Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
February 24-25, 2015
National Center for Health Statistics, Hyattsville, MD
MEETING MINUTES
The National Committee on Vital and Health Statistics was convened on February 24-25, 2015 at the National Center for Health Statistics in Hyattsville, MD. The meeting was open to the public.
Present:
James Scanlon, ASPE, Exec. Staff Director, Acting Chair
Committee members
John J. Burke, MBA, MSPharm. (by phone)
Raj Chanderraj, MD, FACC (by phone)
Bruce Cohen, Ph.D.
Llewellyn Cornelius, Ph.D.
Alexandra Goss
Linda Kloss, RHIA, CAE, FAHIMA
Denise Love
Vickie Mays, Ph.D., MSPH
Sallie Milam, J.D., CIPP/G (by phone)
David Ross, Sc.D.
William W. Stead, M.D.
Walter Suarez, M.D.
Ob Soonthornsima
James Walker, MD, FACP (by phone)
Absent:
Len Nichols, Ph.D.
Lead Staff and Liaisons
Debbie Jackson, NCHS, Interim Exec. Secretary
Terri Deutsch, CMS
Maya Bernstein, ASPE
Others (not including presenters)
Katherine Jones, NCHS
Marietta Squire, NCHS
Susan Queen, ASPE
Michelle Williamson, NCHS
Tammara Jean Paul, NCHS
Gail Horlick, CDC
Leslie Pickering Francis, J.D., Ph.D., Data WG
Leah Vaughan, M.D., Data Working Group
Paul Tang, Data Working Group (by phone)
William Alfano, BCBSA
Gwyn Smith, VA
Renee Gina, NCHS
Suzanne Niemeyer, Ketchum
Raymond Vogel, VA
Michael DeCarlo, BCBS
Gail Kocher, BCBS
Dan Rode, Dan Rode & Assoc.
Susan Kanaan, consultant writer
Note: The transcript of this meeting and speakers’ slides are posted at ncvhs.hhs.gov. Transcripts are linked to the meeting calendar, and slides to the agenda.
EXECUTIVE SUMMARY
ACTIONS
The Committee unanimously passed a motion approving the summary of the Roundtable on Supporting Community Data Engagement, as revised. It will be posted on the NCVHS website and attached to forthcoming recommendations to the Secretary as a background document.
Updates from the Department
- ASPE―Jim Scanlon
- CMS―Shana Olshan and Elizabeth Holland
- ONC―Jodi Daniel (slides)
- ONC Privacy and Security Update―Lucia Savage, ONC Chief Privacy Officer (slides)
- OCR Update and Outreach―Rachel Seeger (slides)
Mr. Scanlon reported on personnel news, recent initiatives, the FY15 budget, and the initiative to evaluate and monitor the impact of the ACA. He predicted that the evolving interoperability roadmap would be key to delivery system reform and improved health. NCVHS members commented on expanding access to the new research data center and improving communication and coordination between NCVHS and the Data Council.
Ms. Olshan, who directs the newly formed National Standards Group (NSG), noted a number of recent staffing and structural changes at CMS. Ms. Holland gave a short update on the HITECH EHR incentive program. One priority of the NSG is revisiting the many administrative simplification initiatives and all NCVHS recommendations since 2012. On ICD-10 end-to-end testing, Ms. Deutsch later announced that CMS’ ICD-10 testing for Medicare was very successful.
Ms. Daniel gave an update on ONC rule-making, the HIT Federal Advisory Committees, the ONC strategic plan, and the interoperability roadmap. ONC is working to set the pace for the Federal government’s role in HIT over the next 5-10 years. It has reconstituted the ONC advisory committees to better align with the new directions, and is working for better coordination with NCVHS. She commented on three documents: the Standards Advisory, the 2015-2020 Federal Health IT Strategic Plan, and the Interoperability Roadmap (“the major priority of the office”). The final roadmap will be published in late Spring or early Summer 2015. NCVHS members talked with Ms. Daniel about how NCVHS and ONC can better align their activities, how to think about both HIPAA and interoperability, and a possible supplemental view of administrative processes from NCVHS to help elevate the discussion about interoperability. She promised to follow up on several suggestions.
Focusing on the privacy theme in the roadmap, Ms. Savage noted current rules (laws, regulations, and policies) on privacy vary widely while the states are philosophically aligned. ONC wants to figure out how to take advantage of computing and machine learning to create “computable privacy” that digitally connects patients’ EHR data to their consent choices and tells health care providers and their HIT systems what to do when a choice is not documented for the individual. The roadmap is designed to achieve this within 10 years.
Ms. Seeger reported on several “significant efficiencies” implemented recently by OCR: a Customer Response Center, language access and website improvements, the Central Intake Unit, and a new Complaint Portal. She also described plans for 2015. OCR remains committed to implementing an effective audit program; watch for announcements about that on the OCR website.
Population Health: Supporting Community Data Engagement―Drs. Cohen & Stead
Dr. Cohen presented the draft summary of the October Roundtable on Community Data Engagement. After discussion and a few suggestions, the Committee unanimously passed a motion approving the summary as revised. It will be posted on the NCVHS website, with a notice to Roundtable participants, and attached to forthcoming recommendations to the Secretary as a background document. The co-chairs also laid the groundwork in this session for a discussion to be held on day two of this meeting (see below).
Review Committee on Data Standards―Dr. Suarez (slides)
The Subcommittee on Standards, serving as the ACA Review Committee on behalf of the full Committee, will hold the first hearing for this purpose in mid-June (tentative dates: June 16-17). The aim is to set the baseline for the status of transactions and operating rules now being implemented under HIPAA, in order to follow the process as it evolves. The review will be very high level, and focus on issues not being addressed through the standards development process, with an eye to what recommendations might be made to the Secretary.
Health System Monitoring Project―Dr. Suzie Burke-Bebee, ASPE (slides)
The Health System Measurement Project (HSMP), which was requested by the White House, is designed to enable high-level monitoring of the impact of the ACA by tracking a limited number of indicators. Currently there are 44 measures covering ten topics, aligned with HHS’ strategic planning efforts. Generally, they use HHS data, with easy visualizations and download and explore capabilities. Dr. Burke-Bebee shared a spreadsheet showing the data sets and sources, and showed a number of screen shots. Noting that HHS is enhancing the website, she invited members to suggest improvements. Members offered several comments and suggestions.
Standards Subcommittee Projects and Work Plan, and NCVHS plans to plan ―Dr. Suarez and Mr. Soonthornsima
After reviewing the agenda for the February 26 hearing on HIPAA and ACA Administrative Simplification, Dr. Suarez described the Subcommittee’s plans for 2015. This prompted a broader discussion among Committee members of possible approaches to planning and prioritizing NCVHS work over the coming years, which they agreed was badly needed. The process will begin at the May meeting, preceded by an exec-Subcommittee pre-planning teleconference, and it is expected to continue beyond the May meeting. At the end of this meeting, Ms. Goss reported that she and Ms. Deutsch would draft a baseline document for a planning process aimed at driving convergence across workgroups and committees and helping the Committee manage its workload.
Subcommittee on Privacy, Confidentiality and Security―Ms. Kloss (slides)
This session addressed plans for the May 6 meeting on the HIPAA Section 1179 Exemption for Financial Institutions, dissemination plans for the community data stewardship toolkit, and the 2015-16 work plan. Given the ONC request for comments on the interoperability roadmap, Ms. Kloss suggested that NCVHS either support the recommendations from ONC’s FACAs or say something else. She added that this activity should take precedence over other possible NCVHS projects.
Subcommittee on Population Health―Drs. Cohen and Stead (slides)
Dr. Cohen enlisted members in identifying ideas for supporting community data engagement that are ready for development into recommendations to the Secretary, and ones that might become recommendations after further work and/or that lend themselves to an NCVHS convening activity. This exercise is a step toward development of a letter to the Secretary, which the Subcommittee hopes to present for approval at the May NCVHS meeting.
The group then moved into a discussion of the evolving NCVHS Framework and delved into questions about the audience, purpose, scope, and potential applications of the project. Dr. Stead explained that the Framework is intended to provide a taxonomy that makes explicit the assumptions about datasets that are now unstated, to make it possible to use and reuse the datasets in systematic, precise, and standardized ways. The target audience is people with technical expertise in data and information. NCVHS members agreed to allocate plenary time in the May meeting to more comprehensively discuss this work and its potential applications.
National Center for Health Statistics (NCHS) Update―Charlie Rothwell, Director
Mr. Rothwell presented an upbeat picture of the Center’s staffing, budget and budget prospects, and the state of its health statistics programs. He called the fact that 30 states now provide 80 percent of their data within 10 days of the event “one of the greatest success stories in my time in public health.” In conclusion, he expressed dismay at the measles epidemic and stressed the need for a public conversation about immunizations and the public health risks of avoiding them. He stressed that NCHS has the data to tell the factual story of what was conquered and what could happen if Americans are not immunized.
Many NCVHS members thanked Mr. Rothwell for his leadership and praised developments at NCHS such as “the revolution in e-vitals” and dramatic improvements in timeliness. They also expressed interest in having a demo of e-vitals reporting at a future NCVHS meeting. Besides endorsing the idea of spreading the story of public health issues and actions, members commented on the need for more complete violent death data, and on the opportunity for NCHS leadership in providing methodological assistance to communities in a way that “teaches them to fish,” as well as guidance to states on forecasting and transitioning to ICD-10.
Health Insurance Coverage: Early Release Program Update―Robin Cohen, PhD, NCHS (slides)
The 100 new questions and larger sample size that enhanced the Health Interview Survey in 2011 now enable quarterly health insurance estimates, with a six-month lag. Dr. R. Cohen presented highlights from the data for the first 6 months of 2014, with breakdowns for age group, race/ethnicity, sex, poverty, and exchange plan enrollment. Dr. Bruce Cohen urged NCHS to be prepared to work with the states and CDC to explain any differences among estimates stemming from different sources, in order to answer questions likely to come from governors, health commissioners, and others.
Briefing on the Working Group on Data Access and Use―Dr. Mays (slides)
Dr. Mays reviewed the charge and activities of the Working Group, noting its role in assisting and advising HHS. It is developing guiding principles on data access and use, which it will suggest that HHS agencies think about as they develop their datasets. She described the draft principles, and members noted the convergence between this effort and the Framework Project.
―DETAILED SUMMARY―
―Day One―
Welcome and Introductions
Because the next NCVHS Chair was not yet appointed, Executive Staff Director James Scanlon chaired this meeting. He welcomed two new NCVHS members:
- Denise Love, Executive Director of the National Association of Health Data Organizations and co-founder and co-leader of the All-Payer Claims Database Council
- David Ross, Sc.D., Vice President of the Taskforce for Global Health and Director of the Public Health Informatics Institute.
Updates from the Department
- ASPE―Jim Scanlon
In personnel news, Dr. Vivek Murthy has been confirmed as Surgeon General and Sean Cavanaugh will be Acting Administrator of CMS when Marilyn Tavenner steps down in March. ASPE has released a revision of its open government plan. The Affordable Care Act has completed its second open enrollment, and the Department is now determining who is still uninsured. Recent initiatives include one on preventing and treating Ebola and one to prevent the morbidity and mortality associated with opioid misuse and abuse. HHS also is looking at delivery system reform related to quality, care coordination, accountability, and population health management. It has objectives and metrics for all of these plans and initiatives. It continues to work on the National Quality and Prevention Strategies. It will observe the 30th anniversary of the Secretary’s Report on health disparities in June 2015, and also mark the fifth anniversary of the ACA. On the FY15 budget, most of the major data collection systems or general purpose health statistics systems are funded. Mr. Scanlon commented on the initiative to evaluate and monitor the impact of the ACA, and on the HHS data strategy, which is directed toward integration and alignment of the data from EHRs, administrative data, and surveys. He predicted that the interoperability roadmap would be key to delivery system reform and improved health.
Members commented on expanding access to the new research data center and improving communication and coordination between NCVHS and the Data Council.
- CMS―Shana Olshan and Elizabeth Holland
Ms. Olshan, who directs the newly formed National Standards Group, noted several recent staffing and structural changes at CMS. Ms. Holland gave a short update on the HITECH EHR incentive program, which she directs. It plans to release the proposed rule for stage three of Meaningful Use in March; a separate rule will come out after that with modifications responding to provider concerns. She reviewed the plans for the future of this program.
Ms. Olshan then described recent realignments at CMS, including creation of the Office of Enterprise Information (OEI), which has five groups including the National Standards Group (NSG, her group) and the Information Security and Privacy Group. One priority of the NSG is to revisit the many administrative simplification initiatives and all NCVHS recommendations since 2012. On ICD-10, Medicare fee-for-service has conducted end-to-end testing and will release the results very soon. (Later in the meeting, Ms. Deutsch announced that CMS’ ICD-10 testing was very successful, and “Medicare and CMS are ready for ICD-10.”) Two more rounds are planned in April and July, for a total of 2,550 unique testers. CMS continues to brief Congress on ICD-10; and a recent GAO report summarizes the steps CMS is taking to prepare for ICD-10.
- ONC―Jodi Daniel, Director, Office of Policy (slides)
Ms. Daniel reported on ONC rule-making, the HIT Federal Advisory Committees, the ONC strategic plan, and the interoperability roadmap. She said Dr. DeSalvo is still very engaged in the work of ONC, and has put in place new staff to support the Policy Office including Dr. White as Acting Deputy National Coordinator and Co-chair of Health IT Standards Committee and Michael McCoy as Chief Health Information Officer. ONC has released a number of new documents and is working to set the pace for the federal government’s role in HIT over the next 5-10 years. It has reconstituted the ONC advisory committees to better align with the new direction and is working for better coordination with NCVHS. It has asked both FACAs for input on the federal HIT Strategic Plan, the Interoperability Roadmap, and the Standards Advisory. It will hold a hearing of the Advanced Health Models Workgroup on May 13 to look at the use of data beyond the clinical setting.
She showed a timeline with seven FACA milestones in late 2014 and the first three quarters of 2015, noting that there are openings on the Policy and Standards Committees. She then commented on the new documents. The Standards Advisory is a guidance document, not a regulation, and ONC plans to update it annually to create an “iterative, predictable process.” For the 2015-2020 Federal Health IT Strategic Plan, the final plan will be published in the late Spring 2015; and Federal partners will convene to plan implementation, review public comments, and determine outcome metrics in Winter 2015. A major focus of the new plan is better coordination across the care continuum. The biggest piece of work is the Interoperability Roadmap, the major priority of the office and one that has taken a year to put together. It builds out one of the five goals in the strategic plan and has milestones for 3, 6, and 10 years, with the vision of a “broad-scale learning health system” by 2024 and five building blocks to support the milestones. After the public comment period ends on 4/3/15, ONC FACA workgroups will review key sections of the roadmap. Ms. Daniel said ONC sees this as a national rather than Federal roadmap, and it has calls to action for private stakeholders and a vision for a collaborative public-private effort. The final roadmap will be published in late Spring or early Summer.
Discussion
Dr. Cohen asked how NCVHS and ONC could align their activities and build on each other’s strengths. Ms. Daniel cited the traditional NCVHS role of looking at the longer view and helping figure out how to get there, especially with reference to longer-term implementation of the interoperability roadmap. Mr. Scanlon noted the possibility of an ONC liaison to NCVHS. Mr. Soonthornsima asked how ONC’s models can reflect “what’s actually happening in the real world,” and Ms. Daniel said ONC is working closely with CMS and other Federal partners to figure out the levers that can support interoperability. Ms. Goss asked why ONC carved out HIPAA when it is trying to achieve interoperability; Ms. Daniel said ONC was focused on “the biggest gap” but welcomes the Committee’s comments on “how to think about them together.” Dr. Stead commented on the cognitive interoperability issues in play and the fact that “we’re still losing the patient in the data.” Noting the dichotomy between the clinical and administrative worlds and the effort to increase alignment and continuity, Dr. Suarez suggested that NCVHS provide a supplemental view of administrative processes to help “elevate the discussion about interoperability.” Ms. Daniel promised to follow up on several of these ideas.
- ONC Privacy and Security Update―Lucia Savage, ONC Chief Privacy Officer (slides)
Ms. Savage focused on the privacy theme in the roadmap and the reality that current rules (laws, regulations, and policies) on privacy vary widely. While states are philosophically aligned, their privacy and consent rules are diverse, as are some statutes, regulations, executive orders, and organizational policies. She noted that the current privacy rules environment in the US has at least seven layers (slide 5). ONC wants to figure out how to take advantage of computing and machine learning to create “computable privacy” that digitally connects patients’ EHR data to their consent choices and tells health care providers and their HIT systems what to do when a choice is not documented for the individual. The roadmap is designed to achieve this within 10 years. The structure of computable privacy rests on a foundation of the uses permitted under HIPAA; the next layer (step) is to bring standards and structure to the environment in which choice has been offered; and the third layer (which she called “the long runway”) is to harmonize “granular choice” under state law in recognition of states’ philosophical alignment.
Ms. Kloss offered the help of the NCVHS Privacy Subcommittee regarding the background rules that still are needed to give patients basic choices.
- OCR Health Information Privacy Update―Rachel Seeger
Ms. Seeger reported on several “significant efficiencies” implemented recently by OCR: a Customer Response Center, language access and website improvements, the Central Intake Unit, and the new Complaint Portal. She also described plans for 2015. OCR is projected to receive some 17,000 complaints from consumers in FY2015. The efficiencies will enable more efficient response to phone calls and an easier way for consumers to file online complaints, and free the regional centers to handle investigations and deal with the most serious cases. OCR’s website is the most trafficked spot on HHS.gov but is not easy to use; so it is now being overhauled, using audience segmentation to separate consumer- and professional-related materials. In the first month of the new online complaint portal, user satisfaction rates increased from 64 to 84 percent. The plans for 2015 include continued strong enforcement and a final NICS rule. OCR also is committed to implementing an effective audit program; watch for announcements about that on the OCR website.
Dr. Suarez commented on the need to anticipate the implications of new technology capabilities such as data segmentation and data provenance, and to provide guidance and public education about them. Ms. Seeger said OCR and ONC have had robust discussions about this.
Supporting Community Data Engagement―Drs. Cohen and Stead (slides)
After briefly describing the October 2014 Roundtable, Dr. Cohen presented a list of possible priorities, strategies, and next steps for supporting community data engagement, generated by Roundtable participants, for use in setting general directions for the Committee. Committee members will be asked later in the meeting to sort the list into 1) ideas ready for development into recommendations, 2) ideas that warrant further work by the Committee, and/or 3) ideas that lend themselves to an NCVHS convening activity. Discussion of the Roundtable summary led to a few suggested wording changes, along with suggestions for further work in some areas. There were comments about the appropriate federal role and the “sweet spot” for NCVHS. The Committee then unanimously passed a motion approving the Roundtable summary, as revised. It will be posted on the NCVHS website, with a notice to Roundtable participants, and attached to forthcoming recommendations to the Secretary as a background document.
ACA Data Standards Review Committee―Dr. Suarez and Mr. Soonthornsima
The Subcommittee on Standards, serving as the ACA Review Committee on behalf of the full Committee, will hold the first hearing for this purpose in mid-June. The aim is to set the baseline for the status of transactions and operating rules now being implemented under HIPAA, in order to follow the process as it evolves. Ultimately, the Committee will evaluate the status of the transactions, and it will ask industry representatives to suggest criteria. Dr. Suarez stressed that the Subcommittee will “keep things at a very high level” and focus on issues not being addressed through the standards development process, with an eye to what recommendations might be made to the Secretary. Topics include whether the transactions are being used and in what volume; current issues with the transactions; whether implementation has saved any money; and what efficiencies have been achieved. With the four sets of operating rules, the questions concern how they are being implemented. Mr. Soonthornsima reiterated that while evaluation will be both quantitative and qualitative, it will stay at a very high level.
Ms. Jackson stressed that this is a full Committee activity and encouraged members to listen to the webcast. June 16-17 were reserved as tentative dates for the hearing.
Health System Monitoring Project―Dr. Suzie Burke-Bebee, ASPE (slides)
The Health System Measurement Project (HSMP) was designed to enable high-level monitoring of the impact of the ACA by tracking a limited number of indicators. It was requested by the White House. Currently there are 44 measures covering ten topics (access, quality, cost, and so on), aligned with HHS’ strategic planning efforts. Generally they use HHS data, with easy visualizations and download and explore capabilities. Dr. Burke-Bebee shared a spreadsheet showing the data sets and sources, and showed a number of screen shots. Noting that HHS is enhancing the website, she invited members to send her suggestions for improvements.
In the discussion, members offered several suggestions, asked about tracking and evaluating usage, and suggested a few data sources and topics. The group discussed the issues with the timeliness of some data, which Mr. Scanlon said is as frustrating for HHS as for other users; he added that HHS is working to populate the site with the most recent data possible. The group discussed the merits of this high-level view for general usage (not necessarily for researchers), and members expressed hope that it can be sustained. Mr. Soonthornsima observed that including measures with transformative potential will help drive sustainability. Dr. Mays suggested adding data from the VA and the Departments of Defense and Justice, if possible.
Standards Subcommittee: Projects and Work Plan―Dr. Suarez and Mr. Soonthornsima
Dr. Suarez began by reviewing the agenda for the February 26 hearing on HIPAA and ACA Administrative Simplification. After the hearing, the Subcommittee will review all the testimony and develop recommendations to the Secretary regarding the pending operating rules, which have not yet been adopted. Regarding evaluation of ACA standards, he said the Subcommittee would formulate a strategy for evaluation and bring it to the full Committee before June.
Turning to the work plan, he described the plans for 2015. In addition to the activities described above, the Subcommittee plans to convene a hearing focusing on public health standards and a workshop on population health management. Dr. Cohen urged that the focus for the latter be made very explicit, given the varied definitions of the term. Another new topic the Subcommittee may explore (among others) is transparency.
The group moved into a discussion of possible approaches to planning and prioritizing NCVHS work over the coming years, which they agreed was badly needed. (See transcript for details of the discussion.) Ultimately, they decided to begin the process at the May meeting, preceded by an exec-Subcommittee pre-planning teleconference. It is expected that the planning process will continue beyond the May meeting. Ms. Goss suggested creating a short, high-level summary of the thinking behind the detailed consolidated work plan. (More on this below.) Mr. Scanlon reminded members that “plans have to be nimble,” and suggested that the Committee focus on “working smarter and using our best thinking” rather than expecting to be given more resources.
Subcommittee on Privacy, Confidentiality and Security―Ms. Kloss (slides)
This session addressed plans for the May 6 meeting on the HIPAA Section 1179 Exemption for Financial Institutions, dissemination plans for the community data stewardship toolkit, and the 2015-16 work plan. A wide-ranging discussion of the first item resulted in some modifications to the stated objectives and evolving agenda for the meeting, which was suggested by ONC and OCR. The Privacy Subcommittee is interested in learning about evolving industry practice in this area, and will supply invited participants with questions to facilitate the fact-finding. It has identified a 2004 white paper by Kirk Nahra, “Financial Institutions and the New HIPAA Rules,” as presenting a good framing of the issues.
The goals for broad toolkit dissemination are to reach community stakeholders and those who support their work; to encourage stakeholders and advisors to use the toolkit; to gather examples of how it is being used; and to solicit feedback on how it can be strengthened and applied. A range of suggestions from the Data Working Group have been organized into a provisional timetable (see slides). Ms. Jackson said a cover design that positions the toolkit in the family of NCVHS privacy/stewardship publications is being developed. Mr. Scanlon suggested presenting the toolkit at the Datapalooza; and OCR will do a LISTSERV announcement to help push it out. A more concerted launch remains a possibility.
Finally, the group discussed the Privacy, Confidentiality and Security work plan for the coming year and beyond. Ms. Kloss asked for discussion of the possibility of surveying the state of HIPAA understanding and implementation among small providers and other covered entities, generating a few comments. Mr. Scanlon pointed out that ONC is asking for a comment on the interoperability roadmap, and Ms. Kloss said the Committee should think about either supporting the recommendations emerging from ONC’s FACAs or say something else. She added that there would be no commitment on the HIPAA state of play until the interoperability roadmap has been addressed. Finally, she pointed to the need for new Subcommittee members and for a co-chair, and Mr. Scanlon asked NCVHS members to send him suggestions for new members.
―Day Two―
Subcommittee on Population Health―Drs. Cohen and Stead (slides)
Dr. Cohen enlisted members in identifying Roundtable-generated ideas that are ready for development into recommendations to the Secretary and those that might become recommendations after further work and/or that lend themselves to an NCVHS convening activity. This exercise is a step toward development of a letter to the Secretary, which the Subcommittee hopes to present for approval at the May NCVHS meeting. The discussion covered both the process for conducting this exercise and the content of the possible strategies. The group welcomed Dr. Tang’s offer to suggest a framework for organizing the recommendations. A federal “hub” for community health data, technical assistance, and education on stewardship were the topics selected for development of recommendations. Because of time constraints, members were asked to send the co-chairs their suggestions for possible future recommendations and/or NCVHS convening. In that category, members expressed particular interest in small area estimation.
The group then moved on to a discussion of the evolving NCVHS Framework. After describing the project for new members, Dr. Stead invited comments on several questions raised in the latest version of the white paper on the Framework. Besides addressing some of these questions, the Committee delved into larger questions about the audience, purpose, scope, and potential applications of this project. Dr. Stead explained that the Framework is intended to provide a taxonomy that makes explicit the assumptions about datasets that are now unstated, to make it possible to use and reuse the datasets in systematic, precise, and standardized ways. The target audience is people with technical expertise in data and information. Members agreed that use cases (AKA vignettes or scenarios) would be helpful. Another suggestion was to show how the taxonomy works using two common datasets.
Members stressed the potential usefulness and value of the Framework, for example by providing language and framing for dealing with big data. At the urging of several members, the Committee agreed to allocate plenary time in the May meeting to comprehensively discuss this work and its potential applications.
NCHS Update―Charlie Rothwell, Director
Mr. Rothwell set the tone by saying, “This is a pretty good year,” and “the future looks good.” He praised the work of the NCHS staff members who volunteered to go to West Africa to work on Ebola, and announced that Nat Schenker is the new Deputy Director and Susan Queen will head an NCHS office on Congressional relations. The current FY budget has been flatlined; and NCHS is now in the HHS budget, which gives it more stability. The President’s budget for the next FY also looks good. NCHS is now able to give health estimates for states, and the expanded sample size and new questions on the HIS also make it possible to monitor coverage and health insurance, and ultimately health status. About 40 percent of all vital statistics records now come to NCHS within 10 days of the event, and in general timeliness is getting much better. Vitals are going to start putting out quarterly reports this year, which Mr. Rothwell said he was “tickled pink about.” He added that the fact that 30 states now provide 80 percent of their data within 10 days of the event is “one of the greatest success stories in my time in public health.” NCHS is exploring how to deal with electronic health records, including the need for standards, the potential of big data, what intermediary software is needed, and so on.
In conclusion, he expressed dismay at the measles epidemic and stressed the need for a public conversation about immunizations and the public health risks of avoiding them. NCHS has the data to tell the factual story of what was conquered and what could happen if Americans are not immunized, he said; and NCHS “needs to be showing our data better.”
Discussion
Dr. Cohen was the first of many members to applaud and thank Mr. Rothwell for his leadership and to praise developments at NCHS such as “the revolution in e-vitals” and dramatic improvements in timeliness. Members expressed interest in having Ms. Williams demo the e-vitals reporting for NCVHS. Dr. Mays urged attention to improving the data on violent deaths by getting more states to participate. Dr. Suarez called attention to the June 2014 NCVHS recommendations to the Secretary on improving the public health infrastructure. Several members endorsed Mr. Rothwell’s emphasis on getting the story out about public health issues and actions. Dr. Ross pointed out that this must go beyond data visualization and link to people and stories; he then asked what NCHS is doing to help communities with methodologies such as small area estimation to answer community questions. Mr. Rothwell replied that having “very little to say about communities…has been one of our greatest weaknesses.” Regarding small area estimation and other community-level challenges, Dr. B. Cohen urged that NCHS and other federal agencies “use their technical resources to help teach people how to fish” by supporting communities in ways that enable them to do their work better. He stressed that NCHS has an opportunity to assert its leadership in this area. Ms. Love added that states and communities need methods for forecasting, too, and states also need guidance on managing the transition to ICD-10.
Health Insurance Coverage: Early Release Program Update―Robin Cohen, PhD, NCHS (slides)
The 100 new questions and larger sample size that enhanced the Health Interview Survey in 2011 now enable quarterly health insurance estimates with a six-month lag. Dr. R. Cohen presented highlights from the data for the first 6 months of 2014, including breakdowns for age group, race/ethnicity, sex, poverty, and exchange plan enrollment. She and Mr. Scanlon said the data to be released in March will be significant.
In the discussion period, Dr. Bruce Cohen pointed out that some confusion could be caused for states by the fact that the NHIS state estimates are likely to be different from BRFSS data and other sources because of different data collection methods and sampling. He urged NCHS be prepared to work with the states and CDC to explain any differences that occur and answer questions from governors, health commissioners, and others.
Briefing on the Working Group on Data Access and Use―Dr. Mays (slides)
Dr. Mays briefly described the charge and activities of the Working Group for the benefit of new members, noting that its role is to assist and advise HHS. The Working Group makes recommendations (through NCVHS) to various HHS agencies and serves as a reactor panel in face-to-face dialog with agency presenters. Dr. Frances, a new member, provides expertise on privacy.
The Working Group is now working on developing guiding principles on data access and use, which it will suggest that HHS agencies think about as they develop their datasets. (See slides.) It is doing so with attention to guides that HHS already has in place. Three user groups (“use cases”) are envisioned: data warehouse, developers, and designers; data users (researchers); and consumers. It is assumed that HHS datasets will not be equally usable across all three groups. Dr. Mays briefly reviewed the principles as currently drafted. The Working Group is interested in the potential of bottom-up approaches such as “social tagging,” and in the development of learning communities among data users. At present, it is challenged by being between staff members; and the terms and participation of Working Group consultants need attention.
In a brief discussion period, Mr. Soonthornsima suggested identifying a few priorities, and Dr. Cohen commented on the convergence between the Framework project and the Working Group’s evolving principles, each of which is a response to the need for consistent ways to describe the datasets being provided for diverse data users. Ms. Goss noted that this discussion reinforces the need for an overarching roadmap to coordinate all the Committee’s work. She reported that she and Ms. Deutsch would build a baseline document to elicit feedback, as part of a planning process aimed at driving convergence across workgroups and committees and helping the Committee manage its workload.
After a brief review of agenda items for the May meeting, Mr. Scanlon adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
| /s/ | February 25, 2015 |
| Chair | Date |