Article: Who Owns My Health Data?

[Chris Johnston]

Many thanks to @Amy-Ma for sharing this article:
Article: Who Owns My Health Data?

If you can't access the above, try:
Article: Who Owns My Health Data?

Frankly, reading this brings me out in a cold sweat for many reasons, not least of which is the statement on page 3 that EPIC has 150 AI features in development. Watching governments and corporations wrestle over who gets access to the biggest pots of data, makes me feel like a small mammal at the feet of battling dinosaurs. Even if I don't get trampled or crushed in the fight, I'll be on the menu for whoever wins.

I'm a firm believer in the principles of open science, sharing findings and methods makes total sense to me. But it was never intended to expose massive quantities of patient data to the machinations of global corporations and AI developers to exploit for obscene profiteering. And the potential for insurers to buy health data for peanuts (or worse, get directly connected under interoperability) scares me far more than the notion of it falling into the hands of 'foreign powers'.

I recognize the need for interoperability and connected care, but if interoperability is pushed forward without an effective consent infrastructure, then it's clear that consent will never get integrated retrospectively, and patients will have lost both ownership and control over their data. I'm happy to support interoperability - but only when it's built on a consent infrastructure that gives patients full autonomy over when and how our data is used and by whom, and the right to opt in or out whenever and as often as we choose.

[Debra Turnbull]

@Chris-Johnston @Amy-Ma
Any way to access this without the academic gateway blocking? I would really like to read this!

[Chris Johnston]

@Debra-Turnbull
Hopefully this works - let me know if not

Article: Who Owns My Health Data?

[Debra Turnbull]

@Chris-Johnston
Yes! It works...

[Debra Turnbull]

@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 $$$.