Background In 2016, the Research Institute (RI), Primary Care and Health Sciences, Keele University, UK, celebrated 10 years of Patient and Public Involvement and Engagement (PPIE) in research of musculoskeletal and other long term conditions. Our Research User Group (RUG) with over 90 members with a range of long-term conditions, actively work with research teams on studies. Many of whom have been involved in ten studies of different inflammatory conditions. We provide two case studies: 1) CONTACT: a trial comparing the effectiveness and side-effects of two commonly-used drugs (Naproxen and low-dose Colchicine) to treat acute gout in primary care; 2) A qualitative interview study with people with rheumatoid arthritis (RA) who had attended a nurse-led review clinic, which included identifying people at risk of anxiety and depression.
Objectives To describe how PPIE helped shape the design and delivery of the CONTACT and qualitative interview studies.
Methods 1) For the CONTACT trial, two RUG members with experience of gout joined the Trial Steering Committee. Another seven RUG members formed an advisory group to provide the patient perspective on trial procedures.
2) For the qualitative interview study, a group of eight people with RA from a local rheumatology centre (Haywood User Group) commented on the documents for the ethics application and met to discuss data analysis and dissemination.
Results 1) In the CONTACT trial, RUG members made a difference by:
Commenting on the trial design and acceptability of the drug intervention
Helping to produce clear and user-friendly information sheets for participants in the trial.
Provide practical advice regarding how participants were recruited
Future RUG involvement will include helping to interpret the trial findings planning further dissemination and discussing future research studies.
2) In the qualitative interview study, the PPIE group:
Contributed to the development of readable patient questionnaires for use in the clinic
Offered their perspectives on the interpretation of the qualitative data
Helped develop a leaflet to inform patients about mood problems related to rheumatoid arthritis and where help could be sought
Contributed to the establishment of an RA annual review clinic at the local hospital
Advised on the dissemination of results to a lay audience
Generated ideas for a study about the delivery of RA annual review clinics in primary care, supporting a related grant application
Conclusions Both studies demonstrated the wide-ranging benefits of PPIE input throughout the research cycle of identification, designing, managing and disseminating research. The RI will continue to involve patients with long-term conditions in studies for the benefit of the wider patient community.
Acknowledgements We thank all of our Research User Group members for their valuable time and contribution to the RI's research. CONTACT was funded by the NIHR School for Primary Care Research. The RA qualitative study was funded by the Scientific Foundation Board of the Royal College of General Practitioners and the Haywood Foundation. KD is part-funded by a NIHR Knowledge Mobilisation Research Fellowship (KMRF-2014–03–002). CCG is part funded by the NIHR Collaborations for Leadership in Applied Research and Care West Midlands.
Disclosure of Interest None declared