Discover and read the best of Twitter Threads about #patientpartners

Most recents (5)

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
Great Visiting Professor talk by @Dolores_McKeen (as part of our annual @OttAnesthesia Gary Johnson Research Day)! #PatientEngagement Dr. McKeen led a @LindAlliance partnership priority setting exercise to identify the top 10 research priorities in #anesthesiology A🧵
Bringing the patient voice into healthcare and research is so important...but how do we do it in a less patient/public facing specialty like #anesthesiology? Part of the answer is to co-produce a list of priorities (click to see the whole graphic)...@CAR_PSP
As a specialty, the onus is now on us to make research teams (inclusive of #PatientPartners) to tackle these priorities.
Read 4 tweets
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
#PatientEngagement can seem overwhelming if you're new to it as a #Researcher or #Trainee. The #PE Cttee has some advice on simply talking to #PatientPartners about your research as a start. You never know the ideas those conversations lead to cpn-rdc.ca/docs/default-s… .../3
Read 8 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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