Study protocol for putting the ‘Person’ in the PiCTuRE: an exploratory sequential mixed methods-based design, exploring how precision medicine is implemented and experienced by people living with a primary tumour of the craniospinal axis

Abstract Introduction Primary tumours of the brain and spine are rare, heterogeneous, and frequently associated with significant morbidity and mortality. Advances in precision oncology and personalised medicine offer the potential to accelerate diagnosis, improve clinical outcomes, and yield critical insights into the molecular biology of these cancers of unmet need. Despite this, patient engagement in this area remains limited. Well-organised neuro-oncological biorepositories—those that are clinically integrated, fully consented, and derived from routine care—are limited and fragmented, which impedes progress. Therefore, it is crucial to examine the barriers to tissue donation and data integration within the NHS by analysing patients’ lived experiences. The PiCTuRE (Personalised Consent in Tissue donation for neuroscience Research, lived Experiences) study aims to develop a digital platform that provides customised, individualised, and interactive support to assist patients in their decision-making regarding tissue donation for research and participation in related clinical trials. Methods & Analysis PiCTuRE is a multistage, mixed-methods, exploratory sequential investigation aimed at understanding the lived experiences of individuals donating tissue for research. It consists of three phases: Phase 1 involves an online survey to collect lived experience data, followed by semi-structured interviews to further explore individual perspectives. Thematic analysis will be performed to identify key themes. In Phase 2, patient-reported experience data will be gathered through co-design and statistically analysed to validate content for the development of the digital platform. Phase 3 will refine this intervention through iterative cycles of Phases 1 and 2, in collaboration with patients with lived experience of brain or spine tumours, to prepare it for integration into routine clinical practice. Ethics and Dissemination Ethical approval has been obtained via the Medical Sciences Interdivisional Research Ethics Committee (MS IDREC), University of Oxford (R79248/RE001). Findings will be disseminated via podium presentations, public patient initiatives in partnership with charities, in peer-reviewed publications and via social media. Trial Registration Number ISRCTN12601034.