Some Implications of Data Management
Thursday, March 3, 2016
9 PM Eastern/6 PM Pacific Time
Led by Patricia Devine (@pat_devine)
Special Guest Betsy Rolland (@betsyrolland)
"The absence of an incentive to share seems about to change. The proposal by the medical editors outlines an approach that would require: a data-sharing policy when the study is started; a commitment to share within six months of publication; and that those who use the data acknowledge those who produced it."
Data Management plans and the idea of data sharing are growing in popularity and by in some cases required by policy. What are some of the social and technology issues around sharing and reusing data? How will the infrastructure be developed? Who will develop the guidance?
Join us and special guest Betsy Rolland, PhD, MLIS, MPH, National Cancer Institute Cancer Prevention Fellow and proponent of team science (betsyrolland.com) to discuss data management from a researcher’s perspective. Currently there is little crossover between the scientific literature community and the social science literature community, yet both groups are implicated in the data sharing future.
Some questions to consider:
- Who are all the interested parties who should be at the table to discuss the development of data management plans?
- Where will all the data be kept?
- Who will pay for the data storage and the time it takes to answer questions?
- Will each research group have to negotiate data use agreements/authorship?
- What are some of the challenges of data reuse? Will the original study have the right to refuse the new analyses? What if the new analyses used the data incorrectly? Will participants need to be re-consented?
References:
Toward Rigorous Data Harmonization in Cancer Epidemiology
Research: One Approach. Rolland B, Reid S, Stelling D, Warnick G, Thornquist M,
Feng Z, Potter JD: ow.ly/Z3cYP
First, design for data sharing. John Wilbanks & Stephen
H Friend: https://t.co/S3sOASEw1p
Public Responsibility in Medicine and Research (PRIM&R),
From the Director: Clinical Trial Data Sharing, the Law, and Reality: https://t.co/8PqctTaCUh
Beyond trust and reliability: reusing data in collaborative cancer epidemiology research. By Betsy Rolland and Charlotte P. Lee. http://dl.acm.org/citation.cfm?doid=2441776.2441826
Canadian Science Publishing (CSP) Blog: Open Access, Open Data, Open Science. By Melissa Cheung. http://www.cdnsciencepub.com/blog/open-access-open-data-open-science.aspx
NPR.org: Journal Editors to Researchers: Show Everyone Your Clinical Data. By Harlan Krumholz. http://www.npr.org/sections/health-shots/2016/01/26/464010931/journal-editors-to-researchers-show-everyone-your-clinical-data
NIH Data Sharing Policy and Implementation Guidance: http://grants.nih.gov/grants/policy/data_sharing/data_sharing_guidance.htm
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