In 2022, the Advancing Data Sharing for Implementation Science in Cancer Control: A workshop to facilitate collaboration and exchange was held to bring together implementation science investigators and other complementary experts in data science, ethics, data privacy, and security to provide input on a process, scope, and trajectory for data sharing of implementation science data types.
View Session Recordings
Welcome and Overview
David Chambers, DPhil, National Cancer Institute
April Oh, PhD, MPH, National Cancer Institute
Overview of New NIH Policy on Data Management and Sharing
Jaime Guidry Auvil, PhD, National Cancer Institute
Applying Key Points from the New NIH Policy to IS
Rebekka Lee, ScD, Harvard T.H. Chan School of Public Health
Data Sharing in IS and Cancer Prevention and Control - Panel Discussion
Moderator:
Rebekka Lee, ScD, Harvard T.H. Chan School of Public Health
Panelists:
Emily Dressler, PhD, Wake Forest School of Medicine
Melody Goodman, PhD, New York University School of Global Public Health
Borsika Rabin, PhD, MPH, PharmD, University of California San Diego
Wrap Up and Next Steps
Emily Dressler, PhD, Wake Forest School of Medicine
Melody Goodman, PhD, New York University School of Global Public Health
Welcome and Overview
April Oh, PhD, MPH, National Cancer Institute
Katrina Goddard, PhD, National Cancer Institute
Community Voice, Access, and Implications for Data Sharing
Moderators:
Deborah Cohen, PhD, Oregon Health & Science University
Melody Goodman, PhD, New York University School of Global Public Health
Panelists:
James DuBois, DSc, PhD, Washington University School of Medicine in St. Louis
Nina Wallerstein, DrPH, MPH, University of New Mexico
Sarah Kastelic, PhD, National Indian Child Welfare Association
Al Richmond, MSW, Community-Campus Partnerships for Health
Cirila Estela Vasquez Guzman, PhD, Oregon Health & Science University
Danielle Parker MS, Ed, University of Mexico
Dulce A. Medina Bustillow, LMSW, MBA, Centro Sávila
Ethical and Human Subjects Considerations for Data Sharing
Moderators:
Deborah Cohen, PhD, Oregon Health & Science University
Melody Goodman, PhD, New York University School of Global Public Health
Panelists:
Amy Pienta, Inter-university Consortium for Political and Social Research, University of Michigan
Scott Fisher, CIP, New York University
Heather Angier, PhD, MPH, Oregon Health & Science University
Colin Elman, Qualitative Data Repository, Syracuse University
Dessislava Kirilova, Qualitative Data Repository, Syracuse University
Wrap Up and Next Steps
Deborah Cohen, PhD, Oregon Health & Science University
Melody Goodman, PhD, New York University School of Global Public Health
Borsika Rabin, PhD, MPH, PharmD, University of California San Diego
Welcome and Summary from Session One and Two
David Chambers, DPhil, National Cancer Institute
April Oh, PhD, MPH, National Cancer Institute
Lessons Learned and Recommendations for Common Data Elements - Expert Panel Presentations
Moderators:
Borsika Rabin, PhD, MPH, PharmD, University of California San Diego
JD Smith, PhD, Spencer Fox Eccles School of Medicine at the University of Utah
Panelists:
Bryan Weiner, PhD, University of Washington
David Cella, PhD, Northwestern University Feinberg School of Medicine
Brian Mustanski, PhD, Northwestern University
Dennis Li, PhD, MPH, Northwestern University
Richard Moser, PhD, National Cancer Institute
Q&A with Expert Panel
Moderators:
Borsika Rabin, PhD, MPH, PharmD, University of California San Diego
JD Smith, PhD, Spencer Fox Eccles School of Medicine at the University of Utah
Panelists:
Bryan Weiner, PhD, University of Washington
David Cella, PhD, Northwestern University Feinberg School of Medicine
Brian Mustanski, PhD, Northwestern University
Dennis Li, PhD, MPH, Northwestern University
Richard Moser, PhD, National Cancer Institute
Breakout Group Discussions
Breakout Group Reports
Wrap Up and Next Steps
Borsika Rabin, PhD, MPH, PharmD, University of California San Diego
JD Smith, PhD, Spencer Fox Eccles School of Medicine at the University of Utah
Resources
Websites
- NIH Data Management and Sharing Policy
- NCI Cancer Moonshot℠ Public Access and Data Sharing Policy
- National Academies of Medicine: Changing the Culture of Data Management and Sharing: A Workshop
Articles
- Longo DL, Drazen JM. Data sharing. N Engl J Med. 2016;374(3):276-277. doi:10.1056/NEJMe1516564.
- Mello MM, Lieou V, Goodman SN. Clinical trial participants' views of the risks and benefits of data sharing. N Engl J Med. 2018;378(23):2202-2211. doi:10.1056/NEJMsa1713258.
- DuBois JM, Strait M, Walsh H. Is it time to share qualitative research data? Qual Psychol. 2018;5(3):380-393. doi:10.1037/qup0000076.
Speakers and Planning Committee
Planning Committee
- Deborah Cohen, PhD, Oregon Health & Science University
- Emily Dressler, PhD, Wake Forest School of Medicine
- Melody Goodman, PhD, New York University School of Global Public Health
- Rebekka Lee, ScD, Harvard T.H. Chan School of Public Health
- Borsika Rabin, PhD, MPH, PharmD, University of California San Diego
- JD Smith, PhD, Spencer Fox Eccles School of Medicine at the University of Utah
National Cancer Institute Staff
- Amy Caplon, MPH
- David Chambers, DPhil
- Heather D’Angelo, PhD, MHS
- Wynne Norton, PhD
- April Oh, PhD, MPH
- Cynthia Vinson, PhD, MPA
For further information or questions about the workshop, contact ISC3@icf.com.