Barriers and opportunities for participation in health policy decision-making by civil society groups organized for cancer in Chile: a qualitative study

Abstract Background Social participation, a principle that has guided health reform processes globally, presents diverse barriers according to the political and social context, obstructing its effective exercise. This study examines the perceptions of various stakeholders regarding the barriers and opportunities for social participation in decision-making processes within Chile’s National Cancer Plan and Law framework. Methods A qualitative multiple-case study design (cases: politicians, academics, decision-makers, organisations) was employed. A total of 28 semi-structured online interviews were conducted with stakeholders involved in the planning and implementation of the National Cancer Plan and Law, as well as with its beneficiaries. Thematic analysis was carried out through the analytical framework method, a systematic and flexible approach to analysing qualitative data. Approved by the Scientific Ethics Committee of the Universidad del Desarrollo, Chile. Results The main perceived barriers were classified into four areas: (a) disarticulation of civil society organisations, (b) lack of validation of organisations in decision-making processes, (c) lack of access to information and (d) lack of tools for the professionalisation of organisations. Opportunities for action are proposed that involve joint actions from all actors in a paradigm shift exercise on social participation in health, and the degree of involvement that all stakeholders should have to achieve more significant equity in participation. Conclusions The results suggest that persistent barriers to effective participation exist, primarily due to power imbalances and the dominance of biomedical perspectives. The findings emphasize the importance of authorities and decision-makers acknowledging the value of knowledge from civil society to encourage collaborative and sustained work that transcends individual leaders and governments.