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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

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 solo 01:06 About this research project 02:05 What’s an ”innovative clinical trial”? 04:00 Dr. Noah Ivers’ research objectives 06:15 Why this project was complex 09:34 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 someone 18:03 Barbara: Engaged patients are like liaisons 20:01 Patients should do what interests them 21:28 Reflecting on constraints 22:29 Barbara: Patient advisors should not be ”partners” 24:41 Figuring things out as they go 25:44 What did the Advisors actually do? 30:34 Michael: Opioids are not inherently bad 32:24 Barbara: I get a lot of benefit from being an LEA 35:03 Reflections on Emily’s role, as Lead Advisor 38:08 Who decides what’s relevant (re patient input)? 39:05 Why research teams might want a Lead Advisor 40:29 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, Maureen, Keith and Jess August 30, 2020 Expertise Part 2, with Francine Buchanan June 16, 2020

It's been a while since we've published an episode!  We have lots on the go these days. Come hang out with Jen and Em as we wrap up the Health Policy series and share what's next. [download transcript]   Mentioned in this episode: Public Engagement in Health Policy Project Supporting equity-centred engagement - A step-by-step guide with tailored resources Matters of Engagement presents "Podcasting for Knowledge Translation" webinar Contact us to book an exploratory conversation about how podcasting can support community outreach and knowledge mobilization! Visit our website at mattersofengagement.com  

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

We're bringing conference vibes to the podcast and presenting a short series of critical work on public engagement from members of the Public Engagement in Health Policy team.  We noted themes of: community exclusion from formal engagement processes; misalignment of goals; questions of legitimacy; and challenges of conducting community-engaged research in institutional settings.  We already published the keynote from Dr. Jamila Michener on Transformative Engagement - and in true conference fashion, we're also sharing our roundtable breakout discussion with researchers Katie Boothe and Alana Cattapan!  Featuring excerpts from presentations recorded at this conference, Reimagining public engagement in a changing world: ‘If we don’t do it, who will’? An exploration of Black community agency in health policy and advocacy in Ontario - Dr. Alpha Abebe and Rhonda C. George, McMaster University Engaging deliberately: Exploring deliberation in two Canadian health systems - Joanna Massie, McMaster University The Epistemic Injustices of Public Engagement: When nothing is done to meet the demands of Nothing about Us without Us! - Dr. Genevieve Fuji Johnson, Simon Fraser University Followed by (the more interesting parts of!) our actual conversation with Katherine (Katie) Boothe (Associate Professor at McMaster in the Political Science department and a team member in the Public Engagement in Health Policy Project) and Alana Cattapan (Canada Research Chair in the Politics of Reproduction and Assistant Professor in the Department of Political Science at the University of Waterloo). We debrief on conference themes, share critical reflections and occasionally complain about the state of funding and support for community-engaged research.  If you're interested in critical work on public engagement, this episode (along with the Dr. Michener's keynote) is an excellent summary of a stellar conference! ----------------- 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]   Previous episodes mentioned: Health Policy Series: Transformative Public Engagement: Pitfalls, Possibilities and Promise – keynote by Dr. Jamila Michener November 29, 2022 Health Policy Series: Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe November 17, 2022 Health Policy Series: Deliberation, Democracy and Public Engagement, A Conversation with Kim McGrail September 15, 2022 Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George June 16, 2022 Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George June 7, 2022 Discussing Failures in Participatory Research, with Lori Ross December 13, 2021 Conference links: Conference overview Videos of Jamila Michener’s keynote and panel presentations by Alpha Abebe and Rhonda C. George, Joanna Massie, Genevieve Fuji Johnson Guest and supporter links: Katherine (Katie) Boothe on twitter Alana Cattapan on twitter Public Engagement in Health Policy project

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