The American Medical Informatics Association (AMIA) has submitted comments on an intended data access and data sharing plan that the Patient-Centered Outcomes Research Institute released in the time period of late 2016.
PCORI is an independent agency authorized by Congress in the year of 2010 that funds clinical effectiveness research to assist healthcare stakeholders to make informed health decisions. These involve clinicians, patients, employers, insurers and policymakers.
In its comments, American Medical Informatics Association recommended PCORI consider needing a preliminary data sharing plan as part of the award application. The agency representing healthcare informatics experts also called for earmarking particular 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 genuine analyses to maximize the integrity of findings and promote data sharing to enable conduct of extra analyses, AMIA contends in its comments.
“The data access and sharing is significant and foundational to advance and modern scientific discovery,” claims AMIA President and CEO Doug Fridsma, MD. The PCORI plan, he added, will make sure that comparative effectiveness research adds to evidence-based medicine while tearing down data silos.
Other AMIA suggestions to PCORI involve defining metadata that includes requisite attributes and vocabularies utilized to give attributes as an explicit component of the Analyzable Data Set; motivating use of emerging community metadata models; and developing ways to ensure data originators get credit for their work. The PCORI request for comment is available here.
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