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Who asks the questions and who gets to answer?

Person in wheelchair looking at laptop with friend. Photo by Marcus Aurelius

Who asks the questions and who gets to answer?

How co-production in research can be radical plus a new collaboration between Think Local Act Personal and the Centre for Care. A commentary by Kate Pieroudis, Senior Co-Production Advisor, Think Local Act Personal (TLAP).

I’m one of those art and science people, a strange fusion of self-confessed ‘nerd’ who spent days poring over research papers and tinkering in the lab gathering data about differences in eating behaviour between men and women as part of a Neuroscience degree years ago; but I’ll also happily spend hours gazing at art in galleries and museums, seeking meaning and wanting to understand how artist’s lives shaped their work.

What both art and science have in common is curiosity – asking questions and seeing things differently, they challenge the familiar and seek to understand the reasons and context behind things, constantly evaluating if there is a “better” ways of doing things, and better for who? In challenging the status quo, we start to understand what being human really means. Embracing both the artistic inclination to challenge assumptions and scientific ways of seeking answers, this blog highlights the transformative potential of co-production, bringing different groups of people together as an approach to explore better ways of conducting research and understanding the complexities of people.

Anyone who knows me knows about my love of bringing together people who wear many hats and have different parts to what they ‘do’.

During the pandemic, this curiosity let me to become a peer researcher and co-author on Mind’s Jigsaw 2 Project. As people with lived experience of mental health issues and of peer support, we became researchers to create a picture of what peer support exists for people from marginalised groups. We explored how community-led groups – led by and for people from marginalised groups – are supporting people’s wellbeing. We had challenging and reflective conversations about which groups to focus on, collectively deciding to focus on Black people and people of colour (BPoC), LGBTQIA+ communities, and young people (18-25).

Early on, we said we didn’t want a paper that sat getting dusty on a shelf. We wanted a living, breathing document that would kick-start conversations, challenge assumptions that funders and people in positions of power in the mental health world were making and support them to try new approaches when the ‘way we do things’ meant people were being harmed and dehumanised.  ‘Research as activism’ one of us said. The word peer itself shows people who aren’t researchers by background are trained and supported to carry out research and valued on an even footing with academics and researchers. 

It was a brilliant experience – four of us with varying degrees of research knowledge, working alongside Mind staff asking each other challenging and reflective questions, deciding together what’s important and shaping and writing the research. I’m thrilled to bring some of this learning to a new project TLAP and the National Co-production Advisory Group (NCAG) are working on with researchers at the University of Sheffield and part of the Centre for Care looking at the role of technology in living well – not “here’s a piece of wearable technology that we think might solve your issue, and by the way it’s the only thing on offer, PS we want to know what you think” -shifting this more towards “what does a good life look like and what’s the role of technology in making this happen?”.

It will look at the way people use digital technology in care and support arrangements and systems, how people use technology creatively to make it work for them to live good lives and how they use it within their networks (people close to them and in their communities) How and in what contexts can digital technologies support particular parts of wellbeing- ‘subjective wellbeing and wellbeing linked to relationships and being part of society, sometimes called  ‘good caring relationships’?

The key thread of co-production is involvement throughout: at the start – before a problem, idea (or service) is agreed, coming to an agreement on what needs to happen and how, building in opportunities and roles for people with lived experience in the ‘doing’, offering training and support, all the way to evaluation looking at whether something did what it set out to do.

In research, it’s about boldly valuing people as equal partners in the quest for knowledge and understanding, skilling them up to participate and not being defensive when they challenge practice. It’s a radical shift away from the idea that people are problems that need to be solved to looking at how people navigate technology to make it work for them and to reflect this, many things will be different to traditional research.

The way information is gathered in this project will be different, we’ll be using diaries, taking photos, recording voice notes on phones, and drawing. These are called ethnographic methods; people capturing information and responding to questions in real-life situations.

We’re also offering a range of options and ways people can be involved, like helping to plan and design the research through a Design and Methods Group which is a smaller group of people working closely with researchers to keep an eye on how the project is progressing.

We recently met with researchers to look at the ‘ethics proposal’ which is a process that shows how we have thought about the wellbeing and safety of participants. An early challenge was being ‘a co-applicant’ – naming people with lived experience as leaders on research, which people with lived experience will be. Another was an assumption we wouldn’t involve people with lived experience who lacked capacity. This was flagged as excluding some people and we discussed creative ways that carers and people supporting those lacking capacity could feed in their views.

Dr Kate Hamblin, Senior Research Fellow at the Centre for Care said:

“Meeting with NCAG to talk through the ethics was hugely valuable. It really gave me pause about some of the assumptions in the draft application- some reflected practical considerations and parameters, but others need more thought and discussion. It also made me think about the challenge of presenting the broad area of focus for a research project without at the same time blocking dialogue about its direction and approach. The topic for the project emerged from previous discussions with Centre for Care Voice Forum Members (who are people with experience of social care) and prior research and it made me wonder about how co-production can be layered – where previous discussions with people with experience of care and support are built on in ways that draw in different voices and perspectives but at the same time, we don’t re-start with a blank page at each new interaction. I’m really looking forward to working with TLAP and NCAG moving forward not only on the research itself but working through some of these complexities around co-production.”

Jennifer Pearl, Member of NCAG said:

“I love technology and am pleased to be part of this project. I’m able to bring my wealth of lived experience of disability as well as my wide knowledge of using tech to create a good life to help shape the research.  Having people with lived experience as a key part of this project enables better research and as a team will are all able to learn from each other.”

We’ll be sharing plenty of insight into how this research develops. This will be in the form of blogs, podcasts and graphics people with lived experience will co-create showing what people are telling us and what we’re learning along the way. The idea is to inspire other researchers to try new ways of involving and co-producing research with people with lived experience so their ideas and experiences can shape the world as we know it.

Stay connected with TLAP by signing up to their mailing list here.

About the Author

Kate Pieroudis profile picture

Kate is the Senior Co-production Advisor for Think Local Act Personal. Before that she worked for Social Care Institute for Excellence (SCIE) and The Stroke Association. In her spare time she is a keen DJ.

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