Abstract B038: Engaging community members in cancer research: The Making Research CLEAR Program

Abstract

Abstract Background: Patient and community engagement in research has the potential to restore trust in science by making scientific processes more transparent and leveling the balance of power. Despite the importance of engaging community members in research, multiple barriers from the perspective of the investigator, cancer center, and community member exist. The Sidney Kimmel Cancer Center (SKCC) developed and implemented the Making Research CLEAR (Community Learning and Experience about Cancer) program as a way to bridge the gap between the cancer center and the community. Program Features: The CLEAR Program aims to create shared understanding and bidirectional communication between community members and research scientists. CLEAR is designed to empower and educate community members, considered to be cancer patients, survivors, caregivers or advocates, and advance patient-focused oncology research. Community members who participate in CLEAR are matched one-on-one with a scientist who specializes in cancer research to experience the intricacies of basic, clinical, population or translational research. We designed a curriculum to provide a well-rounded experience including group orientation, time spent observing in the lab, and optional additional activities like completing human subjects training, observing an IRB meeting, or attending grand rounds lectures. Additional program development included design of program logo and promotional materials, creation of a confidentiality disclosure agreement, and creation of baseline and post surveys for program evaluation. Evaluation: We recruited for the first cohort of CLEAR via a paid Facebook advertisement and selected 3 community members with diversity in scientific knowledge, patient advocacy experience, socioeconomic status, race, and gender. Each were matched with an SKCC investigator; one participant completed an 8-week version of the program, while two completed a 12-week version. Community members and investigators completed a survey via Qualtrics and a post program interview to provide program feedback. Post-program surveys of community members demonstrated stronger agreement with statements like ‘I understand current cancer research efforts’, and ‘Doctors and health care workers would not involve me in research that might be harmful’ and stronger disagreement with statements like ‘Doctors and healthcare workers sometimes involve patients in medical research without their knowledge or permission’. Lessons Learned: There was strong agreement from all community members that the program had a positive impact on transparency of the scientific process and incorporating community members into research. Community members requested more information and resources about scientific concepts and common acronyms. Investigators need additional support on answering questions from community members that are outside their scientific domain. The SKCC CLEAR program will continue to refine program activities as it enrolls its next cohort in the Fall of 2022. Citation Format: Rebecca Melillo, Quincy Greene, Joshua Banks, Amy Leader. Engaging community members in cancer research: The Making Research CLEAR Program [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B038.