OP0319-PARE SEE ME HEAR ME: AN ANCA-ASSOCIATED VASCULITIS PATIENT CO-CREATION INITIATIVE
Authors: S. Perera, D. Krafcsik, P. Rutherford
Journal: Annals of the Rheumatic Diseases (2020)

Background: ANCA-associated Vasculitis (AAV) is a rare, severe small vessel vasculitis that affects multiple organs with a high acute mortality risk. As every patient presents differently, diagnosis is often delayed. Although treatments exist, responses vary, and remission is often not achieved or sustained. From the time of initial diagnosis onwards, patients suffer from an impaired quality of life. Coping with pain, fatigue, ongoing symptoms and combating challenges becomes a complex task and patients may be challenged in how best to communicate these emotions with health care professionals. We aimed to develop an initiative with Art and Voice, that would seek to empower people living with AAV and their carers in feeling understood, seen and heard in a meaningful way. This would invite a collective understanding of ‘how people make sense of key life experiences and what it means to them’ by creating a common language to address poorly addressed issues. Objectives: This project aims to provide a voice to patients to express personal experiences and complexity of everyday living and empower people to feel in control of their own health through an online platform. It should also allow practitioners to gain new awareness about issues faced by their patients, to better understand the relationships between caring and curing, hearing and listening. Methods: We collaborated with 10 patient association groups representatives, 17 AAV patients and 9 of their carers across 7 European countries. A series of workshops were set up to discuss issues faced and aid the subsequent production of a range of materials designed to provide clear, comprehensive content that would help individuals cope with the physical and emotional impact of AAV from diagnosis to living with it. This work was supported by a digital artist who is a rheumatologist living with vasculitis. Results: The co-creation of patient information materials featuring real life patients was successful and led to the development of a creative initiative called SEE ME.HEAR ME with an online platform www.myancavasculitis.com . This includes: (1) an awareness programme featuring artwork created by the digital artist and advised by the patients which captures the essence of AAV from the patients view (see Figure). (2) a series of first-hand patient and carer stories capturing their authentic voice on ‘what it is like to live with the disease’. (3) extensive written content designed to fill information gaps around AAV diagnosis, investigations and treatment and what to expect during clinical follow up. The platform supports patients in asking questions and seeking information while signposting them to their own healthcare professional for advice and their local country patient association for support. Table 1. Sensitivities and specificities of examinations in gout and calcium pyrophosphate deposition disease Conclusion: People with AAV need support throughout life, the profound psychosocial influence from illness makes the lived experience, challenging. SEE ME. HEAR ME online patient platform aims to generate awareness around AAV, improve physician and patient dialog, and enhance people’s experiences of living and coping with the disease. In addition it provides support for carers and giving valuable insights to friends, family and the general public about what the lived experience with AAV looks like. Acknowledgments: We wish to thank all European patients and patient association leads who worked on this project Disclosure of Interests: Shanali Perera Consultant of: Vifor Pharma, Dijana krafcsik Employee of: Vifor Pharma, Peter Rutherford Shareholder of: Vifor Pharma, Employee of: Vifor Pharma, Baxter Healthcare