POS0198-PARE CREATING A CAPABILITY BUILDING PROGRAM BASED ON PATIENT COMMUNITY’S ACTUAL NEEDS AND PRIORITIES: THE SJÖGREN EUROPE EXPERIENCE

Abstract

BackgroundPatients & their representatives are an important stakeholder in healthcare discussions. However, these individuals sometimes lack the appropriate knowledge & training to fully contribute to healthcare decision-making. The Sjogren’s community in Europe is represented by groups of various capacities & expertise at the country level but with large national disparities. Sjögren Europe, the European Federation of national associations representing Sjögren’s patients, seeks to support as widely as possible its members in leveraging their voice systematically & consistently in multi-stakeholder healthcare discussions, including participating in scientific research & collaborating with medical, social & political institutions.ObjectivesThe SE Member Capability Building Program was co-created by Sjögren Europe & the Novartis Immunology Global Patient Engagement team to respond to the needs of the European Sjögren’s community, as reported by Sjögren Europe member organizations. Specifically, the program supports Sjögren’s patient organizations in building capability and capacity in areas that most matter to them, sharing local experiences & best practices & increasing advocates’ knowledge, skills & confidence as leaders of their organizations.MethodsThe content of the Capability Building Program was shaped through a self-assessment in which participating organization self-identified strategic priorities, desired areas for expansion, and current barriers to growth. Questions in the self-assessment were taken from validated, third-party resources, including the PatientView methodology for assessing capacity and impact of patient organizations across eight key indicators[1]. These indicators are business stability, e-communication, services to patients, networking with stakeholders, networking with peer patient organizations, reputation, impact on health policy, and resilience. The results of this assessment were discussed individually with patient organization leaders to outline personalized opportunities for growth. The results were also used to inform a broader webinar training series based on commonly shared challenges & prioritized needs.Results7 SE member organizations, representing 7 countries, participated in the self-assessment highlighting various shared gaps & learning opportunities across the community. Organizational strategy, staff recruitment & retention, external communication strategy & financial strategy were identified as current gaps. Patient organization involvement in drug development, approval & reimbursement processes was identified as an area where all groups would like to learn more. The resulting webinar training series addresses each of these areas of interest to the community. The first webinar “External Communication Strategy: Actionable recommendations for creating awareness campaigns and partnering with the media” was offered November 2022 with an overwhelmingly positive response from the community. Additional webinars are planned for 2023 and will be focused on the above topics.ConclusionThe self-assessment was crucial in detailing where Sjögren Europe member organizations stand today & where they wish to be in the future. This allowed for the creation of a responsive and actionable webinar training program that meets the actual needs and priorities of the Sjögren’s community in Europe. The Member organizations have reported feeling heard and valued as a result of this initiative. The very good feedback encourages us to continue these concrete actions for patient organizations. Program is also a great example of a genuine partnership, following the EFPIA code of conduct[2], between a patient organization and the pharmaceutical industry.