Research User Group newsletter 2019 RUG newsletter FINAL version 30.10.19 | Page 4

4 RESEARCH HIGHLIGHTS INCLUDE The INCLUDE study aimed to develop a detailed yearly review based in primary care for people with inflammatory arthritis (Rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, polymyalgia rheumatica and giant cell arteritis). People with inflammatory arthritis are more likely to develop mood problems, heart disease and poor bone health (osteoporosis). These problems are common, but may not be identified or treated, which can reduce the quality of life of affected people.  Within the INCLUDE study, people with inflammatory arthritis were invited to attend a nurse appointment at their GP surgery for a detailed review consultation, aiming to identify and treat these linked health problems. Study findings have been discussed with PPIE group members, who have suggested that a range of primary care professionals could conduct the INCLUDE review if this was rolled out into routine practice. They have also proposed that a follow-up telephone call could help to reinforce advice given to patients during the review consultation. PPIE members have also given advice on how to share the results of the INCLUDE study, via social media posts, presentations to arthritis groups and communication with national arthritis organisations. Research User Group member Mike Brooks said: "The INCLUDE study is a programme of work which I found informative and insightful. To be able to discuss additional issues such as mood, depression, anxiety and fatigue with a nurse specialist could assist in the overall management of inflammatory conditions. Valuable consultants’ time could be saved if these reviews were undertaken by specialist nurses. Being able to contribute to a research project about which I have first-hand experience as a rheumatoid arthritis patient was a great opportunity. I have long been an advocate of patients taking more responsibility for managing their diseases and involvement in this study enabled me to potentially help shape this philosophy for the future." TRIAL STEERING COMMITTEES  RUG Steering Group member Carol Ingram has been involved in several Trial Steering Committees (TSCs). These committees provide the independent oversight of a trial and so it is vital that there is a public perspective included. She commented: "I think that being involved from the very start of the journey of the project is very important, as you can help to advise or steer the project in the right direction. Having input from the word go has helped lots of projects to get the funding that is needed for their work to continue. Plus you feel valued that what you are saying is being listened to." If you would like to get involved in a Trial Steering Committee then please let us know. PATIENT AND PUBLIC INVOLVEMENT AND ENGAGEMENT ANNUAL EVENT "Improving the quality of PPIE" Friday 8th November 2019 rsvp: [email protected] 01782 734834