The National Committee on Vital and Health Statistics was convened on September 21-22, 2011, the Embassy Row Hotel in Washington, DC. The meeting was open to the public.
Present:
Committee members
Lead Staff and Liaisons
Others
Note: The transcript of this meeting and speakers’ slides are posted on the NCVHS Web site, http://www.ncvhs.hhs.gov. Use the meeting date to locate them. For final versions of NCVHS documents discussed in the meeting, see “Reports and Recommendations.”
The meeting began with the customary briefings on recent activities at HHS, ONC, and CMS.
Much of the meeting was devoted to discussing, revising, and approving the four standards letters named above, and to discussing the tenth annual report to Congress on HIPAA implementation and a report on the NCVHS Community Health Information Project, both of which will be presented for action at the November meeting.
NCVHS subcommittees held breakout sessions, and reported on their plans toward the end of the full Committee meeting.
Finally, the Committee received a special presentation from Dr. Garth Graham of the Office of Minority Health about the HHS Action Plan to Reduce Disparities and related initiatives to eliminate health disparities.
All sessions are briefly summarized below.
Dr. Carr welcomed the participants, all of whom introduced themselves.
Mr. Scanlon hailed the presence of a full complement of 18 NCVHS members. He then briefed the group on HHS policyinitiatives and the Department’s data strategy and data planning. He referred to a revised version of the HHS Strategic Plan and its five goals, which represent cross-Departmental activities and priorities. The Department is currently updating its Strategic Plan, and will brief NCVHS on it in a future meeting. This plan intersects with Secretarial priorities, White House priorities, and other HHS strategies including the National Quality and Prevention Strategies. HHS always includes data experts to plan ways to measure progress.
Health reform is a major HHS priority (and goal 1 in the Strategic Plan). The Secretary is required to adopt data collection standards for sex, race, ethnicity, language and disability. HHS published draft data collection minimum data standards in July, and received more than 400 comments. Once adopted, the standards will be part of HHS-sponsored population health surveys and they will be proposed as a federal standard for minimum data collection in surveys. The hope is for the Secretary to adopt and publish the standards in the next few months, after which HHS and other agencies will include them in the next revision of pertinent surveys. (Also see Dr. Graham’s presentation, below.)
HHS was also asked to look at socioeconomic status (SES) and how people are approaching its measurement and what works in practice, with the goal of developing a minimum standard. HHS is looking at ten domains on which health systems change is expected to have an impact, including access to care, cost and affordability, insurance coverage, and vulnerable populations. It is identifying 5-10 measures in each of the domains in order to monitor how the effort is going.
The Department has also asked ASPE and the Data Council to look at ways to improve turnaround time on data collection, analysis, and sharing as part of the Open Government initiative. The idea is to align surveys, public health data, administrative data, EHR data, and other data systems and sources to support a broader vision for data availability.
Related to the budget, HHS is finishing FY2011; it is uncertain what the next two fiscal years will bring, but the Department hopes to continue to protect national survey investments. The Department is looking at new ideas such as using web-based data collection; (at CMS) ways to make administrative data more frequently available; and (at AHRQ) a quick-response telephone survey for the MEPS. HHS is also looking at dissemination, including how the research data centers are working.
HHS is always looking at special populations, especially those that are hard to represent statistically. It has a proposed strategy for race and ethnicity data. In addition, it has a project under way on data collection on the LGBT community, and has hosted listening sessions on this topic. It is also looking at linkage―what is being linked, and what other opportunities for linkage exist―and will have pilot projects in this area.
Members raised questions and comments about the following topics:
The HIT Policy Committee provided recommendations to ONC and CMS on meaningful use and standards and certification criteria for EHR technology, which are now under review in preparation for rule-making. A major one underconsideration was to extend Stage One of Meaningful Use. A hearing will take place on October 5-6. A work group is looking at data quality and anti-fraud in relation to certification.
The HIT Standards Committee is preparing for an important meeting with reports from work groups on recommendations for standards and certification criteria for EHR technology for Stage 2 of Meaningful Use.
ONC put out an advance notice of proposed rule-making (ANPRM) on metadata standards in the summer in response to the PCAST report last December. The comment period on the ANPRM on metadata standards closes soon, followed by an NPRM on standards.
Ms. Daniel reviewed the timing on regulations, on which ONC is working closely with CMS. One on governance for the NHIN has been particularly challenging, and ONC will put out an ANPRM to get more input.
ONC has just launched a new initiative called Query Health to establish standards and approaches for distributed population queries of electronic health information. It is getting input from both the public and private sectors about what issues need to be addressed. This is one of the five goals in ONC’s strategic plan, regarding how to use electronic health information to support a learning health system. This is an open process, with participation encouraged. The final ONC strategic plan was released 10 days ago; it is intended to be “an interactive and living document.” Ms. Daniel invited NCVHS to provide input on the plan.
Finally, ONC has just hosted a Consumer eHealth Summit as part of Health IT Week, with broad participation. The focus is on making it easier for consumers to get access to their health information in a timely fashion. It seeks to align public and private sector activities to promote consumer access to usable, actionable information for improving their health. The Secretary has proposed regulations to remove regulatory barriers to patient access and enable access to lab data directly from labs. Attention is also being given to protection issues in a PHR context. Three major PHR vendors have pledged to observe the recommended protections. ONC has announced a challenge grant related to access to information.
Ms. Daniel said she would send the Committee information on the data segmentation initiative.
Medicare has been working for 18 months on the Blue Button for MyMedicare.gov. Without any PR effort yet, there have already been 300,000 downloads. Medicare beneficiaries can now download diagnosis and procedure information, and the resource will become increasingly robust; and outreach and promotion will now begin.
CMS is working closely with ONC on the Meaningful Use regulation. Medicare and Medicaid will make incentive payments for meaningful use; and registrations for that program have begun.
Under the ACA, the first regulation, on operating rules for eligibility and claims status, went out in July, and has generated comments. CMS is working on the next one, on a standard for electronic funds transfer, expected by the end of the year. A regulation on a health plan identifier also will come out by the end of 2011.
Finally, Rob Tagalicod is the new Director of the Office of eHealth Standards and Services. In the future, he will share an overarching CMS strategy in this area with NCVHS.
Dr. Francis expressed concern about privacy proofing and authentication for the blue button, and she and Ms. Doo agreed to follow up on this.
The Community Health Information Project is a joint project of the Population Health and Privacy/Confidentiality/Security Subcommittees. The four presenters―the Subcommittee co-chairs and the writer of the report―talked through a set of slides describing the project’s origins and purpose andthe major themes and points of the report.It will be on the agenda for discussion and approval at the November NCVHS meeting.
The project has deep roots in the history and mission of NCVHS, and cuts across the interests of all subcommittees. Its purpose is to determine what communities need to have and do to become learning systems for health, and how the Federal government and others can help. The guiding vision that emerged is to get usable data into the hands of communities and ensure that they have the capacities to use local data to improve local health. The host subcommittees held workshops in February and May, 2011, and talked with the representatives of 14 communitiesfrom around the U.S. that are using local data to drive policy, planning, and change for better community health.
This presentation was followed by a lively discussion, with many suggestions offered. The discussion resumed later that day at the joint meeting of the two responsible subcommittees, attended as well by several other NCVHS members.
The Subcommittee co-chairs presented the first reading of the draft tenth report to Congress on HIPAA administrative simplification. A later version will come before NCVHS at its November meeting. The presenters showed slides outlining the background, concept, content, and process, and then invited discussion. There are plans to expand the executive summary beyond its usual length.
Regarding a topic not addressed in the report, it was noted that a key message of HIMSS to Congress recently was that the discussion of a unique patient identifier should be reopened. Besides suggesting comments on this unfinished business, members also encouraged that the report reflect on the lessons learned from the HIPAA journey and suggest goals for semantic interoperability.There were also suggestions to help make HIPAA an “enabler” and then monitor its impact in the future. It was also suggested that the report, or a “primer” version, use accessible and commonly understood language.
The co-chairs of the Subcommittee on Standards presented three letters for review and discussion on the following subjects:
In each case, they reviewed the information in the letter and then focused on the recommendations. NCVHS members discussed each of the documents, which will be revised as needed and presented for action on day two of this meeting.
Following transitional comments by Dr. Carr, the Committee broke into subcommittee sessions.
Following introductions, Dr. Carr announced that Linda Kloss had agreed to become the Co-Chair of the Subcommittee on Privacy, Confidentiality and Security. She then acknowledged the contributions of CMS liaison, Karen Trudel, who is moving into a different role at CMS. Robert Tagalicod is her successor. Dr. Carr also congratulated NCVHS Executive Secretary Marjorie Greenberg for being awarded the Elliot Stone Award for Excellence in Health Data Leadership by the National Association of Health Data Organizations (NAHDO). NCVHS has been invited to present at the NAHDO annual meeting on November 15, when the award will be presented to Ms. Greenberg.
Dr. Suarez presented revised versions of the standards letters discussed the previous day, explaining the revisions in each.
The Committee unanimously passed a motion to accept the letter on electronic acknowledgment transactions, as revised.
The Committee unanimously passed a motion to accept the letter on the transition to the next version of HIPAA standards and ICD-10 code sets.
The Committee unanimously passed a motion to accept the letter on standards and operating rules development and maintenance process under HIPAA.
The final versions of the letters are posted on the NCVHS website.
After explaining the background, Dr. Suarez presented a preliminary draft of a letter commenting on the advance notice of proposed rulemaking (ANPRM) referenced above. The ANPRM is about metadata standards, and follows as a next step from the PCAST report. There was extensive and detailed discussion of the letter and the issues involved.
The Committee unanimously passed a motion to accept the comments letter on metadata standards, and authorized Dr. Carr to do final formatting.
Subcommittee on Standards―Dr. Warren
The Subcommittee is working on the EFT and ERA standards and will soon review the operating rules submitted and develop recommendations to the Secretary, for action at the November meeting. This is the first operating rule the Subcommittee is reviewing, and it launches a new process for NCVHS with respect to operating rules. The Subcommittee also will follow up with the HIPAA report to Congress, for November action.
The Subcommittee is planning hearings in November on claims attachments, Section 10109 of the ACA, and on the standards and operating rules maintenance process. Members of the HIT Policy Committee and Standards Committeewill be invited to attend because they share responsibility for advising on the second issue with respect to certain additional questions about uniformity in financial and administrative activities and items.
Subcommittee on Quality―Dr. Middleton and Dr. Tang
The Subcommittee plans to flesh out a picture that integrates the policy initiatives relevant to NCVHS, and to use the roadmap of policy activities to identify opportunity points for suggesting guidance. There is an intersection between the HIE, HBE, PHR and EHR activities that is relevant to the HHS Community Health Data Initiative (CHDI), and the Subcommittee wants to help shape the project in that context. It plans a hearing in late2011 or early 2012.
The Subcommittee is thinking about a construct it calls the “lifecycle of health conditions/health management,” which encompasses everything that can affect a person’s health, including social determinants, with the idea that a measurement system could be devised to track these factors across a person’s lifetime, as well as on a population level for a community. The Subcommittee also wants to revisit the Committee’s meaningful measures recommendations in the light of HITECH and ACA. It is especially interested in making measures meaningful for consumers and helping consumers find the health information resources mostrelevant to them for improving their health. The perspective will fold in the community perspective as well as data relevant to individuals. One application of both of these perspectives is to try and identify what data incommunity health assessments are relevant to the individual for personal health management. Part of the purpose is to direct more attention to how the “liberated” data in the CHDI can be useful and relevant to consumers. These quality-related endeavors will also be linked to HHS priorities. The Subcommittee will announce its more specific plans at theNovember NCVHS meeting.
Subcommittee on Population Health and Subcommittee on Privacy, Confidentiality and Security―Ms. Jackson
The subcommittees held a joint meeting that many full Committee members attended, reflecting the cross-cutting nature of the Community Health Information Project. The group engaged in a long and fruitful discussion of the forthcoming report, with many new ideas and suggestions put forward. There will be a decision in November about whether to follow the report with a letter to the Secretary.
Dr. Mays noted that there was also discussion of NCVHS possibly generating advice to the Department on social determinants, LGBT, and SES data collection, which the Data Council is starting to work on. Ms. Greenberg offered to talk with Mr. Scanlon about the Data Council’s time frame and how NCVHS might contribute. Dr. Cohen suggested that NCVHS might help operationalize the domains, particularly with respect to data available for population health. The idea of a briefing in November was suggested.
Subcommittee on Privacy, Confidentiality and Security―Dr. Francis
The Subcommittee will be working on a response to the ANPRM on human research subjects.
HHS released its action plan to reduce health disparities in April 2011. It is part of a group of synergistic activities in a National Initiative to Eliminate Health Disparities. For example, the National Stakeholders Strategy, National HIV/AIDS Strategy, and the National Prevention Strategy are other important components. The National Prevention Council reflects recognition of the range of social determinants of health through the presence of seventeen Federal departments and Cabinet secretaries. Eliminating health disparities is one component.
Data is a big focus of the HHS disparities action plan. The plan focuses on spending and activities, and also on increased coordination in priority areas. Data are being handled through the Data Council. The disparitiesaction plan was developed as a response to a series of meetings with stakeholders. It is built on the health equity provisions of the ACA, and organized to align with the Secretary’s priorities: heightening the impact of HHS policies, programs, and resources; increasing the availability, quality, and use of data; measuring and incentivizing better health care quality; monitoring and evaluating the Department’s progress. It is also aligned with HHS goals: to transform health care; strengthen the health workforce; advance the population’s health; advance scientific knowledge and innovation; and increase the efficiency, transparency and accountability of HHS programs.
One broad focus is implementing the ACA, with an emphasis on improving access to care and targeting minority communities. OMH is working with the National Coordinator on targeting health IT strategies to reduce disparities. This includes a number of efforts to engage and collaborate with the private sector. In addition, OMH is emphasizing the use of community health workers and promotoras,as well as translation services. Its population-specific health interventions include Community Transformation grants. Another part of the plan relates to disparities-oriented activities in comparative effectiveness research (AKA patient-centered outcomes research).
Turning to data, Dr. Graham noted that ACA Section 4302 requires HHS to establish data collection standards within two years for five demographic categories: race, ethnicity, sex, primary language, and disability status, built from the OMB standards, and to use the data for analysis and results. OMH and the Data Council co-led an effort to develop an approach to implementation, taking budget constraints into consideration. Work is also proceeding, but under less time pressure, on LGB and/or LGBT data, with NCHS doing some testing. There is considerable attention to streamlining processes within the Department and OMH. There have been three listening sessions to get input on standardized data in LGBT areas; and they also elicited public comments on the recommended standards for the first five categories and received 466, most of them positive.
Dr. Graham then outlined the proposed standards (see slides) and the timeline for developing the data proposals.The HHS ACA Section 4302 Working Group is tasked with providing recommendations for data standards and additional demographic data, and it will issue a final rule on proposed data collection standards in Fall, 2011. Plans for analyzing and reporting on data collected will be released within 18 months of adoption of the data collection standards.
Dr. Carr asked Dr. Graham to name and comment on the status of the top disparities issues, and he named disparities in access to care, with uninsurance as a contributing factor; and neither of them is getting better. Dr. Francis asked if there are ways NCVHS can help address privacy, trust, and data protection issues in a community context to enable better data and data use. Dr. Graham said his major request of NCVHS is to help HHS deal with people’s concerns about data protection and articulate how data are protected as well as the benefits of data collection and use. This is particularly an issue in the context of community-based participatory research. He said, “We need better explanation to communities of what we’re doing with their data and how important their data is, and part of that is understanding how we protect their data.” He later reiterated that OMH needs “a lot of input and thought” from NCVHS about privacy ―both protection and “generic communication” on the benefits of data collection and use.
Dr. Suarez noted the language issues involved in doing this effectively so that non-English-speaking Americans can be reached, as well. He also asked how the new 4302 standards will be incorporated into Meaningful Use requirements for EHRs. Dr. Graham said they have been talking with ONC about that, and it will involve a staggered approach to gradually integrating the two processes.
Dr. Cohen said that Massachusetts has learned through its work on collecting race and ethnicity data that training is critical to making the encounter constructive, not adversarial. He asked if HHS was dedicating resources to training for those collecting the data. Dr. Graham replied that neither HHS nor OMH budgets have increased in recent years, so it has to “move this out very slowly” and use local networks for training. However, it plans to incorporate training as much as possible.
On LGBT data, Dr. Mays suggested that OMH look at the model of data collection in this area, through the Williams Institute and other sources.
Dr. Nichols commented on the merits of having a multiracial category. He and Dr. Graham discussed the complexities and nuances of categorization in several demographic areas.
Ms. Greenberg asked about the timetable for SES, and was told it is six months to a year. It is the next area to be tackled.
Dr. Graham and Dr. Tang discussed alignment between IOM recommendations and forthcoming race and ethnicity standards, and the practical and fiscal issues involved in going beyond a certain level of granularity. Dr. Tang noted that the granular codes could be stored in the EHR, in any event; and he and Dr. Cohen noted that the data collection is not difficult, given adequate training.
Dr. Suarez said that the Office for Civil Rights is developing a national campaign to educate people about the benefits of EHRs and privacy and security protections for them.
After a brief discussion of the November full Committee agenda, Dr. Carr adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ 11/17/2011
____________________________________________________
Chair
Date