Top Tweets for #HowNotToDoPtEngagement
As I search the #HowNotToDoPtEngagement hashtag again to get current examples for a presentation, I just want to say - these tweets matter! Thank you for continuing to share your experiences, so everyone can learn and do better together. #ptengagement #codesigning #caregivers
When you see a #PtEngagement opportunity for a significant time investment & no mention of compensation. 🙄
This is #HowNotToDoPtEngagement. The amount of time requested, no mention of pay = not ok.
#HowNotToDoPtEngagement
"We've always NOT offered compensation to #pts & no one seems to have an issue with this"
‘We want to work with #pt partners. Our meeting times are already set, so you have to fit OUR schedule. That’s because we really didn’t *want* #pts, but someone told us we needed to, so here we are.’
#HowNotToDoPtEngagement
#HowNotToDoPtEngagement: get funding for COVID Research & want #ptpartners on your team, but have budgeted nothing for compensation.
To this, I say STOP. STOP taking advantage of #ptpartners.
When a journal publisher emails your manuscript patient partner co-author asking for their degrees and institutional affiliation and tells them they are holding up the publication process for not providing that info. #PatientEngagement #PE #HowNotToDoPatientEngagement
Horrified at this health screening questionnaire disguised as a birthday card & sent to Mum by her GP Practice... Thoughts tweeps? @mgtmccartney @Trisha_the_doc @Laconic_doc @trishgreenhalgh @DrTerryQuinn
Currently involved in an email convo re: authorship. Someone who did not directly observe the contributions of patient partners is challenging their co-authorship on the basis that they’ve been offered compensation. Please send strength so that I do not explode with rage.
Emailing a #pt for the first time? #ProTip: as hard as it seems, maybe include the #pt’s name in your opening greetings? No name is rather impersonal.
#HowNotToDoPtEngagement
@TO_dpr I’ve shared lots of resources with #HowToDoPtEngagement - research, guides etc. #HowNotToDoPtEngagement is a good place to check out for things not to do. ;)
Deciding together *with* #pt partners is much different than deciding and asking #Pts after the fact. The latter shows clearly #Pts are an afterthought; the former shows a much more collaborative relationship.
#HowToDoPtEngagement
#HowNotToDoPtEngagement
If you want some great insight on patient advocacy - specifically how those in power often get patient engagement wrong, follow #hownottodoptengagement and @couragesings
(Also, to see what it looks like to get it right, follow #howtodopatientengagement)
There's a shout out to the #hownottodoptengagement movement towards the end of the pres @couragesings @alexhaagaard @researchgirlca
It’s great #pts can be a visual reminder about the reason behind the work of improving med system, but come on. I’m not a statue. My role isn’t meant to sit there & not be able to take part in the conversation.
#HowNotToDoPtEngagement
Expect #pts to speak up at meetings without creating the environment where this is possible. Do not recognize the power imbalance that exists in these settings.
#HowNotToDoPtEngagement
Sign up for e-transfer to reimburse expenses. Receive cheque in mail. 🤦♀️
#HowNotToDoPtEngagement
Let others develop their skills *except* for the #ptpartners! After all, it’s key to maintaining the hierarchy & power imbalances. 🙄
Where’s the professional development fund for #pts? Oh right...there isn’t one.
#HowNotToDoPtEngagement
Making #pts fit your framework (and thus not accommodating our needs) vs co-creating a framework are two different things. If you are not open to actually doing the basics, then don’t ask for #ptpartners for your project!
#HowNotToDoPtEngagement
Was your framework co-created with #pts? No? Anyone see a problem?!
Working with #pts is different than working with others. Our needs are different.
#HowNotToDoPtEngagement
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