OP0232-PARE CHILEAN NETWORK OF RHEUMATIC PATIENTS 2023 ACTIVITIES: HOW IPARE INSPIRED OUR WORK. PATIENT INFORMATION AND EDUCATION, BEST PRACTICES, GEOGRAPHICAL DIFFERENCES
Authors: G. Tobar Carrizo, D. Wiek
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> There exist great deficits in healthcare for patients with rheumatic and Musculoskeletal conditions across the world. Regarding Latin America, there is one rheumatologist per 106,838 inhabitants on average, in Chile it's 1 rheumatologist per 71.000 inhabitants on average. Official Chile data from 2023 say there are 98.000 RA, 21000 SLE and more than 4000 JIA patients. The health insurance covers only these 3 rheumatic diseases. Since 2015 certain biologics are reimbursed. IPARE is made up of members from Panama, the United States, South Africa, Ghana and ASOPAN, the Pan-American Network of Rheumatic Patients Associations represented by Chile. <h3>Objectives:</h3> IPARE's key aims are to connect, share, exchange, collaborate in the field of education, research, quality of care, congress and advocacy, thus to support POs' knowledge and expertise. <h3>Methods:</h3> In 2023 IPARE had 6 virtual meetings, 2 in-person meetings at the PARE Conference and EULAR Congress where we shared our activities, discussed the acquired webinar knowledge, provided information about the healthcare systems. 4 webinars dealt with the role of rheumatology nurses, how to accelerate diagnosis and treatment, how to write a good abstract, and how to involve PRPs in national research. The Chilean Network of Rheumatic Patients, an umbrella organisation made up for several POs for RMDs tried to put into practice, explore and replicate some of the work developed in IPARE and from IPARE members and customise it to the Chilean reality. The Network launched its first survey in July to have data about our RMD patients in order to study the reality of our patients, use the information for campaigning activities and abstracts shared at PANLAR/EULAR/ACR Congresses. The webinar "How to write an abstract" was a great help. We'll repeat a survey every year to analyse changes and emerging problems to adapt our work. In the second semester of 2023, the Chilean Network of Rheumatic Patients developed a program of educational sessions for patients and families in different regions carried out mainly in hospitals and partly funded by pharma.Besides the educational sessions, the Network held meetings with local health authorities, medical directors of the hospitals or the health service, regional agents of the Health Superintendence, nurses and the press to create awareness for RMDs and tried to advocate for challenges patients face, e.g. the lack of specialists, long waiting lists, problems with prescriptions and medications. Knowing from the webinar the role rheumatology nurses can play, we invited in all sessions a pharmacist, a patient representative and a nurse to teach patients about their rights, how they can access biologics, and how nurses can be a great support for patients. Having nurses in our sessions was a benefit as patients could learn that nurses can take away their doubts, help with information, and make it easier to get a high cost treatment. As a Chile representative attended the EULAR PARE 2023 Conference where the EULAR Manifesto was launched, we now have the chance to use the EULAR Manifesto toolkit as an instrument to support our advocacy efforts with our Manifesto. Finally, a last benefit for our work with IPARE is our country's increased number of participants in the EULAR PRP online course. From 1 person in the first online course, we managed to get 3 more people to join the second course. We hope to create a national PRP network to improve patient participation in research and promote research topics relevant for patient care. <h3>Results:</h3> Various IPARE activities have become a source of knowledge and support for our work. The EULAR Manifesto Toolkit is a valuable instrument when applying the Pan-American Manifesto. <h3>Conclusion:</h3> There is a lot more to share, learn and then implement to contribute to better healthcare for RMD patients in Chile and Latin America in the future. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> Gonzalo Tobar Carrizo I was a member of the Lupus Patient Council for Cerenimod phase 3 clinical trial from 2021-2023, IDORSIA, Dieter Wiek: None declared.