# 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

## TL;DR

This study explores how people with brain and spine tumors experience and engage with precision medicine and tissue donation for research.

## Contribution

The study introduces a mixed-methods design to co-develop a digital platform for personalized tissue donation support in neuro-oncology.

## Key findings

- Patient experiences and barriers to tissue donation will be explored through surveys and interviews.
- A digital platform will be co-designed with patients to support decision-making for research participation.
- Findings will inform broader oncological and rare disease research engagement strategies.

## Abstract

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.

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.

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.

ISRCTN12601034.

The online version contains supplementary material available at 10.1186/s12885-025-13795-9.

Strengths.

• Provides valuable insights into the lived experiences of individuals diagnosed with rare primary tumours of the craniospinal axis.

• Explores potential barriers to tissue donation for research and participation in molecular data-driven clinical trials.

• Findings are likely to be applicable to other oncological or rare disease populations.

• Integrating mixed-methods, patient-involved data offers deeper insights into research engagement challenges and more effective solutions.

• Data is collected across the UK, offering a broad national perspective.

Limitations.

• The UK-based data may not fully reflect the diversity of global populations.

• The nature of the diagnosis may contribute to a reluctance among these patients to participate in the research.

The online version contains supplementary material available at 10.1186/s12885-025-13795-9.