Engaging patients and stakeholders in research proposal review: the patient-centered outcomes research institute

• Published in: Annals of internal medicine Vol. 161; no. 2; p. 122
• Main Authors: Fleurence, Rachael L, Forsythe, Laura P, Lauer, Michael, Rotter, Jason, Ioannidis, John P A, Beal, Anne, Frank, Lori, Selby, Joseph V
• Format: Journal Article
• Language: English
• Published: United States 15.07.2014
• Subjects: Biomedical Research; Humans; Patient Outcome Assessment; Patient Participation; Patient Protection and Affordable Care Act; Peer Review, Research; Research Design; United States; United States
• ISSN: 1539-3704
• DOI: 10.7326/M13-2412

The inaugural round of merit review for the Patient-Centered Outcomes Research Institute (PCORI) in November 2012 included patients and other stakeholders, as well as scientists. This article examines relationships among scores of the 3 reviewer types, changes in scoring after in-person discussion, and the effect of inclusion of patient and stakeholder reviewers on the review process. In the first phase, 363 scientists scored 480 applications. In the second phase, 59 scientists, 21 patients, and 31 stakeholders provided a "prediscussion" score and a final "postdiscussion" score after an in-person meeting for applications. Bland-Altman plots were used to characterize levels of agreement among and within reviewer types before and after discussion. Before discussion, there was little agreement among average scores given by the 4 lead scientific reviewers and patient and stakeholder reviewers. After discussion, the 4 primary reviewers showed mild convergence in their scores, and the 21-member panel came to a much stronger agreement. Of the 25 awards with the best (and lowest) scores after phase 2, only 13 had ranked in the top 25 after the phase 1 review by scientists. Five percent of the 480 proposals submitted were funded. The authors conclude that patient and stakeholder reviewers brought different perspectives to the review process but that in-person discussion led to closer agreement among reviewer types. It is not yet known whether these conclusions are generalizable to future rounds of peer review. Future work would benefit from additional data collection for evaluation purposes and from long-term evaluation of the effect on the funded research.