@Paula-Orecklin
Interesting perspective... mix the 2 together and both will pass.

The problem with that is he will legislate himself into a corner... and then there won't be any wiggle room for when things go sideways. If you tie people's hands - then there is no flexibility when change happens. Hopefully, the legal beagles will catch this.

@Chris-Johnston thanks for sharing, I have registered.

@Kim-Locke I think healthcare providers, especially those that work in hospitals like to have binders with patient records in case the systems don’t work, the Hydro goes down or in the worst case situation, they are hacked.This way they always have access to the Patient history. I know that both my Liver team and Kidney Team have biinders for my health records.

@Alies-Maybee Alies, thanks for sharing with the PAN membership. PAN Members, you can sign out to receive their newsletter by registering here https://piccunited.org/partner-with-picc-united/

@Debra-Turnbull Love this reflection so much as this is SO real! Honestly, I feel this all the time too. Trying to hold the patient lens and system lens all at once can be hard as my brain is like… loading… buffering and those quick “fill this out now” moments are also hard as half the time I walk away like “Wait… I had more to say” Also some days I’m just not that brave too and I’ve realized that this work shouldn’t require us to be brave every single time because when I’ve felt safest in care, it wasn’t because I pushed myself to speak up as it was because someone created space for me to. That’s the difference. I love what you said about the clinician lens too as that “shock value” moment is such a two-way learning thing. I’ve definitely had moments where I’m like “oh wow, they’re learning in real time too” You’re not alone in this at all. Even this reflection; this is the kind of thinking that actually makes spaces better!

@Pat-Demo Thank you for sharing Pat! I'm wow-ed!!
28 years caring for her son and then turning that into system change is not just advocacy as that’s love in action. What hit me most is “People don’t realize the value of our lived experiences." like YES because it’s not just a story as it’s insight. My takeaway is she didn’t just navigate the system and that’s exactly the kind of impact I want to keep growing into in my own journey!

@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 @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?