5: Informal and formal spaces and processes both play key roles in participation. The two-way interactions between them enrich both.
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.
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
Building institutional mechanisms and capacities for participation in health and development in Pomurje region, Slovenia
The global financial crisis in 2008 hit Pomurje region Slovenia hard, with unemployment, falling levels of education and entrepreneurship and an exodus of youth and experienced workers. This added to other health challenges and high levels of inequality in health. In Slovenia regional development agencies co-ordinate stakeholders and municipalities plan and manage development and public services, including for healthcare. There are, however, no formal mechanisms for direct public participation in decisions on health policies. The public express their views through debates, parliamentary discussions, media, social protests, people’s initiatives and referendums, municipal representatives, patient agents, councils, websites and the media.
In 2001, Programme Mura initiated an investment in health approach to support the region’s economy and reduce health inequalities. The goal to identify and prioritise actions that would improve health equity led to agriculture, tourism, health and environment being prioritised. Click on the second photo adjacent to see a video that describes some of this work. While the institutional resources to deliver the interventions were already in place, the co-ordination mechanisms to make them happen were not. So an inter-ministerial working group was set up to co-ordinate, guide and support the work, a Regional Action Group (RAG) formed to enable wide participation of various groups and Programme Council Mura and the Centre for Health and Development (CHD) founded as technical agencies.
After mapping stakeholders a “RAG Mura” was established for cross-sectoral and stakeholder collaboration, involving state sectors, social organisations, associations of pensioners, people with disabilities, Roma community, civil society associations, long-term care organisations, local universities and media. Participants are delegated by their institutions, sign a letter of intent to work within the RAG and participate as full members in each of its four working groups. The decision-making body is the assembly, where each member has one vote. CHD staff provide a secretariat including to support co-ordination with between higher levels of the systems.
Using a Health Equity 2020 toolkit the priorities are identified as actions that support health equity and local economic and social development. Four key action areas were identified, that link participation in decision-making to participation in health and in economic activities:
- Health and healthy lifestyles, involving physical activity programmes, infrastructure, accessibility for vulnerable groups; healthy diet in kindergartens and schools; healthy ageing; mental health and social inclusion.
- Agriculture, involving healthy food; fruit and vegetables production, diverse quality food; local food supply, short food supply chains and social enterprises in quality food production and processing.
- Healthy tourism, involving hiking, biking, Nordic walking, active tourism (programmes, infrastructure); local healthy food and sustainable tourism in a ‘healthy tourist offer’.
- Environment, involving active mobility; water resources; renewable energy sources and efficient energy use.
Hence, for example, the local farm community now supplies schools and kindergartens in the area with locally grown produce, incentivised by public procurement systems that are oriented towards preferring healthier choice. In the healthy tourist offer programme, local foods are sold in tourist sites, generating jobs in food processing and gastronomic sectors, and also creating jobs in local construction and maintenance of an infrastructure that is used not only by tourists, but also by local inhabitants for healthier lifestyles. Various measures have also been implemented on healthy environments, ranging from building long- distance heating systems based on biomass, to efficient energy use (insulation of buildings to reduce energy consumption), use of renewable energy and promotion of active mobility and physical activity.
Results of National Health Monitoring Surveys carried out from 2001 to 2008 indicate positive changes in lifestyle in the region in terms of increased consumption of fresh fruits and vegetables, reduced use of animal fats in cooking, and reduced smoking and consumption of unhealthy foods such as fried foods, sweets, beverages, and salt, and an increase in recreation activities and exercise.
The RAG has provided a means for the continuity needed in participation, capacity building and action that these changes demand, as well as for engaging with formal decision making bodies. Decisions and outputs from four working groups (one on each of the four priority areas) and from the RAG assembly are developed into formal proposals by CHD with the relevant stakeholders, and presented to the Regional Development Agency and Regional Development Council (RDC). The RAG proposals have been integrated into programmes of the RDC and through CHD the RAG has been officially designated as the expert body for priorities in regional development for improvement of health and social inclusion.
These processes have been supported by a range of features. Consistent interactions have built awareness, trust and confidence. They draw attention to good practice, changing participants’ way of thinking, including about their own role in health co-production, and sustaining the work and partnership over time. To avoid wish lists and dispersed projects that may not have impact or be feasible, evidence on the conditions and health equity impacts is explained in an accessible way through The Health in the Municipality programme, contributing to decision-making, justifying the choices when presented to the RDC, and supporting the setting of shared goals. While funding is a key factor, the informal, flexible nature and methods of the RAG have enabled and sustained it. The work has also benefited from national incentives, such as green procurement.
The RAG Mura approach was facilitated by social cohesion and capacity building of all stakeholders in social determinants of health backed by evidence from assessments. The sustained commitment of CHD for its processes was key, and the support from institutions and policy actors at local, regional and national levels and from WHO reinforced the work. These sustained processes call for visible gains to boost confidence, and the recognition of RAG proposals in the regional development plan in the regional development council was important for this, as were the visible changes in the community.
From a case study by P Beznec, G Maučec, S Nemeš, D Nemeš Photos: Producing food in a sustainable way. © CHD 2014; video Health Inequalities - Social Determinants of Health Film (Slovenia) NSM Centre 2010: and Inaugural meeting of the RAG © CHD 2012