Episodios

  • 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 m
  • ”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 h y 9 m
  • 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 m
  • Beyond Mandates: The Essential Input of Residents in Long-term Care Policy (Health Policy Series)

    Beyond Mandates: The Essential Input of Residents in Long-term Care Policy (Health Policy Series)
    Feb 16 2023

    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 the spectrum of needs, residents have a strong desire to participate in key decision-making processes. Instead, they are often excluded.

    To help address the diversity of needs and interests, resident populations in each home are represented by provincially mandated Residents' Councils. Each home has a Council (made up of residents who are interested and capable of participating) that convenes regularly and is tasked with collecting the feedback of residents, which ultimately is supposed to inform LTC home policy and management. However, there are many potential barriers to these Councils performing effectively and meaningfully.

    This is where the Ontario Association of Residents' Councils (OARC) comes in. The OARC supports local Residents' Councils to communicate and perform with more impact, and also works to amplify the voices and interests of LTC residents at provincial policy-making tables.

    Two of our guests, Gale and Devora, each live in a Long-term Care home in Ontario and are vocal advocates for giving residents a more meaningful voice in the development and application of policies that affect them and their co-residents. Gale and Devora lead their own local Residents' Councils and are active members within the OARC. Our third guest, Dee Tripp, is the Executive Director of the OARC.

    In this episode, we discuss the realities of living in Long-term Care from residents' perspectives, and the impact of living with policies and restrictions they may not have had a say in making. We also talk about what needs to change in order for residents' voices to become better integrated into LTC policy-making.

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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

    [download transcript]

    Guest links:

    • Ontario Association of Residents' Councils
    • OARC on twitter

    Previous episodes related to "lived experience as expertise"

    • Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy – with Lucy Costa July 6, 2020
    • Dilemmas of Representation, with Paula Rowland June 29, 2020
    • Expertise Part 2, with Francine Buchanan June 16, 2020
    • Expertise Part 1, with Frank Gavin June 16, 2020
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    48 m
  • Critical Reflections on Public Engagement (Health Policy Series)

    Critical Reflections on Public Engagement (Health Policy Series)
    Dec 15 2022
    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 research in institutional settings. We already published the keynote from Dr. Jamila Michener on Transformative Engagement - and in true conference fashion, we're also sharing our roundtable breakout discussion with researchers Katie Boothe and Alana Cattapan! Featuring excerpts from presentations recorded at this conference, Reimagining public engagement in a changing world: ‘If we don’t do it, who will’? An exploration of Black community agency in health policy and advocacy in Ontario - Dr. Alpha Abebe and Rhonda C. George, McMaster UniversityEngaging deliberately: Exploring deliberation in two Canadian health systems - Joanna Massie, McMaster UniversityThe Epistemic Injustices of Public Engagement: When nothing is done to meet the demands of Nothing about Us without Us! - Dr. Genevieve Fuji Johnson, Simon Fraser University Followed by (the more interesting parts of!) our actual conversation with Katherine (Katie) Boothe (Associate Professor at McMaster in the Political Science department and a team member in the Public Engagement in Health Policy Project) and Alana Cattapan (Canada Research Chair in the Politics of Reproduction and Assistant Professor in the Department of Political Science at the University of Waterloo). We debrief on conference themes, share critical reflections and occasionally complain about the state of funding and support for community-engaged research. If you're interested in critical work on public engagement, this episode (along with the Dr. Michener's keynote) is an excellent summary of a stellar conference! ----------------- 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 [download transcript] Previous episodes mentioned: Health Policy Series: Transformative Public Engagement: Pitfalls, Possibilities and Promise – keynote by Dr. Jamila Michener November 29, 2022Health Policy Series: Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe November 17, 2022Health Policy Series: Deliberation, Democracy and Public Engagement, A Conversation with Kim McGrail September 15, 2022Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George June 16, 2022Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George June 7, 2022Discussing Failures in Participatory Research, with Lori Ross December 13, 2021 Conference links: Conference overviewVideos of Jamila Michener’s keynote and panel presentations by Alpha Abebe and Rhonda C. George, Joanna Massie, Genevieve Fuji Johnson Guest and supporter links: Katherine (Katie) Boothe on twitterAlana Cattapan on twitterPublic Engagement in Health Policy project
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    48 m
  • Transformative Public Engagement: Pitfalls, Possibilities and Promise - keynote by Dr. Jamila Michener (Health Policy Series)

    Transformative Public Engagement: Pitfalls, Possibilities and Promise - keynote by Dr. Jamila Michener (Health Policy Series)
    Nov 29 2022

    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 and to envision a way forward. Attendees explored questions such as, what does it mean to engage with communities ethically? How can researchers use new approaches to engagement to tackle contemporary health policy issues with communities? And what are the roots of mistrust between communities and researchers/policymakers?

    The day opened with Dr. Jamila Michener, Associate Professor of Government and Public Policy at Cornell University. In her keynote presentation, she shared enriching insights on public engagement at the intersections of power, poverty, public policy and racism. Transformative and impactful public engagement continues to be hindered by a range of problems from insufficient resources to structural disincentives. Research must not only seek to avoid tokenism, to meaningfully create space for people to participate; it must also be reflexive. Researchers have a critical role in radically transforming engagement by understanding how their positionality affects their work. They should begin their work by asking: who am I, what are my values, what is my position and role? This reflexivity is essential as it shapes the very research questions we ask and our rationale for engaging with communities. It is from this intersectional lens that Dr. Michener proposed the values of equity, dignity, and democracy as anchors for ethical public engagement.

    - Excerpt from a blog post written by Joanna Massie, Roma Dhamanaskar, and Rana Saleh

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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

    [download transcript]

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    Links:

    • Dr. Jamila Michener on twitter
    • Video of Dr. Michener’s keynote
    • Public Engagement in Health Policy project
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    47 m
  • Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe (Health Policy Series)

    Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe (Health Policy Series)
    Nov 17 2022

    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 (Redefining Legitimacy in Canadian Drug Assessment Policy? Comparing Ideas Over Time) seeks to understand how and when people's ideas of legitimacy change when lay members are added to otherwise 'expert only' committees. In this case, the context is Canadian drug assessment advisory committees, where a group of technical experts and lay members help to determine what pharmaceutical drugs should be covered by public drug insurance policies.

    Join us for this fascinating conversation exploring how public and patient engagement challenges pre-existing standards of what constitutes "good" scientific evidence, and how (unarticulated) differing rationales and goals for engagement can lead to frustration and disappointment.

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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

    [download transcript]

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    Guest links:

    • Katherine Boothe on twitter
    • Katherine Boothe's profile

    Mentioned in this episode:

    • (Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time
    • Public Engagement in Health Policy project
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    40 m
  • Deliberation, Democracy and Public Engagement: A Conversation with Kim McGrail (Health Policy Series

    Deliberation, Democracy and Public Engagement: A Conversation with Kim McGrail (Health Policy Series
    Sep 15 2022

    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 conceptual: their aim is to support researchers to better access health data for research from multiple sources and regions, while respecting local, regional and Indigenous rights, cultural practices and laws.

    Public engagement in this context may seem straightforward, but it's hardly so. In this episode, we talk through some of HDRN's challenges and opportunities related to understanding public concerns related to the collection, use and sharing of health data.

    Although we touch on some of the operational and technical details of HDRN's work, our primary focus is on the use of deliberation as an engagement approach. And how it's difficult to talk about engagement at a pan-Canadian level without also considering democratic ideals and how we might navigate living together as a diverse society.

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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

    [download transcript]

    Guest links:

    • Kim McGrail on twitter
    • Kim McGrail's profile

    Mentioned in this episode:

    • Health Data Research Network
    • HDRN Public Advisory Council
    • Paris Citizens' Assembly
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    46 m
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