Isabel Jordan (she/her)
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seastarbatita.bsky.social
Isabel Jordan (she/her)
@seastarbatita.bsky.social
1.8K followers 550 following 330 posts
New platform. New bio. Nerd. Disabled. Honesty is kindness. Even when it’s hard. #PatientsIncluded #ItDoesntHaveToHurt #PatientPartnership #PatientEngagement

(avatar by @blackmudpuppy)
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seastarbatita.bsky.social
Isabel Jordan (she/her) @seastarbatita.bsky.social · Nov 23
Was honoured to work with @dawnrichards.bsky.social , Zal
Press, and K. Strain on this important paper on #PatientCompensation

pxjournal.org/journal/vol5...

#PatientPartnership
Patient partner compensation in research and health care: the patient perspective on why and how
As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to...
pxjournal.org
seastarbatita.bsky.social
So, southern coast friends… don’t know if feeling nauseous after an earthquake is a thing? Feeling weirdly nauseous/dizzy after this earthquake (5.1 - prob the biggest I’ve felt)
February 21, 2025 at 10:20 PM
seastarbatita.bsky.social
Fantastic paper on the need for culture change to emphasize the importance of pain relief in pediatric procedures. 'One-off' events can accumulate & increase trauma & fear - not just of the specific procedure but of healthcare interactions in general.

bmcmedicine.biomedcentral.com/articles/10....
Moments that matter: childhood pain treatment shapes pain for life—we can do better every time in every child - BMC Medicine
Background Needle procedures, such as vaccinations, blood draws, and intravenous cannulation, are the most frequent source of childhood pain, causing fear and reducing the uptake of medical procedures...
bmcmedicine.biomedcentral.com
February 12, 2025 at 7:17 PM
seastarbatita.bsky.social
💥🎤
dawnrichards.bsky.social Dawn Richards, PhD @dawnrichards.bsky.social · Feb 5
Hey! For those of you working in the #PatientEngagement space, please set up meetings and workshops around times that work for the patient partners you work with/are inviting. Seeing too many 'this is the set date/time of our meeting/workshop' revolving around the academic team members only... /1
February 5, 2025 at 9:10 PM
seastarbatita.bsky.social
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...
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, ...
modelingchange.blogspot.com
February 5, 2025 at 9:08 PM
Reposted by Isabel Jordan (she/her)
kidsinpain.bsky.social
Thank you @dalhousieu.bsky.social for featuring SKIP in Dal Solutions & for highlighting the importance of Canada’s first Pediatric Pain Management health standard (tinyurl.com/a2bbs5r2) in improving children's pain! #ItDoesntHaveToHurt @seastarbatita.bsky.social

Read more: tinyurl.com/jvpj6vc3
Dal Solutions logo and header image of the article titled "One in five kids endure chronic pain. A new pain standard will soothe it" with a child getting an IV
January 30, 2025 at 7:55 PM
seastarbatita.bsky.social
Holy cow — it takes a long time to shop when you’re checking every product to make sure it’s not from the US. #WorthIt
February 3, 2025 at 9:57 PM
seastarbatita.bsky.social
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...
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, ...
modelingchange.blogspot.com
January 23, 2025 at 7:44 PM
seastarbatita.bsky.social
lol re ‘mandatory masking’ in bc healthcare facilities. Was in the ER last night and nobody was wearing a mask except for one healthcare provider. Not. A. Soul.
Greeaaaat 🫤
January 9, 2025 at 11:41 PM
seastarbatita.bsky.social
I’ve got a hankering to binge read all of Cory Doctorow’s catalogue. Staring with the ones that I’ve missed and then going back to the ones that I’ve already read
December 31, 2024 at 8:20 PM
seastarbatita.bsky.social
My new robe kinda makes me look like Darth Sidious and I’m not mad about it
December 26, 2024 at 3:07 AM
Reposted by Isabel Jordan (she/her)
drrehaminator.bsky.social
Lmao rip bozos
schnumn.bsky.social Bex Ollerton @ Thought Bubble A4 Bboy Hall @schnumn.bsky.social · Dec 18
AUTISM SPEAKS CANADA IS SHUTTING DOWN!!! This is a huge win!!!!!!! Source: their website
Thanks to your generosity, Autism Speaks Canada has been able to deliver critical resources such as the Autism Response Team and My Autism Guide, while also investing nearly $5 million in Community Grants to strengthen access to community-based programs. Together with our partners including SickKids, DNAstack and McGill University we have also made important advances in research and science. Together, we have made strides in understanding autism, improving interventions, and successfully advocating for National Autism Strategy in parliament in 2024. After almost 20 years of dedication to building an inclusive Canada and after much consideration, Autism Speaks Canada will conclude its operations on January 31, 2025. The intentional decision to conclude was not taken lightly and has been weighed against responsible stewardship through and through. To honour donor intent, commitments, mission and values, ASC is proud to have maintained a responsible conclusion to this part of its story. We have, and continue to, advocate for increased funding of autism services, advocacy and research to serve this important and growing population. Looking ahead, Autism Speaks operations in the United States will continue fostering key collaborations with Canadian institutions and other global partners. This ongoing work will build on our shared legacy of impactful research and partnerships, advancing innovative, research-driven solutions to enhance the lives of individuals with autism worldwide. Once again, heartfelt thank you for the meaningful impact you’ve made in so many lives. For more information, on services and resources, please visit autismspeaks.org.
December 18, 2024 at 6:46 PM
Reposted by Isabel Jordan (she/her)
broadwaybabyto.bsky.social
TMS for a Cure have an incredible resource for patients including an emergency room guide.

If you have MCAS or another mast cell disease - it’s a great guide to bring with you anytime you need the hospital:

tmsforacure.org/wp-content/u...
tmsforacure.org
December 18, 2024 at 3:42 AM
seastarbatita.bsky.social
Fantastic piece. Really appreciate @lollardfish.bsky.social’s thoughtful commentary
lollardfish.bsky.social David M. Perry @lollardfish.bsky.social · Dec 19
This pleases me (gift):

"I had only one advantage: I’m a historian. One of the true gifts of studying the humanities is not the content we learn in school, but that we develop the skills to learn what we need to know when life takes unexpected turns. So like a proper nerd, I made a reading list."
On RFK Jr., vaccines and my son with autism and Down syndrome
Knowledge is the vaccine for ignorance and fear. But RFK Jr. just wants to let the fever burn.
www.startribune.com
December 19, 2024 at 4:54 AM
Reposted by Isabel Jordan (she/her)
trishgreenhalgh.bsky.social
Here we go again
December 19, 2024 at 4:42 AM
seastarbatita.bsky.social
So does everyone else have a favourite pair of pants and shoes to wear when they go to the ER with a family member?
December 19, 2024 at 4:46 AM
seastarbatita.bsky.social
Driving through four-way stops in my town, honestly makes me go into rage mode

I mean, there are rules to these things. They’re not supposed to be a free for all.
December 14, 2024 at 10:27 PM
Reposted by Isabel Jordan (she/her)
nikkibayley.bsky.social
Hey #Vancouver I only have one order next week and I would love to change that.
I deliver beautiful cheese & charcuterie boards, gorgeous grazing trays & make one-of-a-kind grazing tables.
Perfect gifts for the foodie in your life & for yourself! Love custom orders! Message me boardsofvancouver.ca
December 14, 2024 at 6:46 PM
seastarbatita.bsky.social
😳 checking in on everyone I know that was planning to go ‘The City’ today
December 14, 2024 at 8:45 PM
seastarbatita.bsky.social
Spoke too soon :/ #RareDisease #ChronicIllness
seastarbatita.bsky.social Isabel Jordan (she/her) @seastarbatita.bsky.social · Dec 8
Looks like the current storm may be coming to a close
Photo of a wide gravel path with trees along each side. mountain in the background is lit by sun while most of the sky is overcast. A large, bright rain is in the sky
December 14, 2024 at 5:09 AM
seastarbatita.bsky.social
Ahhhh… sitting outside at 8 in the evening wearing a tank top when it’s only 3C. Thanks perimenopause!!🫠
December 13, 2024 at 3:50 AM
Reposted by Isabel Jordan (she/her)
ferprogram.bsky.social
✨ New to community research? Wondering how to navigate as a patient partner?

We’ve got some encouragement just for you: your presence is already powerful. 🌟 Check out our latest infographic to learn why you don’t need to be a pro in research lingo to make an impact.
Tips For New Research Partners: You don’t need to wow your research team with trying to use of scientific lingo right away. Your confidence with that comes with time and mentorship. Your lived experience and unique insights are already a huge asset to the team. While learning the lingo is helpful, your value lies in being you. Confidence grows with time—so lean into your role, ask questions, and remember: your voice matters. ❤️
December 12, 2024 at 4:00 PM
Reposted by Isabel Jordan (she/her)
kidsinpain.bsky.social
Pain management without discrimination is a fundamental human right. SKIP, with the Health Standards Organization, co-developed the first Pediatric Pain Management standard to ensure equitable care for all kids in Canada. #ItDoesntHaveToHurt #HumanRightsDay
Download the standard tinyurl.com/a2bbs5r2
December 10, 2024 at 5:56 PM
Reposted by Isabel Jordan (she/her)
kidsinpain.bsky.social
➰Check out the December issue of In the LOOP for highlights from our impactful, multi-day ‘Shaping the Future of SKIP’ strategy meeting, exciting new research opportunities, and more! 🌟 Read it here: tinyurl.com/yeym6bv4

Don't miss out - Subscribe at kidsinpain.ca/newsletters/!

#ItDoesntHaveToHurt
December 11, 2024 at 2:02 PM
seastarbatita.bsky.social
@kidsinpain.bsky.social you’re here! You’re here!!
December 10, 2024 at 5:54 PM