@Donna-Rubenstein Donna, thanks for sharing this article. It shows so beautifully the impact that one person's voice - Annette's - can make and how our voices grow over time.

@Jeanette-Smith How did you make out with your Applicant CV? I did one, however had help by the organization I collaborate with. PAN is looking to do a Webinar on this subject to assist our members. Stay tuned.

Excellent, I will look forward to reading it. Thanks for sharing.

@Alies-Maybee THANK YOU!!!! 🙂

Would be great if we could get one of these Planning …. grants. Maybe showcasing the SPOR Refresh Report PAN completed for CIHR. Or our work with CDHE, CAHSPR, etc.

@Chris-Johnston thanks for sharing, Diabetes Canada is doing great work with Engagement and Partnership with people with #livedexperience

@Sandra-Holdsworth Thanks for sharing the paper and opening the discussion Sandra!

I’ve been pondering this over the past week having read both the paper and several linked articles.

First, I have to confess that I love language and don’t like to think of any word being banned per se, but thoroughly agree that we need to choose words and terms with care for the context in which they will be used, and mindful of the myriad connotations they carry. While moving away from any familiar terminology often requires an uphill struggle toward widespread adoption, it can prove a powerful means to provoke reflection and establish new norms.

I have no strong attachment to the ‘stakeholder’ term and understand the negative connection. However I was intrigued that the paper made no reference to any discussion, consultation or collaboration with First Nations or Indigenous organizations to ascertain their preferences for an alternative term. The MuSE group is described as diverse, but having read their newsletters, papers etc., I could find no indication of whether the group included indigenous members. I know that they conducted a survey to help identify new terms, but couldn’t find any indication of whether they’d captured demographics to determine whether the survey had reached any indigenous communities. Of course I’m inferring from lack of information which may be entirely wrong, it just seems an oversight not to mention it.

The BC government site referenced in the paper states that it’s more appropriate to refer to indigenous peoples as partners, though they also don’t mention any consultation, so it still leaves me wondering whether any consultation has taken place, and if not, why not? If anyone is aware of consultations that have taken place, please let me know, I’d love to hear the outcomes!

In the absence of which, my instinctive reaction is that partner feels stronger and is a more intuitively understood term than interest-holder. The rationale given for rejecting it is poorly framed and I suspect not fully explored. Particularly as it was the preferred option identified in their first survey - as confirmed in their Sep 2023 newsletter. Then for some unspecified reason they chose to run a further survey and settled on a different result.

For myself, I certainly claim the title of partner even when it’s not offered, as I think it communicates how I expect to be treated and how I choose to contribute.

It’s an interesting topic with ramifications for everyone involved or hoping to become involved in healthcare research, quality improvement, governance or policy making - and one that I think will take some time to achieve consensus.

@Chris-Johnston good resource and encouraging.

Thank you Donna, its great to be on the PAN forum! Really appreciate your post!

@Sandra-Holdsworth @Donna-Rubenstein Absolutely agree that metrics are hard - though I think the BC Renal report could have tried a little harder - even reporting how many research projects involved patient partners, and how many patient partners were attached quality improvement and governance initiatives would have been more acceptable than how many are registered or on the mailing list.

It makes me wonder if PAN couldn't start the ball rolling with a survey that we could use across PAN members as a pilot, but then recommend that organizations use to measure their own level of partnership. Questions like -

how many research projects have you been involved in over the past 1/3/5 years
how many what was the highest level of involvement experienced (ref IAP2 levels) what non-research activities have you been involved in (quality improvement, governance, advisory groups etc.)

And so on - I'm sure we could brainstorm about 10 key questions that would give us a pretty good picture of how patient partners are currently involved.
We could also use it as an opportunity to identify the organizations most actively involving patient partners. I think that would make an interesting project, that could result in a useful tool, and possibly a paper on the topic.

@Sandra-Holdsworth Your response resonates with the challenges I am seeing as well. Significant collaboration may be required to develop patient leadership to make patient-identified research gaps a priority. Thanks for your comment.

@Annette-McKinnon Hi Annette: I am currently doing my third review for a medical journal, and they are asking for the names of other people who would be interested in doing reviews. If interested parties provide their name and e-mail address, I can submit the names. My e-mail address is suzannedeliscar@yahoo.ca if sending information via e-mail rather than posting is preferred.

@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 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

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

@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 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.

Bravo @Jeanette-Smith .I cant wait to read the article .