Putting Communities at the Center of Mental Health Research in Africa
By Christine Ger Ochola – Communications Officer - APHRC
Community engagement in mental health research is too often treated as just another box to tick rather than a guiding principle. Engagement activities may be carried out, meetings convened, and insights gathered, only for researchers to move on to designing solutions with little further involvement from the very communities they consulted. This approach turns engagement into a process of extracting from communities instead of working with them. What results is consultation, not genuine collaboration.
For a long time, many research and development initiatives followed a familiar pattern: experts would identify a problem, develop an intervention, and later approach a specific community to seek their feedback. Yes, as Sherry R. Arnstein's framework on citizen participation reminds us, consultation alone does not constitute meaningful participation. When communities have little influence over decisions, their voices may be heard, but they are not truly shaping the outcome.
Working on the Mental Health Data Prize-Africa (MHDP-A) initiative, led by the African Population and Health Research Center (APHRC) in partnership with Wellcome, I have learned that meaningful engagement requires a different mindset. It requires both the project leads and partners to think outside the box. People with lived experience (PLEs) in mental health are not just sources of information; they are partners and experts whose knowledge should shape the work from the beginning.
One of the most valuable lessons from the MHDP-A initiative is that to achieve meaningful engagement, we must start by listening before planning anything. This would require asking people with lived experience, "What matters most to you?" What would be considered important and respectful in your situation? How should you present your experiences? What language reflects dignity and reality? These discussions are not just for formality; they are necessary for meaningful engagement.
When PLEs are included from the beginning, they help set priorities, question assumptions, and guide the development of solutions. As a communications professional who translates complex research into clear, actionable and policy-relevant recommendations, I found that the PLEs have offered insights that data alone cannot provide. They help researchers and organizations understand not just what is happening, but what it means to those living through it. This matters even more in mental health, where experiences are very personal and shaped by culture, community, and social factors.
The experience also reinforced another important lesson: language matters. The words we choose reflect how we value people's contributions. There is a significant difference between saying a project was informed by people with lived experience and saying it was co-designed with them. Likewise, there is a difference between telling someone's story and ensuring they have agency over how that story is shared. These distinctions may appear subtle, but they reveal whether people are viewed as passive subjects or as equal partners in the research process.
Meaningful engagement also extends well beyond workshops and consultations. Too often, communities generously share their experiences without ever learning what became of their contributions. Closing this feedback loop is essential. Returning to communities to demonstrate how their insights influenced research, communication products, or policy discussions builds trust and reinforces that their voices mattered. Sometimes this may be as simple as sharing a social media post that sparked public conversation or showing how community feedback shaped a report or recommendation. These actions demonstrate that lived experience is valued not as a project requirement, but as legitimate knowledge that influences decisions.
True engagement means doing several things together, such as sharing ownership, setting priorities, designing approaches, interpreting results, and ensuring that communities are reflected in the outcomes they help create. This requires accountability with communities, not just accountability to them. However, this way of working is usually not the easiest. It always demands a lot of time, flexibility, patience, understanding and willingness to share responsibility with the people whose lives and experiences shape the work. Collaborative processes may take longer than usual approaches, but they often yield stronger, more meaningful results.
As mental health research and innovation grow across Africa, we need to rethink how we involve communities. Engagement should not be seen just as the last step or a requirement, but as part of the process from the start of every project. Researchers and organizations need to make real spaces for people with lived experience to help make decisions. Funders should support the time and resources needed for true co-creation, while communication teams must ensure stories are shared ethically and that PLEs have a say in how their experiences are portrayed.
People with lived experience belong at the heart of mental health research. When we move beyond consultation to genuine partnership, we do more than strengthen research. We build trust, restore agency and develop solutions that are grounded in the realities of the people they are intended to serve. That is how meaningful engagement creates lasting impact.
