The Professional-Volunteer Paradox: Transforming Lived Experience into a Sense of Purpose in Dutch Oncology Patient...

Transforming lived experience into a sense of purpose through patient advocacy in oncology research and policy development is increasingly demanded. However, the long-term sustainability of patient advocates - who formally operate as unpaid volunteers - remains under-researched. This study explores the motivational drivers and structural hurdles characterising the field of Dutch oncology patient advocacy to identify the prerequisites for a sustainable patient voice in oncology research and policy development.

We conducted a qualitative study among 16 Dutch oncology patient advocates using semi-structured interviews based on the self-determination theory and the Job-Demands-Resources model. Data were analysed through thematic analysis, to understand participant's experiences, motivations and the structural dynamics of their roles.

Participants fulfil three primary advocacy roles: strategic policy representation, knowledge translation and organisational support. Engagement is driven by an intrinsic motivation to transform lived experience into experiential expertise, supported by the fulfilment of the needs for autonomy, competence and relatedness. However, this drive is challenged by significant job demands, including emotional burden, responsibility burden, high workload and organisational demands, and health constraints. While advocates provide mandatory input for research funding, they navigate a landscape of inconsistent financial compensation and varying levels of professional appreciation.

The findings of this study reveal a "professional-volunteer paradox": a systematic tension that challenges the sustainability of the patient voice in oncology research and policy development. To move from symbolic participation toward empowered partnership, a shift in perspective is required. This necessitates institutionalising professional support, fostering role clarity, and ensuring financial and structural equity. By acknowledging advocates as professional experts whose experiential authority is essential, healthcare systems can secure a robust and sustainable role for the patient advocate voice in the future of oncology research and policy development.