Laurie Proulx

The Silent Battle: Living in the Shadow of Chronic Pain There are days when you open your eyes and it's already there, waiting.

"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

Promotional poster for a CAPA webinar titled “The Patient Room: Chat & Learn for Patient Partners.” Photos of speakers Linda Wilhelm (on the left, speaking at a podium) and Therese Lane (on the right, smiling in front of a colorful mural). The webinar is on October 15, 2025, at 12:00 PM EDT and will last one hour. A QR code is shown for registration. CAPA logo at the bottom.

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

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.

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:

📣 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...

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 […]

📢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 blue, black and yellow graphic features a hand-drawn illustration of a headstrap N95 mask entwined with a stethoscope, with tubing coiled in the shape of a heart. Text reads, Support a National Standard for N95s (asterisk - and other respirators!) in Healthcare. Have your say by August 19, 2025. Summary and template answers available at www.DoNoHarmBC.ca In the corner is the DoNoHarm BC logo and a QR code leading to their website

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...

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.

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.

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

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...

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.

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 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 👇

On my reading list!

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

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

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.

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

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 ...

"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

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

Don’t we ever!

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

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

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.

Thanks, Sabrina 🙏 I really appreciate it.

“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.”

Infographic on whether you need a measles booster.

@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

Tagging a few folks who might be interested in completing or sharing the survey @anetto.bsky.social @cathsmstratton.bsky.social @maureenchats.bsky.social @sgnicholls.bsky.social @dawnrichards.bsky.social @amyprice.bsky.social @disabilitywithanna.bsky.social @sabrinapoirier.bsky.social

Open Science: What do patients or people with lived experience think? My name is Laurie Proulx and I have lived with a chronic condition for most of my life. For the last 15 years, I have been active as a patient partner in research. On March 21, 2025, I am presenting t...

I am presenting at an Open Science event on March 21st & would like to get the patient community involved & influencing how I present the patient perspective. If you have 5 minutes, please consider completing this survey to share your feedback: docs.google.com/forms/d/e/1F... Many thanks!

Patient partner research has a compensation crisis Institutions must value patient partners in research with fair and transparent compensation policies, or their commitments to equity will be hollow, write Amy Price and Dawn P Richards A conflict ar...

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

That’s a really good question. I often experience this delay repeatedly. I chalked it up to years of enduring severe chronic pain and building up a resistance of sorts. I’d be curious what you discover…

Great advice on sharing your lives experience. I feel similarly about telling pieces yet that’s super challenging with everything I’ve been through.