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Updated: Nov 19, 2025

Working with Human Tissues for Translational Cancer Research
Published on: November 26, 2015
Transparency, trust and minimizing burden to increase recruitment and retention in trials: a systematic review
Patrizia Natale1, Valeria Saglimbene2, Marinella Ruospo2
1Sydney School of Public Health, University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia; Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
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.
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