Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 11-12, 2014

Hubert H. Humphrey Building, Washington DC

MEETING MINUTES


The National Committee on Vital and Health Statistics was convened on June 11-12, 2014 at the Hubert H. Humphrey Building in Washington, DC. The meeting was open to the public.

Present:

Committee members

  • Larry A. Green, M.D., Chair
  • Lynn A. Blewett, Ph.D. (phone)
  • John J. Burke, MBA, MSPharm.
  • Raj Chanderraj, MD, FACC
  • Bruce Cohen, Ph.D.
  • Leslie Pickering Francis, J.D., Ph.D.
  • Alexandra Goss
  • Linda Kloss, RHIA, CAE, FAHIMA (phone)
  • Vickie Mays, Ph.D., MSPH
  • Sallie Milam, J.D., CIPP/G
  • Len Nichols, Ph.D.
  • W. Ob Soonthornsima
  • William W. Stead, M.D.
  • Walter Suarez, M.D.
  • James Walker, MD, FACP

Absent:

  • Llewellyn Cornelius, Ph.D.

Lead Staff and Liaisons

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

Others (not including presenters)

  • Chris Fulcher, Ph.D. (Working Group)
  • Leah Vaughan, M.D. (Working Group)
  • Susan Queen, ASPE
  • Dan Rode, Dan Rode & Assoc.
  • Victor Richardson, WV HealthCare Authority
  • Michael DeCarlo, BlueCross BlueShield
  • Susan Baird Kanaan

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. Final versions of NCVHS documents discussed in the meeting are posted in “Reports and Recommendations.”


EXECUTIVE SUMMARY

ACTIONS

  1. The Committee passed a motion approving the 11th Report to Congress on HIPAA implementation. It authorized NCVHS leadership and staff to make minor, non-substantive modifications based on discussion of the report.
  2. The Committee passed a motion approving a letter to the Secretary on electronic standards for public health information exchange.

Updates from the Department

  • ASPE – Jim Scanlon

After noting that Sylvia Mathews Burwell is the new Secretary of HHS and Richard Frank is the new Assistant Secretary for Planning and Evaluation, Mr. Scanlon gave an overview of the HHS Strategic Plan for 2014-18. ASPE is using state and federal data and administrative and population survey data to measure and monitor progress on the ACA. ASPE now hosts an NCHS Research Data Center in the Humphrey Building, called the HHS Research Data Center. He offered to brief the Committee at a future meeting on the new Data Council data strategy. Members talked with him about how NCVHS might extend a welcome Secretary Burwell and Dr. Frank and introduce them to NCVHS.

  • CMS – Matthew Albright

Mr. Albright, the Acting Deputy Director of the Office of eHealth Standards and Services at CMS, noted the leadership changes in his office: Todd Lawson is the Director, and Denesecia Green directs the administrative simplification group. He described a recent e-health summit held by CMS, primarily about EHRs, Meaningful Use and quality issues. He also reported on the status of health care EFT payments, certification of compliance, attachments, the health plan ID, and Meaningful Use incentive payments. NCVHS members commented on the potential benefits of quantifying and trending the savings from administrative simplification and sharing the findings with Congress.

  • ONC – Judy Murphy (slides)

Ms. Murphy reported on EHR adoption statistics, vendor certification status, the JASON Report, the PCAST Report, the ONC 10-year Vision for Interoperability, the new Health IT dashboard, and functional realignment within ONC and its FACA committees.

  • ONC Privacy and Security Update – Joy Pritts (slides)

Ms. Pritts focused on the status of the Data Segmentation for Privacy (DS4P) Initiative, which concerns the ability to share information and patients’ choices about what to share, with whom, and how. The types of privacy metadata include confidentiality codes, purpose of use, and obligations. She reviewed the current status of federal and state law regarding privacy protections. She also described six pilots of new standards for tagging data, and outlined next steps for ONC’s advisory groups.

  • OCR Update and Outreach Rachel Seeger (slides)

Christina Hyde is now Acting Director of OCR, replacing Susan McAndrew who retired in May. OCR has publicly released its 2011 and 2012 reports to Congress. Ms. Seeger described OCR’s recent compliance and enforcement activities and new outreach and training products and efforts, and said more robust enforcement and audits are coming. After members talked with her about the issue of e-consent, Ms. Kloss and Dr. Francis expressed the Committee’s interest in delving further into the topic of data segmentation and assisting the Department in this area.

  • 11th HIPAA Report to Congress – Dr. Suarez and Mr. Soonthornsima (slides)

The Standards Subcommittee co-chairs presented for action the 11th HIPAA Report to Congress. Dr. Suarez described the 10-month-long developmental process for the report, which goes to the Speaker of the House and several Congressional committees. He gave a detailed overview of the report and its key themes. It contains no new recommendations, but does describe previous NCVHS recommendations. Following brief discussion and minor modifications, the Committee passed a motion approving the report.

  • Letter on Electronic Standards for Public Health Information Exchange – Dr. Suarez and Mr. Soonthornsima

The Standards co-chairs then presented to the Committee for action a draft letter to the Secretary on electronic standards for public health information exchange. The letter provides observations and five recommendations from NCVHS about the current state of health informatics standards used by public health and population health programs. It is based on an NCVHS hearing held in November 2013. Following discussion and a few minor changes, the Committee passed a motion approving the letter as revised.

  • Strategic Discussion – Dr. Green

The group discussed how to monitor responses to recent NCVHS recommendations and agreed to revisit this question at a future meeting. The suggestion of a formal briefing on the Department’s response to the IOM report on measurement for the public health was referred to the Executive Subcommittee. Ms. Jackson reviewed the three actions taken at the May 15 virtual meeting, as recorded in the minutes of that meeting. She suggested that the Committee consider holding a virtual meeting between scheduled in-person meetings on an ongoing basis, starting in 2015. Members were receptive to the idea, and discussed potential uses of technology to enhance the Committee’s communication and operations.

Mr. Scanlon reported that the ACA, in Section 1104 on administrative simplification, directs the Secretary to establish a review committee. He asked whether NCVHS was willing to serve as this review committee. The Committee responded positively to this opportunity, on the condition that it was assured full membership and strong staffing. The group discussed approaches to prioritizing and streamlining NCVHS work. Mr. Scanlon reported that the Department is now looking at candidates to fill the two empty NCVHS seats.

  • Public Comment

Dan Rode suggested that NCVHS offer the opportunity for public comment following each major session of the agenda, and invite non-attendees to send written comments.

  • Subcommittee on Privacy, Confidentiality and Security Block Ms. Kloss & Dr. Francis (slides)

The major focus of this session was presentation of the draft community data user toolkit by consultant/writer Maureen Henry. After Ms. Kloss reviewed the Subcommittee’s work plan, Dr. Francis introduced Ms. Henry, who has been working with the Subcommittee on the project for several months. The goal is full Committee approval of the toolkit in September. The objective is to provide guidance to community data users on using data to improve community health. It emphasizes but is not limited to privacy, confidentiality, and security; personally identified and/or sensitive data are subjects of particular interest. The primary target audience is community data users. The Subcommittee would hold a virtual reactor workshop in July. Dr. Mays suggested also creating a repository where people could post useful resources such as data use agreements to make them available to other communities.

Ms. Kloss then asked Dr. Suarez to brief the group on data segmentation for privacy. (His detailed slides on the topic are linked to the Standards Subcommittee agenda.) He stressed that it is important for NCVHS to be aware of the “incredible” technological developments in this arena, along with the policy developments. After providing some background and context, he gave basic definitions for the key concepts of eConsent, data segmentation, metadata tags, security labeling, and provenance, and said standards development organizations have been active in this area. Dr. Carr pointed out the importance of “looking at the end product” and considering the impact of data sequestration on the quality of care, and she wondered what group is looking at that question. Dr. Walker suggested prospective risk assessment as a methodology. Dr. Suarez agreed that NCVHS or another group should move in that direction.

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

After discussing how to address the fact that the HIPAA report and letter just approved will be the first documents the new Secretary will receive from NCVHS, the group reviewed the Subcommittee work plan. Members then discussed clinical perspectives on ICD-10 and SNOMED and how NCVHS could help simplify what physicians have to deal with. Dr. Suarez suggested that the subject be revisited in greater depth at another time.

He then introduced Margaret Weiker, Chair of the ASC X12 Insurance Subcommittee, who presented background information and a proposal about adoption of XML TR3 Schema. After her presentation and discussion, Subcommittee members said they would take the request under advisement and develop a recommendation to refer to the full Committee in “a few weeks.”

  • Subcommittee on Population Health Block – Drs. Cohen and Stead (slides)

Ms. Kanaan reported on a series of key informant interviews she conducted on the topic of community data readiness. The project relates to the Committee’s goal of helping data providers and connectors meet communities where they are by understanding the range of local needs and capacities for using data to improve community health. The interviews also were designed to inform planning for the Fall Roundtable on community data use.

The group discussed the findings, with particular attention to how to integrate the strands of NCVHS work on community data and how to use the Roundtable to advance the initiative. Members liked the idea of facilitating sharing among Roundtable participants from their varied perspectives as community activists, data connectors/intermediaries, and data suppliers. A major theme of discussion was how to pursue the dual goal of enabling local people to do more for themselves and improving their access to expert assistance. The planners were encouraged to look beyond the usual “traditional organizations” for participants and case examples. Ultimately, the group converged around the idea of using the Roundtable to learn about solutions, align diverse perspectives, and clarify the federal role in facilitating local data use.

Vickie Boothe then showed slides and briefed the Committee on the work of her CDC office on community health needs assessment and improvement planning. She and the Subcommittee talked about the considerable activity in this arena and her perceptions of what communities need.

  • Briefing on the Working Group on Data Access and Use – Dr. Carr (slides)

This was Dr. Carr’s final meeting with NCVHS after ten years of service eight as an NCVHS member/Chair, and two as Chair of the Working Group. Dr. Mays now succeeds her as Working Group Chair.

The plenary session resumed for this session, in which Dr. Carr reported on the recent Datapalooza, where she co-moderated a panel with Damon Davis of HHS. She traced the changes in this event over its four years, noting that her description applies not just to the event but to the health technology arena it showcases. She then commented on the evolution of roles with respect to data, starting with generator and aggregator and moving toward miner, integrator, and validator. She then profiled several of the apps and activities she found most interesting at the Datapalooza.

Finally, turning briefly to the subject of the Working Group itself, Dr. Carr pointed out that its members are consultants and that is the role they should play. She and Dr. Mays are working to re-energize the group, with a focus on providing immediate, in-the-moment feedback to HHS.

Dr. Mays and Dr. Green expressed gratitude to Dr. Carr for her many forms of leadership and service to NCVHS and HHS over the past decade.


DETAILED SUMMARY

– Day One –

Dr. Green welcomed attendees and expressed appreciation for the “graduate course” hearing hosted by the Subcommittee on Standards the previous day. He (and later Ms. Jackson) stated for the record that the full Committee met virtually via conference call on May 15, with several actions.

Updates from the Department

  • ASPE – Jim Scanlon

After noting that Sylvia Mathews Burwell is the new Secretary of HHS and Richard Frank is the new Assistant Secretary for Planning and Evaluation, Mr. Scanlon gave an overview of the HHS Strategic Plan for 2014-18, which aligns with strategic plans and initiatives in several specific areas. Congress has begun to consider the President’s FY2015 budget, and ASPE has started work on the FY2016 budget.

ASPE has posted a report on the first open enrollment period for the ACA, using data from healthcare.gov and state-based exchanges and using both administrative data and population survey data to measure and monitor progress. There is less information from the states running their own exchanges; and estimates from small surveys are less reliable because of low response rates. More reliable information on a national level will be available in September.

ASPE now hosts an NCHS Research Data Center in the Humphrey Building, called the HHS Research Data Center. Also, OMB has launched an initiative to make better use of federal administrative data holdings, hoping to find opportunities to improve the analytic capacities and cost-effectiveness of federal statistical and programmatic agencies. HHS continues to look for ways to measure the impact of programs and policies on vulnerable populations; for example, it is adding questions to several HHS surveys and updating data in the Health System Tracking Project.

The Data Council put together a data strategy, on which Mr. Scanlon offered to brief the Committee at a future meeting. The goals are to address all high-priority data gaps in a coordinated fashion; to enhance primary data collection; and to align and integrate data resources and sources. Finally, he described an HHS project with the NCHS Health Care Division related to the transition to ICD-10, and others on the impact of the ACA on public health.

Members talked with Mr. Scanlon about how NCVHS might extend a welcome Secretary Burwell and Dr. Frank and introduce them to NCVHS. Plans for doing so will move ahead.

  • CMS – Matthew Albright

Mr. Albright, the Acting Deputy Director of the Office of eHealth Standards and Services at CMS, reported on the other leadership changes in his office: Todd Lawson is the Director, and Denesecia Green directs the administrative simplification group. He reported on an e-health summit held by CMS recently, primarily about EHRs, Meaningful Use and quality issues. One presenter reported a huge savings since implementation of the operating rules, through greater efficiency. Data on broader ROI across the industry are not available, although this is being discussed. He also reported on the status of health care EFT payments, certification of compliance, attachments, the health plan ID, and Meaningful Use incentive payments.

In the discussion period, members commented on the potential benefits of quantifying the savings from administrative simplification and starting to trend it. Ms. Kloss suggested that the Subcommittee on Standards look into that, and Dr. Carr endorsed the idea of using these data in the next HIPAA report to Congress. Ms. Pritts noted “a yellow flag on the EFT”: a lingering question about what rules apply to financial institutions when they process them. Dr. Carr said that NCVHS commented on this issue at a recent meeting.

  • ONC – Judy Murphy (slides)

Ms. Murphy reported on EHR adoption statistics, vendor certification status, the JASON Report, the PCAST Report, the ONC 10-year Vision for Interoperability, the new Health IT dashboard, and functional realignment within ONC and its FACA committees. EHR adoption has reached a tipping point, especially for hospitals, with 95% registered and 91% paid by Medicare or Medicaid. The comparable numbers for professionals are 88% and 70% (4/30/14 data). The majority of eligible professionals have attested to Stage 1, and most in that group return to attest year after year (based on 2011-2013 patterns). 940 products have been certified so far in 2014, which she said was getting to critical mass. Many of the early attestors are newer technologies, on cloud-based solutions.

The JASON Report, “A Robust Health Data Infrastructure,” was written by an independent scientific group. Its key findings concern the lack of interoperability among data resources for EHRs, their consequences, and how this can be resolved. The report was sponsored by AHRQ in collaboration with ONC and RWJF. Two key recommendations are that ONC define an overarching software architecture for the health data infrastructure and that EHR vendors be required to develop and publish APIs that support that architecture. The PCAST report is a follow-up to the one published in 2010. One major conclusion concerns the need to look toward systems engineering, to improve care and reduce costs.

ONC has released its vision for interoperability, with goals for 3, 6, and 10 years. Also, the Health IT Dashboard has had a major renovation; ONC has restructured and repurposed the Health IT Policy and Standards committees and their work groups; and ONC has had a functional realignment and “flattening,” with 11 offices now reporting directly to Dr. DeSalvo and/or Dr. Reider.

NCVHS members asked questions about controls with cloud-based services, the multitenant environment, and what types of eligible physicians are not participating and why. Dr. Green noted the evidence of “a real credibility issue” regarding Meaningful Use and EHRs as well as the need to heed Ms. Murphy’s sense that things are trending in a positive direction.

  • ONC Privacy and Security Update – Joy Pritts (slides)

Ms. Pritts focused on the status of the Data Segmentation for Privacy (DS4P) Initiative, which concerns the ability to share information and patients’ choices about what to share, with whom, and how. The types of privacy metadata include confidentiality codes, purpose of use, and obligations. She reviewed the current status of federal and state law regarding privacy protections. As HIE takes off, sensitive information generated by behavioral health care providers and others is being excluded from systems, excluding the 20 percent of the market that is said to be responsible for 80 percent of the costs of health information exchange. ONC has been looking at this topic since 2010, focusing particularly on technology rather than policy and particularly on substance abuse and behavioral health. The public/private DS4P initiative that it initiated in the Standards and Interoperability Framework has now come to an end with the development of a set of standards for tagging data. The results were fed into HL7 and IHE, and HL7 has developed an implementation guide. The standards are in place. A set of six pilots, including the NETSMART Pilot, the VA/SAMHSA Pilot, and the CERNER BH (formerly SATVA) Pilot, used, tested and “finessed” the standards. Ms. Pritts described these pilots and their accomplishments and findings. The next step is to take the issue to the Policy Committee. In addition, the Privacy and Security Tiger Team developed a glide path for recipients of protected data (see slide), and its recommendation will go to the Standards Committee.

  • OCR Health Information Privacy Update – Rachel Seeger (slides)

Christina Hyde is now Acting Director of OCR, replacing Susan McAndrew who retired in May. OCR has publicly released its 2011 and 2012 reports to Congress, as required under HITECH. The reports are on breach notification and the status of compliance with HIPAA rules. Ms. Seeger reported on OCR’s recent compliance and enforcement activities and new outreach and training products and efforts. She shared recent enforcement highlights, including 21 settled agreements with detailed corrective action plans and monetary settlements. The settlements total more than $8 million. Areas of concern for OCR include risk analysis and risk management, security and control of portable electronic devices, proper disposal, and the lack of senior leadership attention to compliance and of a culture of compliance. More robust enforcement and audits are coming from OCR, which is revisiting its audit protocols to reflect changes in the Omnibus Rule. Ms. Seeger then commented on the ONC/OCR security risk assessment tool, calling it “outstanding.” The two agencies also developed a new Medscape module, bringing the total to six modules that are getting a lot of use by their target audiences.

After members called attention to the issue of e-consent, Ms. Kloss and Dr. Francis expressed the Committee’s interest in delving further into the topic of data segmentation in the context of data stewardship and offered to assist the Department in this area. Dr. Carr thanked Ms. Seeger and Ms. Pritts for their work in this difficult area, and encouraged them to “keep at it.” Dr. Walker wondered if there might be ways to use disincentives to make “not doing right” cost as much as “doing it right.”

  • 11th HIPAA Report to Congress – Dr. Suarez and Mr. Soonthornsima (slides)

The Standards Subcommittee co-chairs presented for action the 11th HIPAA Report to Congress. Dr. Suarez described the 10-month developmental process for the report and acknowledged the role of Ms. Deutsch (Subcommittee lead staff) as “the heart of the report.” The report goes to the Speaker of the House and several Congressional committees. He gave a detailed overview of the report (the final version of which is posted on the NCVHS website) and its key themes. It contains no new recommendations, but does describe previous NCVHS recommendations.

NCVHS members’ discussion of the report began with a characterization of it as “an unbelievable work of brilliance,” representing an enormous amount of hard work on complex topics. A few minor modifications were suggested and discussed. A major focus of the discussion was the need for more effective outreach to practicing physicians regarding ICD-10, EHRs, Meaningful Use, and related policy priorities. Related points concerned the need to hear from the “boots on the ground” perspective and the need to educate and inform Congress.

The Committee then passed a motion approving the 11th Report to Congress and authorizing NCVHS leadership and staff to make minor, non-substantive modifications based on the foregoing discussion.

  • Letter on Electronic Standards for Public Health Information Exchange – Dr. Suarez and Mr. Soonthornsima

The Standards co-chairs presented to the Committee for action a draft letter to the Secretary on electronic standards for public health information exchange. The letter provides observations and five recommendations from NCVHS about the current state of health informatics standards used by public health and population health programs. It calls attention to the “unprecedented opportunity” to invest in the public health information infrastructure, to ensure that it is capable of interacting effectively and efficiently with the rapidly evolving electronic health record systems and health information exchanges of the future. The observations and recommendations are based on inputs from stakeholders at a November 2013 NCVHS hearing on the subject. At that hearing, NCVHS learned that public health agencies at state and local levels face great challenges with respect to their information infrastructures. Dr. Suarez summarized the findings and recommendations in the letter. After a few minor modifications, the Committee passed a motion approving the letter as revised.

Strategic Discussion – Dr. Green

The group discussed how to monitor responses to recent NCVHS recommendations and agreed to revisit this question at a future meeting.

Dr. Stead proposed a formal briefing on the Department’s response to the IOM report on measurement for the public health, and this was referred to the Executive Subcommittee.

Ms. Jackson reviewed the May 15 virtual meeting, at which three action items were approved and the groundwork laid for actions taken at the present meeting. She suggested that the Committee consider holding a virtual meeting between scheduled in-person meetings on an ongoing basis, starting in 2015. Members endorsed the idea of using technology to support NCVHS communication, and various tools were suggested (e.g., Google Hangout Plus). It was noted that virtual meetings could enable more people to participate in and/or observe NCVHS meetings, provided the meetings and any documents discussed are adequately noticed. Because some topics can be handled virtually quite well while others require face to face discussion, the idea is to use a strategic combination of the two. Ms. Jackson said the staff is now using Gov-Delivery to communicate with the NCVHS listserv, and she expressed appreciation for receiving review documents in a timely manner in advance of meetings.

Mr. Scanlon reported that the ACA, in Section 1104 on administrative simplification, directs the Secretary to establish a review committee. He asked whether NCVHS was receptive to serving as this review committee. The assigned functions lie within the scope of what NCVHS already does evaluating and reviewing HIPAA standards and operating rules and reporting and providing recommendations to the Secretary. Dr. Carr, asked to comment, stressed the importance of having the full complement of 18 NCVHS members because of the overall work load. If this were the case, she and others agreed that the new assignment fits well for the Committee. Ms. Goss suggested that NCVHS be prepared to refine what it takes on in the future. Others stressed the merits of the Committee’s new way of working together as a Committee of the whole, and the importance of strong staff support. Dr. Green summarized the Committee’s response to the query as positive, provided it had full membership and strong staffing.

Dr. Suarez commented that NCVHS (e.g., in its standards work) has benefitted from the strong support of the industry. Dr. Stead suggested engaging in a prioritization process, using written statements of the topics people think NCVHS should be looking at. Other suggestions were to identify what NCVHS can do less of; to maintain a well-documented work plan; and to time the work plan with fixed periods set aside for review and/or for taking on new projects, with the option of bringing in more staff resources for larger projects. Regarding new NCVHS members, Mr. Scanlon reported that the Department is now looking at candidates to fill the two empty seats.

Public Comment

Dan Rode said he and others who helped write Section 1104 of the ACA thought of NCVHS as the group that should perform the mandated advisory function. He then suggested that NCVHS have public comment after each major subject on the agenda rather than once at the end of the meeting. In addition, it might invite people to send written comments if they are unable to attend in person.

The group then recessed into a series of Subcommittee “blocks,” which all NCVHS members are asked to attend.

Subcommittee on Privacy, Confidentiality and Security Block – Ms. Kloss & Dr. Francis (slides)

The major focus of this session was presentation of the draft community data user toolkit by consultant/writer Maureen Henry. First, Ms. Kloss reviewed the status of the Subcommittee’s work plan, noting that data segmentation is an emerging issue that the Subcommittee may take up next.

Dr. Francis then introduced Ms. Henry, who has been working with the Subcommittee on the toolkit for several months. The goal is to have full Committee approval of the toolkit in September. Ms. Henry said the objective of the project is to provide guidance to community data users on using data to improve community health. It emphasizes but is not limited to privacy, confidentiality, and security; and personally identified and/or sensitive data are subjects of particular interest. The target audience is community data users, but the intention is also to be useful to people “further up in the government chain” at county and state levels. The project began with an environmental scan and review of past NCVHS reports. She then gave an overview of the toolkit. Several case studies are woven through it, and the authors asked the group for suggestions of a few additional examples.

Dr. Francis said the Subcommittee would hold a virtual reactor workshop in July, inviting everyone Ms. Henry has talked with. Members suggested a number of other possible participants and resources, as well. (See transcript.) Dr. Mays suggested also creating a repository where people could post useful resources such as data use agreements to make them available to other communities. Dr. Francis said there is thought of creating an online resource that can be updated.

Ms. Kloss then asked Dr. Suarez to brief the group on data segmentation for privacy. (Note that his detailed slides on this topic are linked to the Standards Subcommittee agenda.) She later observed that this information “catapults [NCHVS] to a new level of thinking about what privacy, confidentiality and security are going to mean in a very short timeframe.”

Dr. Suarez noted that Joy Pritts also spoke on the topic earlier in the meeting. He has served as Co-chair of the Privacy & Security Workgroup of the Health IT Standards Committee and as a member of the HL7 Security Work Group. He stressed that it is important for NCVHS to be aware of the “incredible” technological developments in this arena, along with the policy developments. Standards exist for the electronic tags on data and for coding and classifying the confidentiality of information and tagging it in a medical record. Other new concepts in this area include eConsent and data provenance. Major drivers of new approaches include the growing sensitivity around privacy and information, awareness of exposures and breaches, and higher expectations for patient engagement in care and the principle of “nothing about me without me.” The rapid adoption of EHRs is also a driver, along with expanded demands for health information exchange. He gave basic definitions for these key concepts: eConsent, data segmentation, metadata tags, security labeling, and provenance.

Standards development organizations have been active in this area. Dr. Suarez described the HL7 security workgroup’s Version 3 Implementation Guide for Data Segmentation for Privacy (Release 1), which is tied to the clinical document architecture. The standard has not been mandated yet, but it can be adopted voluntarily and some organizations are starting to use it. The International Standard for Health Care Privacy and Security Classification is another new standard. He then explained security labels and gave some examples of different types of tags, including ‘sensitivity,’ ‘purpose of use,’ and ‘obligation.’

Dr. Carr pointed out the importance of “looking at the end product” and considering the impact of data sequestration on the quality of care. She wondered what group is looking at that question. Dr. Walker suggested prospective risk assessment as a methodology. Dr. Suarez agreed that NCVHS or another group should move in that direction. He explained that the work he described was a SAMHSA initiative. Dr. Carr noted that segmentation and consent are different, but tend to get blended together. Dr. Green noted the relevance of the work in this area to community data uses, at least for the more sophisticated communities; he and Dr. Mays wondered about including information on it in the toolkit, preferably with use cases to illustrate how the practices work. Finally, Dr. Suarez described recent work on data provenance (concerning the source and trail of data) and said ONC has a new initiative on this. He also mentioned The National Strategy for Trusted Identity in Cyberspace (NSTIC). In conclusion, he said this dynamic arena is just getting moving. Some of the concepts will probably be incorporated in Meaningful Use 3.

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

The Subcommittee on Standards held the final meeting block of the day. Having received approval of the HIPAA report and the letter on public health informatics standards, the members briefly discussed how to acknowledge that these are the first documents the new Secretary will receive from NCVHS. Once that was resolved, they reviewed the Subcommittee work plan. Dr. Suarez noted the possibility of a follow-up hearing on public health data standards and of a roundtable on the e-health vision and standards roadmap. The Subcommittee also will spearhead the new NCVHS Review Committee role approved earlier in the meeting.

The group discussed clinical perspectives on ICD-10, SNOMED, and their future trajectory and shared ideas about simplifying what physicians have to deal with. They also considered what role NCVHS might play in moving things in this direction. Acknowledging the importance of this discussion, Dr. Suarez said it should be continued in greater depth at another time. He also told members to watch for a high-level summary of the themes heard at the June 10 hearing.

Finally, he introduced Margaret Weiker, Chair of the ASC X12 Insurance Subcommittee, who presented background information and a proposal about adoption of XML TR3 Schema. The problem being addressed is growing fragmentation due to the proliferation of proprietary XMLs. In a letter, ASC X12 has proposed two possible paths forward: 1) that NCVHS recommend that OESS publish an official FAQ about this; and 2) that NCVHS recommend that the XML Schema be adopted as HIPAA compliant. After asking Ms. Weiker a series of questions, NCVHS members said they would take the request under advisement and develop a recommendation to refer to the full Committee in “a few weeks.” It was suggested that both an FAQ and a statement of HIPAA compliance might be in order. In response to a question, Ms. Weiker said X12 is essentially a public service organization that relies on volunteers to do its work, using funds received to cover costs.

– Day Two –

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

Ms. Kanaan reported on a series of key informant interviews she conducted on the topic of community data readiness. (Her slides are posted with the agenda.) The project relates to the Committee’s goal of helping data providers and connectors meet communities where they are by understanding the range of local needs and capacities for using data to improve community health. The interviews also were designed to inform planning for the Fall Roundtable on community data use.

Besides considering how to frame and operationalize the topic of data readiness, the interviews highlighted what communities need to know, what some leading-edge communities are already doing, and the types of assistance now being provided by county and state health departments and intermediary organizations. Community health needs assessment (CNHA) is a major focus of current local activity, leading to goal-setting and action. (Ms. Boothe later briefed the Committee on some of CDC’s work on CHNA; see below.) The interviewees suggested possible participants for the Fall Roundtable, and helped Ms. Kanaan identify questions for the Committee to address as it plans that meeting.

The group then discussed these topics, with particular attention to how to integrate the strands of NCVHS work on community data and how to use the Roundtable to advance the initiative. Members liked the idea of facilitating sharing among Roundtable participants from their varied perspectives as community activists, data connectors/intermediaries, and data suppliers. A major theme of the discussion was how to pursue the dual goal of enabling local people to do more for themselves and improving their access to expert assistance. Members stressed the pivotal importance for communities of focusing in on a key problem, the centrality of the questions communities are asking, and the need to identify the barriers to acquiring critical data.

On the Roundtable, members gravitated to a “community engagement” framing. There were suggestions of specific communities and community leaders who might be featured and of possible partners, as well as discussion of the types of participants to include. The planners were encouraged to look beyond the usual “traditional organizations” for participants and case examples. Dr. Green commented on the “imminent and urgent need” for a countervailing force to the prevailing fragmentation of effort, including efforts related to assessing and improving community health; and he observed that NCVHS could contribute through its convening role. Ultimately, the group converged around the idea of using the Roundtable to learn about solutions, align diverse perspectives, and clarify the federal role in facilitating local data use. In Dr. Mays’ words, the idea is “to approach health in a community context,” with an eye to the “intersections with the federal government.” Dr. Vaughan added the priority of “framing data so it is consumable for communities.” (See the transcript for many specific suggestions throughout this discussion.)

Dr. Blewett noted that although the focus here is on community-level data, there are still many gaps in state-level data, such as the National Health Interview Survey. Members discussed the possibility of developing an NCVHS recommendation to the Secretary on this concern.

At Dr. Stead’s request, Vickie Boothe then showed slides and briefed the Committee on the work of her CDC office on community health needs assessment and improvement planning. This work was launched in response to the ACA-based IRS requirement that non-profit hospitals conduct a CHNA every three years in collaboration with the community and state or local health department. One of her key messages to her trainees is that while “data are good, data do not give you the answer”; it is also necessary to have a dialogue with the community about what it thinks is important, and to identify the community’s assets. The ultimate goal is to “empower a community for sustainable action.” She noted that many organizations and agencies use similar structured approaches, including NACCHO, ACHI, and CHA.

Proposing a wellness frame rather than a disease-based one, Dr. Suarez noted the emerging theme of population health management in this large arena. Dr. Fulcher described the work of Community Commons in collaboration with federal agencies and health care organizations, and said the CHNA tool it developed is available to the public. Ms. Boothe said that “where the processes are falling apart” is that once communities have done the needs assessment and identified priorities, they are not sure what to do about them; they need information on evidence-based interventions and how to monitor and do mid-course corrections.

Briefing on the Working Group on Data Access and Use – Dr. Carr (slides)

This was Dr. Carr’s final meeting with NCVHS after ten years of service eight as an NCVHS member/Chair, and two as Chair of the Working Group. Dr. Mays now succeeds her as Working Group Chair.

In this session (with which the plenary session resumed), Dr. Carr reported on the recent Datapalooza, where she co-moderated a panel with Damon Davis of HHS. She traced the changes in this event over its four years, noting that her description applies not just to the event but to the health technology arena it showcases. What began with a top-down mandate for data liberation joined forces with bottom-up initiatives to move toward genuine “meaningful use.” The initial focus on “apps in search of users” has shifted to a “real world” focus on actual customers and their needs, now in a policy context that treats data as an enabler of the future. (She noted the resonance of these themes with earlier discussions in this meeting about leveraging the potential of data.)

She then commented on the evolution of roles with respect to data, starting with generator and aggregator and moving toward miner, integrator, and validator. (Dr. Tang later added ‘supplementer.’) Today’s emphasis is on engagement and collaboration rather than the more siloed character of data use and policy of the recent past.

Dr. Carr then profiled several of the apps and activities she found interesting at the Datapalooza, including Purple Binder, Pillbox, the redesigned Health Indicators Warehouse, and FDA’s release of adverse event data.

In the discussion, Dr. Fulcher expressed appreciation for the federal agencies that make all the data available for others to leverage and build on. Some members noted the preponderance of for-profit presenters at the Datapalooza, but others noted that it is moving in the right direction and still can provide public benefit. Dr. Vaughan suggested that this serve as a reminder to NCVHS to be inclusive of all partners as it plans its own activities and services. Dr. Walker pointed out that whether private or non-profit, the critical thing is to understand an audience’s needs well enough to “turn information into answers to goal-relevant questions” for that audience. Dr. Suarez noted the need to pay attention to the privacy implications of emerging technology. Dr. Tang suggested adding feedback loops to data sources. Dr. Chanderraj stressed the need for analytics to make the data useful.

Turning briefly to the subject of the Working Group itself, Dr. Carr pointed out that its members are consultants and that is the role they should play. She and Dr. Mays are working to re-energize the group, with a focus on providing immediate, in-the-moment feedback to HHS. She said Dr. Mays is “brilliantly positioned as the new Chair” because she works in this world and understands the needs. Dr. Mays, in turn, thanked Dr. Carr for her leadership. Dr. Green added his gratitude to her for “inventing the Working Group” and leading it to the present stage, and ending her tenure with an “elegant synthesis and transition.”

After a few final comments by Dr. Carr and Mr. Scanlon and by Ms. Jackson about next steps, Dr. Green thanked the Committee for “modeling civil discourse” and adjourned the meeting.


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

/s/       September 23, 2014

Chair       Date