The PCORI Perspective on Patient-Centered Outcomes Research

Abstract

The Patient-Centered Outcomes Research Institute (PCORI) was established as part of the US Patient Protection and Affordable Care Act of 2010 to fund patient-centered comparative clinical effectiveness research, extending the concept of patient-centeredness from health care delivery to health care research. In the United States, patient-centered outcomes research is new and not defined in the legislation, and the rationale is unclear to many. In this Viewpoint, we address 2 related questions: What does patientcenteredness in research mean? Why conduct patientcentered outcomes research? The essence of the PCORI definition of patientcentered outcomes research is the evaluation of questions and outcomes meaningful and important to patients and caregivers. The definition rests on the axiom that patients have unique perspectives that can change and improve the pursuit of clinical questions. Relevant to both the definition and rationale is the hypothesis that including the perspectives of end users of the research, which include patients, physicians, and other health care stakeholders, will enhance the relevance of research to actual health decisions these end users face. In turn, increased relevance is hypothesized to improve uptake of the evidence and improve the likelihood that patients will achieve the health outcomes they desire. Although this proposed causal chain is readily understood in relation to questions of direct interest to pa