Putting lived experience at the heart of research - NIHR School for Public Health ResearchNIHR SPHR

Featured image Putting lived experience at the heart of research

This blog has been produced as part of the Public mental health newsletter

When talking about public mental health research, the key word is ‘public’ – without asking and involving the public to a meaningful extent, research becomes assumption. That’s where McPin comes in.

McPin – championing lived experience expertise

The McPin Foundation is a small charity on a mission to improve everyone’s mental health through research, informed and directed by lived experience expertise.

We want the value of lived experience of mental health issues to be upheld and embraced, which is why we put it at the heart of all our work. We explore what it means to be an expert, valuing lived experience alongside professional practice and research skills.

We are all about meaningful involvement – paying people for their expertise, establishing research teams that employ people with mental health issues, developing collaborative research methods and more.

In our work, when we say involvement, we mean that the people with lived experience of a research topic directly shape the research. Participation can mean that individuals take part in the research, for example, by answering questions and supplying data.

Based in London but working internationally, this year we have celebrated 10 years of centring lived experience in research.

Our work

Research – we deliver our own projects and partner with other organisations on commissioned research, such as the SPHR Public mental health programme.
Evaluation and measuring impact – we help others understand the difference they make and how to demonstrate their impact. For example, Birth Companions – evaluation of the impact of the Birth Companions Community Link Service that provides support to vulnerable pregnant women and new mothers living in the community in London. Work Well – evaluation of Work Well, an employment support project in South London boroughs of Lambeth, Lewisham, and Southwark.
Public involvement – we have extensive experience involving lived experience experts from a wide range of demographics including age, ethnicity, geography, & sexual orientation from supporting Patient and Public Involvement (PPI) strategies to setting up advisory groups, and many other aspects of PPI.
Training – we provide training on how to approach peer research, public involvement, co-production and more.
Hosting – if you’re a mental health fundraiser looking for a home, we can host your project so you can focus on what’s important: raising awareness and resources for your cause.
Influencing work – we love working with others who share our values of improving and highlighting injustices in the mental health sector, bringing research evidence and recommendations to the attention of change-makers.

McPin is involved in a variety of research projects. Here are some examples of current and future projects:

PARTNERS2&3: We ran a webinar in June to disseminate findings from our PARTNERS2 and PARTNERS3 studies, which looked at developing better ways of supporting people with ongoing mental health needs within GP practices. We wanted to ensure lived experience had a high profile across the event and we also launched a new briefing paper.
CHOOSE: Following the launch of findings from the CHOOSE study, looking at young people’s mental health during the pandemic, we got a shout-out in the media. The study lead name-checked the contributions of the young people who advised on the study on BBC Radio 4. There is also a brilliant infographic that has been produced from the CHOOSE webinar which we supported.
10 for 10: This year we celebrate 10 years of McPin! We’re sharing ten resources which pull together what we’ve learnt from doing our work, from wellbeing in the workplace to co-production, co-research and lots more. Our Lived Experience resource is the first of our 10 resources to launch, and it’s full of insights, tips and challenges, relevant for any organisation.

Infographic shoeing young people's views You can find examples of our work as part of the Public mental health programme further down.

How we carry out our work

We use a range of methods in our work. Here are just a couple:

PPI (Patient and Public Involvement) or PI&E (Public Involvement & Engagement)
Co-production – an approach whereby all stakeholders work together. This may include academic researchers, peer researchers, practitioners and the wider public, sharing power and responsibility from the start to the end of a project – including the generation of knowledge – so that the outcome is equal, balanced and more meaningful.

Public engagement in the SPHR public mental health programme

What McPin did in the School’s second quinquennium (2017–2021)

In 2019, McPin was commissioned by SPHR to recruit a team of five peer researchers to bring a range of skills and lived experience to the research projects across England for the Public Mental Health (PMH) programme.

Working together, and supporting each other, they became involved in many aspects of the programme, from contributing to and editing papers to co-leading public consultations.

They also worked as an independent hub; for example, they ran a public workshop specifically to help determine the reasons for poor population mental health and led a PhotoVoice study on mental health and inequality.

What McPin are doing in the School’s third quinquennium (2022–2027)

Partnership working within the PMH programme has developed over time, and we now have a new strategy, which was launched in May 2023. The image below illustrates the strategy in layers and, in particular, highlights that peer researchers, community organisations and the wider public will be involved at all stages.

We have contributed to shaping and prioritising for next five years of research and the PPI coordinator is now overseeing and supporting project level PPI work, co-designing the PI&E charter and piloting a PI&E impact log, distributed to all research projects.

You can find out more about our early collaboration with SPHR on McPin public mental health project page for phases 1 & 2 and Phase 3.

If you’d like to find out more about specific PPI work in the PMH programme, you can read a summary we produced in 2022 for a study we were involved in, looking at what, where and how mental health and wellbeing services in community spaces work – ‘Co-location across the nation’.

We also have several blogs about our public mental health work, which often reflect on our lived experience:

COVID Life

We found ourselves in the unique position of working on public mental health during a public health crisis: we felt it was important to recognise and respond to this. We created Covid Life to document our experience of these times and reflect on what all of this means from a lived experience perspective. Discover some of the blogs, poems and creative expressions on our #IamPublicMentalHealth website.

Gillian Samuel, Senior Public Involvement in Research Coordinator: gilliansamuel@mcpin.org. Gillian’s role is to support research teams to develop and co-ordinate PI&E with special attention to diversify involvement, for example, through the engagement of community organisations, who make up the demographics of case study sites. This approach will ensure PI&E is embedded in localities or schools or workplaces depending on the research focus.