Kucher A, Clearfield E, Curtis RG, Delaney M, Germini F, Iorio A, O’Mahony B, Page D, Rotellini D, Skinner MW. Development of a refined data dashboard for PROBE: enhancing data interpretation and advocacy support for national patient organizations. Haemophilia. 2026;32:4-224. Abstract FP-038 (514). doi:10.1111/hae.70232.
Introduction
The PROBE (Patient-Reported Outcomes, Burdens and Experiences) study has collected standardized quality-of-life (QoL) data from people with hemophilia (PWH) and without a bleeding disorder since 2014, supported by a dashboard available since 2016. The dashboard allows the visualization of aggregated data. As more patient organizations participate in semi-annual data collection, there is an increasing need for more flexible, intuitive, and visually rich tools to interpret PROBE data and to support local reporting, advocacy, and scientific communications.
Aim is to develop and implement a new interactive dashboard using Microsoft Power BI that (1) improves visualization and interpretation of PROBE QoL data, (2) facilitates preparation of abstracts, reports, and presentations on progress and gaps within national hemophilia communities, and (3) provides a foundation for future PROBE modules for women with bleeding disorders, von Willibrand disease, and other rare bleeding and platelet disorders.
Methods
We redesigned the existing PROBE dashboard using Power BI, drawing on feedback from NMOs, clinicians, and patient partners. The dashboard, updated monthly, connects to the central PROBE database. Key PROBE metrics, including EQ-5D-5L, are organized into themed pages: Demographics; Mobility and Activities of Daily Living (ADL); Pain (Chronic and Acute); Employment and Education; Surgery and Co-morbid Conditions; Severity and Inhibitor Status; Treatment; Joints; and PROBE and EQ-5D-5L utility scores. Sections allow users to filter and stratify data (e.g., by age, severity, inhibitor status, country, or collection period) and to export figures and summary tables.
Results
The PROBE dashboard provides interactive charts and tables that allow users to quickly identify patterns in QoL, including mobility limitations, pain burden, employment and education status, treatment patterns, and joint outcomes. Deep-dive views within each theme support more detailed discussions (e.g., comparing outcomes by severity or inhibitor status) and help patient organizations generate data-driven messages for advocacy and clinical quality improvement. The ability to export standardized visuals and summary statistics simplifies the preparation of national or multi-country reports describing QoL trends and progress, that could be used for research and advocacy.
Conclusion
The PROBE dashboard offers patient organizations an enhanced, user-friendly way to interpret QoL data. By improving access to clear, interpretable PROBE and EQ-5D-5L indicators, the dashboard supports global efforts to monitor outcomes, inform policy, and strengthen patient-centered care worldwide.
Presentation: HERE
