Top Tweets for #HowToDoPtEngagement
Wow! So appreciate your work on putting this together! If you’re wondering #HowToDoPtEngagement, here is a resource for you!
@couragesings Honoured to have met the #HowToDoPtEngagement bar with this paper- I know it’s a high standard. 🧡
Adding this great paper by @TO_dpr et al on how to approach authorship in the context of #pt oriented research.
https://t.co/6bPlIDib5Y
#HowToDoPtEngagement
We're published! "Guidance on authorship with and acknowledgement of #patient partners in patient-oriented research" https://t.co/4npAmhCuB4. Co-created by patient partners & researchers of @cpn_rdc cc @katebirnie @DrJenStinson @therese36735622 @delanelinkie @CIHR_IMHA @CIHR_IRSC
Looking for more resources? I have an epic thread of research, guides, tools under the #HowToDoPtEngagement hashtag that I add to when I have a chance.
Feb 22 #patientengagement A crowd-sourced collection of 'stuff' on #howtoengagepatients - https://t.co/7XZklND9OF. Put together by @brynphd with input from the community including @couragesings @alexhaagaard @GraceCordovano @kylierpeacock @patientlibrary @HeartSisters & more
@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. ;)
[Article] “I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People https://t.co/G2YsLgNaoj
HT @FullLivesESRC @LucyBray9
#HowToDoPtEngagement
One-size-fits-all models cannot be used to replace actually communicating and developing relationships with #pt partners involved in projects. #HowToDoPtEngagement
Terminology & #HowToDoPtEngagement: there is no magic formula. If you think ‘well, my last #pt preferred X, so therefore I will use X term with ALL #pts,’ you’re doing it wrong.
ASK #pts what they prefer! There isn’t a one-sized-fits-all model!
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
How about in 2020, meeting days & times are set *with* #pts instead of pre-determined? #HowToDoPtEngagement
83 unique patient partners and health care organizations came together to share tips on #HowToDoPtEngagement. Check out this amazing crowd-sourced collection: https://t.co/8FoQenzEQ1. Special thx to @couragesings for jump starting the threads! #Pteng #patientengagement

@chrissyfarr Important to involve patients at every level at all times. None of this "we're all patients" nonsense which is the usual excuse. See: https://t.co/0A4UnP6p5x
See also the best way to engage patients: https://t.co/4ZqpuAldB1 #patientsincluded #howtodoptengagement
For those who missed my #patientinvolvement in #rheumatology presentation at #BSR19, or just want a recap. It showcases #PPI at @KCLImmunoMicro, @KingsCollegeNHS, @VersusArthritis, @eular_org and @bmj_latest. https://t.co/4Y9RBwlLwR
So important for patients to #DeclareYourRare - and so important for organizations to be listening!! #CareAboutRare #collaboration #HowToDoPtEngagement
#RareDisease Leader Liz Marfia-Ash explains @GRIN2Bsyndrome aims to support families, promote awareness & fund research. They're working to establish a research grant cycle & collaborating with other patient groups related to GRIN2B gene https://t.co/rzmw5cJF5O #CareAboutRare
Like many of my fellow #raredisease #zebras, I have a lot to say. Who's listening? #HowToDoPtEngagement
#HowToDoPtEngagement for GPs? There’s a toolkit for that 👇
[Toolkit] Patient and
public involvement: a tool kit for GPs https://t.co/DCdxP420SA @TheBMA
#HowToDoPtEngagement
Instead of making the public come to you for feedback, what if you went to them? Find out how these researchers made the effort to reach people.
And yes - they also paid them for their time!
#HowToDoPtEngagement
[Research] Patient and public involvement mobile workshops – convenient involvement for the un-usual suspects https://t.co/2oSBb0cOOr
#HowToDoPtEngagement
[Commentary] "Patient partner compensation in research and health care: the patient perspective on why and how" by @TO_dpr @seastarbatita @PatientCommando K. Strain https://t.co/QZmZvTTOLb @PXJournal
#HowToDoPtEngagement
@wareFLO @helenvmadamba @radmrsgomez @jimlopez875 @lisadbudzinski @ShereesePubHlth @bbhomebody @BarbyIngle @ReinhartG @denniskenez @amariedauwer @pfanderson @anthonynotleon @burtrosen @CoherenceMed @misterchambo @innonurse @QlikDork @StuckonSW @EMRAnswers @RebeccaFein @endocrine_witch And worth following up with #hownottodoptengagement and #howtodoptengagement started by @couragesings #HealthXPh
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