[This blog post is a one of a series of articles to commemorate the 25th anniversary of CISM]
In the context of biomedical research, the people who belong to local communities are undoubtedly the primary stakeholders in the research. The Manhiça Health Research Centre (CISM) has understood this from the outset, but it has taken some time to learn how to transform this community-centred mindset into concrete actions linked to the centre’s research.
What made us realise the importance of the local community?
In a low-income country like Mozambique, especially in rural areas where investments are less common, the creation of a research institution tends to be quite visible and, therefore, expectations surrounding its impact on the community are unduly high. A comment from a community member during our field activities in 2004 illustrates this misperception: “CISM sells our samples—that’s why they hired so many people all at once and were able to buy so many cars.”
Health research is an activity that only generates visible results in the long term, often impacting generations that did not necessarily take part in the research. Therefore, it can be challenging to demonstrate the correlation between a specific research activity and the benefit to the community.
Our first lesson was that we needed to maintain constant dialogue with the community in order to reconstrue the concept of research and make it understandable within the local context.
A lack of understanding in this regard creates space for community members to be influenced by misinformation about research. This is precisely what happened in 2003 when CISM undertook a clinical trial to evaluate the effectiveness of intermittent treatment of malaria in children under one year of age in Manhiça. During recruitment, we noticed that an unusually large number of people did not want to participate in the study. On one day in particular, we were not able to recruit any participants at all.
After speaking with local mothers, we realised that various rumours had been going around. The one that struck me the most was the belief that CISM intended to kill the children: “They even use coffin-shaped boxes to measure the children so that when they die, CISM can distribute coffins of the correct size.” The “box” in question was an adapted stadiometer used to measure the children’s height as part of the study procedure. Without adequate explanation, this device became “evidence” to support the rumour.
How did we address the main challenges we encountered?
In the short term, we dealt with the rumours by launching information campaigns about CISM’s studies. We also adapted certain procedures to make them less culturally shocking. But we were still lacking an ongoing process of listening and feedback with the community.
Therefore, as a long-term strategy, in 2010 we decided to create a solid and sustainable structure of community participation : the Community Advisory Council. This body consists of a diverse group of community members who meet regularly to receive information about CISM’s research; to share the community’s perceptions, concerns and expectations regarding these studies; and to make recommendations to CISM and discuss other research- and health-related issues.
CISM also created the role of community liaison officer. This person is trained to carry out information, education and communication activities and implement innovative recruitment and retention strategies. CISM has trained seven community liaison officers over the years and currently has four on its team.
These officers need to possess various skills, including the ability to communicate in local and official languages, an understanding of the geopolitical context and the capacity to interact with people from different social strata, including policymakers. Because this is such a broad profile, ideally we prefer to create community engagement teams, which tend to include not only a community liaison officer, who leads the team, but also mobilisers (team members who communicate with local leaders, women and other participants in a particular study) and activists (team members who communicate with the general public, including young people).
Mobilisers, incorporated for the first time in a study on community-based interventions for pre-eclampsia (CLIP), proved to be a key element of our interactions with the pregnant and postpartum women who participated in the study. The addition of the activists is our most recent achievement. As part of the Child Health and Mortality Prevention Surveillance (CHAMPS) network, activists proved invaluable in reaching large population groups. For example, before COVID-19 broke out, we were able to conduct effective community meetings with more than 200 people.
We also learned that certain structures within the communities—community health workers, midwives, traditional medicine practitioners, religious and community leaders, traditional authorities, women and youth leaders, etc.—needed to be preserved rather than duplicated. These are the people we rely on for many of our community outreach activities. To maximise their participation and keep them active, we provide them with training, information and guidance. Many of them are also members of the Community Advisory Council.
How do we work with the community?
Our community participation activities have evolved over time. We started out by participating in community meetings. Nowadays, we are involved in a range of cultural groups—dance, singing, theatre and even a CISM choir—that convey awareness-raising messages to the community, for example about the importance of healthy living, among many other actions.
We also work with local radio stations that help us broadcast messages about studies that are currently underway and spread the word about their results. It is common to hear testimonials from community members explaining CISM’s activities and engaging in live discussions on the air.
We also work with local radio stations that help us broadcast messages about studies that are currently underway and spread the word about their results
Recently, we have taken our community engagement efforts to the next level, beyond simple awareness-raising messages. This approach, known as data to action, enables us to facilitate the participation of the community in finding solutions for social transformation. For example, we helped to develop community strategies for transporting sick or deceased people, which is something that community members had long been calling for.
Another fascinating initiative is our interaction with the children’s schools of Manhiça. In response to the findings of the CHAMPS study on the leading causes of death in children under five years of age, educators are taking measures to upgrade hygiene, sanitation and nutrition conditions in order to improve the survival of children in this age group.
How do we know if it’s working?
We have devised a system for recording all citizen participation activities that allows any facilitator to enter information manually. The data in this system can be consulted at any time and we are able to conduct periodic analyses. We can find out, for example, how many people we have reached, what issues have been addressed and how the community has reacted, allowing us to make comparisons between projects, between locations and over time.
We have also developed an innovative rumour monitoring and management system that allows us to locate and characterise a rumour in real time, detect the source, estimate how widely the rumour has spread and act quickly to prevent it from spreading further.
In conclusion, over the past 25 years, we at CISM have learned that research projects must be designed, from their conception, with a community participation plan in mind. Community participation has evolved from a single crisis management activity to a complex set of ongoing and indispensable activities.