Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Nov 28, 2022
Date Accepted: Mar 12, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Listening to Lupus Patients: Integrating their Digital Voices to Drive Better Care.
ABSTRACT
Background:
Systemic Lupus Erythematosis (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 simultaneously and/or sporadically. Our fragmented healthcare system further exacerbates the disconnect between intermittent medical care and the lived experience of the patient with SLE.
Objective:
To deliver a viewpoint for how the clinical care of SLE patients could be better aligned with their daily needs through listening to their digital voices
Methods:
The medical perspective of the Lupus patient was sourced from the medical literature with a focus on clinical consensus guidelines and systematic reviews. The ‘digital voices’ and lived experience of Lupus patients were assimilated through peer reviewed literature on social listening and structured interview results of Lupus patients, and data available from open access digital health platform such as Patients Like Me.
Results:
Patients are incorporating digital health interventions (DHI), such as the internet and social media platforms, as a critical component of their care for even the most basic of support. While SLE patients are depending on this support to shape their care, it is not considered a primary source of care by providers. Integrating the voice of the patient brings valuable dimension to the understanding the lived experience of the SLE patient and the impact of mutually dependent patient needs as they navigate their disease in daily life.
Conclusions:
The medical community has a meaningful opportunity to leverage and recommend existing DHI such as online community platforms and online 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 wellbeing, reduce under-reporting of symptoms, increase shared decision making, inform and shape clinical guidelines and future research and improve patient outcomes. Listening to Lupus patients is the fundamental to improving and transforming their care. Clinical Trial: N/A
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