August, 2025

Happy August everyone!

Making Space Is More Than Just Having A Seat At The Table

So, you’ve invited a person with lived experience to the planning table—that’s great! But it’s important to remember: being present at the table is one thing; having the space and confidence to speak up is another. And for many lived experience/family partners, the latter doesn’t come easily.

In fact, one of the most common questions I hear from lived experience/family partners is whether they’re “allowed” to speak up at all. Sometimes, when colleagues talk with each other, the conversation flows naturally because they’re used to working together. But this dynamic can unintentionally leave less room for the person with lived experience to share their insights.

What can you do as a researcher?

• Be intentional and ask your partner if they have any thoughts or questions throughout your meetings.
• Provide an outlet for feedback and suggestions through email or a zoom call. That way they have time to process all the information they took in.
• Cultivate an engagement environment where your colleagues also understand the mechanisms for making space for the insights of family partners and people with lived experience.

Remember, making space for family partners and people with lived experience isn’t just about inviting them, it’s about ensuring their voices are heard, valued, and acted upon. When we’re intentional about creating that space, we don’t just tick a box, we enrich the conversation, strengthen decisions, and build truly collaborative partnerships.

Connect with me!

Warmest regards,

Rae Martens

FER Knowledge Broker

Research Engagement Strategist

Request a chat with Rae, FER Knowledge Broker

👀 Looking for lived experience opportunities in this newsletter? Look for 🌟 to find highlighted opportunities!

What's Happening in the FER Community?

FER Community News and Updates

ICYMI 🌟 Applications Open: Family Engagement Leadership Academy

Are you a graduate of the FER Course looking to grow your leadership in family engagement?

Join this 10-week online program and earn a McMaster University Certificate of Completion while building essential skills in family engagement leadership.

📅 Wednesdays | Sept 17 – Nov 19, 2025 | 12–2 PM ET

💲 $1,800 CAD

🚨 Only 12 spots available

📌 Apply by August 27, 2025

ℹ️ More info: https://tr.ee/hP21rs

🔗 Application link: https://lnkd.in/gcAEr7BW

Connect with us if you have questions: fer@mcmaster.ca

FER Course Grads on Rarely Familiar Podcast 🌟

In this episode, hosts Haley (FER Course Winter 2024), Tram, and Jen discuss family engagement in medical research at Gillette Children's Hospital, with guest Dr. Rhonda Cady (FER Course Winter 2023), a research scientist, and mentor to Haley. Rhonda explains the concept of Family Engagement in Research, emphasizing the need to include families and individuals with lived experiences in the research design process. They discuss the benefits, challenges, and the impact of involving Lived Experience Partners in medical research. The episode underscores the significance of utilizing the expertise of those directly affected by medical conditions to improve and shape future research and healthcare services.

New Book by Maude Champagne

Maude Champagne's (FER Course Winter 2021) new book, "Decoding Aggression, Complex Behaviours and Brain-Based Disabilities: Practical Strategies for Addressing Aggression Within the Family System" provides a comprehensive, neuroscience-informed approach to understanding and addressing Aggression Toward Family/Caregivers in Childhood and Adolescence (AFCCA).

Congratulations, Maude!

Funding Announcement

Researchers including David Nicholas (FER Course Winter 2023)

at the University of Calgary have received a $2.5-million Social Sciences and Humanities Research Council (SSHRC) Partnership Grant grant to help neurodivergent individuals and their families find and access the supports they need.

What We're Excited About This Month 🌟

 🍂🍁 Gearing up for Fall!



We are gearing up for an exciting Fall! Acceptances for the Fall 2025 and Winter 2026 cohorts have gone out, and we are thrilled to welcome a new group of learners into the program. We look forward to supporting their journey in building skills and partnerships that strengthen family engagement in research.

🎒📚 If you're joining us in the FER Course this Fall or Winter, here's a few things we recommend to help you get ready:

• ⏰ Organize your time: Ensure that you've blocked off the course dates/times in your calendar and plan around your busy weeks.
• 🎯 Set goals: Ask yourself what you want to get out of the course (knowledge, skills, connections).
• ✏️ Complete the PORCCH modules: These are 5 online modules you can complete at your own pace. They teach basic knowledge about the research process, patient-oriented research, and ethics. Each module takes about 30 to 45 minutes.
• 🚀 Reach out if you have questions: We are here to help! Connect with fer@mcmaster.ca if you need any support in getting prepared to learn with us this year.

Community Opportunities

PxP 2025 Conference (For Patients, By Patients) 🌟

This free, virtual event aims to bring you a wealth of knowledge, skills and resources on patient engagement in health research.

Tuesday Sep 9, 9:00 AM until Saturday Sep 13, 12:45 AM MDT

Getting Involved in Health Research Reviews: A Course for the Public 🌟

Have you ever wondered how researchers make sense of all the available research on a topic to inform everyday health policy and practice? This process is called evidence synthesis. Your input as a patient, carer, or member of the public is key to making sure that evidence syntheses are relevant, done well, and useful for the public.



This introductory course provides the public with foundational knowledge and skills in health research reviews (known as evidence synthesis) and meaningful patient and public involvement in these reviews.

Join the steering committee of the Healing Children's Pain Together Priority Setting Partnership (PSP) focused on neurodevelopmental disabilities 🌟

Focus Group Study on Rare Disease Clinical Trials 🌟

A group of researchers at the University of Ottawa are conducting a focus group study to understand the experiences of children/youth with rare diseases and their caregivers concerning clinical trials [Clinical trials are research studies that evaluate treatments to assess whether these treatments work and are safe].

Participate: Disability Rights Study in Canada 🌟

Join: Advisory Council 🌟

A group of researchers at the University of Manitoba are looking to establish a virtual Caregiver Advisory Council and a Knowledge User Advisory Council for a study which aims to identify caregivers’ pressing support needs and research priorities. They are looking for:

1. Parents or primary caregivers of a child (any age) with a diagnosed NDD from an underserved group (e.g., racialized, immigrant, have a disability, live in rural area), and
2. Stakeholders from community organizations (e.g., directors, managers, service providers) residing in Canada.

Ethics approval received from the Research Ethics Board (Fort Garry campus) at the University of Manitoba. Questions/concerns? Contact michelle.kee@umanitoba.ca or miriam.gonzalez@umanitoba.ca

Now Hiring: Postdoctoral Fellow in Pediatric Pain and Rehabilitation, Anaesthesia

Drs Jillian Vinall Miller (Associate Professor in Anesthesia, UCalgary), Nivez Rasic (Clinical Associate Professor in Anesthesia, UCalgary) and Elizabeth Condliffe (Assistant Professor of Pediatric Rehabilitation Medicine, UCalgary) (FER Course Winter 2023) are seeking a clinical researcher for a 2-year, full-time Postdoctoral Research Fellowship.

Resources and Learning Opportunities

Resource

Engaging People with Lived/Living Experience in Implementation Science

Office of Spread and Scale. Women's College Hospital Institute for Health System Solutions and Virtual Care. Women’s College Academics.

Resource 🌟

How to Read a Scientific Paper

Authors: Co-Created by Dawn Richards and Jim Kempster, with input from CIHR-IMHA PERA members; graphics by Tianna Magel. PxP Hub. Published June 5, 2025.

Webinar 🌟

Citizen Science: An Approach to Engage the Public and Co-Develop Research Questions

Dr. Codie Primeau: Citizen Science – Dr. Codie Primeau, Postdoctoral Fellow at Arthritis Research Canada and the University of British Columbia. KT Program (YouTube video). YouTube.

Are You on BlueSky? We are too! Let's Connect

Have questions or content to share in the next FER Newsletter?

Email us at fer@mcmaster.ca