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

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Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George

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.

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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. 

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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

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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 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

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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

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

Stay tuned, more to come!!

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Guests:

Mentioned in this episode:

Additional music and production support provided by Angus Turney

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!

* This episode was updated Feb 5 2022 to correct our error in misstating Mark’s training. His background is in genetics and health ethics. 

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Guest:

Mentioned in this episode:

Additional music and production support provided by Angus Turney

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

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.

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Guests:

  • Jenn Broad, Program Manager of Harm Reduction and Hep-C, South Riverdale Community Health Centre
  • Paula Tookey, Manager of Keep Six Consumption and Treatment Service, South Riverdale Community Health Centre

Mentioned in 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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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 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.

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