Applications involving linkage with external data
A Researcher may request linkage to data not administered by Population Data BC (PopData). There are two likely types of data sources to which a Researcher would seek linkage:
- Data from a public body which is not covered by an Information Sharing Agreement with PopData
- Researcher-collected data
Data from a public body which is not covered by an Information Sharing Agreement with PopData
For linking to data from a public body, the review process would be substantially similar to that established for data administered by PopData, with Data Stewards performing their adjudication function, and the Data Access Unit coordinating the application and review process. PopData would additionally require an Information Sharing Agreement which may be limited to the single research project in order to have data transmitted to PopData.
For linkage to researcher-collected data, there will be additional requirements for review:
- Compliance with relevant legislation(s) for researcher-collected data must be considered prior to application. For example, data originally collected from a physician who is not employed by a public body will need to be in compliance with the Personal Information Protection Act (PIPA), in addition to meeting the requirements of FIPPA, upon approval from the public body for data linkage.
- Assessment of privacy risks related to linkage of researcher-collected data to additional data: the Researcher will need to describe the potential privacy risks in performing the proposed linkage. This will be done through an appendix to the Data Access Request which includes items common in a Privacy Impact Assessment.
- Informed consent or its waiver: the Researcher will need to provide evidence of written, informed consent to link the researcher-collected data for the specified research purposes. If consent has not been obtained, the Researcher will need to provide an explanation and a justification for why consent should be viewed as impracticable. See Consent form guidelines for more information.
It is recommended that Researchers submit the aforementioned additional requirements to PopData prior to data collection or pursuit of the research project, so that PopData together with the Data Stewards can ensure the relevant information is collected according to a suitable process for subsequent Data Access Requests.
If consents and relevant legislation allows, and the data are of sufficient interest, in the above cases PopData may choose to initiate discussions with the public body or the Researcher in order to make these data available for access by other Researchers via PopData. This would involve negotiation of Information Sharing Agreement(s).