Matters of Engagement

13/07/2023

**New podcast episode!!**

Wondering how other health research teams navigate patient engagement and partnership? Have a listen to one team’s reflection as their multi-year project comes to an end...

“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 ...

13/06/2023

New episode!!!! 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.

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] Contact us to book an exploratory conversation about how podcasting can support community out...

16/02/2023

New episode in our 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.

To help address this 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.

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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....

15/12/2022

New episode in our Health Policy Series! Critical Reflections on Public Engagement, featuring the voices of Rhonda C. George, Joanna Massie, Genevieve Fuji Johnson (she/her), Katherine Boothe, Alana Cattapan - and us!

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.

If you’re interested in critical work on public engagement, this episode (and the previous one with Dr. Michener's keynote) is an excellent summary of a stellar conference!

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; ...

23/11/2022

New episode in our Health Policy series: Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe

What makes an engagement process legitimate? How do technical experts feel about engagement, and how have their ideas of legitimacy changed over time? These are just some of the questions we explore with our guest, Katherine (Katie) Boothe, Associate Professor in the Political Science Department at McMaster University.

A recent paper of Katie’s, “Redefining Legitimacy in Canadian Drug Assessment Policy? Comparing Ideas Over Time” seeks to understand how and when people’s ideas of legitimacy change when lay members are added to otherwise ‘expert only’ committees. In this case, the context is Canadian drug assessment advisory committees, where a group of technical experts and lay members help to determine what pharmaceutical drugs should be covered by public drug insurance policies.

Join us for this fascinating conversation exploring how public and patient engagement challenges pre-existing standards of what constitutes “good” scientific evidence, and how (unarticulated) differing rationales and goals for engagement can lead to frustration and disappointment.

What makes an engagement process legitimate? How do technical experts feel about engagement, and how have their ideas of legitimacy changed over time? These are just some of the questions we explore with our guest, Katherine (Katie) Boothe, Associate Professor in the Political Science Department at....

18/09/2022

New episode! Health Policy Series: Deliberation, Democracy and Public Engagement, A Conversation with Kim McGrail

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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 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.

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...

26/07/2022

New episode in our Health Policy Series! "The Business and Politics of Engagement, with John Perenack of StrategyCorp"

In previous episodes we’ve talked a lot about high-level rationales for engagement, like democratic principles and moral or ethical obligations. But we haven’t really got into some of the operational nuts and bolts, like the fact that there’s a whole fee-for-service industry out there – agencies hired by healthcare organizations to support engagement strategy and activities.

Join us for this behind-the-scenes look at what engagement-for-hire looks like. What is the work that’s involved? And how does a strategic consulting firm advise on or think about engagement? Is any of this actually useful or meaningful, or does it only fulfill some kind of strategic or tactical purpose?

We attempt to get to the bottom of these questions with John Perenack, of StrategyCorp. John is a communications specialist who often supports clients in developing public and stakeholder engagement strategies and activities. We’re excited to bring you this fascinating and illuminating conversation!

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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

https://mattersofengagement.com/the-business-and-politics-of-engagement-with-john-perenack-of-strategycorp/

In previous episodes we’ve talked a lot about high-level rationales for engagement, like democratic principles and moral or ethical obligations. But we haven’t really got into some of the operational nuts and bolts, like the fact that there’s a whole fee-for-service industry out there – agen...

16/06/2022

Latest episode from our Health Policy Series! "Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George"

https://mattersofengagement.com/health-policy-series-black-communities-medical-mistrust-and-covid-response-with-alpha-abebe-and-rhonda-c-george/

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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.

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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

https://mattersofengagement.com/health-policy-series-black-communities-medical-mistrust-and-covid-response-with-alpha-abebe-and-rhonda-c-george/

07/06/2022

New episode! Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George

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Alpha and Rhonda’s research foregrounds Black community experiences and insights related to health policy engagement. We’re featuring their work over two back-to-back episodes. This episode focuses on the engagement work of Black communities. Our guests want to “flip the script,” shifting away from a deficit model of understanding Black community engagement.

The follow up episode features Alpha and Rhonda’s research on Black community engagement during COVID, and includes discussion on why they think it’s valuable for Black researchers to be doing this kind of work.

Alpha and Rhonda are members of the Public Engagement in Health Policy team based at McMaster University, which aims to strengthen health policymaking in Canada by providing a platform for interdisciplinary scholarship, education and leadership in public engagement.

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

https://mattersofengagement.com/health-policy-series-flipping-the-script-on-narratives-about-black-communities-and-engagement-with-alpha-abebe-and-rhonda-c-george/

In this episode, we continue our Health Policy series with guests Alpha Abebe and Rhonda C. George. Alpha and Rhonda’s research foregrounds Black community experiences and insights related to health policy engagement. We’re featuring their work over two back-to-back episodes. This episode focuse...

22/05/2022

New episode!!

"Health Policy Series Kick-off!: A retrospective look at public engagement, with Julia Abelson"

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

https://mattersofengagement.com/health-policy-series-kick-off-a-retrospective-look-at-public-engagement-with-julia-abelson/

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 ...

13/04/2022

Quick check in! Have a listen:

https://mattersofengagement.com/onwards-and-upwards-jen-and-emily-check-in/

Just a quick check in to say hello and share what’s next! [download transcript]

29/03/2022

New episode!

"Season 3 Finale: Patient Partner Reflections, brought to you by OSSU"

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 G. Nicholls. We invited them to share their thoughts on patient partnership today, and where they think it’s heading.

Stay tuned, more to come!!

https://mattersofengagement.com/season-3-finale-patient-partner-reflections-brought-to-you-by-ossu/

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...

03/02/2022

New episode!

Moral Distress in Engagement Professionals, with Mark Weir

Our guest Mark Weir is a seasoned engagement professional working in healthcare. Typically, engagement-related communities of practice tend to focus on things like best practices and ‘how to’ – not so much on the emotional toll it can take to fully engage in the work. In a recent IAP2 Canada workshop, Mark explored the effects of “moral distress”, which he defines as feeling stuck and wanting to do the right thing but constrained due to systemic or institutional barriers – which are beyond the engagement professional’s control. We spoke to Mark about the experience of carrying these kinds of burdens, which can go unseen or unacknowledged.

Not only did we get to delve deeper into the experience of engagement work - this was also an opportunity to take a closer look at the context of engagement in general. What are some possible causes of this distress? And what does it say about the overall project of patient engagement?

In this episode, we hear from Mark about the challenges faced by engagement professionals (in healthcare) due to moral distress, and then later in the episode, we try to sort through some of the bigger, confounding questions that seem to follow us from episode to episode!

https://mattersofengagement.com/moral-distress-in-engagement-professionals-with-mark-weir/

Our guest Mark Weir is a seasoned engagement professional working in healthcare. Typically, engagement-related communities of practice tend to focus on things like best practices and ‘how to’ – not so much on the emotional toll it can take to fully engage in the work. In a recent IAP2 Canada w...

20/12/2021

New episode! Engagement in Context: Reflections from Jenn Broad and Paula Tookey of the South Riverdale Community Health Centre

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Most of our episodes have been about engagement in institutional healthcare spaces – places like hospitals or research institutes. But of course, there are a multitude of other places where patient or service user engagement takes place.

Our guests are Jenn Broad and Paula Tookey. They work out of the South Riverdale Community Health Center in East Toronto. Jenn is the Program Manager of Harm Reduction and Hep C. And Paula is the Manager of Keep Six, a consumption and treatment service, which is a health service described as a place where people inject, snort, or orally consume pre-obtained drugs in a safe, hygienic and welcoming environment under the supervision of trained staff.

As you listen, we encourage you to tune in to their insights specific to engagement within a community that experiences persistent stigma and systemic discrimination. What we learned from talking to Jenn and Paula is that engagement in certain health related community services, like harm reduction programs, has different and possibly higher stakes for the people involved than what we typically think of as “patient engagement”, in mainstream or organizational health services.

https://mattersofengagement.com/engagement-in-context/

Most of our episodes have been about engagement in institutional healthcare spaces – places like hospitals or research institutes. But of course, there are a multitude of other places where patient or service user engagement takes place.  Our guests are Jenn Broad and Paula Tookey. They work out ...

13/12/2021

New 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.

https://mattersofengagement.com/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 men...

25/11/2021

New episode! Interview Extra: Advocacy and Health Equity, feat. Biba Tinga of the Sickle Cell Disease Association of Canada

We initially spoke with Biba to ask for her reflections on the Equity and Diversity episode with Nav Persaud. But once we started talking, we realized that Biba’s experience as an advocate was almost a perfect case study of what we’ve been talking about – the importance of focusing on health equity, as opposed to comparatively simple notions of diversity. So even though this episode is an extension of the Patient Partner Reflections segment in the previous episode, it also gets into some of the realities of advocating for policy change to support the health needs of a racialized group – one that is disproportionately affected by a rare disease, and is not well supported by our Canadian health care system.

- Sickle cell disease is an inherited blood disorder. And according to Health Canada, it can shorten the life of affected individuals by more than 30 years. It’s caused by abnormally shaped red blood cells that can impair blood flow, causing strokes, lung disease and organ damage. In Canada, around 5000 people live with sickle cell disease, and it most commonly affects people of African descent, as well as Caribbean, Latin or South American, Middle Eastern and South Asian descent. -

https://mattersofengagement.com/interview-extra-advocacy-and-health-equity-feat-biba-tinga-of-the-sickle-cell-disease-association-of-canada/

Our guest, Biba Tinga, is President and Executive Director of the Sickle Cell Disease Association of Canada. We initially spoke with Biba to ask for her reflections on the Equity and Diversity episode with Nav Persaud. But once we started talking, we realized that Biba’s experience as an advocate ...

17/11/2021

NEW EPISODE! EQUITY, DIVERSITY AND PATIENT ENGAGEMENT, WITH DR. NAV PERSAUD

There's increasing pressure on government and healthcare institutions to address barriers to health equity, which disproportionately impact people who experienced systemic racism, and other disadvantage or mistreatment. And these barriers have always existed. But awareness has been heightened lately in the public consciousness by news coverage of recent world events. And we're now hyper-aware of race related health disparities and inequities, unequal access to health care for people who experience systemic disadvantage, and the lack of support for the health of indigenous peoples. Governments and healthcare organizations are under intense scrutiny for how they handle equity, health equity and diversity. And the stakes are really high.

So what does this have to do with patient engagement and partnership? Well, we think a lot. The goals of these programs include improving health equity and equitable access to health care for everyone. And the belief is that diversity among engaged patients - diversity representative of the people in Canada - is critical to helping achieve these goals. One of the problems is that engaged patients are mostly middle class, white, and female. There are exceptions of course, but there is a long way to go. So to help achieve desired levels of diversity, there's a lot of focus on recruitment, outreach and accessibility, all in an effort to attract people from underrepresented groups.

We've been keen to talk through some of these ideas and assumptions as we think there are some interesting tensions to unpack. So we contacted our guest, Dr. Nav Persaud, for perspective and insight. We hope you find our discussion as illuminating as we did!

https://mattersofengagement.com/equity-diversity-and-patient-engagement-with-nav-persaud/

There’s increasing pressure on government and healthcare institutions to address barriers to health equity, which disproportionately impact people who experienced systemic racism, and other disadvantage or mistreatment. And these barriers have always existed. But awareness has been heightened late...

03/11/2021

New episode: Webinar Extra feat. Paula Rowland!

On October 12 2021, Emily and Jennifer moderated an online presentation featuring Paula Rowland. Paula was a guest way back in Season One, discussing a paper she co-authored with Arno Kumagai, called Dilemmas of Representation. We wanted to post the session here because it revisits and also builds on the themes in the original paper.

This presentation was part of a series called Best Practice in Education Rounds, co-sponsored through the Center for Faculty Development, The Wilson Centre, and the Centre for Interprofessional Education at the University of Toronto.

https://mattersofengagement.com/webinar-extra-paula-rowland-presents-dilemmas-of-representation-for-bper/

On October 12 2021, Emily and Jennifer moderated an online presentation featuring Paula Rowland. Paula was a guest way back in Season One, discussing a paper she co-authored with Arno Kumagai, called Dilemmas of Representation. We wanted to post the session here because it revisits and also builds o...

21/10/2021

We've launched Season 3! First episode, out now:

PATIENT-ORIENTED TO PATIENT-PARTNERED: ASPIRATIONS, IMPLICATIONS, CHALLENGES

In this first episode of Season 3, we go back to basics. What does “patient-oriented” (as in patient-oriented research) actually mean? To answer this and other questions, we’re joined by Vasanthi Srinivasan, Executive Director of the Ontario SPOR SUPPORT Unit, and Maureen Smith, Chair of OSSU’s Patient Partner Working Group and member of OSSU’s Board of Directors. (OSSU is a generous financial supporter of this podcast.)

Vasanthi outlines the hopes and dreams of the patient-partnership movement, sharing the vision for a culture change and acknowledging that there’s still a way to go. Maureen shares her perspective as a long-time patient partner, providing a frank account of the possibilities – and challenges – of partnering in research.

Join us for these two illuminating conversations in which we discuss the aspirations, implications and challenges in moving towards a “patient-partnered” future.

https://mattersofengagement.com/patient-oriented-to-patient-partnered-aspirations-implications-challenges/

In this first episode of Season 3, we go back to basics. What does “patient-oriented” (as in patient-oriented research) actually mean?  To answer this and other questions, we’re joined by Vasanthi Srinivasan, Executive Director of the Ontario SPOR SUPPORT Unit, and Maureen Smith, Chair of OSS...