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Happy April everyone!
As a Lived Experience Partner, You Don’t Need a PhD to Be Seen.
In community-partnered research spaces, we often hear a similar question: “What should I study if I want to be more involved?”
This question is rooted in genuine curiosity—and sometimes, in a quiet worry. A worry that lived experience alone won’t be enough. That being taken seriously in the research world requires formal credentials, academic degrees, or letters behind your name.
Let’s be clear: pursuing academic study can be a powerful and rewarding path, and if that’s your goal, it’s absolutely worth exploring. But it’s not the only path—and it’s not a requirement to show up, speak up, and shape research that matters.
Lived experience is a valid and essential form of expertise. It brings insight that no textbook can teach. When people with lived experience are involved in research not just as participants, but as co-creators, advisors, and leaders, the work becomes more grounded, more ethical, and more impactful.
So if you’ve ever felt like you need permission to take up space in the research world, this is it. You belong. Your experience matters. And the table isn’t complete without you.
Need some help building your community? Connect with me!
Warmest regards,
Rae Martens
Knowledge Broker
Research Engagement Strategist
| Request a Chat With Our Knowledge Broker Rae Martens | | |
Looking for Lived Experience Opportunities in this Newsletter?
Look for the "🌟" to find highlighted opportunities.
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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.
| | FER Community Opportunities | | Next FER Knowledge Exchange: Navigating Conflict with Care: Building Stronger Patient Engagement Teams in Research 🌟 | | Conflict is a natural part of teamwork—but in family engagement in research, how we navigate it matters. Join us for a compassionate conversation on resolving conflicts in family engagement teams, fostering trust, and strengthening collaboration. | | |
Now Accepting Workshop and Webinar Abstracts for the 2025 FER Knowledge Exchange Community of Practice Schedule 🌟
Patient and Family Partners Can Submit Too!
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🌟 Calling all graduates of the FER Course and FER Leadership Academy! 🌟
The FER Knowledge Exchange Community of Practice is seeking abstracts for upcoming webinars and workshops on family engagement. Share your insights, innovative practices, and lived experiences to help foster meaningful conversations and learning.
📢 Who can submit?
- Graduates and Instructors from the FER Training Program (FER Course)
📅 A few example topics include:
- Collaborative research strategies
- Engaging diverse voices
- Best practices in family engagement
Let’s work together to advance family engagement and create impact! Submit your abstract today by clicking the button below.
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🌟Have an Engagement Challenge You're Working Through? Seeking To Design Something New?
Book a free consult with Rae Martens our Knowledge Broker.
Where possible, Rae provides support for partnership matchmaking, research collaborations, and knowledge mobilization planning. For support consider booking a consult by emailing Rae at martensr@mcmaster.ca
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Did you know that the Family Engagement Program has a blog on engagement? You can read and subscribe here.
The team is currently seeking researchers and partners who may wish to share their experiences, or best practices.
This is an opportunity for us to learn from you!
Submissions can be sent to Rae at martensr@mcmaster.ca
(1000 words maximum. Themes can vary.) 🌟
| | | FER Team and Grads at the Empowering Kids Ontario Symposium 🌟 | | Dr. Maude Champagne was the Breakfast Keynote speaker on April 17 at the upcoming EKO Spring Symposium 2025 in Toronto, Ontario. Drawing from her research, clinical practice, and personal journey, Dr. Champagne emphasizes the need for trauma-informed care, caregiver well-being, and supportive communities in raising children with neurodevelopmental disabilities. Also in attendance was FER grad Tracey Moisan, and FER team members and instructors Sara Pott, Sam Noyek and Sam Micsinszki. | | | Congratulations to FER Grad Suzanne Deliscar! 🌟 | | Have a milestone that you're celebrating? Let us know! Email Rae Martens at martensr@mcmaster.ca | | Have questions about whether the FER Leadership Academy is the right next step for you? Consider emailing Rae with your questions. For more information, check out this link. | | If you need any support in signing up for any events or opportunities, please feel free to connect with Rae anytime for support! (martensr@mcmaster.ca) | | Pre-announcement: Recruitment for Canadian Institutes of Health Research (CIHR) IHDCYH's Youth Advisory Council coming soon! 🌟 | | |
Applications will open April 24 to join our Youth Advisory Council (YAC). Applicants may be between 12-25 years old and live anywhere in Canada. Council members are invited to serve a two-year term, meeting regularly and committing about 3-5 hours per month, bringing a youth perspective and their lived experience and interests in health, well-being, and health research to Institute and council projects and priority-setting. Read more about the council, including summaries of recent activities, and find the application link on the council website starting April 24.
We encourage applications from youth including those in Atlantic Canada or Northern Canada; youth not in employment, education, or training; young parents; and youth from First Nations, Inuit, or Métis communities. Help bring new perspectives to our YAC! The application deadline will be May 12, 2025.
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Researchers at McMaster University are looking for disabled children (8-12 years), youth (13-21) years, siblings of disabled individuals (0-21 years), and parents of disabled individuals (0-21) years to participate in a research study involving interviews. They want your help to understand how often excluded disabled children, youth, siblings, families, and researchers engage in childhood disability research partnerships.
Youth, siblings, parents: if you are part of often-excluded group (e.g., fathers, people who are racialized, 2SLGBTQ+, low literacy, does not speak English, experience mental health challenges) and have experience engaging as a partner in research, contact minuka@mcmaster.ca to learn more!
| | Apply to become a member of a Canadian Institutes of Health Research (CIHR) Institute Advisory Board 🌟 | | Join one of CIHR's Institute Advisory Boards and help shape the future of health research in Canada! Seeking individuals with experience in research, policy-making, community engagement, and more! Apply by April 25, 2025. | | Join the BHI Governance Committees! 🌟 | | The BHI is currently recruiting new members for several governance committees. The BHI has a robust governance structure that ensures accountability for CFREF funding and that the initiative is guided by a wide range of diverse perspectives and expertise. Committee members who are patient partners will be offered compensation based on BHI's compensation guidelines. | | Resources and Learning Opportunities 🌟 | |
Canadian Caregiving Summit 2025 🌟
November 3-4, 2025
| | A brighter future of care is possible. Following the release of A National Caregiving Strategy for Canada, the Canadian Caregiving Summit, hosted by the Azrieli Foundation’s Canadian Centre for Caregiving Excellence, will mobilize caregivers, care providers, systems leaders, policy makers and researchers across the aging, disability and healthcare communities to work together to make caregiving a national priority. It’s time to Act on Care. | | |
Shared Voices, Shared Results: Community-Engaged Methods in Health Equity Research 🌟
Wednesday, April 30th from 12:00-1:00pm ET
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Learning objectives:
1) Describe the continuum of community engagement in research and identify key equity indicators and contextual factors that influence community-researcher partnerships.
2) Apply practical strategies for engaging community stakeholders, including stakeholder mapping techniques, co-design methodologies, and approaches for building rapport with community organizations.
3) Articulate the essential components of successful community-engaged research, including terminology considerations, shared leadership structures, and strategies for ensuring sustainability.
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WHO Launches Global Research Agenda on Knowledge Translation and Evidence-informed Policy-making 🌟
May 15, 7:00am EST
| | Join the World Health Organization (WHO)’s Research for Health Department to officially launch the Global Research Agenda on Knowledge Translation and Evidence-informed Policy-making on Thursday, 15 May 2025. This virtual event will celebrate two years of collaborative efforts between WHO and a diverse group of 130 experts from civil society, academia, government institutions, United Nations agencies, and other international organizations, representing over 40 countries across all WHO regions. | 2025 Implementation Science webinar series from CHILD-BRIGHT: Implementing Together 🌟 | | |
Since 2022, CHILD-BRIGHT has been focused on moving evidence into action through implementation science, the study how an intervention will interact with “real-world” settings. Our 12 research project teams are working to better understand how evidence generated in Phase 1 of the network can be applied in routine practice to improve quality and effectiveness of health services for children and youth with brain-based developmental disabilities and their families.
In our 2025 webinar series, Implementing Together, CHILD-BRIGHT’s graduate trainees, postdoctoral fellows, and early career researchers will serve as guides to the implementation science projects and tools that are being used across the network.
Join us as we learn together about how implementation science can be used to support real-world impact as we work to create brighter futures for children and youth with brain-based developmental disabilities and their families.
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Canadian Rare Disease Innovation Showcase 🌟
Monday, April 28
4:00 PM - 8:30 PM MST
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Join us for the Rare Disease Innovation Showcase, a dynamic event highlighting innovations in rare disease care and research happening in Canada. This showcase is a unique opportunity for everyone in the rare disease community - patients, families, researchers, healthcare professionals, and partners, to learn about solutions that improve the lives of those affected by rare diseases. Don’t miss this opportunity to connect, learn, and engage with leaders in the field driving change and awareness.
The event will be available both in-person at the Westin Hotel in downtown Calgary (4:00–8:15 PM) and virtually (4:30–8:15 PM). In-person participants will be able to enjoy light refreshments and appetizers and also have the chance to network beyond 8:15 PM.
| | Reimagining Rare: Optimizing the Patient Journey from Diagnosis to Treatment 🌟 | | |
Reimagining Rare: Optimizing the Patient Journey from Diagnosis to Treatment
With $1.5 billion in new funding to improve access to rare disease drugs, the opportunity—and responsibility—is greater than ever. Join patients, healthcare leaders, industry, and policymakers at the Rare Disease Day Conference 2025 as we work together to ensure these investments deliver real impact for patients, health systems, and society.
| | Applying Principles of EDIA in Patient Engagement with Equity-Deserving Groups 🌟 | | |
You are invited to our hybrid event, "Applying Principles of Equity, Diversity, Inclusion, and Accessibility (EDIA) in Patient Engagement with Equity-Deserving Groups". This event will explore the key principles of EDIA and their critical application in engaging with equity-deserving groups in patient care.
The event will be held on May 5th from 3:00 pm to 4:00 pm ET at the Rooftop Café of the Patient Support Centre, where attendees will have the opportunity to listen to a panel discuss their valuable insights on this topic, moderated by Vina Mohabir. Panelists include Dr. Anna Hood, Dr. Samantha Louie-Poon, Lanre Tunji-Ajayi, M.S.M., and David Manly.
Following the session, there will be a networking reception from 4:00 pm to 4:45 pm ET, providing an excellent opportunity to connect with other attendees, panelists, and our moderator and continue the conversation in an informal setting.
This event will be available both in-person and virtually, allowing flexibility for all interested participants. Please make sure to RSVP by April 28th, 2025. We look forward to having you join us for this engaging and insightful event!
| | Growing your influence and a patient partner 🌟 | | |
Join us for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.
Date: May 12, 2025
Time: 12:00 PM PDT / 3:00 PM EDT / 7:00 PM UTC
Speakers: Dawn Barker, Trudy Flynn, Sue McKenzie, and Duncan Redburn.
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A Perfect Pairing: Engagement Science & Implementation Science 🌟
April 24, 12pm EST
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Join us for a Kids Brain Health Network's Implementation Community session: "A Perfect Pairing: Engagement Science & Implementation Science”
Engagement science and implementation science share common goals—bridging research and practice to create meaningful change. But how do they intersect, and how can we leverage their synergy for greater impact?
Join our expert panel as we explore engagement strategies in implementation initiatives and discuss ways to advance engagement efforts in implementation research and practice.
Thursday, April 24
12:00 - 1:30 PM ET
Zoom (details upon registration)
Panelists:
Dr. Andrea Cross – Implementation science & engagement researcher
Ms. Sara Pot – parent, knowledge broker, & engagement facilitator
Dr. Sarah Munce – Implementation science & engagement researcher
Ms. Rachel Martens – Knowledge broker & community engagement leader
What to Expect:
Discuss the synergy between engagement & implementation science
Explore engagement strategies in child health & development implementation initiatives
Identify next steps to strengthen engagement in implementation science
Pre-session readings: https://implementationsciencecomms.biomedcentral.com/articles/10.1186/s43058-024-00617-5
https://implementationscience.biomedcentral.com/articles/10.1186/s13012-024-01352-0
| | Publications and Resources About Family Engagement | Wow! How? Patient-Led Research Scorecards 🌟 | |
This is a resource to evaluate research partnerships between patients and professionals: a set of scorecards that focus on five areas:
- Patient/Partner Governance
- Integration into Research Process
- Patient Burden
- Research Organization Readiness
- Patient Group Readiness
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Providing input on a research team’s draft manuscript: Why this is important and some guidance 🌟 | | Academic publishing is one important way for research teams to share their research results. If you’re on a research team as a patient partner providing your lived experience, you might be asked to review a manuscript before it’s submitted to a journal to be considered for publication. | |
Importance of Family Involvement in Research Dissemination 🌟 | | |
Authors: Ahlam Zidan, Kelsey A. Seguin, Soraya Pacheco da Costa, Jill Heathcock
This tool highlights key strategies for involving families in research dissemination, from digital storytelling and policy discussions to feedback loops and advocacy partnerships.
Family involvement helps ensure that research is relevant, accessible, and impactful. It leads to better communication, stronger partnerships, and real-world change.
Check out the infographic below to explore actionable ideas for researchers and institutions aiming to strengthen family engagement.
| | Knowledge Broker to Improve Pain in Children and Families, Anaesthesia | | The Department of Anaesthesia in the Cumming School of Medicine invites applications for a Knowledge Broker to Improve Pain in Children and Families. This Full-time Fixed Term position is for approximately 12 months (based on length of grant funding), with the possibility of extension. | | |
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