Author | Lightnews

Laurie Proulx

@proulxlaurie.bsky.social

220 followers 190 following 32 posts

All about patient engagement, especially in pharmaceutical policy & research. Living with juvenile rheumatoid arthritis since I was 14. Writer, cat lover, and classical music nerd 🧐

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Laurie Proulx @proulxlaurie.bsky.social · May 11

The fact that @picardonhealth.bsky.social shared my essay is reward enough 🙏

André Picard @picardonhealth @picardonhealth.bsky.social · May 9

Breathing for both of us. For mothers like me, living with chronic illness and #disability, #pregnancy isn’t just a journey – it’s a high-stakes balancing act made more perilous by the lack of research, by @proulxlaurie.bsky.social healthydebate.ca/2025/05/topi... via @healthydebate.bsky.social

Breathing for both of us - Healthy Debate

I walked into the obstetrics unit – 36 weeks pregnant, out of breath and scared. I had been here before, but this time was different.

healthydebate.ca

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Reposted by Laurie Proulx

A Chronic Voice @achronicvoice.com · 18d

"you've learned to edit yourself, to present the digestible version of your #reality. "I'm fine" becomes your mantra, your shield, your prison. The space between what u feel & what u show grows wider until sometimes..u begin to lose yourself.": buff.ly/4qYxHtg

by @remotetherapy.space
#ChronicPain

The Silent Battle: Living in the Shadow of Chronic Pain

There are days when you open your eyes and it's already there, waiting.

buff.ly

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Reposted by Laurie Proulx

CAPA @capa-aca.bsky.social · 26d

Only one more week until our lunchtime session with CAPA patient leaders Linda Wilhelm & Therese Lane! They’ll share their journeys, roles in research & policy, and lessons on EDI. Bring your questions & get key insights in a takeaway infographic!

buff.ly/h8jkJO1

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Reposted by Laurie Proulx

CAPA @capa-aca.bsky.social · 24d

It’s #WorldMentalHealthDay 💚 Youth and young adults with rheumatic disease face unique mental health challenges. Check out our Rheum for Your Mind workshop recordings (a collaboration with Take a Pain Check Foundation) to learn more:

Rheum for your Mind Workshop Recordings now available | Capa

In October 2023, we co-hosted two workshops for youth and young adults with rheumatic diseases with Take a Pain Check Foundation.

buff.ly

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Reposted by Laurie Proulx

IMPaCT @impactrials.bsky.social · Sep 25

📣 New publication! Our multidisciplinary panel "Designing for Dyads" from the 2024 IMPaCT Summit addresses the critical need for improved representation of pregnant and lactating individuals and neonates in clinical trials.

📖 Read the full paper: www.jogc.com/article/S170...

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Reposted by Laurie Proulx

Dawn Richards, PhD @dawnrichards.bsky.social · Jul 2

📢Patient Partners! Been asked to write a Letter of Support (LOS) and not entirely sure what that is? We co-created a resource with patient partners to explain about LOSs & offer some things you may think/ask about when approached: pxphub.org/a-resource-f... #PatientEngagement #PPI

A Resource for Patient Partners in Research about Letters of Support - PxP

Written by Deb Baranec, Jim Kempster, and Dawn Richards Graphic Created by Tianna Magel What is a Letter of Support […]

pxphub.org

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Reposted by Laurie Proulx

DoNoHarm BC @donoharmbc.bsky.social · Jul 25

Advocacy alert 📣 Until August 19, you can give input on a game-changing national standard requiring N95s & other respirators in healthcare (and beyond)!

To make it easier to take part, we've created a plain-language explainer that includes some sample feedback: donoharmbc.ca/national-sta...

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Reposted by Laurie Proulx

NPR @npr.org · May 30

These creative questions are fun to answer and can help reveal people's personalities. Conflict resolution facilitator Priya Parker shares her favorites and explains how to come up with your own.

Want to cut through small talk? Try asking a 'magical question'

These creative questions are fun to answer and can help reveal people's personalities. Conflict resolution facilitator Priya Parker shares her favorites and explains how to come up with your own.

n.pr

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Reposted by Laurie Proulx

Dawn Richards, PhD @dawnrichards.bsky.social · May 28

📢 Hope you’ll join this conference about #PatientEngagement in research. It’s open to everyone and completely designed by patient partners👇

PxP (For Patients, By Patients) @pxphub.bsky.social · May 27

📢 Save the date! PxP (For Patients, By Patients) is coming back September 9-12, 2025! 🎉

A free, virtual event focused on #PatientEngagement — created by patients, for patients.

💌Stay in the loop: sign up for the PxP newsletter (link in bio).

#PxP25 #ForPatientsByPatients

PxP For Patients, By Patients. Virtual Conference. September 9-12 2025.

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Reposted by Laurie Proulx

Frazzled Lit *Closed* @frazzledlit.bsky.social · May 15

Submissions for our Short Story Award competition open soon! First prize is €1000, second prize €500, as well as a €300 third prize. Guest judge @nualaoconnor.bsky.social @jmcm.bsky.social and I cannot wait to read your words.
Send us your best!

Rules below:

open.substack.com/pub/authorjm...

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Reposted by Laurie Proulx

Dawn Richards, PhD @dawnrichards.bsky.social · May 20

It's International #ClinicalTrials Day. Thanks to everyone who contributes to clinical trials 🙏.

And an article co-written with patients on the research ethics review in 🇨🇦 - our thoughts and hopes for the future - healthydebate.ca/2025/05/topi... @healthydebate.bsky.social

How do patients feel about research ethics review? - Healthy Debate

Research ethics reviews in Canada have come under the media spotlight, with claims the process is exploitative and calls for innovation or reform.

healthydebate.ca

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Reposted by Laurie Proulx

Dawn Richards, PhD @dawnrichards.bsky.social · May 12

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 👇

trudyfl.bsky.social @trudyfl.bsky.social · May 11

Thrilled to join fellow patient partners in this upcoming #webinar on growing your influence in patient engagement!

📆 May 12, 2026
⏰ 12 PM PDT

Let’s keep pushing the boundaries of #PatientPartnership

The work is far from finished

Sign up lnkd.in/eiRyWdFR

#PatientVoice #PXP @pxphub.bsky.social

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Laurie Proulx @proulxlaurie.bsky.social · May 11

On my reading list!

Laurie Proulx @proulxlaurie.bsky.social · May 11

The fact that @picardonhealth.bsky.social shared my essay is reward enough 🙏

André Picard @picardonhealth @picardonhealth.bsky.social · May 9

Breathing for both of us - Healthy Debate

I walked into the obstetrics unit – 36 weeks pregnant, out of breath and scared. I had been here before, but this time was different.

healthydebate.ca

1 14

Laurie Proulx @proulxlaurie.bsky.social · May 11

Thank you for sharing, André. It means a lot ❤️

Reposted by Laurie Proulx

CAPA @capa-aca.bsky.social · Apr 18

Marisa McCrae & Sarah McCulloch are two student researchers from McMaster University who are working with CAPA for the next few months (check out the new blog to learn more about them! buff.ly/52VqoME).

Use the following link buff.ly/bdbgaIO to get involved

Call for people living with arthritis to share their creative adaptive strategies to help them function. Eligibility is 18+, having arthritis, and using a life hack. There is a 1 hour orientation on Zoom and a 2 hour focus group. Email mcraem6@mcmaster.ca. Participants will receive a $50 gift card.

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Reposted by Laurie Proulx

Dawn Richards, PhD @dawnrichards.bsky.social · Apr 10

"Patient and public involvement in research reporting" - and the case for why we need to do better www.bmj.com/content/389/.... Grateful to have been part of this editorial team with S. Staniszewska, S. Hopewell and R. Chidebe #PatientEngagement #PPI #ConsumerInvolvement

Patient and public involvement in research reporting

More focus needed to improve PPI reporting in research Patient and public involvement (PPI) has become a key part of health and social care research in many countries with a focus on working with or ...

www.bmj.com

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Laurie Proulx @proulxlaurie.bsky.social · Apr 12

Gréât article, Dawn @sophiestan.bsky.social and team. Do journals also bear some responsibility for not fitting patient contributors into their processes?

Laurie Proulx @proulxlaurie.bsky.social · Apr 1

Don’t we ever!

Reposted by Laurie Proulx

Annette McKinnon @anetto.bsky.social · Mar 28

Peace By Chocolate comes through again with this maple cream ‘Elbows Up’ bar.

We have to work hard NOW to keep our metaphorical Blue Sky.
@peacebychocolate.bsky.social

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Reposted by Laurie Proulx

Deb Maskens @debmaskens.bsky.social · Mar 29

An excellent read in support of patient partners as co-researchers from a unique perspective. (The "rethinking patient-oriented research" title had me on alert...) #ppi #patientengagement

Lawrence (Larry) Mróz @drmroz.bsky.social · Mar 29

Rethinking patient-oriented research | CMAJ www.cmaj.ca/content/194/...

Rethinking patient-oriented research

www.cmaj.ca

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Laurie Proulx @proulxlaurie.bsky.social · Mar 15

Thanks for sharing, Lisa - I figure it’s early days in the open science space so important to hear from others in the patient community.

Laurie Proulx @proulxlaurie.bsky.social · Mar 14

Thanks, Sabrina 🙏 I really appreciate it.

Reposted by Laurie Proulx

Walter Crittenden, MD 🩺 @propofolmonkey.medsky.social · Mar 13

Infographic on whether you need a measles booster.

“Infographic titled ‘Do You Need a Measles Booster?’ with a hashtag #DrKimsKids. It provides guidance on whether a measles booster shot is necessary based on birth year or vaccination history. A vertical arrow with different colored sections represents each category:
• Born before 1957 (Blue): ‘NOPE. You were probably already exposed to measles.’
• Vaccinated between 1957-1962 (Pink): ‘MAYBE. Check with your doctor.’
• Vaccinated between 1963-1967 (Green): ‘YES! The measles vaccine you received is considered ineffective and you will need a booster.’
• Vaccinated between 1968-1989 (Orange): ‘MAYBE. Check with your doctor.’
• Vaccinated after 1989 (Purple): ‘NOPE. If you received two doses, your vaccines are considered effective.’

Each category is color-coded and aligned with the corresponding section of the arrow.”

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Laurie Proulx @proulxlaurie.bsky.social · Mar 13

@coffeeandresearch.bsky.social @biochemmama.bsky.social @debmaskens.bsky.social @kathykastner.bsky.social @gailbellissimo.bsky.social @migrainesallday.bsky.social @lisaridgway8.bsky.social @amaybee.bsky.social @jefferysmithme.bsky.social @libbyhumphris.bsky.social @alexhaagaard.bsky.social