This blog has been published as part of the NIHR SPHR Public mental health newsletter
In this blog, Gillian Samuel (peer researcher from the McPin Foundation and SPHR Public involvement coordinator) tells us about public involvement and engagement in the programme.
I was once asked: “what advice would you give to a person who is considering becoming a peer researcher or public contributor?” My immediate response was: “be proud of your lived experience. Use it well and it can make a positive difference to both your life and the lives of others”.
For me, I had had a choice – either carry the heavy burden that my poor mental health imposed or put my experiences to good use and be set free. I chose the latter.
Since 2019, I have had the privilege of being involved in the NIHR SPHR Public mental health (PMH) programme. From those early days, much learning has taken place, and we are now seeing the fruits of our labour blossom into a programme that increasingly emphasises the importance of involving the public.
Now, as we embark on the third cycle of the School’s PMH programme (2022–2027), I am excited to discuss the new and evolving Public Involvement and Engagement (PI&E) strategy that will further amplify the voices of people with lived experience of poor mental health.
The launch of Public Involvement and Engagement – the new evolving strategy explained
Now marks an exciting milestone in our commitment to collaboration, equity, and inclusivity. The strategy aims to ensure that diverse perspectives are heard and incorporated into every stage of the research process. We recognise that involving individuals with lived experience, community representatives, and stakeholders is essential for producing research that truly addresses the needs and concerns of those affected by, or at risk of poor mental health.
Furthermore, we aim for projects to become autonomous in supporting PI&E. This could mean recruiting peer researchers who become embedded within teams, setting up advisory panels to help shape studies and reaching out to community organisations who reflect the diversity of the areas which our studies aim to serve.
As PI&E Coordinator, I aspire to be an anchor and mentor, working towards and advocating best practice. As studies evolve, I shall offer consistent support and guidance to academics, peer researchers and the wider public.
To support this collaborative approach, the PMH programme has forged partnerships with various organisations, including mental health charities such as the McPin Foundation, community groups and networks. These partnerships create opportunities for collective learning, knowledge exchange, and co-creation of research projects. By working together, we can break down barriers and ensure that everyone’s voices are valued and respected.
Using innovation and creativity to showcase voices of people with lived experience and from diverse backgrounds
In this phase, the PMH programme is harnessing innovation and creativity to elevate the voices of individuals with lived experience with a focus on those from diverse backgrounds. We recognise the power of personal stories, and we want to ensure that these narratives are shared in meaningful and accessible ways.
Using multimedia approaches such as storytelling, digital media, and art, we aim to provide platforms for individuals to express their experiences and perspectives. By doing so, we challenge stigma, foster empathy, and create a deeper understanding of mental health challenges and what these can contribute to research.
A recent example is a series of short video clips taken by me at the PMH Symposium in April 2023. This was an opportunity for peer researchers to appear in the moment, unposed and explain live on camera what it was like to be involved and contribute to a NIHR SPHR PMH event. Here are some examples:
Note that the several video clips made, edited and combined to make a 4 minute video. This was subsequently screened to an audience of more than 200 academics and public partners at the NIHR SPH Annual Scientific Meeting in May 2023. Watch the video below.
This emphasis on innovation and creativity not only showcases compassion but also highlights the courageousness of those who share their experiences.
Opinions and Comments from academics
Academics involved in the PMH programme have expressed their support for public involvement and engagement in mental health research. Here is an example from a video clip also taken at the recent PMH Symposium:
Two programme leads commented on the mini movie:
“You captured different perspectives and different voices in a nice way and this video will contribute to not only to share the experience of our public member contributors but hopefully inspire other researchers to do the same”
“It is really good to hear perspectives of public and academics of how the symposium was received, as well as hopefully encouraging us all in our PPI work going forwards”
Top tips and lessons
Throughout my journey, we have learnt valuable lessons that contribute to the success of public involvement and engagement initiatives. Here are some top tips for effective involvement:
- Early engagement – Involve the public from the earliest stages of research planning to ensure their perspectives are integrated throughout the entire process.
- Tailored approaches – Embrace diverse and inclusive methods to engage individuals from different backgrounds, considering their unique needs and preferences. This may include accessible communication formats or language translation services.
- Building trust – Establish and nurture relationships with community partners, community groups, and individuals with lived experience. Building trust creates a safe space for open dialogue and collaboration.
- Communication and feedback – Maintain regular communication with public contributors and peer researchers, ensuring that their feedback is sought and valued. Actively involve everyone in decision-making processes and provide updates on the impact of their contributions.
- Celebrate partnerships – Co-host workshops within the communities who have contributed; together, explore research findings together and share food to mark the end of a study. Commit to stay in touch for future involvement.
The NIHR SPHR PMH programme’s Phase 3 introduces an evolving Public Involvement and Engagement strategy that emphasises collaboration, equity, and inclusivity. By using innovation and creativity to showcase the voices of people with lived experience and from diverse backgrounds, the programme demonstrates compassion and courageousness. With the support and endorsement of academics, the programme continues to drive positive change in mental health research.
As we move forward, let us remember the top tips and lessons we have learned, ensuring that public involvement remains at the heart of our efforts to improve mental health for all.