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Championing lived experience voices in brain health research

On Saturday 20 April, we celebrated the importance of patient and public involvement (PPI) in research through our ‘Working together for better brain health’ event hosted in collaboration with the BRAIN Unit.

What is PPI?

PPI groups bring researchers and members of the public together to ensure that the voices of people with lived experience actively shape and inform the direction of research. This makes research outcomes more reliable, more relevant, and more likely to be used to improve health and social care services.

The event was also an opportunity for members of the public to network with researchers and PPI members to learn more about what getting involved in brain health research looks like, and why lived experience voices are an integral part of this.

As well as a guided lab tour, the day’s agenda included interactive talks from PPI members sharing their experiences of mental ill health or brain disorders and what getting involved in research means to them.

Anthony Cope, member of NCMH’s Partnership in Research group, also known as PÂR, shared how following 25 years in the biotech industry his life was turned upside down when he lost 18 months of his life to a breakdown. With his experience of several conditions including bipolar disorder and depression, he has found numerous ways to contribute to research including advising on grant applications with PÂR.

Lived experience is the most important part of the health research puzzle.

Dr Sarah Rees, PPI lead at NCMH, also interviewed Mustak Murza (pictured above) and Sienna-Mae Yates, who shared their experiences with their mental health and their roles with the UK Minds and Traumatic Stress Research PPI groups, respectively.

Attendees also heard from the BRAIN Unit director Professor William Gray, who was interviewed by NCMH PPI member Jacqueline Campbell about the working relationship of researchers and PPI groups:

Professor Gray said: “Getting the chance to go into someone’s brain and make a positive difference is such a privilege.”

It’s important that people who have these conditions have a voice on how these trials are conducted. They are advocates for continuing research in these areas.

Brain games galore

Throughout the afternoon, centres from across the Division of Psychological Medicine and Clinical Neurosciences at Cardiff University shared more about their research through interactive stands and brain-related games.

Researchers from the Neuroscience and Mental Health Innovation Insititute (NMHII) ran two interactive games for guests, including the opportunity to practise pipetting and guessing different animal brain sizes in a game called ‘Whose brain is it anyway?’.

Staff based in the Centre for Neuropsychiatric Genetics and Genomics demonstrated how the power of poetry can be used to express experiences of different mental health and brain disorder diagnoses through Cinquain poems.

There was also brain painting, Virtual Reality headset experiences, Pin the ball on the brain, and the ever-popular Stroop Mat.

We also asked guests to take part in our Paint a brain activity which demonstrated how different parts of the brain are responsible for different functions and processes, such as movement and memory.

Soapbox scientists

As well as hearing personal PPI stories, attendees were also invited to discover more about specific research areas in the division and pose questions to our ‘soapbox scientists’.

These short talks ranged from the genetics of treatment-resistant schizophrenia, the use of virtual reality (VR) in healthcare, and how memory can be impacted by mental illness.

NCMH Public Involvement lead Dr Sarah Rees reflected on the day:

The success of the day is a wonderful testament to the incredible impact our community of public members has had on research.

“What shone through all the stories shared is the passion and dedication that we are fortunate to be able to draw on, instilling optimism and a sense of belonging to all who attended – whether researchers or members of the public.

“This makes for a strong research partnership that is ideally equipped to continue to make a difference.”

Thank you to all our public and patient contributors for their invaluable contributions to a great afternoon.

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Ellie Short

Ellie is the Communications Officer for NCMH and the Centre for Neuropsychiatric Genetic and Genomics at Cardiff University.

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National Centre for Mental Health, Cardiff University, Hadyn Ellis Building, Maindy Road, Cardiff, CF24 4HQ

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