Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?

• DOI: 10.2196/44660
• Publication Date: 2023-03-12T21:35:05Z
• Authors: Caroline A Blackie; Lisa Gualtieri; Shanthini Kasturi
• Keywords: Digital Health

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. It characterized by broad spectrum of manifestations, depending on the affected organs and severity inflammation at time presentation. Despite improvements in management, treatments are required chronic, cyclical basis; have high potential for unpleasant side effects; deliver variable efficacy. Patients require care from multiple specialists, which can be delivered simultaneously sporadically. Our fragmented health system further exacerbates disconnect between intermittent medical lived experiences patients with SLE. The goals this research to (1) assess current standard SLE through review literature, including clinical consensus guidelines systematic reviews; (2) peer-reviewed literature social listening, structured interviews, data available open-access digital platform PatientsLikeMe; (3) present perspective that community has an opportunity acknowledge use interventions (DHIs) their patients. results indicate incorporating DHIs, such as internet media platforms, critical components even most basic support. Although support shape care, it not considered primary source clinicians. Integrating voices brings valuable dimension understanding impacts mutually dependent patient needs navigate disease daily life. meaningful leverage recommend existing web-based platforms registries, every stage journey help better manage condition. This proactively build trust well-being, reduce underreporting symptoms, increase shared decision-making, inform future research, improve outcomes.