iiinova — where your digital self keeps evolving

Reposted by Laurie Proulx

SPORAlliance @sporalliance.bsky.social · 19/12/2025

Check out our December 2025 e-newsletter for the latest SPOR Evidence Alliance updates, including important announcements, member spotlights, impactful publications, and engagement opportunities! Read it here: mailchi.mp/smh/spor-evi... #PatientEngagement #KnowledgeSynthesis #KnowledgeMobilization

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Reposted by Laurie Proulx

CAPA @capa-aca.bsky.social · 05/01/2026

✨ What We’ve Been Up To: Patient Partnership Edition We hosted The Patient Room, a lunchtime webinar with Linda Wilhelm and Therese Lane to support patient partners and advisors working in research and policy. If you missed it, visit this link for more: buff.ly/wLMFUr5

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Annette McKinnon @anetto.bsky.social · 16/12/2025

Working onsite rather than teleworking increased risk by 57%; infrequent or inconsistent use of FFP2/FFP3 masks increased it by up to 52%

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Reposted by Laurie Proulx

Iva Cheung @ivacheung.com · 17/12/2025

An international team of patient partners, including @dawnrichards.bsky.social, is studying patient partners' experiences with authorship of peer-reviewed publications. If you have such experience, consider completing this survey! survey.alchemer.eu/s3/90907829/... #ParticipateInResearch

survey.alchemer.eu

Patient and Caregiver Authorship Survey

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Reposted by Laurie Proulx

A Chronic Voice @achronicvoice.com · 17/10/2025

"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

buff.ly

The Silent Battle: Living in the Shadow of Chronic Pain

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

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Reposted by Laurie Proulx

CAPA @capa-aca.bsky.social · 08/10/2025

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 · 10/10/2025

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:

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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.

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Reposted by Laurie Proulx

IMPaCT @impactrials.bsky.social · 25/09/2025

📣 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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Dawn Richards, PhD @dawnrichards.bsky.social · 02/07/2025

📢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

pxphub.org

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 […]

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DoNoHarm BC @donoharmbc.bsky.social · 25/07/2025

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 · 30/05/2025

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

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.

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Dawn Richards, PhD @dawnrichards.bsky.social · 28/05/2025

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

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Frazzled Lit *Closed for Submissions* @frazzledlit.bsky.social · 15/05/2025

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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Dawn Richards, PhD @dawnrichards.bsky.social · 20/05/2025

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

healthydebate.ca

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.

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Reposted by Laurie Proulx

Dawn Richards, PhD @dawnrichards.bsky.social · 12/05/2025

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 👇

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Reposted by Laurie Proulx

CAPA @capa-aca.bsky.social · 18/04/2025

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 · 10/04/2025

"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

bmj.com

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 ...

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Reposted by Laurie Proulx

Annette McKinnon @anetto.bsky.social · 28/03/2025

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 · 29/03/2025

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

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Walter Crittenden, MD 🩺 @propofolmonkey.medsky.social · 13/03/2025

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 · 13/03/2025

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!

docs.google.com

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...

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Laurie Proulx @proulxlaurie.bsky.social · 15/02/2025

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

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Laurie Proulx @proulxlaurie.bsky.social · 15/02/2025

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.

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Dawn Richards, PhD @dawnrichards.bsky.social · 12/02/2025

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

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Sir David Haslam @david-haslam.bsky.social · 14/12/2024

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

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Reposted by Laurie Proulx

Buy True North @buytruenorth.bsky.social · 02/02/2025

Confused by labels, like Made in Canada or Product of Canada? So are we, so we dug a little deeper to try to find answers. Check out our next blog post to learn about the differences: buff.ly/4jDBzW2 #BuyTrueNorth #BuyCanadianMade #BuyCanada #BuyCanadian

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Dawn Richards, PhD @dawnrichards.bsky.social · 22/01/2025

Not everyone is convinced about #PatientEngagement in research - I get that. I wrote a letter to those folks to challenge some of their thoughts and in hopes of getting them to reflect on these a bit more - www.bmj.com/content/388/.... Thanks to @bmj.com for publishing.

bmj.com

Dear sceptics of patient engagement in research

Dawn P Richards challenges some of the common objections to patient engagement in research I have been in a lot of spaces over the years where people were not convinced about patient engagement in re...

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Laurie Proulx @proulxlaurie.bsky.social · 01/01/2025

Happy new year from our very distinguished Russian Blue, Smokey. Next pic will include a suit 😏 #CatsofBlueSky

Grey cat sitting on a cat condo looking directly at the camera. He is wrapped in an old blanket.

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Laurie Proulx @proulxlaurie.bsky.social · 11/12/2024

My beautiful Russian Blue was trying to tell me something yesterday. I got up for a moment and there he was! #catsofbluesky

Black chair with a sleek grey Russian Blue cat sitting on the chair. The cat has tucked his paws in (« loafing » for cat lovers) and the chair is beside an office desk.

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Laurie Proulx @proulxlaurie.bsky.social · 05/12/2024

One of my ongoing projects with more to come in 2025!

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Laurie Proulx @proulxlaurie.bsky.social · 05/12/2024

I’m kind of loving my top 5 artists listened to on Spotify this year - a strong dose of Indie rock, French singer/songwriter Zaz, and good old Bach 😭

Red image with depicting top 5 artists listened to in 2024

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Reposted by Laurie Proulx

Alex Haagaard (they/them) @alexhaagaard.bsky.social · 22/11/2024

Not to mention the unpaid research, administrative and diagnostic labour of chronically ill people 👀

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Dawn Richards, PhD @dawnrichards.bsky.social · 04/12/2024

Compensating patient partners on #PatientEngagement teams is about equity. @kwaneleasante.bsky.social wrote this powerful piece about renumeration of African patient partners being about health justice www.bmj.com/content/387/.... Pls take a few mins to learn from this global patient leader

bmj.com

Remuneration of African patient partners is an important tool for health justice

Consistent and fair remuneration is essential to empower African patient partners to contribute to health decisions and policies that affect them, writes Kwanele Asante Global calls for patient part...

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Dr. Danny Sands @drdannysands.bsky.social · 03/12/2024

I'm thrilled that @amyprice.bsky.social is the new editor-in-chief of the Journal of Participatory Medicine. Amy has shared her vision and plans for innovations at the JoPM. Thanks to Sue Woods @ Matthew Hudson for their contributions as journal editors. participatorymedicine.org/2024/welcomi...

participatorymedicine.org

Welcoming Dr. Amy Price, DPhil as the Editor-in-Chief for the Journal of Participatory Medicine - Society for Participatory Medicine

JMIR Publications and the Society for Participatory Medicine are excited to announce Dr. Amy Price as the new editor-in-chief of the Journal of Participatory Medicine effective November 1, 2024. Dr. P...

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OpenAcademics @openacademics.bsky.social · 01/12/2024

Watch out for signs of burnout! Set boundaries and take care of your mental (and physical) health. Great infographic by Dr. Carolyn Frost⬇️ #Academics #Academicsky #mentalhealth #worklife #worklifebalance

8 quiet signs your boundaries need a reset. By Dr. Carolyn Frost, Strategic Lifestyle Design.

1️⃣ You apologize for basic needs

2️⃣ You're always available

3️⃣ You feel resentment building

4️⃣ You don't take your paid time off

5️⃣ You respond instantly to everything

6️⃣ You feel guilty setting limits

7️⃣ You over-explain everything

8️⃣ You default to 'yes'

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Rae Martens ♿️ @coffeeandresearch.bsky.social · 03/12/2024

Have sciencey youth in your life? This is a pretty cool opportunity! 🧪Calling young leaders in Canada ! Are you 18-28 and passionate about science and society? Apply to join the Chief Science Advisor’s Youth Council! 🗓️ Deadline: Dec 15, 11:59 PM EST. 📄 ️ Apply here: science.gc.ca/site/science...

science.gc.ca

Apply for the CSA-YC

We are recruiting 15 ambitious and motivated young individuals from across Canada to join the third cohort of the Chief Science Advisor’s Youth Council (CSA-YC). Status

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Reposted by Laurie Proulx

Isabel Jordan (she/her) @seastarbatita.bsky.social · 03/12/2024

Today, on the International Day for Persons with Disabilities, I am beyond proud that the Canadian Institutes for Health Research have released their Anti-Ableism Action Plan, entitled "From Intention to Impact". 1/3 cihr-irsc.gc.ca/e/54121.html...

cihr-irsc.gc.ca

From Intention to Impact: CIHR Anti-Ableism Action Plan - CIHR

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Laurie Proulx @proulxlaurie.bsky.social · 04/12/2024

I am getting settled into BlueSky as I’m feeling lost on X these days 😔 I am all about listening to patients/people with lived experience and engaging them in a meaningful way in healthcare policy making and research. If you’re interested in these topics, let’s follow each other! #patientengagement

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Bryn Robinson, PhD @brynphd.com · 03/12/2024

Resharing to the #PatientEngagement feed

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Rae Martens ♿️ @coffeeandresearch.bsky.social · 03/12/2024

This is so great to see! Did you know as someone with lived experience in some cases you can be a reviewer?

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