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Jillian C. Banfield

@jillianengages.bsky.social
336 followers 247 following 98 posts

Patient partnership in research. Team Lead, #PatientPartnership for Institute of Genetics, Canada. #RareDisease. Disabled. Opinions mine & not that of my employer. She/her

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Reposted by Jillian C. Banfield
BCCHR ResDev (DM) @resdevbcch.bsky.social · 10/07/2026
***new*** #CIHR Project Grants Fall 2026 news from A Mota 8 July post @bcchresearch.bsky.social see cihr-irsc.gc.ca/e/54778.html
cihr-irsc.gc.ca
Update on the Fall 2026 Project Grant competition: Message from the Vice-President, Research Programs - CIHR
With the Fall 2026 Project Grant competition now underway, I would like to share several updates about some targeted changes we’re making for this competition. These changes aim to strengthen peer review by ensuring peer review committee mandates are clear and growing the pool of quality reviewers.
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Jillian C. Banfield @jillianengages.bsky.social · 25/05/2026
I discovered that the Tapestry Tool, which has great modules on equity, diversity, and inclusion in patient partnership, has an updated link. I love these modules and recommend them whenever I get the chance. I'm excited to see that there's new content coming, too!
healthresearchbc.ca
Equity, Diversity and Inclusion with Tapestry | Michael Smith Health Research BC
The Citizen Science project allows the public to participate in health research.
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Jillian C. Banfield @jillianengages.bsky.social · 16/03/2026
On April 15, I'm giving a talk for the Centre for Genomics Enhanced Medicine titled "How patient partnership is transforming genetics research". Looking forward to sharing what we do at the Institute of Genetics!
eventbrite.com
VIRTUAL ONLY - CGEM Seminar April 15th - Dr. Jillian Banfield
Join us for a CGEM Seminar on April 15th featuring Dr. Jillian Banfield - don't miss out!
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Reposted by Jillian C. Banfield
Iva Cheung @ivacheung.com · 24/02/2026
McGill researchers are seeking people 18+ who've received care from a rheumatologist in Canada for rheumatoid arthritis to complete a 15-minute survey. mcgillecp.ca1.qualtrics.com/jfe/form/SV_... #ParticipateInResearch
Do you have rheumatoid arthritis? Share your experiences and preferences about virtual and in-person appointments with your rheumatologist!
Online survey takes about 15 minutes!
Eligibility:
•18 years and older
•Receive care from a rheumatologist
Access survey here: [QR code]
PI: Vivane Ta, Doctoral Candidate, McGill University
Supervisor: Dr. Susan Bartlett PhD
For more iinformation: viviane.ta@mail.mcgill.ca
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Reposted by Jillian C. Banfield
Carl Zimmer @carlzimmer.com · 05/01/2026
Here's my latest contribution to the @nytimes "Lost Science" series. Brenna Henn's sweeping study of African genetics has been frozen. Gift link: nyti.ms/3Ypmm1A
Portrait of Brenna Henn next to an open freezer of samples.
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Reposted by Jillian C. Banfield
Iva Cheung @ivacheung.com · 17/12/2025
An international team of patient partners, including @dawnrichards.bsky.social, is studying patient partners' experiences with authorship of peer-reviewed publications. If you have such experience, consider completing this survey! survey.alchemer.eu/s3/90907829/... #ParticipateInResearch
survey.alchemer.eu
Patient and Caregiver Authorship Survey
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Reposted by Jillian C. Banfield
Iva Cheung @ivacheung.com · 03/12/2025
CAMH is recruiting researchers and people who've previously been a patient partner in research for a study of the impact of patient engagement: www.camh.ca/en/science-a... #ParticipateInResearch
camh.ca
Measuring the impacts of lived experience and family engagement on research
We are testing a new tool that measures the impact of engaging people with lived and living experience and caregivers in research.
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Reposted by Jillian C. Banfield
International Patient and Public Involvement Network @ippin.bsky.social · 27/10/2025
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...
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Reposted by Jillian C. Banfield
Solutions for Kids in Pain @kidsinpain.bsky.social · 21/10/2025
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
Light blue background with orange bar across the bottom containing SKIP's logo and the text "Apply by November 4th". On the right, an image of a cartoon tree and to the left, text that reads "SKIP is Growing! Apply to join the SKIP team as a Director of Strategy and Operations at our Halifax Admin centre!"
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Reposted by Jillian C. Banfield
Angelo Iulianella @aineurolab.bsky.social · 24/09/2025
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.
bbc.com
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.
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Jillian C. Banfield @jillianengages.bsky.social · 24/09/2025
Our course is live! Join us for some great discussions with a global group of learners. #FLPatientPower
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Reposted by Jillian C. Banfield
PxP (For Patients, By Patients) @pxphub.bsky.social · 29/08/2025
🤩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
Grid of 41 PxP 2025 speakers
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Jillian C. Banfield @jillianengages.bsky.social · 13/06/2025
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.
Six people sitting at a long table at the front of a room in a public library. They are listening to someone standing at the front of the room who is speaking to them and holding a microphone.
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Reposted by Jillian C. Banfield
Dawn Richards, PhD @dawnrichards.bsky.social · 10/06/2025
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
pxphub.org
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 […]
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Jillian C. Banfield @jillianengages.bsky.social · 16/05/2025
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 👇
sites.google.com
Home
Learn about best practices for patient partnership in health research with a focus on genetics.
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Reposted by Jillian C. Banfield
Dawn Richards, PhD @dawnrichards.bsky.social · 12/05/2025
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 👇
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Reposted by Jillian C. Banfield
Dawn Richards, PhD @dawnrichards.bsky.social · 05/05/2025
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.io
OSF
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Jillian C. Banfield @jillianengages.bsky.social · 30/04/2025
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.
researchnet-recherchenet.ca
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...
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Jillian C. Banfield @jillianengages.bsky.social · 29/04/2025
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.
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Reposted by Jillian C. Banfield
Gen Wojcik @genandgenes.bsky.social · 24/04/2025
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.
nature.com
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.
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Family Engagement in Research Training Program @ferprogram.bsky.social · 22/04/2025
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
Getting Ready to Partner in Policy 101
A spring series to ensure lived experience or patient partners to get ready to share their experiences alongside researchers or organizations.
Who Can Attend?:
* People with lived experience or patient and/or family partners
* Researchers, Organization Members
When Is It?:
* May 12, 7pm EST: Readiness for Partners
* May  19, 7pm EST: Readiness for Professionals
Registration Links Here:  https://lu.ma/ffx93wet
https://lu.ma/ur9p3gqd
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CAPA @capa-aca.bsky.social · 10/04/2025
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
A white background with pruple and black text. McMaster students are working with CAPA and asking people 18+ who live with arthritis and use creative life hacks to help them function to attend an 1 hour orientation meeting and a focus group for 2 hours. Participants will receive a $50 gift card.
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Reposted by Jillian C. Banfield
Vicky Forster @vickyyyf.bsky.social · 09/04/2025
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....
eventbrite.ca
Redefining Patient Engagement: Shaping Research Together Symposium.
Together, patients, researchers and organizational leaders will explore strategies, address barriers & strengthen partnerships in research.
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Reposted by Jillian C. Banfield
Solutions for Kids in Pain @kidsinpain.bsky.social · 03/04/2025
🚀 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
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Reposted by Jillian C. Banfield
Solutions for Kids in Pain @kidsinpain.bsky.social · 02/04/2025
📣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
Promotional graphic for the hybrid open lecture by Dr. Melanie Barwick
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Dawn Richards, PhD @dawnrichards.bsky.social · 31/03/2025
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
pxphub.org
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 […]
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Reposted by Jillian C. Banfield
Krystal Tsosie @kstsosie.bsky.social · 28/03/2025
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...
ictnews.org
‘DataBack’: The fight for genomic data sovereignty
Arizona scientist wants more transparency and equity from researchers in the handling of Indigenous DNA
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Reposted by Jillian C. Banfield
Dr. Lucky Tran @luckytran.com · 27/03/2025
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.
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Vicky Forster @vickyyyf.bsky.social · 27/03/2025
www.theguardian.com/commentisfre...
theguardian.com
As a geneticist, I will not mourn 23andMe and its jumble of useless health information | Adam Rutherford
Millions paid to give away their most personal data. At least in return they found out more about their earwax, says academic and author Adam Rutherford
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Jillian C. Banfield @jillianengages.bsky.social · 21/03/2025
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
naphro.ca
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-...
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Reposted by Jillian C. Banfield
Louca-Mai Brady @louca-mai.bsky.social · 11/03/2025
Following on from our very popular December webinar on 'the invisible labour of #PublicInvolvement' registrations are now open for the second webinar in the series, on Emotions in #PPI, led by colleagues from @penarc.bsky.social. Come join us! @arceastofengland.bsky.social @elspethma.bsky.social
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Jehannine (J9) Austin @j9austin.bsky.social · 28/02/2025
Today is #RareDiseaseDay ! To mark it, we have a curated special collection of papers that are available free to read in the Journal of Genetic Counseling! Please read share and enjoy 😊 🧪 onlinelibrary.wiley.com/doi/toc/10.1...
onlinelibrary.wiley.com
Rare Disease Day Virtual Special Issue: Journal of Genetic Counseling
Click on the title to browse this issue
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Dawn Richards, PhD @dawnrichards.bsky.social · 27/02/2025
An opinion from @amyprice.bsky.social and me in @bmj.com on compensation of patient partners on research teams - pushing institutions to see how fair and transparent policies are part of their commitment to equity - www.bmj.com/content/388/.... #PatientEngagement #PPI #ConsumerInvolvement
bmj.com
Patient partner research has a compensation crisis
Institutions must value patient partners in research with fair and transparent compensation policies, or their commitments to equity will be hollow, write Amy Price and Dawn P Richards A conflict ar...
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Reposted by Jillian C. Banfield
Wobbologist @wobbologist.bsky.social · 25/02/2025
STEM folks, this will greatly impact trans peoples ability to work in academia. It will cut off #trans researchers from conferences, field work, international Phd or post doc opportunities, and so much more! This will be bad for ALL trans people regardless of job type. #TransInSTEM #STEM
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Sylvia Perry @sylviapperry.bsky.social · 24/02/2025
I wrote a piece for @sciam.bsky.social about why White parents should be talking to their kids about race and racism. It was so great to work with @megha.bsky.social on this piece! Please share! www.scientificamerican.com/article/why-...
scientificamerican.com
Why It’s Important to Talk about Race with Children
Children start learning about race and racism as early as preschool. Talking about race early, however difficult, will help them become more antiracist
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Iva Cheung @ivacheung.com · 24/02/2025
I'm helping an early-career researcher with strategic research planning, and I'm wondering if folks have any helpful resources? A lot of my search results are meant for whole-ass institutions and not individual researchers.
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Dawn Richards, PhD @dawnrichards.bsky.social · 23/02/2025
Qs for patient partners or patients generally: is there any info or guidance that would be useful for you about reading scientific papers (in general, not a specific paper)? Any feedback is appreciated! #PPI #PatientEngagement #ConsumerInvolvement
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Lawrence (Larry) Mróz @drmroz.bsky.social · 17/02/2025
Patient partner engagement in the publication process: challenges and possible solutions | BMC Medical Research Methodology | Full Text #patientengagement bmcmedresmethodol.biomedcentral.com/articles/10....
bmcmedresmethodol.biomedcentral.com
Patient partner engagement in the publication process: challenges and possible solutions - BMC Medical Research Methodology
Patient engagement in research is gaining traction as an international standard, and often requirement, of many health research funding agencies. Drivers of this increase include patient interest, inc...
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Jillian C. Banfield @jillianengages.bsky.social · 06/02/2025
Very cringe to watch a recording of myself 🙈, but I enjoyed the opportunity to speak at the Canadian Science Policy Centre pre-conference about how we embed patient partnership in our work at the Institute of Genetics. #PatientEngagement
sciencepolicy.ca
ST1-05: Creating a Health Research System that Promotes Patient Partnership - CSPC
Abstract: People deserve to have input on the decisions that affect them. Patient partnership is a way that patients can actively contribute to health care research. The Institute of Genetics (one of ...
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Reposted by Jillian C. Banfield
Vicky Forster @vickyyyf.bsky.social · 06/02/2025
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!
Please see LinkedIn post for extensive text description of event. https://www.linkedin.com/posts/victoriaforster_patientengagement-patientsincluded-activity-7293321705781870592-rVWa?utm_source=share&utm_medium=member_desktop
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Isabel Jordan (she/her) @seastarbatita.bsky.social · 05/02/2025
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...
modelingchange.blogspot.com
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, ...
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Kelly @broadwaybabyto.bsky.social · 06/02/2025
Make your resistance efforts accessible. Wear a mask. Clean the air for indoor events. Encourage people to stay home if they’re sick. Disabled people want to be involved and can bring a ton to the table if you include us. We live in constant fight or flight. We are uniquely built for resistance.
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PxP (For Patients, By Patients) @pxphub.bsky.social · 04/02/2025
⭐Webinar reminder! Join us tomorrow, February 5th. Find out how our panelists have navigated working as part of a research team, including what supports and facilitators they have asked for or created for themselves. #PatientEngagement #PatientPartners #PPI #PxP25
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Jillian C. Banfield @jillianengages.bsky.social · 30/01/2025
Nice piece highlighting the importance of patient partnership in research, featuring @seastarbatita.bsky.social and @drcchambers.bsky.social! www.dal.ca/news/2025/01...
dal.ca
DalSolutions: One in five kids endure chronic pain. A new pain standard will soothe it.
Dalhousie’s Dr. Christine Chambers and her colleagues at Solutions for Kids in Pain (SKIP) are working with hospitals to adopt Canada’s first Pediatric Pain Management Standard.
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Reposted by Jillian C. Banfield
Jo Wolfe, PhD @jopabinia.bsky.social · 29/01/2025
This isn't mine at all, but the Magic School Bus TV cartoon, which inspired untold millennials including myself, originated as an NSF grant 🧪 www.nsf.gov/awardsearch/...
nsf.gov
NSF Award Search: Award # 9153967 - THE MAGIC SCHOOL BUS: A CHILDREN'S TELEVISION SCIENCE SERIES Lock
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