ABSTRACT

This article analyzes the state of social participation in health in the Region of the Americas, framing it within the regional context and commitments assumed by the Member States of the Pan American Health Organization. It aims to provide regional input to the discussion of a resolution on social participation for universal health coverage, health, and well-being at the 77th World Health Assembly in 2024.

In the Americas, social participation has evolved from a utilitarian approach to a fundamental aspect of health system governance, enshrined within legal frameworks and recognized as a citizen’s right. Regional resolutions emphasize inclusive policies and intersectoral action to tackle health inequities, meanwhile the World Health Organization handbook on social participation underscores the need for inclusive governance mechanisms and addressing power imbalances.

Informed by Member States’ recommendations and scientific literature, the article emphasizes the importance of addressing power imbalances, strengthening legal frameworks, and enhancing capacities of governments and populations. It stresses adapting social participation mechanisms to diverse cultural contexts and ensuring meaningful community involvement in decision-making.

Finally, the article advocates for a comprehensive approach to social participation grounded in principles of equity, democracy, and human rights; and fundamentally as an essential component of the primary health care approach. It calls for integrating social participation into health system governance, policy dialogues, capacity-building, and evaluation to ensure effective participatory processes.

Keywords
Social participation; community participation; universal access to health care services; health governance; primary health care; Americas

RESUMEN

En este artículo se analiza el estado de la participación social en materia de salud en la Región de las Américas dentro del marco del contexto regional y los compromisos asumidos por los Estados Miembros de la Organización Panamericana de la Salud. El objetivo es proporcionar aportes regionales para las deliberaciones en torno a una resolución sobre la participación social para la cobertura universal de salud, la salud y el bienestar en la 77.^a Asamblea Mundial de la Salud en el 2024.

En la Región de las Américas, la participación social ha evolucionado de un enfoque utilitarista a ser considerada un aspecto fundamental de la gobernanza de los sistemas de salud, consagrado en los marcos jurídicos y reconocido como un derecho ciudadano. Las resoluciones regionales hacen hincapié en las políticas inclusivas y las medidas intersectoriales para abordar las inequidades en materia de salud, mientras que el manual de la Organización Mundial de la Salud sobre participación social destaca la necesidad de mecanismos de gobernanza inclusivos y el abordaje de los desequilibrios de poder.

Basándose en las recomendaciones de los Estados Miembros y la bibliografía científica, el artículo subraya la importancia de abordar los desequilibrios de poder, fortalecer los marcos jurídicos y mejorar las capacidades de los gobiernos y las poblaciones. Hace hincapié en adaptar los mecanismos de participación social a contextos culturales diversos y garantizar una participación trascendente de la comunidad en la toma de decisiones.

Por último, el artículo aboga por un enfoque integral de la participación social basado en principios de equidad, democracia y derechos humanos; y, fundamentalmente, como un componente esencial del enfoque de atención primaria de salud. Insta a integrar la participación social en la gobernanza del sistema de salud, los diálogos sobre las políticas, la creación de capacidad y la evaluación para garantizar procesos participativos eficaces.

Palabras clave
Participación social; participación de la comunidad; acceso universal a los servicios de salud; gobernanza; atención primaria de salud; Américas

RESUMO

Este artigo analisa a situação da participação social em saúde na Região das Américas tendo em conta o contexto regional e os compromissos assumidos pelos Estados Membros da Organização Pan-Americana da Saúde. O objetivo é oferecer contribuições regionais para a discussão de uma resolução sobre participação social para cobertura universal de saúde, saúde e bem-estar na 77ª Assembleia Mundial da Saúde, em 2024.

Na Região das Américas, a participação social evoluiu, deixando de ser uma abordagem utilitarista para se tornar um aspecto fundamental de governança do sistema de saúde, consagrada por marcos legais e reconhecida como um direito dos cidadãos. As resoluções regionais enfatizam políticas inclusivas e ações intersetoriais para combater iniquidades em saúde, e o manual da Organização Mundial da Saúde sobre participação social ressalta a necessidade de contar com mecanismos inclusivos de governança e abordar desequilíbrios de poder.

Com base nas recomendações dos Estados Membros e na literatura científica, o artigo destaca a importância de abordar desequilíbrios de poder, reforçar marcos legais e fortalecer as capacidades dos governos e das populações. Além disso, enfatiza a necessidade de adaptar mecanismos de participação social a diversos contextos culturais e assegurar um envolvimento significativo da comunidade na tomada de decisões.

Por fim, o artigo defende uma abordagem abrangente de participação social com base em princípios de equidade, democracia e direitos humanos e, fundamentalmente, como um componente essencial da abordagem de atenção primária em saúde. O artigo urge a integração da participação social na governança do sistema de saúde, em diálogos sobre políticas, no desenvolvimento de capacidades e na avaliação, a fim de assegurar processos participativos efetivos.

Palavras-chave
Participação social; participação da comunidade; acesso universal aos serviços de saúde; governança em saúde; atenção primária à saúde; América

Social participation in health, recognized as a key strategy since the Alma Ata declaration of 1978, has been reiterated in numerous global and regional resolutions, linked to the right to health. However, research indicates that its implementation has lagged and that the mere existence of social participation mechanisms is not in itself a sufficient guarantee for meaningful community involvement in health decision-making and governance (¹1. South American Institute of Government in Health, Union of South American Nations. Mechanisms of Social Participation in Health in South America. Rio de Janeiro: ISAGS-UNASUR; 2018.–³3. Mahmood Q, Muntaner C. Theoretical underpinnings of state institutionalisation of inclusion and struggles in collective health in Latin America. Glob Public Health. 2019;14(6–7):863–874. https://doi.org/10.1080/17441692.2018.1455886
https://doi.org/10.1080/17441692.2018.14... ). During the COVID-19 pandemic, many countries neglected to involve civil society and communities in emergency decision-making, resulting in decreased trust in health authorities and reduced adherence to preventive measures (⁴4. Rajan D, Koch K. The Health Democracy Deficit and COVID-19. Eurohealth. 2020;26(3):26–28. Available from: https://iris.who.int/handle/10665/338949
https://iris.who.int/handle/10665/338949... –⁶6. Torres I, López-Cevallos D. In the name of COVID-19: legitimizing the exclusion of community participation in Ecuador’s health policy. Health Promot Int. 2021;36(5):1324–1333. https://doi.org/10.1093/heapro/daaa139
https://doi.org/10.1093/heapro/daaa139... ).

In this context, a group of World Health Organization (WHO) Member States¹1By January 2024: Brazil, Colombia, Croatia, Ecuador, Finland, France, Guatemala, Norway, Qatar, Slovakia, Slovenia, Sri Lanka, Thailand, Tunisia, and United States of America. are seeking a stronger political commitment and proposing a resolution on social participation to the 77th World Health Assembly (WHA) (⁷7. World Health Organization. Social participation for universal health coverage, health and well-being. [Draft decision EB154/CONF./10]. 154th Session of the Executive Board. 22 January 2024. Geneva: WHO; 2024. Available from: https://apps.who.int/gb/ebwha/pdf_files/EB154/B154_CONF10-en.pdf
https://apps.who.int/gb/ebwha/pdf_files/... ). This article aims to inform the resolution discussion and its prospective implementation in the Americas by providing a critical perspective of the WHO handbook on social participation, and examining experiences, needs, and perspectives reflected in regional resolutions, policy documents, scientific literature, and insights collected from Member States during regional consultation processes and webinars organized by the Pan American Health Organization (PAHO) in 2021–2022.

A CRITICAL OVERVIEW OF THE WHO HANDBOOK ON SOCIAL PARTICIPATION

In 2021, WHO published a practical handbook on social participation in health, offering informed guidance to policymakers on fostering meaningful government engagement with populations, communities, and civil society (⁸8. World Health Organization. Voice, agency, empowerment: handbook on social participation for universal health coverage. Geneva: WHO; 2021. Available from: https://iris.who.int/handle/10665/342704
https://iris.who.int/handle/10665/342704... ). Beyond the positive aspects of the report, its prospective implementation in the Region of the Americas involves a series of adaptations and emphasis. The handbook highlights the importance of creating, strengthening, and sustaining participatory health governance mechanisms to ensure regular and institutionalized dialogue between governments and populations. However, in the region, there is a need to emphasize the sustainability and long-term continuity of these mechanisms.

Even if sustained participatory engagement over time is facilitated by legal frameworks, the required emphasis for the Americas lies on other elements mentioned in the handbook: communication channels, political prioritization, and capacity-strengthening. Legal frameworks will not be enough if there are no political prioritization and solid capacities both at the government and population levels. The WHO recommendation gets it right in highlighting the need to address power imbalances within participatory spaces, particularly by giving marginalized groups equal voice and legitimacy. This is particularly relevant for the context of the Americas and requires governments to consciously shape participatory formats while mainstreaming an intercultural approach to specifically integrate Indigenous and rural populations.

The handbook and the technical paper published in 2023 (⁹9. World Health Organization. Social participation for universal health coverage: technical paper. Geneva: WHO; 2023. Available from: https://iris.who.int/handle/10665/375276
https://iris.who.int/handle/10665/375276... ) effectively address the different tasks that policymakers face when bringing people’s voice into policymaking: creating an enabling environment, ensuring good representation, strengthening capacities of both government actors and populations, and translating participatory process outcomes into health policies to increase policy uptake and legitimacy.

PARTICULARITIES OF SOCIAL PARTICIPATION IN HEALTH IN THE AMERICAS

Some underlying factors condition the implementation of these global recommendations in the Americas. First, the region remains one of the most unequal in the world, and conditions of health inequality and inequity prove to be persistent and deepening in many countries. Structural dimensions of inequality intersect and reinforce each other, accumulating over time and generations (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... , ¹⁰10. Pan American Health Organization. Sustainable Health Agenda for the Americas 2018-2030: a call to action for health and well-being in the Region. Washington, D.C.: PAHO; 2017. Available from: https://iris.paho.org/handle/10665.2/49170
https://iris.paho.org/handle/10665.2/491... ). The COVID-19 pandemic further exacerbated existing inequalities, leading to worse health outcomes in lower-income, Indigenous, and Afro-descendant populations (¹¹11. Pan American Health Organization. Strategy for building resilient health systems and post-COVID-19 pandemic recovery to sustain and protect public health gains. Washington, D.C.: PAHO; 2022. Available from: https://iris.paho.org/handle/10665.2/55858
https://iris.paho.org/handle/10665.2/558... ). Therefore, to achieve equity, underlying social conditions need to be addressed, while transforming and strengthening health systems; and for this to happen, effective social participation and collaboration with other actors is needed (¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... ).

Second, social participation in the Americas has traditionally been viewed through a “utilitarian” lens, where it serves as a strategy to bring health services closer to the people, aiming to increase the uptake of public health services or support the development of community health posts through community contributions (⁵5. Bispo JP, Morais MB. Community participation in the fight against COVID-19: between utilitarianism and social justice. Cad Saude Publica. 2020;36(8):1–9. https://doi.org/10.1590/0102-311x00151620
https://doi.org/10.1590/0102-311x0015162... , ¹⁰10. Pan American Health Organization. Sustainable Health Agenda for the Americas 2018-2030: a call to action for health and well-being in the Region. Washington, D.C.: PAHO; 2017. Available from: https://iris.paho.org/handle/10665.2/49170
https://iris.paho.org/handle/10665.2/491... –¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ). However, over the past few decades, the concept of social participation has undergone a significant expansion (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Following the democratization of much of the continent in the late 1980s and 1990s, many countries enshrined the right to health in their legal frameworks, firmly embedding social participation within the framework of social justice and human rights and recognizing it as a key element of health system governance (¹⁵15. Pan American Health Organization. Strategy for Universal Access to Health and Universal Health Coverage [CD53/5, Rev. 2]. 53rd Directing Council, 66th Session of the Regional Committee of WHO for the Americas; 29 September–3 October 2014. Washington, D.C.: PAHO; 2014. Available from: https://iris.paho.org/handle/10665.2/28276
https://iris.paho.org/handle/10665.2/282... ). This evolution was supported by new democratic governments as well as emerging social movements and civil society organizations advocating for policies based on equity criteria and democratic rights (¹1. South American Institute of Government in Health, Union of South American Nations. Mechanisms of Social Participation in Health in South America. Rio de Janeiro: ISAGS-UNASUR; 2018.–³3. Mahmood Q, Muntaner C. Theoretical underpinnings of state institutionalisation of inclusion and struggles in collective health in Latin America. Glob Public Health. 2019;14(6–7):863–874. https://doi.org/10.1080/17441692.2018.1455886
https://doi.org/10.1080/17441692.2018.14... , ⁵5. Bispo JP, Morais MB. Community participation in the fight against COVID-19: between utilitarianism and social justice. Cad Saude Publica. 2020;36(8):1–9. https://doi.org/10.1590/0102-311x00151620
https://doi.org/10.1590/0102-311x0015162... ). Despite setbacks resulting from conservative governments imposing cuts to civil society and social movements’ engagement in specific countries recently, social participation remains considered a citizen’s right, enabling communities to control decisions related to their health, participate in health policy formulation and implementation, and exercise social control and oversight of health systems and authorities.

SOCIAL PARTICIPATION IN PAHO RESOLUTIONS AND POLICY PAPERS

The governance approach to social participation, as a vital part of a healthy democracy and the primary health care (PHC) approach, has been endorsed by PAHO Member States in several resolutions and policy reports (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... , ¹⁰10. Pan American Health Organization. Sustainable Health Agenda for the Americas 2018-2030: a call to action for health and well-being in the Region. Washington, D.C.: PAHO; 2017. Available from: https://iris.paho.org/handle/10665.2/49170
https://iris.paho.org/handle/10665.2/491... –¹⁵15. Pan American Health Organization. Strategy for Universal Access to Health and Universal Health Coverage [CD53/5, Rev. 2]. 53rd Directing Council, 66th Session of the Regional Committee of WHO for the Americas; 29 September–3 October 2014. Washington, D.C.: PAHO; 2014. Available from: https://iris.paho.org/handle/10665.2/28276
https://iris.paho.org/handle/10665.2/282... ) (Table 1). Social participation is defined by PAHO as the “collective actions through which civil society and the organized community intervene and directly influence the organization, social control, management, and oversight of health institutions and the health system as a whole” (¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... , ¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ). It is recognized as one of the 11 essential public health functions and as a transversal strategy that runs throughout the entire policy cycle (¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ). It has a proven positive effect on health system transformations and on increased transparency (¹⁵15. Pan American Health Organization. Strategy for Universal Access to Health and Universal Health Coverage [CD53/5, Rev. 2]. 53rd Directing Council, 66th Session of the Regional Committee of WHO for the Americas; 29 September–3 October 2014. Washington, D.C.: PAHO; 2014. Available from: https://iris.paho.org/handle/10665.2/28276
https://iris.paho.org/handle/10665.2/282... ).

PAHO resolutions confirm the right of all people to participate, to have an equal voice “regardless of the territory where they live, their ethnicity, gender, age, beliefs, social class, migration status, or disability status, paying special attention to groups in situations of vulnerability” (¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... ). The right to participation must be ensured through effective social participation mechanisms and tools that allow for collective and individual involvement in decision-making processes (¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... , ¹⁶16. Pan American Health Organization. Policy on Integrated Care for Improved Health Outcomes [CSP30/10]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-10-e-policy-integrated-care_0.pdf
https://www.paho.org/sites/default/files... ). By providing opportunities to participate at the local level, governments become more aware of people’s realities and differentiated needs, which cause inequities in health outcomes and in access to resources. Health systems that acknowledge this human diversity become more responsive and are more apt to guarantee equity and dignity (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... , ¹¹11. Pan American Health Organization. Strategy for building resilient health systems and post-COVID-19 pandemic recovery to sustain and protect public health gains. Washington, D.C.: PAHO; 2022. Available from: https://iris.paho.org/handle/10665.2/55858
https://iris.paho.org/handle/10665.2/558... –¹⁵15. Pan American Health Organization. Strategy for Universal Access to Health and Universal Health Coverage [CD53/5, Rev. 2]. 53rd Directing Council, 66th Session of the Regional Committee of WHO for the Americas; 29 September–3 October 2014. Washington, D.C.: PAHO; 2014. Available from: https://iris.paho.org/handle/10665.2/28276
https://iris.paho.org/handle/10665.2/282... ). Moreover, social participation is also necessary for effective intersectoral action and to address the social determinants of health (¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... , ¹⁵15. Pan American Health Organization. Strategy for Universal Access to Health and Universal Health Coverage [CD53/5, Rev. 2]. 53rd Directing Council, 66th Session of the Regional Committee of WHO for the Americas; 29 September–3 October 2014. Washington, D.C.: PAHO; 2014. Available from: https://iris.paho.org/handle/10665.2/28276
https://iris.paho.org/handle/10665.2/282... ).

The importance of addressing power relationships has also been emphasized in PAHO resolutions. All health system transformations will involve a renegotiation over the distribution of resources and power, and social participation provides an opportunity to the population to influence these processes (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... , ¹⁰10. Pan American Health Organization. Sustainable Health Agenda for the Americas 2018-2030: a call to action for health and well-being in the Region. Washington, D.C.: PAHO; 2017. Available from: https://iris.paho.org/handle/10665.2/49170
https://iris.paho.org/handle/10665.2/491... , ¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... , ¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ).

Several PAHO documents put forward a road map to strengthen and institutionalize social participation mechanisms in countries. First, social participation spaces should be protected by and institutionalized in legal frameworks, establishing criteria of representation, considering the diversity of social groups, and providing a role of social control (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... , ¹²12. Pan American Health Organization. Policy for recovering progress toward the Sustainable Development Goals with equity through action on the social determinants of health and intersectoral work [CSP30/8]. 30th Pan American Sanitary Conference, 74th Session of the Regional Committee of WHO for the Americas; 26–30 September 2022. Washington, D.C.: PAHO; 2022. Available from: https://www.paho.org/sites/default/files/csp30-8-e-policy-sustainable-development-goals_0.pdf
https://www.paho.org/sites/default/files... , ¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ). To this end, governments may need to create specific conditions to enable vulnerable groups to participate; for instance, by addressing barriers of access related to the physical environment, transportation, information, and technology (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... ). Another crucial element to achieve institutionalization is the provision of transparent and equitable financing mechanisms (¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ). Secondly, commercial and private interests must be regulated, through the mitigation of conflict of interest, to make sure often-strong voices do not interfere with values of equity and the right to health (²2. Pan American Health Organization. Universal Health in the 21st Century: 40 Years of Alma-Ata. Washington, D.C.: PAHO; 2019. https://doi.org/10.37774/9789275320778.
https://doi.org/10.37774/9789275320778... , ¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ). Finally, efforts must be made to avoid ineffective participation. Experiences from the past have shown that social participation efforts run the risk of being limited to ratifying decisions that were already made by the authorities (¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ).

RECOMMENDATIONS FROM PAHO MEMBER STATES AND SCIENTIFIC LITERATURE

Forty-four representatives from 19 countries were invited to discuss the challenges for the Region of the Americas in an online consultation meeting organized by PAHO. Prior to the meeting, 22 representatives from 16 Member States completed an online survey offering valuable inputs (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). PAHO also facilitated two online webinars to encourage countries to exchange their experiences, and a brief review of scientific literature was conducted as well. From this process, four main recommendations emerged:

Social participation as a modus operandi in the health sector

Social participation is thriving in the Americas, in many forms and despite its challenges. Countries’ experiences range from social participation as part of health promotion activities for addressing the social determinants of health, to an integral part of the governance of the health system. Member State representatives emphasized the importance of social participation as a modus operandi of the health sector, embedded in the way the sector functions in all its aspects. For many countries, social participation is a key strategy in their health model, based on integrated service delivery and on the PHC approach (¹⁷17. de M Pontes AL, Santos RV. Health reform and Indigenous health policy in Brazil: contexts, actors, and discourses. Health Policy Plan. 2020;35(Supplement_1):i107–i114. https://doi.org/10.1093/heapol/czaa098
https://doi.org/10.1093/heapol/czaa098... ).

Addressing power imbalances

In the region’s context of inequality, both government representatives and scientific literature emphasize addressing power imbalances as crucial. Dominance of well-off or powerful groups in participation forums poses a significant threat to genuine social participation (¹1. South American Institute of Government in Health, Union of South American Nations. Mechanisms of Social Participation in Health in South America. Rio de Janeiro: ISAGS-UNASUR; 2018., ³3. Mahmood Q, Muntaner C. Theoretical underpinnings of state institutionalisation of inclusion and struggles in collective health in Latin America. Glob Public Health. 2019;14(6–7):863–874. https://doi.org/10.1080/17441692.2018.1455886
https://doi.org/10.1080/17441692.2018.14... ). To ensure universal access to health, especially for vulnerable groups, decisions regarding health and needed services should include all population segments; and adapt to the differentiated needs, while promoting local choice and a sense of ownership (¹1. South American Institute of Government in Health, Union of South American Nations. Mechanisms of Social Participation in Health in South America. Rio de Janeiro: ISAGS-UNASUR; 2018., ¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... , ¹⁷17. de M Pontes AL, Santos RV. Health reform and Indigenous health policy in Brazil: contexts, actors, and discourses. Health Policy Plan. 2020;35(Supplement_1):i107–i114. https://doi.org/10.1093/heapol/czaa098
https://doi.org/10.1093/heapol/czaa098... ); bringing health services and decisions to the local level, closer to the population.

Intercultural approaches embedded in social participation processes, like those adopted in Brazil and the Plurinational State of Bolivia, facilitate diverse perspectives and resources, making health systems more accessible to Indigenous populations (¹⁷17. de M Pontes AL, Santos RV. Health reform and Indigenous health policy in Brazil: contexts, actors, and discourses. Health Policy Plan. 2020;35(Supplement_1):i107–i114. https://doi.org/10.1093/heapol/czaa098
https://doi.org/10.1093/heapol/czaa098... ). Acknowledging the economic costs of time-commitments required for social participation, along with language and information access barriers, is essential, particularly for poor or isolated communities as demonstrated in experiences in Guatemala and Peru (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Moreover, experiences from Mexico and Uruguay stress the importance of mitigating conflict of interest to prevent powerful groups from influencing policies contradicting health objectives (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.).

The need for solid legal frameworks, but also political prioritization

Most South American countries have institutionalized social participation mechanisms in national legal frameworks, with many constitutions expressly establishing community participation in health (¹1. South American Institute of Government in Health, Union of South American Nations. Mechanisms of Social Participation in Health in South America. Rio de Janeiro: ISAGS-UNASUR; 2018.). These legal frameworks have been essential for advancing social participation and sustaining it when the political landscape changes. However, experiences from various countries indicate that legal frameworks alone are insufficient. Many have not been fully implemented or have failed to achieve expected results (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Implementation often requires navigating state bureaucracy, necessitating commitment from government decision-makers at all levels to strengthen social participation and redistribute power (³3. Mahmood Q, Muntaner C. Theoretical underpinnings of state institutionalisation of inclusion and struggles in collective health in Latin America. Glob Public Health. 2019;14(6–7):863–874. https://doi.org/10.1080/17441692.2018.1455886
https://doi.org/10.1080/17441692.2018.14... ).

Additionally, careful attention must be given to the design of engagement mechanisms to avoid tokenistic participation or alignment solely with the government’s agenda. Changes in government can also pose challenges; for example, Brazil’s strong institutional base for social participation, as outlined in the 1988 Constitution, did not prevent marginalization of health councils during decision-making in response to COVID-19 (⁵5. Bispo JP, Morais MB. Community participation in the fight against COVID-19: between utilitarianism and social justice. Cad Saude Publica. 2020;36(8):1–9. https://doi.org/10.1590/0102-311x00151620
https://doi.org/10.1590/0102-311x0015162... ). Similar marginalization of community participation mechanisms during the pandemic occurred in Ecuador (⁶6. Torres I, López-Cevallos D. In the name of COVID-19: legitimizing the exclusion of community participation in Ecuador’s health policy. Health Promot Int. 2021;36(5):1324–1333. https://doi.org/10.1093/heapro/daaa139
https://doi.org/10.1093/heapro/daaa139... ) and numerous other countries (⁴4. Rajan D, Koch K. The Health Democracy Deficit and COVID-19. Eurohealth. 2020;26(3):26–28. Available from: https://iris.who.int/handle/10665/338949
https://iris.who.int/handle/10665/338949... ).

Capacities of both governments and the population must be strengthened

Literature and country experiences underscore the crucial role of health workers in facilitating community and social participation, bridging the gap between local political authorities and the broader state bureaucracy (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Member State representatives have emphasized the significance of this role, particularly concerning the participation of Indigenous communities, highlighting the need to enhance intercultural and linguistic capacities among health personnel.

Furthermore, the increasing bureaucratization and technification, coupled with a lack of policy uptake from social participation forums, can diminish community motivation and involvement (¹⁸18. Bispo JP, Serapioni M. Community participation: Lessons and challenges of the 30 years of health councils in Brazil. J Glob Health. 2021;11:03061. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005309/
https://www.ncbi.nlm.nih.gov/pmc/article... ). Calls have been made for investments in community capacities to increase awareness of rights, knowledge of health systems, and technical expertise (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Challenges stemming from inadequate sustainable funding for participation spaces and supervision of lower-level governments, along with the absence of clear central guidelines, have also been identified (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Countries stress the necessity of fostering a culture of participation within the health sector and territories, alongside investment in robust communication channels with their populations (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.).

DISCUSSION

There is considerable overlap between recommendations made by the WHO handbook and the technical paper, the commitments made by Member States in regional resolutions, and the experiences and challenges they face. However, there are some specific characteristics of the Americas that should be taken into consideration when implementing global recommendations.

Social participation is considered a crucial strategy for supporting health system transformations based on PHC, universal health, and equity in health. Listening to and involving the population through strong social participation mechanisms can not only increase coverage of public health measures but, even more importantly, make health services adapt to differentiated needs, to effectively address health access barriers and contribute to guaranteeing the right to health. Although the more utilitarian approach to social participation is still implemented in many countries, the perspective of social participation as a key part of the governance of the health system gains more traction in countries. Social participation mechanisms and institutions could also contribute to the development of a democratic public sphere in countries, expanding citizenship and democracy, provided they reshape power relations, enable social control, promote collective identities, facilitate the channeling of social demands, and integrate both representation and direct participation (¹⁹19. Fleury S. La expansión de la ciudadanía. In: Inclusión social y nuevas ciudadanías. Condiciones para la convivencia y seguridad democrática [Internet]. Bogotá: Pontificia Universidad Javeriana; 2003 [cited 2024 May 13]; p167–194. Available from: https://www.researchgate.net/publication/343614380_LA_EXPANSION_DE_LA_CIUDADANIA
https://www.researchgate.net/publication... ).

Given the significant inequalities and needs to adapt health services to the cultural context and characteristics of territories, the voices of minority groups need to be heard; particularly, the voices of Indigenous and Afro-descendant groups, as well as the voices of younger generations with their new forms and tools for digital activism. Consequently, there is a need to work on the design and format of social participation spaces to address existing power asymmetries.

Moreover, capacities of both governments and populations need to be strengthened. There is work to be done to move toward a true democratization of decision-making processes in health, even in countries with strong institutionalized social participation spaces, such as Brazil where the development of Local Health Councils remains the current challenge.

Finally, social participation plays a fundamental role in the PHC approach. Achieving universal access to health is not feasible without empowering individuals and communities. To this end, the transformation processes of health systems must decisively integrate community and social participation throughout the policy cycle and reform agenda.

The upcoming discussion at the 77th WHA and its future implementation process should consider these experiences and reflections from the Region of the Americas. Social participation in health continues to be emphasized in PAHO Governing Bodies, while the region demonstrates diverse social participation practices, and relevant initiatives toward developing solid legal frameworks and embedding social participation in health governance. Nevertheless, there is a need to establish capacities and systems to assess the landscape of social participation, including conducting situational analyses, stakeholder mapping, and implementing monitoring and evaluation of social participation processes (¹⁴14. Pan American Health Organization. Social participation in health. Internal report on regional consultation with PAHO Member States. Washington, D.C.: PAHO; 2022.). Expanding knowledge, visibility, and the exchange of experiences remains a challenge. While the WHO handbook could provide a foundation for these initiatives, experiences such as the PAHO/WHO Innovation Laboratories in Brazil (²⁰20. Kujawa H, Pinto RS, Leles FAG, Machado FV. Participação em saúde como elemento indissociável para o fortalecimento dos sistemas de atenção à saúde nas Américas. Rev Panam Salud Publica. 2023;47:e109. https://doi.org/10.26633/RPSP.2023.109
https://doi.org/10.26633/RPSP.2023.109... ) and the evaluation process of Essential Public Health Functions (¹³13. Pan American Health Organization. The Essential Public Health Functions in the Americas: A Renewal for the 21st Century. Conceptual Framework and Description. Washington, D.C.: PAHO; 2020. Available from: https://iris.paho.org/handle/10665.2/53124
https://iris.paho.org/handle/10665.2/531... ) could offer insights on this path.

Disclaimer.

Authors hold sole responsibility for the views expressed in the manuscript, which may not necessarily reflect the opinion or policy of the RPSP/PAJPH and/or the Pan American Health Organization (PAHO).

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