Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Abstract

PurposeTo provide an overview of PCORI’s approach to engagement in research.MethodsThe Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI’s approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research.ResultsTo understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI’s capacity building and guidance to awardees via the Engagement Rubric. PCORI’s unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI’s major infrastructure initiative, PCORnet.ConclusionPCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

Changing Health Technology Assessment Paradigms?

“…This has led to the recognition that all regulatory and HTA bodies need to work together, and with patients, if these approaches are to achieve their goals of giving patients faster and more appropriate access to promising new technologies (17).…”

Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

“…The move towards the greater involvement of patients as research partners or active collaborators seeks to ensure that patients are co-drivers through all stages of PROM development, selection, implementation and evaluation [5,22,[27][28][29]. The resulting co-production, or co-selection, of a PROM seeks to ensure that the measure has greater resonance with all stakeholders, the data is taken seriously and that it is, indeed, fit for purpose.…”

“…The resulting co-production, or co-selection, of a PROM seeks to ensure that the measure has greater resonance with all stakeholders, the data is taken seriously and that it is, indeed, fit for purpose. Moreover, growing evidence highlights that patient involvement has its greatest value when structured early in study development, and its least when added as if an afterthought [2,22,23,26,29]; this was recognised early in the development of the National Institute for Health Research (NIHR) [30].…”

Introduction to special section on patient engagement

“…Such a foundation provides important structure for generating relevant and meaningful hypotheses, and can guide different aspects of the study, including the design, procedures, measures, and statistical models tested. Frank et al [1] offer a useful conceptual model of patient-centered outcome research. This model underlies the focus and funding priorities of the Patient-Centered Outcome Research Institute (PCORI), a nonprofit, nongovernmental organization located in Washington, D.C. Congress authorized the establishment of PCORI in the Patient Protection and Affordable Care Act of 2010.…”