joanne golt retweetledi
Our paper #PEMCY Brazil is out! Great time @dana_anaby @RTeplicky @canchild_ca Participation and environment measure - children and youth: PEM-CY Bra... sciencedirect.com/science/articl…
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joanne golt
216 posts
@BMJPatientEd An ideal time to push for awareness on the world stage of Cerebral Visual Impairment (CVI) the leading cause of childhood blindness and low vision. Looking forward to a Canadian strategic alliance for strong leadership.
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A hugely important step in progressing patient partnership across all healthcare. This is something we have long advocated for and hope this will begin to push forward the call from patients, communities and the public to be included in decision making.
The BMJ@bmj_latest
For the first time in the World Health Organization’s 76 year history, world leaders have unanimously committed to put social participation—people, communities and civil society—at the heart of health decision making processes bmj.com/content/386/bm…
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@EACD2025 @Mac_Autism @McMasterU You're always ahead of the curve, Peter. O/C prediction has only served to undermine feelings of competence in parents. Adaptation. Yes. Been saying it for years.
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Peter Rosenbaum from @Mac_Autism discusses the challenges of predicting #ChildhoodDisability outcomes. He advocates to shift towards adaptation over curing, emphasizing the importance of aids and adaptations for improving functioning. #EACD2025 #IAACD2025 youtu.be/kZE9N09NJes
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@Johnny_Ravo @scotlandcvi I hope they share their learnings among the professional communities to which they belong. This knowledge needs to be spread far and wide.
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Day 3/3 of delivering CVI training
Been really enjoyable talking to QTVI’s and hearing about the children they are supporting with CVI. Great enthusiasm for learning and hopefully our course will have the impact we designed it to have.
Been good!
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@LouiseKinross @HBKidsHospital @canchild_ca When a "Planning meeting" is really an event telling the family of decisions already made. When "do you have any questions?" is found ubiquitously in every conversation and email, yet it's clearly not a lack of understanding on the parents' part.
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'I think clinicians need to understand that they can harm families with a throw-away comment or an [unkind] look. There are harms that come from poor listening.' @HBKidsHospital @canchild_ca hollandbloorview.ca/stories-news-e…
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@MacUPediatrics @cross_acc @CIHR_IRSC @canchild_ca @machealthsci @SMicsinszki @m_batthish @kabeattie Congratulations Andrea!
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Andrea Cross @cross_acc knows youth can reshape research spaces, championing “Nothing about us without us.” Her @CIHR_IRSC grant will support a co-developed Youth Engagement in Research course to empower meaningful partnerships between researchers & youth➡️webapps.cihr-irsc.gc.ca/decisions/p/pr…
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@amaybee Agree! Goodbye management theory. Hello relevant big data.
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@LouiseKinross It's clearly up to parents and families to come up with solutions that are creative and feasible to present to decision-makers.
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Truth! Disability doesn't end at age 18. Or 21. Only the supports do. 👇
The Rundown@therundowntvo
"The government or society think they're cured at 18. That's not what happens. It's a lifelong disorder," @RitaMiceli3, author of "Giaci and Me: A Mother's Journey of Loving and Raising an Autistic Child," tells @spaikin. Tonight at 8/11pm | Producer: Laetitia Dogbe
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@PatientAdvisors @cihr The principle of creating a trusting relationship may be misinterpreted by researchers as having to make friends; like having to befriend colleagues at the office, with whom you really have nothing in common. From a pp perspective, that is not what I expect.
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We are pleased to share the story of research – as told by people who share their lived/living experiences as partners in healthcare/health research. Thanks to @CIHR for supporting this contribution to the #SPOR Refresh Strategy.
bit.ly/3VJYuWa
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@LouiseKinross This is the absolute truth. The fact that it is not heard more openly is shameful. No one should be surprised.
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'For her report, which was released in February, Richards asked parents what the "worst thing" was about parenting their children — at the top of the list was the fight for services and #respite care.' #DisabilityTwitter😟👇cbc.ca/news/canada/ne…
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@Thomsod @LucyLach @MaireadCavanag2 @LivMendelsohn @LouiseKinross @ARCHDisability It's been the same here for years. The old "throw the problem into someone else's court " game.
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EACD 2024 - Mini-Symposia (4/5)
The #EACD2024 Programme is full of high-quality mini-symposia from the experts in the field of childhood-onset disabilities!
Check out the full provisional programme here: eacd2024.org/scientific-pro…
(Regular rate registration deadline: March 15th!)
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@amaybee @BeverleyPomeroy @CIHR_IRSC It's what I've been saying, even to funders. There is certainly enough intellectual capital available by patient partners to staff it!
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@BeverleyPomeroy @CIHR_IRSC Interesting and attractive idea. Are others interested?
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Super disappointed in @CIHR_IRSC I’d say ‘know ur audience’ but looking at the likes and comments it’s obvious we have a long way to go before #patientorientedresearch #patientpartnerships culture shifts. Any one up to opening our own research institute led by pts 4 pts? 🤞
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@ProulxLaurie Advocate and empower- throw away words. They mean everything and nothing. They do little to help build the fabric that effects change.
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@TO_dpr Once you manage to obtain a diagnosis, your suggested treatment may depend on the provider's perception of your health. Our system is getting closer to do-it-yourself integrated care management, and if you don't know who you should have on your care team, look out.
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Working daily with patient & public research partners, posts like this may have unintended harm or consequences. Many people I work with have harrowing stories of navigating a system where doing their own research is a necessity just to get a diagnosis or care. /1
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@MaggieKeresteci @Dr_KerryK Implications of isolation - near absence of intellectual stimulation. Could this lead to earlier onset dementia? Just asking.
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#Cargivers are worn out by isolation, worry & responsibility to care for their loved ones. Add in stresses of the holiday season & you have a recipe for burnout. Caregivers save #HealthSystem billions of $ a year, yet there still isn't govn't policy to formalize supports needed.
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@M__Hildenbrand @scotlandcvi Yes! Thank you. Parents and individuals should be made aware that there is no mandatory training for any medical professional. Knowing this will flip the script. Not a matter of "why is my professional not on the same page as me?" Rather, I have to find the right professional.
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Absolutely disappointing:
“…CVI is currently not part of mandatory training for any medical professional, including ophthalmologists. …“ [But: „The Good News“]
My story:
nlsetc.de/ausserdem.html
CVI Scotland@scotlandcvi
What are the barriers to CVI evaluation diagnosis & care? Team representing cross section of #CVI community shared actual experiences of the barriers from different professional & personal perspectives Structured explanation & suggested roadmap forward👇 peroo.sh/3R
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@nicmcdowellnz @scotlandcvi @VisionLossRehab Awesome! I had no clue due to no Quebec partners. Will work on that!
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Delighted to have been invited by Canada’s national @VisionLossRehab services to provide training on CVI in adults.
Fantastic first half day with an enthusiastic, interesting and engaging group. You make teaching a joy!
#cvi
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@CAPA_Arthritis Congratulations Linda! Wonderful you will be at the table.
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CAPA President, Linda Wilhelm will be co-hosting a Panel Discussion on Generic Pricing: Advancing Healthcare Sustainability Under the New Generic Agreement at the 22nd Annual Market Access Summit from October 11-12.
Register here: buff.ly/3RF0Tj2
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