Department of Health and Human Services

National Committee on Vital and Health Statistics

Working Group on HHS Data Access and Use

June 22, 2012

Doubletree Hilton Hotel, Silver Spring MD

Meeting Minutes

The Working Group on HHS Data Access and Use held its first meeting on June 22, 2012, at the Doubletree Hilton Hotel in Silver Spring, MD. The meeting was open to the public. Present:

Working Group members

  • Justine M. Carr, M.D., Chair
  • Bruce Cohen, Ph.D.
  • P. Kenyon Crowley, MBA, MS
  • Bill Davenhall
  • Mohit Kaushal, MD
  • Patrick Remington, MD (phone)
  • Joshua Rosenthal, PhD
  • Walter Suarez, M.D.
  • Paul Tang, MD
  • Kalahn Taylor-Clark, Ph.D
  • Leah Vaughan, MD

Absent:

  • Leslie Pickering Francis, J.D., Ph.D.
  • M. Chris Gibbons, MD

Staff and Liaisons

  • Marjorie Greenberg, NCHS
  • James Scanlon, ASPE
  • Susan Queen, ASPE, lead staff
  • Greg Downing, OS
  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Jim Craver, NCHS

Others

  • Marietta Squire, NCHS
  • Susan Baird Kanaan, NCVHS writer
  • Vickie Mays, Ph.D., NCVHS member
  • Linda Kloss, NCVHS member

Note: The transcript of this meeting and list of Working Group members is posted on the NCVHS Web site, http://ncvhs.hhs.gov.

Summary

The new Working Group on HHS Data Access and Use was convened by HHS to bring the developer community for apps and technology together with HHS data experts and data users to generate advice on promoting and expanding access to and innovative uses and applications of HHS data to improve health and health care. The Working Group will operate through the National Committee on Vital and Health Statistics (NCVHS).

At its first meeting, on June 22, 2012, Dr. Carr welcomed the members and asked them to introduce themselves. On behalf of the Department, she, Mr. Scanlon and Ms. Greenberg thanked the members for their willingness to serve on the Working Group. Ms. Greenberg introduced the NCHS staff, who will provide staff support for the Working Group along with Susan Queen, the lead staff.

Discussion: Work Expectations

Dr. Carr reported that Mr. Park had talked with NCVHS at its earlier meeting about his excitement and hopes for the Working Group. She noted that the U.S. is at a crossroads between managing old systems and transitioning to new systems.

After explaining the thinking behind the creation, structure, and charge of the Working Group, Mr. Scanlon gave a brief overview of the extensive HHS data holdings and their different content, purposes and uses. He promised more extensive orientation on these topics in the future as background for the Working Group’s work. There is increasing demand for HHS data, and new forms of data release and access are under development, notably through healthdata.gov. However, “everyone believes we could do much better” at publicizing, disseminating, and encouraging the use of HHS data while always protecting privacy and confidentiality. A general issue for the Department is that the data are “all over the place,” and “you would have to be an aficionado to know where to get it.” He explained the types and levels of access to HHS data, which impose necessary constraints for example, through the use of research data centers. HHS will be asking the Working Group to look at its data assets in terms of the potential uses by the communities they represent and what applications might make the data more usable. Some meetings will be held by teleconference or webinars, and some will be in-person.

Dr. Carr outlined the questions Mr. Park had articulated for the Working Group. They concerned improving the health data supply, bridging the gap from ideation to testing to use in a live environment, and addressing the shortage of data analytic expertise. The Working Group will function as both a reactor panel and a source of innovative new ideas.

Dr. Greg Downing of the Office of the Secretary commented on the “staggering” rate of emergence of data-based applications, services, and technology platforms that already are under way and on the significant degree of collaboration and adoption of common principles across HHS agencies. A major HHS goal is to encourage understanding about data, not just to publish them. The Secretary, Deputy Secretary, and new HHS Chief Technology Officer are all very interested in the ideas they anticipate from the Working Group as “messengers and active participants in the data future.”

Dr. Carr then invited the group to discuss how it might proceed. The discussion generated the following observations, suggestions, and questions:

  • Give the Working Group a portfolio of problems the Department wants help with.
  • What would success look like? What are measures of success? Timeline?
  • Interest in metadata; need to identify potential audiences.
  • Examine the facts behind assumptions about re-identification: interests and market forces, risks, potential for re-identification, actual practices. (There was considerable interest in this idea.)
  • How do we create a learning community around data? structure of the public/private partnership; tools and mechanisms to enable feedback; desired outcomes, metrics.
  • Is there openness to public/private partnerships for turning data into information?
  • The goal is to transform data into decision-making tools for target audiences community, individuals, local government, et al. to enable better decisions.
  • How can human subjects review be innovated to be responsible to communities and individuals entrusting their data to data stewards?
  • Understanding and preventing the mosaic effect as a result of mash-ups a major concern of federal data stewards.
  • Clarifying who owns the data.
  • Promoting and facilitating communication, education, and outreach to the public

Dr. Carr identified these three themes in the foregoing comments:

  • Assessing the nature and magnitude of risk related to re-identification;
  • Respecting regulatory oversight for strictly regulated datasets; and
  • Identifying the learning that data users need, to avoid creating misinformation.

She called attention to the Working Group’s broad charge, which mentions many of these elements. Ms. Greenberg invited anyone with questions or suggestions about the charge to contact her.

Further discussion focused on the need to delineate the various audiences (users) for health data and their respective interests and capacities. The need to define terms, and specifically what is meant and encompassed by “health data,” was also noted.

An environmental scan was suggested as a first step, to illuminate what health data exist, how they are used, and where the obstacles and gaps are. This would also involve understanding the learning community constituents that use the data, or could do so.

Mr. Scanlon said these ideas would provide the frame for orienting the Working Group, primarily regarding the major HHS data holdings. Once it is oriented, the Working Group can move to thinking proactively about how to remove barriers and extend data use, with audience analysis as a major component. He promised to send Working Group members written background materials and to plan an interactive session for the next meeting to continue the orientation. He added that examining the privacy and confidentiality issues that limit data use will be a necessary part of the process.

Regarding background materials, Dr. Downing reported that all the Datapalooza 2012 presentations are now posted on hdiforum.org. These, he said, are the best place to get a sense of current leading-edge data uses. Health U.S. is another useful resource.

The Working Group’s next face-to-face meeting will be in September, prior to the full Committee meeting if possible. (Subsequently, it was determined that the face-to-face meeting would be held on September 21.) In addition, there will be a webinar over the summer.

Dr. Carr then adjourned the meeting.

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

/s/ 09/21/2012

Chair, Date