By Laura Campbell, Support Worker for User Involvement in Research and Implementation, iPCHS
A decade on from its tentative first steps into Patient and Public Involvement and Engagement, the RI recently celebrated the ever growing success of its Research User Group (affectionately known in-house as the RUG). Held at Keele Hall on September 22nd, the RUG’s 10 year Celebration Event brought together patients, researchers, charity representatives and PPIE champions from all over the UK and Europe to recognise the group’s remarkable achievements and forward thinking in PPIE.
Continuing to grow from strength to strength, the RUG is a shining example of PPIE, which has a meaningful, positive and lasting effect on both the quality of research at Keele and the lives of the patients who get involved.
It’s hard to imagine that when it was first created back in 2006, PPIE in research was a rarity. But thanks to the determination of staff at the Research Institute (particularly Elaine Hay, Rhian Hughes, Pauline Ong, Clare Jinks, Krysia Dziedzic and Claire Ashmore) to incorporate PPIE into its research projects, the Research User Group now boasts over 80 members, who work on over 70 projects in a variety of conditions - arthritis, mental health, musculoskeletal health, long term conditions and
With support from our dedicated PPIE team (Adele Higginbottom, Steven Blackburn, Carol Rhodes, Laura Campbell and Robert Taylor), the RUG plays a large part in the development of the RI’s world leading research. Above all, its success is down to each and every one of its committed and hardworking members who have the courage to share their most difficult experiences in a bid to improve healthcare in the future.
The day was split into three sections – celebrating achievements over the past 10 years, discussing how we maintain good standards of PPIE and finally, looking to the future.
One of the highlights of the event was a special video, produced and edited by Laura Campbell with support from Adele Higginbottom, Robert Taylor and the RUG members. The video uses interviews with RUG members and photographs taken over the years to take the audience through the RUG’s 10 year history and remind us of the reasons why the voices of patients and the public need to be heard in all aspects of research and implementation. Emili Sande’s ‘Read All About It’ was chosen as the moving soundtrack to the video. The motivational lyrics fit perfectly with the history and raison d'etre of the Research User Group. Describing how important it is to speak up and speak out, the song had a huge impact and struck a chord with many members of the audience.
Speakers on the day included Simon Denegri, National Director for Patients and the Public in Research at the NIHR and Chair of INVOLVE, who discussed PPIE over the last ten years and emphasised that patients and the public should be valued and supported during the entire research process. He commended the work of the PPIE team at Keele over the last 10 years. Representatives from NIHR, Arthritis Research UK, Primary Care Consortium, CRN, School for Primary Care, CLAHRC and a host of local groups were present.
As the event continued, several Primary Care Sciences research and clinical staff spoke about the various ways in which the RUG has created meaningful partnerships with patients, carers and the public within the centre, to design and deliver high quality research which is relevant to patients and their families.
The breadth of PPIE at Keele was showcased with a poster competition. Members of the RUG selected their favourite three posters and the overall winner (Annabelle Machin) announced at the close of the event. There was also the return of ‘Ethel and Agnes’ – a comedy sketch performed by Carol Rhodes and Adele Higginbottom based on the use of jargon and acronyms in research.
The day finished with an exciting overview of the future. Carolyn Chew-Graham spoke about the continued development of mental health research and Paul Campbell talked about his research projects working with children and young people. Krysia Dziedzic presented the future of research implementation, unveiling for the first time the LINK Working Party (Lay Involvement in the Mobilisation of Knowledge) a newly-formed group which focuses on involving patients in translating research evidence into practice.
It’s true to say that the future of PPIE at Keele is bright and is rapidly expanding on an international scale in both research and implementation projects. Ten years ago, no one could have anticipated the success of the RUG – a ‘jewel in the crown’ of the Research Institute for Primary Care and Health Sciences at Keele University.
This blog was created to keep healthcare professionals, researchers, methodolgists, and patients up to date with the latest primary care research. For more information about the Research Institute, visit our website; keele.ac.uk/pchs
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