Department of Health and Human Services

National Committee on Vital and Health Statistics

Working Group on HHS Data Access and Use

November 14, 2013

National Center for Health Statistics, Hyattsville, MD

Meeting Minutes


The Working Group on HHS Data Access and Use was convened on the afternoon of November 14, 2013, at the National Center for Health Statistics in Hyattsville, MD. The meeting was open to the public. Present:

Working Group members

  • Justine M. Carr, M.D., Chair
  • Bill Davenhall
  • P. Kenyon Crowley, MBA, MS
  • Bruce Cohen, Ph.D.
  • Leslie Pickering Francis, J.D., Ph.D.
  • Joshua Rosenthal, Ph.D.
  • Paul Tang, MD
  • Leah Vaughan, MD

Absent:

  • M. Chris Gibbons, MD
  • Pete Hudson, MD
  • Mohit Kaushal, MD
  • Patrick Remington, MD
  • Walter Suarez, MD
  • Kalahn Taylor-Clark, Ph.D.

Lead Staff and Liaisons

  • Marjorie Greenberg, NCHS, Exec. Secretary
  • Jim Scanlon, ASPE
  • Lily Bradley, ASPE

Others  

  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Larry Green, NCVHS chair
  • Vicky Mays, NCVHS member
  • Susan Kanaan, NCVHS writer

Note:  The transcript of this meeting is linked to the meeting agenda on http://ncvhs.roseliassociates.com. Use the meeting date to access the agenda.  


EXECUTIVE SUMMARY

In this half-day meeting, Working Group members and other participants agreed to develop a letter to the Secretary summarizing the Working Group’s work and learning to date. Three members presented reports and/or discussion documents/slides that covered 1) HHS data availability and usability; 2) the privacy policies of social media sites; and 3) an approach to understanding social media in conjunction with HHS and other data.

Ultimately, members agreed on these next steps:

  1. Drafting a letter to the Secretary summarizing observations and findings to date;
  2. Holding conference calls in December and January to refine the draft letter and plan the February meeting; and
  3. Planning a “deeper dive” discussion with people with relevant experience at the February meeting, to focus on what they did and how, their successes, and the challenges they encountered. Dr. Carr asked members to send suggestions.

DETAILED SUMMARY

This meeting marked a transition as the Working Group began to focus on developing a letter to the Secretary summarizing its work and learning to date. They determined that according to the Charter, this will be presented to the full National Committee and, after approval, transmitted to the Secretary. (The group returned again and again to the Working Group’s charge to hone its understanding of its assignment and goals.)

Three members presented reports and/or discussion documents/slides that covered 1) HHS data availability and usability; 2) the privacy policies of social media sites; and 3) an approach to understanding social media in conjunction with HHS and other data.

1) HHS Data Availability and Usability

Mr. Davenhall shared a commentary on carrying out the Working Group’s charge, with suggestions for work products, as well as the results of an informal analysis of national health data access in terms of geographic granularity. He asserted that the focus should be on providing better and more user-friendly access to existing HHS data rather than on filling perceived data gaps. The group discussed the obstacles to data access and the limits of existing data, focusing in particular on the obstacles imposed by state/territory data ownership and conflicting state laws and policies.

A key point that emerged is that currently, it is no one’s job to make data available and usable for communities. Participants considered how the federal government could provide leadership in overcoming these obstacles, to facilitate community-level uses of data. (One idea: templates into which state health departments could drop their data, with associated query systems.) The group also talked about usability issues, the need for metadata in conjunction with federal data, and possibilities for creating a learning center for sharing learning and highlighting what is working. Dr. Rosenthal reviewed the recommendations he proposed at an early Working Group meeting, which cover several of the above areas. The question arose of who within federal government is (or should be) responsible for making such changes.

2) Privacy Policies of Social Media Sites

Dr. Frances briefly reviewed the highlights of an analysis she helped to conduct of the privacy policies in place for social media sites. The overall finding is that the policies vary considerably.

3) “Navigating Change: A Framework for Traditional HHS, Intervention, and ‘New’ Data

Dr. Rosenthal presented a document/slides. After reviewing the Working Group’s findings to date and noting the need for a common vocabulary and frame of reference for this inquiry, he proposed a mental map/model (“framework”) that could be used to compile examples and talk about social media data and ways to combine them with HHS data. The framework is a table with three functions (profiling, intervention, and outcomes) on one axis and three data sources (HHS, intervention, and social media) on the other. Case examples would be entered in the cells of the matrix. This led to a discussion among participants about definitions (e.g., the assertion that social networks are a defining characteristic of social media) and possible applications or refinements of the framework.

One upshot of the discussion was agreement that it would be useful to talk with leading-edge practitioners about their health-related uses of social media. The group agreed to plan this for the February meeting.

Discussion Themes

Several themes threaded through the discussions:

  • Audience for the Working Group’s products: Members identified the Working Group itself, the Secretary, and communities as potential audiences.
  • Scope, and the focus on social media: The social media arena has been of particular interest to the Working Group. One question about this focus was framed in terms of a broader question about the scope of the Working Group’s activities. Rather than figuring out how to use existing data sets, another line of inquiry was proposed, starting with thinking about what we would like to know about communities, to enable guidance on how to collect the array of needed data. Members agreed that the Working Group’s explorations to date have shown that the social media arena is still uncharted territory, and its usefulness for enhancing population/community health (beyond communication and information transmission) remains embryonic. Given its fluidity, some questioned the appropriateness of focusing on this arena to such an extent; others, however, pointed out that this task is named explicitly in the Working Group’s charter. Members also cited the untapped potential to use social media data to assess engagement, identify trends in content, and do other types of analysis.
  • Examples: The discussion generated a multitude of examples of relevant social media and mobile health (mHealth) tools, activities, and practitioners and of germane HHS and academic research in this area. (See transcript for details.)
  • Distinguishing personal health and community health uses of data and technology: Because the discussion ranged across personal as well as community-oriented uses of social media and mobile health tools, members stressed that the Working Group and NCVHS as a whole are most interested in uses for and by communities.

Next Steps

The Working Group agreed on the following next steps:

  1. Drafting a letter to the Secretary summarizing observations and findings to date;
  2. Holding conference calls in December and January to refine the draft letter and plan the February meeting; and
  3. Planning a “deeper dive” discussion with people with relevant experience at the February meeting, to focus on what they did and how, their successes, and the challenges they encountered. Dr. Carr asked members to send suggestions.

She then adjourned the meeting.


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

/s/

Chair Date