Enabling access to british birth cohort studies: A Secure Web Interface for the NSHD (SWIFT)

摘要

This paper provides an overview of the new secure Web interface for the Medical Research Council (MRC) National Survey of Health and Development (NSHD), which is a Web-based data and metadata access system for the longest-running longitudinal study of health in the world. Accessing NSHD metadata and data has often been a challenge for external (non-MRC) users, because the underlying data and metadata formats have changed dramatically in 63 years of operation, and because the processes involved in metadata search and data access were manual and usually required ¿on-site¿ access. The design goals of the SWIFT include maintaining confidentiality and privacy of study members, enabling metadata search access to internal (MRC) and external users, facilitating data downloading and extraction from a range of underlying formats, and implementing procedures to ensure compliance with the governance policies of the MRC and the NSHD's governance panel. This paper details some of the challenges and successes of the MRC pathfinder ¿data access project¿ to enable access using SWIFT while protecting the study members and their data.