Utilising patient power to evolve research implementation
Blog written by Robyn Till, Communications Officer, Keele University
Friday 13th October was anything but unlucky for the Research Institute’s (RI) Patient and Public Involvement and Engagement (PPIE) Team, who were joined by over 80 patients, stakeholders and researchers for their annual Research User Group (RUG) event. This year’s event entitled ‘accelerating the impact of research using patient and public involvement’ was a huge success, leaving all those involved feeling rather inspired to make a difference to the way the RI implements research into practice.
Keele Hall’s ballroom was buzzing with enthusiasm as participants made introductions or caught up over their morning coffee and cake. Delegates could be found talking to representatives from Arthritis Research UK (ARUK), the School for Primary Care Research (SPCR) and the National Institute for Health Research (NIHR), or chatting to our very own Dr John Bedson, who was showcasing the Keele Pain Recorder (a mobile app designed by Keele’s Research User Group, aimed at improving pain management).
RI Director, Professor Elaine Hay, who was stepping in for Professor Krysia Dziedzic (Director of the Impact Accelerator Unit and PPIE) set the scene for the day. She welcomed the development of the Impact Accelerator Unit over the past 12 months and recognised the positive changes this has made to PPIE - which is now an integral part of Implementation as well as research. Promising it wasn’t something straight out of a Star Trek movie, Elaine summarised that the unit was about proactively managing the process of implementing research findings into health care by using patient power. She congratulated all of those involved in PPIE over the years for all their hard-work and dedication, which put PPIE on the research map.
Our keynote speaker took the stage next - Sophie Staniszewska, Professor of Public Involvement and Engagement at Warwick University. Sophie highlighted that studies often fall victim to ‘research waste’, where findings are either not implemented into routine healthcare or take up to 17 years to be implemented. But, she feels that the promising concepts of co-production and knowledge mobilisation can go a long way in improving the research t0 implementation gap.
So what does she mean? Quite simply, it’s ensuring that clinicians, economists, academics and patients are all involved in the co-production of each element of the research cycle. This includes study design, research output design, development of guidelines and implementation activities. This can be done through a ‘knowledge mobiliser’ or ‘knowledge broker’ - a champion that bridges the gap between all of these structures.
Research jargon out the way, it was time to hear from the stars of the show, our patients.
Magdalena Skrybant (left), a member of our LINK (Lay Involvement in Knowledge Mobilisation) group, highlighted that as a patient involved in the research process, it can be really satisfying to see that research published in a journal, but fast forward ten years and it’s still not been translated in practice. Aware that processes are slow, she reiterated the importance of patients in improving the design and delivery of research by providing their patient insights and experiences, whether it’s helping to create publications that signpost patients to the right places, or helping disseminate a mobile app that a researcher has developed. Patricia Callaghan, also provided her insights as a LINK group member as she pulled on a few heart strings, taking the audience through her journey to becoming a member.
Breaking up the day with a bit of light comic relief, we welcomed back our two favourite Grannies, Ethel and Agnes. Ethel and Agnes (played by two budding actresses, and members of the PPIE team) helped demonstrate how daunting the process can be joining the research - and now implementation - world as a non-academic. This year they were joined by a member of RUG on stage, who played the part of Ethel’s husband (below).
Following a morning which focussed on how patient power needs to be better utilised to improve implementation, the afternoon looked at how Keele has successfully done this, through the JIGSAW-E (osteoarthritis) and STarT Back (back pain) implementation projects. The role of Patient Champions in the European wide JIGSAW-E project were showcased by Implementation Project Manager Nicki Evans and LINK member John Murphy, whilst Knowledge Broker Laura Campbell and Consultant Physiotherapist / NIHR Knowledge Mobilisation Fellow Kay Stevenson presented the global progress of STarT Back through a novel ‘Mastermind’ format.
The LINK group was mentioned many times throughout the day. Created over a year ago, the LINK group is made up of people with a passion and enthusiasm for improving healthcare using the best possible research evidence. This group is tasked with providing guidance to the Impact Accelerator Unit project team by drawing on their knowledge, contacts and experience of the NHS and healthcare practice.
Sue Ashby, PPIE Implementation Fellow, has been researching the work of the LINK group and the impact of the patient voice in implementation over the last 12 months. Along with RUG members Katie Tempest, Ruth Haines and John Haines, who helped Sue with her research project, Sue explained that although there is a lot of literature out there that talks about how we can meaningfully involve patients in research, it isn’t telling us how it has done in implementation. Therefore Sue has researched how to use PPIE in implementation by reviewing case studies, literature, interviewing patients, researchers and clinicians at Keele, and observing LINK meetings and she presented her initial findings at the meeting.
It wouldn’t be an RI event without some audience participation, and Helen Duffy, NHS Partnerships and Engagement Manager and co-director of the Impact Accelerator Unit was on hand to facilitate. Delegates were asked to think about how they, as an individual could improve research implementation.
The consensus around the room was that using networks, exploiting communication methods such as the media, improving clinician’s mind-sets, educating healthcare professionals and ensuring consistency across healthcare practices would make a real difference.
All in all, the event was a great success and it was fantastic to see so much enthusiasm for PPIE from not just the patients, but from the academics and stakeholders as well. The work that has been done by the team has put PPIE on the research agenda and ensured that it has become best practice. Now it’s about opening up a dialogue and changing perspectives of all those involved in research by emphasising the importance of patient power.
Visit the Research Institute's PPIE website.