Development of an Information Value Chain for Systemic Lupus Erythematosus

Purpose: Information value is created by providing care for specific medical conditions. To assess the appropriate content and time of delivery, a research framework to examine information values at different stages of the care continuum is needed. This study identified essential information to recommend for different stages of Systemic Lupus Erythematosus (SLE) management. Methods: Using Porter’s value chain analysis, we conducted a content analysis of the research literature, clinical practice guidelines, and patient education materials in an education-enabled environment regarding patient with SLE. We also used a natural language processing technique to automatically map the essential information identified into authorized concepts in the National Library of Medicine’s Unified Medical Language Systems. Results: The essential contents in the diagnosis stage pertained to a general understanding of disease manifestation such as SLE definition, pathophysiology, etiology, prognosis, and progress. The intervening stage highlights information about prominent spheres of therapeutic regimens and administration as well as diverse care providers with relevance to their specific roles. While screening information, such as self-awareness of SLE signs, is valued prior to a clinical visit, the monitoring information follows clinical visits to avoid flaring events. The key concepts identified were "butterfly rash" (C0277942), "anti-inflammatory drugs" (C0003211), "SLE" (C0024141), and "antinuclear antibodies" (C0151480). Conclusion: Communication of essential information identified at appropriate care stages can increase patient knowledge and reduce anxiety levels to improve self-care.