By OM1 | February 2025
Hidradenitis Suppurativa (HS) is a chronic and debilitating skin condition that presents significant challenges for patients and healthcare providers alike. Many patients suffer for years without an accurate diagnosis, causing painful nodules on the skin to worsen over time. HS is often associated with systemic mental health, immunologic, and cardiometabolic comorbidities that diminish a patient’s quality of life.
Robust, real-world data (RWD) offers an opportunity to see the full HS patient journey for reduced time to diagnosis and more informed treatment decisions to improve the long-term health outcomes of HS patients.
Understanding Hidradenitis Suppurativa
HS has a significant impact on quality of life. Some patients endure symptoms for 12 years or more before receiving an accurate diagnosis. Additionally, patients with HS often have systemic comorbidities such as obesity, depression, anxiety, and polycystic ovary syndrome (PCOS). The visible and painful nature of HS often contributes to significant mental health challenges, including anxiety and depression. These factors create a complex care landscape, underscoring the need for enhanced understanding and standardized pathways to effective treatment.
Unlocking Deeper Insights into HS
OM1 has partnered with the American Academy of Dermatology (AAD) to create the largest dermatology data network in the U.S. With an extensively linked and representative dermatology network incorporating AAD’s DataDerm™ registry, researchers can save time and resources with curated, clinically enriched, and research-ready data that streamlines the clinical research processes.
The OM1 PremiOM Hidradenitis Suppurativa Dataset’s clinical richness, derived from linked claims and specialty EMR data, provides a comprehensive understanding of the HS patient journey for more complete insights into disease progression and treatment outcomes. With a cohort of 48,000+ patients and an average of 8 years of follow-up, researchers benefit from a strong analytical foundation that supports longitudinal studies and real-world evidence generation. The research-ready dataset ensures faster time to insights for clinical trials, epidemiological studies, and drug development.
The OM1 PremiOM HS Dataset’s Distinct Value
A new initiative by the AAD aims to shed light on this often overlooked condition. By leveraging more than 63 million deidentified patient encounters within DataDerm’s clinical data registry paired with OM1’s AI-powered Patient Finder™, researchers will gain new insights into the patient journey for HS. This project, which is possible due to support from Novartis, will help dermatologists identify HS patients earlier, improving diagnosis, coordination of care, documentation, and screening for disease severity.
Amplifying Endpoints with AI & Machine Learning
The HS dataset can be further enhanced with machine learning algorithms that extract lesion type and location, as well as generate estimated Hurley Stage scores, the standard system clinicians use to assess HS severity. Estimations of disease activity are based on clinicians’ notes using validated models.
These estimation models are built on endpoints extracted from patient records, and offer unparalleled insights into disease progression. By amplifying the availability of disease activity endpoints over time, these estimated scores enable healthcare providers to accurately classify disease progression, facilitating more targeted and personalized treatment plans. These AI-driven insights also enhance the understanding of individual patient journeys, offering opportunities to optimize care and improve long-term outcomes. Beyond the clinical setting, AI amplification advances HS research by enabling nuanced modeling of disease trajectories.
Combine observed and estimated Hurley Stage for enhanced insights
Addressing the Mental Health Burden
Studies continue to show the link between skin conditions and mental health. With 1 in 4 Americans impacted by a skin disease, combined with the increasing mental health epidemic, it’s critical to uncover and introduce solutions that will ultimately improve health outcomes.
The physical and social impacts of HS often lead to psychological distress, which can exacerbate the overall disease burden. The OM1 HS data network includes detailed insights on mental health comorbidities, shedding light on how HS affects patients’ psychological well-being. By capturing insights on the impact of a range of treatments on mental health and incorporating perspectives from multiple data sources, OM1 empowers stakeholders to address the full spectrum of challenges HS patients face. This holistic approach is essential for improving both the visible and underlying dermatology and mental health outcomes.
The Broader Impact of Real-World Data in HS
With access to robust real-world data and AI, researchers and providers are empowered with real-world evidence and insights that accelerate the evolution of new therapies and improve patient care and outcomes. Understanding the HS patient journey from end to end is critical to shortening time to diagnosis and improving a patient’s health holistically.
Contact us to discover how you can unlock comprehensive insights with real-world data and AI that reflects the full HS patient journey.