“Can I still get a tattoo?” Patients’ experiences across the clinical trajectory for metastatic melanoma: a dynamic narrative model of patient journey
Published June 26, 2019
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Patient Family & Community Engagement
Navigating Uncertainty: Patient Experiences of BIRADS 0 Mammogram Results
Published August 6, 2026
Objective: Describe experiences of patients receiving BIRADS 0 (inconclusive) mammogram results in electronic health portals. Methods: Recruited eighteen patients who had received BIRADS 0 results via the portal in the last 5 years.Semi-structured interviews yielded qualitative data, analyzed sequentially using the immersion crystallization method to identify content and then iterative coding both individually and in groups. A team
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Patient Family & Community Engagement
From Drifting to Anchored: How Online Health Communities Can Transform Care for Complex Chronic Illness
Published August 6, 2026
This personal narrative recounts a 25-year diagnostic odyssey with Ehlers-Danlos syndrome, defined by medical fragmentation, dismissed symptoms, and profound isolation. It illustrates how Online Health Communities (OHCs) bridged the chasm between lived experience and a clinical system ill-equipped for complex chronic illness. For patients like me, these digital forums provide the peer validation, practical knowledge,
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Patient Family & Community Engagement
Making Volunteer Data Meaningful: Driving Patient Experience Outcomes
Published November 23, 2025
Volunteers play a crucial role in the patient experience, but their impact can remain unseen without the right data. In this PXLB, Roseanna Galindo shares how a simple data strategy can transform volunteer efforts from anecdotal support into measurable, strategic value. She offers quick, practical steps to start small, track what matters, and ensure volunteer
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