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Family Engagement in Research Training Program @ferprogram.bsky.social · 04/02/2026

Exciting New Research Findings! The FER Team's latest study reveals the long-term (2-year) impact of the Family Engagement in Research (FER) Course on researchers and family members in neurodevelopmental disability and child health research! Link: www.tandfonline.com/doi/full/10....

New
FER
FAMILY ENGAGEMENT
IN RESEARCH
-TRAINING PROGRAM-
Publication
CanChild
McMaster
University
The family engagement in research course: impact on family engagement in neurodevelopmental disability and child health research two years later
Taylor & Francis
Online
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Research Article
The family engagement in research course: impact on family engagement in neurodevelopmental disability and child health research two years later
Alice Kelen Soper 2, Sarah Ali, Kinga Pozniak, Donna Thomson, Connie Putterman, Dayle McCauley, ..show all Received 29 Jul 2025, Accepted 28 Jan 2026, Published online: 04 Feb 2026

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Family Engagement in Research Training Program @ferprogram.bsky.social · 15/01/2026

✨ January FER Community Update is live! ✨ Start your year with intention and connection. In this month’s edition, we explore the power of a simple yet profound way to strengthen patient and family engagement. /1

conta.cc

FER Community Update | January 2026

Email from CanChild Centre for Childhood Disability Research What Does W.A.I.T Mean? January, 2026 Happy New Year! I’ve been following portia.noir (@portia.noir on Threads; @portianoir.com on Bluesky)

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Family Engagement in Research Training Program @ferprogram.bsky.social · 17/12/2025

✨ Our December FER Update is Here! 🎉 As 2025 winds down, we’re grateful for every family member, researcher, trainee, and partner who has helped make the Family Engagement in Research (FER) community vibrant, collaborative, and inspiring. 💛 In this month’s newsletter, you’ll find: /1

conta.cc

FER Community Update | December 2025

Email from CanChild Centre for Childhood Disability Research Happy Holidays! December, 2025 As we wrap up another meaningful year together, we want to extend our heartfelt gratitude to the families, r

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PxP (For Patients, By Patients) @pxphub.bsky.social · 18/11/2025

How can you lay the groundwork for successful patient partnership? #PxP25 speakers shared practical strategies for building research teams where patient partners feel prepared and supported—no matter their experience or role. 🎥 Watch back: www.youtube.com/watch?v=EnJ6...

youtube.com

Laying the groundwork: setting up for success in patient partnership

YouTube video by PxP For Patients, By Patients

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Charis Hill | they/them @beingcharis.bsky.social · 31/10/2025

I keep seeing, "I saw someone post about being hungry yesterday so I gave them groceries" posts. Please don't post about keeping us fed for a pat on the back. We see those posts & it reminds us that people may help us & then ask friends for applause.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 12/11/2025

✨New Blog Alert!✨ We’re thrilled to share our latest post, “From Name to Purpose: Tailoring Your Leadership Journey,” co-written by the dedicated instructor team of the FER Leadership Academy and inspiring leaders from our current cohort. /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 17/10/2025

📣 New FER Community Update is here! As conference season approaches, our latest newsletter opens with an important reminder for researchers, healthcare professionals, and advocates alike: /1

Conference season is here
When you're starting out, it's tempting to attend everything - but here's the secret:
Practice Strategic Visibility
Show up where it aligns with your goals, not where it drains your energy.

Strategic visibility means the intentional effort to be seen, heard, and recognized in ways that advance your meaningful goals.
IN RESEARCH
Even attending events that you might just find fun is strategic!

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Family Engagement in Research Training Program @ferprogram.bsky.social · 12/10/2025

This #ScienceLiteracyWeek, we’re celebrating how learning flows both ways. When people with lived experience partner in research, they gain new skills in science literacy, and studies grow stronger for it. Together, we build understanding, community, and knowledge that moves where it’s needed most.

This is Rae.
Rae started out as a lived experience partner in research.
She was there to share her story,
but she ended up learning a whole lot about the research process.
Partnering in research helped her build her skills in science literacy.
Science Literacy Week: Oct. 6-12, 2025

Partnering in research helped Rae learn about:
How studies are designed and why.
How communities and researchers work together.
How evidence becomes practice and policy.
How a study connects to people's lives.

What is Science Literacy?
Science literacy isn't about memorizing facts.
It's about understanding how science works, so you can ask questions, find trustworthy information,
and make informed choices.
Partnering in research is one way people can learn about the scientific process in real time.

Learning More About the Research Process Helped Rae:
-Better understand her child's complex medical care.
-Navigate her own cancer journey.
-See how lived experience can help shape research.
Building her science literacy skills helped change the way she sees the world.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 18/08/2025

Making Space Takes More Than a Seat This August, we're diving into "making space"—not just inviting family & lived-experience partners to the table, but empowering their voices to be heard and respected (and acted upon!). Plus: /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 18/07/2025

Real impact starts with real voices. Hear from a FER graduate about the power of meaningful collaboration. 👉Learn more: tr.ee/lKU4zw @canchild.bsky.social @kidsbrainhealth.bsky.social #FERCourse #FamilyEngagement

FAMILY ENGAGEMENT
IN RESEARCH
- TRAINING PROGRAM -

"The course was really structured to give you a lot of tools and
confidence
to be able to do family engagement."
- Researcher
CanChild
McMaster
University

CIHR IRSC
Canadian Institutes of
Instituts de recherche
kids
brain health network
réseau pour la santé du cerveau des enfants

FAMILY ENGAGEMENT
IN RESEARCH
- TRAINING PROGRAM -

"This course has been fulfilling in so many ways.
I have learned a lot, but it was the conversations and connections that ring true"
- Family Member
CanChild
McMaster
University

CIHR IRSC
Canadian Institutes of
Instituts de recherche
kids brain health network
réseau pour
la santé du cerveau des enfants

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Family Engagement in Research Training Program @ferprogram.bsky.social · 15/07/2025

📰 Our July 2025 FER Community Update is live! Catch up on what’s new & what’s next in family engagement in research. 📖 Read: tinyurl.com/FERJuly2025 💬 What helped you feel more ready to engage in meaningful ways? Comment below—we’d love to hear! #FERProgram #FamilyEngagement

FER Community Update
July 2025
8 tools that bring people with lived experience and researchers bring to research.
Plus: A recap of FER in Germany 2025
Congratulations to multiple FER grads in our community
Upcoming events
Our favourite readings and resources we saw this month

What helped you show up prepared, or made you fee more ready to engage in meaningful ways? Comment below!

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Family Engagement in Research Training Program @ferprogram.bsky.social · 14/07/2025

🇩🇪 FER in Germany! So proud to see FER grads at #EACD2025 sharing how family voices shape care + research. From parenting to systems change, they’re leading the way. Want to join them? ➡️ ferprogram.ca #FERProgram #MedicalParent #DisabilityResearch #HealthEquity

Collage of attendees from the EACD conference who were also graduates of the course.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 11/07/2025

📣 Last day to apply! Are you a parent or caregiver of a child with a disability or health condition? Join the 10-week FER Course to build research skills & connect with families & researchers. 🌍 Open to all 🔗 tr.ee/Z1Kj79 #momlife #Parenting

Last change to apply for the Fall 2025 FER Course!

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Family Engagement in Research Training Program @ferprogram.bsky.social · 09/07/2025

3 Things Parents Might Not Know About Partnering in Research You can shape research, not just join it. Your lived experience is expertise. Research with parents hits closer to home for real families. Applications are still open for the Family Engagement in Research Course! /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 09/07/2025

If you are in the field of neurodevelopmental disability research, consider giving Kids Brain Health Network a follow!

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Family Engagement in Research Training Program @ferprogram.bsky.social · 03/07/2025

Good news! The deadline to apply for the next Family Engagement in Research (FER) Course has been extended! Behind every child is a story that matters… Every child’s journey is unique, shaped by their dreams, challenges, and the people who walk beside them. /1 #patientengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 03/07/2025

Good news! The deadline to apply for the next Family Engagement in Research (FER) Course has been extended! Whether you've already applied or still thinking about it, researchers, now’s a great time to reach out to your current patient or community partner and apply together. /1 #patientengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 20/06/2025

Ready to join a growing community of researchers and families working together? 🎉 Applications are OPEN for the Family Engagement in Research Course!  🗓️ Fall 2025: Sept 15 – Nov 23  🗓️ Winter 2026: Jan 19 – Mar 29  💻 All online. 👉Learn more: tr.ee/lKU4zw 🔗Apply now: tr.ee/Z1Kj79 #PatientEngagement

participants rated their overall course satisfaction on a scale of 1 to 10, with an average score of 8.6.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 26/06/2025

Reflecting on partnership in research In this thoughtful blog post from members and partners from Bloorview Research Institute at Holland Bloorview, they share their journey of collaborating with a research team, from gaining the opportunity to partner, /1 #PatientEngagement

open.substack.com

Reflecting on our experience of partnering in research: Youth and trainee perspectives.

By Brian Xiao, Danielle DuPlessis, Josh Shore

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Family Engagement in Research Training Program @ferprogram.bsky.social · 20/06/2025

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Family Engagement in Research Training Program @ferprogram.bsky.social · 16/06/2025

At the Family Engagement in Research (FER) Course, our work is grounded in four core values: 💛Authenticity 🌍Inclusivity 👥Collaboration 🙌🏽Mutual Respect Do these resonate with you? Come join us! /1 #PatientEngagement #ConsumerInvolvement

Our values
Authenticity: We build and foster trusting relationships
Inclusivity: We foster co-learning in supportive environments
Collaboration: We effectively work together
for change
Mutual Respect: We celebrate all knowing and experience

At the Family Engagement in Research (FER) Course, our work is grounded in four core values:

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Family Engagement in Research Training Program @ferprogram.bsky.social · 13/06/2025

Are you a researcher looking to strengthen your ability to collaborate meaningfully with families in research? This course is for you! 🎉 Applications are OPEN for the Family Engagement in Research Course!  /1 #PatientEngagement

"I now feel better equipped to work alongside parents as research partners." -Researcher Graduate

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Family Engagement in Research Training Program @ferprogram.bsky.social · 12/06/2025

🌟 Spring Open House Alert! 🌟 The Open House is your opportunity to learn about the Family Engagement in Research (FER) Course, meet members of our team, and explore how our program can help you feel confident to partner in research. /1 #PatientEngagement

The Family Engagement in Research (FER) Course
Spring OPEN HOUSE
Thinking about taking the
FER Course? Not sure what it's really about? Have questions for us?
Wed June 18, 7:30-8:30pm ET
Tues June 24, 12-1pm ET
Online via Zoom
Registration link in bio
Can't make it?
Connect offline
fer@mcmaster.ca
ferprogram.ca

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Family Engagement in Research Training Program @ferprogram.bsky.social · 11/06/2025

🌍 Did you know the Family Engagement in Research (FER) Course has welcomed learners from 23 countries around the world? Families, individuals with lived experience and researchers from all backgrounds have come together to learn, connect, and make research more meaningful. #patientengagenent /1

23 countries Map with pins. 713 grads. Join us! Application now open!

Learn more about the FER Course! Ferprogram.ca fer@mcmaster.ca @ferprogram (Instagram)

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Family Engagement in Research Training Program @ferprogram.bsky.social · 09/06/2025

🌟 At FER, our vision is to transform the culture and practice of family engagement in health research and health care. Sounds like something you believe in too? 🎉 Applications are OPEN for the Family Engagement in Research Course!  /1 #consumerinvolvement #patientengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 06/06/2025

Applications are OPEN for the Family Engagement in Research Course! 💬 Whether you’re new to family engagement research or looking to deepen your perspective, this course will offer the tools and mentorship to help you! /1 @canchild.bsky.social #consumerinvolvement #patientengagement

"I think the course was really structured to give you a lot of tools and confidence to be able to do
family engagement."
- Researcher

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Family Engagement in Research Training Program @ferprogram.bsky.social · 05/06/2025

Lived experience is a powerful tool and it belongs in health research too. The FER Course supports #parents in learning how to work with researchers as partners. Apply today: bit.ly/43vXrvy Learn more: bit.ly/43g8zxK #patientengagement #consumerinvolvement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 04/06/2025

🎉 Applications are OPEN for the Family Engagement in Research Course!  💪 Our mission is simple yet powerful: to train, mentor and mobilize the next generation of advocates, champions, and leaders in family engagement. @canchild.bsky.social #PatientEngagement #ConsumerInvolvement /1

Our mission is to train, mentor,
and mobilize the next generation of advocates, champions, and leaders in family engagement.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 03/06/2025

🌟 At the Family Engagement in Research (FER) Training Program, our work is grounded in four core values: Authenticity, Inclusivity, Collaboration, and Mutual Respect. #PatientEngagement /1

Authenticity: We build and foster trusting relationships
Inclusivity: We foster co-learning in supportive environments
Collaboration: We effectively work together
for change
Mutual respect: We celebrate all knowing and experience

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Family Engagement in Research Training Program @ferprogram.bsky.social · 02/06/2025

Are you a researcher, student, or family member interested in child health research and want to learn more about how to engage in meaningful research? 🚨 Exciting news! Applications for the Family Engagement in Research (FER) Course are now open! 🚀✨ /1

Promotional graphic for the Family Engagement in Research (FER) Course. A father and young child are reading a book together. Text reads: “Applications now open! Family Engagement in Research Course – Fall 2025: Sept 15 to Nov 23 | Winter 2026: Jan 19 to Mar 29.” Partner logos appear at the bottom, including CanChild, McMaster University, Kids Brain Health Network, and Children’s Health Research.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 31/05/2025

“Finding Our Way: Navigating Supports and Resources in Family Engagement” is a series born out of the influence of many of our learners who expressed interest in getting to know “what’s out there” in the world of family engagement. #patientengagement #consumerinvolvement /1

open.substack.com

Pull Up a Chair at the PxP Hub: Where Lived Experience Leads

Finding Our Way: Navigating Supports and Resources in Family Engagement – Part 1

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Donna Thomson @donna4walls.bsky.social · 28/05/2025

This is so good! 5 Tips for Sharing Feedback in Youth-Researcher Partnerships open.substack.com/pub/familyen... #Research #Youth #Engagement @ferprogram.bsky.social

open.substack.com

5 Tips for Sharing Feedback in Youth-Researcher Partnerships

By: Brooke Allemang, Amanda St. Dennis, Linda Nguyen, Logan Wong, Sunny Yimeng Dong

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Family Engagement in Research Training Program @ferprogram.bsky.social · 27/05/2025

5 Tips for Sharing Feedback in Youth-Researcher Partnerships This new co-written blog post helps make feedback clear, kind, and collaborative — so youth partners feel heard and supported. #patientengagement #consumerinvolvement familyengagementinresearch.substack.com/p/5-tips-for...

familyengagementinresearch.substack.com

5 Tips for Sharing Feedback in Youth-Researcher Partnerships

By: Brooke Allemang, Amanda St. Dennis, Linda Nguyen, Logan Wong, Sunny Yimeng Dong

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Family Engagement in Research Training Program @ferprogram.bsky.social · 06/05/2025

What’s Next After the FER Course? Reconnect. Reflect. Reimagine Your Learning Journey. Join us for a special online event bringing together graduates of the Family Engagement in Research (FER) course! /1 #patientengagement

FER Knowledge Exchange: Building Skills and Community Presents
What’s Next After The FER Course?
Join us for a presentation and discussion on next steps for you as an ongoing learner after taking the FER Course.
Pick one of two options for a time to join us for a discussion. This session will be recorded.

Mon. June 2, 2-3:30pm EST
https://lu.ma/pukdq7rs

Wed. June 11, 7-8:30pm EST
https://lu.ma/f3vsmj1l

Questions? Email Rae at martensr@mcmaster.ca

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Family Engagement in Research Training Program @ferprogram.bsky.social · 01/05/2025

🚨 Applications for the Family Engagement in Research (FER) Course are NOW OPEN! 🎉 Are you passionate about bridging the gap between families and researchers? /1 #patientengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 23/05/2025

🎉 Applications are OPEN for the Family Engagement in Research Course! 💬 Learn how to team up with researchers, share your real-life wisdom, and (yes) make research way more relevant. #parenting #patientengagement /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 23/05/2025

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Donna Thomson @donna4walls.bsky.social · 23/05/2025

Attention #researchers and #family caregiver research partners - check out this fabulous learning opportunity! Always free for families. Apply now! I highly recommend it (but I might be biased because I co-founded the program 😀)

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Family Engagement in Research Training Program @ferprogram.bsky.social · 08/05/2025

Members of our FER Community Vicky Forster, Brooke Allemang, and Sam Micsinszki took the stage at Redefining Patient Engagement: Shaping Research Together to show what real partnership looks like in action. From lived experience to research leadership, their panel at /1

Four people sitting on a stage on a panel with their photos on a PowerPoint behind them.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 08/05/2025

🌟 New FER Community Update – May 2025 🌟 This month, we’re exploring what it truly means to be ready for engagement—not just mentally, but physically and emotionally. Discover insights on creating supportive spaces for collaboration and check out opportunities like: #PatientEngagement /1

myemail.constantcontact.com

FER Community Update | May 2025

Email from CanChild Centre for Childhood Disability Research What Does It Mean To Be Ready? May, 2025 Happy May everyone! I’ve been thinking about readiness to be engaged in family engagement lately.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 06/05/2025

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Family Engagement in Research Training Program @ferprogram.bsky.social · 01/05/2025

🚨 Applications for the Family Engagement in Research (FER) Course are NOW OPEN! 🎉 Are you passionate about bridging the gap between families and researchers? /1 #patientengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 30/04/2025

“I didn’t know I was allowed to speak up.” That’s what one patient partner told us after joining a research project supported by the Family Engagement in Research (FER) Program. They had lived experience. They had ideas. But no one had ever asked. /1 #patientengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 29/04/2025

It was It was an honor to share last night at the Canadian Rare Disease Network’s Research Showcase. I was also unbelievably proud of the number of FER graduates in the room telling the story of their work and their pathways in learning. #patientengagement #familyengagement

Screen shot of a linked in post from Sara Pot that says “Honoured to hear through Zoom Family Engagement in Research Training Program and RareKids-CAN family” has photos of three white women speaking at separate times on stage.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 23/04/2025

To introduce some of the team this cohort year, I asked the question: "What is your best advice when it comes to #patientengagement and #familyengagement ?". /1

Masculine presenting person with short hair and wearing glasses and a blue button up shirt.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 22/04/2025

Community-engaged research just hits different. When people with lived experience are at the table from the start, the work has more real life application. Shimmy accordingly. #ShimmyADay #PatientEngagement #FamilyEngagement #KnowledgeMobilization #HealthResearch #CoDesignInAction #ShimmyForScience

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Family Engagement in Research Training Program @ferprogram.bsky.social · 22/04/2025

Getting Ready to Partner in Policy 101 Join our spring series designed to support lived experience and patient partners in getting ready to share their stories and insights alongside researchers and organizations. /1 #PatientEngagement

Getting Ready to Partner in Policy 101
A spring series to ensure lived experience or patient partners to get ready to share their experiences alongside researchers or organizations.
Who Can Attend?:
* People with lived experience or patient and/or family partners
* Researchers, Organization Members
When Is It?:
* May 12, 7pm EST: Readiness for Partners
* May 19, 7pm EST: Readiness for Professionals
Registration Links Here: https://lu.ma/ffx93wet
https://lu.ma/ur9p3gqd

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Family Engagement in Research Training Program @ferprogram.bsky.social · 17/04/2025

April's FER Community Update is here! Discover how lived experience is shaping research, explore opportunities to share your story, and learn strategies for navigating conflict in patient engagement teams. Read more: myemail.constantcontact.com/FER-Communit... #PatientEngagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 15/04/2025

Feedback is data. In patient-oriented research, feedback from patient partners is a gift. When we treat it as valuable data, not personal critique, we build stronger, healthier partnerships. That’s feedback literacy in action. #PatientOrientedResearch #FeedbackLiteracy #LivedExperienceMatters

What is Feedback Literacy—and Why Does It Matter in Patient-Oriented Research?

Feedback literacy is the ability to understand, interpret, and use feedback effectively. It’s not just about receiving comments—it’s about knowing how to reflect on them, respond meaningfully, and use what you learn to grow.

In patient-oriented research, when patient partners share their experiences through evaluations,

that feedback isn’t just “nice to know”—it’s valuable data. It tells us what’s working (or not) in how we’re building and sustaining partnerships. Treating this feedback as meaningful input—not as judgment—helps researchers and facilitators improve the ways they collaborate, communicate, and create more equitable, inclusive research spaces.

In short: feedback from patient partners isn’t personal—it’s purposeful. And having feedback literacy helps us turn those insights into better practice.

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