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Matters of Engagement examines issues at the intersection of health, health care and society. Including: how people in Canada access and experience health care service delivery and distribution; how those experiences impact both individual and community health; and the multitude of environmental, systemic, and political factors that favour some and disadvantage many. Jennifer Johannesen and Emily Nicholas Angl produce each episode with the aim of illuminating difficult or confounding issues, ...
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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 …
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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 …
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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 resou…
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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 range of needs, interests and concerns. And across…
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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 resea…
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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 a…
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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 (Re…
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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 concept…
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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 engageme…
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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 relatio…
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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 gue…
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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…
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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 Willi…
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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", …
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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…
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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, tran…
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Hi there – Jennifer here! We know everyone’s busy this time of year, so just a quick announcement! We’re looking for some short contributions for an upcoming episode. The one we’re working on examines some of the challenges of conducting participatory research in an academic or institutional setting. So… if you’ve been involved in a participatory r…
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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 t…
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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 r…
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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 presentat…
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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 Boa…
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We're busy preparing for our next season. But in the meantime, we have a fun episode to share with you! It's the recording of the webinar we did in collaboration with our friends at PEP Talks and SPORcast, in January 2021. It was a live session called "Podcasts and Patient Engagement" and features Paul Fairie and Sandra Zelinsky of PEP Talks, Bev P…
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The Ontario Center of Excellence for Child and Youth Mental Health is an organization that supports the child and youth mental health sector through a number of initiatives and services. Their approach to developing and delivering that support is done in active collaboration with young people and their families. In healthcare spaces, we often see e…
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Back in December 2020, Jennifer moderated a panel for Child-Bright titled "Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research". Child-Bright and the panelists generously agreed to let us use 'tape' from that session to explore some of the themes we thought our listeners would find …
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We have a special mini-series we’re releasing this week: Engaging in Storytelling: A 3-part collaborative podcast series with SPOR Cast, Matters of Engagement and PEP Talks. We each cover a different angle on patient stories and storytelling – together they provide a rich picture of some of the challenges, concerns, and also opportunities when it c…
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We have a special mini-series we’re releasing this week: Engaging in Storytelling: A 3-part collaborative podcast series with SPOR Cast, Matters of Engagement and PEP Talks. We each cover a different angle on patient stories and storytelling – together they provide a rich picture of some of the challenges, concerns, and also opportunities when it c…
  continue reading
 
We have a special mini-series we’re releasing this week: Engaging in Storytelling: A 3-part collaborative podcast series with SPOR Cast, Matters of Engagement and PEP Talks. We each cover a different angle on patient stories and storytelling - together they provide a rich picture of some of the challenges, concerns, and also opportunities when it c…
  continue reading
 
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 an…
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The Patient Experience Library is a UK-based online archive of research and reports focused on patient experience. They just published a report titled "Inadmissible Evidence" which outlines, in direct and accessible terms, why they think patient experience evidence is not valued alongside medical evidence. Their answer? It's healthcare's culture of…
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It'll be another week or so until we release our next scheduled episode. So we thought this would be a perfect opportunity to give listeners a bit of insight into how we approach making this podcast! This is our unscripted (but lightly edited) conversation about everything from interviewing guests to how we think about scripting and editing to why …
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What exactly do we mean when we say 'lived experience'? What does it convey that other terms don't? What sort of extra 'work' is the term doing, and for whose benefit? Lots to consider! We take listeners through two segments in this episode. First, we speak with an organization that is committed to patient engagement and partnership, and also hirin…
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Early on in the pandemic, Ontario's long term care (and other healthcare) facilities) shut out all visitors and family members from visiting their loved ones. This included essential (unpaid) family caregivers, who are typically an important part of a resident's care team. The hardship has been, and continues to be, unbearable for many. In addition…
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In this final episode of the season, we invite special guests Lorraine, Maureen and Keith (patient partners) as well as Jess (researcher/MD from the UK), to reflect on their experiences of participating in and researching engagement, and to comment on previous episodes which might have found some resonance with them. Don't miss this one! It's a rar…
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How does an organization like Holland Bloorview Kids Rehabilitation Hospital evaluate its extensive client and family engagement programs? Join us for this wide-ranging and engaging conversation with Aman Sium, Director of Client and Family Integrated Care. Get an in-depth look at how this world renowned facility involves clients and families in ev…
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How can we evaluate patient engagement when often the goals for engagement are not clearly defined or articulated? How do we come to agreement on what good engagement looks like? Join us for this illuminating conversation with researcher Julia Abelson on challenges and opportunities for improvement in this relatively new field of Evaluation of Pati…
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How to compensate patient partners, and under what circumstances, has long been a topic of debate among patient partners, researchers, and engagement professionals. Join us as we speak with Zal Press and Dawn P. Richards, co-authors (with Isabel Jordan and Kimberly Strain) of "Patient partner compensation in research and health care: the patient pe…
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Patient engagement is often loosely described as adhering to democratic principles even though, as we discussed in Dilemmas of Representation, there is rarely an election apparatus to support it. We thought it would be interesting to learn more about patient-led organizations that democratically elect who speaks and acts on their community’s behalf…
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Calls for more diversity and better representation among engaged patients or patient partners seem to prompt changes to recruitment tactics and making engagement more accessible. What if there’s more to it than that? We talk to Paula Rowland about the paper she co-authored (with Arno Kumagai) called “Dilemmas of Representation“, which applies the c…
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Patient partners should be supported to elevate their skills and knowledge so they can contribute to healthcare improvement and system change, as experts in their own right. This is how Francine Buchanan sees the future of patient partnership. We speak with Francine about her views, and about the article she wrote on healthydebate.ca in response to…
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Are patients ‘experts’? Does lived experience automatically mean one has expertise? What are we really saying, or accomplishing, when we call patients experts? We think about these questions and talk to Frank Gavin about his article on healthydebate.ca. Frank isn’t sold on the ‘expert’ label as it applies to patient experience, and he explains why …
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