Background/Purpose: We report on two years of engagement with Sam, a patient-facing program to optimize the use of glucocorticoids and discontinue them when possible. We present aggregated data describing steroid-treated who seek, find, and engage with Sam from two channels: 1) Patient Advocacy Partnerships; and 2) Organic search.

Methods: The design and development of Sam included four steps: Resource Review. A survey of the medical literature and internet for current, scientifically rigorous, patient-focused content on steroid use.Needs Assessment. Workshops with patient advocacy groups and industry leaders; meetings with patient advocates; focus groups with patients; and meetings with industry experts. Construction of portal. Optimized for mobile devices, Sam is co-created with patients and physicians across multiple diseases. User testing and journey validation for learning and tracking are at the core of the platform. Development of learning modules, video snippets, behavioral nudges, and adverse event (AE) tracking capabilities.Sam is a companion that provides video and written educational materials and patient reported side effect tracking. The educational content and AE monitoring align with clinical outcome assessments that measure steroid toxicity: Glucocorticoid Toxicity Index (GTI), the GTI-Metabolic Domains (GTI-MD), and the GT-SNAPSHOT, a baseline score of steroid burden.

Results: The engagement of patients with Sam is reported through two channels. First, the 2025 Patient Advocacy Partnerships include those with the Vasculitis Foundation, the Sarcoidosis Research, the Lupus Research Alliance, IgG4ward! Foundation, Global Asthma & Airways Patient Platform, and the Crohn’s and Colitis Foundation. These alliances with advocacy groups have yielded the following insights: Strong engagement in learning about steroid-toxicityMajor interest in tapering, how to talk with doctors, neuropsychiatric side effectsMultiple articles readMultiple side effects trackedSubstantial engagement and elevated session timeSecond, we evaluated 2025 data from individual visitors to Sam who use organic internet searches to learn about a specific steroid induced condition. For example, the query “steroids and brain fog” yielded lessons that patients are:Actively seeking knowledge about a steroids in conjunction with one specific side effect Successfully finding knowledge on Sam because on high search positions in GoogleFully engaging in education based – extensive “time spent” on each topic

Conclusion: Steroids and Me (Sam) fills an unmet need for patients who grapple with steroid treatment. Sam engages and informs lay users in plain language, resulting in deeper understanding of the value and pitfalls of steroids. Sam includes steroid side effect mitigation and methods for doctor/patient discussions about safe steroid tapers. Patients from two essential channels (patient advocacy groups and organic search) engage with this unique, highly-curated resource provides education about steroids that leads to patient activation for healthy engagement around steroid use.

Engagement (sample). Patient Advocacy and Google Search results to be updated

Disease specific (sample) Patient Advocacy and Google Search results to be updated

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/steroids-and-me-sam-engaging-and-educating-steroid-treated-patients-via-patient-advocacy-partnerships-and-internet-search-channels/