Understanding the Challenges Associated with Finding and Accessing Restricted Data in Canada: A Mixed Methods Study

Abstract

INTRODUCTIONThis study aimed to identify Canadian access-limited data sources and evaluate a subset of restricted health sciences data sources to determine how well they make their data discoverable and accessible.MATERIALS AND METHODSA search was conducted across Canadian sectors and national experts were consulted to identify access-limited data sources. A subset of restricted health sciences data sources (n=48) was evaluated using a rubric to assess how well they make their data discoverable and accessible. The rubric assigned data sources a grade of A through C denoting how well they met certain discoverability and access criteria. The degree to which data sources demonstrated consistency between their discovery and access grades was assessed using Kendall’s rank correlation coefficient.RESULTS137 Canadian data sources were identified. Restricted health sciences sources received poor data discovery grades due to a lack of metadata (38/48, 79%), an inability to search/browse datasets (32/46, 70%), and lack of data documentation to support interpretability and reuse (27/48, 56%). Low data accessibility grades were assigned for the lack of transparent pricing information (31/48, 65%) and opaque data restriction criteria (25/48, 52%). Data sources with higher discovery scores had higher access scores on average (tau-b=0.31, p=0.0059).DISCUSSIONThis study highlights areas for improvement with respect to the discovery of and access to Canadian restricted data. Developing metadata standards to accommodate restricted data access procedures, improving data infrastructure to support restricted data, and expanding data documentation training for restricted data custodians are necessary to ensure that restricted data is discoverable, accessible, and reusable in the future.