Discover and read the best of Twitter Threads about #PatientPartner

Most recents (3)

Been thinking a lot about how #PatientPartners in #Research are asked to provide a letter of support and a CV or 'applicant profile' for grant applications. These have changed a bit over the years, but I struggle with a few things #PatientEngagement .../1
First I struggle that the letter of support or CV/applicant profile (see cihr-irsc.gc.ca/e/51872.html) are very similar to what is expected of others on the research team, who usually bring really different experiences/knowledge compared to #PatientPartners #PatientEngagement.../2
.. I hope I articulate this well. As a #PatientPartner on a grant appln, I typically share very personal things about my condition/healthcare experiences. After all, I'm trying to express my support and how the research is relevant, but if I step back, I ask: to what end? .../3
Read 8 tweets
Researchers! Do you want to work w #PatientPartners? Then let’s get started.

In this 🧵, I’ll take you start to finish, and share some resources I’ve bookmarked. (This is practical, hit ground running stuff.) 1/24

#HowToDoPtEngagement #PatientEngagement
If you’re not familiar with #PatientEngagement, then an overview/guide is good place to start.

@BCSUPPORTUnit has this “menu” of evidence-informed practices and strategies. 2/24

bit.ly/392ODoy

#HowToDoPtEngagement #PatientEngagement
There’s also this guide by @NIHRinvolvement, good for those just starting out in #PatientEngagement. 3/24

nihr.ac.uk/documents/Star…

#HowToDoPtEngagement #PatientEngagement
Read 25 tweets
I spend a lot of time thinking and writing about, and advocating for #PatientPartner #compensation or #payment as part of research or other teams. I'm going to share some resources and thoughts as I've been asked lately about this 🧵.../1
For me it's best practice to offer #PatientPartners compensation (I'm going to use that term to mean the same thing as payment), and:
👉not everyone wants it - cool
👉some people will ask for flexibility in payment
👉if you don't have a budget for this, be transparent
.../2
If you're offended or defensive about my last tweet 👆re: 'best practice to offer #PatientPartners #compensation' - I'm ok with that, but you're not going to change my mind. In my experience, you represent a specific demographic that has the privilege to feel that way. ..../3
Read 9 tweets

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