Embedding health literacy in cancer policy: insights from a participatory process in Romania

Abstract Background Cancer mortality in Romania has increased, particularly for lung, colorectal, and breast cancers, with rates exceeding the EU average. Low screening uptake and delayed diagnosis contribute to these trends. Health literacy is a key determinant of cancer care outcomes. Countries that integrate health literacy into policy often see broader improvements in cancer control. This study examines the process and challenges of co-creating cancer policy recommendations that meaningfully include health and cancer literacy in Romania. Methods A two-phase approach was used: (1) desk research (Dec 2022-Apr 2023) reviewed Romanian cancer policies, programs, and action plans to identify entry points for health literacy; (2) two stakeholder workshops: one local (May 2023) and one national (Nov 2023) that engaged oncology and public health experts to validate findings and co-develop policy options. Results Desk research revealed major gaps in addressing health literacy in Romanian oncology frameworks. Stakeholders identified key intervention areas, such as patient education, caregiver support, and navigation of services. Although health literacy was widely recognized as important, incorporating it into final policy recommendations proved difficult due to competing policy priorities, limited awareness, and institutional constraints. Of seven co-created policy recommendations, only three directly addressed health literacy: (1) national assessment of cancer literacy among patients and caregivers; (2) public-facing strategies to improve cancer literacy; and (3) enhancing organizational cancer literacy. Conclusions This study illustrates the systemic and practical challenges of embedding health literacy into cancer policy through co-creation. Findings call for stronger political and institutional commitment to make health literacy a foundation of equitable cancer prevention and care.