Free online course 'The Power of Patient Advocacy in Genomics' starting 18 May, hosted on FutureLearn with live, educator-monitored forums. Image shows a diverse group placing hands together in teamwork.

Our free Patient Advocacy in Genomics online course is back! 🖥️

Starting 18 May on FutureLearn with live, educator-monitored forums.
Build impactful advocacy skills, learn from world-class experts, and connect with a global community.

Enrol now 👇 bit.ly/45MR73Y
#PatientVoice #FLPatientPower

Thanks for speaking at the workshop and for writing this!

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!

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!

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

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

Haligonian here, happy to answer any questions! I lived on the south shore, too.
My only immediate thought is that Joggins is quite a distance from Halifax.

Portrait of Brenna Henn next to an open freezer of samples.

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

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

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

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...

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!"

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

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.

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

Wellcome Connecting Science Patient Advocacy: Influencing Research, Clinical Practice and Decision Making - free online course Start learning from 22 September Duration: 4 weeks of live and monitored forums Weekly study expectation: 3 hours In collaboration with FutureLearn

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

Grid of 41 PxP 2025 speakers

🤩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

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.

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.

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 […]

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

Home Learn about best practices for patient partnership in health research with a focus on genetics.

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 👇

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 👇

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).

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...

Oh no! Hope you're able to get lots of rest and feel better soon.

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.

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.

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.

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.

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

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

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.

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

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....

🚀 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

Promotional graphic for the hybrid open lecture by Dr. Melanie Barwick

📣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

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 […]

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