OP0341 PARE #SEEME – RAISING AWARENESS AND UNDERSTANDING OF JUVENILE IDIOPATHIC ARTHRITIS IN IRELAND

Abstract

Background For those living with juvenile idiopathic arthritis (JIA), it is a doubly confounding condition. The popular perception that arthritis is an old person’s disease leaves little room for understanding that children can also get the disease or its impact. There are 1,200 children and young people under 16 living with JIA in Ireland. In this campaign, Arthritis Ireland sought to capture people’s attention by subverting typical associations around arthritis. The campaign had to speak to and draw upon youth culture. Once people’s attention was captured, this created an opportunity to communicate key pieces of information about the disease and highlight the challenging situation regarding access to Irish paediatric rheumatology services. Objectives To raise awareness that children and young people can get arthritis; To increase awareness and understanding of what it’s like to live with JIA; To increase political support for the provision of enhanced paediatric rheumatology services. Methods #SeeMe was launched during Ireland’s National Arthritis Week (9-15 April 2018) and encompassed social media, public affairs and media relations. A key element of the campaign was the creation of a unique media asset, a short music video, which would speak directly to young people and encourage them to get involved in the campaign. The video communicated how JIA can impact enjoyable, everyday teenage activities such as dancing. A dedicated microsite was created which housed all of the campaign assets. A campaign petition called on the Government to implement the Model of Care for Paediatric Rheumatology. It was extremely successful, gathering more than 17,000 signatures and far exceeding the target of 5,000. The petition also harvested powerful testimony from supporters who were able to share their own stories of living with JIA. Personal patient stories were leveraged throughout the campaign by the involvement of #SeeMe Ambassadors. These were children and young people living with JIA who were willing to share their experience publicly. National and regional media were successfully targeted, securing considerable coverage. Subsequently, the campaign progressed to a third phase of activity as young people raised awareness of JIA through their own schools, social clubs and social media networks. An infographic was developed to communicate key medical information about JIA and paediatric rheumatology services in a clear, accessible way. Results #SeeMe received an overwhelmingly positive response, not just from those affected by JIA, but from the general public, the medical community and political stakeholders. The campaign was successful in the following measurable ways: 87,000 people viewed the campaign video; 17,000 people signed the #SeeMe petition; 820,000 people were reached by the social media campaign; 35 pieces of media coverage on television, radio and print were achieved; Lobbying of politicians by patients and their families prompted 12 TDs and senators to raise this issue; In May 2018, the Government committed to the appointment of an additional paediatric rheumatologist in 2019, with plans to recruit a multidisciplinary team. Conclusion This campaign set out to give a voice to those living with JIA and to increase awareness and understanding of the disease. The campaign highlighted the challenges in paediatric rheumatology services and proved an effective vehicle in harnessing public opinion; resulting in over 17,000 people signing the petition calling for the implementation of the Model of Care for Paediatric Rheumatology. In the wake of the campaign, the announcement by the Irish Government to invest in paediatric rheumatology services represents an important step forward. While much remains to be done, this is progress and highlights the important role played by patient organisations, and their public education and advocacy work. Disclosure of Interests None declared