A viewpoint published Oct. 14 in the Journal of the American Medical Association,  discusses the meaning of patient-centeredness in research and the importance of conducting patient-centered outcomes research through the Patient-Centered Outcomes Research Institute (PCORI).

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According to lead author Lori Frank, PhD, Patient-Centered Outcomes Research Institute, Washington, DC, “The essence of the PCORI definition of patient-centered 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.”

While the evidence-base supporting the specific benefits of active engagement of patients in research is limited, Frank et al. point out the evolving positive and negative effects. Beneficial outcomes of engagement include improved content and construct validity of measures, improved research recruitment and retention rates, and improved relevance of study results to patients. On the same token negative consequences include the added financial and staff resources needed to establish and maintain engagement, as well as a sense of work burden that can occur among patient participants. Whether positive, negative, or neutral, PCORI intends to contribute to this evidence by evaluating the effects of engaged models on research.

In addition to currently funding a variety of strategies for incorporating the patient perspective, wherein research teams must determine which stakeholders best represent the perspectives that can enhance the project, facing the challenge of preparing stakeholders for research and ensuring that viewpoints are expressed,  PCORI is also further ensuring the patient-centeredness and end-user relevance of the research it funds through merit review, bringing together scientists, patients, and other health care stakeholders as equal assessors, incorporating their multiple perspectives into funding decisions. Taking a patient-centered approach in both the research and funding review processes is intended to produce research that looks beyond the typical questions and measures usually found within a researcher’s field of view.

“PCORI funds research based on the belief that incorporating the patient perspective into health care research is inherently valuable and that including the end user of research in the research process enhances usefulness and speeds the uptake of research into practice,” concludes Frank. “Patient-centered outcomes research is poised to substantially change how clinical questions are asked, how answers are pursued, and how those answers are used.”

Keywords: Financial Management, Health Resources, American Medical Association, Patient Participation, Health Services Research, Patient Outcome Assessment, Caregivers

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