Matters of Engagement

Matters of Engagement

There’s a lot of enthusiasm for patient engagement and partnership right now, but not a lot of opportunities for more nuanced or critical dialogue about what may *really* be happening, or not happening at all. The podcasting format is an ideal vehicle to host conversations and reflections that we think may shed more light on why some issues continue to be difficult or confounding. Jennifer and Emily host each episode, providing a blend of interviews (with patient partners, researchers, academics and engagement professionals), scripted narration, and presentation of existing research papers and opinion pieces. The goals for each episode are slightly different – perhaps to further a conversation already being had, or to give name to experiences that are hard to describe, or to draw on research and theory to attempt to explain why things are the way they are.

Episodes

March 4, 2021 78 min

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 Pomeroy of SPORcast, and Jennifer Johannesen and Emily Nicholas Angl, ...

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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 engagement practice as something separate, maybe adjacent, to everyday operations. But...

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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 especially interesting. (The panelists are: Elizabeth Stephenson, Fra...

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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 comes to engaging in storytelling. We will be sharing all three episodes on our platf...

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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 comes to engaging in storytelling. We will be sharing all three episodes on our platf...

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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 comes to engaging in storytelling. We will be sharing all three episodes on our platf...

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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...

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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 minimizing patient accounts, complaints, and reports... essentially,...

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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 we love working together on this podcast.

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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 hiring people with lived experience into certain roles.  Then, takin...

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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, many patient engagement and partnership activities were suspended, or dropp...

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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 rare opportunity to hear patient partners' heartfelt expressions of gratit...

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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 everything from research to clinical service delivery to bedside chair design. 

[downl...

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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 Patient Engagement. 

 

Julia reflects on her own experiences as a researcher of patient...

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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 perspective on why and how." They share their experiences and perspectives as l...

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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.  

The Empowerment Council is a mental health service user advocacy organization fu...

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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 concept of “recruitmentology” to engagement practice, explores types of representation...

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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 Frank's.  

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Mentioned in this episode:

  • How do patients...
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    June 16, 2020 25 min

    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 in our conversation.

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    Mentioned in this episode:

  • The risks ...

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    June 10, 2020 6 min

    Welcome to Matters of Engagement - a podcast exploring the complex world of patient engagement and partnership. Full episodes will be released starting July 1 June 16 2020. In this short trailer, meet your hosts Jennifer and Emily. 

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