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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

Discover how peer support could revolutionize Canadian healthcare in this groundbreaking 5-part series from Matters of Engagement, in collaboration with the Canadian Cancer Society and the BETTER Women research team at Women's College Hospital. Follow the BETTER Women research project, where trained volunteers become peer health coaches, supporting women through six-month journeys toward better health outcomes. From the scientists reimagining primary care to the prevention practitioners on the front lines, and the peer coaches whose lived experiences are transforming lives - this series explores how community connection and upstream prevention could be integral to addressing Canada's healthcare crisis. Join hosts Jennifer Johannesen and Emily Nicholas Angl as they examine whether adding peer health coaching to traditional healthcare leads to better chronic disease prevention through sustained behaviour change. Could this paradigm shift be part of building a healthier future for all Canadians? Episodes exploring prevention, peer support, and the power of community - coming soon.

This REPLAY! episode first aired December, 2021.  New introduction by Emily Nicholas Angl, followed by a full replay of the episode. Also, we've added some publications to the show notes (scroll down) related to this episode. Discussing Failures in Participatory Research, with Lori Ross We initially invited Lori Ross on the podcast to discuss the PEERS  (Peers Examining Experiences in Research) Study – a 2 yr federally funded research project looking at the experiences of peer researchers with lived experience in communities that face structural oppression in Canada, including mental health service users, people who use drugs, trans and non-binary communities, and racialized communities.  Not only was the project team studying peer researchers, but they employed peer researchers (as research assistants) as well.  In our conversation, we discussed this research project, the findings of which are still to be written up. However, the conversation also revealed that the research team was concurrently studying what they saw as failures in the study while they were conducting the research, and that they plan to write up those reflections as well. We’re excited to bring you this conversation with Lori Ross, the principal investigator, who shares with us some of the ins and outs of studying a process while simultaneously doing the work… and some of the project team’s insights into why their participatory research project experienced failures.  Added to the experiential piece is their theoretical framing, which is sure to shed light on why participatory research conducted in the context of a large institution may indeed be “doomed to fail” when it comes to power sharing and other social justice aims. [download transcript] Guests: Lori Ross on twitter Lori Ross’ profile (Dalla Lana School of Public Health at the University of Toronto) Mentioned in this episode: PEERS study web page Added 2025: Ross, L. E., Pilling, M., Voronka, J., Pitt, K. A., McLean, E., King, C., … Guta, A. (2023). ‘I will play this tokenistic game, I just want something useful for my community’: experiences of and resistance to harms of peer research. Critical Public Health, 33(5), 735–746. https://doi.org/10.1080/09581596.2023.2268822 Jijian Voronka, Carole King, Reflections on Peer Research: Powers, Pleasures, Pains, The British Journal of Social Work, Volume 53, Issue 3, April 2023, Pages 1692–1699, https://doi.org/10.1093/bjsw/bcad010 Ross, L. E., Pilling, M., Pitt, K.-A., & Voronka, J. (2024). Even with the best of intentions: An accounting of failures in a participatory research project. In C. Carter, C. T. Jones, & C. Janzen (Eds.), Contemporary vulnerabilities: Reflections on social justice methodologies (pp. 168–185). University of Alberta Press. https://www.tandfonline.com/doi/full/10.1080/09581596.2023.2268822#d1e402 Kinnon R MacKinnon, Adrian Guta, Jijian Voronka, Merrick Pilling, Charmaine C Williams, Carol Strike, Lori E Ross, The Political Economy of Peer Research: Mapping the Possibilities and Precarities of Paying People for Lived Experience, The British Journal of Social Work, Volume 51, Issue 3, April 2021, Pages 888–906, https://doi.org/10.1093/bjsw/bcaa241

This REPLAY! episode first aired November, 2022.  New introduction by Jennifer Johannesen, followed by a full replay of the episode. Vagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton Ninomiya This is a conversation we’ve been sitting with for many weeks, thinking hard about how to present it. We spoke to our guests with the idea we would simply talk about the paper they co-authored… and we did… but we also ventured into spaces we didn’t anticipate! Although they are not from the patient engagement world, Amy and Melody’s research and insights cast a different sort of light on engagement activities. Hosts Jennifer and Emily think through ideas of power, obfuscation, accountability, and whether we’re all just spinning our wheels…by design.  [download transcript] Mentioned in this episode: Vagueness, Power and Public Health: Use of ‘Vulnerable’ in Public Health Literature La Langue de Coton: How Neoliberal Language Pulls the Wool over Faculty Governance Bringing stakeholders together for urban health equity: hallmarks of a compromised process

After more than a year of no new episodes, we're rebooting Matters of Engagement—literally from the cottage dock! Between cicada serenades and turtle sightings, we're announcing exciting new directions. Get ready for three fresh content streams: Research Collaborations supporting knowledge translation for health and healthcare research projects (with three already in the works!), our Replay Series where we'll revisit standout episodes from our archives, and a new video 'talk show' coming to YouTube this fall. We'll be kicking off the reboot with some carefully selected replays in the coming weeks. Subscribe to our podcast feed, follow us on YouTube, and stay tuned on social media for all the latest updates! We're excited for this next chapter, please join us! [Download transcript]

We're doing something a little bit different! We're taking a shot at making video along with the podcast! You can watch this episode on our YouTube channel, or as always, you can listen in your favorite podcast app. This episode has two parts. We're first going to feature a short talk Jennifer gave at the Canadian Caregiving Summit in Ottawa a few weeks ago, which was specifically focused on her experiences as an extreme caregiver, trying to earn a living. After that short recording - which is about 10 minutes - tune in to Jennifer and Emily's conversation about advocacy, policy, and choice. In this episode: 00:00 What to expect in this episode 01:20 Jennifer's experience as an extreme caregiver 02:20 Right to flourish, caregiving through a bioethics lens 03:34 Caregiving and choice 04:38 Disability is seen as a personal or family tragedy 05:18 Accessing and managing support can be burdensome 06:09 Extreme caregiving has an opportunity cost 06:51 Financial precarity and gender 08:09 What does society prefer to support? 08:50 Caregiving as unpaid labour keeps caregivers in financial dependency 10:01 Policy considerations and conclusion of talk 11:11 Jennifer and Emily have a candid discussion! 15:18 Advocacy vs. organizational agendas 16:59 Caregiving can be fulfilling and also has a cost. Extreme caregiving is rarely a choice 18:47 How do we differentiate between regular parenting/caregiving and 'extreme' caregiving? 27:06 The amount of work that goes into managing and administering everything that goes along with extreme caregiving 29:04 Putting some choice back into challenging circumstances 35:35 Moral arguments for policy makers 36:53 Caregiving policies potentially impact everyone 40:29 Navigating care responsibilities as a family or partnership 44:53 "Performing" for therapists 46:39 Shared decision-making and patient/family priorities 49:18 Jen and Emily reflect on how little they've talked about Jennifer's experiences with Owen 51:14 Jen and Emily acknowledge that caregivers don't all have the same opportunities, experiences, or perceptions [download transcript] Summit links: Canadian Caregiving Summit Jennifer's session at the Summit Azrieli Foundation