@Chris-Johnston You're welcome!

I'm looking forward to this one - it should be really interesting.

@Alies-Maybee - done and shared with a couple of friends for support.

@Lynn-Ashdown Thanks for sharing Lynn 🙂 Do you know if they plan to offer a virtual attendance option? I’ve searched the conference website but don’t see anything, and I’ve emailed to ask but just wondered if you might know 🙂

Seems to be the season for new frameworks 🙂

Attending the Northwest Patient Safety Conference this morning, and BC's Provincial Health Services Authority launched their new framework which offers guidance for planning patient and family engagement for projects, programs, research and health system initiatives.

PHSA's Patient & Family Engagement Framework is presented as a 42 page brochure but it's well worth the read.

It's encouraging to see that both frameworks are recommending more active partnership activities, as well as a trauma-informed approach, which feels like an overdue shift in perspective.

@Chris-Johnston @Alies-Maybee Oh wow...

I came to the PFAC game much later. Currently, I'm at all 3 levels: my local hospital, the provincial Ontario Health Team, and nationally with PAN. It enables me to see the changes and flaws of the system.

We need PAN. It's arms-length approach and TRUE representation of the patient perspective is the only valid voice. Yes, squabbling between the provinces will continue, however, the existence of several past Health Ministers meetings gives me hope. People are screaming for healthcare.

Interestingly, I'm seeing a small shift in our local hospital. Our Digital Solutions PFAC has the Medical Director in attendance. In the beginning, we were being dictated to with many presentations. We patients were relegated to the CHAT where we debated what was being said... and sometimes disagreeing. That still continues, however, the last meeting I noticed the Med Director quietly listening while some of us discussed - on camera. Small shift; but things are slowly changing. Now, are they sustainable - that's a different story,

Here's the one thing that Ontario has done - tie the money to the patient voice. The last fiscal round, the TPA (transfer payment agreement) clearly stated that patient presence in operations and projects was necessary... otherwise they don't get money. (I could not tell you the specifics; they're not going to let me see the actual TPA.)

There is no excuse for tokenism. Tie the money to the patient voice - and pay the patient advisors. This is how momentum and sustainability gets built.

I completed the survey. It's a long one.

It's loaded with Comment boxes; asking for your thoughts.

Even if you know nothing about AI - consider doing the survey. It asks questions on commerce & business perspectives. Nothing specific to Health Care.

Add your 2 cents worth - this will have implications on Health Data.

@Alies-Maybee

Yup! That's the one!

Interop_CA.jpg

@Chris-Johnston Wow! yes, it seems like there is definitely more "bricks" needed based on your experience. It still would be great to get "brick" one in place, though.

@Debra-Turnbull Totally agree!

@Joan-Tu Be aware - not all AI is alike.

Most american AI models use scrapings off of the internet (FB, Google, Twitter) - where hate speech and medical mal-information runs unchecked, unreviewed and gets re-iterated ad nauseum. Mix in your data and your views get diluted, skewed, etc.

Be careful out there...

@Debra-Turnbull good sleuthing! This is helpful.

@Alifa-Khan Thanks for supporting this.

@Sandra-Holdsworth Thanks for sharing Sandra!

@Virginia-McIntyre Sadly the fairly restrictive criteria for bursaries means that the pool of eligible patients is likely to be very small.

I still don't understand why they chose to make no virtual option available - particularly since it only happens every ten years - I would have thought they'd be keen to capture as many patient voices as possible. But having queried this with numerous people involved, there's no consistent or plausible rationale. There's still time for them to change course if they truly want patient voices involved - but I doubt that's likely.

@Sandra-Holdsworth

I'm glad that I'm not the only one that caught this. This originated from what I caught on LinkedIn via Avis Favaro (CTV medical journalist)

https://www.levernews.com/mychart-rewrites-the-rules-patients-lose-their-rights/

The new agreement dates back to May.

@Sandra-Holdsworth stellar share!

@Alies-Maybee registered and can't wait to attend. Also, you and Ambreen did a fantastic paper together as well!

@Chris-Johnston

Oh my, l'Université de Montréal! That's! interesting! The Québec government has had such a top-down approach to healthcare... which explained the absence of patient partners. So now, one of the med schools is stepping up. Change is happening; exciting times!

@Sandra-Holdsworth Thanks for sharing Sandra - done!

@Chris-Johnston awesome share! I registered and am looking forward to learning more.

@Chris-Johnston

just a thought...how might the symposium organizers/advisors consider the use of certain audio books (or regular books for those of us whose eyes may still be in good shape) like:

"Heal your Nervous System: the 5stage plan to Reverse Nervous System Disregulation?"

kind regards,
anita l-l

@Chris-Johnston -e Ellen Terry -Thank you

@Judy-Birdsell Thanks, Judy! I am just back from vacation and catching up.

@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.