The Ideas Fund was set up in 2021 to test new ways of supporting communities to work with researchers on ideas related to mental wellbeing. Since then it has funded projects in Hull, Oldham, North West Northern Ireland and the Highlands and Islands of Scotland.
James and Anna are from two projects involved in the Fund. Both have first-hand experience of collaborating with researchers to produce community-led research. We sat down with them to see what they made of their experience so far, the challenges and breakthroughs, and what advice they’d give to other groups interested in collaborating with researchers.
Content warning: The following conversation contains references to themes of mental health and addiction that some individuals might find upsetting.
First, could you tell us a bit about your projects and what motivated you to start them?
Anna: Safe Space Inverness is a youth-led participatory research project created by the Inari Collective, to develop ideas for a safe space for young people aged 16-30 from underrepresented groups in Inverness. What motivated me to start it was working with young people with lived experience. I worked as a trainee therapist, and all of my clients were queer, neurodivergent and struggling with their mental health. Through listening to them, I realised that talking therapy wasn’t necessarily the best setting for young people to express themselves – they don’t always have the language to explain how they feel. I also have my own personal lived experience, of growing up being unaware of my own neurodivergent traits and struggling with my mental health. Both of these experiences made me excited about working with a researcher, to create safe spaces for young people.
James: I have deep rooted experience in the area that I now work in with OSHI. Similar to Anna, I had neurodivergent traits and undiagnosed depression and anxiety, which led me to abusing alcohol and cocaine. I became very poorly. I found myself in ambulances all the time and I was in and out of hospital. I experienced the stigma associated with serious mental illness and addiction, and partly because of that stigma, combined with systems that aren’t fit for purpose, I fell through the gaps. Falling through those gaps could have ended my life. But I came through the other side by the skin of my teeth. And over a period of years, I’ve transformed from being sick and dying to being happy, joyous and free. And I thought to myself, I don’t want to be the only one that made it. Why can’t we have higher success rates? That’s why I set up OSHI, to support people through addiction and recovery.
What’s the experience of being part of The Ideas Fund been like for you?
Anna: I came across The Ideas Fund and it felt like it was a ‘right time right place’ kind of meeting. Filling out the application was cathartic. The ethos of the Fund is that it’s very grassroots and rooted in the community. I saw the need in the community of young people I worked with, and I had an idea for what we could do about it. We’re now at the point where we’re piloting the prototype of a safe space. Without the Fund, I don’t think we would be anywhere near where we are now.
Part of the package of support from The Ideas Fund is also the Development Coordinators, who are locally-based and offer tailored support to groups like us. Our Development Coordinator, Lewis, was invaluable at taking our ideas and putting them into actionable steps.
I agree. The big difference with The Ideas Fund is that it’s about relationships. Whenever I’ve gone for funding in the past, I’ve never felt equal in the relationship. I’ve always felt like the recipient. But my experience of the Fund has been a breath of fresh air. You get a chance to harmonise and synchronise the ideas that the community are having, and you get a lot of support from the people behind the Fund, who really want to see change in society.
And how have you found collaborating with researchers?
Anna: We met a researcher that felt like an amazing fit, because they researched safe spaces and gender and arts in the community, which was the kind of expertise we really needed. A huge part of our project is also wellbeing and mental health, and we were missing that element, but then we found a second researcher through someone in the project.
It’s been a great experience working with the researchers. It’s been great to have someone with that methodical way of thinking, because we have lots of ideas and excitement. We’ve managed to build a relationship within the team where we can be very honest and supportive of each other.
James: Before The Ideas Fund I’d done a research project with OSHI already, and was looking to do another stage. I approached various academics, but very quickly realised my place in it. I’d done the primary research in the hospital with the clinicians, but after weeks of discussion a researcher said to me ‘we can do stage two and we’ll give you one hour a week at minimum wage, and we’ll do the research.’ And I thought, that doesn’t sound great. This is our research. The relationship was rubbishing me, because I was non-academic and had lived experience. The balance of power was very uneasy. The Ideas Fund really did change that, and the relationship I’ve had with the researcher through the Fund has been far more equitable.
The confidence level of people in our community has really grown, because we’re in the drivers’ seat. We don’t have to ask Jason, our researcher, where we should go as a project, we can talk to him and have a two-way conversation. We’ve come up with so many ideas together, not just for this project but also for other future projects. Our relationship has flourished and turned into a real friendship.
That said, collaborating with academic institutions has definitely had its challenges. Part of our research involved a survey of our community, and we were constrained by the Ethics Committee in terms of the questions we were able to ask. We reached an impasse and went with the best we could. But some people in the community fed back that the way the survey was written didn’t give enough room for expression. I understand there’s some wider research going on at the University, to challenge some of the ethics processes. At the moment the process is that you fill out the ethics form, it’s looked at in isolation and then you get a response a few weeks later. There’s no back and forth. We need ethics, of course. But if we could have had a bit more conversation and co-production in the early stages, that would have been great.
“It’s been a great experience working with the researchers. It’s been great to have someone with that methodical way of thinking, because we have lots of ideas and excitement.”
From your experience, what value do you think community-led research has?
Anna: For us internally the biggest value was the mutual learning between researchers, peer researchers and the team. Externally, it was the exposure to the opportunities we wouldn’t have had otherwise. For example, collaborating with other Ideas Fund projects, attending the Community of Practice sessions and learning from other projects. Another important aspect is a sense of empowerment of the community. Our young peer researchers not only improved their skills in creative research but also gained confidence in leading the project.
James: Similar to Anna, we saw the value that our community brings to the research. We have a steering committee and I was empowered to tell them that their experiences, their lives, their thoughts, their ideas are what we need, are what is important here. The point is that we’re steering the researcher.
The other thing we’ve noticed is access. We’ve just done a questionnaire as part of the research. Originally, we attempted to reach people via official channels, like getting in touch with public health authorities, company heads and paid employees in the field that have access to people in our community through distribution lists. This yielded almost nothing. So I individualised it and personally contacted 1,000 people over the last few weeks, via their preferred channel, whether it be phone, text, in-person WhatsApp... My mind has been blown, because I’ve had hundreds of responses. I had to individualise it. We discovered that together. Having an email address to contact someone isn’t real access – not the kind I have. Because I know them on a deep, personal level. We’ve gone through stuff together.
“Having an email address to contact someone isn’t real access – not the kind I have. Because I know them on a deep, personal level. We’ve gone through stuff together.”
Are there any future opportunities this experience has unlocked?
The Inari Collective just started a 12-week accelerator programme, to scale us up as a business and work out our business model and marketing strategy. To be able to do that and to think about Inari Collective as a sustainable business is amazing. I can’t get over the opportunities we’re coming across. We wouldn’t have that without the support and the money from The Ideas Fund. It’s opened up a lot for us as a project. We’re really hoping that this can grow into a stand alone social enterprise, with our own building, our own events. We have so many ideas.
James: We’ve been working with a digital media researcher and tech expert. So one of the opportunities that has come up is having access to AI tools and giving them a go. I’ve now been using tools like ChatGPT, for support with structuring emails, and that has cascaded down to my team and my community, so people are becoming more efficient and more empowered.
Other opportunities have come up for myself and my team to have some paid work around Hull University and there’s potential for OSHI to open up a meeting on the University campus to support students. This is something we explored years ago and it never came to anything, but now it’s being re-looked at.
I’m full of gratitude for all of the opportunities that have come up because of The Ideas Fund. The key words for me are access and confidence. That’s what The Ideas Fund has given us.
“I can’t get over the opportunities we’re coming across. We wouldn’t have that without the support and money from The Ideas Fund.”
Interested in learning more about The Ideas Fund? Watch this space for more of our upcoming conversations from the people involved from across the Fund so far. You can also get in touch with the team at email@example.com for more information.
Finally thank you to Julia Fausing Price from The Social Change Agency for the support in writing up these conversations.