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...

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

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

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

🤩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

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.

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 👇

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 👇

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...

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.

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 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

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

📣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

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

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...

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.

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

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

New paper alert! 🚨 Up to 39% of Canadians have unmet need for genetic counselling and that its associated with some sociodemographic characteristics. Much of this unmet need is for multifactorial conditions and wouldn’t be met through the current system. www.nature.com/articles/s41...

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...

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

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

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-...

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.

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

Patient partner engagement in the publication process: challenges and possible solutions | BMC Medical Research Methodology | Full Text #patientengagement bmcmedresmethodol.biomedcentral.com/articles/10....

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

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!

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...

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.

⭐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

Nice piece highlighting the importance of patient partnership in research, featuring @seastarbatita.bsky.social and @drcchambers.bsky.social! www.dal.ca/news/2025/01...

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/...

Just co-facilitated a webinar about integrating patients in peer review of grant funding. Fun to nerd out on this 🤓 There's a lot of room to improve and I'm excited that the Institute of Genetics is digging in and trying to make change!

Kate Nelson rocks! atmos.earth/inside-the-f...

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...

The Trump admin has cancelled the panels that approve NIH grants, & is also banning scientists from communicating with the public, attending conferences, and hiring. NIH is the largest funder of biomedical research in the world. This will severely halt the development of many lifesaving treatments.

NIH appears to have canceled/postponed all of its study sections—the independent review panels that approve federal grants for health research. Such grants fund the work/salaries of 300k people at more than 2,500 institutions