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

Dana Ketcher, Anne Bidelman, Liem Q. Le, Amy K. Otto, Daniel K. Lester, Kim K. Amtmann-Beuttner, Brian D. Gonzalez, Kenneth L. Wright, Susan T. Vadaparampil, Maija Reblin, Eric K. Lau

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)64-74
Number of pages11
JournalTranslational Research
Volume227
DOIs
StatePublished - Jan 1 2021
Externally publishedYes

Bibliographical note

Funding Information:
We are incredibly grateful to all the patients, family members, clinicians, researchers, faculty, and institutional administrators who provided their time, support, assistance, feedback, and experiences with us during the PRFs. Special thanks to the Moffitt Research Executive Committee for their insight and support, and particularly to Jim Mulé for his financial support of the PRF series. This work was also supported in part by the Participant Research, Interventions, and Measurement Core at the H. Lee Moffitt Cancer Center & Research Institute , a comprehensive cancer center designated by the National Cancer Institute and funded in part by Moffitt's Cancer Center Support Grant ( P30-CA076292 ); T32-CA090314 (PIs: Vadaparampil and Thomas H. Brandon); and internal funding. The authors declare no potential conflicts of interest and all authors have read the journal's policy on disclosure of potential conflicts of interest. All authors have read the journal's authorship agreement and the manuscript has been reviewed by and approved by all named authors.

Publisher Copyright:
© 2020 Elsevier Inc.

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