The Advancing Data Sharing for Implementation Science in Cancer Control: A workshop to facilitate collaboration and exchange was held on May 31, June 7, and June 13, 2022. The three-part virtual workshop featured sessions on:
- Tuesday, May 31: Charting a roadmap for data sharing in implementation science and cancer prevention and control
- Tuesday, June 7: Ethical, social implications, and research considerations for data sharing in implementation science and cancer prevention and control
- Monday, June 13: Common data elements for implementation science and cancer prevention and control
The goal of this workshop was 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.
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.
Agenda
| 11:00 am - 11:15 am |
Welcome and Overview David Chambers, DPhil, National Cancer Institute April Oh, PhD, MPH, National Cancer Institute |
| 11:15 am - 11:45 am |
Overview of New NIH Policy on Data Management and Sharing Jaime Guidry Auvil, PhD, National Cancer Institute |
| 11:45 am - 12:10 pm |
Applying Key Points from the New NIH Policy to IS Rebekka Lee, ScD, Harvard T.H. Chan School of Public Health |
| 12:10 pm - 12:20 pm | Break |
| 12:20 pm - 1:20 pm |
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 |
| 1:20 pm - 1:30 pm |
Wrap Up and Next Steps Emily Dressler, PhD, Wake Forest School of Medicine Melody Goodman, PhD, New York University School of Global Public Health |
| 1:30 pm | Adjourn |
| 11:00 am - 11:25 am |
Welcome and Overview April Oh, PhD, MPH, National Cancer Institute Katrina Goddard, PhD, National Cancer Institute |
| 11:25 am - 12:45 pm |
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 |
| 12:45 pm - 12:55 pm | Break |
| 12:55 pm - 2:15 pm |
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 |
| 2:15 pm - 2:50 pm |
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 |
| 2:50 pm | Adjourn |
| 11:00 am - 11:30 am |
Welcome and Summary from Session One and Two David Chambers, DPhil, National Cancer Institute April Oh, PhD, MPH, National Cancer Institute |
| 11:30 am - 12:35 pm |
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 |
| 12:35 pm - 12:45 pm | Break |
| 12:45 pm - 1:15 pm |
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 |
| 1:15 pm - 1:55 pm |
Breakout Group Discussions |
| 1:55 pm - 2:00 pm | Break |
| 2:00 pm - 2:35 pm |
Breakout Group Reports |
| 2:35 pm - 3:00 pm |
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 |
| 3:00 pm | Adjourn |
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
Selected Data Sharing Articles
- Longo, D. L., & Drazen, J. M. (2016). Data Sharing. The New England journal of medicine, 374(3), 276–277. https://www.nejm.org/doi/full/10.1056/nejme1516564
- Mello, M. M., Lieou, V., & Goodman, S. N. (2018). Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing. The New England journal of medicine, 378(23), 2202–2211. https://www.nejm.org/doi/10.1056/NEJMsa1713258
- DuBois, J. M., Strait, M., & Walsh, H. (2018). Is it time to share qualitative research data? Qualitative Psychology, 5(3), 380-393. http://dx.doi.org/10.1037/qup0000076
Presentations
- Advancing Equity in Data Sharing Through Authentic Partnerships: Al Richmond, MSW, Community-Campus Partnerships for Health
- Role of the Data Archive in Ensuring Ethical Practices in Data Sharing: Amy Pienta, Inter-university Consortium for Political and Social Research, University of Michigan
- Ethical and Human Subjects Considerations for Data Sharing in IS: Scott Fisher, CIP, New York University
- Grid-Enabled Measures (GEM): Overview and Lessons Learned: Richard Moser, PhD, National Cancer Institute
- Supporting Coordinated Implementation Research Data Collection To Help End The HIV Epidemic: Brian Mustanski, PhD & Denise Li, PhD, MPH, Northwestern University