Understanding the challenges associated with finding and accessing restricted data in Canada: a mixed methods study

Abstract

Data that are restricted are historically challenging for researchers to find and even more difficult to access. While efforts to support open data have expanded in Canada, the same cannot be said for restricted data. To better understand the landscape of restricted data in Canada, this study aimed to accomplish two primary goals: (1) identify data sources where data were restricted and (2) assess a subset of health sciences data sources to determine how well they make their data discoverable and accessible. Our study identified 137 Canadian data sources, where 48 health sciences sources were evaluated for discoverability/accessibility. Data sources received poor grades with respect to data discovery due to a lack of metadata standards (38/48, 79%), an inability to find datasets through searching and browsing (32/46, 70%), and a lack of data documentation to support reuse (27/48, 56%). The absence of pricing information (31/48, 65%) and opaque dataset restrictions (25/48, 52%) were identified as key barriers to the data access request process. This study highlights significant room for improvement with respect to improving the discovery of and access to restricted data in Canada and makes recommendations for how to better support restricted data sources on a national scale.

Keywords

• restricted data discovery
• data sharing
• research data management
• FAIR principles
• open metadata
• data access processes