Data sharing at Holland Bloorview
As Canada’s largest pediatric rehabilitation hospital fully affiliated with the University of Toronto, Holland Bloorview Kids Rehabilitation Hospital is transforming care to enable the most meaningful and healthy futures for children, youth and families.
Holland Bloorview is committed to informing and developing new pediatric innovations and more personalized treatments to meet the unique physical, mental, and developmental needs of clients and families. The hospital are also committed to better understanding and addressing the unmet needs of clients and their families.
Accessing and harnessing the power of de-identified clinical data is essential to these commitments.
De-identified means data that does not contain any personal information about a client such as their name, address or health card number.
By using and sharing de-identified clinical data, Holland Bloorview can speed up the development of personalized therapies and interventions as well as improve and predict outcomes for children and youth with disabilities, developmental differences, and rare genetic conditions.
Holland Bloorview is partnering with research partners and data consortiums locally, nationally, and internationally to bring the health data of children with disabilities and developmental differences together.
These partnerships will close the innovation gap and revolutionize pediatric disability and developmental differences care and services at Holland Bloorview and across the world.
Opt-out process
Before Holland Bloorview shares its de-identified clinical data with any data consortium or research partner, a letter will be sent to all active clients and families about six weeks beforehand to share this information and with an option to opt out.
Clients and their caregivers can opt out of sharing their data through these research partnerships and data consortiums by either:
- completing the opt-out request form (available Spring 2025)
- emailing hbconnect@hollandbloorview.ca
Opting out is a decision for clients to make with their families or legal guardians together based on their unique needs.
Once clients and/or their parents/caregivers/legal guardians opt out, the request will be captured in the client's electronic medical record. from that point on, the client's de-identified data will not be shared with research partnerships and data consortiums.
Clients' and/or their parents'/caregivers'/legal guardians' decision not to share their data will not affect the care or services they receive at Holland Bloorview.
Contact Us
Questions? Contact us at hbconnect@hollandbloorview.ca.
