The Data Donor Movement
A Dateva initiative:
Appealing to people worldwide to donate their health data for research in a secure and privacy-mindful way.
Petitioning governments to make it mandatory for healthcare organizations to share their data.
- Immediate Goal
Create a streamlined repeatable process for accessing hospital data for researchers and technology companies that know how to handle data safely - Long Term Goal
Release all hospitals data in an Open Data format
Health Organizations have Data
Hospitals, research institutions and other health organizations sit on a vast amount of valuable health data - all paid for by different levels of governments. This data could and should be analyzed to find cures, develop better drugs and contribute to personalized, predictive and preventative care.
People have Data
Everytime you pay a visit to your doctor, or have an operation or procedure, your health data is collected. You are the owner of this data and can choose how it is used. You can choose to donate your health data for research. There are tremendous benefits that can come from Health IT technologies - especially as more and more health data is shared and made available for research and analyses.
We Believe…
Prevention is Always Better
Prevention should be prioritized over pharmaceutical solutions.
Prevention is Everyone's Business
We should make prevention our business: donate data for research and support companies that support prevention.
Privacy & Security to be Taken Seriously
... but shouldn’t be used as an excuse.
Hospitals Data is Too Important
to be locked in silos and out of hands of medical researchers. It must be unlocked!
All Our Data is Important
All our data could be used for medical research and analyses. We must act together for the betterment of humanity.
Co-ordinated Effort is Necessary
We need a co-ordinated effort in Canada and around the world to make health data accessible for research.
What is Health Data exactly?
Health data is not just your medical records, it’s also data produced by medical devices and health and fitness wearables, medical apps, smart home sensors, data about your lifestyle, your environment, your family history, your genes etc.
But I don’t have access to my medical records
Yes, you do! Data collected by hospitals is yours. Even if you don’t have all the records you can go to the original sources and request them. It is your information and makes good sense to ask for it. Canadians – learn about your rights as a patient to have a full access to your medical records. International users – find out about your rights and hospital procedures in your country.
How do I donate my data?
