Discover and read the best of Twitter Threads about #patientengagement

Most recents (10)

#BuzzWords in #Healthcare that often mean nothing: #PatientEngagement, #PatientCenteredCare #SharedDecisionMaking
Studies have demonstrated for years that IF #patients are #authentically involved in #care outcomes are better, yet, too often the above words thrown out to 1
attract, yet no actions follow.
How often have you been asked your desired outcome of #Healthcare?
How often are you asked about barriers to healthcare or recommendations?
How often are plans focused only on med issue?
How often do you feel your #voice is truly #valued in 2
your own #careplanning?
How often do you feel there is collaboration between all doctors OR do you feel at times doc have competing or conflicting recommendations?

#Patients voice should be central. #LetMeHearYourVoice 3
Read 4 tweets
Bei Menschen, die schwer an #MECFS und an anderen Autoimmunerkrankungen leiden, sind 6 Gene (IKZF2, IKZF3, HSPA8, BACH2, ABCE1, CD3D) hochreguliert, welche an T-Zell-, B-Zell- und Autoimmunitätsfunktionen beteiligt sind.…
Diese Genexpressions-Biomarker könnten zur Identifizierung oder Differenzierung von Untergruppen von #MECFS-Patienten mit unterschiedlichem Schweregrad der Erkrankung verwendet werden und eröffnen Möglichkeiten für neue therapeutische Ansätze zur Behandlung von #MECFS.
Die Verwendung von Patientenrekrutierung in sozialen Medien und Probenentnahme zu Hause stellt einen neuartigen Ansatz für die Durchführung klinischer Forschung dar, der Kosten und Zeit spart und Reisen für Arztbesuche überflüssig macht.
#PatientEngagement #PPI
Read 5 tweets
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 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

#HowToDoPtEngagement #PatientEngagement
There’s also this guide by @NIHRinvolvement, good for those just starting out in #PatientEngagement. 3/24…

#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, 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… .../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
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
Sharing a few tweets of resources we've developed @clinicaltrialON in the past year to help people engage with #clinicaltrials (as participants or as collaborators on research teams). Thank you to our partners who have helped us. #talkclinicaltrials /1
Added to #TalkClinicalTrials -… - so people can hear from many perspectives about #clinicaltrials, including from participants, caregivers, and @GovCanHealth cc @Maureenchats @LMCManna @CeroniTina @LaraCeroni @HuntingtonSC @anetto @mgfrenchmph @mcintose /2
Created a Participant Experience Toolkit… to help people doing #clinicaltrials ensure participants feel more informed and valued #talkclinicaltrials /3
Read 8 tweets
Not sure where to start the discussion on this article. I am very interested in multiple aspects of this paper. First, & this is just related to this paper but the overall current climate of the treatment & care of those with #Chronicpain
#HHS #Chou 1/…
So much energy has gone into research looking to define optimal strategies for opioid tapering where is the energy being given to development of other medications that are as effective as opioids with less risk? I know this paper referenced that many #patients tapered 2/
experienced pain relief & increased functioning yet as an advocate I receive regular calls from inds where pain care has been reduced or cut off entirely w disasterous results. My kids benefit from #opioid #pain meds. I am nor are they opposed to the utilization of other meds 3/
Read 13 tweets
This #WorldCancerDay find out how we help facilitate and regulate cancer research in the UK.
Our Research Ethics Committees (RECs) review and approve around 6,000 studies every year, many related to cancer.…
Richard Stephens is entering his third decade working as a patient advocate and ensuring patients are involved in the design of cancer trials. Read his blog:…
Read 7 tweets

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