@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.

@Chris-Johnston Thanks for sharing! Am registered for this one.

@Chris-Johnston @Alies-Maybee That happened to me too. Ok, so I registered the day before the event... but still - no response from OSSU whatsoever. 😞

Oh well... was looking forward to it.

@Chris-Johnston thank you for the feedback. I’m glad you found it resourceful and that it helped you with your peer review. I will pass your comments onto the team..

If any other members are reading this, I highly recommend it that you take a look, especially if you’re doing peer reviews or looking to do some in the future.

@Donna-Rubenstein update - I attended the Community -Patient Partner consultation session . well organized and structured for participation by everyone (breakout rooms) - questions focused on what are ideal characteristics for this new group . good discussion ; I look forward to learning more about the organizations goals and areas of work envisioned.
correction to earlier post- this is not replacing other networks , more of a network of networks .

@Chris-Johnston Thank you! I will try out those features.

@Sandra-Holdsworth Many thanks for sharing Sandra! I’ve had the CIHR course my to-do list for a while but this is my incentive to get it finished. 🙂

@Chris-Johnston Agree with you very much on this: "collaboration which extends beyond team based care into genuine partnership with patients and their communities".

@Sandra-Holdsworth This is an excellent piece of work, thanks for sharing!

@Debra-Turnbull OMG I swear the universe is just testing my patience lol! That whole section of their website was non-existent in the early hours and now it's just blinked back into existence. I've snagged a copy before it disappears again. 😉

@Sandra-Holdsworth Yes, I'm keen to hear what the process was and to what extent patients and the public were involved.

The standards are on their website already - on this page - if you scroll down you'll see them briefly outlined in expandable segments. Scroll further down and there's a link to a more detailed PDF to download.

I've skimmed through it (but will read it more thoroughly before the session) and at first glance it reads like there's been significant patient input. Time will tell 🙂

@Sandra-Holdsworth Totally agree Sandra, and I think it's always interesting to see whether there are differences between different jurisdictions in how they handle the process, and how they involved patient partners.

@Alies-Maybee Many thanks for sharing Alies! This seems like a fabulous site full of resources, so I've bookmarked it to explore when I have more time 🙂

QR codes rarely work well for me, so I thought I'd post the direct link for anyone who has the same problem 🙂

https://wellspring.ca/alberta/blog/2025/02/27/upcoming-speakers-south-asian-diverse-experiences-of-cancer/

@Chris-Johnston

I was one of the collaborators that worked on this Peer Review Course, see below.

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The creation of this course was a collaborative effort between the Kidney Foundation of Canada, the Can-SOLVE CKD Network, the Canadian Nephrology Trials Network and the Canadian Donation and Transplantation Research Program with funding generously provided by the Kidney Foundation of Canada through the Kidney Research Scientist Core Education and National Training (KRESCENT) program.

https://cansolveckd.ca/people-with-lived-experience-in-peer-review/

@Sandra-Holdsworth Thanks for sharing this Sandra!! I kept getting a page not found error from the link. So I searched and found this link which seems to be the same survey 🙂

https://redcap.link/can-pcc.evaluation

@Donna-Rubenstein @Chris-Johnston Thanks Chris; thanks Donna! That did work.

@Sandra-Holdsworth thanks for sharing .This Community discussion looks like a great opportunity for people involved with all areas of health to share ideas!
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@Alies-Maybee The recording of the first talk has now been posted:

https://youtu.be/V2PxUs1BNrE?si=utp5TXOQlv3cpHFn

@Chris-Johnston Thanks for this resource. I love that there is a study looking at the influence of PE on research rather than just how to do it.

@Debra-Turnbull I totally get it, and when I say I see no tension between circle of care and need-to-know - I also believe that a robust patient consent process is foundational to both. Sadly, I think those foundations are pretty flimsy in practice.

I’ve also never seen any example of a consent repository, but in an ideal future where health systems are seamlessly connected in a way that supports rather than hinders quality care, a dedicated repository would probably be unnecessary. (Pause for wishful sigh while contemplating how far we are from that future)

Since consent is (or I think should be) a fluid thing - with the right to change or withdraw moment to moment depending on all the various factors that affect it (e.g. the patient’s perspective, preferences, circumstances, as well as their perceptions of the provider and the options presented etc.) then in an ideal world it would be rigorously captured / updated / documented in almost every conversation or encounter. Consent would be so interwoven in the record that a separate repository would be inefficient, but meta tagging would still allow independent and dedicated reporting of consent practice at every level from individual patient to nationwide.

And when I say captured, I don’t mean in the way that it’s currently captured as a haphazard tick box exercise to satisfy negligence/liability insurers - but as a core component of care excellence.

Sadly, I think we’re a long way off from that as well. Sigh!

@Chris-Johnston @Alies-Maybee Hmmm.... this year's CMA conference is pushing the political activism angle and encouraging PP's to get involved.... I think a brainstorming session is in order.

@Sandra-Holdsworth I do not know. I am not really sure what the best course of action is or what happens with petitions.

@Chris-Johnston Thank you. I do keep up with the literature however none of the researchers or clinicians reply other than the students who tend to only publish on allergic contact dermatitis in passing. I run the Facebook page “Contact Dermatitis Allergy Eczema Canada” to keep track of articles of interest and share them with others. Eventually I may want to do more when I have more time and resources.

@Sandra-Holdsworth thanks for sharing .
PAN Members - I encourage you to check this out .I have been a PP with this multiprovince program for 6 years (with other PPs) - interesting results and tremendous progress in Quebec- leading the way on 'real' scale up beyond research

@Alies-Maybee Thanks for confirming!