Trying to live life (with #arthritis along for the ride) to the fullest! Posting & passionate about #research, arthritis, #patientengagement. Opinions my own.
Sep 1, 2022 • 8 tweets • 5 min read
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
Feb 20, 2022 • 8 tweets • 9 min read
Sharing a short 🧵 of #PatientEngagement in #Research resources co-created by & approaches to working w/ #PatientPartners in @cpn_rdc. CPN is funded by @CIHR_IRSC's Strategy for Patient-Oriented Research initiative & I've had the privilege to help with its #PE work .../1
#PatientPartners are part CPN's governance as co-chairs of and members on all committees. More about CPN here cpn.mcmaster.ca, and its #PatientEngagement Cttee is tasked with carrying out its #PE work. The Cttee is mostly ppl who live with #Pain & a few researchers...2
Feb 16, 2022 • 9 tweets • 11 min read
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
