2014 Conference

Abstract: Brighton and Sussex University Hospital Trust (BSUH) is a clinically research active acute hospital on the south coast of England. BSUH conducts research across a wide variety of specialities including: cardiology, cancer, digestive diseases and hepatology (the branch of medicine that incorporates study of liver, gallbladder, biliary tree and pancreas), HIV and sexual health, immunology and infectious disease, neurology, ophthalmology, paediatrics and neonatology, rheumatology and surgery and trauma.

Despite a wealth of research investment and high level of activity across the Trust it has been recognised that patient and public involvement (PPI) in research needs to be given a higher priority by placing patients at the very heart of its research strategy.

This paper presents the challenges and opportunities of establishing a PPI strategy and infrastructure within the Trust while hearing the patient voice in the R&D activities undertaken in BSUH.

We will present plans to establish PPI user panels for BSUH R&D and our aspirations for streamlining PPI along the lines of the Trust’s research specialities and activities. We will highlight lessons learned from other research-active Trusts and Clinical Trials Units (CTUs) across the country and pin-point areas that require refinement as we come to a more complete strategy for improving PPI. Members of the BSUH General PPI Panel and the Young People’s Advisory Panel will present their experiences of contributing to and shaping these developmental PPI initiatives.

Acknowledgement:
PPI activities at BSUH are supported by the Brighton National Institute for Health Research (NIHR) Clinical Research Facility (CRF).

Authors

Barron ~ Duncan

Duncan Barron is Senior Research Fellow in Patient and Public Involvement (PPI) at the University of Brighton and PPI Lead for the National Institute for Health Research (NIHR) Research Design Service (RDS) in the south east. Duncan has recently been seconded to Brighton and Sussex University Hospital Trust (BSUH) to help create and establish a PPI strategy for research across the whole Trust.

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Bell ~ Archie

Archie is 16 years old and has been part of the Brighton and Sussex University Hospital Trust Jaffa Panel since Easter. At the moment Archie is in his first year of college doing AS levels. In the future he hopes to study medicine at university.

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Bishop ~ Aidan

Member, Brighton and Sussex University Hospital Trust Jaffa Panel. Aidan is 17 years old and enjoys skiing, basketball, classic films and TV shows (eg Cheers, The Godfather, Rocky, etc). He is studying A Levels in maths, chemistry, biology and psychology at Sixth Form College and hopes to pursue a career as a surgeon.

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Bisshop ~ Garry

Garry Bisshop has had many years involvement in the Cancer Research Network and has commented on numerous research projects from a lay perspective. Garry is able to bring a lived experience of cancer to bear on research and has recently joined the General Lay Review Panel at Brighton and Sussex University Hospital Trust.

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Carlin ~ Teddy

Member, Brighton and Sussex University Hospital Trust Jaffa Panel. Teddy Carlin studies Politics and Social Policy at the University of Brighton and has experience of working as a Young Men's Health Champion on the Right Here research project, which explored young people's experiences of accessing mental health services.

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Cotterell ~ Elliot

Elliot joined the the Brighton and Sussex University Hospital NHS Trust (BSUH) Patient and Public Involvement (PPI) Panel (or ‘Jaffa’) panel following his involvement with The Right Here Project, The Mental Health Foundation, and Innovation labs, where through his own lived experiences of depression, he helped organise well-being activities for Young People aged 16-25. Elliot has a desire to improve awareness and create opportunities for young people’s involvement with the services that are designed for them. Elliot has enjoyed the atmosphere and opportunities that have arisen from clinicians asking lay members’ insight into the best way of providing information that patients need in order to be fully informed about research. Elliot is currently completing his application to return to University to study BioMedicine after dropping out due to mental health issues.

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Hamer ~ Victoria

Victoria Hamer grew up in Ireland, under the spell of Wexford Festival Opera, worked at Glyndebourne Opera and at the Royal Academy of Arts, was a Care Worker and in 2011 had a stroke. She has given talks, written a Stroke blog for the Independent online, appeared on videos about her experience of Telemedicine, has been depicted in a cartoon “From the Front Line” shown at the Sick! Festival in Brighton and been filmed by Latest TV. She attends the Stroke Clinical Governance Group as the patient member, and has joined the Brighton and Sussex University Hospital NHS Trust’s (BSUH) lay Patient and Public Involvement (Jaffa) panel which gives an early input into research which is still at the early planning stage.

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Keville ~ Jenifer

Member, Brighton and Sussex University Hospital Trust Jaffa Panel

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Pezaro ~ Shana

Member, Brighton and Sussex University Hospital Trust Jaffa Panel

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