These are my notes from a panel I was on with Dr. Kimberlyn McGrail, Dr. Devin Singh and Dr. Khaled El Emam, moderated by Dr. Mohamed Alarakhia. This was for the e-Health Conference, held in Vancouver on May 27 and 28, 2024. I didn't share these notes word for word, but got most of these points across!
My perspective about AI comes from being a patient who has had breast cancer, a caregiver of a son who has Down syndrome and also as a grandmother.
As a grandma, I feel like my own grandmother in the 1980’s, and her response when we first got an answering machine. She used to shout this message on the machine: “I HATE THIS MACHINE. ANSWER THE PHONE.”
I don’t hate AI. But I don’t really understand it. And we fear the things that we don’t understand.
My main question to the audience today was: Can AI be used to improve the human connection in health care?
If AI’s promise to patients is that it will save clinicians’ time, is the promise that their saved time will go back into quality time with patients? Which is what I’m desperate for as a patient -- to alleviate health professionals’ workload and to alleviate the burden of being a patient.
Or is AI’s purpose for clinicians to jam more and more patients into their schedules, to be more ‘productive’? Because that efficiency approach is killing us all.
I’m interested in the why of AI. And talking honestly about how can it both benefit + harm patients.
Leaning on alliteration here, here are four E’s that I wish every AI project would consider as they are setting out in the wild west of new technologies:
1. Equity – Technology has been awesome for my son Aaron, who is now 21. He uses Google Map to take transit, I track him on Find my Phone (and he tracks me too - so it is equitable). Aaron uses Siri for texting, but he’s forever yelling at Siri because she doesn’t understand him. Aaron has what I’d call a ‘Down syndrome accent’ and Siri was not created with people like my son in mind.
I hope the beautiful diversity of people is included in your AI efforts through universal design principles. Please don’t just create for the majority or you are marginalizing the minority and more.
2. Evidence – If you can show me evidence that AI helps my clinician have more time with me, improves the clinician-patient relationships, contributes to QI and patient safety, I’m all in.
3. Engagement – Please consider co-designing with patients right from the very beginning. Patient are much more than end-users or test cases. We have unique wisdom because we have the long view about our health care experiences. We have good ideas too.
4. Education – Engage patient partners in your communications efforts to ensure plain language communication and enhanced health literacy. If I understand the benefits and pitfalls of AI, I won’t be so afraid of it.
I worry that AI just another distraction. That it is a new, shiny bauble.
Health tech has made many promises to patients that have been broken or least not fulfilled.
On-line scheduling – it is easier to schedule a hair appointment than it is a doctor’s appointment
Integrated patient records across health sectors, aka interoperability – I’m forever printing off records my GP has sent me and bringing them to specialist appointments because their two systems don’t talk.
Patient portals – don’t even get me started about this. Patient access to their own data is very inconsistent across Canada
Twenty-five years ago, when my eldest son was five years old, he played a Tonka computer game on a floppy disc.
Before he could move onto the next level, the game prompted him, ‘finish one job before you start another!’ I worry that the other jobs in digital health are not going to be completed before we get distracted by AI, the next shiny thing. Finish one job before you start another.
I often say the Best Solution is a Human Solution. So I believe that the solution to our miserable health care troubles is more time for compassion and un-rushed human interaction. The solution to our troubles is human.
How can AI be used as a tool to help us get to the human solution? How can it help us improve the human connection in health care?
Patient Engagement Speaking and Consulting
I deliver tailored plenary talks and participate on conference panels with my patient perspective. I also offer workshops and consult about patient engagement.
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