NCI Workshop on Broadening Epidemiologic Data Sharing
October 8, 2014 at NCI Shady Grove, Rockville, MD
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 memorandum 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 sharing 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 Genetics (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:
- Identify challenges and possible solutions to sharing epidemiologic data;
- Identify key elements and potential epidemiologic data sharing model(s); and
- Identify resources needed to facilitate increased epidemiologic data sharing.
|8:00 a.m. - 8:30 a.m.||Registration|
|8:30 a.m. - 8:45 a.m.||
Welcome and Opening Remarks
Robert Croyle, Ph.D.
Online attendees, please join the webcast: http://chimeracast.com/nci_102014/live/
|8:45 a.m. - 12:15 p.m.||Morning Session|
|8:45 a.m. - 9:45 a.m.||
Today's Scope and Definitions
|9:45 a.m. - 10:30 a.m.||
Insights From the Current Data Sharing Landscape and Lessons Learned
Online attendees may email questions/comments to EpiDataSharing@icfi.com.
|10:30 a.m. - 10:45 a.m.||
|10:45 a.m. - 12:15 p.m.||
Challenges to Data Sharing in Cancer Epidemiology
|12:15 p.m. - 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.||
|2:45 p.m. - 4:30 p.m.||
Report Back to Group and Discussion
In-person attendees, please return to the main conference room, TE406.
|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
- 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
- Joanne Elena, Ph.D, M.P.H., Program Director, Clinical Translational Epidemiology Branch, EGRP
- Tram Kim Lam, Ph.D., M.P.H., Program Director, Knowledge Integration Team and Environmental Epidemiology Branch, EGRP