NCI Workshop on Broadening Epidemiologic Data Sharing


Overview

The NCI Workshop on Broadening Epidemiologic Data Sharing, sponsored by the Epidemiology and Genomics Research Program (EGRP), was held on October 8, 2014, at the NCI Shady Grove Campus in Rockville, Maryland.

Broad accessibility to peer-reviewed scientific publications has ushered in an era of open access in the 21st century. A 2013 memorandumExternal Web Site Policy from the Office of Science and Technology Policy directing Federal agencies to "support increased public access to results of research... funded by the Federal Government" suggests that broader access to scientific data will exist in the near future. There have been major advances in genomic data sharingExternal Web Site Policy with the establishment of new infrastructure, resources, and policies. However, additional approaches are needed for sharing individual-level epidemiologic data to enhance the pace of scientific progress in cancer epidemiology.

The purpose of this workshop was to identify opportunities and resolve barriers to facilitate controlled access by the scientific community to epidemiologic data from observational studies. The meeting brought together key stakeholders from EGRP, the Division of Cancer Control and Population Sciences (DCCPS), the Division of Cancer Epidemiology and GeneticsExternal Web Site Policy (DCEG), the NCI Cohort Consortium, and the extramural scientific community. Attendees engaged in thoughtful and candid discussion about how to facilitate and support increased sharing of epidemiologic data.

The workshop provided a forum to further the discussion on data sharing and corresponding challenges. The goals of the workshop were to:

  1. Identify challenges and possible solutions to sharing epidemiologic data;
  2. Identify key elements and potential epidemiologic data sharing model(s); and
  3. Identify resources needed to facilitate increased epidemiologic data sharing.

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Agenda

Time Topic
8:00 a.m. - 8:30 a.m. Registration
8:30 a.m. - 8:45 a.m.

Welcome and Opening Remarks
Tram Kim Lam, Ph.D., M.P.H.
Epidemiology and Genomics Research Program (EGRP), DCCPS, NCI

Robert Croyle, Ph.D.
Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI)

Online attendees, please join the webcast: http://chimeracast.com/nci_102014/live/External Web Site Policy

8:45 a.m. - 12:15 p.m. Morning Session
8:45 a.m. - 9:45 a.m.

Today's Scope and Definitions
James Lacey, Jr., Ph.D.
City of Hope Cancer Center

Facilitated Discussion
Moderator: Shannon K. Bell, M.S.W.
Office of Workforce Planning and Development (OWPD), NCI

  • Panel Discussion: James Lacey, Elizabeth Gillanders, Ph.D., NCI, DCCPS, EGRP
9:45 a.m. - 10:30 a.m.

Insights From the Current Data Sharing Landscape and Lessons Learned

  • Benefits of Data Sharing to Scientific Discoveries
    Ulrike Peters, Ph.D.
    Fred Hutchinson Cancer Research Center
  • Logistical Considerations and Practical Solutions
    Meir Stampfer, M.D., Dr.Ph.
    Harvard School of Public Health
  • Panel Discussion, Moderated by Julie Buring, Harvard School of Public Health
    Julie Palmer, James Lacey, Sara Lindstrom, Meir Stampfer, Ulrike Peters

Online attendees may email questions/comments to EpiDataSharing@icfi.com.

10:30 a.m. - 10:45 a.m.

Break
Attendees will be responsible for meals and/or light refreshments on their own and at their own cost.

10:45 a.m. - 12:15 p.m.

Challenges to Data Sharing in Cancer Epidemiology
Shannon K. Bell, M.S.W.
OWPD, NCI

  • Small-group brainstorming session on challenges to epidemiologic data sharing
    In-person attendees, please remain in TE406 for the brainstorming session.
    Online participants, please report to your assigned online discussion group.
  • Report-out on identified challenges to epidemiologic data sharing
  • Prioritize identified challenges to epidemiologic data sharing
    In-person and on-line prioritization of challenges to be resolved.
    Online participations will receive detailed instructions on how to vote for priority challenges.
12:15 p.m. - 1:00 p.m.

Lunch
Attendees are responsible for snacks/meals on their own/at their own cost. Attendees should report to their assigned breakout session as indicated in the registration packet by 1:00 p.m.

1:00 p.m. - 5:00 p.m. Afternoon Session
1:00 p.m. - 2:30 p.m. Breakout Sessions: Approaches to Surmount Identified Challenges
In-person attendees, please refer to the participation list for your breakout room assignment.
Online attendees, please return to your assigned online discussion group.
2:30 p.m. - 2:45 p.m.

Break
Attendees will be responsible for meals and/or light refreshments on their own and at their own cost.

2:45 p.m. - 4:30 p.m.

Report Back to Group and Discussion
Shannon K. Bell, M.S.W.
OWPD, NCI

In-person attendees, please return to the main conference room, TE406.
Online attendees, please join the webcast: http://chimeracast.com/nci_102014/live/External Web Site Policy

4:30 p.m. - 5:00 p.m. Wrap-Up and Charge to Group
Muin Khoury, M.D., Ph.D.
Joanne Elena, Ph.D., M.P.H.
EGRP, DCCPS, NCI
5:00 p.m. Adjourn

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Planning Committee

  • Julie Buring, Sc.D., Harvard School of Public Health
  • Joanne Elena, Ph.D., NCI, DCCPS, EGRP
  • Elizabeth Gillanders, Ph.D., NCI, DCCPS, EGRP
  • James Lacey, Jr., Ph.D., City of Hope Cancer Center
  • Tram Kim Lam, Ph.D., NCI, DCCPS, EGRP
  • Sara Lindstrom, Ph.D., Harvard School of Public Health
  • Somdat Mahabir, Ph.D., NCI, DCCPS, EGRP
  • Julie Palmer, Sc.D., Boston University, Slone Epidemiology Center
  • Ulrike (Riki) Peters, Ph.D., Fred Hutchinson Cancer Research Center
  • Nicolas Wentzensen, M.D., Ph.D., NCI, DCEG
  • Deborah Winn, Ph.D., NCI, DCCPS, Office of the Director

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Contacts

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