Listening before the next death
- Wits University
How VAPAR turned verbal autopsy, community intelligence, and action learning into a model for rural health systems.
“Alcohol is destroying our communities and families. If we continue like this, our children will not have a better future.”
This was the diagnosis of a community in rural Mpumalanga, where for 10 years residents participated in identifying health problems to inform the development of better, more appropriate health care services.
An evaluation of the Verbal Autopsy with Participatory Action Research (VAPAR) initiative, launched in 2015 by the SAMRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), the Mpumalanga Department of Health, and the University of Aberdeen, found that better health data to strengthen health systems is not only produced through routine statistics or medical cause-of-death information.
“We found that local knowledge, frontline experience, verbal autopsy, participatory action research and structured learning between communities and health system actors allow health systems to learn from deaths that routine data often misses,” says Dr Lucia D’Ambruoso, VAPAR’s Principal Investigator.
What communities can show that statistics cannot
In the case of alcohol and drug abuse, residents described it as a self-sustaining social crisis linked to poverty, debt, violence and wider community hardship, with destructive effects on families and a disproportionate impact on children and young people.
Researchers placed this community knowledge alongside verbal autopsy data, which suggested that alcohol and other drug abuse contributed, at least in part, to around 30% of deaths in the local setting.
“I think VAPAR has helped shift what health data actually consists of. Yes, there are registers and datasets, but we also want to know how people experience risk, why people avoid clinics, why treatment is interrupted, why violence is hidden, why transport fails, why stigma matters, and why services may not be trusted,” says Professor Kathleen Kahn, who is chief scientist at Agincourt.
New biosocial understandings of deaths
Verbal autopsy is a method in which, through structured interviews with relatives or caregivers, researchers gather information about signs, symptoms, and events leading up to death and use this information to identify a probable medical cause of death.
But VAPAR took verbal autopsy further.
One important part of this was COMCAT, the Circumstances of Mortality Categories tool, which extended the categories used to classify deaths. Instead of classifying deaths solely by medical causes, the team introduced social codes within medical classifications. This allowed researchers to produce new biosocial understandings of deaths within the surveillance population.
This method was later taken up by the South African Medical Research Council in a national cause-of-death study and has been used in a range of low- and middle-income settings, from the Democratic Republic of Congo to Indonesia, as well as in Saudi Arabia, to explore deaths and conditions beyond the maternal and child health deaths that this type of analysis has often focused on.
The second part of VAPAR is participatory action research.
“Communities are not treated only as sources of information. They are recognised as people with knowledge, experience and the capacity to analyse problems, identify priorities and act on them,” explains D’Ambruoso.
Together, extended verbal autopsy, COMCAT, and participatory action research provided the team with strong evidence to bring to a learning platform with the district. Strong, in this case, means evidence that was locally relevant, relatable and actionable.
In earlier VAPAR-linked work in the Agincourt health and demographic surveillance site, community groups explored local knowledge on HIV/AIDS and violent assault. Their discussions showed how mortality was shaped by more than disease or injury.
Participants described how poverty, debt, stigma, gendered power, traditional beliefs, alcohol and substance use, high transport costs, poor confidentiality and weak emergency response could all influence whether people protected themselves, disclosed illness or violence, sought care, stayed in treatment or reached help in time.
Evidence that does not sit on a shelf
Integral to VAPAR’s design was the idea that evidence should lead to action.
The aim was not to produce another dataset that sits on a shelf or in an online repository, written up in the international literature but disconnected from the place where the data were collected and organised.
Instead, VAPAR set out to connect verbal autopsy, community intelligence and routine health information to the health system.
“What astounded me was how little time it took for unconnected actors to find a common cause. The process showed the promise and difficulty of multisectoral action,” says D’Ambruoso.
The team quickly realised that appreciative action learning was needed to document the implementation challenges and feed them into the next action plans. Over repeated action-learning cycles, action plans learn from themselves, becoming more focused, informed and achievable.
Creating psychologically safe spaces to piece together evidence
The key was to create repeated, psychologically safe spaces where people could deliberate over problems, develop joint action plans and return to ask what had happened.
Over that time, VAPAR evolved from a research process linking verbal autopsy and participatory action research into a health policy and systems research learning platform embedded in primary healthcare governance.
“Across the decade, four mechanisms – role clarity, trust-building and recognition, collective sense-making, and strengthened agency – were identified. Our platform was one where all actors met regularly to interpret evidence, understand each other’s constraints and develop practical responses,” explains D’Ambruoso.
The work is now moving into its next phase. The team is planning with the district to adapt the VAPAR learning platform to support the delivery of care for women in health centres, continuing the central lesson of the project: that better health systems begin by listening before the next death.