Participation can be seen as an approach to social action, as well as a practice or action in itself. In the experience of PHM, participation can be part of several aspects of the life of social movement including needs assessment, capacity building, planning and delivering action, and evaluation.
Participation in health can be loosely defined as the involvement of people in communities to identify their health needs and devise solutions to these needs. Participation is voluntary, people cannot be forced to participate, but their participation is crucial. The World Health Organisation is clear that more real participation in health systems leads to better health results.
Governments and local authorities can, but often do not, create the necessary space that allows people to truly participate. Social movements like PHM are about ensuring that communities have decision-making power also through demanding and acting in this space.
Participation can range from people having no ultimate power, to being given token access to participate (consultation), or to really exert some power as equal partners or, best of all, to achieve ultimate people’s control. Consultation may be part of, but cannot be equated with participation. Usually those who consult already have the power to decide what to do with the information gathered, perhaps even ignoring the opinions of those who are consulted. Participation means people take an active part in a process, activity or event, they are not just bystanders or yes-sayers, but act as key players with voice and influence to decide the direction and content of any given action.
Joint health needs identification, assessment and prioritization
This is where PHM members have expressed their individual and collective opinions about the problems they face and the priority needs they see. They have negotiated and demanded from authorities the improvements they deem indispensable, either by themselves or together with selected partners with whom they have collaborated for specific health improvements.
For example, in Canada, motivated health professionals formed a group known as Health Providers Against Poverty as a way to address issues of common health concern. Following their outreach, people from poor social groups and neighborhoods joined the cause, because the issues discussed by the members of the group reflected their own concerns.
In Brazil, eliciting participation at community level was successful because it formally recognised the struggles of previously “invisible” people. The communities were thus formally recognised and acknowledged as citizens and as full claim holders of the right to health care. This promoted inclusiveness from the very beginning. It encouraged, motivated and empowered people to participate in a process for change that increased solidarity. It engaged them in a respectful manner, starting with acknowledging their struggle and their commonly perceived problems to then assess priorities. This example teaches us some key practices relevant for participation, namely that:
- The action was centred on the values of respect around water and spirituality. This focus made sense to the community and broadened the scope of their identified needs and the identification of solutions to address them. It also allowed a positive dialogue that led to understanding and trust between public institutions and the community, resulting in the registration of people and their subsequent recognition as equal legal and political citizens who can and do demand protection from the law.
- Emphasis was placed on forging partnerships and relationship building, i.e. they particularly valued the importance of individual interactions (and friendships). This is crucial, to build not only needed support, but also solidarity to reinforce bottom-up change.
Participation in health often demands new forms of progressive action and education. These help to develop a widely shared strategy pointing towards effective change that improves people’s wellbeing. It is thus not only about using participation to critique and denounce the status quo, but also promoting a new set-up, one with a more empowering attitude towards health, offering truly viable alternative actions. Whenever they can, PHM members strive to be proactive, not merely reactive. For them, it matters to challenge the dominant agenda and to redefine the strategies that provide more equitable and participatory health care and also combat preventable ill-health and malnutrition by addressing its national and global structural determinants.
Jointly building capacity, forging partnerships and adding new knowledge
Sometimes, PHM members have needed new knowledge or a new set of skills to help them deal with their prioritised health needs. Broadening participation is a great way of doing so. Gaining new skills or knowledge has involved formal and informal learning from others. This can happen through exchange learning, attending workshops and/or reading new ad-hoc materials. Experts have been invited to come and interact with the community, teaching as well as learning from them. Building capacities enhances understanding and opens new ways to address priority problems. For this, communication and advocacy has helped to engage PHM rights holders with service providers and specific duty bearers.
There are several ways in which communities can participate in building their capacities for participation in health. In Tanzania for example, PHM members used social media, emailing and whatsapp to bring-in and train new activists. They then engaged in a popular education campaign to hold the national health system to account. The ultimate aim was to build a culture of health advocacy.
In El Salvador, the experience of the foundation of the National Health forum (FNS) teaches us some additional key practices relevant for participation, namely that:
- We need not only to reflect on new institutional ways of supporting grassroots initiatives, but also need to become proactive in organizing them and then helping generate new forms of knowledge and new practices of local democracy and local government.
- We need to move away from top-down practices involving imposed acceptance and, instead, persistently move into consensus-building practices involving legitimate rights holders’ discussion and approval.
- We need to help define a new type of collective rather than individual identity and community responsibility.
- We need to help legitimize and enforce all UN-sanctioned people’s rights.
Jointly planning for action and increasing negotiation and bargaining capacity
There is no single way of planning for participation. PHM circles have used different approaches based on their specific country contexts. They have variously engaged in formulating goals and objectives considered critical for their plans of action. It is at this stage that together they arrived at consensus on priority health problems so as to plan the best and most feasible solutions to address the problems at hand. When planning for action, members identify roles for everyone who is involved, including those that may not have been participating in planning meetings, but will be interested in engaging.
The experience of Vermont (USA) teaches us yet other key practices relevant for participation, namely that:
- We need to increase the negotiation and bargaining capacity of vulnerable groups we work with so they can stake their claims to the respective duty bearers (empowerment and mobilization are part of this).
- We need to aim at overcoming constraining local, formal and informal policies and political structures as needed.
- We need to concentrate on changing the local generational dynamics when required (actively involving the youth), and especially on changing the role of marginalised population groups, including women, in overall development.
Jointly acting on health – meaningful participation at community level
Commitments need to be sought from everyone to begin doing what was agreed. This includes management, operation and support activities for the plan.
In the case of Vermont (USA), grassroots organizing was specifically based on applying the human rights framework. For other country circles, the approach for meaningful participation has been different.
In Nicaragua, for example, participation revolved around organizing and carrying out actions of resistance, starting with a semester long school strike including protest marches. This was used as an awareness building step (also using door-to-door visits, community radio and videos as means for the students to get organized). Early on, these students learned the importance of being connected with outside organizations, as well as finding the right media outlets to publicize their resistance. It must be pointed out that the movement has been guided by the ideas behind peaceful resistance.
Relatedly, colleagues in Australia progressively built a broad-based alliance of civil society organizations to address the social, economic, and political causes of ill-health (not just working within the health sector).
Jointly reflecting on past experiences to inform a planning and acting on health
It is indispensable to track what the agreed plan has committed members to do. This way we can draw on the lessons learned and make sure all challenges are addressed in the preparation of the ensuing activities. In this perspective, monitoring and evaluation is an integral part of participation through action.
For instance, in Scotland, the PHM circle reflected on their previous work and identified key health issues. Thereafter, they generated a consensus to build a People’s Movement for Health Equity. The process eventually led to holding an open health assembly in which participants called for concrete proposals for collective action based on a collective effort to assess past experience. Demands were circulated to existing PHM mailing lists, soliciting inputs from the whole of PHM. This ensured that each demand was finally endorsed by community support. This led to PHM Scotland developing a Scottish People’s Health Manifesto through an approach combining participatory action-research and proactive public health advocacy. Such decisions did not just happen, they came about as a result of reflecting on what worked before and what did not in light of strengths and weaknesses. Understanding strengths and weaknesses helps to critically assess what works to further strengthen the most important elements and turn the weaknesses into strengths. The process was mobilizing in that it also facilitated the collaboration between different organizations. For this, the focus was on building links and collaborations with other organizations addressing either health or democratic accountability issues. This led to working together and to drawing-in people from the other networks. The aim was to unite forces with people with similar values, but with often different perspectives, strategies and experiences.
These activities all impinge on participation. But as we have seen from PHM experiences, they do not necessarily have to occur in any order; they rather are part of a cyclical process. Working collectively is a must, because alone, each of us is helpless to change very much. Divided we beg, united we demand. We thus have plenty to learn from the lessons of mutuality or even of militancy. Charity/compassion is not the PHM way; organized solidarity is.
Different contexts call for context-sensitive ways and forms of participation. Collective acts are happening all the time, mostly the result of non-political and personal leadership initiatives. To make these really count and add up to something, they need to be progressively channelled into new patterns of higher political meaning and impact. Unless we emphasise continuity, follow-through actions and translate these popular struggles into action, they remain mere words, unable to solve or challenge current health injustices.