Data Access and Linkage
Data linkage is a method of combining information from different sources related to the same individual or event in a single file. Data linkage relies on the availability of shared identifiers like personal healthcare number, names, birth dates or addresses across the datasets involved in the linkage. Datasets available within individual data sites are often linkable and their linkages can be requested through HDRN Canada’s Data Access Support Hub (DASH). Data linkage across different sites is typically not possible.
Using linked data makes it possible to gain a more comprehensive understanding than could be obtained from individual data sources. Linkage of data across sectors, such as health, education, early childhood development, workplace and the environment, helps researchers understand the complex interplay of influences on human health, well-being and development. Such research informs policy-making and investment decisions for healthier communities.
Linking External Datasets
External datasets can also be linked to datasets available within individual data sites with appropriate approvals in place. External datasets include but are not limited to:
- data from a researcher’s own clinical trial or other research study
- data from registries, including disease or population–based; and
- data from other organizations or custodians.
The required approvals from governing bodies and data custodians may vary by site and by the nature of the external dataset. For researcher-collected data to be linked, appropriate consent must be in place. See our Informed Consent resource for guidance on requirements.
There are variations in how linkages are performed at the various data sites, including how the data flow, who is responsible for what actions and how researchers will ultimately receive the linked data. Here are two common linkage scenarios when linking external datasets to datasets available within individual HDRN Canada Member Organizations.
Tips for Researchers Linking External Datasets
- Ensure that you have the authority and appropriate consent to link your study data or external dataset to the administrative data.
- Provide only the identifiers and key for linkage that have been approved. Program or survey data should be provided as a separate table with a common key.
- Confirm the data flow in each region and ensure the data are sent through the correct process as per each site’s requirements, for example, by secure file transfer.