@Jenna-Kedy-0 Thanks Jenna! I had an experience recently in a focus group that reminded me of the power of sharing our experiences. The facilitator wanted to 'empower patients to hold healthcare staff accountable in the moment' - which is a lovely concept in an ideal world, but I feel places a significant burden on patients' shoulders when they're most vulnerable. I asked for an added option of anonymous feedback, for those who don't feel safe or empowered to speak up. I shared an experience of a time when I felt empowered to hold someone accountable in a healthcare setting that resulted in physical harm for me - it wasn't life threatening, but it certainly makes me think very carefully about how safe I feel to speak up 'in the moment'. Then two others spoke about being in similar situations with even worse results. The facilitator was genuinely shocked that healthcare professionals could actually inflict harm in response to being questioned by an 'empowered' patient. As a lone voice, I could be easily dismissed, but when others felt free to add their experiences, it became powerful enough to shift the needle towards action. So even in a room full of strangers, we can forge community through sharing personal experience.

@Sandra-Holdsworth I just signed up ton attend online! I am very excited

@Jenna-Kedy-0
Thanks for pointing out the equity piece Jenna! Always a consideration when we Patient Advisors do our work. It's just not about us; what about those without tech?

@Alies-Maybee This actually feels like a shift! For once, it’s not just more consultations as it’s giving “let’s use what we already have and actually do something” Near real-time data, collect once use many times, and a focus on trust + sovereignty is incredible. From my lived experience lens, people are tired of repeating their stories into systems that don’t connect. We need action, not another round of “tell us your thoughts.” If this Collaboratorium is really being led by folks ready to move then I’m in. Excited to see the working group opportunities as this is where it gets real!!!

Honestly, I’m not out here using AI to manage my health so no robot is running my care plan yet but my family doctor does use an AI scribe during appointments and I’m actually super okay with it. Lowkey, I kind of love it. Instead of them staring at a screen typing the whole time, they’re actually looking at me, listening, and engaging. It makes the appointment feel way more human which is ironic considering AI is involved! For me, it works because it’s in the background. It’s supporting the visit, not taking it over. I still want my doctor thinking critically, understanding my lived experience, and making decisions with me so I’m not using AI directly, but I’m definitely experiencing it and when it’s used like this, to enhance connection instead of replace it; I’m here for it!!!

@Amy-Ma
Thanks for these Amy.

The podcast reflects the reality in digital development. It brought out all the factors that make AI in health so darn difficult to design for.

@Alies-Maybee "When doctors started using EMRs instead of paper records, we were not asked to consent." We did not need to : we showed up at their door... there's the explicit consent.

What I will be looking for are those AI Scribes that are EMR embedded. The Scribe component will still need consent. In Ontario - I found this OMA PDF see STEP 2.

In B.C., their OIPC released a Guidance Document - see Jan.28, 2026 - refer to section 3. Consent

EMRs & paper charts = both are documentation processes. We would need a physician's perspective on the purpose and if consent is required.

@Alies-Maybee @Debra-Turnbull

After skimming, I’d mostly agree with Deb, some definitions are generic enough to work for us, some too specific to a European context, but some are oddly skewed.

Patient Data for example is defined as data collected by the patient? Perhaps this is a translation error but it’s factually incorrect, since that term is used widely to reference any data collected about a patient by any means, by anyone and in any connection to their health or interaction with healthcare providers, systems, vendors or research.

Digital twin is also inexplicably confined to virtual representation of a patient, organ or device. Yet in practice it is being used to represent facilities, organizations, systems, populations and clusters. Also not just in a traditionally ‘virtual’ sense but in training, testing and research settings for both people and AI, in algorithmic and interactive forms etc. And it’s important to understand that it may be based on actual or synthetic data, or any combination thereof.

As an example glossary, I think it’s useful in terms of knowing what’s out there in other jurisdictions, but as a base to build on it might be better to look to combining glossaries in use or under development by Canadian universities and institutions.

As a format it’s slick but lacks functionality, a wiki framework that facilitates discovery and comprehension through cross-referencing, internal and external linking, and multiple forms of both static and dynamic content, might prove more user-friendly.

@Sandra-Holdsworth You can still register for this Webinar starting at 12:00 pm Eastern Time today.

Thanks Sandra

@Kim-Locke Fantastic, hope to see you there 🙂

Hi Alies,
Each province and territory governs their disability benefits in their own way. The earnings cut-off is ridiculously low. In Quebec it may be as low as $200/month before clawbacks of disability benefits kick in. Other provinces make this earnings cut-off as an annual income figure, so there is slightly more flexibility.

Another tenacious rumour that I hear from some folks on disability benefits is that they are even discouraged from volunteering their time FOR FREE, at risk of losing their benefits. Haven't yet been able to get to the bottom of that one to see if there is any grain of truth to it, but I do hear it often.

@Chris-Johnston

Some good news - the co-lead for the project Dr. Colette Smart is developing a course based on the resource we created with additional content added. It will be offered by Island Health BC within BC and hopefully beyond. Dr. Smart is just in the process of negotiating that.

I hope as you say that at some point trauma informed care will become a regulatory requirement and part of the reason for the guide is to at least make it known there is a big gap, plant the send if you will. If the guide reaches individual professionals who have some interest/concern for patients who present as survivors of complex trauma and have the guide as a resource we felt they may provide pressure for systems change from the bottom up. It is like pushing a rock uphill but even small acts can result in big changes down the line.

Thanks for your suggestion about EHR developers/vendors, as you suggest it may be a way to reach users so I will certainly look into this.

Lori

I have heard about this course and know that folks have found it really interesting.

@Chris-Johnston me too!

@Alies-Maybee Looks great. Looking forward to the sesions.

Healthcare Excellence Canada (HEC) is offering a 4 part eLearning series that is very good. To enroll for free, click on this: HEC website

Once registered, you will receive an email with links to all 4 modules. Proceed at your own pace; start with the Introduction module. After completing all modules, you will receive a request for feedback from HEC.

@Alies-Maybee Alies, how would you like PAN to receive feedback?

@Chris-Johnston I actually don't know but I hope so.

@Chris-Johnston my pleasure, i'm looking to register but I was also looking to have someone join me are you interested?

@Alies-Maybee Thank you. I have added more comments for approval on the cafe message board and have registered.

For anyone interested in where AI-related biomedical research has currently reached - a recent article in Nature (see link below) highlights the use of AI to create multiple versions of entire virus genome - 3 of which were capable of infecting and destroying E. Coli bacteria.

With the declining efficacy of antibiotics, the capability to create tailored viruses is a huge step forward. However, it also opens the door to both the accidental and deliberate creation of potentially lethal viruses against which we gave no defences - which is terrifying.

It’s also, as the article points out, the first step towards AI-generated life - which has a vast range of mind-boggling implications.

Article in Nature in September: AI-Designed viruses are a step towards AI-generated life

Based on the pre-print research paper: Generative design of novel bacteriophages with genome language models

And an equally chilling piece of AI-powered biotech research appeared in MIT Technology Review in October:
Microsoft says AI can create “zero day” threats in biology by designing toxins that evade security controls.

@Chris-Johnston

Me too! 😀 See you there.

@Chris-Johnston

Hi Chris,

This is good (!)... it gives you a perspective into the American mind. Outdated websites are very common. What business has time to remember to update their public-facing webpage content. The answer is none.

A few things to note:

HIPPA has no jurisdiction in Canada, and

they are focusing on PIPEDA - the national privacy law (that applies to business; with exceptions to healthcare). (Light reading for insomniacs...)

It is important to note that - as a result of healthcare being in the jurisdiction of the PROVINCES - the feds must accept what 14 jurisdictions decide regarding healthcare. Personal Health Information (PHI) is a provincial matter governed by provincial privacy law. Transferring PHI between provinces is a nightmare. This, in turn, results in the national interoperability horror story that we currently find ourselves in.

Bottom line: it is up to each province to do its due diligence when it comes to PHI protection... and to which - the Americans are oblivious. Also, each healthcare service provider (hospitals, community care, clinics) must show conformance to privacy; in conformance to multiple professional standards. Heck, the provinces can't get their acts together - imagine the Americans trying to sell software in such an environment.

Just because things are being marketed for the American environment, does not mean Canadian entities need to agree. Take a look at your healthcare delivery organizations; look up their privacy statements. There is a catch phrase out there: "Patient PHI is stored on servers that reside in Canada." My local hospital went so far as to state that the PHI resides in Ontario (I'm based here in Ottawa.) I would love to do a deep dive into all the provinces and their privacy standards... but honestly - who has the time.

I'm going to stop here, 'cause I could prattle on forever. However, feel free to ask questions here and I'll do my best to answer.

@Lori-Herod This is an excellent resource, many thanks for sharing Lori.

@Alies-Maybee Excellent - thanks for sharing Alies!

@Virginia-McIntyre No worries! I am curious though how it went?

I see they've taken down the conference website pretty promptly.

When I queried (repeatedly) about virtual options, I was told on several occasions that they intended to stream the key notes, but the option wouldn't be added to the site until closer to the date - I suppose that was to ensure they didn't lose any potential sales. I checked back regularly and never found any evidence of it. Did anyone get to stream the key notes?

If anyone from PAN attended, would be very interested to hear:

How it went overall? What you learned? What impressed or disappointed?

And also:

Were there many patient/family/caregiver partners in attendance? Were there any PFCs presenting? Any specific topics or insights worth sharing? Did they draw any conclusions on the main question of 'Where is the Patients Voice?'

Inquiring minds would love to know 🙂