Redefining Mental Health Research Through Lived Experience
By Benta Wambui - Counseling Psychologist, and Onyango Otieno - Mental Health Advocate
Across Africa, a quiet transformation is unfolding in how mental health research is being done. The Mental Health Data Prize Africa (MHDPA), an initiative led by the African Population and Health Research Center (APHRC) in collaboration with the Wellcome Trust, is redefining what it means to do research with people rather than about them
At the heart of this transformation is a bold commitment: to meaningfully include people with lived experience (PLEs) of mental health challenges in every stage of the research process. The initiative aims to create data-driven solutions to address anxiety, depression, and psychosis, solutions that are rooted in context, compassion, and co-creation
Grounding Research in Human Experience
The foundation of this approach is built on the belief that data is most powerful when connected to human stories. For years, stories of struggle, survival, and strength have been shared in matatus, across social media, in community workshops, and during late-night conversations. These stories remind us that numbers alone cannot capture the full reality of mental health challenges. Every research inquiry must begin with reflection: Who is represented? Who is missing? And what language allows the truth to be told?
Central to MHDPA’s approach is the understanding that safety must come before storytelling. People with Lived Experience (PLE), individuals who have personally navigated mental health challenges, play a key role in shaping how this work is carried out. Through workshops and co-facilitation sessions, PLE partners help create safe, inclusive spaces where individuals can speak honestly, without fear or stigma. They listen for the quiet insights that often guide the work more profoundly than any presentation or dataset ever could.
Researchers’ Curiosity and Openness
Among the most encouraging aspects of this journey has been the openness and humility of the researchers themselves. Despite their academic achievements, they have approached PLE engagement with genuine curiosity, asking deep, reflective questions: Should involvement vary by project? At what stage is engagement most meaningful? The answer, aligned with global best practice, has become clear: PLEs should be part of the research journey from beginning to end, from shaping research questions to interpreting results.
This mindset shift has redefined collaboration within the MHDPA community. PLEs are no longer viewed as participants but as co-researchers, advisors, and collaborators. Their perspectives enrich the work, ensuring that mental health research reflects lived realities rather than abstract theories. The energy and curiosity of the prize teams have been inspiring. Their commitment to learning, questioning assumptions, and building inclusive research cultures signals a genuine transformation in how knowledge is produced and shared.
Empowerment and Ownership
As engagement deepened, PLE contributors began to find their voices and confidence. What started with uncertainty evolved into a growing sense of ownership and pride. Through expert facilitated workshops, storytelling sessions, and collaborative presentations, PLEs began to see firsthand experience of the tangible impact of their contributions.
One contributor captured this shift simply: “I feel like my story matters here, and that gives me confidence to speak up.”
Their input has led to meaningful changes in research design, including the addition of new data variables informed by lived experience. Many PLEs have since taken on mentorship roles, guiding new contributors and nurturing a culture of shared growth and leadership.
Building Equity Through Recognition of expertise
Early in the project, questions arose about compensation for PLE contributors. To ensure fairness and transparency, the MHDPA team reframed compensation not as a token of appreciation but as recognition of expertise. Lived experience was acknowledged as a form of professional knowledge, equally valuable as academic or technical skill. This principle of fair pay strengthened trust and helped dismantle traditional power imbalances that have long characterized research relationships. It also set a precedent for equitable engagement, ensuring that all contributions are respected and appropriately valued.
Collaboration and Institutional Support
The partnership between APHRC and Wellcome Trust has been instrumental in turning this vision into practice. Wellcome’s global expertise and training resources provided a foundation for ethical, inclusive engagement, while APHRC’s regional knowledge ensured that the approach remained grounded in African realities. Together, the partners have developed practical tools, including communication strategies and a robust monitoring and evaluation (M&E) framework, to measure the quality and impact of engagement. Indicators such as PLE satisfaction and researcher attitude shifts are being tracked, providing insights for continuous improvement.
Lessons and the Road Ahead
Several lessons have emerged from this process:
- Openness and humility are the foundation of genuine collaboration.
- Early and equal involvement of PLEs leads to more relevant and ethical research outcomes.
- Fair compensation and role clarity foster trust and partnership.
- Capacity building empowers individuals to engage confidently and meaningfully.
- Institutional commitment ensures sustainability and long-term impact.
The Mental Health Data Prize Africa demonstrates that research can be both data-driven and deeply human. By centering lived experience alongside evidence, MHDPA is proving that meaningful inclusion is not just an ethical responsibility; it is the pathway to better, more responsive mental health systems for Africa.
Through continued collaboration among researchers, policymakers, and people with lived experience, this initiative is charting a new course for mental health research, one where data and dignity move forward together.