Depression Detectives (Citizen Science)

Abstract

Depression Detectives was a (pilot) online user-led citizen science project which ran between Feb-Sep 2021.  It brought together people with lived experience of depression, and researchers who study it, as EQUAL partners. Each participant gave as much or as little time as suited them. 

Method:
Depression Detectives took part in Q&A sessions where they quizzed scientists and discussed where there were gaps in the research. They then designed their own research study.

From a huge list of over 50 potential research areas, the group settled on the question:
“Do people report all episodes of depression to their GP? And if not, why not?”
They looked at this in two ways:

1. A data science project, carried out by PhD student, Melissa Lewins.
2. A set of Focus group questions and an anonymous survey that were answered by members of the Facebook Group.

Results:
Focus group / Survey:
84% of our respondents had gone to the doctors with half or less of their episodes of depression. Many went only with their more serious episodes or when they needed practical help (e.g. to be signed off work). Half of them had regretted not going afterwards.

50% had used private talking therapy instead. Many had managed their episodes using things like exercise, meditation, yoga or social contact. Thus, many of the ways they treated their depression would not be visible within their health records (i.e. not available to data science researchers).

UK Biobank
1,342 people within UK Biobank answered questionnaires in a way that suggested they had experienced depression AND had given permission for UK Biobank to analyse their GP records.
Of those, Melissa found that 67% had no mention of depression in their GP records.

Impact
Public

“ I liked the way that participants were involved in at an early stage. It felt like we had more influence and choice because of this. It's much more meaningful to involve people early in the project, before major decisions have been made.”

All of the participants spoke about their realisation that depression is more complex than they had realised. Some felt more motivated to read research literature. Others had developed a more critical perspective on research and its limitations.
One person said they would approach their health-care provider differently – giving more information about complexities/comorbidities.

Depression Detectives was not a peer support project, but participants still benefitted immensely from sharing experiences.

All interviewees said that they would take part again / recommend to others.

Researchers 
“We discovered that things researchers might take for granted are unknown by the public and vice versa.” 
“Insightful directions for future research.”
“Really useful to get the opinions of people with lived experience over time.”

Dissemination of Results
A short report and infographics for researchers, GPs, policymakers and patients can be found on our blog: https://blogs.ed.ac.uk/depressiondetectives/

This project was a collaboration between Edinburgh Neuroscience and Public Engagement Practitioner Sophia Collins and her team. It was funded by the MRC and Horizon 2020.