Co-development of a Mental Health Data Discovery Platform and Harmonisation of Mental Health Measures for Young People in South Africa (PAMHoYA)
1
University of the Witwatersrand, Johannesburg, South Africa
2
Stellenbosch University, Stellenbosch, South Africa
3
South African Population Research Infrastructure Network, Cape Town, South Africa
4
University College London, London, United Kingdom
5
South African Medical Research Council, Cape Town, South Africa
6
Sol Plaatje University, Kimberly, South Africa
7
GRT-INSPIRED, Johannesburg, South Africa
Popul. Med. 2026;8(Supplement Supplement 1):A941
ABSTRACT
INTRODUCTION:
Young people in South Africa face a disproportionate burden of mental health challenges¹, driven not only by biological and medical factors. These challenges are compounded by persistent historical and contemporary inequalities in health, education, and employment, and high poverty² and crime rates³. Despite this, the voices and needs of young people, especially those with lived experience of mental health, often remain invisible within fragmented, inconsistent mental health data. In the absence of integrated, accessible, and inclusive data systems, translating existing knowledge into effective mental health policies and interventions remains constrained⁴. This study aims to address the critical gap in youth mental health data by co-developing a youth-centered mental health data platform for young people aged 15–24 years, grounded in lived experience.
METHODS:
This project adapted the Design Science Research Methodology⁵, integrating a co-development approach⁶,⁷ to guide the design and implementation of the data discovery platform and harmonisation. We collaborated with lived experience experts, scientists, the national department of health, and civil society advocates to identify and harmonise mental health datasets in South Africa and design an open-access data discovery platform.
RESULTS:
We: a) identified 19 studies, most of which were cross-sectional, with commonly applied tools including the CES-D10, the PHQs, and the Generalised Anxiety Disorder scales; b) harmonised mental health measures using Natural Language Processing; c) co-designed the mental health data discovery platform; and d) are making harmonised datasets openly accessible via the SAPRIN⁸ data repository.
CONCLUSIONS:
By building with, not just for, young people, this platform reimagines how mental health data can drive meaningful change. Thus, the platform not only consolidates existing mental health data but also amplifies the voices and lived experiences of young people. The inclusive, co-creation approach ensures a relevant, user-centered platform to support mental health research, surveillance, and policy in South Africa.
Young people in South Africa face a disproportionate burden of mental health challenges¹, driven not only by biological and medical factors. These challenges are compounded by persistent historical and contemporary inequalities in health, education, and employment, and high poverty² and crime rates³. Despite this, the voices and needs of young people, especially those with lived experience of mental health, often remain invisible within fragmented, inconsistent mental health data. In the absence of integrated, accessible, and inclusive data systems, translating existing knowledge into effective mental health policies and interventions remains constrained⁴. This study aims to address the critical gap in youth mental health data by co-developing a youth-centered mental health data platform for young people aged 15–24 years, grounded in lived experience.
METHODS:
This project adapted the Design Science Research Methodology⁵, integrating a co-development approach⁶,⁷ to guide the design and implementation of the data discovery platform and harmonisation. We collaborated with lived experience experts, scientists, the national department of health, and civil society advocates to identify and harmonise mental health datasets in South Africa and design an open-access data discovery platform.
RESULTS:
We: a) identified 19 studies, most of which were cross-sectional, with commonly applied tools including the CES-D10, the PHQs, and the Generalised Anxiety Disorder scales; b) harmonised mental health measures using Natural Language Processing; c) co-designed the mental health data discovery platform; and d) are making harmonised datasets openly accessible via the SAPRIN⁸ data repository.
CONCLUSIONS:
By building with, not just for, young people, this platform reimagines how mental health data can drive meaningful change. Thus, the platform not only consolidates existing mental health data but also amplifies the voices and lived experiences of young people. The inclusive, co-creation approach ensures a relevant, user-centered platform to support mental health research, surveillance, and policy in South Africa.
| eISSN: | 2654-1459 |
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