NCI Workshop on Broadening Epidemiologic Data Sharing

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Overview
Agenda
Planning Committee

Overview

The breadth and scope of studies utilizing an epidemiologic framework has grown significantly during the last few decades. This trend is mainly due to the increasing complexity of the research questions being asked and the consequent need to coalesce data across many studies. In fact, the case has been made that "integrative epidemiology"--the integration and analysis of heterogeneous and multi-layered data sets—may be the key to advance the practice of epidemiology in the twenty-first century.

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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.

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, PhD, MPH Epidemiology and Genomics Research Program (EGRP), DCCPS, NCI Robert Croyle, PhD Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI) 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 James Lacey, Jr., PhD City of Hope Cancer Center Facilitated Discussion Moderator: Shannon K. Bell, MSW Office of Workforce Planning and Development (OWPD), NCI Panel Discussion: James Lacey, Elizabeth Gillanders, PhD, 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, PhD Fred Hutchinson Cancer Research Center Logistical Considerations and Practical Solutions Meir Stampfer, MD, DrPh 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, MSW 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, MSW 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/
4:30 p.m. - 5:00 p.m.	Wrap-Up and Charge to Group Muin Khoury, MD, PhD Joanne Elena, PhD, MPH EGRP, DCCPS, NCI
5:00 p.m.	Adjourn

Planning Committee

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

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Last Updated: 19 Aug, 2024