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 🙂

Thanks Amy, I am a co-author on the study, so pleased to see you post it.

(Maybe not co-author but collaborator or patient partner - not positive)

Annette

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

My feeling is that as patient partners in research, we need something of a "job description" for each project detailing out what we will do and when this occurs in the project; whether we are going to be cited as a co-author or contributor and what that means and how our name/relationship will be used.

I, too, have experienced similar situations to Annette's where my name is used with the wrong affiliation; or where I have done substantive work on something and I am not acknowledged and so on. It is messy out there but I truly feel virtually none of this is due to ill will but due more to a lack of knowledge and in some cases outright incompetence in running a project.

I am interested in what we think patient partners need to be trained up on and one element is the possible roles we can perform as a partner in research. This is to Susan's point about knowing what being a collaborator can mean specifically.

Alies

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

Denyse, I'm again re-reading this thread. I love your approach and think it is great advice for newcomers to being partners in research:

"The key is listening, observing and asking questions that bring the discussions back to the question - is this putting the "patient-first" and if so, how? What are the benefits? How does this help, not help? Does it create any barriers, obstacles or leave gaps?"

I found during my first experience on the Research Management Committee evaluating grant proposals that asking questions from the patient perspective was a powerful way of re-focusing the group. It also meant I didn't feel the need to be expert.

Keep us posted on your progress. Also, check out the course on PiR under Opportunities. It is a good one that involves lots of discussion online. Cheers! Alies

I agree. I realize that there is a genuine interest on the part of HCPs with some being responsible for starting support groups such as Type 1 Diabetes Think Tank and doing so very successfully. Working with patients directly over time has resulted in sincere empathy for patients and a real desire to make a positive difference for those living with challenges in their daily lives. I believe research dollars are much more likely to result in better outcomes when research addresses patient's voiced challenges. I think that those researchers who have access to blogs or or support groups are in a better position to identify and seek to research patient's articulated needs. It seems like a good research topic to develop strategies that yield genuine patient engagement.

I took this online course last year and found it very interesting. The presentations were well done and stimulating and unlike most online forums,there was lots of exchanges of information between participants - it made me think about how much this area has evolved and how it is current evolving as people's perceptions change about the value of patient engagement

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!