Emma Adams is a NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) Mental Health Fellow and previous NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellow. She has been working with Experts by Experience from Fulfilling Lives Newcastle Gateshead & #HealthNow Newcastle on a NIHR SPHR funded study Exploring and understanding access to community-based mental health and addiction services in Newcastle and Gateshead.
What is co-production? This is a question I often find myself grappling with as a public health researcher working within homelessness and mental health. The National Institute for Health Research (NIHR) recognises that the definition is not always clear and there is “no one size fits all approach”. Their guidance on co-producing research suggests that we need to focus on principles (such as sharing power and including all perspectives and skills) rather than specific techniques. After spending the last 18 months using co-production approaches to understand and share research findings, I agree that “no one size fits all”.
I’ve been working closely with five Experts by Experience to understand (lack of) access to community-based mental health and substance use services during the COVID-19 pandemic for people experiencing homelessness in the North East. Recognising that none of us knew how best to co-produce our study, we set out with a healthy dose of willingness to try, acceptance we would probably make mistakes, and a learn as we go attitude.
Muddling my way through co-production has been one of the most rewarding and challenging experiences. I won’t claim it was all sunshine and rainbows, there were plenty of days that felt a little grey and stormy. I would do it all over again though, (albeit with a few minor tweaks) as the richness working with Experts is immeasurable.
In the spirit of shared learning, I thought I would share some of my learnings for others considering co-production:
- Co-create ‘rules for engagement’. One of the biggest things I wish I had done was to try to create a set of common grounds for the meetings and communication at the beginning. It is important to do this together and early on to create a shared understanding of expectations. Throughout the co-production process, review these rules to ensure everyone continues to feel comfortable with the format of their engagement and involvement.
- Feedback, feedback, feedback. No one is perfect and no meeting ever goes as well as we hope. Provide different ways for people to give feedback and ask for feedback often. These could include: private messages on Zoom, WhatsApp messages, emails, surveys, and individual meetings. Also be clear and specific about how you will action any feedback.
- Recognise and define your own boundaries. Perhaps the one I struggled with the most was creating a safe and supportive environment without overstepping or minimising my role as a researcher. Simple things can help with this: start each meeting by explaining the aim of the day and how activities help achieve the overall research aim; have a final project meeting to recognise accomplishments and give clear guidance around what happens next; have a plan in place for signposting if extra support is needed.
- Acknowledge the emotional toll. Working with Experts by Experience, particularly around sensitive topics, can impact your personal wellbeing if you do not have access to appropriate support to debrief after challenging situations. It is not uncommon for people to share their personal experiences or for issues to arise during co-production – having designated time and space to debrief or get support is key to preventing burn-out.
- Be honest and open. Let everyone know you are not perfect and will make mistakes, but that you are there to learn as much as they are. When you inevitably have to navigate difficult conversations, work together to find the best way to address situations.
- Clearly articulate the benefit of their contribution. ‘Experts by Experience’ emphasises that in co-production the people with lived experience are ‘Experts’ in their own ‘Experience’ and they bring skills and knowledge equally if not more important than what a researcher brings to a study. When people provide input, be specific on how this has shaped your study.
I imagine I will still have to cross many hurdles as I continue to co-produce research – there are always things to improve on. If you have been trying to co-produce your work with people with lived experience of homelessness, mental ill-health, and/or substance use, I would love to hear from you!
Emma’s study ‘Exploring and understanding access to community-based mental health and addiction services in Newcastle and Gateshead‘ is NIHR School for Public Health Research (SPHR) ResNet funded. Outputs, including two co-produced visuals, from the study can be found on the study site. Initial findings from Emma’s study have now been published in the International Journal of Environmental Research and Public Health. You can contact Emma at email@example.com
Emma and Experts on the study wrote a blog post for the Fuse open science blog about their experience and since then have designed visual representations of findings (used in the blog above) with the help of Siân from More than Minutes, which were also shared in a recent blog.
This project is funded by/supported by the National Institute for Health Research (NIHR) School for Public Health Research (SPHR) (Grant Reference Number PD-SPH-2015-10025). Emma was supported by the NIHR SPHR Pre-doctoral Fellowship Funding Scheme (Grant Reference Number PD-SPH-2015). Emma is now supported by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) (NIHR200173). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.