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.
Clinical trials are more successful when patients are engaged, and their perspectives have been considered in the study design. Community-academic partnerships (CAPs) are one way to ensure patients are more engaged in the research process by creating a collaboration where all parties involved play an equitable role. We provide an example of a CAP with an industry stakeholder, a healthcare/academic institution, and patients as well as families with lived experiences as cancer survivors and/or caregivers. Described here two phases of the CAP: the Formation and the Execution of Activities phases. The Formation phase covers the collaboration process and development of the CAP. In our study, to better understand this phase, CAP members described what did and did not go well during the partnership development. We found more aspects went well than did not and that processes related to the quality of the relationship and communication among CAP members were important. The Execution of Activities phase focuses on how the CAP is working towards an agreed upon outcome. In our study, to better understand this phase, we reviewed notes taken at previous CAP meetings that focused on exploring participation in clinical trials as a treatment option. We found that when it comes to participation in clinical trials, patients and/or caregivers with lived experiences with cancer, felt that timing of this treatment option was important and that reasons for participation included wanting to leave a legacy. In this paper we describe some challenges of clinical trial participation, identified by patients and caregivers, and discuss how to improve views of clinical trial participation in the future.
