AB1693-PARE THE EVOLVING ROLE OF PATIENTS AS AUTHORS AT THE ANNUAL EUROPEAN CONGRESS OF RHEUMATOLOGY
Authors: S. Stones
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> 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 &gt;20 years via the 'People with Arthritis/Rheumatism in Europe (PARE)' track. <h3>Objectives:</h3> To quantify patient-authored publications accepted or presented at the EULAR Annual European Congress of Rheumatology. <h3>Methods:</h3> 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. <h3>Results:</h3> 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. <h3>Conclusion:</h3> 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. <h3>REFERENCES:</h3> [1] Oliver J, Lobban D, Dormer L, et al. Hidden in plain sight? Identifying patient-authored publications. Res Involv Engagem 2022; 8, 12. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> 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.