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

Abstract

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

Keywords: autoimmune; autoimmune disease; chronic disease; clinical care; digital health intervention; digital voice; experience; lived experience; lupus; online community; patient care; patient experience; patient journey; patient need; patient symptom; perspective; social listening; social media.