Background: Individuals living with systemic lupus erythematosus (SLE) face a number of challenges in managing their condition. Interviews and community forums with SLE patients suggested that unpredictability and variability of symptoms contribute to the erosion of formal and informal social support and highlighted the need for information and skills to adapt to symptom fluctuations. In addition, patients suggested that digital tools may be particularly well suited to addressing these unmet needs because symptom unpredictability reduces the ability to reliably attend in-person interventions.

Objectives: The purpose of this project was to use community-based participatory research and patient-centered outcomes research principles of practice to engage stakeholders including SLE patients, patient advocacy organizations, and providers to prioritize unmet needs and to develop resources to address those needs.

Methods: Initial recommendations for content priorities and methods of delivery were developed through a series of stakeholder meetings and a survey of SLE patients. A usability assessment of the preliminary digital platform was conducted through stakeholder interviews.

Results: Content areas identified as priorities included: nutrition, communication (family/friends and health care providers), physical activity, and self-management. Stakeholders emphasized the importance of digital access to this content (website, smartphone application). Given the variability of SLE experiences, stakeholders desired the ability to regularly visit the platform, to receive tailored messages which would guide them to relevant information, and to conduct open searches of the material. Key suggestions for improving the platform included: a sign-in for users to track activity, a live chat with SLE experts, a variety of static and dynamic virtual tools, and an ability to connect with other SLE patients.

Conclusions: Individuals living with SLE require different things at different times. Digital platforms were identified by stakeholders as a viable way to provide this since they can be easily accessed and tailored to individual needs.

Public Health Implications: Community-based approaches have the ability to truly foreground the perspectives of those who are affected most by a problem. The findings from our work speak to the necessity of creating tools and resources that address the needs that are most important to those affected by a health problem.