At patient-oriented conferences, connections prevail

By Sunny Yimeng Dong, CHILD-BRIGHT Multimedia Communications Specialist 

Ping! Another email. 
Ping! Another virtual meeting. 
Ping! Another day. 

If you’re in the patient-oriented research (POR) space, chances are your work is virtual. Isn’t it a miracle? Thanks to video calls, virtual whiteboards, and emails, collaborations between researchers and people with lived/living experience (PWLE) can happen every day.  

Take CHILD-BRIGHT's National Youth Advocacy Council (NYAC): Our youth partners offer virtual consultations with researchers from across Canada. These consultations have shaped various research and policy projects, including a recent youth engagement guide for mental health policymaking, and led to a recent partnership with Kids Brain Health Network.

After five years of virtual collaborations as a POR researcher, PWLE, and multimedia science communicator, I found myself wondering: How can we deepen the connections we form through screens?  

This past spring, I had the opportunity to find out. Three patient-oriented conferences across Canada allowed me to connect with virtual collaborators in person. Each destination offered its own revelations, reminding me why we do this work: 

First stop: Calgary, Alberta

Watch Beyond the Checkbox: Operationalizing Health Equity in Research Design

Tinu Akinwande (left) and Samadhi Mora Severino presented on health equity in research design on behalf of CHILD-BRIGHT’s Equity, Diversity, Inclusion, Decolonization, and Indigenization Program.  

View the NYAC poster

CHILD-BRIGHT researcher Linda Nguyen (below, on left) and two youth research partners – Keenan Brignall (middle) and Shafniya Kanagaratnam – co-presented a poster on consulting with the CHILD-BRIGHT National Youth Advocacy Council (NYAC). It won “Best General Poster”, a testament to a successful collaboration. After the conference, Brignall reflected: 

““It was a fun learning experience… Seeing my work on the wall and talking about it was cool. I’d do it again.” ”

— Keenan Brignall, National Youth Advocacy Council member

Did you know? 

• The winning NYAC poster offers a behind-the-scenes look at how youth shape CHILD-BRIGHT projects. 

• Linda was my co-supervisor for the CHILD-BRIGHT–funded youth engagement in research project from 2021–2023. I truly admire her consistent dedication to POR! 

Second stop: Montréal, Quebec  

I then flew to Montréal to attend POPCORN's conference on May 22 and 23. Like CHILD-BRIGHT, POPCORN connects researchers and PWLE partners across Canada – but acts as a “network of networks” with a focus on pediatric pandemic preparedness, using COVID-19 as the proof of concept. 

Consult our compensation guidelines

The conference was also an opportunity to share insights gleaned from CHILD-BRIGHT’s Phase 1 with a newer network (POPCORN was founded in 2022). For example, POPCORN researchers asked if PWLE engagement compensation guidelines existed, which gave me a chance to share CHILD-BRIGHT’s sixth version of the compensation guidelines. 

Beyond information exchange, I (left) had the opportunity to share my story about mental health struggles as a neurodivergent youth, and how contributing to POPCORN’s Indirect Consequences Study was part of my healing, in a “live podcast” with patient engagement coordinator Carla Southward. Expressing my lived experience to a room of clinicians and researchers was nerve-wracking, but I’m glad I did it. And it seemed to resonate, too:  

“Of all the presenters today, I felt the most connected with you,” an infectious disease pediatrician told me. “Vulnerability brings humanity to the data.” 

Did you know? 

• The Indirect Consequences Study found that as COVID-19 policies became stricter, youth mental health hospitalizations increased across Canada. As a neurodivergent youth, I wonder: how many of those were related to neurodevelopmental conditions? 

• CHILD-BRIGHT Engagement Council members Suzanne Deliscar and Becky Conia are also members of POPCORN. Small world! 
  
  

Final stop: Toronto, Ontario 

Back in Toronto, I attended POND Network's Family Day on May 31. This community event brought together families navigating autism spectrum disorder (ASD), ADHD, and rare genetic neurodevelopmental conditions – to share stories and learn from scientists.  

WATCh youth digital stories

POND youth leader Noah Barnett (left) and I presented a CHILD-BRIGHT–supported Perspectives of Mental Health project, in which nine youth created digital stories about their positive and negative interactions with clinicians when discussing mental health. My role was designing the infographic below and supporting the final stages of a clinician toolkit. 

View fullsize

Similar themes surfaced in panel discussions with CHILD-BRIGHT VR-EF Principal Investigator Jennifer Crosbie and family members on mental health, loneliness, and screen time. One message stood out from the group: 

““For some neurodivergent youth, connection is the treatment to depression.””

Did you know? 

All the families who attended were POND study participants! Among many studies, POND researchers have genome-sequenced ~4,000 Canadian families, which helped identify 134 autism-related genes.  Being in a room full of dedicated families made me emotional and reminded me why engaging them in research is so important.

Marrying virtual collaboration with in-person connection: A winning approach?

Virtual collaboration has made it possible for a pan-Canadian network like CHILD-BRIGHT to thrive. But there’s something uniquely powerful about sharing space, stories, and moments in person – experiences that can reignite our purpose and strengthen our connections. 

From Keenan beaming with joy as he saw his work on display, to POND families bravely opening up about their journeys, every encounter reminded me why patient-oriented research matters and why we keep pushing the boundaries in brain-based developmental disability research. 

If you've felt that spark too, we hope to see you in Toronto on February 2 and 3, 2026, when the CHILD-BRIGHT Network gathers again. 

Let’s stay connected. 

How CHILD-BRIGHT youth are promoting meaningful engagement in mental health policymaking

Youth with neurodevelopmental disabilities experience higher rates of mental health challenges and face greater barriers to accessing care. Yet, past studies indicate that their voices are rarely heard in mental health policymaking. 

Youth and policymakers hoping to address these challenges may wonder: 

• How can youth safely share lived and living experience in policymaking? 

• What invisible power dynamics shape whose voices are heard? 

• What does meaningful engagement look like? 

These are just some of the questions explored in the Youth Engagement Guide for Mental Health Policymaking – a resource for youth and policymakers. 

CHILD-BRIGHT members team up to co-create the guide 

Sakiko Yamaguchi, postdoctoral fellow, and Shafniya Kanagaratnam, youth research partner, first connected through the CHILD-BRIGHT-funded CEE YOU! Project. 

In 2024, they teamed up to co-facilitate workshops exploring a key question: How can youth meaningfully engage in mental health policymaking? 

They engaged 45 youth from across Canada, including six members from our National Youth Advocacy Council (NYAC).   

“Through our CEE YOU! project, we learned some valuable tips for creating a more youth-friendly environment. We started with icebreaker questions and interactive activities, and made sure there were multiple ways for youth to engage – including anonymous options,” said Yamaguchi. 

“Shafniya and I shared some initial ideas for designing the workshops, but as we got started, youth expressed interest in helping with the planning too. So, we opened up that opportunity. It became a truly evolving and collaborative process.” 

Curious to learn more?

Sakiko and Shafniya sat down with us to reflect on their co-creation process: 

Announcing the recipients of the 2025 Frank Gavin Patient Engagement Awards

We are pleased to announce the recipients of the 2025 Frank Gavin Patient Engagement Leadership Awards, established in honour of CHILD-BRIGHT's first Director of the Engagement Program.   

This year, we are thrilled to recognize two partners with lived and living experience (PWLEs) for their leadership in engagement in research related to brain-based developmental disabilities in children and youth:  

• Gunjan Seth 

• Henry Stewart 

Learn more about them: 

Parent research partner recipient: Gunjan Seth

Gunjan Seth has been involved with CHILD-BRIGHT's Engagement Council since 2022 and is also a member of the Training & Capacity Building team, the Knowledge Mobilization Family Hub, and the CHILD-BRIGHT VR-EF research project. She is actively engaged with multiple institutions and organizations, including ECHO Autism Ontario, Autism Speaks Autism Care Network, IMPaCT Trials, and Ontario Health. 

In addition to Gunjan readily sharing her own experiences as a parent of a child with autism and attention deficit and hyperactivity disorder in order to steer innovation and action, she advocates for all families who are navigating similar complex journeys. She is a passionate advocate for equity, diversity, and the meaningful inclusion of patients in their own care. She is the co-author of a chapter titled “The Power of Compassion and Gratitude” in the book Coaching for Person-Centred Healthcare: A Solution-Focused Approach to Collaborative Care. 

The CHILD-BRIGHT Network is pleased to recognize her dedication to health care outcomes for families and championing equity, diversity, and inclusion.

Youth research partner recipient: Henry Stewart

A Grade 12 student, Henry Stewart has already made important contributions to patient-oriented research despite his young age! Henry’s commitment to amplifying youth voices in health care decisions is clear: he is a member of the CIHR-IDHCYH’s Youth Advisory Council, as well as a long-standing youth advisory council member and youth panelist for the Sport Injury Prevention Research Centre at the University of Calgary; a co-chair of the Alberta Children’s Hospital Youth Council; and co-chair of the Child and Youth Advisory Council.  

Henry has championed a patient-centered approach to engagement in research at the Pediatric Onset of Neuromotor Impairments (PONI) lab. He has also volunteered with the AHS Teens Talk Transition program, supporting other youths in transitioning from pediatric to adult health care.  

The CHILD-BRIGHT Network is proud to recognize Henry’s leadership as a youth research partner.

Gunjan will receive a registration and travel allowance of up to $800 for a conference of her choice in Canada or the United States.  As the youth recipient, Henry will receive up to $800 to either attend a patient-oriented research training event, or to support a patient-oriented research project of his choice. 

Congratulations, Gunjan and Henry, and thank you to all who took the time to submit nominations and applications for consideration. It is heartening to see the strength and breadth of leadership in engagement across the patient-oriented research community.

SAVE THE DATES! 2026 CHILD-BRIGHT Conference

Get out your calendars! The upcoming 2026 CHILD-BRIGHT Conference will be held on February 2 and 3, 2026 in beautiful Toronto, Canada.

Join us as we celebrate our successes, broker new connections, and look to the future of implementation and knowledge mobilization in Canadian child disability research.

What to expect

The 2026 CHILD-BRIGHT conference will offer a unique opportunity to:

• Celebrate, and learn from, CHILD-BRIGHT's implementation science and knowledge mobilization activities from 2022-2026,

• Come together to collectively move brain-based disability research forward,

• Get to know the movers and shakers, emerging stars, and trailblazers of our patient-oriented research community,

• And more!

We are excited to see you in Toronto! In the meantime, stay tuned in the coming weeks and months for registration and programming details.

How to do patient-oriented research with kids & youth: CHILD-BRIGHT researchers explain

In 2024, CHILD-BRIGHT members were invited to write a review article about how to conduct patient-oriented research (POR) with children and youth for a special issue of the journal, Children. The goal of the article was to provide researchers with comprehensive guidance on conducting POR, including those who may be new to conducting POR with children and youth and their families.

For the review article, our then-Research Program Manager Alan Cooper teamed up with co-authors Linda Nguyen, Lola Irelewuyi, and Steven Miller, and collaborated with parent research partners Carrie Costello, Fabiana Bachini, and Laesa Kim. Here’s what Alan had to say about the process of writing the article:

What were we trying to accomplish?

Before writing the article, we noted that there were many frameworks and high-level guidelines on how to engage partners with lived and living experience (PWLEs), such as youth or parent research partners, in pediatric research. These materials are very useful in guiding researchers on how to conduct POR. However, these resources usually don’t speak to the depth of work required to successfully conduct POR in pediatric populations—children, youth, and families.

What did we find in our literature search?

In our literature search, we found that engagement in certain research stages and activities, like research prioritization, data analysis and interpretation, are well described in the literature. Engagement in other research stages and activities, like data collection, or understanding benefits to PWLEs, are not clearly reported. We also noted that the literature about doing POR with adult research participants appears to be more advanced than the pediatric POR literature. CHILD-BRIGHT is addressing these areas for growth as our Phase 1 research projects continue to publish their findings.

Where we could not find literature on a topic, CHILD-BRIGHT PWLEs shared their experiences and described the impacts that they have on research. For example, CHILD-BRIGHT PWLE Fabiana Bacchini is also Executive Director of the Canadian Premature Babies Foundation. She described the broad reach of PWLE-led knowledge mobilization activities, like writing blog posts, producing infographics, and creating social media campaigns, to share research findings at the CPBF.  These efforts led to over 76,000 views on YouTube in 2023 with an audience in 150 countries. Meanwhile, the infographics that PWLEs developed with the research team are distributed in neonatal clinics across Canada.

We also looked into the different ways POR can be evaluated and measured at a project level. CHILD-BRIGHT has led the way on both qualitative (e.g. interviews) and quantitative (e.g. surveys) evaluations of POR. CHILD-BRIGHT Parent Liaison and PWLE Carrie Costello shared that the challenges of engagement are underreported in the field, particularly if the evaluation is unstructured. Regular evaluations and check-ins between researchers and PWLEs can help identify challenges and lead to solutions.

What did we learn about doing patient-oriented research with kids, youth, and families?

What became clear to us is that authentic and meaningful POR is facilitated by researchers and PWLEs taking time to build respectful relationships and clarifying roles at the beginning of the project, and revisiting roles throughout the projects, using tools such as the Involvement Matrix. These check-ins about expectations and roles ensure that there is clear communication among the whole team, including researchers and PWLEs, throughout the project.

Overall, we hope that this review is a comprehensive resource, especially to researchers new to POR, and that it complements the other pediatric POR articles in the special issue, which includes publications from the CHILD-BRIGHT Parent-EPIQ research project.