Milestone moment for Keele’s Research User Group

Written by Laura Campbell, Support Worker (User Involvement in Research and Implementation), Keele University. Pictured below right with RUG member and PPIE volunteer Robert Taylor.

A decade on from its tentative first steps into Patient and Public Involvement and Engagement, the Research Institute for Primary Care and Health Sciences at Keele University recently celebrated the ever growing success of its Research User Group (affectionately known 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.

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 implementation.

With a dedicated PPIE team (Adele Higginbottom, Steven Blackburn, Carol Rhodes, Laura Campbell and Robert Taylor), the RUG continues to play a large part in the development of Institute’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.

Above from left to right: Steven Blackburn, Maarten de Wit and Clare Jinks

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 themselves.

Using interviews with RUG members, photographs taken over the years and poignant music and words, the video took the audience through the RUG’s 10 year history before underlining the reasons why the voices of patients and the public need to be heard in all aspects of research and implementation.

Above: Phillipa Yeales (left) and Magdalena Skrybant (right).

The lyrics to Emili Sande’s ‘Read All About It’ were chosen as the soundtrack to the video. Emeli’s motivational words fitted perfectly with the history and raison d'etre of the Research User Group, describing how important it is to speak up and speak out; “You’ve got the words to change a nation, But you’re biting your tongue, You’ve spent a lifetime stuck in silence, Afraid that you’ll say something wrong ….We’re all a little different, there’s no need to be ashamed.”

Speakers on the day included Simon Denegri (below), who is the National Director for Patients and the Public in Research at the NIHR and Chair of INVOLVE. Simon discussed PPIE over the last ten years and emphasised that patients and the public should be valued and supported during the entire research process.

Above: Simon Denegri.

Representatives from NIHR, Arthritis Research UK, Primary Care Consortium, CRN, School for Primary Care Research, 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, in which members of the RUG chose their favourite three posters, announcing the overall winner (Annabelle Machin) at the close of the event.

The day finished with an exciting overview of the future – Carolyn Chew-Graham spoke about the continued development of mental health research, Paul Campbell talked about his projects working with children and young people and 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.