this is fabulous !

@Tayaba-Khan It's very good Tayaba, and a nice length.

hey Annette - I cant see the link .. where is it

@Marion-Knutson Thanks. I had deleted my post right after I posted it, as the last part of Alies' post was not showing up on my end at first. I didn't realize anyone could still see my post, it shows as deleted on my end.

@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.

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

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

@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 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.

@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.

@Alies-Maybee Thanks for confirming!