Depression detectives: piloting a methodology for online co-produced research

Area of Science:

• Mental Health Research
• Data Science
• Public Health

Background:

• Incorporating lived experiences into research can improve depth, relevance, and equity.
• Data scientists have been slow to adopt this approach.
• The "Depression Detectives" (DD) project connected Big Data researchers with individuals with lived experience of depression.

Purpose of the Study:

• To bridge the gap between data science and lived experience in depression research.
• To explore health-seeking behaviors and under-reporting of depressive episodes.
• To evaluate the co-production process and participant experiences.

Main Methods:

• A co-production project was conducted in a private Facebook group (Feb-Sep 2021).
• Seventy individuals with depression and thirty researchers participated.
• Methods included surveys, focus groups, and analysis of UK Biobank data.

Main Results:

• 67% of individuals with depression in UK Biobank had no GP record; 84% of DD participants reported visiting their GP for half or fewer episodes.
• Barriers to reporting included stigma, healthcare dissatisfaction, and preference for non-medical interventions.
• Participants found the research process rewarding and quasi-therapeutic.

Conclusions:

• Co-production enhances mental health research by integrating lived experiences with big data.
• Findings better reflect real-life experiences, improving personalized mental health care.
• Advocates for holistic depression treatments and inclusive policy development.