Expanding upon the Promise of PCOR: The Patients Program Learning PCOR System Framework

Research ObjectiveMany PCOR studies apply principles aligned with the PCORI engagement rubric while planning, conducting, and disseminating research. Nonetheless, institutions may lack the capacity to incorporate emerging PCOR methods and results across their research infrastructure efficiently, which can limit opportunities for shared “learning” that occurs within an individual study across projects and PCOR teams.To address this gap, The PATIENTS Program at the University of Maryland, Baltimore developed a PCORI‐funded framework for a “Learning PCOR System”. A Learning PCOR System generates PCOR evidence, synthesizes PCOR evidence from the peer‐reviewed literature and other reliable sources, and prioritizes and interprets PCOR evidence for all stakeholders so that they remain actively engaged across the PCOR continuum ‐ not just when they are involved in an individual PCOR study.Study DesignPublic deliberation is an approach designed to elicit informed public views on complex issues. The four steps of public deliberation are: 1) Convene, 2) Learn, 3) Deliberate, and 4) Report. In collaboration with BCT Partners, The PATIENTS Program designed the four deliberative sessions for this project to mirror the 10‐Step Framework Continuous Patient Engagement in Comparative Effectiveness Research: 1) planning;2) doing;3) sharing;and 4) delivering results. The Stakeholder Advisory Board co‐developed a list of potential participants, stakeholders strategically positioned and willing to participate in co‐developing, conducting, translating, and/or disseminating PCOR to its stakeholder community. In response to the COVID‐19 pandemic, all four sessions were conducted virtually using the Zoom conference platform.The team conducted exit interviews with participants to evaluate each session's process and materials. Individual session results in the form of notes and an infographic were sent to participants for review and feedback. The proposed framework was developed based on the information collected from each of the deliberative sessions and exit interviews.Population StudiedSessions had representation from patients, healthcare providers, PCOR researchers, and other stakeholders, including patient advocates, community leaders, payers (insurers), and policymakers. All participants had participated in at least one PCOR study prior to the sessions.Principal FindingsThe iterative deliberative process model provided a scaffold to ensure stakeholder voices were included at every step of the Learning PCOR System framework, to facilitate The PATIENTS Program “learning while doing”.ConclusionsA Learning PCOR System built with the input from diverse stakeholders allows for PCOR practitioners to effectively and rapidly share results and PCOR methods across an institution and build connections across PCOR teams. It also provides a space for bi‐directional learning between community members, stakeholders, patient advisors, and researchers.Implications for Policy or PracticeA Learning PCOR System has the capacity for authentic shared learning across PCOR studies and incorporation of patient preferences, cultural and healthcare delivery context. Emerging evidence can be rapidly returned to patients and other stakeholders who could benefit from the information to increase engagement in PCOR research. In addition, other regions experiencing a lack of trust with patient communities could utilize the framework to improve their PCOR systems. Establishing trust with PCOR partners and recruitment populations builds bridges for open and enduring engagement.Primary Funding SourcePatient‐Centered Outcomes Research Institute.