Jillian C. Banfield
@jillianengages.bsky.social
Patient partnership in research. Team Lead, #PatientPartnership for Institute of Genetics, Canada. #RareDisease. Disabled. Opinions mine & not that of my employer.
She/her
She/her
Reposted by Jillian C. Banfield
How do you see AI fitting into the future of PPI storytelling? And what safeguards or opportunities do you think matter most?
Read the latest IPPIN blog post from Patrick Toland - 'Patient Voices in the Age of AI: Opportunity or Visibility Theft?'
intppinetwork.wixsite.com/ippin/post/p...
Read the latest IPPIN blog post from Patrick Toland - 'Patient Voices in the Age of AI: Opportunity or Visibility Theft?'
intppinetwork.wixsite.com/ippin/post/p...
October 27, 2025 at 3:31 PM
How do you see AI fitting into the future of PPI storytelling? And what safeguards or opportunities do you think matter most?
Read the latest IPPIN blog post from Patrick Toland - 'Patient Voices in the Age of AI: Opportunity or Visibility Theft?'
intppinetwork.wixsite.com/ippin/post/p...
Read the latest IPPIN blog post from Patrick Toland - 'Patient Voices in the Age of AI: Opportunity or Visibility Theft?'
intppinetwork.wixsite.com/ippin/post/p...
Reposted by Jillian C. Banfield
SKIP is growing! We're #hiring a Director of Strategy & Operations to help lead strategic growth & advance our mission to improve children's pain management. Join us in the Admin Centre on the Dalhousie Campus in #Halifax - Apply today! tinyurl.com/ykwmeztz #ItDoesntHaveToHurt
October 21, 2025 at 4:39 PM
SKIP is growing! We're #hiring a Director of Strategy & Operations to help lead strategic growth & advance our mission to improve children's pain management. Join us in the Admin Centre on the Dalhousie Campus in #Halifax - Apply today! tinyurl.com/ykwmeztz #ItDoesntHaveToHurt
Reposted by Jillian C. Banfield
A breakthrough in the treatment of a debilitating neurodegenerative disease. Made possible by modified viral delivery of gene therapy. This is where discovery research leads to. Congratulations to the researchers involved, grateful for hope it provides for patients.
Huntington's disease successfully treated for first time
One of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.
www.bbc.com
September 24, 2025 at 12:36 PM
A breakthrough in the treatment of a debilitating neurodegenerative disease. Made possible by modified viral delivery of gene therapy. This is where discovery research leads to. Congratulations to the researchers involved, grateful for hope it provides for patients.
Our course is live! Join us for some great discussions with a global group of learners.
#FLPatientPower
#FLPatientPower
The Power of #PatientAdvocacy in Genomics, starts tomorrow (22 Sept)🖥️
Join our free online course, and gain the expertise and confidence needed to co-develop genetic research🧬
Learn how to engage in effective patient/researcher dialogue🗣️
➡️bit.ly/4lH3hBl
#PatientVoices @jillianhw.bsky.social
Join our free online course, and gain the expertise and confidence needed to co-develop genetic research🧬
Learn how to engage in effective patient/researcher dialogue🗣️
➡️bit.ly/4lH3hBl
#PatientVoices @jillianhw.bsky.social
September 24, 2025 at 12:22 PM
Our course is live! Join us for some great discussions with a global group of learners.
#FLPatientPower
#FLPatientPower
Reposted by Jillian C. Banfield
The Power of Patient Advocacy in Genomics, is a free online course, starting next week (22 Sept) 🖥️
Learn how to harness patient insights to shape disease research, healthcare, and clinical decision making🧬
Learn with experts including, @jillianhw.bsky.social 🎓
➡️bit.ly/4lH3hBl
#PatientVoices
Learn how to harness patient insights to shape disease research, healthcare, and clinical decision making🧬
Learn with experts including, @jillianhw.bsky.social 🎓
➡️bit.ly/4lH3hBl
#PatientVoices
September 16, 2025 at 10:00 AM
The Power of Patient Advocacy in Genomics, is a free online course, starting next week (22 Sept) 🖥️
Learn how to harness patient insights to shape disease research, healthcare, and clinical decision making🧬
Learn with experts including, @jillianhw.bsky.social 🎓
➡️bit.ly/4lH3hBl
#PatientVoices
Learn how to harness patient insights to shape disease research, healthcare, and clinical decision making🧬
Learn with experts including, @jillianhw.bsky.social 🎓
➡️bit.ly/4lH3hBl
#PatientVoices
Reposted by Jillian C. Banfield
🤩We are so grateful to these incredible people who will be speaking during the virtual conference in September (9th-12th). Check out their speaker biographies here: pxphub.org/event/speake...
#PxP25 #PatientEngagement #PPI #ConsumerInvolvement
#PxP25 #PatientEngagement #PPI #ConsumerInvolvement
August 29, 2025 at 3:43 AM
🤩We are so grateful to these incredible people who will be speaking during the virtual conference in September (9th-12th). Check out their speaker biographies here: pxphub.org/event/speake...
#PxP25 #PatientEngagement #PPI #ConsumerInvolvement
#PxP25 #PatientEngagement #PPI #ConsumerInvolvement
Such a pleasure to facilitate a panel discussion among patient partners & academic researchers in Charlottetown! The Institute of Genetics visited PEI for our Institute Advisory Board meeting & took the opportunity to host this event in partnership with the Centre for Health & Community Research.
June 13, 2025 at 3:03 PM
Such a pleasure to facilitate a panel discussion among patient partners & academic researchers in Charlottetown! The Institute of Genetics visited PEI for our Institute Advisory Board meeting & took the opportunity to host this event in partnership with the Centre for Health & Community Research.
Reposted by Jillian C. Banfield
Interested in reading scientific papers but not sure where to start or what the parts of a paper are? We've co-created a resource with #PatientPartners for you! See our blog pxphub.org/how-to-read-... and the resource laid out like a scientific paper pxphub.org/wp-content/u... /1 #PatientEngagement
How to Read a Scientific Paper - PxP
Co-Created by Dawn Richards and Jim Kempster with input from CIHR-IMHA PERA members Graphics created by Tianna Magel Scientific […]
pxphub.org
June 10, 2025 at 12:52 PM
Interested in reading scientific papers but not sure where to start or what the parts of a paper are? We've co-created a resource with #PatientPartners for you! See our blog pxphub.org/how-to-read-... and the resource laid out like a scientific paper pxphub.org/wp-content/u... /1 #PatientEngagement
If you're around Charlottetown on June 10, consider joining us for a workshop on patient partnership in research!
The Institute of Genetics is collaborating with the UPEI Centre for Health and Community Research and local patient partners.
Learn more & register here 👇
The Institute of Genetics is collaborating with the UPEI Centre for Health and Community Research and local patient partners.
Learn more & register here 👇
Home
Learn about best practices for patient partnership in health research with a focus on genetics.
sites.google.com
May 16, 2025 at 3:15 PM
If you're around Charlottetown on June 10, consider joining us for a workshop on patient partnership in research!
The Institute of Genetics is collaborating with the UPEI Centre for Health and Community Research and local patient partners.
Learn more & register here 👇
The Institute of Genetics is collaborating with the UPEI Centre for Health and Community Research and local patient partners.
Learn more & register here 👇
Reposted by Jillian C. Banfield
How about taking a break today and joining us for a @pxphub.bsky.social webinar on growing your influence as a patient partner in #PatientEngagement? Details 👇
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 12, 2025 at 3:10 PM
How about taking a break today and joining us for a @pxphub.bsky.social webinar on growing your influence as a patient partner in #PatientEngagement? Details 👇
Reposted by Jillian C. Banfield
This week is my first time in an instructor role at #UWaterloo, where I've co-designed a course on accessibility as part of the Teaching Innovation Incubator.
Some of my lessons (including IAQ, Covid-19, and masking) are available on YouTube for anyone interested!
youtube.com/playlist?lis...
Some of my lessons (including IAQ, Covid-19, and masking) are available on YouTube for anyone interested!
youtube.com/playlist?lis...
The Wicked Problem of Accessibility - Spring 2025 - YouTube
Pre-class videos for Week 3, 6, and 7 for ARTS 390, ENVS 374, GENE 399, HEALTH 490, MTHEL 398, and SCI 300-001 students (Spring 2025).
youtube.com
May 7, 2025 at 3:01 PM
This week is my first time in an instructor role at #UWaterloo, where I've co-designed a course on accessibility as part of the Teaching Innovation Incubator.
Some of my lessons (including IAQ, Covid-19, and masking) are available on YouTube for anyone interested!
youtube.com/playlist?lis...
Some of my lessons (including IAQ, Covid-19, and masking) are available on YouTube for anyone interested!
youtube.com/playlist?lis...
Reposted by Jillian C. Banfield
Sharing a preprint (submitted to a journal for peer review, but not yet published) co-authored by patient authors about our work in #PatientEngagement or #PPI in a clinical trials organization (Clinical Trials Ontario). Hoping others can learn from our work in this space osf.io/preprints/os...
OSF
osf.io
May 5, 2025 at 1:55 PM
Sharing a preprint (submitted to a journal for peer review, but not yet published) co-authored by patient authors about our work in #PatientEngagement or #PPI in a clinical trials organization (Clinical Trials Ontario). Hoping others can learn from our work in this space osf.io/preprints/os...
I'm excited that the upcoming Institute of Genetics planning & dissemination grant opportunity has supplemental funding from our colleagues at SPOR!
For proposals that include patient partnership, this means you can apply for a lot more funding. Application deadline is June 19.
For proposals that include patient partnership, this means you can apply for a lot more funding. Application deadline is June 19.
ResearchNet - RechercheNet
ResearchNet is an innovative web portal that will provide a virtual meeting place for the research community, providing a single point of contact to share information, collaborate, and conduct busines...
www.researchnet-recherchenet.ca
April 30, 2025 at 4:26 PM
I'm excited that the upcoming Institute of Genetics planning & dissemination grant opportunity has supplemental funding from our colleagues at SPOR!
For proposals that include patient partnership, this means you can apply for a lot more funding. Application deadline is June 19.
For proposals that include patient partnership, this means you can apply for a lot more funding. Application deadline is June 19.
Patient partners in research aren't here to inspire you or remind you why you do what you do.
They're here to contribute their expertise.
They're here to contribute their expertise.
April 29, 2025 at 6:04 PM
Patient partners in research aren't here to inspire you or remind you why you do what you do.
They're here to contribute their expertise.
They're here to contribute their expertise.
Reposted by Jillian C. Banfield
I wrote about how we must stand and fight against the threat of eugenics.
Fueled by white nationalism and scientific racism, these beliefs are factually wrong and ethically abhorrent.
This fight includes supporting efforts to diversify our workforce & science. To stop now would be a deep betrayal.
Fueled by white nationalism and scientific racism, these beliefs are factually wrong and ethically abhorrent.
This fight includes supporting efforts to diversify our workforce & science. To stop now would be a deep betrayal.
Eugenics is on the rise again: human geneticists must take a stand
Scientists must push back against the threat of rising white nationalism and the dangerous and pseudoscientific ideas of eugenics.
www.nature.com
April 24, 2025 at 12:44 PM
I wrote about how we must stand and fight against the threat of eugenics.
Fueled by white nationalism and scientific racism, these beliefs are factually wrong and ethically abhorrent.
This fight includes supporting efforts to diversify our workforce & science. To stop now would be a deep betrayal.
Fueled by white nationalism and scientific racism, these beliefs are factually wrong and ethically abhorrent.
This fight includes supporting efforts to diversify our workforce & science. To stop now would be a deep betrayal.
Reposted by Jillian C. Banfield
Getting Ready to Partner in Policy 101
Join our spring series designed to support lived experience and patient partners in getting ready to share their stories and insights alongside researchers and organizations. /1 #PatientEngagement
Join our spring series designed to support lived experience and patient partners in getting ready to share their stories and insights alongside researchers and organizations. /1 #PatientEngagement
April 22, 2025 at 7:02 PM
Getting Ready to Partner in Policy 101
Join our spring series designed to support lived experience and patient partners in getting ready to share their stories and insights alongside researchers and organizations. /1 #PatientEngagement
Join our spring series designed to support lived experience and patient partners in getting ready to share their stories and insights alongside researchers and organizations. /1 #PatientEngagement
Reposted by Jillian C. Banfield
Do you live with Arthritis? Do you have any creative life hacks, innovative adaptive strategies or devices or personal accommodations that help your daily function? We want to hear from you!
Visit this link arthritispatient.ca/en/capa-news... or use the link in our bio to learn more and participate
Visit this link arthritispatient.ca/en/capa-news... or use the link in our bio to learn more and participate
April 10, 2025 at 10:11 PM
Do you live with Arthritis? Do you have any creative life hacks, innovative adaptive strategies or devices or personal accommodations that help your daily function? We want to hear from you!
Visit this link arthritispatient.ca/en/capa-news... or use the link in our bio to learn more and participate
Visit this link arthritispatient.ca/en/capa-news... or use the link in our bio to learn more and participate
Reposted by Jillian C. Banfield
For anyone in Canada involved in #patientengagement - Women's College Hospital and UHN are co-hosting a joint event to discuss and collaborate on institutional approaches to patient engagement. In-person and virtual attendance possible: www.eventbrite.ca/e/1301797053....
Redefining Patient Engagement: Shaping Research Together Symposium.
Together, patients, researchers and organizational leaders will explore strategies, address barriers & strengthen partnerships in research.
www.eventbrite.ca
April 9, 2025 at 6:17 PM
For anyone in Canada involved in #patientengagement - Women's College Hospital and UHN are co-hosting a joint event to discuss and collaborate on institutional approaches to patient engagement. In-person and virtual attendance possible: www.eventbrite.ca/e/1301797053....
Reposted by Jillian C. Banfield
🚀 Want to make a difference in pediatric pain care? We're hiring a Knowledge Broker to join SKIP's Admin Centre on the Dalhousie Halifax Campus! Apply by April 24th! 👉https://tinyurl.com/tvbwh3w6 #ItDoesntHaveToHurt
April 3, 2025 at 8:01 PM
🚀 Want to make a difference in pediatric pain care? We're hiring a Knowledge Broker to join SKIP's Admin Centre on the Dalhousie Halifax Campus! Apply by April 24th! 👉https://tinyurl.com/tvbwh3w6 #ItDoesntHaveToHurt
Reposted by Jillian C. Banfield
📣One week away! Hybrid open lecture by Dr. @melaniebarwick.bsky.social! 🌟
Join in person on the Dalhousie University Campus – Halifax, NS or virtually (Teams) on April 9, 2025, 3-4 PM ET for "From Lab to Life: Unleashing the Power of Implementation Science"!
Register here: tinyurl.com/77e55ztv
Join in person on the Dalhousie University Campus – Halifax, NS or virtually (Teams) on April 9, 2025, 3-4 PM ET for "From Lab to Life: Unleashing the Power of Implementation Science"!
Register here: tinyurl.com/77e55ztv
April 2, 2025 at 5:01 PM
📣One week away! Hybrid open lecture by Dr. @melaniebarwick.bsky.social! 🌟
Join in person on the Dalhousie University Campus – Halifax, NS or virtually (Teams) on April 9, 2025, 3-4 PM ET for "From Lab to Life: Unleashing the Power of Implementation Science"!
Register here: tinyurl.com/77e55ztv
Join in person on the Dalhousie University Campus – Halifax, NS or virtually (Teams) on April 9, 2025, 3-4 PM ET for "From Lab to Life: Unleashing the Power of Implementation Science"!
Register here: tinyurl.com/77e55ztv
Reposted by Jillian C. Banfield
For research teams that include patient partners in co-writing papers, here are some tips for:
👉patient partners reviewing manuscripts - pxphub.org/patient-part...
👉others on the research team in asking for patient partner input and some guidance - pxphub.org/research-tea...
#PatientEngagement
👉patient partners reviewing manuscripts - pxphub.org/patient-part...
👉others on the research team in asking for patient partner input and some guidance - pxphub.org/research-tea...
#PatientEngagement
Providing input on a research team’s draft manuscript: Why this is important and some guidance - PxP
A Blog and Checklist for Patient Partners/People with lived experience By Anna Samson, Chantale Thurston, Don Wood, Trinity Lowthian, Dawn […]
pxphub.org
March 31, 2025 at 3:22 PM
For research teams that include patient partners in co-writing papers, here are some tips for:
👉patient partners reviewing manuscripts - pxphub.org/patient-part...
👉others on the research team in asking for patient partner input and some guidance - pxphub.org/research-tea...
#PatientEngagement
👉patient partners reviewing manuscripts - pxphub.org/patient-part...
👉others on the research team in asking for patient partner input and some guidance - pxphub.org/research-tea...
#PatientEngagement
Reposted by Jillian C. Banfield
By age 24, I patented a cancer device, interned at top medical centers, was accepted to a university known for Nobel Laureates.
Yet, being Navajo, I felt the disconnect of being a scientist vs an object of study.
I am not a product of DEI. I persevered despite science ictnews.org/news/databac...
Yet, being Navajo, I felt the disconnect of being a scientist vs an object of study.
I am not a product of DEI. I persevered despite science ictnews.org/news/databac...
‘DataBack’: The fight for genomic data sovereignty
Arizona scientist wants more transparency and equity from researchers in the handling of Indigenous DNA
ictnews.org
March 28, 2025 at 2:55 PM
By age 24, I patented a cancer device, interned at top medical centers, was accepted to a university known for Nobel Laureates.
Yet, being Navajo, I felt the disconnect of being a scientist vs an object of study.
I am not a product of DEI. I persevered despite science ictnews.org/news/databac...
Yet, being Navajo, I felt the disconnect of being a scientist vs an object of study.
I am not a product of DEI. I persevered despite science ictnews.org/news/databac...
Reposted by Jillian C. Banfield
Update on Long COVID research funding: Per researcher and advocate @themegascope.bsky.social, funding for at least 45 different RECOVER studies have been terminated.
RECOVER is a $1.7 billion program that serves as the single largest federal funding mechanism for long COVID research.
RECOVER is a $1.7 billion program that serves as the single largest federal funding mechanism for long COVID research.
March 27, 2025 at 6:36 PM
Update on Long COVID research funding: Per researcher and advocate @themegascope.bsky.social, funding for at least 45 different RECOVER studies have been terminated.
RECOVER is a $1.7 billion program that serves as the single largest federal funding mechanism for long COVID research.
RECOVER is a $1.7 billion program that serves as the single largest federal funding mechanism for long COVID research.
Reposted by Jillian C. Banfield
The final report on the refresh for Canada’s Strategy for Patient-Oriented Research (SPOR) is now available.
Lots of recommended actions, including changing the name to "Strategy for People-Centred and Partnership Oriented Research". #PatientEngagement #PatientPartnership #PPI
Lots of recommended actions, including changing the name to "Strategy for People-Centred and Partnership Oriented Research". #PatientEngagement #PatientPartnership #PPI
SPOR | NAPHRO
Explore the key themes and insights gathered from SPOR communities across Canada as part of the 2023-24 engagement process. This document outlines strengths, challenges, and emerging needs in patient-...
www.naphro.ca
March 21, 2025 at 11:37 AM
The final report on the refresh for Canada’s Strategy for Patient-Oriented Research (SPOR) is now available.
Lots of recommended actions, including changing the name to "Strategy for People-Centred and Partnership Oriented Research". #PatientEngagement #PatientPartnership #PPI
Lots of recommended actions, including changing the name to "Strategy for People-Centred and Partnership Oriented Research". #PatientEngagement #PatientPartnership #PPI