Towards Effective Citizen Participation in Cancer: Evidence from Civil Society Organizations in Chile
1
Centro de Salud Global Intercultural (CeSGI), Facultad de Medicina Clínica Alemana, Facultad de Psicología, Universidad del Desarrollo, Santiago, Chile
2
School of Public Health, LKS Faculty of Medicine, the University of Hong Kong, Hong Kong SAR, China
Popul. Med. 2026;8(Supplement Supplement 1):
ABSTRACT
INTRODUCTION:
Across the world, cancer poses a growing public health and societal challenge, with profound implications for health systems, social protection, and equity. Civil society organizations (CSOs) increasingly contribute to cancer prevention, patient support, advocacy, and accountability, yet evidence on how to structure effective and inclusive citizen participation remains limited. In Chile, where cancer has become a leading cause of death, understanding the contributions and needs of CSOs offers insights relevant to global efforts to strengthen participatory cancer governance. This study aimed to characterize cancer related CSOs nationwide and identify their roles, capacities, and perceived barriers to meaningful participation for the first time in the country.
METHODS:
A quantitative, descriptive, confidential, cross sectional study was conducted with civil society organizations engaged in cancer-related activities. Of 141 organizations contacted, 68 completed an online self-administered survey. The instrument was informed by previous qualitative research and expanded to incorporate literature-informed domains of interest.
RESULTS:
Respondents were predominantly women (82.4%). Most organizations operate at a small scale: 30.9% have fewer than 10 active members, and 41.2% have 10–25. Their work relies mainly on volunteers (67.6%), with only 30.9% employing paid staff. Core activities include cancer awareness and education (85.3%), patient and caregiver support (80.9%), and wellness initiatives (70.6%). Fewer organizations engage in public policy advocacy (26.5%) or research (17.6%). Open-ended responses highlight a strong desire for more meaningful, sustained, and institutionalized participation, while centralization and information asymmetry emerge as structural barriers.
CONCLUSIONS:
This study provides empirical evidence of an active yet resource-constrained civil society landscape playing a critical role in cancer support and advocacy. Strengthening technical capacity, reducing structural inequities such as centralization, and creating formal, responsive mechanisms for CSO engagement are essential steps toward more inclusive and equitable cancer governance. Not only in Chile but in diverse global contexts, to elevate citizen participation.
Across the world, cancer poses a growing public health and societal challenge, with profound implications for health systems, social protection, and equity. Civil society organizations (CSOs) increasingly contribute to cancer prevention, patient support, advocacy, and accountability, yet evidence on how to structure effective and inclusive citizen participation remains limited. In Chile, where cancer has become a leading cause of death, understanding the contributions and needs of CSOs offers insights relevant to global efforts to strengthen participatory cancer governance. This study aimed to characterize cancer related CSOs nationwide and identify their roles, capacities, and perceived barriers to meaningful participation for the first time in the country.
METHODS:
A quantitative, descriptive, confidential, cross sectional study was conducted with civil society organizations engaged in cancer-related activities. Of 141 organizations contacted, 68 completed an online self-administered survey. The instrument was informed by previous qualitative research and expanded to incorporate literature-informed domains of interest.
RESULTS:
Respondents were predominantly women (82.4%). Most organizations operate at a small scale: 30.9% have fewer than 10 active members, and 41.2% have 10–25. Their work relies mainly on volunteers (67.6%), with only 30.9% employing paid staff. Core activities include cancer awareness and education (85.3%), patient and caregiver support (80.9%), and wellness initiatives (70.6%). Fewer organizations engage in public policy advocacy (26.5%) or research (17.6%). Open-ended responses highlight a strong desire for more meaningful, sustained, and institutionalized participation, while centralization and information asymmetry emerge as structural barriers.
CONCLUSIONS:
This study provides empirical evidence of an active yet resource-constrained civil society landscape playing a critical role in cancer support and advocacy. Strengthening technical capacity, reducing structural inequities such as centralization, and creating formal, responsive mechanisms for CSO engagement are essential steps toward more inclusive and equitable cancer governance. Not only in Chile but in diverse global contexts, to elevate citizen participation.
| eISSN: | 2654-1459 |
We process personal data collected when visiting the website. The function of obtaining information about users and their behavior is carried out by voluntarily entered information in forms and saving cookies in end devices. Data, including cookies, are used to provide services, improve the user experience and to analyze the traffic in accordance with the Privacy policy. Data are also collected and processed by Google Analytics tool (more).
You can change cookies settings in your browser. Restricted use of cookies in the browser configuration may affect some functionalities of the website.
You can change cookies settings in your browser. Restricted use of cookies in the browser configuration may affect some functionalities of the website.
