During the introductory period, our PIPC Steering Committee members noted their strong support for patient engagement in research, with several calling the discussion on how to assess the “patient-centeredness” of PCORI’s work “long-overdue.” It was noted that while other large research organizations may engage patients twice per year in a large meeting of patient groups, PCORI, with strong support from it’s Board Chairman, Dr. Gray Norquist, seeks to truly engage patients in setting the direction for its research priorities and agenda. It was also noted that PCORI is the first major research entity to include patient representatives on the Board, and to really focus on patients’ research needs, their reactions to the research, and their role in conducting research.
PIPC’s strongly supported the law’s patient-centered directives for PCORI. But we must remain vigilant to lingering opposition in some quarters to PCORI’s patient-centered infrastructure.
I am proud that PIPC’s members supported the creation of an independent institute that conducts comparative clinical effectiveness research directed by patient needs, outcomes and preferences. To succeed in its patient-centered mission, I think that we all can also agree that PCORI must continue to be identified by patients, patient groups, caregivers and providers as a critical part of the healthcare system. Therefore, in order to ensure the future of this commitment to patient-centered research, PCORI would be wise to adopt a strong evaluation framework that appropriately measures the extent to which PCORI’s work is truly being led by patients.