Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

November 13-14, 2012

National Center for Health Statistics, Hyattsville, MD

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on November 13-14, 2012, at the National Center for Health Statistics in Hyattsville, MD. The meeting was open to the public.

Present:

Committee members

  • Larry A. Green, M.D., Chair
  • Raj Chanderraj, M.D., FACC
  • Bruce Cohen, Ph.D.
  • Llewellyn Cornelius, Ph.D.
  • Leslie Pickering Francis, J.D., Ph.D.
  • Linda Kloss, RHIA, CAE, FAHIMA
  • Vickie Mays, Ph.D., MSPH
  • Sallie Milam, J.D., CIPP/G
  • William J. Scanlon, Ph.D.
  • W. Ob Soonthornsima
  • Walter Suarez, M.D., M.P.H.
  • Paul Tang, M.D., M.P.H.

Absent:

  • John J. Burke, MBA, MSPharm.
  • Len Nichols, Ph.D.
  • James Walker, M.D., 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

Others

  • Seth Pazinski, ONC
  • Kathryn Marchesini, ONC
  • Sue McAndrew, J.D., OCR
  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Nicole Cooper, NCHS
  • Susan Queen, Ph.D., ASPE
  • Leah Vaughan, Health Policy Group
  • Matt Quinn, NIST
  • Kassi Webster, NCHS
  • Tamara Jean-Paul, Ph.D., NCHS
  • Rachel Seeger, HHS OCR
  • Virginia Cain, Ph.D., NCHS
  • Susan Baird Kanaan, consultant writer
  • Bill Alfano, BCBSA
  • Dan Rode, AHIMA
  • Kelley Turek, AHIP
  • Jim Craver, OAE
  • Lauren Fleeger, VHA
  • Dorwin Day, Health Care Service Corp.
  • Makram Talil, NCHS
  • Ruth-Ann Phelps, VA
  • Steve Lazarus, Boundary Information Group
  • Hetty Khan, NCHS
  • Judith Warren, Ph.D., R.N. (phone)
  • Denise Buenning, CMS

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

EXECUTIVE SUMMARY

ACTIONS

The Committee approved a letter to the Secretary on a stewardship framework for the use of community health data.

Departmental Briefings

HHS/ASPE/Data Council – Jim Scanlon

Mr. Scanlon thanked retiring NCVHS members Drs. Hornbrook, Middleton and Warren for their service, announced the four new members, announced that Ms. Milam and Dr. Suarez have been reappointed for another term, and recognized retiring NCVHS Chair, Dr. Justine Carr, for her service. Dr. Carr has been asked to serve as Chair of the Working Group on Data Access and Use. Ms. Greenberg presented Dr. Carr with a plaque for her outstanding leadership and guidance to NCVHS.

Mr. Scanlon then reported on HHS policy and program initiatives, its strategic plan and targeted plans, and the work around health care reform. Finally, he outlined a number of HHS initiatives to support data liberation and community data use.

CMS – Denise Buenning

Ms. Buenning briefed the Committee on CMS work on EHR incentives, privacy, administrative simplification, and certification.

ONC – Seth Pazinski

Mr. Pazinski briefed the Committee on the Federal Health IT Strategic Plan; standards for meaningful use certification criteria in stages 1, 2, and 3; activities of ONC’s FACA work group nomination application website; the transition of the Nationwide Health Information Network Exchange to eHealth Exchange, a public-private initiative; and the ONC ehealth consumer program. A new ONC site is healthit.gov, designed to be the federal government’s primary source of health IT information for providers, consumers and policy-makers.

ONC Privacy and Security – Kathryn Marchesini

Ms. Marchesini focused on the activities of the Health IT Policy and Standards Committees’ privacy and security workgroups. They included a successful July 2012 hearing and privacy and security requirements for stage 2. The Privacy and Security Tiger Team included questions in the Stage 3 request for comment to be published soon in the Federal Register.

In the discussion period, in response to a question, Mr. Scanlon offered to share with NCVHS the findings from the Department’s recent studies of public health funding issues. Dr. Green affirmed that the Committee would be interested in this briefing.

Office of Civil Rights – Susan McAndrew

OCR is getting ready to launch the final HITECH regulations and is engaged in other rule-making efforts. Ms. McAndrew said OCR Director Rodriguez is “extremely committed to having an effective enforcement program….” OCR has developed and posted a protocol for the audit process and will work with the contactor to determine how to integrate audits into OCR’s enforcement efforts. She also described the Office’s several consumer-oriented efforts.

Letter on Stewardship of Community Health Data – Ms. Kloss and Dr. Francis (slides)

The Co-chairs presented a letter on a stewardship framework for community health data, developed by the Subcommittee on Privacy, Confidentiality and Security, and meeting participants discussed it. Based on this discussion, the Subcommittee then revised the letter and presented it on day two of the meeting, when it was approved.

The Community as a Learning Health System – Dr. Cohen and Ms. Milam (slides)

The Co-chairs briefed the Committee and elicited members’ thinking about the Population Health Subcommittee’s plans for developing a vision and research agenda for supporting communities as learning health systems. It has focused on a proactive short-term work plan for the Subcommittee that also suggests a longer-term direction for the full Committee. The planning process to date has identified three key objectives: crafting a vision of community health data use; finding out how leading-edge communities are doing community health needs assessment, what they need, and where the gaps are; and conceptualizing the infrastructure needed to support local data use. The Committee discussed these themes and work plans.

Incorporating a Quality Agenda – Dr. Tang (slides)

Dr. Tang reviewed the Subcommittee on Quality’s past agenda and products and their implications for future NCVHS work in this area. The ensuing discussion among members and staff focused on the relevance of quality issues to the project on communities as learning health systems.

Future Agenda for the Subcommittee on Privacy, Confidentiality and Security – Dr. Francis and Ms. Kloss

Ms. Kloss reported that as its next step, the Subcommittee will study models for stewardship of community health data. They will collaborate with the Subcommittee on Population Health, and they plan a hearing in the Spring. Committee members explored the relationship between the planned data stewardship work and the broader NCVHS community data use project.

Standards as a Continuing NCVHS Theme – Dr. Suarez (slides)

In his presentation on “Identifying present and future information exchange needs between providers, health plans/payers and public health in support of health care transformation,” Dr. Suarez gave an overview of current pressing needs and new requirements for the Subcommittee on Standards. He also covered the Subcommittee’s charge, themes and topics for the future in the context of the convergence theme, and intersections with other NCVHS subcommittees.

Role of the Working Group on HHS Data Access and Use – Dr. Carr (slides)

Dr. Carr said this new Working Group brings together expertise on IT, decision systems, geographic mapping, wireless health solutions and social media with expertise in community public health and community health informatics. She is Chair, four NCVHS members are on the Working Group, along with nine consultant members, and Susan Queen is lead staff. At her invitation, meeting participants discussed the intersections between the Working Group and the NCVHS full Committee and its subcommittees.

NCVHS Procedures and Products

Dr. Green led the Committee in a review of NCVHS procedures for producing the products that convey its findings, observations, and recommendations. Members discussed process, content, and format matters related to the production of NCVHS letters to the Secretary. A document summarizing these procedures and policies is being developed.

Summary Steps and Future Directions

To conclude the meeting, Dr. Green invited all those around the table to share their final thoughts and impressions. (See detailed summary, below.)

DETAILED SUMMARY

– Day One –

Welcome, Opening Remarks – Dr. Green

Dr. Green welcomed members and hailed the fact that the Committee is now fully populated, with four new members (see http://ncvhs.hhs.gov/members.htm). Dr. Cornelius is present, and the other three are awaiting completion of their appointments.

HHS Update – Jim Scanlon

Mr. Scanlon began by thanking retiring NCVHS members Drs. Hornbrook, Middleton and Warren for their service. He announced that the four new members are Lynn Blewett, Ph.D.; Llewellyn Cornelius, Ph.D.; Alexandra Goss; and William Stead, M.D. (See transcript or website for details.) Ms. Milam and Dr. Suarez have been reappointed for another term. He then recognized retiring NCVHS Chair Dr. Justine Carr for her service, and read a letter of appreciation from the Secretary, who has asked Dr. Carr to serve as Chair of the Working Group on Data Access and Use. Ms. Greenberg presented Dr. Carr with a plaque for her outstanding leadership and guidance to NCVHS.

Turning to status reports, he reported on HHS policy and program initiatives, its strategic plan and more targeted plans, and the work around health care reform. He reviewed the activities related to data standards, predicting there would soon be a core of commonly defined social and demographic information. Further work will be done on standardization of SES data, a process in which OMB is getting involved. HHS is also looking at data collection standards for administrative data and at standardized questions and measures on vulnerable populations.

HHS is preparing to track changes in health system reform. The Health System Measurement Project has a page on the HHS website. Mr. Scanlon described a few of the measures designed to assess progress, such as insurance coverage, quality of care, and workforce. There is also interest in measuring the impact of reform on innovation. He hopes to get the Committee’s advice on these activities.

HHS has developed a guide to HHS surveys and major data systems, posted on the ASPE/Data Council website. It will be expanded. He described a few pilot projects underway and said HHS is also looking at non-traditional data sources, including commercial sources and social media. In another area, HHS is working toward a proof of concept or pilot on alignment of Meaningful Use and public health. The CMS initiative on data and information data liberation is growing steadily. New HHS projects in this area include micro-simulation modeling for health policy; a forthcoming meeting on small area data, in which NCVHS members will be asked to participate; a study of what data will be needed to operate state health insurance exchanges; work on how public health can benefit more from health IT advancements, and another on the feasibility of conducting research on small, hard-to-reach populations through EHRs. With NCHS, HHS is looking at secondary uses of EHR data, such as the extent to which EHRs can feed information to HHS provider and health care surveys, and it is working on a web-based part of the NHIS. HHS is also testing a quick-response telephone survey.

CMS Briefing – Denise Buenning

CMS is helping to support the Department’s “big-picture” efforts in addition to its specific work. One of the latter is the EHR incentive program, on which she gave a status report. CMS is looking at privacy issues related to Medicare data, and preparing agreements, security measures, and other factors to bring the exchanges on board in 2014.

In the administrative simplification area, an enumeration system for the health plan identifier is up and being tested, and CMS has held national training calls. On ICD-10 code sets, CMS is now focusing on practical tools, especially to help small providers and community hospitals become compliant by the deadline. It is also doing end-to-end testing and outreach to the industry. A protocol for pre-testing standards to be adopted under HIPAA is being piloted. On certification, a draft proposed rule is under review, with an emphasis on finding synergies with existing processes. CAQH CORE has been named the authoring entity for remaining operating rules for all transactions. CMS is exercising enforcement discretion regarding HIPAA because of hurricane Sandy.

Discussion

Members’ comments and questions for Ms. Buenning concerned physician resistance to ICD-10 code set implementation; the nature of end-to-end testing; concern about the preparedness of state Medicaid agencies for ICD-10; the opportunity to coordinate ICD-10 implementation with meaningful use requirements and standards; and opportunities to move toward SNOMED.

ONC Briefing – Seth Pazinski

As Division Director for Planning and Operations in ONC’s Office of Policy and Planning, Mr. Pazinski is responsible for the Federal Health IT Strategic Plan, and his briefing is in that context. He reported on standards for meaningful use certification criteria in stages 1, 2, and 3; activities of ONC’s FACA work group nomination application website; the transition of the Nationwide Health Information Network Exchange to eHealth Exchange, a public-private initiative; and the ONC ehealth consumer program.

As of early November, there were more than 1600 unique certified EHR products by 900 vendors. Meaningful Use is the centerpiece of the Federal Health IT Strategic Plan. ONC is working on test procedures, tools, and data for Stage 2. On stage 3, a request for comment will be published the week of this NCVHS meeting, ending in early January.

ONC’s HIT Policy and HIT Standards FACAs have various workgroups. ONC launched an application website in early October to find new expertise and participants. ONC will use the resulting database as it establishes new workgroups or populates existing ones. On the transition from the NHIN to eHealth Exchange, Mr. Pazinski said the new entity is composed of federal agencies and private partners. A Coordinating Committee that oversees the Exchange is designated HealtheWay, a nonprofit organization, to assume operational support starting in October 2013. The Consumer eHealth Program is approaching its first anniversary. A key component is the ONC pledge program, which is a forum for learning, networking and mutual support among diverse organizations moving toward enabling patients and providers through health IT. An ONC/VA initiative, Health Design Challenge, aims to improve the design of personal health records. Products have to be done through open source and submitted under creative common license. Finally, a new ONC site is healthit.gov, designed to be the federal government’s primary source of health IT information for providers, consumers and policy-makers.

ONC Privacy and Security Briefing – Kathryn Marchesini

Ms. Marchesini focused on the activities of the Health IT Policy and Standards Committees’ privacy and security workgroups. They held a successful hearing in July 2012 to raise awareness of a national strategy for trusted identities of providers in cyberspace and understanding of the implications of issuing physician credentials for acceptance by multiple parties. It generated recommendations on provider authentication. In late November, the same groups will host a virtual hearing on trusted identities of patients in cyberspace.

Regarding meaningful use as an incentive for protecting health information, she reviewed the privacy and security requirements in stage 2. CMS’s EHR incentive rule includes a requirement for security risk analysis, with security updates and corrections as needed. Stage 2 also has requirements around patient engagement, including provisions for bidirectional secure email. The Privacy and Security Tiger Team included questions in the Stage 3 request for comment to be published soon in the Federal Register. There are questions on audit technology, consent management, and how Meaningful Use can help improve the capacity of EHR infrastructure, among others. To enable stage 2 and state-level payment reforms, ONC is working with the National Academies for State Health Policy and CMS to support state development of quality measurement reporting and feedback infrastructures.

Finally, Ms. Marchesini reviewed several ONC activities over the last six months, including development of a security training module, a pilot by the Consent Project, and a privacy and security consumer attitudes survey.

Discussion

Dr. Tang hailed HHS efforts to align public health and Meaningful Use, since the public health sector was left out of initial funding. He asked if there are ways NCVHS can encourage funding for public health departments so they can do the needed work to enable bidirectional transmission of information with EHRs. Mr. Scanlon said the funding issues are very complicated, and he offered to share with NCVHS findings from the Department’s recent studies of this matter and of public health financing generally. Dr. Green affirmed that the Committee would be interested in this briefing.

Office of Civil Rights Briefing – Susan McAndrew

OCR is getting ready to launch the final HITECH regulations, bringing into play genetic information nondiscrimination protections. Other rule-making efforts include working with CMS on an NPRM on providing test results from CLIA labs directly to individuals and expanding accounting for disclosures regulations. Ms. McAndrew stated that OCR Director Rodriguez is “extremely committed to having an effective enforcement program,” with a high profile, even for small providers. Large breaches are posted on the OCR website, totaling more than 500 to date (of which one quarter are of paper records). The Audit program was piloted in 2011 and 2012, with good feedback and results, and OCR has developed and posted a protocol for the audit process. It will work with the contactor to determine how to integrate audits into OCR’s enforcement efforts. In the security area, OCR has worked with ONC on how to secure and use mobile devices.

Related to consumers, OCR has produced eight consumer-oriented YouTube videos, one of them in Spanish. It also has partnered with WebMD on their education platform, Medscape, to post two components on the culture of compliance, viewed by at least 8,000 people.

Discussion

Members’ questions and comments concerned the use of SNOMED in HHS programs; the potential role, with appropriate funding, of the Joint Public Health Informatics Taskforce and other national organizations in efforts to align Meaningful Use and public health; whether NCVHS can comment on data segmentation and consent management related to Meaningful Use stage 3; the Committee’s interest in further work on data standards related to SES and on small area estimates; the need to standardize data collection on small populations to make the data more usable; and the need for further training in this area.

Dr. Green thanked the HHS presenters and likened the foregoing briefings to “trying to drink about 3,000 gallons from a fire hydrant.”

Letter on Stewardship of Community Health Data – Ms. Kloss and Dr. Francis (slides)

Ms. Kloss began with background on the letter being presented by the Subcommittee on Privacy, Confidentiality and Security for Committee approval. After reviewing previous NCVHS recommendations and publications on data stewardship, she said the impetus for the new letter was the recent NCVHS work on the community as a learning system. The Committee became aware that, a stewardship framework could help communities use local data in a way that builds and sustains local trust. After a hearing on community practices and issues in April, 2012, the Subcommittee looked at existing frameworks, drafted a preliminary document, and engaged in robust discussion with other NCVHS members in the process of developing the current draft letter.

Members then discussed the letter further. They agreed that the final letter should be presented to the Data Council, to make it aware of the NCVHS analysis and recommendations in this area. It was noted that the Working Group on HHS Data Access and Use may afford additional opportunities to explore this framework. The Subcommittee was asked to revise the letter based on this discussion, for action on day two of this meeting.

The Community as a Learning Health System – Dr. Cohen and Ms. Milam (slides)

The Subcommittee Co-chairs briefed the Committee and elicited members’ thinking about the plans of the Subcommittee on Population Health regarding a vision and research agenda for empowering communities as learning health systems. The goal of recent Subcommittee efforts is to develop a proactive short-term work plan for itself and a longer-term direction for the full Committee, identifying opportunities to work together to empower communities, facilitate standards, and promote convergence within the health information infrastructure. After reviewing the historical foundations for these efforts, including past NCVHS work and the Folsom Report, Dr. Cohen described the process used to develop a provisional short-term work plan. The process generated three key objectives: crafting a vision of community health data use; finding out how leading-edge communities are doing community health needs assessment, what they need, and where the gaps are; and conceptualizing the infrastructure needed to support local data use. He and Ms. Milam asked for discussion by the full Committee.

A number of major ideas and issues arose in this discussion. The first concerned how to delineate and coordinate the work of the Subcommittee, the full Committee, and/or other subcommittees (or other sub-units), within the framework outlined by the Subcommittee. This reflects the question of how to transition from siloed work to more coherent, integrated work. Members also discussed the best ways to prioritize and stage the Committee’s work, given its limited bandwidth, and how to identify the Committee’s “sweet spots” relative to what other organizations are doing to empower communities to use local data for health. Members were urged to consider what projects and products are most appropriate for a Committee that advises the HHS Secretary. Some stressed the need to do something focused and practical enough to have an impact. They also considered the best ways to elicit community perspectives and experiences as part of the process.

Incorporating a Quality Agenda – Dr. Tang (slides)

Dr. Tang reviewed the Subcommittee on Quality’s past agenda and products and their implications for future NCVHS work on quality. The Subcommittee’s October 2009 hearing on meaningful measures found a lot of redundant, siloed work under way, resulting in a lack of comparability and burdens for providers. NCVHS called for a national performance measurement strategy, standards, and mechanisms for mining EHRs. Then its 2010 hearing focused on information gaps in the context of health care reform and generated recommendations on the need to develop measures that are meaningful to consumers and patients as a top priority; fundamentally change the kinds of measures being developed and used to assess quality; and make quality reporting comparable. The next NCVHS quality hearing, on measures that matter to consumers, found that consumers are “flying blind” in making health care decisions. In its recommendations, NCVHS focused on the opportunities that impending insurance exchanges offer to develop relevant measures, provide user-tested information that is useful to consumers, and improve coordination.

Discussion

The presentation stimulated a wide-ranging discussion. Members noted the relevance of the issues and priorities identified by the Quality Subcommittee to the NCVHS project on communities as learning health systems, while acknowledging that improvements in health care only go some distance toward improving community and population health. Ms. Greenberg pointed out that NCVHS had not gotten much feedback from the Department about its quality recommendations, and she wondered how the Committee might move them forward. She also noted the resonance of quality issues with the theme of facilitating convergence in the health data infrastructure.

Dr. Tang commented that “the basis for thinking about quality measures in the future is to have the population in mind,” with attention to community-level outcomes as a health care reform priority. He added that many HHS agencies are engaged in community-level quality improvement projects, including ONC, CMS, and the Indian Health Service as well as AHRQ; and Ms. Greenberg suggested that these activities be included in the environmental scan. Ms. Kloss noted that this shift in emphasis to population health management in the health care system has data policy implications related to workforce and analytic capacities. The group discussed the need to retain information on variations within a population so that clinicians, policy makers, and patients can analyze and make decisions based on more targeted, less generalized information. Mr. Soonthornsima proposed that the Committee look for ways to “take little steps” and connect the dots using available opportunities. Dr. Mays pointed to behavioral health as another important dimension of meaningful quality of life measures.

Wrapping up the discussion and the day’s plenary proceedings, Dr. Green pointed to the convergence of the dimensions of individual, family, community, and public health that have been artificially separated. He added that quality and access are pillars of effective policy. Members then recessed into subcommittee sessions, to reconvene the following day.

– Day Two –

Opening Remarks – Dr. Green

Dr. Green observed that NCVHS is engaged in a “process transition” toward more work as a committee of the whole. To that end, the perspectives of each subcommittee population health, quality, privacy/security, and standards are being laid out at this meeting, with ample opportunities for discussion.

Community Health Data Stewardship Letter and Future Subcommittee Agenda – Dr. Francis and Ms. Kloss

The Privacy, Confidentiality and Security Subcommittee Co-chairs and Ms. Bernstein reviewed the changes made to the draft letter. After brief discussion, the Committee passed a motion to approve the letter.

Ms. Kloss then discussed the Subcommittee’s thinking about next steps. She noted that a few months ago, they went through a ten-year retrospective to identify key themes and stakeholders, which she enumerated. Now, they have agreed that the next step is to build on what was learned for the just-approved letter by studying models for stewardship of community health data that might be helpful to communities. They will collaborate with the Subcommittee on Population Health, and plan to have a hearing in April. The Subcommittee will convene a conference call to plan next steps.

Discussion

The wide-ranging discussion focused particularly on the data stewardship work and its relation to the broader NCVHS community data use project. Dr. Mays suggested framing the Committee’s work in terms of what communities “want and need” and their priorities. Dr. Cohen proposed focusing on educating communities around community data privacy and security issues, which are not a priority for most communities. Dr. Francis said the Subcommittee is thinking of developing use cases or case studies. Ms. Milam suggested that community experiences with the consequences of privacy and security missteps could shed light on the merits of proactive data stewardship. Ms. Greenberg urged that these themes be pursued in the context of a broader study of the uses of community data and the community as a learning health system.

Dr. Mays proposed an effort at broader dissemination of the NCVHS report on the community as a learning system and the new letter on a stewardship framework, combined with an effort to get feedback from communities to determine the relevance of these resources and to find out what communities feel they need. Ms. Bernstein shared her impression that communities tend to think of privacy in a narrower way than the Committee does that is, in terms of confidentiality as distinct from values such as fairness, transparency, and purpose specification. Dr. Scanlon raised the question of the proper federal role in this context and its implications for the NCVHS role. He stressed the need to minimize risks from aggressive data liberation and new forms of data collection and linkage. Mr. (Jim) Scanlon urged that the messaging make it very clear that this is not about new forms of federal regulation but is rather “the best thinking at this point” to assist communities, and it is subject to revision. Ms. Greenberg suggested an educational effort, including hosting a webinar focused on community data stewardship as well as presentations to professional associations such as AHIMA. Mr. Scanlon said that the Data Council has been asked to look at the mosaic effect, and would appreciate advice from NCVHS on this.

Standards as a Continuing NCVHS Theme – Dr. Suarez (slides)

The subtitle of Dr. Suarez’ presentation is “Identifying present and future information exchange needs between providers, health plans/payers and public health in support of health care transformation.” He gave an overview of current pressing needs and new requirements, the Subcommittee on Standards charge, themes and topics for the future in the context of the convergence theme, and intersections with other NCVHS subcommittees. He acknowledged current and retiring members, staff and liaisons, in particular Dr. Warren and Dr. Carr, and noted that HIPAA and the ACA had helped make standards a major component of NCVHS’s work.

After reviewing the long list of pressing needs and responsibilities that lie ahead for the Subcommittee in the coming year, he said the future holds a convergence of transactions, standards, and exchanges. Forces including the Triple Aim, HITECH, care delivery and payment reforms, economic pressures, and changes in public health create an opportunity to consider how standards can and will change to support transformation. The idea is to adopt a holistic view of the future of information exchange. The first step in this direction involves dialogue with stakeholders, which will begin on November 15 in an NCVHS-stakeholder roundtable on the subjects outlined above. The goal is to develop a roadmap for new information needs and align them with the various requirements that face the industry. Finally, Dr. Suarez outlined the opportunities to work across NCVHS, given the significance of standards for the work of each of the other subcommittees.

Discussion

The discussion began with a reference to the differing conceptions of standards in different contexts. Dr. Cohen suggested exploring how communities think about standards with respect to information exchange, with an eye to identifying the commonalities and differences between community and NCVHS perspectives and the implications of both for NCVHS. Dr. Suarez suggested a similar approach to SES standards. Ms. Kloss pointed to standards for code sets and vocabularies, such as those related to ICD-10 implementation and beyond. Mr. Soonthornsima noted the changing business model driving standards; and Dr. Green added that ontologies are also changing.

Ms. Milam called attention to the opportunities presented by Meaningful Use stage 3 and the continuing convergence of population health and clinical perspectives. Dr. Mays cited the special issues for ethnic populations and users of non-traditional health practices and the need to ensure that coding is specific to populations. Ms. Greenberg commented on the refinements that ICD-11 will bring to coding, terminology, and ontologies. She added that NIOSH is actively working with the Public Health Data Standards Consortium to bring occupation and industry coding into Meaningful Use stage 3. Mr. Scanlon said NCVHS could make a contribution by laying out the aforementioned developments and their relationships on a timeline, and he cited several relevant Federal and state activities. Participants discussed the significant developments with all-payer claims databases, for which HHS is conducting a beta test.

Dr. Scanlon stressed that much more work is needed on standards in these broad contexts, and he urged that we “get serious about it this time.” He also observed that while people may use the same words (e.g, envelope), they may not mean the same things by them or understand their full technical meaning. He urged NCVHS members to think through how far they need to get in a short amount of time.

From the audience, Steve Lazarus of Boundary Information Group commented that there are transaction standards and some standard data code sets but no data standards, and these are needed. Population health analysis big data analysis cannot happen until data elements are defined in a standard way. Furthermore, ACOs and medical home organizations need data standardization to meet their internal operating needs. He urged the Committee to influence “how we move … to where we need to be,” and stressed the urgency of this task.

Role of the Working Group on HHS Data Access and Use – Dr. Carr (slides)

Dr. Carr described the Working Group as an extraordinarily rich group that brings together expertise on IT, decision systems, geographic mapping, wireless health solutions and social media with expertise in community public health and community health informatics. She is Chair, and four NCVHS members are on the Working Group; Susan Queen is lead staff. After reviewing the Working Group’s charge and seven specific “asks,” she focused this discussion on the intersections between it and the NCVHS full Committee.

Mr. Scanlon explained that HHS, recognizing that “the technology community is way ahead of us,” is asking the Working Group to serve as a reactor panel, to provide technical advice on data dissemination and other matters. Any formal recommendations would come through NCVHS. Dr. Carr noted that the modus operandi for this new entity will develop over time. She described the learnings in which the Working Group has been engaged and stated her goal for future meetings to generate tangible actions and next steps.

Discussion

Dr. Green asked for regular reports from the Working Group at full Committee meetings. Dr. Cohen, a Working Group member, observed that the public health and technology members speak different languages, but that will lessen over time. He noted that the technologists need to understand the Department’s different types of data. The group discussed the roles of NCVHS members on the Working Group, and Mr. Scanlon advised them to contribute their expertise but without feeling they need to formally represent NCVHS perspectives. The idea, he said, is to “keep the reins fairly loose.”

There was a sidebar exchange about the difficulties members are having using SharePoint, with an appeal to use an email backup system until the usability of SharePoint can be improved.

NCVHS Procedures and Products

Dr. Green led the Committee in a review of NCVHS procedures for producing the products that convey its findings, observations, and recommendations. A document summarizing these procedures is being developed, revising a previous document. He explained that letters to the Secretary, which are just one potential NCVHS product, are the intended focus of this discussion.

Members discussed process, content, and format related to letter production. They agreed that the process should begin with a presentation to the full Committee, followed by dialogue to elicit the full range of members’ perspectives on the proposed letter. They discussed the optimal length and structure of letters to maximize their impact and agreed that in general, letters should be concise and no longer than three pages, with anything longer being treated as a report. However, they also agreed not to be too rigid about this, as form should follow function. Although there was some agreement about the merits of consistency in NCVHS letters, there were differing views on the optimal structure. Ms. Greenberg reviewed the established protocol for final approval and distribution of letters and reports.

Dr. Suarez urged that the Committee build some flexibility into its processes, in view of the rapid pace of events and change in the health information policy arena. Others noted the importance of timeliness and the need to balance adequate deliberation with keeping pace with the rate at which things are moving. The group also discussed members’ obligations to “do their homework,” meet deadlines for comments, and be judicious about what critiques they bring to full Committee discussions at later stages of document development.

There was general agreement that Full Committee review and discussion of draft letters should focus primarily on the recommendations. However, it was noted that what some regard as “wordsmithing” can for others involve significant matters of wording, content, and emphasis for which they feel accountable. However, the review and revision process can only work if people offer timely objections and input.

Dr. Scanlon urged that the practice of projecting documents on the screen (thereby inviting wordsmithing) be discontinued; none of the other advisory committees on which he has served engage in this practice. The final presentation should cover only the letter’s purpose, findings and recommendations. He advised NCVHS to “be concerned about what your audience wants,” noting that it is “an executive audience,” both within and outside the Department. He strongly recommended attaching a “one-pager” to all reports and letters, as is standard GAO practice.

Summary Steps and Future Directions

To conclude the meeting, Dr. Green invited all those around the table to share their final thoughts and impressions. He stated that he plans to “manage the Committee toward its deliverables.” The fundamental problem is the unusually rapid pace of events in the Committee’s environment.

The subjects of members’ comments included:

  • The themes of deliberation, inclusiveness and accountability;
  • The need to be efficient without sacrificing rich discussion and substance stemming from the diverse perspectives represented on the Committee;
  • Acknowledgment that the foregoing discussion of procedures and products suggests a new approach to approving NCVHS letters;
  • The importance of seeking, hearing, and integrating “disruptive input”;
  • HHS commitment to assist this hard-working Committee in every way possible;
  • Affirmation that NCVHS is engaged in “shaping the transition”;
  • Appeal for every Subcommittee to schedule regular monthly calls;
  • The Committee’s critical role as a dot-connecter (“the right dots”) and a voice of reason;
  • The need to clarify and articulate NCVHS priorities and near-term goals;
  • The implications for its priorities of the Committee’s limited resources and bandwidth;
  • The necessity of education and preparation within the Committee, given the complexity of the issues it is dealing with;
  • Gratitude for the respect and consideration shown to NCVHS staff and liaisons; and
  • Excitement about the potential contributions of new members.

With that, Dr. Green adjourned the meeting.

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

/s/ February 28, 2013

Chair, Date