Co-production is talked about a lot. We have been part of the Lived Experience Advisory Panel (LEAP) within the National Institute for Health and Care Research Applied Research Collaboration Yorkshire and Humber (YH ARC) multimorbidity theme for several years, and we want to tell you what we think good co-production looks like, what makes our group successful and some of the things we have done.
Joining the LEAP and a leap of faith
We all have previous experience of working in co-production, not all of which has been positive. It takes a leap of faith to join a new group to see what it will be like and what its aims really are. Our hopes for the ARC multimorbidity group were for our voices to be properly heard; to advise on, suggest and feedback on mental health research; to ensure research methods and ideas were relevant, accessible and ethical; to bring our own real life experiences and advice to help the projects; and to have all our different types of knowledge be valuable.
Experiencing something new
As time went by, we got know each other better and became part of an established group. This group felt different to some of the other ones we had been a part of and that became an important difference to us. We are a collective group, a community. We feel appreciated, safe, validated and welcome. If we feel down or are struggling before the meeting, we find that the meeting is something to look forward to, and something that lifts us up. We often leave the meeting feeling much better than when we arrived.
What makes ‘real’ and meaningful co-production?
We do not believe it is right to say something is co-produced if the co-production is not done properly or meaningfully. So what do we do differently – how has our experience and contribution been used in a way that added real value? We all brought to the LEAP a diverse range of expertise, and found that each type of expertise was valued and appreciated. This means that we can confidently say that the projects we got involved with or advised on had a greater understanding of the needs of service users. We also felt empowered to say no to any projects or offers that did not align with our goals and we were supported in this within the group and by the facilitators of the group. Our voices were not edited by anyone and group preferences were always respected. Any power dynamics and imbalances were acknowledged and worked with.
Making an impact and influencing research
We are proud of the work we have done in the LEAP and invite you to look at the links we have included here. Some of this work was done within our LEAP meetings and some was done as additional opportunities linked to areas of interest that we wanted to be involved with.
| Project | Link |
| Supporting the development of research into how social prescribing groups managed in lockdown | https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0301550 |
| Research Priority Setting exercise | https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/hex.14044 |
| Development of a MOOC (massive online course) | Developed into: |
| Attending PPIE training | Delivered by Yorkshire and Humber NIHR https://arc-yh.nihr.ac.uk/our-approach/involving-people/ |
| Development and testing of the Research Methods Course | Delivered jointly by Sheffield Health and Social Care, Yorkshire and Humber NIHR ARC MPM; Sheffield Centre for Health and Related Research Short Course Unit; RDS (now Research Support Service, RSS) |
| Smoking Cessation and SMI consultation | https://arc-yh.nihr.ac.uk/research/projects/improving-support-for-people-with-severe-mental-illness-to-quit-smoking-comparing-a-bottom-up-with-a-top-down-quality-improvement-approach/ |
| Supporting research into levels of co-production in service delivery | https://onlinelibrary.wiley.com/doi/full/10.1111/hex.13788 |
| Supporting the Creative Minds photo-elicitation project | Currently being prepared for publication |
| Supporting the Creative Minds Logic model research | Design complete, LEAP will be involved in delivery of focus groups |
| Designing and producing a poster and leaflet (including a Canva workshop) | See below |
Who are we and how to work with us
Steve Dexter: ‘I was one of the original members of the LEAP and have contributed to all the projects the LEAP has supported’.
Jo Doll: ‘I am a queer disabled artist and creative producer. I have a diverse art practice that is often related to my experience of identity, illness and isolation making pieces in a variety of mediums perpetually unified in emotive expression. Alongside my art practice, I am a creative researcher, collaborating with institutions and independent scholars to advance accessible dissemination.
When I first joined the group, I admit my expectations were not that high. The jaded battle worn mental health patient part of me was on full alert during the initial meetings, waiting for the undelivered promises and patronising tokenism. Since that first chat with the team, I have found myself regularly looking forward to LEAP meetings – in a way I haven’t with other projects. The care and consideration present in every session is the biggest compliment I can give the group. Every member shares with kindness, patience and always with sincerity, even when the subject matter is difficult the group feels safe. After years of being part of research, consultations and all manner of lived experience panels; the LEAP actually delivers.
In a novel twist for healthcare related research, the advisory panel actually is consulted for advice! As a group we have been part of shaping a learning pathway for non-academic researchers, created an information poster for an NHS Trust conference that celebrated coproduction and accessibility, consulted on resources for healthcare professionals and more. I am proud to be a part of the group, every member makes us as strong as we are and the range of knowledge we bring is unique to our own experiences but united by a passion for implementing
change via equitable involvement between institution and
community.’
Ian Fairbank: ‘I have been a service user for 45 years but it was only after I took early retirement in 2009 that I decided to try to give back and got myself elected to the Council of Governors at RDASH. Someone at Grounded Research passed on Lizzie’s email and explained she was setting up a research group. I was involved from the outset and am constantly amazed by and proud of the brilliant articulate nature of our members. I live with my wife and daughter who have always been massively supportive.
Gary Hellewell: ‘I havebeen involved in various research projects since 2016 because of my lived experience in mental health issues and other morbidity issues. My involvement with the leap includes passing on my experienced knowledge onto the academia through research.’
Debs Teale: ‘I have been involved in the LEAP for a number of years. I initially got involved through my work in the NHS, but when I left there, I continued to be a part of it. It felt a genuine group and our voices have always been listened to and supported to be able to be open honest and transparent (something that I don’t often find in other groups) It is genuine co-creation, co-production and co-design throughout the process. This has not just been for this LEAP group, but others that they have brought in to get our opinions in. I have also attended training sessions that have helped me not just with the LEAP but with other parts of my life and the other jobs I do. As being an active member of the group it has given me the confidence to set up 2 LEAP groups (and currently working on the 3 rd ) for other organisations with the knowledge skills and openness that is shown at this LEAP. I see the LEAP as a great example of lived experience and involvement/engagement being done correctly.’
Lindsey Bishop-Edwards: ‘I am a qualitative researcher in Mental Health and bring research support to the group. I help the LEAP members to move ideas forward, support with research skills and to do any background work that can contribute to the research of the group. It is a warm, open and respectful group to be in and feels like a significant move forward in creating meaningful co-produced projects.’
Lizzie Taylor Buck: ‘I am a researcher and a psychotherapist. I work in the NHS three days a week, and the University of Sheffield Mental Health Research Unit two days a week. At the Uni I work on NIHR YH ARC MPM theme, leading the Social Prescribing workstream. I have chaired the LEAP since the start of the ARC and have learnt so much from the LEAP about coproduction and inclusion. I still have a lot to learn!’
Abby Constantine: ‘I’m Abby, the administrator to the LEAP. I really enjoy being a part of the group because It means I get to see both sides of research, to experience how co-production happens and I benefit from a sense of belonging to a longstanding team of wonderful people to work with.’
You can contact us with work and co-production opportunities by emailing: Lizzie (E.Taylor-Buck@Sheffield.ac.uk)