📢 There's still time to register for our free public event on Friday!
#patientsincluded #f2f #webinar #cancerresearch #clinicaltrials #translationalresearch
📍Cambridge👉 bit.ly/ECMD25
🌍 online👉 bit.ly/ECMD25online
Webinar link 👀 bit.ly/ECMD2025webinar
@crukcamcentre.bsky.social @ecmc-uk.bsky.social
Curious how #CancerResearch turns into new treatments?
📢 Reserve your ticket NOW for Experimental Cancer Medicine Demystified for expert talks + patient stories
🗓️ 3 Oct 10-3.30
📍Cambridge 👉 bit.ly/ECMD25
🌍 Online 👉 bit.ly/ECMD25online
#ECMD2025 #PatientsIncluded
@ecmc-uk.bsky.social
maybe we can magnify this tweetchat into a townhall meeting or a bioethics forum or another #HealthcareSocialMediaSummit #HCSM of #healthXPH di masamang mangarap... so that #PatientsIncluded would understand what goes into setting professional fees.
President Trump just dropped a "nuclear bomb" into healthcare : 60+ Industry Giants Join Forces to Put Patients — and Their Data — in the Driver’s Seat. #patientsincluded www.linkedin.com/pulse/boom-t...
“ …her doctors…told her they didn’t do deficiency testing, but Alimonti insisted. ‘Nope,’she said. ‘I’m not starting it until I get the test back.’”
#oncosky
#patientsincluded
In 2010, Lucien Engelen of the Netherlands coined the term #PatientsIncluded which was a global challenge for medical conferences to welcome the patient voice “on the program, on the stage, & in the audience...”
It's what led to this moment for Jackie Ratz: 💕
myheartsisters.org/2025/05/04/a...
A crown, a crowd and a standing ovation myheartsisters.org/2025/05/04/a...
"Last week, I watched a heart patient get a standing ovation from an audience of physicians at a cardiology conference..." That response could never have happened in the past - until conferences embraced #PatientsIncluded
My first #patientsincluded shoutout at #adpd2025 goes to UCB for an advanced Parkinson’s trial with a “patient council” that co-creates all study materials and advises on: reducing study visits, implementing a transport service, and encouraging at home PRO completion
Patient partners aren't study subjects. Patient partner research has a compensation crisis.
We must do better to promote equity and ensure that patient partnerships are respected and compensated.
Important article below:
www.bmj.com/content/388/bmj.r381
#PPIE
#PatientsIncluded
#AMR
I've said it a few times this week. The new #UNGA political declaration mentions participatory approaches, including patients
In the UK, we have the NIHR Involvement Guidance. This should be relevant in all countries
Check out their resources:
x.com/NIHRinvolvem...
#PPIE
#PatientsIncluded
#AMR
As this New Year begins, I'm pleased to feature in this Medscape CME resource as a patient with firsthand experience of #AntimicrobialResistance #AMR
Read more: www.medscape.org/viewarticle/...
#MedEd
#PatientsIncluded
#theAMRnarrative
Happy to share this new article on academic publishing and how patients navigate this often barrier-laden world, both as readers and increasingly, authors too. #patientengagement #patientsincluded #healthcare
cancerworld.net/academic-pub...
Is Patient & Public Involvement on your agenda for #AMR?
Useful docs! 👉
#PatientsIncluded Charter: patientsincluded.org
@who.int Task Force of AMR Survivors Meaningful Engagement: www.who.int/publications...
@nihrarcs.bsky.social INVOLVE: www.nihr.ac.uk/ppi-patient-...
#AntimicrobialResistance
This is such an important point for our community and I hope many other conditions can follow the lead of ALS with #patientsincluded
A great improvement in access post covid with the live streaming. About ten years ago I got in trouble for live tweeting breaking results but I think with #patientsincluded we’ve come a long way. Man did it hurt my thumbs on an iPad so this is better for everyone!
🔬🧒🏥 So proud of my friend and colleague Lindsey Wahlstrom-Edwards for her breathtaking talk "What Death Might Teach Us About Better Clinical Research" highlighted today in Clinical Leader
#patientsfirst #patientsincluded #funlab
www.clinicalleader.com/doc/what-dea...
An expanse of lake extends from a beach. The sky is dominated by puffy clouds that vary from intense dark gray to brilliant white. A tree grows to one side of the frame.
Nice to see you here, where I also see @jfreemandaily.bsky.social @coffeemommy.bsky.social and some others from the #patientsincluded movements.
Here's a palate cleanser, of Lake Washington in #seattle.
Wake up babe, new Declaration of Helsinki just dropped 📄
🤝 “Subjects” ->”Participants”
🧑🏽⚕️ Applies beyond just physicians
❤️ Engage participants before, during, after
🦠 Emergencies don’t obviate principles
🌎 Adds environmental sustainability
#patientsincluded
www.linkedin.com/pulse/2024-v...
And PLEASE, generous people who are asked to $pon$or health conferences... ask if patients are included before getting out your checkbook. You hold a huge amount of power in getting meeting leaders to see the importance of #patientsincluded !
Dusting off the beacon.
In 2012 Dr Lucien Engelen found himself at a health conference with 1000’s of delegates, but no patients. He vowed to no longer attend those which had no patients in the audience, on stage, and organising.
And so #patientsincluded was born
blogs.bmj.com/bmj/2013/08/...
You missed @virusesimmunity.bsky.social ...immunity researcher at Yale. Advocate for #LongCovid research and #patientsincluded
Where are these communities of patients/researchers "meeting" these days since demise of FB, Twit and other platforms that used to grant wide access? #patientsincluded
T2: Yes, #Apple and #Amazon are big news. But #PatientsIncluded certification made headway in 2018, for all the right reasons in #HealthIT. I am a huge fan of #AI & #MachineLearning & feel we've only scratched the surface, but incl. #patients? Priceless ❤️#hitsm
The BC SUPPORT Unit has absolutely ruined me to other ways of operating: the event could easily have been designed to be #PatientsIncluded, but it wasn't. Only two people in the room identified themselves as older adults, and they were researchers…
These rights information materials are the fruits of 7 months of co-creation & user testing with my amazing team—including 2 patient partners, a clinical nurse educator & a legal expert. They materials are free to download, print & share, and they're #PatientsIncluded accredited.
T4: A great initiative is #PatientsIncluded, #HIMSS, #s4PM, #HDpalooza - bringing patient / caregiver voices to conferences- it’s finally happening! #hcldr
T2: The Risk is always in payment models. No risk in communication- my Uncles practiced it 24/7/365 for 50 yrs!! #hcldr #patientsincluded
That's because you are an amazing human being + MD! #PatientsIncluded
Can we tie it to C-Level salaries? Theres an idea!!! #RestoreTheHumanity #PatientsIncluded
#HITsm
