[This project has now finished, but we will leave these posts here as a record of what we did] 

The final stage of this project is now here – we’re working on our own piece of research! We’re looking at whether people’s episodes of depression are always visible in their medical records and if they aren’t, what are the reasons? 

We’ve found out that when scientists do research into depression, their information on who experiences depression and how many episodes they have is often mainly based on their medical records. We want to find out whether people’s medical records are a good measure of that, or if a lot of information is missed by using them as a measure, because people may not always go to a doctor for their depression.

We’ll be doing that both on a large scale by analysing existing data, and in detail by asking people within the group about their own experiences of depression. 

Within our group, we’ll be asking if people have always gone to the doctor when they’ve experienced depression, and if not, why not? 

We’re also looking at data from the cohort study UK Biobank, which has asked its participants to fill in a questionnaire to screen for depression and also includes their medical records, to see how well the results of the questionnaire match up with the medical records. If someone has a score on the questionnaire which suggests they are depressed, is there usually also a record that they have seen a doctor for depression at around the same time?

Watch this space to see what we discover!

Over the last couple of weeks, the members of Depression Detectives discussed the top 10 questions we chose from our list of 59 possible research questions, then voted to choose the one question we’ll be using to design a small piece of research which will be done by the group.

The winning question is…

How does ‌chronic‌ depression/dysphoria‌ differ ‌from,‌ ‌say‌ ‌a‌ ‌single‌ ‌episode,‌ or‌ ‌discrete‌ ‌episodes‌ ‌of‌ ‌reactive‌ ‌depression? Are there markers (biological, psychological, behavioural, and current or in a person’s history e.g. trauma) that distinguish them?

The next step is to narrow down this quite broad question to something it’s possible to try and answer in a small piece of research happening over a short time. That’s what we’ll be doing over the next two weeks.

Our Depression Detectives have come up with 59 possible research questions and voted on their top ten.  We are now discussing, narrowing and finetuning them, and finding ways how they could be researched. Every day, we are looking at one of the top ten questions. Then we will then have another vote to decide on the final favourite question, which will be the basis of our study.

THE TOP TEN

1. Do people with depression feel that they predominantly receive help to treat their “symptoms“ vs “origins”? How could this be changed?
2. What is the effectiveness of treatments on offer from GPs on the NHS (mainly anti-depressants and short-term counselling) and what proportion of patients recover with just this, what proportion go on to have a major crisis which enables them to access more in-depth treatment, and what proportion end up self-funding something which actually works in the long-term?
3. How do people who say that they have recovered from depression describe their recovery: Do they think they are “cured” or just “coping better”, “able to spot triggers better”, etc.?
4. How does ‌chronic‌ depression/dysphoria‌ differ ‌from,‌ ‌say‌ ‌a‌ ‌single‌ ‌episode,‌ or‌ ‌discrete‌ ‌episodes‌ ‌of‌ ‌reactive‌ ‌depression? Are there markers (biological, psychological, behavioural, and current or in a person’s history e.g. trauma) that distinguish them?
5. What would need to happen to make a wider range of support available, including more time-intensive interventions? How could access to psychological therapies be improved?
6. What is the‌ ‌link‌ ‌between‌ ‌autism‌ ‌and‌ ‌depression? Misdiagnosis‌ ‌–‌ are ‘symptoms’‌ ‌of‌ ‌depression‌ ‌are‌ ‌actually‌ ‌’traits’‌ ‌of‌ ‌autism‌ ‌(being‌ ‌quiet,‌ withdrawn‌ ‌and‌ ‌needing‌ ‌to‌ ‌shut‌ ‌yourself‌ ‌away‌ ‌from‌ ‌the‌ ‌stimulus‌ ‌of‌ ‌ people‌ ‌and‌ ‌the‌ ‌outside‌ ‌world)‌ ‌which‌ ‌would‌ ‌explain‌ ‌why‌ ‌trying‌ ‌to‌ ‌get‌ ‌someone‌ ‌out‌ ‌and‌ ‌mixing‌ ‌with‌ ‌people‌ ‌as‌ ‌a‌ ‌way‌ ‌out‌ ‌of‌ ‌depression‌ ‌would‌ ‌not‌ ‌work‌ ‌and‌ ‌in‌ ‌fact‌ ‌make‌ ‌things‌ ‌100x‌ ‌worse‌?
7. How can others best support family members or friends with depression? What do people with depression find most helpful?
8. What‌ ‌are‌ ‌the‌ ‌specific‌ ‌problems‌ ‌that‌ emerge‌ ‌from‌ ‌having‌ ‌a‌ ‌parent‌ ‌with‌ ‌depression,‌ ‌and‌ ‌what‌ ‌can‌ ‌be‌ ‌done‌ ‌to‌ help‌ ‌counter‌ ‌these‌ ‌effects?‌ ‌
9. Can‌ ‌parents‌ ‌learn‌ ‌and‌ ‌teach‌ ‌healthy‌ ‌emotional‌ ‌behaviours‌ ‌and‌ ‌positive‌ ‌strategies‌ ‌(e.g.‌ ‌through‌ ‌therapy),‌ ‌even‌ ‌if‌ ‌they‌ ‌can’t‌ ‌always‌ ‌do‌ them‌ ‌themselves?‌ ‌
10. Can we ask GPs what training they received in mental health, whether they think it was adequate to prepare them for GP consultations, what more they would like to learn and what services do they wish they could refer patients to? Doing 6 months in inpatient psychiatry as an optional part of a rotation doesn’t really prepare you for dealing with the majority of mental health issues in the community.

Depression Detectives was a user-led citizen science project that ran between March and September 2021. It brought together people with lived experience of depression, and researchers who study it, as EQUAL partners. The aim was to get researchers listening to and working with non-scientists and put lived experience at the heart of research.

It was a public engagement activity as part of an MRC funded research project. It’s was collaboration between Edinburgh Neuroscience and public engagement practitioner Sophia Collins and her team.

Volunteers took part in online conversations with researchers studying depression,  to find out what science knows about depression, and how science found that out. They were also a chance for researchers to find out what people with lived experience wanted to know, and what insights we have, from our different perspective.

Members also came up with questions that we wanted science to answer, discussed methods to do that and ran a small piece of research together with researchers.

How did it work?

People took part in Depression Detectives who had experienced depression, or who worked or volunteered with people experiencing depression. The project was organised via private Facebook groups which did not appear on members’ timelines.

If you want to get updates on this project or our future work, please subscribe to our mailing list below:

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[This project is now finished, but we will leave these posts here as a record of what we did]

We’re really excited to announce that Depression Detectives is starting today, and you can now join the group and get stuck in.

We’re looking for people who have experienced depression in the past (with or without a diagnosis) or who work or volunteer with people with depression. No research background needed! Participants will get to quiz researchers studying depression, come up with questions we want science to answer, and run a research study together with researchers.

[To take part, people read a participant information sheet and answered a few questions about themselves. We then send them the link to join a private Facebook group, which is where the project was based. Only other group members were able to see posts or who else was a member.]

We would love to have as many people involved from the beginning as possible, but new people can also join at any point during the project, so please do continue to share with anyone who might be interested.