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PCORI Adopts Policy for Data Management and Data Sharing

September 14, 2018

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PRESS CONTACTS
Anne Berry, Lead Specialist, Implementation Research & Policy

The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors Sept. 7 approved the new PCORI Policy for Data Management and Data Sharing. The policy supports PCORI’s commitment to advancing open science and requires certain PCORI-funded researcher teams to share their study data and documentation for secondary use and analysis.

In 2016, the AAMC submitted a comment letter when PCORI sought stakeholder input on the draft policy for data access and data sharing [see Washington Highlights, Jan. 6, 2017]. The association commended PCORI for its “commitment to maximizing the utility and usability of data collected in research projects that PCORI funds,” and, among other observations, recommended that the policy should include requirements for third-parties requesting use of data and prohibit the data from being used to re-identify research participants. Both recommendations were incorporated into the final version of the policy.

While developing the policy, PCORI also received feedback through convening an expert advisory group and conducting a pilot project. Additionally, since 2015, PCORI has included language in its funding announcements and research contracts that specified awardees were required to develop a data management and data sharing plan.

Moving forward under the new policy, the institute will provide funding for awardees to prepare and deposit data and protocols into a designated data repository. PCORI will implement the new policy in stages and plans to host a Town Hall for current awardees in early October.

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