Partnering patients, caregivers, and basic scientists: an engagement model that fosters patient- and family-centered research culture

Abstract

Traditionally, basic scientists have not been as engaged in the translational continuum when it comes to engagement with patients, caregivers, and other community stakeholders. In order to address this discrepancy, a multi-disciplinary team at Moffitt Cancer Center conceived of and enacted the Patient-Researcher Forum (PRF) to promote a community-engaged research approach through communication, compassion, and bi-directional research insight for both patients/caregivers and researchers. We outline the structure and implementation of the PRF, its participants, and qualitative and quantitative results across 14 sessions. PRF sessions were conducted between July 2018 and October 2019 and included 29 patients/caregivers and close to 200 researcher/staff participants; post participation survey response rates assessing the PRF experience were 27.6% (patients/caregivers) and 60.3% (researchers) on average. Research staff overwhelmingly reported that the PRF was beneficial, citing that it helped them gain new patient-centered perspectives and helped them practice communicating research to lay audiences. Patients/caregivers also reported that the PRF was valuable, indicating that they gained a better understanding of research and that they developed a personal connection with researchers. Our PRF model may provide a strategy for improving basic scientist communication, ethics, and understanding of research impacts on the populations they wish to serve. This innovative model provides a much-needed direct connection between basic scientists and patients/caregivers which creates a 2-way learning platform that fosters understanding and research ideas in the spirit of community-engaged research.