Désoler si le texte n’apparait pas au complet, car je ne suis pas habitué avec le format du site, mais si vous copiez le texte Word du site et que vous ouvrez votre Word et coller alors le texte apparaitra au complet.

Bonne journée

I think it sounds like a great plan 🙂

thx for this Annette.

Bristol Meyers Squibb is providing REWARDS to patients for their trust in the BRAND via CONTESTS ... as unpalatable as this might seem it is not a new concept tho sometimes a hard pill to swallow in Canada. Tongue out An additional article outlining how PATIENT SATISFACTION is the next competitive battleground for health care is a reality we all have to deal with it seems see: http://www.miramedgs.com/ealerts/673-patient-satisfaction-is-the-next-competitive-battleground

warm regards,

anita l-l

Congrats Annette and RIGHT ON.

Denyse 🙂

Statistics paint a powerful message. We have a lot of work to do to change these metrics.

Lorraine

A good set of questions. Thank you Lorraine.

I loved this talk - Jennifer is terrific. I'm moderating a panel at the Brain Partners Conference in Toronto where Jennifer will speak on this again. Looking forward to what a room full of researchers will think! No one has any answers so I think the call will be for researching a 'science of engagement'.

Bingo Amy!

Hi Amy,

I am sorry I missed you for breakfast. I went to the 21st floor for breakfast hoping to see you. I realized later that maybe this was just for presenters. I could not find Kirk Kelly on the list of presenters for Friday so perhaps this was a pay to participate session.

Hopefully we will meet up during this conference.

Lorraine

Denyse, I realize that I am too terse in my explanations. Will try and do better. The goal is to find 1-3 questions we can suggest providers ask caregivers to prompt a conversation to uncover caregiver needs.

I did receive some good feedback from members both online and off line. In the end I summarized the 3 questions that providers should consider asking caregivers:

• How are you coping today?
• What is the one thing that you find difficult about having the additional role of providing support and care for your (parent, spouse, child, ...)?
• How has the rest of your life been affected by your role as caregiver? Work, friends, family, health...

The idea is to make it simple for providers to start a conversation with caregivers about how they are doing so as to identify what kind of help the caregiver needs for themselves. This is in addition to any help the caregiver needs to actually take care of their patient.

Hope that helps and any further thoughts you have are most welcome. Alies

I am involved in caregiver projects with The Change Foundation in Ontario. Thanks!

Je participe à des projets de proches aidants avec The Change Foundation en Ontario. Merci!

Thanks for this Carolyn- I am looking forward to reviewing this very comprehensive document. I would like to have a better understanding of how to use co-design in a variety of health care settings or other consumer situations

Jeanne

Completed survey - I'll look forward to seeing how this project evolves!

Thank you Annette. You are a great resource. Frank Gavin and others members of the PPAWG would probably welcome seeing this material. It should be considered as material for discussion at our March meeting. This was a topic that generated a lot of interest at the PiR course.

Hi Donna,

David is a treasure, perhaps the most insightful and articulate patient leader on the planet. I met him in 2011 through the Patient Voices Network in BC. They had the amazing courage to organize an annual gathering of volunteers, and brought David in as speaker, his only trip to Canada [we need to bring him back!!].

What a revelation! A dedicated meeting for dozens of patient activists, all networking in one room was pretty amazing. But David truly galvanized most everyone who attended. He validated what we did and how we dreamed of contributing real value to the healthcare system as we had encountered it.

David and I have now met on a number of occasions in London, when my patient activism has taken me there. He has been doing this sort of work for nearly 30 years in NHS England, starting out with mental health collaborations, but including policy, training and most recently true system transformation in Sussex musculoskeletal services (Brighton). His humility, understanding, generosity and respect for the lived experience of patients and clinicians truly shine.

PAN members will find much of interest in years of blog entries at futurepatientblog.com He knows many Canadian patient leaders through his twitter accounts @DavidGilbert43 and @DGPoet. David struggles with the stress of social media and is presently tweeting less about patient leadership and focussing on writing more poetry.

Thanks, Donna, for bringing David to PAN's attention. Everyone should read this blog as foundational for our work: Patient's Dozen.

Best wishes to all,
Carolyn

There's an article about this that has appeared in several papers. Here's the link

https://evidencenetwork.ca/making-our-pan-canadian-health-organizations-fit-for-purpose/

Thanks so much for these great insights! I really like the livestream idea from an accessibility standpoint.

Totally agree about opening up the door to more patient participation in conferences. Interesting idea of potentially having access to a pool of money for patients who have abstracts accepted by conferences.

Strikes me that this is going to require a strategic, multi-pronged, multi-organizational approach to get to a point where patients actually feel like they are truly included.

I will include your responses in our summary work along with what we heard on the twitter thread. We are clearly hearing a strong need for more patient voices at conferences. We would like to partner with patients in planning a process to take a step in that direction with the knowledge that it is just one step by one organization...maybe our small ripple can turn into a wave!!

Thanks again for your very valued input! Angela