Depression Detectives

Depression Detectives was a [pilot] 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. We wanted to make depression research better by listening to and working with non-scientists and putting lived experience at the heart of research.

Just under 100 people joined the project Facebook group, 1/3rd of whom were researchers and 2/3rds were people with lived experience.

Depression Detectives participants quizzed real live scientists and discussed where there were gaps in the research. These Q&As were written up for the project blog and disseminated via social media. https://blogs.ed.ac.uk/depressiondetectives/online-qas-2/

The group then designed their own research study, and ran it together with researchers. They chose the question: "Do people report all episodes of depression to their GP? And if not, why not?" The group undertook a survey (26 people answered) and some focus group discussions within their Facebook group. A PhD student also looked at UK Biobank data on their behalf.

The results have been written up as a report: https://blogs.ed.ac.uk/depressiondetectives/our-results/ And a series of infographics for different audiences (GPs, Researchers, Patients and policymakers) https://blogs.ed.ac.uk/depressiondetectives/2022/01/07/infographics/

Dissemination
We are in the process of disseminating these infographics and results.

Provisional results were presented at an MQ meeting and there was a lot of interest from data science researchers in both the process and the results.

The project was also presented at an MRC Scottish Comms meeting and again was well received, with several PE staff considering the online Q&A format as a future engagement tool. 
The results have also made our own research team consider how best to interpret the GP data that they work with. 

Evaluation Extracts from interviews with 4 participants (whose active involvement in the project varied). - All of the participants spoke about their realisation that depression is more complex than they had realised. - “I really liked this approach, it is so innovative and democratic.”- 'Jack' said that taking part in this citizen-science project taught him a lot about how research is done and all the steps that need to be considered. It made him feel more motivated to read research literature, and he felt that, through the project, he had developed a more critical perspective on different kinds of research and their limitation - 'Jack' said that he would approach health-care providers differently now. He particularly highlighted that if he was talking to a doctor again, he would mention complexities of his depression or any comorbidities, rather than simplifying the problem, and that he would also take more time and consideration about which treatments he would choose: - Although Depression Detectives was not designed as a peer support project (this was outlined in the guidelines), participants still benefitted immensely from sharing their experiences with others and from listening to each other’s stories. - All interviewees said that they would take part in a project like Depression Detectives again, and that they would recommend taking part 
Extracts from participants survey (14 responses) - 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. (Higher level of participation/ involvement.) - in the future absolutely I feel better equipped and a bit more confident to question things - Yes, the project did more than meet my expectations. The enormous wealth of knowledge on depression helped me understand the various manifestations of the illness, i.e. Genetic, episodic, major depression, bipolar disorder, chronic recurring episodic depression. 
Extracts from Researchers Survey - Really useful to get the opinions of people with lived experience over time - better than just having one or two meetings. It's an excellent public engagement strategy and I hope it will continue in some way. - we discovered things that researchers might take for granted are unknown by the public and vice versa. - Insightful directions for future research. - I realise that there are a lot more practical questions about how to treat depression rather than what may cause depression. I think it is sensible to consider bringing more translational aspects to our research.

Citizens science project that brought together people with lived experience of depression and data science researchers, to design and run a small pilot research project.

Our research question: Do people report all episodes of depression to their GP? And if not, why not?

26 PEOPLE COMPLETED OUR SURVEY AND 10 PEOPLE TOOK PART IN FOCUS GROUP DISCUSSIONS WITHIN THE FACEBOOK GROUP.
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.
This means that many of the ways they treated their depression would not be visible within their health records (i.e. not available to data science researchers). https://blogs.ed.ac.uk/depressiondetectives/our-results/

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.