Matters of Engagement

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 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]

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

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

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

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]

What exactly is the best way to engage patients in a healthcare research project? Well, it's hard to say definitively. Funders like CIHR often require patient involvement, but very little direction is provided beyond general frameworks and guiding principles. Often project teams just have to sort things out on their own. So we were curious to find out how this one particular healthcare research project handled it. The details of the project are not really what this episode is about. Instead, our intention is to showcase a number of different perspectives about the use of patient partners within a federally funded healthcare research project. You're going to hear from two of the project's researchers (PI Dr. Noah Ivers and Celia Laur), two patient partners (Barbara Sklar and Michael Strange) - they actually call themselves Lived Experience Advisors, or LEAs - and our very own Emily Nicholas Angl, who helped to bridge communication between the two groups. In this episode: 00:17 Why Jen is hosting solo01:06 About this research project02:05 What’s an ”innovative clinical trial”?04:00 Dr. Noah Ivers’ research objectives06:15 Why this project was complex09:34 Should patient partners do more technical work?10:42 What are we asking patients to do?13:20 Barbara: Engaging patients is like the Wild West!15:57 Michael: Sharing my experience may help someone18:03 Barbara: Engaged patients are like liaisons20:01 Patients should do what interests them21:28 Reflecting on constraints22:29 Barbara: Patient advisors should not be ”partners”24:41 Figuring things out as they go25:44 What did the Advisors actually do?30:34 Michael: Opioids are not inherently bad32:24 Barbara: I get a lot of benefit from being an LEA35:03 Reflections on Emily’s role, as Lead Advisor38:08 Who decides what’s relevant (re patient input)?39:05 Why research teams might want a Lead Advisor40:29 Are there areas where patient input is less relevant?43:01 Jennifer interviews Emily!01:07:35 Ending and credits About the research project: The project (the results of which are not yet published) and is an "innovative clinical trial", which means that it uses methods alternative to more traditional randomized controlled trials. The research had two streams, both related to primary care - one focused on prescribing opioids, and one on prescribing antibiotics. Both of these are areas where there can be serious impacts at the individual patient level, but also in terms of public health more broadly. And particularly with opioids,. defining exactly what appropriate prescribing looks like is really tricky. And primary care physicians aren't always aware of, or maybe just aren't following, the most recent evidence-based guidelines. So this project explored if and how some specific interventions could shift prescribing behavior towards established best practices. We will continue to update the links on our website as publications and further information becomes available. [download transcript] ------------------------------ Research project information: Project lay summary (PDF) Patient Partner Orientation presentation (PDF) Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Innovative Clinical Trials Initiative (iCT) Research background information and context: The Opioid Chapters: 11 stories that show how complex the crisis is Video: Improving antibiotic prescribing by reducing antibiotic use, duration of therapy and drug costs Webinar: Advancing Audit and Feedback Science and Antibiotic Stewardship in Primary Care Guest links: Dr. Noah Ivers profile Dr. Noah Ivers on twitter Celia Laur PhD profile Celia Laur on twitter Previous episodes featuring patient partner views: Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021 Policy Development in a Pandemic: is there a Role for Patient Partners? With Julie Drury and Christa Haanstra October 5, 2020 Reflections on Engagement, with Lorraine, Mau

A widely-held assumption is that all residents of Long-term Care (LTC) homes are frail, elderly and in need of sweeping protections as determined by government, policy-makers and LTC home management. The reality, however, is that residents of LTC homes comprise a diverse demographic and have a wide range of needs, interests and concerns. And across the spectrum of needs, residents have a strong desire to participate in key decision-making processes. Instead, they are often excluded. To help address the diversity of needs and interests, resident populations in each home are represented by provincially mandated Residents' Councils. Each home has a Council (made up of residents who are interested and capable of participating) that convenes regularly and is tasked with collecting the feedback of residents, which ultimately is supposed to inform LTC home policy and management. However, there are many potential barriers to these Councils performing effectively and meaningfully. This is where the Ontario Association of Residents' Councils (OARC) comes in. The OARC supports local Residents' Councils to communicate and perform with more impact, and also works to amplify the voices and interests of LTC residents at provincial policy-making tables. Two of our guests, Gale and Devora, each live in a Long-term Care home in Ontario and are vocal advocates for giving residents a more meaningful voice in the development and application of policies that affect them and their co-residents. Gale and Devora lead their own local Residents' Councils and are active members within the OARC. Our third guest, Dee Tripp, is the Executive Director of the OARC. In this episode, we discuss the realities of living in Long-term Care from residents' perspectives, and the impact of living with policies and restrictions they may not have had a say in making. We also talk about what needs to change in order for residents' voices to become better integrated into LTC policy-making. —————– This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Ontario Association of Residents' Councils OARC on twitter Previous episodes related to "lived experience as expertise" Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy – with Lucy Costa July 6, 2020 Dilemmas of Representation, with Paula Rowland June 29, 2020 Expertise Part 2, with Francine Buchanan June 16, 2020 Expertise Part 1, with Frank Gavin June 16, 2020

On September 22, 2022, the Public Engagement in Health Policy project team at McMaster University hosted a one-day conference, Reimagining public engagement in a changing world. Community members, engagement practitioners, researchers, and policymakers gathered virtually and in person to discuss the opportunities and pitfalls of public engagement and to envision a way forward. Attendees explored questions such as, what does it mean to engage with communities ethically? How can researchers use new approaches to engagement to tackle contemporary health policy issues with communities? And what are the roots of mistrust between communities and researchers/policymakers? The day opened with Dr. Jamila Michener, Associate Professor of Government and Public Policy at Cornell University. In her keynote presentation, she shared enriching insights on public engagement at the intersections of power, poverty, public policy and racism. Transformative and impactful public engagement continues to be hindered by a range of problems from insufficient resources to structural disincentives. Research must not only seek to avoid tokenism, to meaningfully create space for people to participate; it must also be reflexive. Researchers have a critical role in radically transforming engagement by understanding how their positionality affects their work. They should begin their work by asking: who am I, what are my values, what is my position and role? This reflexivity is essential as it shapes the very research questions we ask and our rationale for engaging with communities. It is from this intersectional lens that Dr. Michener proposed the values of equity, dignity, and democracy as anchors for ethical public engagement. - Excerpt from a blog post written by Joanna Massie, Roma Dhamanaskar, and Rana Saleh ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] ----------------- Links: Dr. Jamila Michener on twitter Video of Dr. Michener’s keynote Public Engagement in Health Policy project

Kim McGrail is the Scientific Director of Health Data Research Network, a CIHR funded initiative whose work in the health data space has implications for, well, everyone living in Canada. And they're keen to involve the public not just in getting input, but in providing guidance into key decisions. HDRN's work is both technical and somewhat conceptual: their aim is to support researchers to better access health data for research from multiple sources and regions, while respecting local, regional and Indigenous rights, cultural practices and laws. Public engagement in this context may seem straightforward, but it's hardly so. In this episode, we talk through some of HDRN's challenges and opportunities related to understanding public concerns related to the collection, use and sharing of health data. Although we touch on some of the operational and technical details of HDRN's work, our primary focus is on the use of deliberation as an engagement approach. And how it's difficult to talk about engagement at a pan-Canadian level without also considering democratic ideals and how we might navigate living together as a diverse society. ----------------- This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Kim McGrail on twitter Kim McGrail's profile Mentioned in this episode: Health Data Research Network HDRN Public Advisory Council Paris Citizens' Assembly

In this episode, we continue our conversation with Alpha Abebe and Rhonda C. George! (Haven't heard the first conversation yet? Listen here!) This time, we talk about Black communities' response to COVID, and public health response to Black communities. ----------------- During a public health crisis is the exact wrong time to try and build relationships and trust with communities who have not historically been included in health policy decision making, and whose health and health care needs continued to be neglected. But this, of course, doesn't mean that Black communities didn't recognize both the real danger posed by COVID, or their own tenuous connection to mainstream health services. Alpha and Rhonda share how leaders of Black-led organizations rallied to address community needs during COVID, and discuss the importance of supporting Black communities to build capacity and resilience for the future. ----------------- Alpha Abebe is an Assistant Professor in the Faculty of Humanities at McMaster University, and Rhonda C. George is a PhD candidate in Sociology at York University. They're both researchers with the Public Engagement in Health Policy Project. This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Alpha Abebe Profile on twitter Rhonda C. George Publications on twitter Related links: Unpacking the ‘Public’ in Public Engagement: In Search of Black Communities Failure to include Black communities in health policy public engagement perpetuates health disparities Mentioned in this episode: Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George Tuskegee https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://eji.org/news/history-racial-injustice-tuskegee-syphilis-experiment/ OCAP® https://fnigc.ca/ https://fnigc.ca/ocap-training/ Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud Public Engagement in Health Policy Project The Future of Canada Project

We're back! We're excited to get rolling on this new series on Health Policy! We have a range of questions we want to explore, including: who is involved in making policy, and how are public needs identified? How is public engagement defined? And who is included or excluded? We're kicking off the series with a conversation with Julia Abelson. Julia is a professor at McMaster University in the Department of Health Evidence and Impact and an associate member in the Department of Political Science. She has a special research interest in public engagement in health system governance, and the analysis of the determinants of health policy decision making. Julia's been on the podcast before (Evaluating Patient Engagement) and this time around, she's back to talk about the Public Engagement in Health Policy project, based at McMaster. We reconnected with Julia to chat about some of the early insights learned in the project so far. One of the research themes in the project is Looking Back, reflecting on the evolution of engagement practices and health policy and seeing what can be learned from past experiences. In this episode, Julia shares her insights related to trends in engagement in health policy, and also discusses one of the project's first outputs - a case survey of government-initiated public engagement in health policy. This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca [download transcript] Guest links: Julia Abelson on twitter Julia Abelson at McMaster PPE Collaborative Previous episode with Julia Mentioned in this episode: Public Engagement in Health Policy Project Trends in Public Engagement in Canadian Health Policy from 2000-2021: Results from a Comparative Descriptive Analysis The Future of Canada Project

For this final episode of Season 3, we want to acknowledge the Ontario SPOR SUPPORT Unit for supporting us to get this project off the ground and establish a solid foundation for critical dialogue about patient engagement and partnership. So we're turning things over to members of OSSU's Patient Partner Working Group: Annette McKinnon, Bilqis Williams, and honourary member, Stuart Nicholls. We invited them to share their thoughts on patient partnership today, and where they think it's heading. Stay tuned, more to come!! [download transcript] Guests: Annette McKinnon (linkedin, twitter) Bilqis Williams (linkedin, twitter, instagram) Stuart G. Nicholls (Ottawa Methods Centre, twitter) Mentioned in this episode: Ontario SPOR SUPPORT Unit Ottawa Methods Centre IC/ES Strategy for Patient-Oriented Research OMERACT Patient Advisors Network Additional music and production support provided by Angus Turney