Patient and researcher perspectives on facilitating patient and public involvement in rheumatology research

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• What should research charities focus their spending on?
• How can people with RA influence the research agenda?
• What are the best ways for scientists to feed back to patients, relatives and carers about research findings? 2 | BACKGROUND PPI in all stages of the research process is advocated by funding bodies and policy makers as a way of enhancing the relevance, quality and efficiency of research (INVOLVE, 2012;National Institute for Health Research, 2015). The input of PPI partners has been shown to enhance the design of clinical trials (Brett et al., 2014), development of patient-relevant research ideas (Bergsten et al., 2014), agenda setting (De Wit, Abma, Koelewijn-van Loon, Collins, & Kirwan, 2013) and developing appropriate patient-reported outcomes for clinical trials (de Wit, Kvien, & Gossec, 2015). Evidence suggests that patients identify different treatment priorities to clinicians (da Silva et al., 2010;Kwoh & Ibrahim, 2001). This reinforces the case for involving patients in the design of research to ensure that their priorities are addressed, and to improve the quality and impact of that research.
Patients have been involved in rheumatology research at each of the three hubs prior to the inception of RACE; therefore, the project offers a unique opportunity to bring together patient partners from each of the hubs, to share experiences and best practice. Details of these groups can be found in Table 1.

| RACE PATIENT CONFERENCE
The conference was attended by two patient research partners from Birmingham, five from Glasgow and six from Newcastle, 11 of whom completed a questionnaire prior to the conference, to describe their existing experience of research involvement. The participants' previous involvement in research activities is summarized in Tables 2 and 3. Patient partners who attended the conference had limited previous research involvement but were enthusiastic to become involved, as evidenced by their attendance and comments at the conference.
Respondents were asked to describe any benefits they had experienced or anticipated from involvement in research. Similar responses were obtained from those who had previous experience of PPI and those who had none. These can be summarized as: • A better understanding of current research • An increased knowledge of the disease and how to alleviate symptoms • An opportunity to support research and ensure that it is targeted at patient needs • Improved dissemination among patient groups • Access to the latest research  (Gerlag et al., 2012); the development of patient questionnaires  and patient-initiated research to determine why people with symptoms of rheumatoid arthritis delay seeking help (Tiwana, Rowland, Fincher, Raza, & Stack, 2015).

Glasgow
The Glasgow Patient Involvement in Rheumatology Research (PIRR) group is in the early stages of its development with patient representation on clinical trial steering groups and further recruitment of patient research partners under way. Identification of possible patient partners has been through the National Rheumatoid Arthritis Society (NRAS), Arthritis Care and clinicians. There has been informal patient involvement for a number of years, while research is a standing item on the agenda of the Patient Engagement subgroup (which includes patient representatives) of the Rheumatology Managed Clinical Network of NHS Greater Glasgow and Clyde.

Newcastle upon Tyne
The Newcastle Public Involvement in Musculoskeletal Services (PIMS) Group held its first formal meeting in March 2015. This joint project between Newcastle University and the Newcastle upon Tyne Hospitals NHS Foundation Trust has two main objectives: • To involve service users and carers in improving the quality of services and making services more responsive to the needs of the individuals who use them • To involve service users and carers in different aspects of research projects at Newcastle upon Tyne Hospitals NHS Foundation Trust, providing a forum for researchers and the public/patient community to formally engage with each other Researchers also discuss future projects and feed back results to existing patient groups, including the North East Sjögren's Syndrome Association (NESSA) and the local NRAS group. A concern was raised by patients that those who become involved with research may not be representative of the wider patient group, and often develop extensive research expertise, leading to a possible loss of perspective. It was agreed that it would be important to identify ways to widen access to research involvement in order to mitigate this.