Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.

In 2015, a pilot nurse-led rheumatoid arthritis (RA) annual review clinic was established at two community hospitals in North Staffordshire. People attending the clinic were invited to participate in a qualitative study exploring perspectives on case-finding for co-morbid anxiety and depression. A patient and public involvement and engagement (PPIE) group was arranged, with the aim of discussing aspects of data analysis and to seek advice on how to disseminate findings to patients. Participants with RA were recruited using a leaflet which was disseminated at a local hospital and sent to members of the Keele Research User Group (RUG).

A ground floor room with ease of access was arranged. As per INVOLVE guidelines, patients were paid to attend the meeting and offered travel expenses. A support worker from the RUG was present to facilitate discussion. Lay language was used throughout and contributions from all PPIE members encouraged.

Participants offered alternative perspectives on data extracts and gave suggestions for dissemination, for instance, through presentation to the Haywood User Group, a local group for patients with arthritis. People were keen for a patient information leaflet to be produced about RA and mood. This was co-written with PPIE group members and has since been available at the local hospital. Participants were sent letters highlighting the impact of their contributions.    

The PPIE group contributed to the development of further research ideas. Participants queried why the RA annual reviews had been based at a community hospital, and not within general practice, where patients would attend for long-term condition reviews. Several also felt the review would be beneficial to people with other inflammatory rheumatic conditions. These suggestions helped shape the research question for the INCLUDE study (1), which aims to examine the feasibility and acceptability of a nurse-led integrated care review for people with inflammatory rheumatic conditions, based in primary care.

Patient involvement in the INCLUDE study has been integral from the start. Members of the RUG group reviewed drafts of the grant application and gave suggestions for improvements, helping to secure funding. An initial PPIE meeting was arranged to explore patients’ perspectives on the co-morbidities that affect people with inflammatory rheumatic conditions and prioritise what could be undertaken within the review. Several members of the PPIE group for the original qualitative study expressed their enthusiasm to be involved in the INCLUDE study. To help ensure the PPIE group would be representative of those patients attending the INCLUDE review, people with other inflammatory rheumatic conditions were recruited using a leaflet, which was disseminated through social media, at a patient educational event, via rheumatology outpatient clinics, and to members of the RUG group.

Six participants with a range of inflammatory rheumatic conditions attended. An accessible room with convenient parking was arranged and patients were paid to attend the meeting and offered travel expenses. A RUG support worker helped to plan the presentation and was present at the meeting, throughout which lay language was used and global contributions encouraged.

On discussing priorities for the INCLUDE review, participants agreed that it would be important to discuss cardiovascular disease, osteoporosis and mood problems. Following patient feedback, questions about fatigue were included in study questionnaires.

Within the meeting, participants also also reviewed patient-facing documents for the INCLUDE study. They were able to advise on an appropriate length and complexity for study questionnaires and suggested that study invitation letters needed to explicitly highlight the potential benefits to patients of participating in the study. They also helped to develop a summary sheet to be given to patients at the end of their review, to outline a clear action plan. They gave suggestions for useful contact numbers which were listed on the reverse of the summary sheet. 

PPIE group members were keen to continue their involvement throughout the INCLUDE study, with one member of the PPIE group also joining the Trial Steering Committee. A letter was sent to participants thanking them for their contributions and outlining the impact of their involvement. Minutes of the meeting were disseminated to the INCLUDE team and outcomes discussed at study meetings.

PPIE participants were invited to a further meeting to discuss the content of topic guides for qualitative interviews with patients, nurses and General Practitioners involved in the INCLUDE study. During the meeting, participants suggested changes to several questions to make them more easily understandable. Additional questions were also recommended to help determine the acceptability of the review.

In order to optimise impact, participants suggested it would be important to start disseminating findings to patients at an early stage. The INCLUDE team have been invited to present to several local arthritis groups and also asked to take part in a patient event for World Arthritis Day (Oct 2018). At the event, leaflets on RA and mood co-developed with patients will be shared, posters on the impact of PPIE displayed and the public engaged in a discussion about the INCLUDE study.

RUG members have been involved in a multitude of research and implementation projects, and the PPIE team continue to monitor the impact of their contributions by asking researchers to document how patient involvement has shaped their study and to reflect on any potential improvements.

Involving patients in the analysis of one study, then using their reflections to shape a subsequent research question has facilitated continuity of patient involvement across two different studies, which will continue through further PPIE groups to discuss the INCLUDE study findings. Patients have reflected on the rewards of seeing their ideas translated into a research project. Enabling patients to see the impact of their contributions over time will encourage their future involvement in research, facilitate the recruitment of further PPIE members and crucially ensure that research continues to be relevant to patients. 

 1. Hider, SL, Bucknall M, Cooke K et al. The INCLUDE study. INtegrating and improving Care for patients with infLammatory rheUmatological DisordErs in the community; identifying multimorbidity: Protocol for a pilot randomized controlled trial. Journal of Comorbidity. 2018: 1-9.