On March 7, 2014, the Partnership to Improve Patient Care (PIPC) convened a group of its Steering Committee members, along with individuals serving on the Patient-Centered Outcomes Research Institute (PCORI) Patient Engagement Advisory Panel (PEAP) and PCORI staff. The purpose of the roundtable was to discuss how PCORI should evaluate its activities against a patient-centered framework using metrics that are most useful to patients. PIPC Chairman Tony Coelho opened the meeting by emphasizing the importance of PCORI having a patient constituency, and the potential for PCORI’s evaluation framework to be a tool for organizing patients in support of PCORI’s patient-centered research model.
During the introductory period, PIPC Steering members noted their strong support for patient engagement in research, calling the discussion on how to assess the “patient-centeredness” of PCORI’s work “long-overdue.” It was noted that other large research organizations may engage patients twice per year in a large meeting of patient groups. In contrast, PCORI’s Board Chairman, Dr. Gray Norquist is perceived to be distinguishing PCORI by seeking to establish processes for truly engaging patients in setting the direction of 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 certainly the first to truly focus on patients’ research needs, their reactions to the research, and their role in conducting research.
PIPC Chairman Tony Coelho articulated the strong support of patient groups for PCORI’s patient-centered directives. He also warned of the lingering opposition to PCORI’s patient-centered infrastructure. The patient representatives at the roundtable agreed that they strongly supported conducting comparative clinical effectiveness research directed by patient needs, outcomes and preferences during the Affordable Care Act debate. Therefore, PCORI must be identified by patients, patient groups, caregivers and providers as a critical part of the healthcare system in order to succeed. A strong evaluation framework should validate to patients that PCORI takes patient engagement seriously, and intends to measure its use and its impact both within PCORI, and outside PCORI.
PIPC Chairman Tony Coelho articulated the strong support of patient groups for PCORI’s patient-centered directives. He also warned of the lingering opposition to PCORI’s patient-centered infrastructure. The patient representatives at the roundtable agreed that they strongly supported conducting comparative clinical effectiveness research directed by patient needs, outcomes and preferences during the Affordable Care Act debate. Therefore, PCORI must be identified by patients, patient groups, caregivers and providers as a critical part of the healthcare system in order to succeed. A strong evaluation framework should validate to patients that PCORI takes patient engagement seriously, and intends to measure its use and its impact both within PCORI, and outside PCORI.
| pipc_steering_evaluation_summary_and_recs_2.pdf |
