“What I Would Like to Say…”: The effectiveness of the BU PIER Community Researcher Model on capturing the voices of disabled peoples’ experiences of cancer services in the UK

Abstract

Disabled people experience persistent inequities in accessing cancer screening, diagnosis, treatment, and care in the UK, shaped by structural ableism and inaccessibility. These inequities contribute to delayed diagnosis, reduced uptake of screening programmes, and poorer experiences of cancer care when compared with non-disabled populations. Despite this, disabled people remain underrepresented in health and social care research, often due to inaccessible research processes and limited opportunities for meaningful involvement. This paper reflects on the effectiveness of the Bournemouth University Public Involvement in Education and Research (BU PIER) Community Researcher Model in capturing and representing disabled people’s cancer service experiences.

The BU PIER Community Researcher Model is an asset-based participatory framework designed to build research capacity within voluntary and community sector organisations by supporting individuals with lived experience to lead research in partnership with academic and clinical stakeholders. This model was applied within the 10-month pilot study ‘What I Would Like to Say…’, commissioned by Macmillan Cancer Support and Wessex Cancer Alliance. The project was led by two community researchers with lived experience of disability and neurodivergence, supported by university researchers, a cancer clinical nurse specialist, and voluntary sector partners.

Data were generated through four face-to-face arts-based workshops involving 45 disabled and neurodivergent participants. Creative methods were used to support accessible engagement with a sensitive topic, enabling participants to share their experiences through handprint artworks and informal semi-structured discussions. Data were analysed using collaborative thematic analysis integrating lived experience, clinical, and academic perspectives.

Findings indicate that the BU PIER Community Researcher Model was effective in eliciting rich, nuanced accounts of cancer service experiences. Three key themes emerged: the importance of accessibility (including financial and environmental adjustments), the value of creating a relaxed and supportive environment, and the need for participants to feel listened to and valued. Shared lived experience within the research team was central to trust-building and participant engagement. The paper concludes that the BU PIER Community Researcher Model offers an effective approach for inclusive research with disabled communities and has the potential to inform improvements in equitable cancer service provision.