Transparency, trust and minimizing burden to increase recruitment and retentio in trials: A systematic review

Objective: To describe patient perspectives on recruitment and retention in clinical trials. Study Design and Setting: Systematic review of qualitative studies that reported the perspective of adult patients with any health condition who accepted or declined to participate in clinical trials. Results: Sixty-three articles involving 1681 adult patients were included. Six themes were identified. Four themes reflected barriers: ambiguity of context and benefit – patients were unaware of the research question and felt pressured in making decisions; lacking awareness of opportunities – some believed health professionals obscured trials opportunities, or felt confused because of language barriers; wary of added burden – patients were without capacity because of sickness or competing priorities; and skepticism, fear and mistrust – patients feared loss of privacy, were suspicious of doctor's motivation, afraid of being a guinea pig, and disengaged from not knowing outcomes. Two themes captured facilitators: building confidence – patients hoped for better treatment, were supported from family members and trusted medical staff; and social gains and belonging to the community – altruism, a sense of belonging and peer encouragement motivated participation in trials. Conclusion: Improving the visibility and transparency of trials, supporting informed decision making, minimizing burden, and ensuring confidence and trust may improve patient participation in trials.