@Debra-Turnbull said in Ontario Launches Provincial Primary Care Record Procurement:

Now... where is that Consent module?

Working on it! I have a date to chat with the lead researcher behind the GRIIS CLARET project in August - one of many irons in the fire, warming up nicely 🙂

My bad !

As Rob posted regarding Santis in the Discussions & Sharing section of our Forums:

https://santishealth.ca/insights/rapid-recap-ontario-launches-provincial-primary-care-record-procurement/

It would appear that Santis is another player in the Primary Care dataset space.

I think I see what's happening here: Ontario is shooting to become the leader in Canada to provide the unified Patient Record - of both hospital and primary care data.

@Alies-Maybee Thank you!

@Chris-Johnston Yes, it’s very dense!

@Sandra-Holdsworth

Love it, this is a really good read - thanks for sharing Sandra 🙂

@Sandra-Holdsworth

That's a really interesting blog Sandra - thanks for sharing! I've copied it forward to share with some folks at UBC 🙂

@Kim-Locke

Absolutely Kim,and that’s why we need to keep finding ways to push back, and to ensure the patient voice and perspective is included everywhere at every stage. Not just when it’s too late to make a difference.

@Jenna-Kedy-0

These are excellent examples Jenna, I’ll submit them for inclusion 🙂

@Debra-Turnbull AI can absolutely help catch biased language or wording we might miss, but it shouldn't be the final boss. The Validation Plan is where the magic happens. It's basically asking, "Hey, patient partners; did we actually get this right?" AI can be a great first draft, but lived experience is the gold standard. If the people whose stories we're trying to tell don't see themselves in the final product, we still have work to do!

@Alies-Maybee ChatGPT will not tell me the best way to commit suicide, it redirects me to 988 and other resources for people in crisis.

It will still allow me to plan a school shooting, terrorist attack, or mass shooting though. Ugh 😕 This should also not be allowed at all!

@Sandra-Holdsworth Thanks for sharing Sandra - I submitted. It's an interesting set of questions, so I expect the results will be fascinating!

@Sandra-Holdsworth

Thanks for the head's up Sandra! So glad that the virtual attendance option is free - I'm signed up 🙂

@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.

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."

@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.

@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 $$$.