Enhancing Equity in Cancer Clinical Trials: A Synthesis of Patient-Reported Barriers and Sustainable Solutions
Author(s)
Sarah Scruton, MSc1, Saadia Shareen, MSc2, Rosilene Kraft3, Chiquita Hessels3, Summer Konechny3, Samantha Pollard, PhD2.
1Nova Scotia Health, Halifax, NS, Canada, 2Simon Fraser University, Vancouver, BC, Canada, 3Patient Partner, Canada.
1Nova Scotia Health, Halifax, NS, Canada, 2Simon Fraser University, Vancouver, BC, Canada, 3Patient Partner, Canada.
OBJECTIVES: The development and evaluation of oncology therapeutics is premised on patient participation in clinical trials. However, low trial accrual is hampering evidence generation. Clinical trial designs addressing patient-reported barriers, informational needs, and concerns are urgently needed. We conducted a comprehensive review of the published literature to identify patient-reported barriers to trial access and participation, and recommendations for improved design.
METHODS: We conducted a scoping literature review of Ovid Medline to identify English-language preference-elicitation studies examining patient or caregiver reported barriers to cancer clinical trial access and participation. Titles and abstracts were screened by two authors followed by full-text review and data abstraction of included studies. Reference lists of included studies were then screened. Qualitative studies were synthesized narratively, and quantitative studies were summarized using descriptive statistics. Barriers and recommendations were then grouped into thematic categories.
RESULTS: The search yielded 2672 studies, with 39 meeting inclusion criteria. Barriers to trial participation spanned 1) logistical challenges (e.g. travel), 2) fear of adverse events or receiving sub-optimal treatment, 3) mistrust in healthcare providers, 4) language and cultural barriers, and 5) a lack of educational information provided during consent procedures. Included papers that reported recommendations suggested financial support for research participants, earlier access to culturally relevant education about clinical trials, and efforts to enhance trust between patients and trial investigators.
CONCLUSIONS: Reported barriers to trial participation often intersect with structural and social inequities, highlighting a need for inclusive, person-centered trial design. Addressing practical, personal, and informational barriers to trial participation is critical for timely evidence generation. Without interventions supporting and engaging patients, therapeutic evaluation will continue to be outpaced by clinical innovation. Equitable and culturally appropriate patient-informed strategies are required to reduce barriers and broaden access to trials. Results of this review are informing the development of a patient-driven oncology clinical design framework.
METHODS: We conducted a scoping literature review of Ovid Medline to identify English-language preference-elicitation studies examining patient or caregiver reported barriers to cancer clinical trial access and participation. Titles and abstracts were screened by two authors followed by full-text review and data abstraction of included studies. Reference lists of included studies were then screened. Qualitative studies were synthesized narratively, and quantitative studies were summarized using descriptive statistics. Barriers and recommendations were then grouped into thematic categories.
RESULTS: The search yielded 2672 studies, with 39 meeting inclusion criteria. Barriers to trial participation spanned 1) logistical challenges (e.g. travel), 2) fear of adverse events or receiving sub-optimal treatment, 3) mistrust in healthcare providers, 4) language and cultural barriers, and 5) a lack of educational information provided during consent procedures. Included papers that reported recommendations suggested financial support for research participants, earlier access to culturally relevant education about clinical trials, and efforts to enhance trust between patients and trial investigators.
CONCLUSIONS: Reported barriers to trial participation often intersect with structural and social inequities, highlighting a need for inclusive, person-centered trial design. Addressing practical, personal, and informational barriers to trial participation is critical for timely evidence generation. Without interventions supporting and engaging patients, therapeutic evaluation will continue to be outpaced by clinical innovation. Equitable and culturally appropriate patient-informed strategies are required to reduce barriers and broaden access to trials. Results of this review are informing the development of a patient-driven oncology clinical design framework.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR72
Topic
Patient-Centered Research
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Oncology