Bringing the voice of lived experience and community learning into research

Posted by Angela Broadbridge, Peer Research Lead, The Young Foundation (former Research and Evaluation Lead, Fulfilling Lives Newcastle Gateshead)

“There’s something really interesting in our data here, we don’t quite have the full picture, let’s talk to some people to puzzle it over more.”

This is something I hear myself or the team at Fulfilling Lives Newcastle Gateshead (FLNG) say really regularly. We’re an 8 year National Lottery Community Fund learning programme working to improve the lives of people facing multiple disadvantage and build a trauma-informed approach within the services that supports them. We have a wealth of data from supporting over 250 people locally, and we work with a team of Experts by Experience, people with lived experience working to bring about change across the systems they have been through, using their voices to be heard across different platforms.

Fulfilling Lives Newcastle Gateshead Experts by Experience Network co-design session

As the programme has developed our relationship with Fuse has changed and connections have grown, we now do much of our ‘puzzling over’ with Fuse colleagues! I joined Fuse as an associate member back in 2017 when I took up my post as research and evaluation lead for FLNG. I attended Fuse Quarterly Research Meetings to build up my contact base and learn from others operating in this interesting space between frontline practice and research and learning. As I began to see frontline practitioners come into those sessions, I invited some of our own frontline staff to join me to share their experience of working with people who have experienced complicated and challenging circumstances and struggled navigating systems.

I want to highlight some of our learning from building collaborative relationships through and with Fuse researchers, as this has proved to offer new platforms for the voice of lived experience not just to be heard in research, but to set research agendas and co-produce work alongside academics.

In 2018, Dr Sheena Ramsey (co-lead of the Fuse Healthy Ageing Research Programme) invited me to attend a Research Hub Initiative event with Public Health England and I pitched a seed grant funding idea with support from Fuse researchers. Our recently published work on deaths in the multiple complex needs community, an issue our Experts by Experience network encouraged us to explore, was borne out of this funding. We have since joined up with Sheena again in a new study identifying effective and sustainable interventions to improve the oral health of adults with severe and multiple disadvantage. This collaboration works because Sheena and other researchers associated with the study took the time to really get to know our programme, and our Experts by Experience network. Sheena visited us at the men’s accommodation project where we were based a few years ago, met some of our frontline staff and also built trusting relationships with the network, introducing us to academic and practice colleagues to further situate our programme learning within Fuse.

Brainstorm - what makes a good collaboration?

While this was happening, Prof Susan Carr (Fuse Associate Director), set up a meeting with her team at Northumbria University and FLNG peer researchers to talk about projects we were both working on and to explore collaborations. She also arranged for our peer researchers to present early findings from their work to Prof Kevin Fenton, Public Health Regional Director for London, and it was at this point that we started to see how people with lived experience could be involved in local research and practice beyond being participants. There were opportunities for genuine collaboration and learning together.

Fast forward to early in the pandemic and we were involved in two applications to the NIHR Applied Research Collaboration (ARC) for the North East and North Cumbria. One of these applications was exploring food insecurity with Fuse Associate Dr Steph Scott, and Kevin Dobson and Keith Gibson from FLNG’s research team set about exploring our own programme data around foodbank use. Our Lottery funded programme is quite unique in that we have a personal budget fund to use to support people on the programme with anything from their basic needs, including food and accommodation, to more creative uses like buying art materials or enjoying an afternoon at the cinema. Once again we had a ‘there’s something interesting here’ moment.

I sent Steph an email saying:

“we’ve worked with 259 people in Newcastle Gateshead over 6 years and of these 127 individual client records contained a reference to food insecurity or food poverty. We had 14 unique cases, interestingly all female, whose notes had 10 or more references to food poverty and we can see from the notes frequent references to benefits being suspended, people not eating, or missing the foodbank opening times.”

Working with partners to surface system barriers and solutions

The conversation that followed led to us talking to the Experts by Experience about food insecurity, they were similarly enthused by the topic and together we made a successful joint application to the Catherine Cookson Foundation within Newcastle University for a project exploring mutual aid during Covid-19. Using our Lottery funded programme learning and building on our experience co-producing research in other projects with Fuse researchers we are working with a group of Experts by Experience who have developed research questions to start a listening exercise with their peers around their experiences of food insecurity, mutual aid and Covid-19.

This relationship with Fuse is evolving and changing, and it now feels like a relationship truly rooted in the principles of co-production. Our team report that they feel their frontline experience is listened to and helps shape research projects, and our peer researchers are involved in numerous projects and have the confidence to approach Fuse researchers to develop new pieces of work building on the issues that are important to them and their communities. As our programme comes to an end in March 2022, the Experts by Experience network is now thinking about its legacy, we very much hope to continue to build on this strong foundation for collaboration and learning.

Experts by Experience challenge us to create opportunities for them to take the lead in research

Posted by Ang Broadbridge (Research and Evaluation Lead) and Ged Hazlehurst (Expert by Experience) Fulfilling Lives Newcastle Gateshead

Earlier this year Fuse and Fulfilling Lives Newcastle Gateshead co-chaired a Quarterly Research Meeting sharing initial findings from a joint research project that explored the reasons underlying high death rates among people with multiple and complex needs (MCN). There we asked attendees to consider the findings and help shape recommendations.

Now as we write up the findings during the height of the Covid-19 pandemic, we are reminded that drug related deaths and MCN issues have been a public health crisis long before the pandemic, though it has drawn an even sharper focus on health inequalities at this time.

The findings from the study will be available in a forthcoming end of project report but in this blog we wanted to go behind the scenes with Experts by Experience to share our experiences of co-production in public health research.

Some background

So what is Fulfilling Lives Newcastle Gateshead (FLNG), and what are Experts by Experience? FLNG is an eight-year learning programme looking to improve the lives of people with complex needs and build a trauma-informed approach within the services that support people across Newcastle and Gateshead. Experts by Experience are people with lived experience of multiple and complex needs, and have vital things to say that can help shape the future of how systems and services work for their peers.

Co-producing research

Co-production is bringing together the people using services and the people providing those services to share power and work collectively to design, develop or deliver improvements to them. This also involves seeing services and staff as agents for change and seeing people who use services as assets with skills, who in turn, gain from their contributions and move towards positive change. For example, Experts by Experience on the FLNG programme have developed training resources for Department for Work & Pensions staff raising awareness of MCN issues, which were rolled out across JobCentre Plus.

FLNG wants research to be genuinely co-produced and has invested in creating a National Vocational Qualification accredited peer research skills training package and local Peer Research Network. This is to support a shift from involvement led by professionals to an approach in which peers define the remit and research questions, leading on all aspects of the research design, delivery and dissemination.

Experts by Experience defining research problems

The beauty of the Fulfilling Lives programme has been our small team and the small caseloads; with at the most eight frontline practitioners each working full time with just 10-12 people. We work intimately with these people, building strong trusting relationships, getting to know their families, and being by their side through crisis.

Between 2014 and 2020 we worked with 267 people, during which time we experienced 27 deaths on programme. That is around 10% of the client cohort, so you can perhaps imagine the impact of that 10% on a small team who have been deeply involved in the lives of the people they have navigated through services.

We talked to our Experts by Experience Network about this and as the programme research lead I (Ang) was really wary about the sensitive subject matter and its potential for re-traumatising. My thinking was challenged when the Experts Network were really passionate about deaths in their community and told us they were already talking about it, often without much support, so not to shy away. Then they challenged us to think about how our co-production and peer research offer could dig deeper to explore this issue. We asked Experts by Experience to help us explore what it would look like for them to take a peer-led approach to this work. They really helped shape the ethics process, for example they told us to look within their Network for participants, as we could guarantee good support for people to discuss any issues that emerged out of participation. In doing so they, the Experts by Experience, identified the topic for this project.

What was the feedback from our co-produced research event? 

When we met for the Fuse QRM the purpose of the session was to study the initial findings gathered from the series of focus groups we ran exploring MCN deaths. It was interesting then that the feedback we received from the event, asking people’s views on what we found and what was surprising, clustered around co-production in research. This suggests that this research has the potential to challenge beliefs about the involvement of people with lived experience in public health research:

• People were surprised by the extent to which Experts by Experience were able to take on such a difficult subject, and;
• People were surprised by the normalisation of death within our Expert by Experience community. 

It is our hope that this acts as a springboard for more and better involvement of people with lived experience of multiple and complex needs in public health research. We have explored a sensitive and challenging subject with Experts by Experience who challenged us to create opportunities for them to take the lead. We hope that as our Peer Research Network grows, other researchers can build on the peer research model we utilised in this study to shape their own research projects.

FLNG is one of twelve programmes linked across England funded by the National Lottery Community Fund, looking to influence the system nationally. A Core Partnership of Changing Lives (lead partner), Mental Health Concern and Oasis Community Housing lead the programme’s activity, for more information visit http://www.fulfillinglives-ng.org.uk/


Images courtesy of http://www.fulfillinglives-ng.org.uk