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Three years into the creation of the Patient-Centered Outcomes Research Institute (PCORI) under the Affordable Care Act, the Partnership to Improve Patient Care (PIPC) embarked on a mission to evaluate PCORI’s progress in meeting its statutory mandate to prioritize, conduct, and communicate comparative effectiveness research (CER) in ways that are patient-centered – or to quote PCORI, identify what it means to do “research done differently.” Our analysis, as outlined in a new white paper, focuses on a number of issues pertaining to PCORI including: patient centeredness, patient engagement, research methods, research priorities, advisory panels, research dissemination, evaluation, and funding.
PIPC’s analysis of PCORI’s progress resulted in following recommendations: (1) PCORI should embrace the expertise of specific patient and provider communities to identify research priorities, to be partners in research, and to develop dissemination strategies for research relevant to their needs. (2) PCORI should establish meaningful, specific national research priorities, and “enter into contracts for the management of funding and conduct of research” per its authorizing statute. (3) PCORI should create expert advisory panels that have a depth of expertise on the specific topic that will be developed into a targeted funding announcement to ensure that the resulting research is useful to patients and their providers. (4) PCORI’s Methodology Committee should focus its work on the activities mandated by its authorizing statute, to develop methodological standards for research and a translation table. (5) PCORI should continue its efforts to develop improved strategies for dissemination and communication of research findings, in consultation with patients, providers and other stakeholders. (6) PCORI should adopt an evaluation model that looks critically at the impact of PCORI’s stakeholder engagement and other activities on its mission to be truly patient-centered, and should also develop criteria for self-evaluation.
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