Watch the Solve - Bateman Horne Center webinar “Severe #MECFS Research: Removing Barriers to Access” w/ @sabrinapoirier.bsky.social of @icancmeresearch.bsky.social & Dr. David Putrino (Dept. of Rehabilitation & Human Performance @ Icahn School of Medicine at Mount Sinai). youtu.be/65apr_RsdFM
Severe ME/CFS Research: Removing Barriers to Access
YouTube video by SolveME
youtu.be
February 25, 2025 at 7:15 AM
I have also started one for #PatientPartnership in #research in Canada.
It is still quite small still but will grow as our colleagues join us on this app.
Anyone can follow us to learn more about patient partnership - how it works and where to find #resources.
go.bsky.app/BPJWoAc
It is still quite small still but will grow as our colleagues join us on this app.
Anyone can follow us to learn more about patient partnership - how it works and where to find #resources.
go.bsky.app/BPJWoAc
November 12, 2024 at 4:27 AM
I have also started one for #PatientPartnership in #research in Canada.
It is still quite small still but will grow as our colleagues join us on this app.
Anyone can follow us to learn more about patient partnership - how it works and where to find #resources.
go.bsky.app/BPJWoAc
It is still quite small still but will grow as our colleagues join us on this app.
Anyone can follow us to learn more about patient partnership - how it works and where to find #resources.
go.bsky.app/BPJWoAc
🌟 SKIP has embedded patient partnership at every level - and we’re proud to share how in our latest publication.
📖 Read more: rdcu.be/egRQZ
#ItDoesntHaveToHurt #PatientPartnership
@seastarbatita.bsky.social @dawnrichards.bsky.social @drcchambers.bsky.social @egruenwoldt.bsky.social
📖 Read more: rdcu.be/egRQZ
#ItDoesntHaveToHurt #PatientPartnership
@seastarbatita.bsky.social @dawnrichards.bsky.social @drcchambers.bsky.social @egruenwoldt.bsky.social
April 15, 2025 at 5:55 PM
🌟 SKIP has embedded patient partnership at every level - and we’re proud to share how in our latest publication.
📖 Read more: rdcu.be/egRQZ
#ItDoesntHaveToHurt #PatientPartnership
@seastarbatita.bsky.social @dawnrichards.bsky.social @drcchambers.bsky.social @egruenwoldt.bsky.social
📖 Read more: rdcu.be/egRQZ
#ItDoesntHaveToHurt #PatientPartnership
@seastarbatita.bsky.social @dawnrichards.bsky.social @drcchambers.bsky.social @egruenwoldt.bsky.social
A lovely obituary in the @bmj.com for @tessajlrichards.bsky.social. Always one of my favourite editors, and an advocate to the last for good communication with and involvement of patients in their own care.
#MedSky
#Communication
#PatientPartnership
www.bmj.com/content/392/...
#MedSky
#Communication
#PatientPartnership
www.bmj.com/content/392/...
March 28, 2026 at 7:36 PM
A lovely obituary in the @bmj.com for @tessajlrichards.bsky.social. Always one of my favourite editors, and an advocate to the last for good communication with and involvement of patients in their own care.
#MedSky
#Communication
#PatientPartnership
www.bmj.com/content/392/...
#MedSky
#Communication
#PatientPartnership
www.bmj.com/content/392/...
This will be a really interesting presentation - I especially love that includes #PatientPartnership.
Join us on March 17 at 12pm ET for our Seminar Series! We'll be joined by Dr. Ambreen Sayani and Alies Maybee for a session on: Report, Reflect, Resolve: Shaping Inclusive Spaces for Patient and Caregiver Voices in Healthcare Decision Making. Register now! www.eventbrite.com/e/network-fo...
March 10, 2025 at 8:42 PM
This will be a really interesting presentation - I especially love that includes #PatientPartnership.
My thing: #patientadvocacy #patientpartnership #PPI #PPIR (patient&public involvement in #research) #coproduction #patientempowerment #letpatientshelp! 🧩
Started 15yrs ago on Twitter, when #patients got together to build #patientcommunities, mentor one another, find their peers & become #empowered.
Started 15yrs ago on Twitter, when #patients got together to build #patientcommunities, mentor one another, find their peers & become #empowered.
November 21, 2024 at 9:15 AM
My thing: #patientadvocacy #patientpartnership #PPI #PPIR (patient&public involvement in #research) #coproduction #patientempowerment #letpatientshelp! 🧩
Started 15yrs ago on Twitter, when #patients got together to build #patientcommunities, mentor one another, find their peers & become #empowered.
Started 15yrs ago on Twitter, when #patients got together to build #patientcommunities, mentor one another, find their peers & become #empowered.
Words matter and language changes! At the Institute of Genetics, we are updating our language to #PatientPartnership from #PatientEngagement. Our website just got a refresh to reflect the change: https://cihr-irsc.gc.ca/e/53242.html
August 18, 2023 at 2:58 PM
Words matter and language changes! At the Institute of Genetics, we are updating our language to #PatientPartnership from #PatientEngagement. Our website just got a refresh to reflect the change: https://cihr-irsc.gc.ca/e/53242.html
Here's my thing: #patientadvocacy #patientpartnership #PPIR (patient and public involvement in #research).
I started years ago on Twitter, when #patients got together to build communities, learn from one another, find their people & become #empowered.
Also, I'm a #BostonTerrier mom and #foodie 😊
I started years ago on Twitter, when #patients got together to build communities, learn from one another, find their people & become #empowered.
Also, I'm a #BostonTerrier mom and #foodie 😊
November 17, 2024 at 10:08 AM
Here's my thing: #patientadvocacy #patientpartnership #PPIR (patient and public involvement in #research).
I started years ago on Twitter, when #patients got together to build communities, learn from one another, find their people & become #empowered.
Also, I'm a #BostonTerrier mom and #foodie 😊
I started years ago on Twitter, when #patients got together to build communities, learn from one another, find their people & become #empowered.
Also, I'm a #BostonTerrier mom and #foodie 😊
PxP Steering Committee Member Maalvika Bhuvansunder shares a video on why PxP 2025 is meaningful to her and why you should join as well.
Learn more about PxP 2025 here: pxphub.org/event/
#PxP25 #PatientEngagement #ForPatientsByPatients #PPI #PatientPartnership #HealthResearch
Learn more about PxP 2025 here: pxphub.org/event/
#PxP25 #PatientEngagement #ForPatientsByPatients #PPI #PatientPartnership #HealthResearch
August 13, 2025 at 9:47 PM
PxP Steering Committee Member Maalvika Bhuvansunder shares a video on why PxP 2025 is meaningful to her and why you should join as well.
Learn more about PxP 2025 here: pxphub.org/event/
#PxP25 #PatientEngagement #ForPatientsByPatients #PPI #PatientPartnership #HealthResearch
Learn more about PxP 2025 here: pxphub.org/event/
#PxP25 #PatientEngagement #ForPatientsByPatients #PPI #PatientPartnership #HealthResearch
ICYMI, I recently posted about the controversy around language in patient partnership. I'm very much in the camp of using the terminology #PatientPartner
over other options & I'm curious how others feel. #PatientPartnership #PatientEngagement
modelingchange.blogspot.com/2025/01/what...
over other options & I'm curious how others feel. #PatientPartnership #PatientEngagement
modelingchange.blogspot.com/2025/01/what...
What's in a name?
"What's in a name? That which we call a rose by any other name would smell as sweet" William Shakespeare Romeo and Juliet, Act II, ...
modelingchange.blogspot.com
February 5, 2025 at 9:08 PM
ICYMI, I recently posted about the controversy around language in patient partnership. I'm very much in the camp of using the terminology #PatientPartner
over other options & I'm curious how others feel. #PatientPartnership #PatientEngagement
modelingchange.blogspot.com/2025/01/what...
over other options & I'm curious how others feel. #PatientPartnership #PatientEngagement
modelingchange.blogspot.com/2025/01/what...
- How I became an advocate?
- How do I advocate?
- What is exciting about advocacy?
- What are the downsides of advocacy?
- What tips can I share with other fellow advocates?
www.youtube.com/watch?v=5v83...
#Advocacy #Change #CIHR #PublicInterestGroupOnCancer #PatientPartnership #PublicOutreach
- How do I advocate?
- What is exciting about advocacy?
- What are the downsides of advocacy?
- What tips can I share with other fellow advocates?
www.youtube.com/watch?v=5v83...
#Advocacy #Change #CIHR #PublicInterestGroupOnCancer #PatientPartnership #PublicOutreach
How I became an advocate!
YouTube video by svt svs
www.youtube.com
July 20, 2026 at 12:27 PM
- How I became an advocate?
- How do I advocate?
- What is exciting about advocacy?
- What are the downsides of advocacy?
- What tips can I share with other fellow advocates?
www.youtube.com/watch?v=5v83...
#Advocacy #Change #CIHR #PublicInterestGroupOnCancer #PatientPartnership #PublicOutreach
- How do I advocate?
- What is exciting about advocacy?
- What are the downsides of advocacy?
- What tips can I share with other fellow advocates?
www.youtube.com/watch?v=5v83...
#Advocacy #Change #CIHR #PublicInterestGroupOnCancer #PatientPartnership #PublicOutreach
Was honoured to work with @dawnrichards.bsky.social , Zal
Press, and K. Strain on this important paper on #PatientCompensation
pxjournal.org/journal/vol5...
#PatientPartnership
Press, and K. Strain on this important paper on #PatientCompensation
pxjournal.org/journal/vol5...
#PatientPartnership
Patient partner compensation in research and health care: the patient perspective on why and how
As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to...
pxjournal.org
November 23, 2024 at 7:10 PM
Was honoured to work with @dawnrichards.bsky.social , Zal
Press, and K. Strain on this important paper on #PatientCompensation
pxjournal.org/journal/vol5...
#PatientPartnership
Press, and K. Strain on this important paper on #PatientCompensation
pxjournal.org/journal/vol5...
#PatientPartnership
Congratulations SKIP on an amazing job. Love moving conversation from #PatientEngagement to #PatientPartnership. Thanks for sharing your experiences and resources.
🌟 SKIP has embedded patient partnership at every level - and we’re proud to share how in our latest publication.
📖 Read more: rdcu.be/egRQZ
#ItDoesntHaveToHurt #PatientPartnership
@seastarbatita.bsky.social @dawnrichards.bsky.social @drcchambers.bsky.social @egruenwoldt.bsky.social
📖 Read more: rdcu.be/egRQZ
#ItDoesntHaveToHurt #PatientPartnership
@seastarbatita.bsky.social @dawnrichards.bsky.social @drcchambers.bsky.social @egruenwoldt.bsky.social
April 17, 2025 at 8:27 PM
Congratulations SKIP on an amazing job. Love moving conversation from #PatientEngagement to #PatientPartnership. Thanks for sharing your experiences and resources.
It's been *waaay* to long in coming, but I've been wanting to write this piece on #PatientPartnership language for well over a year (2 years maybe?). In it I describe why I use the language I do.
#PatientEngagement #PatientOrientedResearch
modelingchange.blogspot.com/2025/01/what...
#PatientEngagement #PatientOrientedResearch
modelingchange.blogspot.com/2025/01/what...
What's in a name?
"What's in a name? That which we call a rose by any other name would smell as sweet" William Shakespeare Romeo and Juliet, Act II, ...
modelingchange.blogspot.com
January 23, 2025 at 7:44 PM
It's been *waaay* to long in coming, but I've been wanting to write this piece on #PatientPartnership language for well over a year (2 years maybe?). In it I describe why I use the language I do.
#PatientEngagement #PatientOrientedResearch
modelingchange.blogspot.com/2025/01/what...
#PatientEngagement #PatientOrientedResearch
modelingchange.blogspot.com/2025/01/what...
Was a pleasure to have this ‘big ideas’ conversation on #PatientPartnership with Dr Christine Chambers. Many thanks to @brynphd.bsky.social & @amchudyk.bsky.social for facilitating this opportunity:)
It’s only Episode 7 of As PER Usual, featuring the dynamic duo of @seastarbatita.bsky.social and Christine Chambers in convo with @amchudyk.bsky.social and I about creating enviros to support #PatientEngagement
Available now wherever fine podcast purveyors are found.
youtu.be/FzsIxaZYaCY?...
Available now wherever fine podcast purveyors are found.
youtu.be/FzsIxaZYaCY?...
The Work Has to be Relational: Fostering Engagement-Supportive Academic Environments
In our study, we heard from participants that traditional academic culture is not designed to support patient engagement, let alone effective patient engagem...
youtu.be
October 2, 2023 at 3:02 PM
Was a pleasure to have this ‘big ideas’ conversation on #PatientPartnership with Dr Christine Chambers. Many thanks to @brynphd.bsky.social & @amchudyk.bsky.social for facilitating this opportunity:)
Very excited about this. Many thanks to @jillianengages.bsky.social for showing leadership in this area #PatientPartnership
Words matter and language changes! At the Institute of Genetics, we are updating our language to #PatientPartnership from #PatientEngagement. Our website just got a refresh to reflect the change: https://cihr-irsc.gc.ca/e/53242.html
August 24, 2023 at 5:51 AM
Very excited about this. Many thanks to @jillianengages.bsky.social for showing leadership in this area #PatientPartnership
Thrilled to join fellow patient partners in this upcoming #webinar on growing your influence in patient engagement!
📆 May 12, 2026
⏰ 12 PM PDT
Let’s keep pushing the boundaries of #PatientPartnership
The work is far from finished
Sign up lnkd.in/eiRyWdFR
#PatientVoice #PXP @pxphub.bsky.social
📆 May 12, 2026
⏰ 12 PM PDT
Let’s keep pushing the boundaries of #PatientPartnership
The work is far from finished
Sign up lnkd.in/eiRyWdFR
#PatientVoice #PXP @pxphub.bsky.social
May 11, 2025 at 12:10 AM
Thrilled to join fellow patient partners in this upcoming #webinar on growing your influence in patient engagement!
📆 May 12, 2026
⏰ 12 PM PDT
Let’s keep pushing the boundaries of #PatientPartnership
The work is far from finished
Sign up lnkd.in/eiRyWdFR
#PatientVoice #PXP @pxphub.bsky.social
📆 May 12, 2026
⏰ 12 PM PDT
Let’s keep pushing the boundaries of #PatientPartnership
The work is far from finished
Sign up lnkd.in/eiRyWdFR
#PatientVoice #PXP @pxphub.bsky.social
We - the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) - have just published our 2nd scholarly paper!! 💓
#MarathonOfHope #AtlanticCanada #PEI #NovaScotia #NewBrunswick #NewfoundlandAndLabrador #PatientPartnership
@marathonofhope.bsky.social
journals.sagepub.com/doi/10.1177/...
#MarathonOfHope #AtlanticCanada #PEI #NovaScotia #NewBrunswick #NewfoundlandAndLabrador #PatientPartnership
@marathonofhope.bsky.social
journals.sagepub.com/doi/10.1177/...
Patient Advisory Committee Engagement in a Precision Medicine-Focused Public Oncology Conference: Case Report of Lessons Learned - Sevtap Savas, Georgia Skardasi, Aaron A. Curtis, Marcelo F. Martinez,...
Introduction and objectives: Public partnerships, engagement, and outreach are essential for meaningful knowledge dissemination and exchange activities in publi...
journals.sagepub.com
February 19, 2026 at 1:51 PM
We - the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) - have just published our 2nd scholarly paper!! 💓
#MarathonOfHope #AtlanticCanada #PEI #NovaScotia #NewBrunswick #NewfoundlandAndLabrador #PatientPartnership
@marathonofhope.bsky.social
journals.sagepub.com/doi/10.1177/...
#MarathonOfHope #AtlanticCanada #PEI #NovaScotia #NewBrunswick #NewfoundlandAndLabrador #PatientPartnership
@marathonofhope.bsky.social
journals.sagepub.com/doi/10.1177/...
📢 CANTRAIN Launches a New International Initiative with EUPATI and MRCT Center and Joint Task Force for Clinical Trials Competency
Learn more about this new initiative: tinyurl.com/PatientEngag...
#PatientEngagement #PatientPartner #PatientPartnership
Learn more about this new initiative: tinyurl.com/PatientEngag...
#PatientEngagement #PatientPartner #PatientPartnership
March 19, 2025 at 9:13 PM
📢 CANTRAIN Launches a New International Initiative with EUPATI and MRCT Center and Joint Task Force for Clinical Trials Competency
Learn more about this new initiative: tinyurl.com/PatientEngag...
#PatientEngagement #PatientPartner #PatientPartnership
Learn more about this new initiative: tinyurl.com/PatientEngag...
#PatientEngagement #PatientPartner #PatientPartnership
Ready to start the day at the CQuIPS Annual Symposium 2024. Looking forward to presenting as part of a session on broadening our understanding of harm. #patientsafety + #patientengagment + #patientpartnership = #improvement in #safetyandquality
November 19, 2024 at 2:00 PM
Ready to start the day at the CQuIPS Annual Symposium 2024. Looking forward to presenting as part of a session on broadening our understanding of harm. #patientsafety + #patientengagment + #patientpartnership = #improvement in #safetyandquality
Digital health was described as shifting care toward partnership: empowered patients valued communication, questions, and shared use of technology, but stressed that cultural change matters more than technology alone. #DigitalHealth #EmpoweredPatients #PatientPartnership doi.org/10.1136/bmjo...
https://doi.org/10.1136/bmjopen-2018-025267
doi.org
September 19, 2026 at 3:36 PM
Digital health was described as shifting care toward partnership: empowered patients valued communication, questions, and shared use of technology, but stressed that cultural change matters more than technology alone. #DigitalHealth #EmpoweredPatients #PatientPartnership doi.org/10.1136/bmjo...