Development of a digital self-management tool for people with sarcoidosis

<bold>Introduction:</bold> Sarcoidosis is a multisystem inflammatory disease, which often has a major impact on patients’ daily lives. A self-management tool, incorporating patients’ daily needs and challenges, could improve patient-centered and supportive care. <bold>Aim:</bold> To develop a self-management digital tool for patients with sarcoidosis based on findings from a novel machine learning data-driving approach, that identified needs and gaps in current health care on a community level. <bold>Methods:</bold> Patient community journey mapping (1) is a machine learning driven approach, that uses thousands of online patients stories and visualizes patients’ experiences on their care trajectory and impact of their disease on everyday life. Using these data as a basis we created a digital self-management tool. <bold>Results:</bold> Four main directions for a self-management tool were identified: providing patients ‘balance in life management’, ‘disease education’, ‘overview of medication’ and ‘monitoring QoL’ (fig). Each of these main directions had further subdomains. <bold>Discussion</bold> Patient community journey mapping is a novel method that extracts data from a community level, this forms the basis of the development of our self-management tool. Collaboration with data scientists and industrial designers helps us to better shape care. Future studies will be conducted to investigate the effectivity of this self-management tool. <bold>Reference</bold> Jung, J. et al. International Journal of Design Vol. 17 No. 2 2023 <fig><object-id>erj;64/suppl_68/PA5181/F1</object-id><object-id>F1</object-id><object-id>F1</object-id><graphic></graphic></fig>