@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.

@Donna-Rubenstein thanks for the promo regarding this important (to me) topic.

Health data literacy is a bit of a hard sell - not exactly sexy! Also, why should we care? We need to understand that health data of all sorts - test results, doctor's notes, images - are the basic elements used to diagnose and treat us. The quality, availability and shareability of our data is important to our care - not losing sight of the protections of our data in the meantime. I will probably get more into this topic over time so stay tuned!

@Chris-Johnston thanks for sharing recording as I missed this one. I do a lot in AI.

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

@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.

@Lynn-Ashdown Good to see and thanks for posting.

@Sandra-Holdsworth Thanks for posting this Sandra! Browsing their website I noticed that IPPIN are also hosting a series of webinars in conjunction with Cochrane Learning Live which sound really interesting:

10 Oct 2024 HEAlth caRe needs of the Deaf (HEARD): Using community-based participatory research to address healthcare access challenges of the Deaf community in Malaysia

26 Nov 2024 Storytelling for impact: Creating a storytelling program for patient partners in research

04 Dec 2024 Engaging indigenous patient partners: Exploring successes in indigenous patient-oriented research in Canada

https://intppinetwork.wixsite.com/ippin/webinar-series

@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.

@Alies-Maybee Thanks Alies!

In that spirit, I thought the following resource might be useful 🙂

In March, the US National Academies of Science, Engineering & Medicine (NASEM) hosted a 2-day workshop, and have now published the proceedings as a free downloadable report entitled:

Exploring the Bidirectional Relationship Between Artificial Intelligence and Neuroscience: Proceedings from a Workshop

One of the key findings they highlighted recognized the need for patient and public involvement:
Incorporating potential users at every stage of the design process will help build public trust and more effective systems.

For more info including a one-page overview, the full report, a short explanatory video, and a link to a recording of the original workshop, visit the link above.