@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!

This morning’s session on using AI to support systematic reviews was illuminating. The presenter highlighted progress in just the past year shows significant improvement in both sensitivity and specificity of results achieved by Large Language Models in article searches and screening.

While not yet approaching the quality of results achieved by research librarians, AI already outperforms non-experts including Phd students, novice and early career researchers and clinicians.

I find it encouraging that this is getting close to putting the tools for systematic reviews in the hands of patients, which could make patient-led research easier to initiate.

The recording will be available soon at the series link, and the upcoming sessions are still available to register.

@Sandra-Holdsworth Sorry I missed this webinar Sandra, but looking forward to watching the recording when it's available.

@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 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.

@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.

@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 @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.

@Chris-Johnston Thanks for posting this. We all need to learn as much as we can about AI as it is the future of healthcare. We are having lots of discussions about this at the PAN Board with a view to how to help us all become more comfortable with AI and our digital health future.

@Donna-Rubenstein That's good news. Thanks Donna.

@Sandra-Holdsworth Thanks for the heads-up Sandra!

I see they have recordings of earlier topics in the series, some of which may also be of interest: https://www.youtube.com/@ACTAEC/videos

@Sandra-Holdsworth @Debra-Turnbull Thank you both for the fascinating articles! I've been educating myself on all things AI but blockchain is still an area of confusion for me, these really helped - very much appreciated!

@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!

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

@Chris-Johnston good resource and encouraging.

@Chris-Johnston yikes , that is a disappointing reply from CMA- who claim a leadership position on patient engagement ( at least I thought they did) .
perhaps some thing for PPs on their advisory group to table - maybe a separate post on the forum

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

@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 the link.