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.... Show More

Episodes

October 18, 2020 49 min

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, taking ...

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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 gratitud...

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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. 

[downloa...

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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 eng...

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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 fund...

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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 attain ...
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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 of equa...

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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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