Abstract
BACKGROUND: Sharing health data within and across jurisdictions is important for research and improving healthcare quality; however, researchers, governments and funders must balance the benefits of data sharing with data privacy. Though frameworks exist to guide data sharing it can be difficult to translate these into practice. Therefore, our aim was to create a practical example of data sharing for researchers in pediatric rheumatology. METHODS: We utilized expert consultation with leaders in child health, genomics, rheumatology, bioethics, privacy and records, bioinformatics, and legal counsel to better understand barriers and enablers for sharing of health data. We used these barriers to frame the learnings of UCAN CAN-DU (Understanding Childhood Arthritis Network Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases) which is a collaboration that collects and shares phenotypic, genomic, health economic and patient reported data across centers in Canada and the Netherlands in order to provide a real-life, practical example of data sharing across borders in pediatric rheumatology. RESULTS: Barriers to data sharing include lack of standardized consent, ethics review processes for multi-site projects, developing data governance frameworks aligned with institutional and regulatory requirements, differing data standards and a lack of interoperability, and managing data access. UCAN CAN-DU provides lessons for navigating these barriers through standardized consent forms, centralized ethics review and reciprocity agreements; building a network to support data interoperability and harmonization of procedures; documentation to support data sharing, including legal agreements, utilization of a secure healthcare data storage compute facility, and a data access advisory committee with clear policies for secondary data use. CONCLUSION: We have shared how UCAN CAN-DU navigated barriers to data sharing, providing an example of data sharing for researchers in pediatric rheumatology. This work highlights the importance of research networks in establishing interoperability including minimal data sets, standard operating procedures, and institutional legal/contracts partnerships that ultimately support data sharing. The barriers and enablers presented are broadly applicable across countries and provide direction on areas for future research and initiatives to foster data sharing.