The Patient-Centered Outcomes Research Institute (PCORI) has approved a new policy that will encourage data sharing among researchers with the goal of accelerating big data analytics and secure health information exchange.
The new policy strengthens PCORI’s commitment to open science by allowing researchers to verify and build on past findings from PCORI-funded studies and generate new evidence for healthcare decision-makers.
Research teams that have received PCORI funding will place the data generated from their studies, as well as documentation for how that data was produced, into a repository designated by PCORI.
The data, which could include deidentified participant information, full protocols, metadata, and statistical analysis plans, can then be made available for other research teams for additional analysis. PCORI will also provide funding to researchers so that they can prepare the data and other materials for sharing.
“Through this data sharing policy, we’re taking a major step in advancing open science,” said PCORI Executive Director Joe Selby, MD, MPH.
“By supporting how others may use information generated by the studies we’ve funded, we’re helping to enhance the quality and increase the quantity of evidence for healthcare decision making. We’re also reducing redundancy in collecting clinical data sets, which can speed research and the production of more useful evidence.”
PCORI will also require that all personal health information is de-identified to protect the privacy of study participants.
Additionally, informed consent from study participants is required to permit the reuse of data. PCORI will review requests before granting access.
The new data sharing policy is part of a series of initiatives from PCORI that aim to support research transparency and ensure broad availability of high-quality health data assets.
The organization’s policy on peer review and public release of research findings ensures that all results from PCORI-funded studies undergo a review and are made publicly available on PCORI’s website in a final research report.
In addition to the reports, PCORI offers brief summaries of studies and their findings that are posted as public and professional abstracts on the website.
The Institute also has a public access policy in place to cover the costs for journals to make papers presenting the results of PCORI studies freely available to the public.
By approving this new data sharing policy, PCORI expects to expand on these past initiatives and accelerate healthcare innovation.