Verbal Autopsy with Participatory Action Research (VAPAR): expanding the knowledge base through partnerships for action on health equity

Health systems can be considered as the products of human relationships: between patients and health workers, managers and policy makers, communities and governments. As a whole, these relationships establish norms of who is eligible for care and what can be expected from the health system. In poor countries where health services are weak and under-funded, care that is unaffordable and unavailable can become socially normal. Communities and health workers have substantial knowledge of these norms and interactions and how health policy is 'brought alive' through them. Their voices are often overlooked in the routine design and delivery of services however.

The project will address this situation by institutionalising processes to: (1) strengthen systems to record and report on deaths, their causes and circumstances; (2) enable the voices of people excluded from access to health systems on their needs and priorities for action, and; (3) act on this information with health workers, managers, planners and policy makers. The process will collect data, analyse, plan and act, and demonstrate an ability to bring about change in partnership with those for whom the situations are most directly relevant. Practical research that is understood and 'owned' by end users in an action-oriented process will strengthen relationships between patients, health workers and policy makers to support and sustain positive change.

The research builds on development work providing actionable health information for poor and rural groups in South Africa. Rural villages in South Africa represent many settings in the region, with deeply entrenched poverty, inequality, avoidable illness, and weak health systems where many deaths go undocumented and uncounted. The development work has adapted Verbal Autopsy, a method used in many poor countries to establish the causes of death for people who die without a doctor present. The research has introduced a system to record new information in Verbal Autopsy on factors such as transport and hospital admissions. In developing countries these processes can play a critical role in survival, and documenting them provides important information for health service provision.

The development work has also tapped into local knowledge on long standing health problems by building partnerships with communities. Using Participatory Action Research, we have developed understandings of the social issues affecting health, and how these affect people's interactions with care. Participatory Action Research provides a route to involve those in the greatest need in health services. This can empower disadvantaged groups to have more of a say in health systems, in turn strengthening people's abilities to protect and promote their health. We have worked with the health authority throughout, considering what the data are telling us, and how changes can be implemented to respond to the issues identified.

The project will extend the development work into an ongoing system of collaborative problem solving, taking data to those who organise and provide services, and working at different levels to understand and enable what is required for change. The work will strengthen existing partnerships with communities, policy makers and planners, and develop new relationships with health workers and clinic managers to act on the evidence towards shared goals. The research will embed a partnerships culture to generate and use information on the realities of health workers and patients to improve care, strengthening access to the health system, achieving improved outcomes and fostering equity in health.

The work has been done with a research centre in South Africa established for over 20 years. A team of researchers and policy makers from universities and health authorities in developing and developed countries who have shaped health research and policy in Africa for over 25 years have come together to lead the five year programme.

Health systems are increasingly considered in terms beyond 'building blocks' models, as complex, adaptive, human and relational. Despite the conceptual advances, people-centered health systems research methods remain underdeveloped. The proposed work will connect two issues: the lack of information on the health of people excluded from access to health systems, and the low utilisation of research evidence by health systems stakeholders. The proposal is to institutionalise a process to strengthen data on mortality registration, combine with local knowledge, and interpret, plan and act on this basis in the health system at different levels. The method combines Verbal Autopsy (VA) with Participatory Action Research (PAR). VA is a method to determine levels, causes and circumstances of deaths. In PAR, communities organise evidence for action. 3 phases are proposed. In Phase 1, a series of 3 reflection and action cycles will be conducted to generate evidence, analyse, plan and act. Data will be generated on levels, causes and circumstances of deaths (using VA) and on health needs and priorities for action (using PAR) with communities. Data will be analysed with provincial level policy makers, action plans will be developed and implemented by district-level practitioners, and progress will be re-assessed in subsequent cycles. In Phase 2, participants and researchers will evaluate the process using realist and political economy methods to understand changes in care, outcomes and progress towards health equity. In Phase 3, sustainability and transferability will be developed with authorities, research and technical groups, health systems stakeholders and communities in the study site, and to the public. The output will be a process based on international standards, that is contextually relevant in health systems at different levels, and capable of translating local priorities into actionable agendas for health systems strengthening as a means towards health equity.

The main beneficiaries will be people systematically and unfairly excluded from access to health systems. The process will routinely produce information on their needs and priorities for equity-informed decision-making. Generating and embedding this information in an action-oriented process at different levels of the health system will achieve impact through inclusive knowledge production and exchange, fostering trust and cooperation towards common goals, and strengthening service organisation and delivery to improve health outcomes and health equity.

The process will benefit health systems at different levels by fostering engagement and ownership in research. Beneficiaries will be health workers, facility managers and community workers at the 'coalface' of the system who make daily decisions about eligibility and access in resource-scarce, demand-intensive environments. Empowering practitioners to be involved in policy creation, implementation and evaluation with communities they serve and stakeholders at higher levels will acknowledge and employ these realities for positive change. At higher levels of the system, the process will build cultures of HPSR to provide clear information on what is to be done by whom, with which means and within what constraints, informing the prioritisation of interventions and policy directives enabling assessment of and advocacy for resources.

A further major intended impact is the provision of a sustainable process. The research will generate and use co-constructed evidence of practical relevance for equity-informed systems strengthening on an ongoing basis. The methods and choices of topics will be led by participants and during the project, the process will shift from a research-based to a country-led endeavour. This will foster ownership for sustainability, address disconnects between policy and implementation, integrate research across sectors, and provide practical approaches to deal with the complexities of implementation that limit data and action. The process will be grounded in the needs of end users to illuminate and harness implementation in an integrated and sustainable system of change.

The research will strengthen capacity for health policy and systems research (HPSR). HPSR is a relatively new field, viewing health systems as complex adaptive systems, using relativist enquiry paradigms, value-based approaches, and intersectoral collaborations with a commitment to action. Despite its relevance for resilient and equitable health systems, methods remain underdeveloped. Building and serving practitioner networks is a further intended impact in this context. Teaching and training resources for health systems practitioners and researchers will be developed and disseminated to build communities of practice and encourage collaboration between communities, service providers and researchers.

Impact will be realised by developing methods and capacities for use within and beyond the study setting. A range of engagements with governments, health systems, research networks, HPSR practitioners, civil society and public engagement groups outside the study setting are planned to promote collaborative HPSR for equity in health systems. Interest in the research to date from research groups, the media, communities and health system stakeholders suggests demand for these.

Multi-faceted engagement, fostering collaboration where actors are united by overall goals and values will accommodate different perspectives and extend impacts overall. The work will build on partnerships with targeted activities throughout. New forms of engagement will also be explored by reaching out to others without prior exposure to the work, including the public, politicians and the media. We will innovate with digital technologies, online and social media, social networks and face-to-face engagement. Targeting these groups with these activities will maximise collaborative opportunities and impacts.