AI & Healthcare: Patient Rights?

[Chris Johnston]

Just read a Nature Article:
Medical AI trained on whopping 57 million health records

Searching for more info led me to a New Scientist article:
Concerns raised over AI trained on 57 million NHS medical records

I have huge hopes for what we might accomplish with AI, but also fears for how AI will be used if researchers, clinicians and governments are allowed to adopt a cavalier approach that rides roughshod over patient rights, consent protocols etc.

Patients, families, caregivers, and community members need to be involved - but projects conducted on this scale (with what appears to be little or no consultation with or involvement of patients/public) raise concerns that the window may already be closing on the possibility of authentic or meaningful involvement.

Would welcome any thoughts

[Kim Locke]

@Chris-Johnston As an autistic female, I'm constantly talked over when it comes to medical procedures, if I bring someone with me. The other person is always assumed as the "caregiver", even though I'm 100% able to articulate what I would like done and so forth. This is something that I fear will get worse with AI, esp. with non-verbal autistic people because the thought in society is that "if you cannot talk, you cannot understand or explain what's going on around you." There are many other ways to communicate!!!!

I'm also very worried about consent and lack of consent when it comes to disabled people and having medical procedures done. Will the AI be scripted, so that it will explain the procedure in accessible language for people who don't have caregivers with them to give consent for the procedure to take place? I hope this is the case. There's been many stories of disabled people having procedures done to them without their own consent.

[Alies Maybee]

@Kim-Locke These are such important issues, Kim. I am involved with a OECD project on AI governance and these insights are really helpful.

[Chris Johnston]

@Kim-Locke I understand the frustration of being talked over - my husband sometimes accompanies me to provide moral support and/or physical assistance in healthcare settings, yet each time it becomes a battle to get the doctor to speak to me instead of him - it's like I somehow become invisible.

How AI is scripted is one of the many issues where patients need to be involved and have their needs prioritized. Consent is another huge concern. As the integration of AI in healthcare continues to accelerate, it's vital to ensure that the patient's voice is heard at every level - from the doctor's office all the way up to the government responsible for setting legislation.

[Debra Turnbull]

@Chris-Johnston @Kim-Locke Thank you for your perspective Kim - this is insightful.

I attended a presentation on Healthcare AI. One concept is the idea of 'guard rails' when training AI. How do we define the parameters for: 1-training and 2-testing of the AI. The next question - who gets to define these? The patient perspective needs to be represented.

[Chris Johnston]

@Debra-Turnbull Totally agree Deb, and as in all things, I fear we, as patients, will only be included if we actively and consistently push to be involved.

[Debra Turnbull]

@Chris-Johnston Something else that I found interesting in your article Chris - this is the NHS. That's the UK, right? How is that healthcare system financed?

Something interesting that happened in the last fiscal budget, at least here in Ontario, the monies were tied to patient partners. That is to say, if an organization wants their money - they need to show how the patient voice is represented.

One could argue that unless patient participation is represented in the AI-model development and/or testing, legitimizes it. Therefore, if patients are not at the table, the model is invalid, and we let the organizations delivering healthcare know this. $$$ goes towards purchasing an AI-model.

[Chris Johnston]

@Debra-Turnbull That sounds like a fantastic model Deb, I haven’t seen any mention of anything similar in the NHS, but can’t say for certain. I’ll keep my eyes peeled