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.

testing today

@Chris-Johnston PAN already belongs to Patient Engagement Synergist, a network of the PFMD a patient engagement overall organization that co-sponsors a Patient Engagement Open Forum each year.

You can register for the Synergist as an individual and associate with PAN as an organization as several of us have done.

@Donna-Rubenstein @Alies-Maybee @Sandra-Holdsworth

Stunned by this response:

The Spectrum Survey remains live but it 'officially' closed on October 27th. The consulting group is taking this week to review the answers. You can likely have your contribution included up until tomorrow but unfortunately I can't guarantee it.

If you haven’t had a chance to review the survey results and new policy, I highly recommend that you do.

@Chris-Johnston thanks for sharing the link.

@Donna-Rubenstein thanks for sharing, I am reading it and reply when finished.

@Diana-Ermel @Kathy-Borthwick @Anne-O-Riordan @Annette-McKinnon @Amy-Ma @Maxime-Lê @Susan-Palijan @Susan-Rich @Bernice-King @David-Wells @Dawn-Richards @Chris-Johnston @Denyse-Lynch @Sandra-Ketler and any other PAN members that wants to comment.

What are your thoughts on the SPOR Refresh Report from CIHR?

Sandra

@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!

@Alies-Maybee Thanks for sharing Alies!

This is a great article, though I admit to being torn on the topic of interoperability:

my practical side knows that this is a barrier to better healthcare and needs to be resolved - but

my cautious side suspects that - in the absence of robust legislation and oversight - lack of interoperability may be a safeguard against predatory commercial players in the healthcare industry who are aggressively keen to harvest healthcare data by any means to train their proprietary AI engines.

Hopefully development of legislation will move faster than progress toward interoperability - though both seem to be moving at a glacial pace at the moment!

@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 @Donna-Rubenstein Apologies if I caused any confusion - and thanks for the clarification Donna!

I found a poster abstract here: https://napcrg.org/conferences/2020/sessions/6557
Is that the one? Sounds awesome, would love to see the poster itself.

News of the CHIMA partnership is fantastic and would love to know more about what it entails, particularly if it includes access to their practice communities on interoperability, governance, privacy etc. - would be wonderful to know PAN has a voice there.

@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.

@Alies-Maybee Thanks for the link Alies, not a source I'm familiar with but it certainly makes chilling reading. We are cursed to live in interesting times, far too interesting.

@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.

@Alies-Maybee Thanks for confirming!

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

@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.

@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!

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

@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

@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. 😉