Introduction
Patient and Public Involvement and Engagement (PPIE) is central to equitable cancer governance, yet limited understanding of how mechanisms are institutionalised within public administration risks leaving efforts to strengthen PPIE fragmented and unevenly implemented. A structured overview of existing practices in oncology and the relevant regulatory and organisational frameworks is therefore essential.

Methods
As part of the Horizon Europe funded ECHoS project, a European cross-national analysis was conducted among key stakeholders within national public administration involved in cancer policy and governance. The assessment drew on a structured expert survey based on indicators adapted from the WHO resolution on social participation, complemented by qualitative input from patient organisation representatives. Findings were analysed descriptively and thematically across WHO-aligned thematic domains.

Results
Survey responses were obtained from 16 of the 30 participating ECHoS countries. Formal representation in oncology advisory structures was reported by 63% of countries. SOPs requiring PPIE in programme evaluation existed in 44%. Training provision was limited, with over half of countries reporting no or unclear availability. Participation in NCCP implementation was structured in 44%, while 38% reported only occasional involvement. Accessibility and inclusion were inconsistent, with partnerships with underserved groups in 50% of countries. Participation across the policy cycle was highest in policy development (88%) and declined in implementation (56%) and monitoring and evaluation (44%). Resource gaps were substantial, with 44% lacking sustainable funding and only 31% reporting remuneration policies. Capacity building for civil society was often ad hoc, and no country reported systematic tracking of PPIE outcomes.
Qualitative input obtained from 5 patient organisations highlighted enabling conditions where legal mandates and clearly defined committee roles exist, reinforced by patient organisations’ own capacity to support representatives and EU-level frameworks that set shared expectations. In contrast, PPIE is often constrained by resource insecurity and lack of compensation, practical barriers, high workload demands, and weak feedback mechanisms, sustaining a gap between formal inclusion and demonstrable influence on decisions.

Conclusion
PPIE in cancer governance remains unevenly institutionalised, with gaps in formalisation, resourcing, and implementation across the policy cycle. Strengthening PPIE requires binding governance frameworks, sustainable funding and remuneration, and systematic integration across all stages of decision making. Investment in capacity building and the establishment of monitoring and feedback mechanisms are essential to ensure equitable, and accountable PPIE.