@Chris-Johnston
Thanks Chris, I'm registered.

Annette

@Katie-Upham Hi Katie,

I'm sure you're not cranky 🙂 though I think we all fear we'll be seen that way on occasion, particularly when we're raising concerns.

I haven't seen anything that's specific to patient engagement in health standards development - not even from HSO or CSA.
However, there are some interesting resources around guidelines development - which is in the same ballpark at least.
I've pasted some resource links below 🙂

Personally, I'm not an expert but I've got some experience as I've been involved in two standards projects with HSO, and prior to that several internal projects with a BC health authority. Happy to chat virtually any time if you want to brainstorm approaches etc. 🙂

Resource links:

GIN-McMaster Guideline Development Checklist
Particularly:

Section 3: Guideline Group Membership

Section 4: Establishing Guideline Group Processes

GIN-McMaster Guideline Development Checklist extension for engagement

Particularly the Supplementary Files linked at the end of the paper:

3: Evidence for engagement from the series of reviews

4: Rationale and additional considerations for engagement with interest-holder categories

6: Explanation and Elaboration for each Interest-holder Group

7: Specific considerations for engagement of each interest-holder group

GIN PUBLIC Toolkit: Patient & Public Involvement in Guidelines
2015
and the updated GIN PUBLIC Toolkit 2023

@Kim-Locke In terms of funding, check out the new HEC scholarship opportunity that Donna posted: https://www.patientadvisors.ca/topic/1835/new-pp-scholarship-fund/2

Yes, the process for enrolling seemed cumbersome to me as well, but I’d recommend reaching out to Holly directly - her email is included in the details in the original post - as she’s really keen to have patient partners included - so hopefully she can help or connect you with someone who can.

@Chris-Johnston Thanks Chris

@Donna-Rubenstein This is great for patients to have financial support for learning opportunities. I would like to suggest adding the Story Center storytelling workshops to the list of ideas for patient partner development. AbSPOR follows the Story Center method. I am interested in taking at least one of the workshops myself when I have more time, perhaps next year.

https://www.storycenter.org/workshop/

@Chris-Johnston
Hmmm... failure in humans' logical thinking processes.

I wonder how we could define THAT into the guardrail schema... and test.

Thanks for sharing this Donna.

You were all fantastic - it was time well spent to watch the patient engagement in research panel with three rockstars of patient-oriented research!

@Kim-Locke Hi Kim, it doesn’t specifically mention transcription but that is exactly what ambient AI is designed to do - it listens and generates notes for the patient record. So it’s not generally producing a verbatim transcription, although it’s capable of doing that, more often it’s creating a summary of key points discussed and consensus on next steps in the care plan.

For anyone recording conversations directly, it’s entirely possible to simply choose an AI to upload the audio files and have it transcribed. (Searching “AI to transcribe prerecorded audio” produces quite a few options). And of course for virtual conversations over platforms like Zoom, there are both built in and third party AI assistants who will transcribe or summarize the conversation directly.

However - and this a very big caution - while it’s possible, doesn’t mean it’s recommended. Uploading confidential patient consultations to an AI tool would of course be a breach of privacy and ethics.

The physician’s practice would need to enter into a contract with an appropriate vendor to safeguard patient privacy, in compliance with provincial and federal legislation, by guaranteeing that recordings are handled confidentially, not transferred to or stored on servers outside Canada, destroyed once transcriptions have been approved etc, etc.

But there are plenty of initiatives out there to help physicians do exactly that including a national initiative that will be explored in an upcoming webinar, see here for more info:

18 June Webinar: AI Scribes & New National Initiative

Hope that helps 🙂

Is @Chris-Johnston -the series described in the link looks interesting and so relevant to what’s happening in healthcare today. Also , a good list of resources on ‘Connected care “-which is driving the priority work -good for citizens..

@Joan-Tu interesting and out of the box! I will be travelling and can't make it but see there may be a recorded link.

@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 👀

@Joan-Tu @Chris-Johnston Hi! Good to know. Thanks for the update.

@Alies-Maybee @Donna-Rubenstein That’s fantastic!!

@Chris-Johnston Wish you could be here too Chris! We will be thinking about you...

@Alies-Maybee Absolutely! And there are so many added hurdles for patients trying to access their records. With lots of doctors retiring, leaving or downsizing their practices in BC during and since the pandemic, many choose to place patient records in the hands of commercial data companies.

There seems to be little or no regulation in this area, and the companies seem somewhat predatory. They offer free digital archiving services to primary care doctors, knowing that they can capitalize by charging exorbitant fees for "retrieval" when patients request their records.

Even when records are shared electronically in PDF format, they charge on a per page basis, which can quickly stack up to hundreds of dollars.

@Alies-Maybee Totally agree, great article - it reminded me of the NASEM workshop last year exploring how rehab is essential to longevity and healthy aging.
Workshop Proceedings: Aging, Function & Rehab

Far too often I hear people say they simply bypass rehab as it's beyond their reach financially, even when subsidized to some extent by health insurance - the limitations make it unaffordable.

@Joan-Tu I believe if you go on their website (see link above) that they have described the 3 initiatives that were chosen last year. They were not given to the usual big not-for-profits but to real community folks.

@Alies-Maybee This is the 1st time that I'm seeing such an in-depth analysis on interdisciplinary team care. Thanks for sharing - this really was a good survey.

This is an excellent open-access article for anyone reviewing papers that involve AI. Actually it’s more than that, since it offers a quick read primer on AI, a glossary of AI terms, a 10 question checklist and an inventory of other approaches - it’s definitely worth checking out:

https://bmjmedicine.bmj.com/content/bmjmed/4/1/e001394.full.pdf

@Donna-Rubenstein said in A multi-faceted approach to patient engagement in qualitative research

@Chris-Johnstongood catch.. I did the same .. they sent follow-up correction email, however strangely described it as a registration link error -

@Chris-Johnstongood catch.. I did the same .. they sent follow-up correction email, however strangely described it as a registration link error -

Hi Donna & Chris - I'm testing somethign. Deb

@Chris-Johnston Thank you so much for raising this idea - it really resonates with me. The idea of a Learning Circle feels like a natural and much-needed extension of the work we do. It's not just about building knowledge; it's also about building relationships, making meaning together, and offering mutual support. I think of it as part of a "circle of care" that keeps us connected and supported as we do this important, often emotional work.

I'd be happy to explore how we might get something like this started - perhaps even within PAN. I'd also like to hear from others in this community: is there interest in co-creating this? What would make it meaningful and sustainable? Looking forward to where this conversation might lead.