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Following 50 years of apartheid, South Africa introduced visionary health policy committing to the right to health as part of a primary health care (PHC) approach. Implementation is seriously challenged, however, in an often-dysfunctional health system with scarce resources and a complex burden of avoidable mortality persists. Our aim was to develop a process generating evidence of practical relevance on implementation processes among people excluded from access to health systems. Informed by health policy and systems research, we developed a collaborative learning platform in which we worked as co-researchers with health authorities in a rural province. This article reports on the process and insights brought by health systems stakeholders. Evidence gaps on under-five mortality were identified with a provincial Directorate after which we collected quantitative and qualitative data. We applied verbal autopsy to quantify levels, causes and circumstances of deaths and participatory action research to gain community perspectives on the problem and priorities for action. We then re-convened health systems stakeholders to analyse and interpret these data through which several systems issues were identified as contributory to under-five deaths: staff availability and performance; service organization and infrastructure; multiple parallel initiatives; and capacity to address social determinants. Recommendations were developed ranging from immediate low-and no-cost re-organization of services to those where responses from higher levels of the system or outside were required. The process was viewed as acceptable and relevant for an overburdened system operating ‘in the dark’ in the absence of local data. Institutional infrastructure for evidence-based decision-making does not exist in many health systems. We developed a process connecting research evidence on rural health priorities with the means for action and enabled new partnerships between communities, authorities and researchers. Further development is planned to understand potential in deliberative processes for rural PHC.
We worked in Mpumalanga province in rural northeast South Africa. Mpumalanga is one of nine provinces in the country, with a population of 4.4 million (7.8% of the national population). More than half the population is rural (nationally it is around one-third) (SSA, 2017b; World Bank, 2018b). In 2014, reflective of the situation nationally, unemployment in the province was 26%, with 51% living in poverty (SSA, 2017a). In 2015, life expectancy was 50 and 53 years for males and females, respectively, lower than the national average of 60 and 67 years, and under-five mortality was 41 deaths per 1000 live births in 2012, which is comparable nationally (MDoH, 2015; Bamford et al., 2018; WHO, 2019). Mpumalanga Department of Health (MDoH) delivers need-based services through an integrated health system covering three districts and 18 local municipalities (MDoH, 2015). The MDoH structure includes five strategic directorates: HIV/AIDS, sexually transmitted infections and TB Control (HAST); communicable disease control; non-communicable diseases (NCD); maternal, child, women and youth health and nutrition (MCWYH&N); and research and epidemiology. The research was located at the MRC/Wits Rural Public Health and Health Transitions Research Unit, which hosts the Agincourt Health and Socio-Demographic Surveillance System (HDSS). Established in 1992, Agincourt is the oldest HDSS in South Africa, collecting longitudinal data on vital events for a population of approximately 116 000 (Kahn et al., 2012). The first step was to identify evidence needs with the health authorities. We initiated the partnership with MDoH through the Agincourt HDSS Stakeholder Engagement Office, a group with long-term links to different levels and sections of the health system. In 2013 we arranged an initial engagement with the MCWYH&N Directorate in which the aims, scope and HPSR approach were introduced, and a process was proposed to work as co-researchers to produce and analyse data of practical relevance. In the initial engagement, MDoH articulated a lack of timely and robust evidence on contributory circumstances and events occurring outside facilities in under-five deaths as a priority area on which the Directorate had little information. On this basis, we collected data on under-five deaths in rural villages in the Agincourt HDSS as follows: We acquired verbal autopsy (VA) data from routine surveillance in Agincourt HDSS to quantify levels and causes of under-five deaths in the site. VA is a pragmatic approach to ascertaining medical causes of death in populations where registration systems are incomplete or absent (Nichols et al., 2018). Responding to the evidence gaps identified with MDoH, we further developed prior modifications to the VA method to capture additional information on circumstances and events outside facilities at the time of death. Data were acquired on all 54 under-five deaths identified and investigated with VA in Agincourt HDSS over a 2-year surveillance period 2012–13. These data were processed using InterVA-4, a public-domain probabilistic model for VA data interpretation (www.interva.net) to generate cause-specific mortality fractions (Byass et al., 2012). The tool processes VA input indicators as defined in World Health Organization (WHO) VA standard and delivers WHO-defined cause of death categories compatible with the International Classification of Diseases version 10 (ICD-10). The VA data revealed high levels of under-five mortality owing to infections (>70%) and multiple and reinforcing barriers to access reflected in not calling for help and not travelling to a facility at the time of death. The analysis is reported elsewhere (D’Ambruoso et al., 2016). We introduced a participatory action research (PAR) process in the Agincourt HDSS study area in 2015 to elicit local knowledge on under-five mortality and priorities for action. Participatory methodologies generate local knowledge on the relationships between social conditions and health for action and learning on action (Loewenson et al., 2014). Service users and providers at village level were convened and consulted on under-five deaths, with experiences and perspectives elicited and systematized using methods such as ranking, diagramming and participatory photography (Catalani and Minkler, 2010). Community stakeholders identified social and structural root causes of under-five mortality as inadequate housing, high unemployment and lack of clean, safe water, and perceptions of poor quality of care in clinics related to long waiting times, lack of triage, overcrowding, delays in treatment, medication shortages and confidentiality breaches. Community stakeholders also developed priorities for action to reduce unemployment, provide clean water, expand community health education, and clinics with accountable and responsive staff. This analysis is also reported separately (Wariri et al., 2017). The final stage was to take the VA and PAR data back to health systems stakeholders to analyse, interpret, formulate recommendations for policy, planning and practice and reflect on the process. Following initial organization and analysis, we re-convened MDoH stakeholders. With steer from the MCWYH&N directorate, stakeholders were identified to include a range of levels and perspectives. Two formal workshops were held from May to November 2016: one with the provincial directorate for MCWYH&N and one with provincial directorates and district departments (MCWYH&N, NCDs, PHC, and research and epidemiology). Both workshops were held in the City of Mbombela as a convenient location for participants. In the workshops, investigators and stakeholders worked together as a plenary group to analyse and interpret the VA and PAR data with reference to local policy and planning, and reflected on the utility of the process. We collected data in presentations, registers, minutes, observational notes and reflective journal data to record interpretations and proposed responses. The analysis was further developed through informal exchanges in person and in writing. In the following section, we present the provincial and district stakeholders’ substantive interpretations and recommendations to illustrate the explanatory potential of the collaborative learning approach. For the VA component, secondary analysis of existing anonymized data was undertaken and approved by the authors’ institutes. For the PAR, informed consent was sought from all participants, all identifiable data were anonymized, approvals obtained from the authors’ institutes and from the provincial health authority. The provincial and district health systems stakeholders’ interpretations are presented as a professional working group in this jointly authored piece.
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