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Nottingham experts win prestigious award for putting patients at the heart of their research

Tuesday, 17 May 2022

Researchers from the Institute of Mental Health at the University of Nottingham have won a national award, recognising their work in involving participants in their research to improve care.

The National Institute for Health and Care Clinical Research Network (NIHR CRN) collaborated with two prominent mental health charities, the McPin Foundation and MQ: Mental Health Research, to run the prestigious annual Mental health research service user and carer involvement awards 2022. These awards celebrate the work of those dedicated researchers and service users who go above and beyond to design research and involve participants to improve care.

The overall winner of the award was “Narrative Experiences Online” (NEON) - a research study led by experts at Nottingham. The study looks at whether reading or listening to other people’s online stories of personal recovery can improve quality of life for people with psychosis.

The NEON programme evaluates whether having online access to people’s real-life stories of recovery from mental health problems can be helpful for people affected by mental health problems. The different NEON studies are aimed at: those with psychosis related mental health problems, those with non-psychosis related mental health problems and people who self-identify as informal carers for those affected by mental health problems.

I am delighted that our collective efforts to ensure mental health lived experience informs all aspects of the NEON Study have been recognised”.
Professor Mike Slade, Chief Investigator of NEON and Professor of Mental Health Recovery and Social Inclusion, from the School of Health Sciences at the University of Nottingham

The judging panel were particularly impressed by how the NEON study team had truly permeated service user and carer involvement into every phase of the study, from inception to dissemination and their inclusive recruitment process.

The NEON team have been able to interweave user and carer involvement into every stage of their studies through their Lived Experience Advisory Panel (LEAP), who have been integrated into all relevant study activities.

An innovative aspect is that the job description for all NEON research and administrative roles include lived experience of mental health problems as either desirable or essential, and all interview panels to recruit staff include a LEAP member.

The LEAP members were instrumental in outlining how the NEON studies could recruit inclusively suggesting that the NEON collection should include a minimum number of people with protected characteristics to avoid harm through under-representation.

Through the participation of people with lived experience, two NEON studies recruited to time and target. LEAP members consistently refined recruitment materials, producing a splash page that addressed all the queries of potential participants. LEAP members also acted as paid community champions, encouraging participation from people who would not usually taking part in clinical trials.

LEAP have heavily influenced how the study findings have been disseminated to an academic and public audience. Their members co-authored 13 academic papers out of the 22 papers published by the NEON programme and have written blogs summarising the academic papers and discussing lived experience.

The NEON team

Lea Milligan, CEO of MQ: Mental Health Research, said: “Recognising the importance of involving the very people who are most-impacted by the outcomes of studies is a key part of MQ’s approach to research. This is why we are so delighted by the incredibly high calibre of applicants for this year’s NIHR, McPin and MQ Research Awards.

“Designing research, with meaningful involvement of service users and experts by experience in study design, implementation and dissemination is so important if we are to really create a positive effect on people’s lives.

“The winning study, NEON, impressed us all with their active involvement of carers and service users in all phases of the study. Congratulations to them and the runners up EN-CAMHS.”

Phil Evans, Deputy Medical Director, of the NIHR CRN said: "As we emerge from the pandemic the mental health of us all has never been more important. The NIHR Clinical Research Network (NIHR CRN) is delighted to recognise the innovation and demonstrable benefit of effective engagement with people with lived experience, service users and carers in the winning application (NEON) and the runner-up (EN-CAMHS).They have both capably demonstrated how effectively incorporating service user and carer experience can shape a research study and add immeasurably to the research that is being undertaken. Many congratulations to them both."

The NIHR funds, enables and delivers world-leading health and social care research that improves people's health and wellbeing and promotes economic growth.

Story credits

More information is available from Professor Mike Slade in the School of Health Sciences at  M.slade@nottingham.ac.uk  

Charlotte Anscombe - Media Relations Manager - Faculty of Medicine and Health Sciences
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