Matters of Engagement

By: mattersofengagement
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  • Summary

  • 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, to provoke much-needed critical dialogue among all stakeholders.
    Copyright 2020 All rights reserved.
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Hygiene & Healthy Living Physical Illness & Disease Science Social Sciences
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Episodes
  • Caregiving and Work

    Caregiving and Work
    Jan 3 2024

    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 weeks ago, which was specifically focused on her experiences as an extreme caregiver, trying to earn a living.

    After that short recording - which is about 10 minutes - tune in to Jennifer and Emily's conversation about advocacy, policy, and choice.

    In this episode:

    00:00 What to expect in this episode 01:20 Jennifer's experience as an extreme caregiver 02:20 Right to flourish, caregiving through a bioethics lens 03:34 Caregiving and choice 04:38 Disability is seen as a personal or family tragedy 05:18 Accessing and managing support can be burdensome 06:09 Extreme caregiving has an opportunity cost 06:51 Financial precarity and gender 08:09 What does society prefer to support? 08:50 Caregiving as unpaid labour keeps caregivers in financial dependency 10:01 Policy considerations and conclusion of talk 11:11 Jennifer and Emily have a candid discussion! 15:18 Advocacy vs. organizational agendas 16:59 Caregiving can be fulfilling and also has a cost. Extreme caregiving is rarely a choice 18:47 How do we differentiate between regular parenting/caregiving and 'extreme' caregiving? 27:06 The amount of work that goes into managing and administering everything that goes along with extreme caregiving 29:04 Putting some choice back into challenging circumstances 35:35 Moral arguments for policy makers 36:53 Caregiving policies potentially impact everyone 40:29 Navigating care responsibilities as a family or partnership 44:53 "Performing" for therapists 46:39 Shared decision-making and patient/family priorities 49:18 Jen and Emily reflect on how little they've talked about Jennifer's experiences with Owen 51:14 Jen and Emily acknowledge that caregivers don't all have the same opportunities, experiences, or perceptions

    [download transcript]

    Summit links:

    • Canadian Caregiving Summit
    • Jennifer's session at the Summit
    • Azrieli Foundation
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    55 mins
  • ”How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research project

    ”How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research project
    Jul 13 2023
    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 out how this one particular healthcare research project handled it. The details of the project are not really what this episode is about. Instead, our intention is to showcase a number of different perspectives about the use of patient partners within a federally funded healthcare research project. You're going to hear from two of the project's researchers (PI Dr. Noah Ivers and Celia Laur), two patient partners (Barbara Sklar and Michael Strange) - they actually call themselves Lived Experience Advisors, or LEAs - and our very own Emily Nicholas Angl, who helped to bridge communication between the two groups. In this episode: 00:17 Why Jen is hosting solo 01:06 About this research project 02:05 What’s an ”innovative clinical trial”? 04:00 Dr. Noah Ivers’ research objectives 06:15 Why this project was complex 09:34 Should patient partners do more technical work? 10:42 What are we asking patients to do? 13:20 Barbara: Engaging patients is like the Wild West! 15:57 Michael: Sharing my experience may help someone 18:03 Barbara: Engaged patients are like liaisons 20:01 Patients should do what interests them 21:28 Reflecting on constraints 22:29 Barbara: Patient advisors should not be ”partners” 24:41 Figuring things out as they go 25:44 What did the Advisors actually do? 30:34 Michael: Opioids are not inherently bad 32:24 Barbara: I get a lot of benefit from being an LEA 35:03 Reflections on Emily’s role, as Lead Advisor 38:08 Who decides what’s relevant (re patient input)? 39:05 Why research teams might want a Lead Advisor 40:29 Are there areas where patient input is less relevant? 43:01 Jennifer interviews Emily! 01:07:35 Ending and credits About the research project: The project (the results of which are not yet published) and is an "innovative clinical trial", which means that it uses methods alternative to more traditional randomized controlled trials. The research had two streams, both related to primary care - one focused on prescribing opioids, and one on prescribing antibiotics. Both of these are areas where there can be serious impacts at the individual patient level, but also in terms of public health more broadly. And particularly with opioids,. defining exactly what appropriate prescribing looks like is really tricky. And primary care physicians aren't always aware of, or maybe just aren't following, the most recent evidence-based guidelines. So this project explored if and how some specific interventions could shift prescribing behavior towards established best practices. We will continue to update the links on our website as publications and further information becomes available. [download transcript] ------------------------------ Research project information: Project lay summary (PDF)Patient Partner Orientation presentation (PDF)Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Innovative Clinical Trials Initiative (iCT) Research background information and context: The Opioid Chapters: 11 stories that show how complex the crisis isVideo: Improving antibiotic prescribing by reducing antibiotic use, duration of therapy and drug costsWebinar: Advancing Audit and Feedback Science and Antibiotic Stewardship in Primary Care Guest links: Dr. Noah Ivers profileDr. Noah Ivers on twitterCelia Laur PhD profileCelia Laur on twitter Previous episodes featuring patient partner views: Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021Policy Development in a Pandemic: is there a Role for Patient Partners? With Julie Drury and Christa Haanstra October 5, 2020Reflections on Engagement, with Lorraine, Maureen, Keith and Jess August 30, 2020Expertise Part 2, with Francine Buchanan June 16, 2020
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    1 hr and 9 mins
  • Spring Update 2023: Checking in with Jen and Em

    Spring Update 2023: Checking in with Jen and Em
    Jun 13 2023

    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 resources
    • Matters of Engagement presents "Podcasting for Knowledge Translation" webinar

    Contact us to book an exploratory conversation about how podcasting can support community outreach and knowledge mobilization! Visit our website at mattersofengagement.com
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    9 mins
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