Mental health research is changing and the public is leading the way. In recent years, the role of patients, carers, and communities in shaping research has evolved from passive participation to active partnership.
This shift reflects a growing recognition that lived experience offers insights no dataset can replicate. National frameworks like the NIHR’s UK Standards for Public Involvement have helped formalise this change, encouraging researchers to embed collaboration, transparency, and inclusivity at every stage. Research is no longer something done to people but something done with them.
This ethos is central to the NIHR Mental Health Translational Research Collaboration (MH-TRC) Mission, hosted by NIHR Oxford Health Biomedical Research Centre (OH BRC). The Mission brings together leading research centres across the UK to accelerate mental health treatment discoveries. At its core is a commitment to Patient and Public Involvement, Engagement and Participation (PPIEP) as a strategic driver of innovation, relevance, and impact.
Across MH-TRC demonstrator sites, PPIEP is embedded in governance, planning, and delivery. In Liverpool, the Mental Health Research for Innovation Centre (M-RIC) has the support of ten lived experience representatives in its research workstreams, with over 30 public advisors contributing to workshops, events, and specific strategic projects. Their input has shaped everything from research questions, how data is handled, study materials and public-facing campaigns like “Count Me In”, which encourages wider participation in mental health research.
In Birmingham, the Mental Health Mission Midlands Translational Centre is harnessing digital innovation to improve early psychosis and depression care. Projects such as EPICare and DECODE have been co-designed with dedicated Lived Experience Advisory Groups, whose members have influenced everything from what data is collected, by whom, how it is shared, app features to language choices. These collaborations ensure that these tools are relevant and user-friendly.
The Mission also prioritises inclusion, particularly in underserved communities. By supporting and investing in locally led PPIEP initiatives, we ensure that research reflects the diversity of the UK population and responds to local needs.
Industry partners are increasingly recognising the value of public involvement too. Through industry engagement with PPIEP, understanding the needs and perspectives of people with lived experience help shape trials and products that are grounded in real-world needs. This connection fosters transparency and ensures that innovation is not only technically sound but meaningful. The MH-TRC Mission is helping bridge the gap between public and industry, creating opportunities for collaboration that benefit everyone.
As Dr Lesley Booth, MH-TRC Mission PPIEP Lead, explains:
“One of the most transformative aspects of our recent work has been the meaningful involvement of people with lived experience. Lived experience insights have helped us develop our approach, and in particular to identify and address barriers to participation in mental health trials, particularly among underserved communities. PPIEP is not just a ‘nice to have’, it’s essential to making research relevant, inclusive, and impactful. By co-producing studies, we’re improving access and ensuring that research reflects real-world needs. As we move forward, lived experience will remain central to shaping trials that are not only scientifically robust but also genuinely person and patient centred.”
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