Thread by @brynphd

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

You can use this template to org thoughts for #PatientEngagement plan: Terms of ref doc to outline level of engagement, mutual expectations from @NL_SUPPORT_Unit.

(You should also get #PatientPartner input once onboard.) 4/24

onlinelibrary.wiley.com/doi/full/10.11…

#HowToDoPtEngagement

Now, bring #PatientPartners onboard! You can recruit via support groups or panels: see Table 2 from @Just_Greenwood for approaches, timelines, benefits, challenges. 5/24

researchinvolvement.biomedcentral.com/articles/10.11…

#HowToDoPtEngagement #PatientEngagement

You can also put out public call for #PatientPartners - @CHImbca @CarolynShimmin have tips for constructing an ad here. 6/24

slideshare.net/CHICommunicati…

#HowToDoPtEngagement #PatientEngagement

In recruiting, consider diversity, equity and inclusion in #PatientEngagement, and listen to this convo from @MattersEngage @jenjohannesen @VinaMohabir @NavPersaud. 7/24

mattersofengagement.com/equity-diversi…

#HowToDoPtEngagement

And, consider culturally safe Indigenous #PatientEngagement, via this @BCPSQC resource. 8/24

bcpsqc.ca/resource/cultu…

#HowToDoPtEngagement

In your #PatientEngagement ad, include info about compensation.

(You budgeted for that, right?)

I use the @_DiabetesAction one, but you might find another one useful. 9/24

diabetesaction.ca/wp-content/upl…

#HowToDoPtEngagement

So your #PatientEngagement ad worked; you have people interested in partnering. Great!

To help prepare them, you can share this @Frayme_Cadre resource so they can think about Qs they might have for you. 10/24

drive.google.com/file/d/14qCosw…

#HowToDoPtEngagement

Similarly, this handy @SCPOR_SK #PatientEngagement one-sheet has versions for different team members - questions to ask, things to look out for as you build this new partnership together. 11/24

scpor.ca/patient-partne…

#HowToDoPtEngagement

And before you get too far: Assign point person for partners, then have private convo re: needs (incl. compensation). What works for them? 12/24

To guide you, @TO_dpr @seastarbatita @PatientCommando got you:

jospt.org/doi/full/10.25…

#HowToDoPtEngagement #PatientEngagement

Depending on proposed #PatientEngagement, there may be formal meetings with minutes, agendas, etc.

This @HealthConsumers guide @TO_dpr found is nice intro for some of the formalities we take for granted in office culture. 13/24

hcasa.asn.au/wp-content/upl…

#HowToDoPtEngagement

Similarly, you may find it appropriate to use this @AbSPORU_PEP primer on ethics in governance and conduct (for all at the table). 14/24

absporu.ca/wp-content/upl…

#HowToDoPtEngagement #PatientEngagement

Finally, you should have doc to help w/ onboarding, w/ glossary and proposed research stages.

You could also use this in-depth @PHC_PERC guide adapted to your work. 15/24

perc-phc.mcmaster.ca/wp-content/upl…

#HowToDoPtEngagement #PatientEngagement

(Aside: I would have it available and let people contact me with Qs, so they can read if and as needed. Everyone comes to the table w diff experience and skills. Make it easy for your new teammates!) 16/24

#HowToDoPtEngagement #PatientEngagement

One Q I’ve gotten is #PatientPartners can contribute to design, recruitment, etc. Depends on involvement agreed upon, but def possible (see Table 3). Just have open discussion as team about design ideas. 17/24

onlinelibrary.wiley.com/doi/10.1111/he…
#HowToDoPtEngagement #PatientEngagement

With data collection, analysis. What is everyone’s skill set, comfort and availability?

Ex: @NCRI_partners roundtable to present research, solicit feedback, share concerns. Outlines day, shares eval Qs. 18/24

bmjopen.bmj.com/content/10/9/e…

#HowToDoPtEngagement #PatientEngagement

(Aside: Yes, there is resp to participants to ensure anyone on team has approp skill to conduct study within guidelines. But any team member could need training to fill this role. That's not unique to #PatientPartners.) 19/24

#HowToDoPtEngagement #PatientEngagement

Alright, you’re all done, and your team has decided that one #KnowledgeTranslation output is journal article. Practical guidance from @pash22. 20/24

https://twitter.com/pash22/status/1433831732353064965?s=21&t=rg3p5zvX5skZeS-5GqQmxQ

#HowToDoPtEngagement #PatientEngagement

Of course, don’t forget to offer authorship. How to go about that?

Check out @TO_dpr @katebirnie and colleagues' paper, with practical tips on discussing authorship and acknowledgement. 21/24

researchinvolvement.biomedcentral.com/articles/10.11…

#HowToDoPtEngagement #PatientEngagement

If you’re writing for people not in your field, here’s @BCSUPPORTUnit guide (really, a mini, self-paced workshop you can do to clarify how you describe your research, while also pointing you to resources). 22/24

bit.ly/3tSVJCj

#HowToDoPtEngagement #PatientEngagement

You would plan this at project start, but I’ll put it here. How do you know if #PatientEngagement was impactful?

The folks at McMaster @julia_abelson have toolkit that walks you through steps of planning and conducting eval. 23/24

evaluateengagement.ca

#HowToDoPtEngagement

Finally, keep building relationship w your partners. You’re teammates now! I’ll leave you w @TO_dpr sage words. 24/24

bjsm.bmj.com/content/54/23/…

Thanks for reading! Anything I miss? Let me know!

#HowToDoPtEngagement #PatientEngagement

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