Matters of Engagement mattersofengagement

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 episode01:20 Jennifer's experience as an extreme caregiver02:20 Right to flourish, caregiving through a bioethics lens03:34 Caregiving and choice04:38 Disability is seen as a personal or family tragedy05:18 Accessing and managing support can be burdensome06:09 Extreme caregiving has an opportunity cost06:51 Financial precarity and gender08:09 What does society prefer to support?08:50 Caregiving as unpaid labour keeps caregivers in financial dependency10:01 Policy considerations and conclusion of talk11:11 Jennifer and Emily have a candid discussion!15:18 Advocacy vs. organizational agendas16:59 Caregiving can be fulfilling and also has a cost. Extreme caregiving is rarely a choice18:47 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 caregiving29:04 Putting some choice back into challenging circumstances35:35 Moral arguments for policy makers36:53 Caregiving policies potentially impact everyone40:29 Navigating care responsibilities as a family or partnership44:53 "Performing" for therapists46:39 Shared decision-making and patient/family priorities49:18 Jen and Emily reflect on how little they've talked about Jennifer's experiences with Owen51:14 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

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 solo01:06 About this research project02:05 What’s an ”innovative clinical trial”?04:00 Dr. Noah Ivers’ research objectives06:15 Why this project was complex09:34 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 someone18:03 Barbara: Engaged patients are like liaisons20:01 Patients should do what interests them21:28 Reflecting on constraints22:29 Barbara: Patient advisors should not be ”partners”24:41 Figuring things out as they go25:44 What did the Advisors actually do?30:34 Michael: Opioids are not inherently bad32:24 Barbara: I get a lot of benefit from being an LEA35:03 Reflections on Emily’s role, as Lead Advisor38:08 Who decides what’s relevant (re patient input)?39:05 Why research teams might want a Lead Advisor40:29 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]
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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 is
Video: Improving antibiotic prescribing by reducing antibiotic use, duration of therapy and drug costs
Webinar: Advancing Audit and Feedback Science and Antibiotic Stewardship in Primary Care
Guest links:
Dr. Noah Ivers profile
Dr. Noah Ivers on twitter
Celia Laur PhD profile
Celia Laur on twitter
Previous episodes featuring patient partner views:
Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021
Policy Development in a Pandemic: is there a Role for Patient Partners? With Julie Drury and Christa Haanstra October 5, 2020
Reflections on Engagement, with Lo

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
 

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

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 University
Engaging deliberately: Exploring deliberation in two Canadian health systems - Joanna Massie, McMaster University
The 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!
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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]
 
Previous episodes mentioned:
Health Policy Series: Transformative Public Engagement: Pitfalls, Possibilities and Promise – keynote by Dr. Jamila Michener November 29, 2022
Health Policy Series: Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe November 17, 2022
Health Policy Series: Deliberation, Democracy and Public Engagement, A Conversation with Kim McGrail September 15, 2022
Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George June 16, 2022
Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George June 7, 2022
Discussing Failures in Participatory Research, with Lori Ross December 13, 2021
Conference links:
Conference overview
Videos 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 twitter
Alana Cattapan on twitter
Public Engagement in Health Policy project

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