7: Community involvement in accessible processes for decision-making that link and lead to shared plans, actions and resources are central to meaningful participation.
Involvement in decision–making (co-determination) is central to meaningful social participation in health. It takes place in formal spaces, and is influenced by informal processes and interactions.
However it demands more than the presence of mechanisms. With the different interests and power involved, a range of further features facilitate social power in decision-making. These include: elected and inclusive community representatives who are involved in community processes, communicate with and draw feedback from communities; transparency on the procedures and principles that govern decision making, agreed with communities; processes that integrate socio-cultural features (language, literacy) in their methods; and shared goals and outcomes with measures, such as progress markers, to assess and review step-wise progress, with short-term ‘wins’ to build confidence. These measures are bolstered by linking decisions to resources, such as through certification, community grants, incentive funds and participatory budgeting. Community and services support is fostered when decisions are monitored, progress reported, and where there is wider social accountability, such through social audits with public hearings.
Building synergies between informal processes and formal institutionalised spaces for citizen participation in health in Brazil
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
Shared evidence and analysis between communities and local government in Quito, Ecuador to mobilise cross sectoral action in health
The Metropolitan District of Quito (DMQ) is the second most populated city in Ecuador. It has grown rapidly in recent decades, with a 2010 population of 2.2 million in 65 districts called parroquias, half of which are urban. While there are social differentials in Quito residents, they have a strong sense of belonging in their neighbourhoods.
A 2016 health diagnosis (Diagnóstico de Salud) observed a high burden of chronic conditions, including in young people. Rather than using a reactive biomedical model to address these problems, a Healthy Municipalities Program in Ecuador is investing in a proactive community-based and population health approach. This applies participatory analysis and action to improve the social determinants of health (SDH) and involves locally elected Comités Locales de Salud (CLS) with community representatives in health situation diagnosis and planning. This approach reflects Ecuador’s 2008 Constitution and legal framework that sets a holistic rights-based approach to social participation in health, linking health to the exercise of rights to water, food, education, culture, social security, healthy environments and other areas that sustain good living (buen vivir).
The Health Department of the Municipality of Quito has since 2016 led implementation of a Healthy Neighbourhoods - closing the gap in health inequality project. It started in Ponceano, Centro Histórico, and Chimbacalle districts, with a combined total of 130 000 people. These districts had poorer health status than others in Quito, but had capacities to support the work. The project integrates health into urban planning, local investment and local public policy, by promoting community-led initiatives.
The health department set up a technical committee of sectors contributing to create conditions health to support intersectoral action; and community health work teams at city and neighbourhood levels to bring local community voice to the processes.
From the side of the city, information on health and SDH is gathered and organised using the WHO Urban Health Equity Assessment and Response Tool, the Centers for Disease Control Healthy Communities program and the Ecuadorean Ministry of Public Health National Program for Healthy Municipalities. This information is used to engage with residents on their priorities in the different neighbourhoods, displaying health data and health determinants by district to make the information publicly accessible, including for informal neighbourhoods.
Residents carry out their own awareness raising and local ‘priority setting’ workshops held within settings in their neighbourhoods. To date neighbourhoods in parroquias Carcelen, Cotocollao, Comité del Pueblo, Chimbacalle, Tumbaco and Centro Historico are participating in the project. They identify their own priorities using participatory methods in these local workshops, and combine this with the evidence presented by DMQ to develop a road map with activities for the priorities in their own neighbourhood, and across neighbourhoods at city level.
The responses are organised in an intervention proposal that is presented to the mayor for approval and implementation. DMQ supports the capacity of residents to generate these intervention plans, or community health plans. As a pilot scheme, DMQ provides incentives such as specialized technical support, access to municipal communication channels (newspaper, radio, social media), and financing for community events to promote community involvement in the development and implementation of the plans. These incentives support community-led initiatives to improve health that benefit the wider community and aim to target and stimulate participation in those with higher health need.
Another approach is the community-led certification of ‘healthy spaces’. These cover fresh food markets, schools and parks within the municipality that meet certain criteria. The criteria are developed by the health department in collaboration with relevant sectors and with higher level health agencies. Municipal workers and community teams assesses food markets, parks, streets, schools and other public spaces and develop workplans for health improvements to address the gaps identified. The participatory action plans are implemented in co-ordination with relevant actors in these settings, with participatory review of how well they worked. The certification process aims to support the administrators and users of spaces like markets and schools to prioritise how best invest limited municipal resources to address those issues that preserve and promote health. It is expected that the initial effort around receiving a certification will forge a working relationship between the relevant actors in the improvement of these spaces, which will continue even after the space meets the criteria for certification. Over time, responsibility for certification of these healthy spaces will be fully delegated to the community health teams.
These processes build on Quito’s recognition of the role, orientation and competencies of the municipality in population health, the culture of collective work for common goals, and a supporting legal and policy framework. This has been critical for engaging other sectors and for the participatory processes to grow. It is a work in progress. However, there is evidence that the participatory processes for information gathering, analysis and priority setting in the community, combined with that collected by the services, together with the team approaches used can encourage co-operation across sectors and with the community to solve problems and to improve healthy public spaces.
These practices do face challenges in ensuring that the mechanisms adequately represent specific groups like youth, women or children. It has been difficult to encourage the work in areas where the culture of participation is weaker, to ensure that private actors, like companies, play their role and to encourage co-ordination across sectors. The expectations amongst community members may exceed the resources that DMQ has for the work. Co-ordination across sectors faces siloes that need to be broken to generate shared planning and action.
Those involved have found that this needs time and ways of building confidence through step by step progress. The information gathered helps to build participation, but can also build this confidence of the sectors and communities involved through the local evidence gathered.
From case study by R Loewenson, F Obando . Photos: Students explaining perceived health problems in their neighbourhoods. Quito © LJ Cárdenas 2016; Community assessing a market, Quito, © J Arevalo, 2018; Steering Committee LJ Jurado 2017