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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 · 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

Continued from above: Building skills in science literacy is a positive byproduct of partnering in research.

Building skills in science literacy is a positive byproduct of partnering in research.
When people with lived experience partner in research, they get to learn more about the whole research process.
Their contributions build a stronger study.
Communities get to work together,
and knowledge moves where it's needed most.
While partnering in research is just one way to learn, science literacy is

Want to build your own science literacy skills?
Science Up First:
Canadian Association of
Science Centres
Healthcare For Real:
Canadian
Medical Association
Free Science
Literacy Course at the University of
Alberta

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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 · 18/07/2025

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 · 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 · 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 · 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 · 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 · 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 · 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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Family Engagement in Research Training Program @ferprogram.bsky.social · 03/04/2025

What does family engagement mean to you? This is what many of our learners are thinking about! #patientengagement Learn more about the Family Engagement in Research Training Program at ferprogram.ca

What does family engagementi in research mean to you? Review answers Active Participation Collaboartion collaboration and authenticity their lived Collective leadership Co design and collaboaration transparent each meaningful equal equally enriched perspectives Reflective better impact authenticity culture change equality Collaboration expertise experience Itterative partnership Equity researchers dynamic better research nonhierarchical Research done with famailies for families a culture shift in health research Inclusion Lived Experience Consensus choice making Change making'

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Family Engagement in Research Training Program @ferprogram.bsky.social · 28/03/2025

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

Femme presenting person with long brown hair and wearing a red sweater. Standing in front of a white background.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 25/03/2025

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 ?". Hi, I'm an educator, facilitator, and parent of four, including two fantastic teens who require constant care specific to their rare /1

Femme presenting person with long blonde hair and a green shirt. Standing against a brick background.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 24/03/2025

Robyn Land is an advocate, peer mentor, and mother to two neurodivergent children. Her youngest was born with a severe congenital heart defect, fueling her passion for navigating and supporting her children’s needs. /1

Femme presenting person with black and white glasses, grey top in front of a grey background.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 21/03/2025

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 ?". My name is Rae and I am a Knowledge Broker with both the FER Training Program as well as the Azrieli Accelerator at UCalgary. /1

white woman with pink hair and blue glasses

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Family Engagement in Research Training Program @ferprogram.bsky.social · 20/03/2025

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 ?". My name is Emma, and I'm a co-instructor for the 2025 INT FER cohort. I completed my Master of Science in /1

White femme presenting person with long brown hair on a beige background.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 19/03/2025

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 ?". Genevieve Currie is a parent of two children, both which have neurodevelopmental disorders, and one which is a rare medically complex /1

Image of a white woman with reddish blonde hair, smiling against a grey background.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 11/02/2025

The experience of partnering with researchers is one that many find to be both hard work and personally gratifying. Have questions about family engagement? Leave it in the comments.#patient #healthcare #research #science #patientengagement #familyengagement

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Family Engagement in Research Training Program @ferprogram.bsky.social · 11/02/2025

Your Story Matters, But So Does Your Well-Being. Sharing your lived experience in research, advocacy, or healthcare spaces is powerful—but it also takes emotional labor. #PatientEngagement #FamilyEngagement /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 23/01/2025

Science Communication Networking Night Family engagement in research is about connection, collaboration, and amplifying the voices of those most impacted. Science communication takes this a step further by transforming research into accessible, relatable, and meaningful stories for the broader /1

Science Communication Networking Night
Work on your communication skills and build stronger relationships
Family engagement in research is about connection, collaboration, and amplifying the voices of those most impacted. Science communication takes this a step further by making research more accessible.
Join us for what will be a lively community of practice!
Monday, Feb. 17
7pm EST, Online

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Family Engagement in Research Training Program @ferprogram.bsky.social · 20/01/2025

🌟 Join Us for the FER Knowledge Exchange Event! 🌟 Event: Supportive Engagement Practices in Pediatric Palliative Care Related Research Thursday, February 27, 9:30am-10:30am MST, 11:30-12:30am EST /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 16/01/2025

There are many lessons that partners in research learn over time. Which is why it can help so much to have a supportive community of people who partner too to learn from. /1 #PatientEngagement #FamilyEngagement #Healthcare #Research

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Family Engagement in Research Training Program @ferprogram.bsky.social · 16/01/2025

Looking to build meaningful partnerships in your research? Here are some practical tips to help you connect with partners who can bring lived experience and unique perspectives to your work. It all starts with a genuine connection! #PatientEngagement #FamilyEngagement

"Where do I find partners
for my research??"
Great question! Start by:
Volunteering to connect with diagnosis communities.
Reaching out to diagnosis organizations—share your research so far!
Building a community of practice; ask fellow students for ideas.
Sharing your work on platforms like LinkedIn, where partners are already engaged.
It all begins with a simple hello. Take the time to listen—maybe even buy them a coffee—and learn about their life and experiences. Partnerships grow from genuine connections!

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Family Engagement in Research Training Program @ferprogram.bsky.social · 13/01/2025

"Find a group of people who challenge and inspire you, spend a lot of time with them, and it will change your life forever." -Amy Poehler The newest group of FER instructors recently met to get ready together for another amazing term of cohorts for the Family Engagement in Research Course. /1

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Family Engagement in Research Training Program @ferprogram.bsky.social · 08/01/2025

Researchers, trainees and clinicians doing the work of #patientengagement and #familyengagement would benefit from opportunities to assess how conversations went with lived experience partners on your team. Think of it as your “check engine light”. It’s a designed mechanism to ensure you check /1

Graphic depicting a check engine light for a car.

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Family Engagement in Research Training Program @ferprogram.bsky.social · 02/01/2025

You might be wondering, your family or friends might be wondering... What is family engagement in research? It’s about families and researchers working together as partners, valuing lived experiences to create meaningful, impactful studies. From shaping questions to sharing results, family /1

Family engagement in research is an approach that actively involves families as equal partners in the research process. It goes beyond traditional participation by valuing their lived experiences, perspectives, and expertise to co-create research that is meaningful, relevant, and impactful.
This engagement can happen at every stage—from shaping research questions and study design to interpreting results and sharing findings. The goal is to ensure that research addresses real-world priorities and leads to outcomes that truly benefit families and communities. Interested in Learning More?
Check Out ferprogram.ca

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Family Engagement in Research Training Program @ferprogram.bsky.social · 30/12/2024

Have you heard about the Family Engagement in Research Program? 🎓✨ This unique program brings together families, researchers, and clinicians to build partnerships that improve health research. #patientengagement /1

Family Engagement in Research Program
Our mission is to train, mentor, and mobilize the next generation of advocates, champions, and leaders in family engagement.
Our vision is to transform the culture and practice of family engagement in health research and health care.
Authenticity, Inclusivity, Collaboration, Mutual Respect

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