@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.

Thanks @Chris-Johnston look forward to checking it out.. There appears to be more PP interest in the topic -a sign of a growing , capable community ..

@Sandra-Zelinsky Many thanks for posting Sandra - sounds good to me! I'd love to attend but have a medical appointment that conflicts. Is there any chance that it's being recorded?

@Donna-Rubenstein Totally agree Donna! I’ve found more opportunities outside BC in the past few years, but I keep my eyes open and stay connected to other patient partners in BC I’ve met over the years. I sometimes wish there was a provincial chapter of PAN to help us coordinate our efforts, but we keep calm and carry on as best we can.

testing today

Thanks for the share. I will be listening to the podcast

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.

@Lisa-Ridgway completely agree. My wish if all health conferences are #PatientsIncluded and patient partners are on the planning committee.

@Sandra-Holdsworth thanks for sharing. This is a great podcast, suitable for so many!

@Chris-Johnston thanks Chris, Dr. Chudyk, is a great researcher and speaker. PAN is pleased to have her present her research at our next Webinar. See recent episode of As Per Usual with PAN Co-Chairs @Alies-Maybee and @Donna-Rubenstein

@Sandra-Ketler As patients, I wonder if we should be aiming to develop a new questionnaire to help identify healthcare-associated trauma? While ACES scores are useful, a consistent scoring system to identify and assess trauma resulting from negative encounters with healthcare could be a powerful piece of evidence for healthcare improvement.

@Donna-Rubenstein Thanks Donna, I've registered 🙂

@Sandra-Holdsworth Thanks for posting this Sandra, I've registered 🙂