@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.

In the spring I attended (virtually) the AI in Medicine conference in Krakow, Poland. At one of the panels there was mention of a hospital in China that is fully autonomous - including AI doctors and AI nurses.

I found this article that discusses the hospital: China's AI Hospital.

@Chris-Johnston
I found myself smiling as I was reading this - 'cause it's so true !!! Ignoring the technical jargon, the cause and effect is still relateble. When basic testing procedures get ignored - all hell breaks loose. Love the term "blast radius".

"...successful upgrades had trained us to believe those gaps were safe."

Complacency is a problem in deployment. Non-AI systems may be a little more stable when they go haywire, but at least they are contained. We just had a building full of scientist, analysts and managers running around: "the server has crashed!!" Power down, power back up, locate and block the last change made.

AI is a differenct beast. First - how do you detect if something has gone wrong? Second - how do you contain when it does go wrong? Third - how do you disable it without affecting your other systems? Some of these things do not have a simple "off" switch.

Ignoring my analytical comments - thanks for the giggle this morning !... and on a Monday, no less !!! 😁

@Chris-Johnston I think that’s exactly what stood out to me too. As much as I believe in health literacy, this feels like a problem that’s becoming bigger than education alone can solve. If the leading expert in digital forensics is saying, “I’m not sure I can tell what’s real anymore,” that’s a pretty strong signal that we can’t expect the average person to do it consistently. Education can help people be more aware but it won’t keep pace with technology forever. At some point, responsibility has to shift to the companies creating these tools and the platforms profiting from them. I really like your comparison to other industries. We don’t expect consumers to personally test the safety of every product they buy and we have regulations. AI shouldn’t get a free pass simply because the technology is new. For me, the answer is probably both: better education for the public and stronger accountability for organizations that create misinformation. Definitely lots to think about!

@Chris-Johnston THAT ! was a good read.

Epic, unfortunately, is the major player in the HIS (hospital information system) sphere. They own the majority of the market.

And will patient interests get sidelined along the way?

Of course - they currently are and will continue to be.

The promise that AI will improve medicine for everyone depends... on rules that make sharing healthcare and biomedical data safe, reciprocal and worth it.

True. Governments can set up these rules frameworks... and the patient perspective will continue to be ignored. With the current geopolical situation, either China or the US will wind up with our data.

BUT
There is something each individual patient can do about the situation - just say: "no".

"Do you consent if we use an AI Scribe?"
No.

"Here is a Consent Form we need you to sign authorizing that your data will be shared..."
NO. (push the paper back at them.)

"We're doing a clinical trial. If you would like to participate, please sign this ICF (informed consent form) that states that your data will be sent to the U.S..."
NO !
"... and we send your tissue/blood to the U.S. for analysis."
HELL NO !! (speaking from experience here)

Patients have the right to refuse to consent. The tensions between the US and China make it now that our data becomes the pot of gold.

I am still a believer in the pan-Canadian Patient Consent Module. As long as there is a Literacy component that explains patient data and how commercial & research forces are fighting over it. It is, after all, very valuable $$$.

@Chris-Johnston

You're right Chris. DoB (date of birth) is a personal identifier (PI) (I missed that!). That is irresponsible to include in any standard. That's why they will usually replace it with:

born in 1990-1999 born in 2000-2009 born in 2010-2020

or

20 - 30 year of age 31 -40 years of age 41-50 years of age

It's a way of by-passing the PI issue. Perhaps it's time to review that Standard.

Found another one:

"The AI hallucinates..." - It doesn't have a brain; it doesn't dream. It is made up of metals that run on electricity.

"The AI produces erroneous output; based on erroneous input."

@Debra-Turnbull

Totally get that - I'm not sure it's about appeasing the public so much as underestimating them - the overly simplistic approach sometimes riles me. However, video animations and comic book style explainers have proven very popular across different ages and demographics, and they're certainly less intimidating than the usual academic papers and bureaucratic reports.

@Chris-Johnston
I believe that what you are describing is called "marketing". 😁

@Alies-Maybee

I'm signed up - sounds interesting 🙂