Evaluating the Problem of Finding and Accessing Restricted Data in Canada: Where Do We Go from Here?

In Canada, there has been a significant investment in digital research infrastructure, data management and data sharing to promote accessibility and usability of research data. The emerging Tri-agency policy, the establishment of the Digital Research Alliance of Canada, the development of a national data repository and a government-led Roadmap for Open Science are all examples of Canada’s trend toward improving the discoverability and usability of data. Yet despite these efforts, finding and accessing data that is restricted or sensitive remains a significant challenge for researchers. Barriers to accessing this kind of data include not being able to identify what restricted data is available; administrative burden; insufficient infrastructure for finding and accessing restricted data; opaque data request processes; and poor-quality data and documentation. To gain a better understanding of these issues in a Canadian context, a study was conducted by the Access Limited Data Discovery Working Group to answer three primary questions:

• What types of Canadian restricted data sources exist that include datasets that could be used for research purposes?
• How well do Canadian health data sources make their restricted data discoverable and accessible?
• What are the challenges associated with discovering and accessing restricted data from Canadian health data sources?

This presentation will share findings from the study, suggest recommendations for how to improve the discovery of and access to restricted data and engage attendees in a discussion on how we can collectively remove these barriers and enhance access to these valuable Canadian research data.