Development Of A Public And Patient Involvement (Ppi) Research Network For People Who Have Rheumatic Conditions

Background: Public and patient involvement (PPI) improves quality and relevance of research (1). PPI is advocated by policy makers and funding bodies and is supported by EULAR (2). Arthritis Research Limerick (ARL) is a partnership between researchers at the University of Limerick and clinicians at University Hospitals Limerick. PPI representatives have been involved in ARL projects, however no formal PPI network had been established prior to 2020. The need for a formal PPI network to collaborate with ARL was identified by both ARL and patient representatives. This need arose from a joint ambition to promote meaningful involvement of the public and patients in ARL projects and to develop a platform through which researchers and PPI representatives could collaboratively set research priorities. Objectives: The aim of this project was to create a formal PPI network to engage with people living with rheumatic and musculoskeletal diseases (RMDs) and their families and to identify collaborative research opportunities between ARL and PPI representatives. Methods: A face-to-face PPI seminar was planned for October 2020. The seminar consisted of speakers from ARL providing an overview of research projects and a World Café research ideas session. Funding was obtained through a competitive, peer-review funding call from the PPI Ignite group at the University of Limerick to support the PPI seminar. The funding application was a joint application between ARL members and a PPI partner (iCAN - Irish Children’s Arthritis Network). The seminar was advertised through national patient organisations (iCAN and Arthritis Ireland), social media and ARL research networks. Results: Due to Covid-19 public health restrictions the PPI seminar was held virtually. The ARL PPI inaugural seminar was attended by N=19 researchers and people living with RMDs. The seminar speakers included ARL researchers and a PPI representative. The World Café event was modified to adapt to the virtual seminar delivery. Research ideas were noted by the seminar organiser and summarised for attendees at the end of the research ideas and priorities session. An ARL PPI mailing list was set-up post seminar as a means of communicating with seminar attendees and will serve as a formal PPI network for ARL. Research updates and opportunities will be communicated via this formal network to people living with RMDs and researchers alike. Conclusion: This was the first PPI seminar organised by ARL in collaboration with a PPI seminar, and has led to the creation of a formal PPI network. Delivery mode of the PPI seminar was changed due to Covid-19 public health restrictions. This change may also have impacted engagement and attendance at the PPI seminar, given that virtual events are not accessible to all of the RMD population. Future PPI seminars will consider a hybrid approach of face-to-face and virtual attendance, to enhance accessibility. A formal PPI communication network has been established. Future work will focus future collaborative opportunities between the PPI panel and the ARL group, including project development, co-led research funding applications and joint research dissemination. References: [1]INVOLVE. (2012). Briefing notes for researchers: Involving the public in NHS, public health and social care research. Retrieved from www.invo.org.uk 7th January 2020. [2]de Wit MPT, Berlo SE, Aanerud GJ, et al (2011). European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the Rheumatic Diseases 70:722-726 Disclosure of Interests: None declared