Findings from the C-STACS Mental Health Citizen Science Study

Olamide TODOWEDE1, Stefan RENNICK EGGLESTONE1, Stuart MORAN 1, Doreen BOYD1, Mike SLADE 1

1University of Nottingham , Nottingham, United Kingdom

Introduction

Mental health research can drive innovative approaches to providing care through mental health services. The Citizen Science To Achieve Coproduction at Scale (C-STACS) study explored the use of citizen science to create new mental health knowledge relevant to service provision. 

Methods

We conducted four work packages (WPs) to understand, inform and develop a mental health citizen science programme. These were: a systematic review (WP1- https://doi.org/10.3389/fpsyt.2023.1175311); semi-structured interviews with people with lived experience of mental health, carers, mental health workers and researchers (WP2); and two proof of concept citizen science projects (WP3&4). WP3 and WP4 seek to understand the self-management approaches that people use in managing their mental health and what mental health recovery means to them. We further co-produced a theory of change model with stakeholders to evaluate and guide the citizen science projects.

Results

We developed guidance for reporting mental health citizen science projects to complement existing European Citizen Science Association guidance. Analysis of semi-structured interviews identified five broad themes on the use of citizen science in mental health: (1) Safeguarding, (2) Feedback, (3) Complexity of citizen science planning, (4) Implication of Citizen Science on mental health research, (5) Data Quality.  The citizen science projects produced a list of common self-management approaches people use to manage their mental health and generated narratives describing what a recovery-oriented mental health system looks like to people with lived experiences of mental health problems.

Conclusion

We found that citizen science is a mechanism for developing inclusive participation in mental health research and practices but is resource-intensive and requires systematic planning and complementary IT infrastructure. The approach requires matching it with appropriate participatory approaches such as co-production to ensure the buy-in of stakeholders and planning for potential risks.