Matters of Engagement

To wrap up the series, we turn to another group that's routinely excluded from research meant to serve them: young people.

VOICE — the Childhood Ethics Project — is co-led by a Youth Advocacy Council and university-based researchers. It started as a conventional academic collaboration and evolved into something more deliberate: a project that actively works to include youth not as subjects but as co-creators of knowledge. We talk with VOICE co-investigator and Canadian Journal of Public Health senior editor Mary Ellen Macdonald, Youth Advocacy Council chair and childhood ethics researcher Nika Rovensky, and recent McGill graduate and youth advocacy council leader Ryan Kent about the systemic barriers youth face when trying to contribute to research, what meaningful inclusion looks like in practice, and how a single rejected manuscript sparked a new editorial policy at a major public health journal. Conversation facilitated by Candice Barrans, who joins us again from the Siden Research Team.

[download transcript]

Health Canada Study (referenced in the episode):

• Video created by Nika & Ryan: Engaging Young People in End-of-Life Care
• Campbell, S., N. Rovensky, R. Kent, L. Delaney, F. A. Carnevale, and M. E. Macdonald. 2026. “Listening to Young People on Childhood Death: A Youth-Focused Participatory Approach to Children's Palliative and End-of-Life Research and Policymaking.” Children & Society1–10. https://doi.org/10.1111/chso.70066.

Links:

• VOICE The Childhood Ethics Project
• Siden Research Team
• BC Children's Hospital Research Institute

Being a parent or patient partner can mean a lot of things. In this episode, we go inside the Siden Research Team to find out what it actually looks like when partnership is done differently. 

Candice Barrans joined the Siden Research Team as a parent partner after her son was diagnosed with Down syndrome. She came with questions about how parent partnership works, and ended up doing research about it. With research coordinator Anne-Mette Hermansen and student research assistant Gabriel Zamma, we explore what embedded partnership means in practice, what happens when a parent brings a perspective no one else on the team has, and what it means to be recognized not just as a patient's parent, but as a whole person.

[download transcript]

Links:

• Siden Research Team
• BC Children's Hospital Research Institute

When patients and families help design and conduct research, what evidence can we find of their contributions? The Siden Research Team at BC Children's Hospital Research Institute set out to answer what seemed like a simple question, and hit a wall. Studies involving patient and parent partners were difficult to find systematically, and even when found, contributions were rarely acknowledged or poorly described. In this episode, we talk with research librarian Colleen Pawliuk, research coordinator Anne-Mette Hermansen, and student research assistant Gabriel Zamma about what they discovered when they launched a rapid scoping review to map how patient partners are, and are not, recognized in pediatric health research.

[download transcript]

Links:

• Siden Research Team
• BC Children's Hospital Research Institute

Sangeeta Chopra-Charron came to Ontario Health's Patient and Family Advisory Council (PFAC) with a background in transformational change and a genuine belief that Ontario Health was sincere about partnering with patients and families in system transformation. Four years later, she resigned from the co-Chair role, publicly, with a letter that resonated across the health care sector.

Emily sat down with Sangeeta to talk about what she found, what she tried, and why she eventually concluded the council was implemented more for optics than for impact. It seems Ontario Health had built its PFAC around the language of patient-centred design and genuine partnership, and had provided just enough structure to signal commitment... without the governance, accountability, or shared decision-making to back it up.

Her experience isn't unique to Ontario Health. It's a pattern that shows up at every level of the health care system.

[download transcript]

Links:

• Sangeeta Chopra-Charron on LinkedIn
• Ontario Health
• Ontario Health Patient and Family Engagement

----------------------

We reference Sangeeta's resignation letter in this episode, here's the full reprint:

"November 14, 2025

Hello Matt,

I am writing to resign as Co-Chair and member of the CEO Patient and Family Advisory Council (PFAC), effective December 31, 2025. By providing this notice well in advance, I hope to support a smooth transition and allow time to identify a suitable successor.

This decision follows careful reflection on PFAC’s purpose and its alignment with Ontario Health’s mandate to deliver connected, patient/person-centred care. It has been a privilege to serve alongside individuals dedicated to improving patient and family experiences. As both a patient and caregiver, I have been committed to advancing genuine partnership in care and contributing my professional expertise in transformational change.

However, it has become clear that the current PFAC structure does not support authentic collaboration. Despite consistent advocacy for shared decision-making, the Council’s influence, even in basic areas such as agenda setting, remains limited. As a result, the CoChair role is largely symbolic, making it difficult to fulfil with integrity. Without meaningful structural and procedural change, PFACs risk functioning as token bodies rather than true drivers of improvement, a concern shared by many members.

My experiences within PFAC also reflect broader systemic challenges at Ontario Health. After six years, the system remains fragmented, with weak accountability, limited digital integration, and inconsistent performance reporting. These issues continue to undermine confidence in Ontario Health’s ability to deliver on its transformation mandate.

This is a difficult but necessary decision. I remain hopeful that Ontario Health will renew its commitment to transparency, accountability, and genuine patient partnership, not only in rhetoric, but in practice.

As I step back, I do so with the same conviction that first drew me to this work: meaningful change is both possible and necessary. I trust that you and your colleagues will confront the hard truths and take the steps needed to build a truly patient/person-centred, integrated, and outcome-driven system. Thank you for the opportunity to serve.

Thanks 
Sangeeta"

In this fifth and final episode of the BETTER Women series, Jennifer and Emily zoom out from the study itself to explore what the results actually mean — and why mixed findings are far from failure. Dr. Ruth Heisey reflects on what the project got right, why peer health coaching remains full of promise, and what the healthcare system stands to lose if prevention keeps taking a back seat. Implementation scientist Laura Desveaux then offers a reframe: effectiveness research tells us if something works, but implementation science tells us how to make it work in the real world — with real people, real constraints, and real complexity. Jennifer and Emily close the series by reflecting on what it means to produce a podcast in real time, as a research story unfolds.

[download transcript]

More episodes in this series:

• Trailer
• Episode 1: Going “Upstream” to Prevent Chronic Disease
• Episode 2: The Science behind Peer Health Support
• Episode 3: Voices from the Heart of the Project: Peer Health Coaches
• Episode 4: Learning From Unexpected Results: What the Numbers Didn’t Capture

Related research:

• Assessing the effectiveness of “BETTER Women”, a community-based, primary care-linked peer health coaching programme for chronic disease prevention: protocol for a pragmatic, wait-list controlled, type 1 hybrid effectiveness-implementation trial
• Improving chronic disease prevention and screening in primary care: results of the BETTER pragmatic cluster randomized controlled trial.
• Results from the BETTER WISE trial: a pragmatic cluster two arm parallel randomized controlled trial for primary prevention and screening in primary care during the COVID-19 pandemic

Links:

• The BETTER Women project
• Canadian Cancer Society
• Women's College Hospital

In this special collaboration with the Knowledge Mobilization Program at CHILD-BRIGHT, a pan-Canadian research network focused on children and youth with brain-based developmental disabilities, we hear directly from three young advocates who are shaping research from the inside. Kelsey Seguin, Sierra Lynn Vanderdeen, and Megan Blais-Hudson share their experiences as youth advisors and student researchers, discussing how they navigate representing their communities while drawing from personal experience. They reflect on the difference between having a voice and being truly heard, the challenges of advocating within research spaces, and how their perceived "inexperience" can actually be a strength in advocacy. This episode explores what it means for young people with lived experience to move beyond participation to genuine partnership in research that affects their lives.

[download transcript]

The BETTER Women research team gathered to review their findings, hoping to see clear evidence that peer health coaching improved women's preventative health behaviours. But the results told suggested a more complex story. While the quantitative data showed no statistically significant benefit from adding peer health coaches to the program, the qualitative interviews revealed a different picture: participants and coaches described meaningful relationships, increased confidence, and genuine support that simply weren't captured in the measured outcomes.

In this episode, we sit in on the research team's candid debrief as they work through disappointing numbers, examine what might have gone wrong, and discover valuable insights about the gap between what researchers measure and what participants actually value. From volunteer bias to pandemic pivots to goals that don't fit neatly into outcome frameworks, this is an honest look at what happens when research doesn't go as planned—and why mixed or disappointing results are just as important as clear successes.

[download transcript]

More episodes in this series:

• Trailer
• Episode 1: Going “Upstream” to Prevent Chronic Disease
• Episode 2: The Science behind Peer Health Support
• Episode 3: Voices from the Heart of the Project: Peer Health Coaches

Related research:

• Assessing the effectiveness of “BETTER Women”, a community-based, primary care-linked peer health coaching programme for chronic disease prevention: protocol for a pragmatic, wait-list controlled, type 1 hybrid effectiveness-implementation trial
• Improving chronic disease prevention and screening in primary care: results of the BETTER pragmatic cluster randomized controlled trial.
• Results from the BETTER WISE trial: a pragmatic cluster two arm parallel randomized controlled trial for primary prevention and screening in primary care during the COVID-19 pandemic

Links:

• The BETTER Women project
• Canadian Cancer Society
• Women's College Hospital

Meet the peer health coaches - the volunteers at the heart of the BETTER Women project. Through candid conversations, we hear from women who underwent extensive training in motivational interviewing and health coaching to support others on their wellness journeys. From international physicians to cancer survivors to newcomers seeking community connection, these coaches share what drew them to the program, how the training changed their own relationships, and the profound impact of walking alongside someone through health behaviour change. This is healthcare powered by human connection.

[download transcript]

More episodes in this series:

• Trailer
• Episode 1: Going “Upstream” to Prevent Chronic Disease
• Episode 2: The Science behind Peer Health Support

Related research:

• Assessing the effectiveness of “BETTER Women”, a community-based, primary care-linked peer health coaching programme for chronic disease prevention: protocol for a pragmatic, wait-list controlled, type 1 hybrid effectiveness-implementation trial
• Improving chronic disease prevention and screening in primary care: results of the BETTER pragmatic cluster randomized controlled trial.
• Results from the BETTER WISE trial: a pragmatic cluster two arm parallel randomized controlled trial for primary prevention and screening in primary care during the COVID-19 pandemic

Links:

• The BETTER Women project
• Canadian Cancer Society
• Women's College Hospital

How do you design a study to test whether peer support actually works? In this episode, we dive into the nuts and bolts of the BETTER Women research project - a randomized controlled trial examining whether trained volunteer peer health coaches can help people stick with their health goals long-term. We explore the three study sites, learn about recruiting and training participants across different communities, and discover the complexity behind implementing prevention programs in real-world primary care settings. From data collection to community engagement, this is research designed to change how we think about healthcare.

[download transcript]

More episodes in this series:

• Trailer
• Episode 1: Going “Upstream” to Prevent Chronic Disease

Related research:

• Assessing the effectiveness of “BETTER Women”, a community-based, primary care-linked peer health coaching programme for chronic disease prevention: protocol for a pragmatic, wait-list controlled, type 1 hybrid effectiveness-implementation trial
• Improving chronic disease prevention and screening in primary care: results of the BETTER pragmatic cluster randomized controlled trial.
• Results from the BETTER WISE trial: a pragmatic cluster two arm parallel randomized controlled trial for primary prevention and screening in primary care during the COVID-19 pandemic

Links:

• The BETTER Women project
• Canadian Cancer Society
• Women's College Hospital

We know our Canadian healthcare system is overloaded, and that preventative care may help address the increasing pressures on chronic and emergency care services. But how best to support people to actually do what they need to do to improve or manage their own health?  In this series opener, we explore "upstream" healthcare through the BETTER Women research project - a collaboration between Women's College Hospital and the Canadian Cancer Society.

Discover how prevention practitioners, peer health coaches, and their patients are all working together to support lifestyle behaviour change that could prevent chronic diseases before they start. In this episode, we hear from family physicians, cancer prevention specialists, and researchers about why moving upstream is essential - and why it's so hard to achieve.

[download transcript]

Links:

• The BETTER Women project
  
• Canadian Cancer Society
  
• Women's College Hospital