✨ Coming soon! ✨ The 5-part BETTER Women Series ❤️

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.

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⭐ REPLAY! ⭐ Discussing Failures in Participatory Research, with Lori Ross

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.

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Guests:

Mentioned in this episode:

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

⭐ REPLAY! ⭐ Vagueness of language, unarticulated assumptions, and maintaining the status quo

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. 

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Mentioned in this episode:

 

 

 

We’re Back! Matters of Engagement Returns with a Splash 🌊

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!

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Caregiving and Work

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.

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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

Summit links:

“How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research project

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) 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 below as publications and further information becomes available. 

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Research project information:

Research background information and context:

Guest links:

Previous episodes featuring patient partner views:

Spring Update 2023: Checking in with Jen and Em

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.

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Contact us to book an exploratory conversation about how podcasting can support community outreach and knowledge mobilization! Email us at mattersofengagement@gmail.com

Mentioned in this episode:

Health Policy Series: Beyond Mandates – The Essential Input of Residents in Long-term Care Policy

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 monthly 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.

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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

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Guest links:

Previous episodes related to “lived experience as expertise”

Health Policy Series: Critical Reflections on Public Engagement

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!

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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

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Previous episodes mentioned:

Conference links:

Guest and supporter links:

Health Policy Series: Transformative Public Engagement: Pitfalls, Possibilities and Promise – keynote by Dr. Jamila Michener

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 

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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

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Links: