Liberals introduce privacy reform bill amid concerns over AI, data use

[Sandra Holdsworth]

https://globalnews.ca/news/11904549/liberals-bills-privacy-artificial-intelligence/

[Chris Johnston]

@Sandra-Holdsworth

Thanks for sharing Sandra!

Hmm, so that might take a while then

[Jenna Kedy 0]

@Sandra-Holdsworth This hits close to home.
I’ve shared my health information with countless providers. Most of the time, I do it because I believe data can improve care and help future patients but that only works when there’s trust. Canada’s privacy laws are older than my arthritis diagnosis and older than most of the AI tools we’re talking about today. The world has changed. What stands out to me is the idea that people should have more say over how their information is used, especially young people like me and those of us sharing sensitive health information. Innovation matters, but so do consent, transparency, and accountability. As someone who has spent 8 years turning lived experience into system change, I don’t think the question is “Should we use data?” It’s “How do we use it in a way that earns people’s trust?” because once trust is lost, it’s a lot harder to rebuild than any piece of technology!

[Chris Johnston]

@Jenna-Kedy-0 said in Liberals introduce privacy reform bill amid concerns over AI, data use:

people should have more say over how their information is used

Totally agree

I consider it a great privilege to have met, worked with and been mentored by patient and caregiver partners of all ages who have been fighting for patient rights for decades, from the very young to some in their 80s and 90s who are still fighting. All of them are champions for patient autonomy and agency, and role models for people like me who are far from young, but very definitely still learning, finding their feet and figuring out if and how they can help make a difference.

And I think the patient right to autonomy over how health info is used must apply to all health info - since all health info is by its nature sensitive, with the potential for harm in the wrong hands.

Our health info is also increasingly recognized as a gold mine for AI developers, criminals, researchers, pharma companies, and governments alike - most of whom have done far more to destroy our trust than earn it.