Researchers who are looking to access multi-jurisdictional data in Canada can count on DASH to:
- Provide transparent and readily-available information on the availability of data assets, common algorithms, and data access processes across Canada
- Provide centralized and coordinated data access support to researchers
- Support researchers in navigating the complexity of the data access journey
Looking for resources to help jumpstart your data request?
Review the resources on this page to become familiar with DASH processes and acknowledge key considerations. By doing so, you will be better positioned to ensure completeness of your request and help streamline DASH’s review of your project.
Please explore the following resources:
- Ensure you understand the DASH services and steps involved by visiting the How DASH works page
- Review the Considerations for Research Study Design below to be informed about the following topics:
- Data disclosures for research use
- Consent-based research studies
- Outside of Canada
- Jurisdiction Requirements and Services
- DASH Best Practices
- Visit the Data Access Process inventory to understand the requirements and procedures for accessing data at each partner data centre
- Visit the Data Assets Inventory to explore data holdings that can be requested through DASH. You will be asked to select data categories or specific data holdings required for your research project in the DASH Intake Form. Your selections will play a key role in our feasibility assessment for your project.
- Algorithm Inventory, if you are interested in validated algorithms for your research project.
- Working with Indigenous Data, if your project involves Indigenous data and to learn more about DASH’s priority in supporting Indigenous-led research projects.
- If you have additional questions, refer to DASH’s Frequently Asked Questions or contact DASH (firstname.lastname@example.org)
Once you have explored the DASH resources and are ready to submit your data request, please log into your DASH account, and submit a DASH Intake Form.
Please consider the following when designing studies that involve data access, sharing and linking activities. While some of these challenges stem from legislative constraints, others are due to policy choices and may change over time. We aim to streamline data access and sharing across Canada for research purposes so please check back here regularly to view updated recommendations and advice.
Data disclosures for research use
- Disclosure of personal health information (PHI) and de-identified data are subject to specific jurisdictional legislation and requirements set out in each HDRN Canada data centre’s agreements under which the data was originally provided.
- De-identified data refers to personal health information that has been modified using appropriate de-identification processes so that the identity of the individual cannot be determined by a reasonably foreseeable method.
- In many Canadian jurisdictions, there may be legislative or policy limitations to 1) the disclosure of patient level data, and 2) the transfer and/or sharing of data across jurisdictional boundaries for research use. This can have implications for research designed for data to be hosted / centralized in one location for analysis.
- DASH can support researchers in navigating these challenges and identify potential options early on in the research design process. DASH can also provide researchers with feedback as data sharing and/or access agreements are being drafted.
Consent-based research studies
- For research studies where the intent is to link study data with data at our HDRN Canada data centres, study participant consent is typically required for:
- the research team to provide identifying information (for example, health care number) to conduct linkage, and
- linked data to be subsequently disclosed to the research team.
- It may surprise you to learn that even with study participant consent, some jurisdictions have issues with sharing patient-level data outside of province, especially if agreements are in place between the HDRN data centres and the original data providers that stipulate only releasing aggregate data. In some cases, informed consent of participants will be overruled by these existing agreements and polices.
- HDRN Canada has prepared a guided resource for researchers on informed consent wording for administrative data linking. Click here to view the document.
- Additional consent language guidance is also available from our partner data centres:
DASH can provide researchers with additional feedback and guidance on consent requirements after having reviewed your project details
Outside of Canada
Disclosure of personal health information or de-identified data outside of Canada is prohibited in many Canadian jurisdictions. DASH can identify these challenges early on in the research design process.
If your research involves any of the scenarios described above, we encourage you to contact DASH as early as possible by completing a DASH Intake Form. We will work with you to identify any potential barriers early on and help determine options available.
Jurisdiction Requirements and Services
The table below outlines key requirements and/or additional details to consider in each jurisdiction.
|Research Ethics Board Approval Required||Yes||Yes||Yes||Yes||Yes||Yes||Yes||Yes||Yes||Yes||No|
|Local or Affiliated Principal Investigator Required||No||Yes||Yes||Yes||No*||No||Yes||No||No||No||No|
|Centre Offers Analytical Services†||No||Yes||Yes||Yes||Yes||Yes||Yes||Yes||Yes||Yes||Yes|
|Centre Offers Remote Data Access◊||Yes||No||No||Yes||Yes||No||Yes||No||Yes||Yes||No|
*Although a local (or affiliated) PI is not required at ICES, there are cost advantages if you do.
† Analytical services are subject to a cost and include but not limited to data extractions, linkage and analysis, and health indicator development.
◊ Remote data access implies that data can be access by an authorized person without being physically present within the geographic boundaries of the partner data centre. Additional requirements are in place that may limit remote data access in some situations.
DASH Best Practices
We suggest that researchers follow this checklist when developing research projects:
- Review the DASH Resources listed above.
- Connect with DASH early and often in research design process on subjects such as linkage, disclosures, hosting and access to linked data, informed consent and data sharing agreements.
- Seek consent from study participants to link their study data to their pseudonymous, administrative and personal health information.
- Seek support from DASH to ensure informed consent wording is appropriate and sufficient for the linkage and disclosure.
- Ensure your DASH Intake Form is complete. Answering all questions and including all applicable documents at the start will minimize delays.
- Develop a data flow diagram to describe how data will flow between each entity (i.e. research team, data centres, analytical site), where specific data linkages would occur and where analysis would take place
- Clearly identify the dataset name, included variables and the data business owner of all datasets you are requesting to link to data held by HDRN Canada research centres.
- Make sure that the information in your DASH Intake Form is identical to the information included in your ethics application(s).
- Each DASH Intake Form will be assigned a DASH ID. You will be notified of this ID once DASH acknowledges your request, and ask that you refer to the DASH ID in all correspondences.
- Inform DASH of any changes to your contact information.