You missed @virusesimmunity.bsky.social ...immunity researcher at Yale. Advocate for #LongCovid research and #patientsincluded
New starter pack! First attempt at curating a community of amazing #womeninmedicine
Who else should I add? #MedSky
Who else should I add? #MedSky
November 11, 2024 at 2:24 AM
You missed @virusesimmunity.bsky.social ...immunity researcher at Yale. Advocate for #LongCovid research and #patientsincluded
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
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
March 2, 2025 at 6:34 PM
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
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
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
Read more: www.medscape.org/viewarticle/...
#MedEd
#PatientsIncluded
#theAMRnarrative
January 9, 2025 at 11:34 PM
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
Read more: www.medscape.org/viewarticle/...
#MedEd
#PatientsIncluded
#theAMRnarrative
Delighted to announce this new free-to-attend collaborative event focusing on approaches to patient engagement co-hosted by @piper-uhn.bsky.social and Women's College Hospital. More details here: www.linkedin.com/posts/victor... No registration link or website yet, please just save the date + share!
February 6, 2025 at 5:43 PM
Delighted to announce this new free-to-attend collaborative event focusing on approaches to patient engagement co-hosted by @piper-uhn.bsky.social and Women's College Hospital. More details here: www.linkedin.com/posts/victor... No registration link or website yet, please just save the date + share!
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
April 2, 2025 at 8:00 AM
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
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
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
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February 27, 2025 at 7:55 PM
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
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
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/...
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/...
a man in a cape stands in front of a batman symbol
Alt: a man in a cape stands in front of a batman symbol
media.tenor.com
November 13, 2024 at 4:13 PM
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 !
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...
cancerworld.net/academic-pub...
Academic publishing is a maze of tests and barriers for patients as researchers and readers | Cancerworld Magazine
Once solely engaged as participants in academic studies and research, patients are increasingly becoming more involved at several stages of the research process. From helping large organisations asses...
cancerworld.net
December 6, 2024 at 4:35 PM
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...
cancerworld.net/academic-pub...
Would have been an excellent conference EXCEPT... Who is missing from these pictures?
encals-congress.com/encals2026/c...
#patientsincluded #nothingaboutuswithoutus
encals-congress.com/encals2026/c...
#patientsincluded #nothingaboutuswithoutus
ENCALS Meeting 2026
encals-congress.com
July 9, 2026 at 8:39 AM
Would have been an excellent conference EXCEPT... Who is missing from these pictures?
encals-congress.com/encals2026/c...
#patientsincluded #nothingaboutuswithoutus
encals-congress.com/encals2026/c...
#patientsincluded #nothingaboutuswithoutus
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.
Here's a palate cleanser, of Lake Washington in #seattle.
November 16, 2024 at 11:15 PM
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.
Here's a palate cleanser, of Lake Washington in #seattle.
This is such an important point for our community and I hope many other conditions can follow the lead of ALS with #patientsincluded
November 30, 2024 at 11:38 AM
This is such an important point for our community and I hope many other conditions can follow the lead of ALS with #patientsincluded
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.
lets go to T3: What Can We Do Collectively? #Healthxph
August 16, 2025 at 1:58 PM
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.
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/...
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/...
a man in a cape stands in front of a batman symbol
Alt: a man in a cape stands in front of a batman symbol
media.tenor.com
November 13, 2024 at 4:09 PM
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/...
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/...
📢 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
#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
October 2, 2025 at 10:11 AM
📢 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
#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
📢 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
August 21, 2025 at 10:37 AM
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
📢 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
Reviving a thought shared elsewhere
Oncology = knowledge of tumors. Patients are experiential oncologists. Caregivers are supportive care oncologists.
What if we started an inclusive society of digital oncology dedicated to improving knowledge & cancer care? #patientsincluded
Oncology = knowledge of tumors. Patients are experiential oncologists. Caregivers are supportive care oncologists.
What if we started an inclusive society of digital oncology dedicated to improving knowledge & cancer care? #patientsincluded
May 18, 2023 at 11:14 AM
Reviving a thought shared elsewhere
Oncology = knowledge of tumors. Patients are experiential oncologists. Caregivers are supportive care oncologists.
What if we started an inclusive society of digital oncology dedicated to improving knowledge & cancer care? #patientsincluded
Oncology = knowledge of tumors. Patients are experiential oncologists. Caregivers are supportive care oncologists.
What if we started an inclusive society of digital oncology dedicated to improving knowledge & cancer care? #patientsincluded
“ …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
#oncosky
#patientsincluded
Two Patients Faced Chemo. The One Who Survived Demanded a Test To See if It Was Safe. - KFF Health News
Worried that President Donald Trump’s FDA might not act, a panel of cancer experts recommended that doctors consider testing before dosing patients with a commonly used but sometimes deadly cancer dru...
kffhealthnews.org
June 4, 2025 at 3:27 PM
“ …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
#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...
It's what led to this moment for Jackie Ratz: 💕
myheartsisters.org/2025/05/04/a...
May 5, 2025 at 1:42 PM
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...
It's what led to this moment for Jackie Ratz: 💕
myheartsisters.org/2025/05/04/a...
🔬🧒🏥 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...
#patientsfirst #patientsincluded #funlab
www.clinicalleader.com/doc/what-dea...
November 19, 2024 at 2:52 PM
🔬🧒🏥 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...
#patientsfirst #patientsincluded #funlab
www.clinicalleader.com/doc/what-dea...
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
November 24, 2024 at 6:19 AM
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
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!
November 26, 2024 at 7:07 PM
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!
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...
🤝 “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...
2024 Version of the Declaration of Helsinki has Landed!
Why should we care? The Declaration of Helsinki is THE ethical foundation for non-interventional studies..
www.linkedin.com
November 14, 2024 at 1:48 PM
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...
🤝 “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...
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
"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
A crown, a crowd and a standing ovation
“Out of the 700+ scientific papers presented at my first national cardiology conference, only four focused specifically on women’s heart disease. FOUR!? Out of HUNDREDS!?” As you …
myheartsisters.org
May 5, 2025 at 2:22 AM
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
"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
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.
November 11, 2024 at 5:56 PM
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.
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…
November 11, 2024 at 7:04 AM
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…