Ab1693-Pare the Evolving Role of Patients as Authors at the Annual European Congress of Rheumatology

Background: An increasing number of congresses are encouraging patients (inclusive of caregivers and patient organisation representatives) to present and publish research 1. The European Alliance of Associations for Rheumatology (EULAR) Annual European Congress of Rheumatology has facilitated such opportunities for >20 years via the 'People with Arthritis/Rheumatism in Europe (PARE)' track. Objectives: To quantify patient-authored publications accepted or presented at the EULAR Annual European Congress of Rheumatology. Methods: The EULAR abstract archive (https://scientific.sparx-ip.net/archiveeular) version 1.02 was searched on 13 January 2024 for publications (2001–2023) using the 'session' list. Patient authors were identified by the following criteria: patient organisation affiliation; patient research partner (PRP) affiliation (including 'patient', 'carer', 'caregiver', 'advocate', 'PRP', 'lay', or 'consumer'); or known EULAR PRP. Publications were included if they were listed as a PARE track session (abstract-only, poster, oral presentation, or invited speaker presentation), and had ≥1 patient author. Publications were excluded if a patient author could not be identified in the byline. Results: From a total of 71,164 abstracts available on the EULAR abstract archive, 749 (1.1%) met the inclusion criteria. Abstracts were identified from 173/2671 (6.5%) sessions, which covered a range of topics, as well as PARE abstract sessions and poster tours. The top four included sessions with the most patient-authored abstracts were: 'patient information and education' (n=88), 'PARE abstract session' (n=62), 'best practice campaigning' (n=36), and 'arthritis research' (n=23). Three of these top sessions aligned with the 2024 abstract submission criteria for the 'patient perspective (PARE) track'. There was an upward trend in the number of patient-authored abstracts at the Congress between 2001 and 2023 (Figure 1); the lowest and highest number of patient-authored abstracts were at the 2003 (n=2) and 2017 (n=52) Congress, respectively. Study limitations include search scope (abstracts listed under scientific or health professionals in rheumatology sessions may have been excluded), and functionality of the abstract archive system to extract additional data. Conclusion: Despite a growing presence of patients at the EULAR Annual European Congress of Rheumatology, the number of patient-authored abstracts at the Congress remains low (~1%). Patient authorship of research presented at the Congress should be encouraged, in parallel with more accurate and transparent reporting of patient-authored abstract metrics. REFERENCES: 1 Oliver J, Lobban D, Dormer L, et al. Hidden in plain sight? Identifying patient-authored publications. Res Involv Engagem 2022; 8, 12. Acknowledgements: NIL. Disclosure of Interests: Simon Stones Share options in Envision Pharma Group, a medical communications agency that works with pharmaceutical companies., Employee of Envision Pharma Group, a medical communications agency that works with pharmaceutical companies.