitude of data sites and determining which one(s) to use. He suggested that more work is needed to “make it easier to decide how to use all these different sites.” Mr. Soonthornsima wondered about the possibility of an “über site” that ties them all together or provides navigational links. He also noted the need to target different forms of data access to specific audiences. Mr. Crowley noted e-commerce sites as a model of this. Mr. Scanlon said Google is the best way to search alternative data sources. However, Mr. Davenhall raised the related marketing issues, including the fact that the best source does not necessarily appear high on the list of Google search findings. Ms. Bradley said HHS needs to find out why its results don’t come out higher and work on optimizing the search engine.

Dr. Chanderraj suggested including data on care provided at shopping mall clinics, and the group discussed other possible enhancements and uses.

Final Comments – Dr. Green, Members and Staff

Dr. Green asked Ms. Jackson and Ms. Greenberg to create a work plan for the rest of the year based on the discussions during this meeting. It will be vetted by the Executive Subcommittee. He then asked members and others to offer comments. (For details, see the final pages of the transcript.)

The following themes were raised:

  • Appreciation for the Committee’s open and welcoming culture, depth and diversity of expertise, rich and challenging discussions, and valuable products;
  • The potential for transformation at this moment in history;
  • The increasing alignment under way, both in NCVHS and in the broader environment;
  • Questions about how best to take advantage of current opportunities;
  • The need to prioritize, due to limitations in the NCVHS bandwidth;
  • The need for flexibility;
  • The merits of the supply/demand framework and of attention to bridging the two;
  • Suggestion that the Secretary write members’ employers to acknowledge their generous volunteer service;
  • The need to work further on NCVHS structure and process, to facilitate convergence;
  • The merits of looking to other industries and sectors for models of information dissemination and use;
  • The abiding need to connect data-underserved communities to available resources, an effort that may require “feet on the street”;
  • The impossibility of imagining “NCVHS without Marjorie” and gratitude for her gifts;
  • Suggestion to include a community member on the Committee;
  • The need to ease the burden on physicians;
  • Gratitude for the quality of staff support;
  • The “awesome responsibility” of holding data in trust and trying to make wise decisions about how to use the information;
  • The possible merits of having high-level Committee discussion of new topics and cross-fertilization before a Subcommittee drills down into recommendations;
  • Appreciation for learning so much about what’s going on in the Department and hearing that the Committee’s work made a difference.

In conclusion, Mr. Scanlon thanked members for their service and assured them of the Department’s strong and ongoing support for NCVHS.

Noting that this is a time of major transition in NCHS leadership, Dr. Green reiterated that NCVHS must also transition its own structure and function and make better use of its strong staff. He asked for help in figuring out how to do that. At his invitation, the group concluded the meeting with a standing ovation for Ms. Greenberg.


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

/s/ June 19, 2013

Chair, Date