39 Barriers to participation in research: the experience of people with brain tumours

Abstract Introduction Brain tumours remain the biggest cancer killer of people under 40, with minimal survival improvements over recent decades. Despite the critical role of research in advancing understanding, improving treatments and ultimately, patient outcomes, many people diagnosed with brain tumours experience significant barriers to participating in research activities such as clinical trials or tissue donation. This report explores the systemic and patient-centred barriers that hinder research participation for people affected by brain tumours in England. Methods The barriers to research participation were identified through a rapid review of existing literature, focus groups with patients, family members, and carers, and semi-structured interviews with clinicians, researchers and key stakeholders. Qualitative data were thematically analysed to identify prominent structural and patient level barriers to research participation. Results At the system level, limited availability of brain tumour trials, geographic inequities, fragmented referral pathways, and insufficient research infrastructure constrained participation. Workforce pressures and lack of protected research time further limited clinician engagement. At Trust level, inconsistencies in tissue collection, biobanking practices, and data sharing reduced research capacity. At the patient level, cognitive side effects, limited awareness of research opportunities, and complex consent processes limited enrolment into trials. Communication gaps between care teams and patients, combined with the emotional burden at diagnosis, further reduced recruitment. Collectively, these factors contribute to some of the lowest clinical trial participation rates among cancer populations. Conclusions The report argues that overcoming these barriers requires coordinated national action, including dedicated policy change, targeted investment, standardised research processes, and improved patient communication and support. The key recommendations focus on strengthening research registries, standardising tissue banking, making reasonable adjustments to the consent process, and embedding research within routine clinical care.