Key Message

5: Informal and formal spaces and processes both play key roles in participation. The two-way interactions between them enrich both.

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Informal spaces and processes take place outside legally or state defined mechanisms. They are wide ranging, including forums, drama, art, festivals, meals, peer-to-peer processes, literacy and skills-building activities, hearings, social media, campaigns and protests. They may be ad hoc and transient, but may also be organised, structured and sustained, and may build social networking and organisation. Informal spaces are more flexible, inclusive, more able to use the processes, places and tools described in the report that are accessible to communities, especially to reach and involve groups often excluded from formal processes. They can build the collective power and confidence for formal interactions. 

Formal mechanisms, such as health service or local government boards or committees at local level upwards, are constituted by laws or guidelines. They provide a means for joint community and service participation in dialogue, co-determination and oversight. This participation is more meaningful if community members are elected, inclusive of different social groups, if they co-decide or are informed on the procedural rules, and if the evidence and processes are accessible to and enable input from them. 

Participatory practice generally involves a two-way dynamic between a multiplicity of formal and informal mechanisms and processes, to build the dialogue, relationships and trust over time between communities and services.

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Building synergies between informal processes and formal institutionalised spaces for citizen participation in health in Brazil

Coelho VS, Calandrini A, Waisbich LT, CEBRAP, 2018

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Home to 12 million people, the municipality of São Paulo in Brazil has wide social inequalities, including in access to public services. Cidade Tiradentes, a sub-municipality, has a mix of formal and informal slum (favela) settlements with over 220,000 inhabitants. Its local inhabitants are amongst the poorest and most marginalised in the city, with high rates of unemployment, little access to social facilities, public services and public transport. Cidade Tiradentes residents have poorer health status than the city average, with common risks of early pregnancy, chronic conditions, infectious diseases and social violence. Its residents have formed social movements to raise public pressure for solutions to their problems. 

Brazil’s national public health sector, the Sistema Único de Saúde (SUS), is a public health system based on the constitutional right to health. Municipalities have the main responsibility for allocating resources and for basic health service provision. Primary care units, Unidade Básica de Saúde (UBS), are the main primary care level facilities and the entry to the SUS, with a key role in prevention, basic care, screening for specialised care and referral. A Family Health strategy engages citizens directly on health promotion and care through visits by multidisciplinary teams covering 1,000 families. The teams include a physician, a nurse, two nursing assistants, a dentist and six community health workers (CHWs), with the latter being intermediaries between the community and local services.

Citizen participation is a key feature of the SUS and mandated by law. It is implemented through participatory councils, with half the members elected by citizens and the other half representing government, health workers and service providers. Local councils at municipal level and local facility councils (LFCs) within SUS primary care facilities contribute to policies and plans in line with local population needs, although their participatory practices vary. Click here or on the middle photo to watch a video on the councils in Brazil.  As formal mechanisms for institutionalised participation the LFCs represent citizens, health workers and health managers.  

The LFCs in Cidade Tiradentes hold regular meetings, with a collectively agreed agenda. Although anyone can attend these meetings, only the elected councillors can vote. Decisions are usually made by consensus. While elections for councillors are always publicised and the results are made public, the turnout for these elections is often low, and few councillors come from highly marginalised groups.

Elected councillors may be included in short capacity building courses on citizens’ rights, SUS structure, financing rules and the policy process. Cidade Tiradentes also has a monthly meeting of a local health council for the whole sub-municipality. This meeting gathers representatives – councillors, health professionals and managers – from all primary care centres, with representatives of the municipality health secretary. Bringing the LFCs together appears to strengthen the confidence of their community members to make demands and common claims and to push for official responses.

Beyond councillors’ direct interaction with community members, communities have other ways of making input to the LFCs. They put suggestions in boxes at the facility, discuss health during council meetings and invite professionals or community members to input on agenda items, such as medicine shortfalls or social violence. For example, one local council gathered signatures from the whole community to officially request a solution for medicine shortages.

Community health workers (CHWs), as non-degreed health professionals, also contribute to this interface between communities and services. CHWs are local residents elected by the health team. They extend outreach services to the community, bringing those in need of care to the primary care unit, mediating communication between the health system and the population. For example, CHWs visit families monthly, developing a close relationship with them, collecting data on their health profile and discussing actions to improve their health. Regular meetings between CHWs and health workers and education programmes for CHWs enhance the community/service interaction. As one health worker stated: There are patients lost out there and we don’t know what is happening to them! If they do not come here, we'll never know ..... The community workers really help a lot!” From their perspective, community members see CHWs as channels through which to express their claims and have their voices heard.

Non-institutionalised forms of citizen participation in health complement these institutionalised forms and take up issues that the latter have failed to solve. These forms of participation may be conflictual, such as in protest, or they may be collaborative, such as in joint work with professionals.

The councillor role appears to be critical for how far more proactive strategies are pursued, how far the community is mobilised, and how effective the mediation is between communities and authorities. LFC councillor links with community members are built through their participation in various associations of community members, including church-related groups, women's social movements, associations supporting addicts and neighbourhood associations. At the same time, the councillors observe that these roles would be facilitated by greater involvement of facility senior management in council meetings, even though the same management sees the council as a key contributor to improved communication with the community.

The interplay between institutionalised and non-institutionalised forms of citizen participation and joint professional activities helps to create a zone of dialogue and mediation between two quite different realities and experiences. Non-institutionalised forms of participation play an important role in citizen participation in Cidade Tiradentes, as do the experience and capability of the elected councillors, their involvement in local politics and their links to social movements and local associations.

These participatory practices contributed in Cidade Tiradentes to various changes in the health system. They mobilised defence of a mental health service against closure; facilitated improved measures to tackle violence and to support service access for people with disabilities; and motivated actions to support pharmacists and access to medicines. The experience in Cidade Tiradentes shows how a two-way dynamic in participation - from the community to local health facilities through the LFCs as institutionalised forms and from facilities to the community through non-formal channels - provides spaces and entry points for citizen voice in the health system.

From a case study  by V. Coelho, A Calandrini, L Waisbich. Photos: Local health council meeting in Cidade Tiradentes © A Calandrini 2017 and Street demonstration against medicine distribution policy, São Paulo © A Calandrini 2017

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