Novel use of a hash-based tokenization for sharing sickle cell disease data without sharing protected health information

Key Points

• This is the first SCD project to implement a privacy-preserving technique for linking individuals across multiple registries.
• Linkage of multiple registries enables data triangulation, yielding more accurate, and robust estimates than any single data source alone.
  
  Abstract
• Efforts to improve care for people living with sickle cell disease (SCD) have led to the development of several registries; however, many are dependent on time-limited funding and lack coordination. Consequently, existing data sets are fragmented and do not provide the comprehensive, longitudinal insights achievable through well-integrated registries. Although relevant data exist within electronic medical records across institutions, aggregation is limited by poor interoperability, inconsistent use of common data elements, and poor translation of natural language into codified data. These barriers hinder population-level research and contribute to gaps in understanding the lifelong progression of SCD. Creating a new common data system risk losing years of valuable data, highlighting the need to optimize existing data resources. This study aimed to develop a privacy-preserving method to securely link 3 of the largest SCD data collection efforts in the United States.