The Lived Experience Working Group has worked with SRHIN for nearly a decade, from the Brave Heart programme in displaced communities of Northern Nigeria to Genscore today. On this project they are co-applicants: sharing responsibility for decisions, outputs and governance.
During Brave Heart, it was LEWG members, not the researchers, who showed how standard tools miss the way distress is actually spoken.
The clinical tools ask about “feeling tired or having little energy”. In our communities, people say “my body dey weak me”. That phrase is nowhere in the PHQ-9, so the suffering it carries scores zero.
Gender-balanced, spanning different levels of literacy and lived realities, and expanding to include Yorùbá and Hausa language expertise, digital health and AI literacy. Members are recruited through trusted community health networks, advocacy organisations and Brave Heart partnerships, and are compensated for their work.
Members refined Hausa questionnaires for clarity, stigma sensitivity and cultural resonance, co-generated and validated Pidgin PHQ-9 items with AI specialists, and will co-author the Human Oversight Charter that defines the ethical standards for how adapted assessments are used.
Delphi validation of AI- and expert-generated items, think-aloud sessions, stigma and acceptability reviews, co-facilitated qualitative interviews. In this phase they co-create annotated text and audio datasets in all three languages and co-interpret the findings.
Members serve as lead or first authors on research publications, present findings in community workshops and policy dialogues, and guide public storytelling. Dissemination is led by the people the research is about, not merely reviewed by them.
A structured operational layout of our 12-member panel dividing oversight responsibilities and languages across clinical validation vectors.
6 with lived experience of depression | 6 with lived experience of anxiety
Languages: Hausa — English, Yoruba — English, Pidgin English — English