Laurie Proulx
@proulxlaurie.bsky.social
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
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
The fact that @picardonhealth.bsky.social shared my essay is reward enough 🙏
Reposted by Laurie Proulx
"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
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
October 17, 2025 at 12:31 PM
"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
by @remotetherapy.space
#ChronicPain
Reposted by Laurie Proulx
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
buff.ly/h8jkJO1
October 8, 2025 at 4:06 PM
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
buff.ly/h8jkJO1
Reposted by Laurie Proulx
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
October 10, 2025 at 4:06 PM
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:
Reposted by Laurie Proulx
📣 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...
📖 Read the full paper: www.jogc.com/article/S170...
September 25, 2025 at 8:47 PM
📣 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...
📖 Read the full paper: www.jogc.com/article/S170...
Reposted by Laurie Proulx
📢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
July 2, 2025 at 8:21 PM
📢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
Reposted by Laurie Proulx
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...
To make it easier to take part, we've created a plain-language explainer that includes some sample feedback: donoharmbc.ca/national-sta...
July 25, 2025 at 5:30 PM
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...
To make it easier to take part, we've created a plain-language explainer that includes some sample feedback: donoharmbc.ca/national-sta...
Reposted by Laurie Proulx
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
May 30, 2025 at 2:12 AM
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.
Reposted by Laurie Proulx
📢 Hope you’ll join this conference about #PatientEngagement in research. It’s open to everyone and completely designed by patient partners👇
📢 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
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
May 28, 2025 at 12:22 PM
📢 Hope you’ll join this conference about #PatientEngagement in research. It’s open to everyone and completely designed by patient partners👇
Reposted by Laurie Proulx
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...
Send us your best!
Rules below:
open.substack.com/pub/authorjm...
May 15, 2025 at 7:27 PM
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...
Send us your best!
Rules below:
open.substack.com/pub/authorjm...
Reposted by Laurie Proulx
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
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
May 20, 2025 at 2:27 PM
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
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
Reposted by Laurie Proulx
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 👇
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
📆 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
May 12, 2025 at 3:10 PM
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 👇
The fact that @picardonhealth.bsky.social shared my essay is reward enough 🙏
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
May 11, 2025 at 3:40 AM
The fact that @picardonhealth.bsky.social shared my essay is reward enough 🙏
Reposted by Laurie Proulx
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
Use the following link buff.ly/bdbgaIO to get involved
April 18, 2025 at 9:20 PM
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
Use the following link buff.ly/bdbgaIO to get involved
Reposted by Laurie Proulx
"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
April 10, 2025 at 2:37 PM
"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
Reposted by Laurie Proulx
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
We have to work hard NOW to keep our metaphorical Blue Sky.
@peacebychocolate.bsky.social
March 28, 2025 at 5:02 PM
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
We have to work hard NOW to keep our metaphorical Blue Sky.
@peacebychocolate.bsky.social
Reposted by Laurie Proulx
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
Rethinking patient-oriented research | CMAJ www.cmaj.ca/content/194/...
Rethinking patient-oriented research
[See related article at www.cmaj.ca/lookup/doi/10.1503/cmaj.220535][1]
In my late teens, I worked in a foreign country with a community very different from my own. It was challenging, but I came to l...
www.cmaj.ca
March 29, 2025 at 6:14 PM
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
Reposted by Laurie Proulx
Infographic on whether you need a measles booster.
March 13, 2025 at 4:37 PM
Infographic on whether you need a measles booster.
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!
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...
docs.google.com
March 13, 2025 at 3:08 PM
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!
Reposted by Laurie Proulx
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
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...
www.bmj.com
February 27, 2025 at 8:50 PM
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
Great advice on sharing your lives experience. I feel similarly about telling pieces yet that’s super challenging with everything I’ve been through.
Our newest blog post explores the journey of learning to share lived experiences effectively. From navigating anxiety to refining communication skills, this piece /1
#patientengagement
#patientengagement
How I Found My Skills In Telling My Story
By Rae Martens
familyengagementinresearch.substack.com
February 15, 2025 at 2:23 PM
Great advice on sharing your lives experience. I feel similarly about telling pieces yet that’s super challenging with everything I’ve been through.
A great read on power dynamics in patient engagement including some great advice for other patient partners who are often given many of the opportunities.
📢 Weekend reading on power dynamics in #PatientEngagement in #Research. Preprint (that means not peer reviewed yet) from our team that includes #PatientPartners and research allies and is about 4 themes concerning power on #PPI teams - osf.io/preprints/os... A bit of a 🧵 for you .../1
February 15, 2025 at 3:10 AM
A great read on power dynamics in patient engagement including some great advice for other patient partners who are often given many of the opportunities.
Reposted by Laurie Proulx
To all the research teams that engage patient partners in their work: pls budget for #PatientEngagement. There's already a power imbalance when patients are invited to a team - not supporting them with a budget makes that worse (whether or not they want compensation for their work) /1
February 12, 2025 at 4:09 PM
To all the research teams that engage patient partners in their work: pls budget for #PatientEngagement. There's already a power imbalance when patients are invited to a team - not supporting them with a budget makes that worse (whether or not they want compensation for their work) /1
Dr. Mohit Kapoor and his team at UHN created a novel modelling tool with #DeepLearning and #MachineLearning that uses multi-omics to explain differences and find connections within diverse groups of #osteoarthritis patients.
Read more ➡️ www.uhnresearch.ca/news/making-...
Read more ➡️ www.uhnresearch.ca/news/making-...
February 14, 2025 at 4:06 AM
Reposted by Laurie Proulx
The brave little boy having one of the first polio vaccines is me. At school I recall two pupils who had leg calipers because of #polio caught before they could be vaccinated and there even was an iron lung for emergency use. #Vaccination saves lives
December 14, 2024 at 10:23 AM
The brave little boy having one of the first polio vaccines is me. At school I recall two pupils who had leg calipers because of #polio caught before they could be vaccinated and there even was an iron lung for emergency use. #Vaccination saves lives