Department of Health and Human Services

National Committee on Vital and Health Statistics

Working Group on HHS Data Access and Use

December 3, 2014

Hubert H. Humphrey Building, Washington, DC

―Meeting Minutes―

The Working Group on HHS Data Access and Use was convened on the afternoon of December 3, 2014, in Washington, DC. The meeting was open to the public. Present:

Working Group members

  • Bruce Cohen, Ph.D.
  • Vickie Mays, Ph.D., Chair
  • Kenyon Crowley, MBA, MS
  • Leslie Pickering Francis, J.D., Ph.D.
  • Mohit Kaushal, MD
  • Joshua Rosenthal, Ph.D.
  • Walter Suarez, MD
  • Paul Tang, MD (by phone)
  • Leah Vaughan, MD

Absent:

  • Christopher Fulcher, Ph.D.
  • Bill Davenhall
  • Chris Gibbons, MD
  • Pete Hudson, MD
  • Patrick Remington, MD
  • Mark Savage

Lead Staff and Liaisons

  • Debbie Jackson, NCHS, Acting Exec. Secretary
  • Jim Scanlon, ASPE
  • Damon Davis, HHS IDEA Lab
  • Lily Bradley, ASPE

Others

  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Susan Queen, ASPE
  • Maya Bernstein, ASPE
  • Jacqueline Lucas, NCHS
  • Linda Kloss, NCVHS member
  • Susan Kanaan, NCVHS writer

Note: The transcript of this meeting and presenters’ slides are linked to the meeting agenda on http://ncvhs.roseliassociates.com. Use the meeting date to access the agenda.


EXECUTIVE SUMMARY

Updates and Follow-up from the HHS Idea Lab―Damon Davis

Under the HHS Entrepreneurship Program, the Department has brought in David Portnoy for 12-18 months to look at database linkages across the Department and recommend high-impact solutions. The group agreed to invite him to the next Working Group meeting, and to notify the full Committee of this opportunity to provide input. Mr. Davis asked members to send him information on “human stories about how HHS data are used” that can be featured on the healthdata.gov blog.

Mr. Davis, Dr. Rosenthal, and others encouraged members to submit abstract proposals for Datapalooza sessions and to pass this message on to others.

The group agreed to invite Niall Brennan to come talk to the Working Group about his new CMS center and how it and the IDEA Lab will coordinate their efforts.

2015 Strategic Work Plan and Work Stream Development

The Working Group has two work streams designed to enhance access and use: development of a data owner dissemination assessment tool, and development of data dissemination guiding principles. This work is in addition to its ongoing agency consultations and providing assistance on NCVHS projects, on request. They discussed these projects and their timelines. Dr. Mays asked members before the next meeting to look at existing sets of principles. After their discussion with Dr. Boone, the Working Group returned to this topic, reviewing the status of both of its evolving products. (See detailed summary below for details.)

Discussion with Chris Boone, Ph.D., CEO, Health Data Consortium (HDC)

Dr. Mays described NCVHS for Dr. Boone and said the purpose of this session is for him and the Working Group to get acquainted and begin a conversation. Working Group members introduced themselves and described their professional work. Dr. Boone, who has been CEO for just five weeks, shared his vision for HDC and described a few projects, and then talked with members about “the natural synergies” between HDC and the Working Group.

HDC is primarily focused on government data sets and realizing the opportunities they represent. A major goal is to foster a community on both a local and global scale. At the local community level, it focuses on the use of open government data and its impact on targeted populations. Other focuses include fostering innovation, expanding its affiliate relationships (there are 11 regional affiliates), and providing learning opportunities for young data scientists through internships and fellowships. HDC’s affiliates are HDC’s medium for working with communities. HDC is focusing on thought leadership, such as documenting and disseminating best practices and providing guidance documents and frameworks. Some affiliates are interested in conducting regional Datapaloozas.

There was considerable discussion of the potential synergies between the two groups. Dr. Mays asked if NCVHS and the Working Group could do outreach through the HDC affiliate network. Dr. Boone said HDC could convey messages and questions from NCVHS through its periodic summits and then report back. HDC is planning a summit on data governance. In response to a question from Ms. Kloss, Dr. Boone said HDC could provide a link to the NCVHS community data stewardship toolkit and other products on its website. Noting that he had just become aware of the Committee’s existence, he acknowledged the valuable opportunity to push issues and get direct feedback through the Working Group, both for HDC and its members and stakeholders. He asked to be sent meeting agendas.

Convergence with NCVHS Activities

Ms. Kloss described the NCVHS toolkit on community data stewardship and said the Committee wants to disseminate it broadly. She asked the Working Group to brainstorm on how to do this. Members offered a number of suggestions and ideas. (See detailed summary.)

Dr. Mays noted that this is a good experiment from which NCVHS can learn a lot that could be applicable with others of its products. Ms. Jackson affirmed that the Committee is looking for new mechanisms to make more people aware of its work and products.

Dr. Suarez and Dr. Cohen then described the activities of the Standards and Population Health subcommittees (respectively) and noted potential areas of cooperation with the Working Group.


DETAILED SUMMARY

Opening Remarks and Introductions

Dr. Mays called the meeting to order. After introductions, she said the updates from the IDEA Lab would generally include both new items and follow-up on anything discussed at the last meeting.

Updates and Follow-up from the HHS IDEA Lab―Damon Davis

Under the HHS Entrepreneurship Program, the Department has brought in David Portnoy for 12 to 18 months to look at database linkages across the Department and recommend high-impact solutions. Mr. Portnoy has extensive experience with enterprise-level database architecture. Once he is familiar with HHS and its data assets, he will determine the nature of the linkages. Mr. Davis invited Working Group members to send suggestions to him and/or directly to Mr. Portnoy. The group agreed to invite him to the next Working Group meeting, and to notify the full Committee of this opportunity to provide input.

The IDEA Lab continues to work on identifying strategically relevant data assets, and Mr. Davis promised an update on that when the project is further along. He described some of the Lab’s activities to increase coordination across the healthdata.gov platform and to set up an infrastructure for inputs, updates, metadata tagging, and other actions. The updated metadata schema is on GitHub. He continues to “evangelize for the data story,” in search of “human stories about how HHS data are used” that can be featured on the healthdata.gov blog. He urged members to send him stories and contact information for this purpose.

Dr. Rosenthal asked about the plans on “refresh,” calling this issue “one of the hugest roadblocks to adoption.” He also noted that a key question with storytelling about data is, “What question does this data answer?” But regardless of the question, people will be leery about using a given data set if they are not sure when it will be refreshed. He and Mr. Davis discussed making refresh plans one of the Working Group’s general principles, and possibly making it a required field in the catalog.

Mr. Davis, Dr. Rosenthal, and others (including Dr. Boone, later in the meeting) encouraged members to submit abstract proposals for Datapalooza sessions and to pass this message on to others. Ideas for sessions surfaced periodically during the meeting, including one to introduce NCVHS’s new community data stewardship toolkit.

The group agreed to invite Niall Brennan to come talk to the Working Group about his new CMS center and how it and the IDEA Lab will coordinate their efforts.

2015 Strategic Work Plan and Work Stream Development

The Working Group has two work streams designed to enhance access and use: development of a data owner dissemination assessment tool, and development of data dissemination guiding principles. The group reviewed a work plan with quarterly milestones for each stream throughout 2015. This work is in addition to its ongoing agency consultations and providing assistance on NCVHS projects, on request. The group discussed these projects and the timelines for them.

The idea emerged to create an online HHS repository of existing data dissemination guidances of various agencies, for easy access and reference. However, given the wide variety among the content, purpose, and audience for the various data collection systems, perhaps what is needed is a higher-level conceptual framework of principles that would apply to all of them and help serve HHS data users with different levels of skill and resources (e.g., entrepreneurs, researchers, consumers, and communities). Dr. Mays noted that the questions to be developed for the Working Group’s consultations with agency representatives would reflect the same principles, all in the service of making HHS data accessible and useful. Mr. Davis suggested that the principles “tie back” to an assessment or self-assessment tool that shows whether agency practices are consistent with the principles. Dr. Queen added, though, that to be useful, such a tool should have a low burden. Dr. Suarez urged that usefulness be considered along with usability, with criteria for evaluating it as well as metrics for the principles.

Mr. Crowley noted the merits of democratizing the data and learning to achieve what the Working Group envisions, rather than just relying on government. He suggested looking at the guiding principles for the open data movement <project-open-data.cio.gov/principles>. Dr. Mays asked members before the next meeting to look at existing sets of principles.

In a series of questions, Dr. Tang asked how the needs of potential data users such as communities will be assessed to inform the Working Group’s development of tools. Dr. Mays explained that the Working Group’s client is HHS, and its needs will be assessed and conveyed by Mr. Davis after talking with others in the Department to determine who can take advantage of the Working Group’s consultative services.

Discussion with Chris Boone, Ph.D., CEO, Health Data Consortium (HDC)

Dr. Mays described the National Committee on Vital and Health Statistics for Dr. Boone, and said the purpose of this session is for him and the Working Group to get acquainted and begin a conversation. Working Group members introduced themselves and described their professional work.

Dr. Boone, who has been CEO for just five weeks, said he would share his vision for HDC and then welcome dialog about “the natural synergies” between HDC and the Working Group. HDC is primarily focused on government data sets and realizing the opportunities they represent. He and Mr. Davis work together closely. A major goal of the Consortium is to foster a community on both a local and global scale. At the community level, it focuses on the use of open government data and its impact on targeted populations. Other focuses include fostering innovation, expanding its affiliate relationships (there are 11 regional affiliates), and providing learning opportunities for young data scientists through internships and fellowships.

Dr. Cohen described the goals and recent work of the Subcommittee on Population Health, and asked Dr. Boone how the HDC could provide value for community coalitions to make their work easier―e.g., doing better community health needs assessments and improvement projects. Dr. Boone said this question is common in its affiliate town halls. He described the growing relationships with the affiliates, which are HDC’s medium for working with communities. HDC is focusing on thought leadership, such as documenting and disseminating best practices and providing guidance documents and frameworks. Some affiliates are interested in conducting regional Datapaloozas.

On the Datapalooza, Dr. Boone said the vision for the event, which is now “almost at adolescence,” is to evolve into a more knowledge-generating meeting that “pushes the envelope when it comes to the uses of data.” It will engage thought leaders and practitioners to consider how to move forward. One emerging focus is the uses of data to improve care and reduce cost for targeted populations, and this would involve looking more closely at communities. He reiterated that there is a call for abstracts and encouraged people to submit proposals.

Dr. Mays asked if NCVHS and the Working Group could do outreach through the HDC affiliate network. Dr. Boone said HDC could convey messages and questions from NCVHS through its periodic summits and then report back.

In response to a question about the HDC business model and how to make things easier for start-ups, Dr. Boone said HDC wants to use its convening power to build more of a platform or infrastructure to enable data users to share key lessons learned. One goal is to “get into some real needle-movers.” He welcomed Mr. Crowley’s offer of assistance to pursue student engagement. Regarding metrics on the availability of data, HDC has not developed any but he thinks that is a “wonderful area to explore.” HDC is planning a summit on data governance. In response to a question from Ms. Kloss, Dr. Boone said HDC could provide a link to the NCVHS toolkit and other products on its website.

Noting the potential synergies between the two groups and the fact that NCVHS is a FACA, Dr. Mays asked what would be useful to HDC. Dr. Boone said he had just become aware of the Committee’s existence, and he acknowledged the valuable opportunity to push issues and get direct feedback through the Working Group, both for HDC and its members and stakeholders. He asked to be sent meeting agendas. Asked about his priorities, he said a major one is to build a sustainable business model, and others will be identified after he has been on the job longer. Dr. Mays thanked him and encouraged him to stay in touch with the Working Group.

2015 Work Plan

Returning to the work plan, the group focused on the assessment tool, which is aimed at giving feedback to HHS groups on improving data access and usability, including using new mechanisms, after finding out what they are already doing. Dr. Cohen, who has started drafting an assessment tool, described his thinking thus far. Dr. Suarez and Mr. Crowley offered to serve on this team. The group discussed some ideas for tools. A shareable document will be posted on the Google doc site.

They then reviewed the current contents of the guiding principles. Ms. Bradley noted the varied content and levels of abstraction in the current draft and urged the group to make sure that the document conveys a coherent and well-thought-out message. Dr. Rosenthal outlined these components as a possible structure: axiom (guiding principle statement), illustrative example, analogy, and use case(s). He proposed using a Mad Lib game format for applications.

Convergence with NCVHS Activities

Noting that one potential function of the Working Group is to help NCVHS subcommittees, Dr. Mays invited Ms. Kloss to talk about the toolkit on community data stewardship that has been developed by the Privacy Subcommittee. It wants to disseminate this resource broadly, and is asking the Working Group to brainstorm how to do this. Dr. Mays noted that NCVHS has a beautiful new website that can be used. Dissemination will start with the NCVHS email list. She added that the ideal is to enable users to click to sections of interest and also to make it a “live resource” with interactivity to garner information on usage, questions, suggestions for revisions, and so on.

Working Group members offered a number of suggestions and ideas, including these:

  • Turn it into a Kindle book.
  • Break it into web pages and hyperlink.
  • Ask for feedback using something like Slide Chair (?).
  • Put a gate on it and build a list, with an opt-in feature giving permission for contact.
  • Create a one-page summary that distills the contents and key messages.
  • Do an executive summary and a narration by a creator saying why it was produced, why it is meaningful, and the thesis.
  • Create an infographic.
  • Do a blog post by someone with credibility and gravitas. The Secretary?
  • Health IT buzz blog and other HHS blogs, with a link to the toolkit
  • Have Working Group members and others share it on their linked pages
  • Have everyone tweet it; have a Twitter campaign; maybe a promoted tweet.
  • Put it in conference packs, e.g., Datapalooza, APHA, NCHS.
  • Use conference hashtags during conferences.
  • Google the basic checklist for social media campaigns.
  • LinkedIn
  • AB-test several options
  • Pay attention to the metrics.
  • Be provocative in the marketing. (“Don’t be a data dummy.”) Get a hashtag with a good slogan.

Dr. Mays noted that this is a good experiment from which NCVHS can learn a lot that could be applicable with others of its products. Ms. Jackson affirmed that the Committee is looking for new mechanisms to make more people aware of its work and products.

Dr. Suarez briefly described the work of the Subcommittee on Standards and offered its assistance to the Working Group around standardization issues. He also described the new ACA Review Committee. He and Dr. Mays agreed that health care transparency, which is on the Subcommittee’s 2015 work plan, is an area of common interest with the Working Group. Dr. Mays suggested that members might want to attend the NCVHS meeting in February to hear an HHS briefing on its plans for evaluating the ACA.

Dr. Cohen described the Population Health Subcommittee’s work on community data engagement and noted the overlap with the Working Group in relation to the dissemination assessment tool. He invited the participation of members with an interest in community-level data use.

After a few final comments, Dr. Mays adjourned the meeting.