1. Using action research and a community-academic partnership to understand clinical trial participation: a patient-centered perspective
- Author
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Sara Santarossa, Michele Baber, Janine Hussein, Chrystal Oley, Kristen Slangerup, Dana Murphy, and Karen E. Kippen
- Subjects
Action research ,Community-academic partnership (CAP) ,Patient-centered ,clinical trials ,Medicine ,Medicine (General) ,R5-920 - Abstract
Abstract Background Clinical trials that are patient-centered appear to be more successful (e.g., clinical outcomes, improved communication, mutual empowerment, changed attitudes), thus, action research may be a field of importance. The current study explores the Formation and Execution of Activities phases of a community-academic partnership (CAP). Methods Members consisted of industry stakeholders, a healthcare/academic institution, and patients/families with lived experiences as cancer survivors and/or caregivers. Retrospectively, CAP members described the facilitating and/or hindering factors present in the partnership development. A document review process was used. Field notes from three CAP meetings, which focused on understanding clinical trial participation, were analyzed using a thematic approach. Results Seven facilitating and three hindering factors were present. Interpersonal (vs. operational) processes were referenced as influential facilitating factors more often. Themes that emerged included ‘trials as a treatment option’, ‘leaving a legacy’, and ‘timing is critical.’ Conclusion This study provides a patient-centered perspective on barriers/challenges of clinical trial participation and how to improve future perceptions.
- Published
- 2024
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