These resources have been created to help Holland Bloorview's clients and families understand how their de-identified clinical data will be accessed by authorized data consortiums and research partners. On this page you will find:
- an infographic and animated video illustrating how a client's clinical data can be de-identified and shared
- a list of frequently asked questions (FAQ) on data sharing
Your clinical data-sharing journey:
To understand how a client's clinical data will be de-identified, stored securely and shared with data consortiums and research partners, we have created an infographic to explain the data-sharing journey for children, youth and their families. Please scroll through the images to see this journey and read the captions below.
Data collection
When a client visits Holland Bloorview, their clinical information, known as data*, is collected by their health-care practitioner as part of their electronic medical record.
*Data is any information about a client like their name, age or height for example.
Data storage
The client’s clinical data is then stored in Holland Bloorview’s secure electronic medical record called ‘Meditech’ to inform their care.
Data de-identification
Holland Bloorview removes any personal information about a client like their name so it cannot be traced back to them. This de-identified data is then stored in a separate and secure computer server or ‘vault’.
Data sharing
De-identified data is shared with authorized data consortiums and research partners so they can develop new pediatric innovations and better treatments. Together, we’re building a better future for kids and their families!
Opt-out
Not interested in sharing your clinical data? No problem! You can opt out by going to this website.
You can watch this short animated video where Gabriel, a client ambassador at Holland Bloorview, explains how data is:
- collected from clients' electronic medical records,
- de-identified and stored in a secure computer database at the hospital, and then
- accessed by data consortiums and research partners.
Together, we are working to build meaningful and healthy futures for all children and youth and their families at Holland Bloorview and beyond!
This list of frequently asked questions (PDF) has been created to answer common questions about Holland Bloorview's data-sharing initiatives.
If you have a question that isn't addressed in this FAQ, please contact us at hbconnect@hollandbloorview.ca and we will respond to your question.
