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The role of civil society and community in health policy-making


The concepts underlying public health policy have been evolving, with a basic shift in paradigm away from policies and action focused on individual behavior modification toward other policies that address the environment in which people live, work, and socialize, thus facilitating decision-making in matters related to health. For over three decades, the United Nations has been issuing declarations that promote civil society and community involvement. Nonetheless, while citizen participation has intensified, in many cases it still does not live up to the spirit of those declarations. This section presents concrete examples of national, regional, and global accomplishments in this area. Future efforts should lead to a more inclusive society in which the voices of all sectors can be heard. This will require an increase in the transparency of processes, information, and financing mechanisms and in the openness of governments to facilitating this involvement. PAHO collaboration will be needed in this process and in the defense of public policies against the business interests of certain stakeholders in the private sector.


For historical and political reasons, the definition, concept, and types of organization and activities of civil society have been changing (). Civil society can be classified in a number of ways: by its constituents, by its relations with the State, by the goals that drive it, by the approaches it takes, etc. (). In the broader sense, civil society can be defined as everything outside the formal State apparatus—a definition that includes groups with very different interests, such as seemingly independent front groups created to surreptitiously defend third-party interests (). For the purposes of this document, however, the term “civil society” will refer to groups outside the government created to promote public health and the general good.

We understand “community” as a specific group of people who usually live in a particular geographic area and have the same values, mores, and culture as well as a social structure that reflects the type of relations that the group has forged over time. The members of a community acquire their personal and social identity by sharing the beliefs, values, and mores that the community has embraced in the past but could change in the future. Community members are conscious of their group identity and share common needs and a commitment to meet them (). Community health, however, is more than the sum of the health of the people in a community. Influenced by many factors, community health offers a context for understanding how the health–disease process is expressed. Its focus shifts from curative care to the broader concept of well-being, and understanding this requires consideration of the interplay among the social determinants of health ().

The purpose of public health policies is to guarantee the population’s right to health by promoting healthy individual behaviors and creating an environment that fosters them. For example, a public policy aimed at reducing the risk factors for noncommunicable diseases (NCDs) should facilitate access to healthy products (e.g., by ensuring that schools do not provide or sell ultra-processed products or sugary beverages) and discourage the consumption of harmful products (e.g., by raising the price of tobacco products and alcoholic beverages through taxation). In other areas, such as controlling the epidemic of human immunodeficiency virus (HIV), the policy should create an environment that eliminates stigma and discrimination against people with HIV and promotes respect for human rights as key to facilitating access to HIV testing and treatment services.

Civil society and community involvement in public health policy-making: from Alma-Ata to the 2030 Agenda for Sustainable Development

The importance of civil society and community involvement in the definition and design of health policies has been recognized in many international documents, some of which were issued more than three decades ago-for example, the Declaration of Alma-Ata on primary health care in 1978 () and the Ottawa Charter in 1986 (). These documents reaffirm that health is a basic human right and underscore the importance of individual and community involvement in the formulation of health policies, stating that the people have the right and duty to participate individually and collectively in the planning and delivery of their health care ().

In 2007, the United Nations Declaration on the Rights of Indigenous Peoples ensured that “Ways and means of ensuring participation of indigenous peoples on issues affecting them shall be established” (). Several more recent documents, such as the Adelaide Statement on Health in All Policies of 2010 () and the Rio Political Declaration on Social Determinants of Health of 2011 (), reinforce these concepts and point to the need for a new “social contract” involving government, civil society, and the private sector.

The 2030 Agenda for Sustainable Development revisits the issue, observing that the UN Charter’s protagonists are the peoples of the world and that, on this occasion, it is again “we the people” who are embarking on the road toward achieving the goals of the 2030 Agenda. This journey “will involve Governments as well as Parliaments, the UN system and other international institutions, local authorities, indigenous peoples, civil society, business and the private sector, the scientific and academic community – and all people” ().

These declarations and commitments notwithstanding, the old health paradigm of curative medical care focused on disease still prevails—a paradigm in which people are merely passive beneficiaries of treatments or public health measures designed and executed by health specialists and planners () — while the importance of the social, economic, cultural, and environmental determinants of health is either ignored or minimized. In other words, despite the Region’s countless experiences with community and civil society involvement in health policy-making in recent decades, some of which will be described further on, it is currently acknowledged that the majority of these experiences have not reflected the spirit of Alma-Ata. That is, while these experiences involve the population in the execution of measures, they do not do so in the planning and design of policies, programs, and strategies — a shortcoming that persists in the majority of cases and countries.

Civil society and community: their role in public policy-making

Although achieving changes in lifestyles unquestionably requires people’s active participation and commitment, it also calls for changing the environment in which they live. This is fundamental. As stated earlier, a well-conceived public health policy does not discourage healthy behaviors but, rather, facilitates them. Within this framework, both civil society and the community have an important role in promoting and demanding that health policies create a social, economic, and environmental context that guarantees people’s right to health. While the degree of individual, community, and government responsibility for the protection and exercise of the right to health is still a matter of debate, there is no doubt that the three levels are complementary and that none of them in itself can solve the complex health problems confronting modern societies.

Civil society can play several roles in the policy-making cycle (Figure 1) through its interaction with the public and private sector. One of civil society’s basic functions is to give a voice to vulnerable populations and communities who are utterly invisible for policy-making purposes. Since scientific knowledge about a health problem or its determinants can never substitute for the experience of the people living with the problem, it is essential that policy- and decision-making bodies be genuinely democratic ((em)demos(/em) = the people; (em)kratos(/em) = authority to decide) to ensure that policies provide solutions to problems that only people in situations of vulnerability can see and feel. This is the case for social organizations created and structured around specific problems — for example, organizations of people living with HIV; associations of patients with chronic diseases; lesbian, gay, bisexual, transgender (LGBT) organizations; and tobacco control or consumer protection associations, to name but a few — engaged in an arduous struggle to exercise rights that have been denied them or to promote rules and regulations that recognize their situation or conditions that jeopardize their health and quality of life.

Figure 1. Key components of the policy-making cycle

Source: Adapted from Court J, Mendizabal E, Osborne D, Young J. Policy engagement. How civil society can be more effective. London: Overseas Development Institute; 2006.

Through different mechanisms, social movements and civil society organizations have slowly taken a role in generating reforms and change () that break with the status quo and promote development policies and models based on the principle of living a decent life (known as sumak kawsay among some indigenous peoples of Latin America) and the common good. It should be noted, however, that according to Arnstein’s ladder of citizen participation (Figure 2), many of the experiences of the past 30 years can be classified in effect as nonparticipation or tokenism, especially when these processes have been promoted by government agencies or even nongovernmental organizations that execute projects with public or donor funds—in other words, when this participation is not a victory scored by the social organizations but a concession from the power structures ().

Figure 2. Arnstein’s levels of participation

Source: Adapted from Lofland J. Social movement organizations: guide to research on insurgent realities. New Brunswick: Transaction Publishers; 1996.

The levels at which participation takes place are usually a source of tension and confrontation with the power structure. It is therefore necessary, on the one hand, for civil society and the community to increase their participation, and on the other hand, for governments to be more open to participation by broadening the relevant entities and helping them ensure that this happens. Nevertheless, for an empowered civil society to exist, it must also have sustainable financing mechanisms that will enable it to carry out its activities. In an era of budget cuts, financial uncertainty is a major problem that must be solved, bearing in mind that the need to compete for increasingly limited resources often creates divisions and undercuts the efficiency and effectiveness of the activities ().

Some important factors in civil society relations with the private sector must be considered. While there are legitimate ways of interacting to promote the common good or make the sector take responsibility for its actions, potential conflicts of interest, both real and perceived, should be carefully looked at when considering associations of this type. Furthermore, particularly in the case of NCDs and their risk factors, there are stakeholders motivated by private business interests, and one of their tactics is to create, finance, and control nongovernmental organizations (actually front groups) to lobby public policymakers and distort policies to favor corporate products, practices, and policies that adversely affect public health. These front groups compromise social participation and democratic decision-making to the extent that they supplant genuine civil society representatives who defend the public interest and common good ().

Finally, it is important to underscore the key role of civil society and the community in social monitoring and accountability mechanisms related to state and private sector performance (). Civil society and community monitoring is essential for preventing commitments and action from being dissociated from the public interest, diverted from public health, or delayed, weakened, or distorted.

Vertical accountability mechanisms permit direct civil society and community advocacy at different stages of the policy-making cycle and in different democratic bodies and processes that are theirs by right. These mechanisms, independently spearheaded by civil society, contribute to monitoring and oversight of these processes and expose noncompliance and omissions. Sanctions are one of the elements critical to ensuring that mechanisms for accountability and compliance with commitments and action are effective. Although civil society cannot impose financial or administrative sanctions, it can report noncompliance and demand that the authorities do something about it. It can use its networks to impose social sanctions, exposing poor government performance or corporate noncompliance with the law and opposition to public health.

Civil society and community: successful experiences

Clear examples of successful civil society involvement in health policy- and decision making can be found both worldwide and in the Region of the Americas. Some of these are described below (Boxes 1-4).

Box 1. Community involvement in the response to HIV

In the Declaration of Commitment on HIV/AIDS of 2001, 189 UN Member States endorsed the principle of greater involvement by people living with HIV (GIPA). This principle was unanimously endorsed once again in the Political Declaration on HIV/AIDS of 2006. People living with HIV can participate at different levels of policy-making and planning, program design and implementation, advocacy and support for treatment, and other health services. Civil society groups in the Region of the Americas participate in bodies such as community advisory boards, national AIDS councils, the Global Fund’s Board of Directors, the UNAIDS Programme Coordinating Board, and the PAHO Technical Advisory Committee. Moreover, in HIV services, some countries have introduced peer support furnished by people living with the infection. The challenge for the Region and other parts of the world is the sustainability of community and civil society support, primarily due to financial constraints. In the context of withdrawal from the Global Fund, the principal civil society donor for HIV-related issues in the Region, the sustainability of civil society participation is cause for concern. Although there are some funding initiatives (in Mexico and Brazil, for example), a rigorous evaluation of their success or of feasible funding alternatives is lacking, more with respect to political advocacy than service delivery.
UNAIDS. Policy brief. The greater involvement of people living with HIV (GIPA). April 2007.
Call to Action: Second Latin American and Caribbean Forum on the Continuum of HIV Care: “Enhancing Combination HIV Prevention to Strengthen the Continuum of Prevention and Care.” Rio de Janeiro, Brazil, 18-20 August 2015.

Box 2. Case study: Colombia. The role of civil society role in the implementation of grounds for legal abortion in Colombia

Until 2006, Colombia was one of the few countries in the world in which all abortion, without exceptions, was considered a crime, despite the contribution of unsafe abortion to maternal mortality and morbidity. This changed with Judgment C-355 of the Constitutional Court of Colombia, which decriminalized abortion in three cases: (i) when continuing the pregnancy threatens a woman’s life or health; (ii) when there is a serious fetal malformation; and (iii) when the pregnancy is the result of carnal abuse or rape.

Civil society efforts to guarantee the exercise of this right through the judgment’s enforcement have been essential, with organizations such as La Mesa por la Vida y la Salud de las Mujeres helping to ensure that the Court’s ruling is enforced. Two main activities have led to an increase in the delivery of timely and safe abortion services: (i) consensus-building for a comprehensive interpretation of the grounds for legal abortion, based on the human rights framework, and (ii) monitoring of the cases of women who encounter barriers to obtaining services. As a result of the “consensus on health grounds,” for example, more than 99% of legal abortions performed in 2015 in two of the main facilities that provide reproductive health services in the country are for health reasons, as defined by WHO.

It should be emphasized that La Mesa has not acted in isolation; on the contrary, its efforts have helped improve State responses through new regulations, the preparation of training content, and responses to critical issues through technical inputs.

Finally, monitoring the cases of women who encounter barriers has been essential for guaranteeing the accountability promoted by La Mesa. On the one hand, it has exposed barriers so that the State can find solutions (for example, by training providers), and on the other hand, it has been used to spur legal action, through new judgments handed down by the Court, to clarify the scope of legal abortion in Colombia and guarantee the change achieved in 2006.

Source: La Mesa por la Vida y la Salud de las Mujeres. Las causales de la Ley y la causa de las mujeres. La implementación del aborto legal en Colombia. 10 años profundizando la democracia (Coordinator-General Ana Cristina González Vélez). Offprint published in El Espectador and digital document. Bogotá, May 2016.

Box 3. Case study: Brazil. National Board of Nutrition and Food Security

The history of Brazil is marked by growing access to democratic policy- and decision-making bodies. Enshrined in the Federal Constitution, social participation and control have also become a basic principle of policies and systems related to health and food and nutrition security, as well as other social policies. Several mechanisms have been established to facilitate civil society involvement in policy-making and the monitoring of policy implementation.

Councils in the three branches of the federative system (national, state, and municipal) have institutionalized civil society involvement in the drafting of health and nutrition and food security policies and the monitoring of their implementation. For example, the National Food and Nutrition Security Council must not only have a majority of civil society representatives (2/3 versus 1/3 government representatives) but must guarantee seats for traditional populations, such as indigenous peoples and quilombola groups, and it must be chaired by a representative of civil society. This Council advises the Executive Office of the President of the Republic on nutrition and food security matters, in addition to discussing, reviewing, and (re)orienting political priorities and the national food and nutrition security system to pressure the State to fulfill its obligation to guarantee the exercise of the human right to adequate and healthy food.

Source: Swinburn B, et al. Strengthening of accountability systems to create healthy food environments and reduce global obesity. The Lancet 2015;385(9986):2534–2545.

Box 4. The role of civil society in the formulation and application of the WHO Framework Convention on Tobacco Control

The global nature of the tobacco control problem led WHO to develop a solution that was also global: the WHO Framework Convention on Tobacco Control (FCTC). Civil society became involved even before the start of formal discussions, when WHO held two days of public hearings on the subject. In 1999, given the need for a global approach, the Framework Convention Alliance for Tobacco Control (FCA), an umbrella organization with hundreds of partner organizations worldwide, commenced operations. Although the FTCT negotiations involved meetings of government representatives, civil society participated in all of the meetings and had several roles, which included pressuring governments to support the best measures, providing information on best practices, and publicly divulging the names of countries whose positions were aligned with the interests of the tobacco industry. After the FTCE’s adoption by the World Health Assembly, civil society played a key role in defending the ultimate goal of obtaining the 40 ratifications needed for the Convention’s entry into force in February 2005.

Civil society efforts have continued without interruption to ensure that FCTC mandates are observed in all national legislation. In the Americas, civil society has been essential for advancing tobacco control and has been a strategic partner of PAHO in the Region.

In addition to providing technical support in several areas, the various organizations have remained vigilant, pressuring governments to meet their commitments and issuing public statements when they have not; these organizations have also publicized attempts at interference by the tobacco industry and those who defend its interests.

Mamudu HM, Glantz SA. Civil society and the negotiation of the Framework Convention on Tobacco Control. Global Public Health 2009;4(2):150–168.
Marcet Champagne B, Sebrié E, Schoj V. The role of organized civil society in tobacco control in Latin America and the Caribbean. Salud Pública de México 2010;52(Supplement 2).

Unfortunately, despite the significance of the preceding examples in terms of the enormous influence that civil society can have on the implementation and, especially, the enforcement, of public policies, certain factors can thwart or conspire against this influence. Some of them are related to civil society itself, as in cases where civil society is not well organized or when internal struggles for visibility and funding arise. Others are related to elements such as a lack of political will and interference by special interest groups. A glaring example of this is the fact that 12 years after the FCTC’s entry into force in the Region of the Americas, 30 countries are Parties to the Convention but 11 of them have yet to implement any of its measures at the highest implementation level ().

The role of PAHO

Several documents issued by the Governing Bodies of PAHO support civil society and community involvement, among them the Plan of Action on Health in All Policies (), approved in 2014. This Plan aims at improving health and promoting well-being through synergistic integration of the concepts of health promotion, social determinants of health, and human rights. The evaluation of health implications in policy-making is the basis for “health in all policies.” Community involvement is essential for raising awareness about the need for this evaluation and enlisting support for it—and this, in fact, is one of the objectives of the Plan.

That same year saw the approval of the Strategy for Universal Access to Health and Universal Health Coverage, which calls for all people and communities to have access, without any kind of discrimination, to comprehensive, appropriate, and timely quality health services, as well as to safe, effective, and affordable quality medicines, without exposing users, especially groups in conditions of vulnerability, to financial difficulties (). To this end, the Member States are requested to establish formal mechanisms for participation and dialogue to promote inclusive policies and implement plans, programs, and projects that will facilitate individual and community empowerment (). In its technical cooperation with the Member States, PAHO engages with civil society and facilitates coordination between State and non-State actors, often in its capacity as an entity for bringing the different stakeholders together.

Given the complexity of the current global situation—while recognizing the multiple agents that intervene in health policy decisions and bearing in mind the need to protect public health from conflicts of interest—WHO has devised a framework for collaborating with non-State agents that includes nongovernmental organizations, private sector entities, charitable foundations, and academic institutions (). This framework is an instrument for identifying risks and benefits while protecting and preserving the integrity and reputation of WHO and its public health mandates; it will also determine PAHO’s future relationship with these agents.


The 2030 Agenda for Sustainable Development is an action plan “for people, planet, and prosperity.” With regard to people, the Agenda states that its objectives are to end poverty and hunger and to ensure that all human beings can fulfill their potential in dignity and equality and in a healthy environment. It furthermore recognizes the need for a global partnership among governments, the private sector, civil society, and the United Nations that supports achievement of the objectives and goals.

Health is one of the key factors enabling individuals and populations to reach their full potential. This is recognized in Sustainable Development Goal (SDG) 3: “Ensure health and well-being for all, at every stage of life.” At the same time, it is important to remember the integrated and indivisible nature of all the goals and their related targets to guarantee the future of humanity and the planet.

The way forward should lead to a more inclusive society in which the voices of all sectors can be heard. This will require a civil society that is more empowered and aware of its responsibility in decision-making, in addition to transparent and equitable funding mechanisms that are free of conflicts of interest. Governments, in turn, should guarantee a place for civil society and communities in discussions and decisions on content and budgets. More transparent processes and public information are essential for the population to make decisions based on reality. PAHO’s role will be to urge governments to promote participatory bodies, provide them with the necessary technical assistance, and ensure due diligence in interactions with the non-State sector to protect public policies from the business interests of certain stakeholders in the private sector.


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