This is the third of 3 recommendations a group of Boston-based PCORI Ambassadors made to the PCORI Board in November. The first was Expanding the Scope of Research Questions Funded, the second, Micro-contracts.
Researchers typically struggle to include patients/consumers in their research design, implementation, and dissemination. The power dynamic favors the researcher, not the patient. Government and industry fund research with a major focus on medical (drug) interventions not social and behavioral determinants that impact patients/consumers. The researchers attempt to publish in peer-reviewed journals. The researchers and funders favor publishing the results that support their hypotheses.
No matter how brilliant the design, or even if patients are truly engaged in the design, there needs to be clear ways to ensure equitable access to research, cultural competency in implementation of research, and diverse participation in research. All too often recruitment plans are reduced to a paragraph, and research staff are running around trying to figure out how to get more people enrolled. PCORI could bolster the application process to require consumer/patient involvement in design, implementation, and dissemination. Some researcher applicants would embrace the involvement, while others would meet the letter, not the spirit of the requirement. Dissemination to the lay public and dissemination of negative findings have low priority in research budget management.
Route a defined proportion of funding through consumer/community organizations with experience recruiting patients for proposal review and other research tasks that then allocates to researchers and disseminators. The consumer/community organization enlists researchers to conduct the patient-centered outcomes research and publish in academic journals and allocates a proportion of the funds to dissemination to the relevant community.
My next post will reiterate the three recommendations and consider how best to move the dial on a larger scale. What other recommendations should be made to PCORI? How can we best influence PCORI to be a positive force? What other venues are there to influence? What other recommendations could be made to these venues?