Realising Radical Potential: Building Community Power in Primary Health Care through Participatory Action Research

"Health inequalities are thus social issues with social causes and can only be solved with collective, social action..."

The active participation of communities in service planning and delivery has been recognised since the 1978 Declaration of Alma-Ata as a central pro-equity approach in primary health care (PHC). However, there is limited operational guidance on how participation works, especially in terms of expanding people's agency to address unjust and illegitimate use of power and to challenge health inequalities. This paper presents an analysis of community power-building in PHC through a participatory action research (PAR) programme located in a setting of structural deprivation in rural South Africa. Based on this experience, the paper offers practical guidance to support participation as a sustainable PHC component.

As explained here, "Nearly three decades after the brutal apartheid regime, post-apartheid societal progress is deteriorating in South Africa, which in 2022 is the most unequal country on earth....Entrenched health and social inequalities notwithstanding, the democratic order was and is committed to inclusive development. In 1994, the health sector was transformed from a system of institutionalised racism into a PHC system focused on equitable provision, prevention, promotion, and participatory governance...A key pillar of the strategy is Ward-Based PHC Outreach Teams (WBPHCOTs) providing home and community-based services linked to PHC facilities, with community health workers (CHWs) playing major roles..., and with power devolved to communities....In practice, however, there is slow and uneven implementation of WBPHCOTs, low coverage, insufficient staff, and low awareness of expanded CHW roles....Beyond representation on clinic committees, community participation is confined to basic clinic support..."

The PAR process used in this experience was part of the Verbal Autopsy with Participatory Action Research (VAPAR) programme. PAR is a critical enquiry process for social change that emphasises local expertise, democratisation of knowledge production, and empowerment through collective action-learning. It is rooted in an emancipatory enquiry paradigm concerned with democratic power as a response to social injustice. PAR reframes the roles of those participating as active researchers and change agents and is concerned with collective action as a means to new knowledge. The programme was organised around a PAR framework with series of reiterative cycles connecting service users and providers to generate and act on evidence of practical, local relevance. Each cycle had 3 components: "engage/observe", "analyse/plan", and "act/reflect". The design was rooted in health policy and systems research (HPSR), focusing on how societies organise to protect and promote health, and health systems as complex, adaptive, human, and relational.

The research took place in Agincourt, covering a population of 120,000 in 31 villages. Stakeholders representing rural communities, government departments, and non-governmental organisations engaged through a PAR process consisting of 3 reiterative cycles (2017-2019; 2019-2020; and 2021-2022) of evidence generation, analysis, action, and reflection. Local health concerns were raised and framed by community stakeholders, who generated new data and evidence with researchers. Dialogue was then initiated between communities and the authorities, with local action plans coproduced, implemented, and monitored. Throughout, efforts were made to shift and share power and to adapt the process to improve practical, local relevance. For example, in Cycle 3, to preserve community control, 3 community stakeholders from the previous cycle agreed to join the cycle as "community mentors" to provide support and insight into participatory principles.

To assess the process, the researchers analysed participant and researcher reflections, project documents, and other project data using the Emancipatory Power Framework (EPF) to understand community power building (power within, power with, power to) and the Limiting Power Framework (LPF), which is sensitive to spatial dimensions of negative power within and beyond the "local".

Key findings:

• Cycle 1: establishing collective capabilities and spaces with mutuality, and collaboration - Community stakeholders identified alcohol and other drug (AOD) abuse and lack of safe water as priority health concerns. Youth and women of reproductive age were nominated as people affected by and whose voices were excluded from attention to the issues, respectively. Sensitive and assertive facilitation was required to ensure their inclusion most directly. Engagement gradually improved as core principles were transmitted, discussed, revisited, owned, and taken up. Ownership was supported as participants assumed control of the process. Collective capabilities ("power within") developed as participants' familiarity built with public speaking, analysis, consensus-building, and co-facilitation and recording of meetings. As a weekly rhythm of workshops was established, groups collectively deliberated over causes and impacts of AOD abuse and lack of water, mapped key stakeholders and agencies, and developed and appraised local action agendas. Credible, actionable information and collective capabilities were the foundations upon which participants engaged with the authorities. Through this process, "power with" emerged; health officials came to see community stakeholders as active change agents, rather than passive beneficiaries, and community power deepened as tangible commitments for local action were developed with representatives of the authorities. The deepening of opportunities and spaces for collective action conferred a new legitimacy to the process, enabling "power to".
• Cycle 2: Expanding spaces for local decision-making - Grounded in and accepted by the district health system, a pronounced "localisation" emerged. Community stakeholders engaged more deeply as co-researchers. Community ownership extended further as participants identified and recommended new stakeholders to join. As well as those directly affected, this included leaders from the traditional authorities and the Community Development Forum (CDF), which supported more nuanced understandings of local power structures and dynamics. Community stakeholders, moreover, worked with the PAR tools quickly as they understood them, taking ownership of discussions and leading and facilitating the deliberations. This development deepened "power within" and extended "power with". As COVID-19 took hold in early 2020, the second cycle was interrupted and redesigned to be of practical support in rural communities and the district. The collective re-design revealed an urgent need to formalise dialogue spaces for collective action, which extended "power to" in terms of establishing new structures, processes, and opportunities cooperative learning and action.
• Cycle 3: Connecting and sustaining structures and opportunities for action - The third cycle was reconfigured to include a training programme to support CHWs to develop community mobilisation competencies by: connecting, raising, and responding to local health concerns; using rapid PAR tools and techniques; and facilitating action in communities, the health systems, and public services. The third cycle drove "power within", "power with", and "power to": developing a collective voice driven by CHWs, connecting with other agencies and communities, and further embedding the platform with a focus on CHWs as key public health agents in the district health system, respectively. Analysis with the EPF revealed that power-building dynamics were non-linear; different components of the EPF progressed in different ways in each cycle, and overall.

In terms of the LPF, the analysis documented forms of power-limiting community control, measures to address these, and areas that need attention. Compulsory power, institutional power, structural power, and productive power are discussed. For example, the latter is characterised as invisible, operating through social discourses and practices to legitimate some forms of knowledge while marginalising others. During the workshops, some stakeholders were dominant and disruptive, leading to others feeling intimidated to speak up. The researchers dealt with this with sensitive, but assertive, facilitation reinforcing principles of democratic participation, voice, representation, and respect.

Citing the work of Jennie Popay and colleagues, the final sections discuss the development of community capabilities (the so-called "inward gaze", focused on proximal neighbourhood conditions) and the wider systems and structural influences (the "outward gaze", focused on political and social transformation for greater equity). The researchers then reflect on and summarise key insights and transferrable learning. Overall, they argue that "a deeply hierarchical system, and society, notwithstanding, nurturing and democratising the processes through which community agency interacts with and influences social and institutional structures can support shifts towards cooperative mind-sets, alliances, and new ways of thinking increasing the visibility and legitimacy of cooperation learning." Impacts were seen in demand for implementation outside the study setting, and the process was subsequently scaled across the sub-district.

Finally, the paper (see Figure 8) offers a practice framework to expand community power in PHC: (i) prioritising community capability-building, (ii) building dialogue and trust in and navigating social and institutional contexts, and (iii) developing and sustaining authentic learning spaces. "The framework is intended to encourage a critical appreciation of participation as deeply relational, non-linear, and gradual, prioritising mutuality and connectedness, and supporting ideas of power as fluid and circulating."

In conclusion, the researchers write: "Our findings illustrate the non-linearity and mutuality of power building, the challenges involved and the importance of balancing power while building spaces for capabilities to be developed and for engagement, especially with those with the power to act. We developed a view of participation as a form of power, as fluid and circulating, with radical potential and pitfalls. With a critical view of participation, attending to creating spaces to connect and mediate connections...has the potential to develop new popular agency for community-based claims to health..."