@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.

@Jenna-Kedy-0 @Sandra-Holdsworth

I totally agree about the need for education to address health literacy, health data literacy and digital literacy. I'm a big fan of continuous learning in general and free learning opportunities for everyone on important matters like this.

But what I took away from this article is that learning may be part of the solution - but learning alone won't solve it.

If the leading expert in digital forensics doesn't trust himself to tell what's real from what's fake anymore, despite decades of experience, acquired expertise and having access to all the tools he's been involved in developing to do exactly that - then I'm not sure what learning content could help.

As an instructional developer, my starting point would be to find subject matter experts to collaborate with to develop the content - but he is the foremost expert and he's clearly struggling because the tech is evolving so fast.

Learning opportunities could focus on raising awareness of the issue, and teach people to be cautious, but that won't help much and it won't help for long.

Perhaps a more direct approach might be to rally people to lobby governments to take more direct action such as:

Serious penalties for those creating fakes with the capacity to defraud, mislead or harm individuals.

Serious penalties for vendors that don't build safeguards into their products to ensure they can't be used to defraud, mislead or harm.

Serious penalties for social media companies that allow their sites to be flooded by fake info because it increases their profits.

And by serious penalties, I don't mean fines that sound large but equate to peanuts for large corporations. I mean:

Fines that significantly impact their bottom line.

As well as the potential for jail time for those at the top of organizations who are knowingly profiting from allowing such harms to persist.

And if they still prove reluctant to mend their ways, then license restrictions that curtail their ability to generate revenue, offer services, or ultimately, operate in any form in Canadian markets.

Smaller firms, e.g. manufacturers of household goods, face stiff penalties if their goods are shown to be in breach of quality standards, can be charged with criminal negligence if someone is harmed by their product, and can have their license revoked for repeated violations.

It's time to apply the same standard to bigger corporations that aren't just harming small numbers of individuals, but subjecting entire populations to harm on a daily basis for the sake of profit.

@Debra-Turnbull As someone who practically grew up in hospitals, I’m excited about AI hospitals but only if they’re built around people. If AI can reduce paperwork, that’s a win but no algorithm can replace the nurse who notices you’re scared. For me, the future isn’t AI instead of people. It’s AI helping people do what they do best.

@Kim-Locke

This turned out to be a really interesting session and hopefully the beginning of a rich conversation about how to tackle the stigma and misogyny in women's health care.

It was great to see other PAN members there too 🙂

@Debra-Turnbull

Totally understand the thorn in your side 🙂

But I'm not suggesting that we demand REB style consent - just that we seek a pragmatic solution that allows patients real choice over what happens to their data. The GRIIS-Claret recommendation has a lot of merit in that regard.

And no, while I wouldn't anticipate TCPS2 being bypassed or shortened as a result of AI acceleration of drug discovery, it does pave the way for more feasible timescales that would make it - from a patient and taxpayers perspective - far more desirable to keep tax-funded research in public ownership so that instead of fuelling profits for the pharmaceutical sector, we're making necessary drugs affordable at both the individual and system level. This is going to be particularly crucial as we move towards precision medicine, where we want open-access rather than proprietary solutions that keep us locked in over-priced vendor relationships.

There are plenty of profit-driven organizations steering AI development in ways that will drive even more profit and control in their direction. As patients, if we seize the opportunity to suggest practical solutions that allow us to reclaim some of that control, and redirect some of the profit towards the public sector, we're more likely to achieve better care for all of us.

@Jenna-Kedy-0 It's almost like you must file a patent for your image and any social media that you have created or have uploaded, so that you own all that content yourself.

This is incredibly horrific and I don't know enough about US law, if this can be banned or even stopped. I don't want a ghostbot posting like me!

https://www.malwarebytes.com/blog/ai/2026/02/meta-patents-ai-that-could-keep-you-posting-from-beyond-the-grave

@Kim-Locke

Yup, registered. Thanks for sharing!

@Chris-Johnston

So, many decades ago (I'm not saying how many), I did a summer stint with a company that produced script pads. These were those paper prescription pads that doctors would write instructions for the pharmacy to fill your prescription: drug name, dose, how to take, etc. They would write by hand, tear off the top page and hand you the paper. You left the appointment, went to your pharmacy, and handed over the piece of paper. Then the pharmacist would fill your prescription; based on what was written on that piece of paper.

These paper pads were created where every 6 pages were scripts (Patient_Name at the top; doctor's signature line at the bottom) and the 7th page would be a glossy advertisement for a drug. The pharmaceutical companies would fund the production of the pads and provide the ads to be used. The company I worked for would design the script and send the designs to the printers.

To this day, I still remember watching my doctor fill in a script, make a mistake, scratch out, tear off the page and throw it in the garbage... hit an ad, tear-off and throw-in-garbage... and carry on to the 3rd page to properly write out my script. At the time, I found that process somewhat interesting.

I see parallels between these 2 workflows... other than nowadays, the CDS software would probably delay the ads before a manual override-to-clear would activate. (It's like those irritating ads that show up when you're surfing the net. You can never get rid of them fast enough.)

Unfortunately, tear-off and throw-in-garbage will not work here.

@Jenna-Kedy-0

That's great Jenna - maybe I'll bump into you in some sessions 🙂

Wondering if anyone else is attending the symposium today?

@Alies-Maybee

Thanks Alies, I’ve signed up 🙂

@Kim-Locke @Debra-Turnbull

Yet another reason why allowing human-in-the-loop oversight to be tapered down, before the technology has matured sufficiently to provide a level of consistently and quantifiably reliable output is unacceptable.

Humans may be flawed as oversight, but better a flawed human than no oversight at all.

@Chris-Johnston
I loved the simple, down-to-earth explanation. It got techno heavy towards the end, but the approach was basic enough to be easily understood.

I'm going to watch this one again. Well worth the time!

@Chris-Johnston 🤣

Don't you just hate it when that happens...!
Thanks Chris!