Ok. Thx, Ron. Hopefully someone will post what went on at the uoft class on PAN ...

Kathleen, yes. All is not lost. I had occasion to alert 2 groups I am involved in nationally who are looking to do something about it. I will keep posting on this. I am not sure what we can do as PAN since we do not advocate per se. We can certainly educate so perhaps that is something. To that end, I posted the link to this enlightening panel on the subject in hopes our colleagues would listen in and participate in these discussions locally. Any other thoughts from anyone?

Thank you Carolyn... and all of your patient advisory colleagues for 'groundbreaking' engagement/partnership on our 'Left Coast' -- LOL!
As a non-medical relative 'newbie' to patient/family/public 'engagement', I still have much to learn, but with support from groups such as yours and PAN, and with the encouragement and support from some very dedicated staff people employed in our healthcare systems, we are seeing visible beneficial progress and greater sensitivity for patients.
Congrats on your first decade PVN!

Hi Troy, Sorry about that! Thanks for the quick head's up. I think I've fixed it above with a LINK to the pdf. Let me know if this works! Below is a blog that John Ballatt and co-authors have created to follow the themes of Intelligent Kindness through COVID times. Best wishes. Stay safe. Cheers, Carolyn

https://intelligentkindness.blog/

Thx much for starting this discussion thread, Annette.

I must admit that (despite) covid19 challenges it was a big surprise to me when the Arthritis Society decided to dissolve the Patient Partners in Arthritis (PPiA) group of volunteer patient partners associated with
The UofT rheumatology associated medical
students training program. It would seem (altho I have not been fully informed) that
this was a decision made well before the patient volunteers themselves were informed.

I for one am somewhat dismayed given the valiant attempts made by patient partners as well as UofT faculty & students to make the teaching sessions compatible in a live web video environment.

The medical teaching environment (much like the rest of the world) must get used to taking every opportunity to continue to learn from patients w-out taking extra physical risks. International web based technologies offer a prime & secure opportunity to demonstrate how this can work on a planet that has allowed itself & its many species to come to such a risky relationship with viruses once again. The viruses are trying to stay alive just as humans are...perhaps "homo sapiens" are the species putting themselves most at risk by lacking in such cooperation. 🤔

Health technology in Canada (tho not w-out its own difficulties) offers an opportunity to medical education & patient health management; one of Canada's premier medical schools (UofT) & dare I say a well known Canadian patient health organization (Arthritis Society) has decided to lockdown a prime example of how patients can & do step up to the plate "voluntarily" to share, instruct & support a health system that has been in dire need of modernization for some decades (not that volunteering should be the situation but alas it is). 😷

If anyone thinks I am offbase in my perspective speaking as a patient with moderately severe to severe osteoporosis & OA feel free to tell me.

Courtesy of Covid 19 et. more to come variants we all face a health care system for seniors that is in major decline & the rest of the patient population (patients & providers) are continuously in need of a more appropriate health care system...medical education included.

Patients & providers (in the long run) must partner up to face up to one of the most serious pandemic challenges in a century. Public health on our planet demands our cooperation.

Why dismiss/discontinue yet another example of patient/provider/trainee cooperation when it is needed most in Canada's medical education & healthcare instruction, management & support systems. 🤔

missed it due to conflicting meetings but looking forward to link of recording. Thanks

Totally took your comments as constructive, Toby, thanks and stay well yourself.

Thank you

Thank you for that Amy

Alies, I have been apart of municipal committees which adhere to the terms of Reference time limits. Why I see it beneficial to a committee with strong bonds is it allows space for new people and new ideas breaking the idea of bias you are concerned of. All members are welcome to return to the committee after a one year break for another term. The idea is to stagger membership so you have one or two new members each year. Members may be allowed to serve a maximum of 2 terms then must take a year off before serving a third term. Otherwise it can be very difficult for new members to integrate into a committee with bias and that is overly bonded. The new member will have difficulty fitting in.

Not to sound jaded, although it probably does, "it's about time". I worked in palliative medicine/hospice care for 30 years, and have been retired for 14years! I remember a colleague and I 40 years ago trying out best to get attention to the need for palliative medicine, for policies, for education, for accountability ...as we saw the demographics...the tsunami of aged coming .... and now, finally, after all these years! Okay, off my soap box. Let's get to work and respond!

Thank you, I have registered.

It's extended to Dec 31, 2020 so you still have a chance to share your experience

Annette

Interesting how a number of us ind ways to deal woth surveys we feel are off base or slanted. Perhaps each survey should ask a question at the end to find out what we think about the survey. Thoughtss?

Thank you for the support Laurel. I'll keep you in mind and in the loop. However before we get to publishing the results we need more participants. I didn't realize how challenging it is to find people who meet the qualifications and are willing to be interviewed. I'm learning a lot being involved in projects like this.

I believe Carol Anne Alloway is speaking on both days. She's a caregiver and a really notable voice for caregivers. I was really unhappy to see no way for patients to attend because who has more at stake in integrated care than we do.

It's not a priority topic for me in some ways but it's been amazing how learning things in places we as patients and caregivers aren't expected to be, has been a benefit in other places. We're the ones who have to span the boundaries.

Pushing for admission for patients was almost a reflex action. Being told I'm not wanted makes me work harder.

Great to hear from you. The HIV/AIDS Community has been so persistent and active over a much longer time than most groups, and have had results that have made a huge difference.

The deadline for the survey is pushed back to Dec 3 so it's last chance time. It will be so good to hear from patients and caregivers about what they do, and how they got into it. Some real world data from the people who really know about patient engagement

Annette

Are there any news or improvements in having partners as co-researchers in basic science?
I would like to know how a partner can contribute to that aspect of research.

I tried to register, but "registrations are closed". I will try contacting by e-mail.

Thank you for considering taking actions in support of this Family Caregivers Declaration of Rights & Responsibilities.