AMIA seeks data sharing plan for clinical research

The American Medical Informatics Association has submitted comments on a proposed data access and data sharing policy that the Patient-Centered Outcomes Research Institute issued in late 2016.




PCORI is an independent organization authorized by Congress in 2010 that funds clinical effectiveness research to help healthcare stakeholders make informed health decisions. These include patients, clinicians, employers, insurers and policymakers.

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In its comments, AMIA suggested PCORI consider requiring a preliminary data sharing plan as part of the award application. The organization representing healthcare informatics professionals also called for earmarking specific amounts of grant funds to support data preparation and curation.

In its request for comment, PCORI laid out expectations for researchers granted funding to reproduce original analyses to increase the integrity of findings and promote data sharing to enable conduct of additional analyses, AMIA notes in its comments.

“Data access and sharing is foundational to advance scientific discovery,” says AMIA President and CEO Doug Fridsma, MD. The PCORI plan, he added, will ensure comparative effectiveness research adds to evidence-based medicine while tearing down data silos.

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Other AMIA recommendations to PCORI include defining metadata that includes requisite attributes and vocabularies used to provide attributes as an explicit component of the Analyzable Data Set; encouraging use of emerging community metadata models; and establishing ways to ensure data originators receive credit for their work. The PCORI request for comment is available here.