Aims: This project, which ran from 2012 to 2015 and which was funded by the International Development Research Council of Canada, aimed to identify, in two sites (one in South Africa and one in Uganda) opportunities for best practice in utilising community participation as a vehicle for realising health rights. The focus on developing models for community participation in health is intended to speak to strategies that advance health equity and strengthen governance systems for health. By testing approaches and sharing experience gained using rights-based approaches to health, we anticipated generating knowledge of relevance to other developing country contexts.

Methods and Activities: Through the development and testing of media and training materials targeting primarily health committees or structures that act as the voice for communities in relation to the health services, this project sought to build the agency of community structures to articulate more strongly claims for health rights, with a view to proposing models for best practice.

Activities: Activities involved extensive training of Health Committees (HCs) in the Cape Metro Health District in South Africa and Health Unit Management Committees (HUMCs) in two rural districts in Uganda, supported by development of materials appropriate to local context, and with locally appropriate sustainability interventions. Exchange visits were undertaken and added value to the collaboration and HC and HUMC functioning. Strengthened HCs and HUMCs have been able to take up local issues and advocate on behalf of their communities. This has taken place in the context of activities to strengthen Civil Society Networks around the HCs and HUMCs and to engage health officials and policy-makers. The latter has involved working though the Cape Metro District Health Council to draw HCs into a community consultation over two big forums, providing input to draft policy and legislation, engaging with government (Uganda) to support health worker capacity building, and drawing on legal advocacy via the Ugandan Human Rights Commission.

Training for health workers was also a key feature of both sites, though somewhat delayed and somewhat less than anticipated in the Western Cape. Nonetheless, both sites have reported important successes and the Cape Town site is completing the development and production of a DVD featuring HC members and health workers talking about the difficulties and value of community participation, as a training tool for future work with health workers.  The project has also pursued the development of local systems for health committee effectiveness. This has entailed investigation and modelling of patient complaint mechanisms that involve HC’s, as well as modelling different approaches to the establishment of a HC.

Theseis took place in the context of wider health system governance interventions, including training for health care providers, testing of models for using complaints as learning opportunities, and policy interventions aimed at raising awareness amongst key managers. The project used a mix of qualitative and quantitative methods to evaluate different approaches, and drew on postgraduate students to support its research. A component of the project also fed the findings into postgraduate teaching programmes at UCT, and was made available to civil society activists through web-based materials with a view to strengthening civil society agency

Dissemination has taken the form of production and distribution of materials in the form of training manuals for HCs and HUMCs, facilitator guides, pamphlets on rights and participation, use of both organisations’ website for posting reports and materials, and presentations at national and international conferences. A Regional Consultation was held prior to the 3rd Global Health Systems Research Conference in September 2014 and attended by 45 participants from 12 countries. The Consultation produced a set of important recommendations, based on diverse experiences, for strengthening community participation through representative structures. Most important to emerge was the consensus that health committees should be seen as structures for democratic governance within the health system. The Regional Consultation helped to contribute to a range of different strategies that have built strong networks on the right to health more generally at local, national and international level. Within the work of the project, a total 16 students, two interns and a Post-doc have been involved across both sites, of whom 7 have completed their research. Almost all planned milestones and outputs have been successfully achieved.

Impact: The project has demonstrated local level impacts in both sites, leading to improved services, increased resources for health care and stronger advocacy by local committees. As committees’ agency is strengthened the potential for conflict is increased, highlighting the importance of bringing health workers on board and ensuring strong facilitation and support is ongoing. At national level, respondents noted that the work on the ground was reflected in national policy shifts recognising health committees, albeit incremental and slow shifts. Regionally, the basis for a community of practice has been laid and the investigators are active in following this through.

Lessons: We identify a number of lessons important for health systems strengthening. Firstly, we provide evidence for how capacity building of HCs can successfully strengthen their agency as vehicles for community voice. The key reasons for his success relate to the educational methods used which draw on Freierian approach to empower committees and to the integration of a rights-based approach in the training on participation. Secondly, we propose that training must be situated in a broader contextual set of reinforcing health systems interventions to work. The complementary and supporting role of an active civil society is also necessary.

One key common problem identified is the lack of articulation provided for community participation structures with other key elements of the health system – both horizontally and vertically, as a result of which, health committees generally are restricted and isolated. Civil society advocacy can play some role to reverse this atomisation through joint advocacy. A second key challenge is how to enhance community capacity to engage with providers, and to assert health rights within structures intended to be vehicles for community participation, and how the capacity of service providers and managers to be more responsive to community needs can be supported. Our preliminary findings are that HC providers can be moved to positions that are less threatened and more open to engagement. Of course, high- and mid-level political buy-in remains essential for participation to be able to flourish and our research surfaces good examples of such practice.

Key areas of unresolved contestation reflecting the porousness of the context in which health committee operate include  (i) the lack of representation and participation of vulnerable and marginalized communities in the composition of health committees; (ii) the dominance of Health Workers on HCs as a potential conflict of interest; (iii) the absence of clarity on how HCs are constituted affects their legitimacy (iv) the importance of a requirement for HCs to report back to the communities they represent; (v) the inevitability of HCs addressing the social determinants of health, given the heavy burden on poor communities of multiple social risk factors outside the health sector impacting on health. The findings are consistent with model of Aragon (2010) and Elloker et al (2013) who argue for the recognition not only of elements of hardware but also of tangible and intangible software, such as power and values, that may be as important for the functioning of HCs and their meaningful integration in health systems. In thinking through what works and why it works, all three levels of capabilities need to be considered when thinking through the place of community participation structures in health systems governance and in analyzing how HCs can strengthen governance in health systems

We close with a set of recommendations that address the design of community participation, the value of using a rights-based approach for structuring participation, how best to frame monitoring and accountability, strategies for addressing health worker involvement and key networking steps needed. These represent strategies that theme aim to challenge government to recognise and incorporate health committees into their health systems in ways that maintain their roles as autonomous agents for democratic governance.