Matters of Engagement (mattersofengagement)
Explorez tous les épisodes de Matters of Engagement
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| 16 Dec 2020 | Engaging in Storytelling, Part 2: "Organizations and Patient Stories" - produced by Matters of Engagement | 00:54:47 | |
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 platforms. This is the 2nd of 3, and it’s produced by us! Organizations and Patient Stories Our guests are Carol Fancott (Director of Patient Partnerships and Engagement at the newly amalgamated organization that's brought together the Canadian Foundation for Healthcare Improvement and Canadian Patient Safety Institute) and Daniel Z. Buchman (Bioethicist and Independent Scientist at the Center for Addiction and Mental Health, Assistant Professor at the Dalla Lana School of Public Health at the University of Toronto, and member of the University of Toronto Joint Center for Bioethics). Carol shares her thoughts on patient stories and storytelling based on the subject of her PhD, which is: how organizations use patient stories for learning. We talk about ‘spectating’, control and power, using dialogue to enhance learning, and how stories are just one input of many when it comes to understanding patient experience. Dan then helps us think through some of the moral and ethical implications about what organizations are asking of patients when it comes to telling their story. Mentioned in this episode:
Daniel Z. Buchman on twitter SPORcast on twitter PEP Talks on twitter | |||
| 12 Jan 2021 | Research Ethics Boards and Patient Partnership | 00:33:19 | |
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, Franco Carnevale, Gillian Backlin, Antonia Palmer, Thierry Lacaze-Masmonteil. Profiles below.) In this episode, Jennifer and Emily pick up one of the discussion threads to consider whether there might be a role for Research Ethics Boards (REBs) in supporting meaningful patient partnership. (The video recording of the original Zoom event is openly available. You can watch it here. In the session we covered so much more than we were able to address! It's not required in order to enjoy this episode, but we do encourage everyone to watch.) Mentioned in this episode:
Reading that challenges common understandings about the role of REBs:
Panelist Profiles:
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| 26 Jul 2022 | The Business and Politics of Engagement, with John Perenack of StrategyCorp (Health Policy Series) | 00:49:16 | |
In previous episodes we've talked a lot about high-level rationales for engagement, like democratic principles and moral or ethical obligations. But we haven't really got into some of the operational nuts and bolts, like the fact that there's a whole fee-for-service industry out there - agencies hired by healthcare organizations to support engagement strategy and activities. Join us for this behind-the-scenes look at what engagement-for-hire looks like. What is the work that's involved? And how does a strategic consulting firm advise on or think about engagement? Is any of this actually useful or meaningful, or does it only fulfill some kind of strategic or tactical purpose? We attempt to get to the bottom of these questions with John Perenack, of StrategyCorp. John is a communications specialist who often supports clients in developing public and stakeholder engagement strategies and activities. We're excited to bring you this fascinating and illuminating conversation! ----------------- 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 Guest links: Mentioned in this episode: News coverage of the Windsor hospital location conflict
Previous episodes mentioning "hard to reach" | |||
| 20 Jul 2020 | Compensation, with Zal Press and Dawn P. Richards | 00:45:04 | |
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 long-time patient partners on both organizational committees and health research projects. In this fascinating exploration with Zal and Dawn, we talk through some big ideas: patients conceptualized as part of the healthcare workforce; the historical roots of healthcare as a faith-based charitable enterprise; how patient partners are shouldering the burden for having awkward conversations about compensation; that compensation doesn't fix communication issues... and so much more! Mentioned in this episode:
Zal Press (Patient Commando) on Twitter Dawn P. Richards on Twitter | |||
| 17 Nov 2022 | Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe (Health Policy Series) | 00:39:36 | |
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. ----------------- 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 ----------------- Guest links: Mentioned in this episode:
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| 25 Nov 2021 | Interview Extra: Advocacy and Health Equity, feat. Biba Tinga of the Sickle Cell Disease Association of Canada | 00:34:30 | |
Our guest, Biba Tinga, is President and Executive Director of the Sickle Cell Disease Association of Canada. We initially spoke with Biba to ask for her reflections on the Equity and Diversity episode with Nav Persaud. But once we started talking, we realized that Biba's experience as an advocate was almost a perfect case study of what we've been talking about - the importance of focusing on health equity, as opposed to comparatively simple notions of diversity. So even though this episode is an extension of the Patient Partner Reflections segment in the previous episode, it also gets into some of the realities of advocating for policy change to support the health needs of a racialized group - one that is disproportionately affected by a rare disease, and is not well supported by our Canadian health care system. Sickle cell disease is an inherited blood disorder. And according to Health Canada, it can shorten the life of affected individuals by more than 30 years. It's caused by abnormally shaped red blood cells that can impair blood flow, causing strokes, lung disease and organ damage. In Canada, around 5000 people live with sickle cell disease, and it most commonly affects people of African descent, as well as Caribbean, Latin or South American, Middle Eastern and South Asian descent. Guests:
Mentioned in this episode: | |||
| 03 Jan 2024 | Caregiving and Work | 00:55:29 | |
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 Summit links: | |||
| 08 Nov 2020 | Patient Experience as Evidence, with Miles Sibley | 00:36:40 | |
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, a discounting of patient voice that is pervasive throughout healthcare and which they link directly to avoidable harm to patients. They point to a double standard which takes medical research seriously, while dismissing the experiences of patients as "anecdotal". Jennifer and Emily speak with Miles Sibley of the Library, and connect the Library's overall mission with one of the goals of "patient engagement" here in Canada - to amplify the patient voice - and patient experience - and to have it taken seriously by medicine and healthcare. Mentioned in this episode:
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| 07 Jun 2022 | ”Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George (Health Policy Series) | 00:39:52 | |
In this episode, we continue our Health Policy series with guests Alpha Abebe and Rhonda C. George. Alpha and Rhonda's research foregrounds Black community experiences and insights related to health policy engagement. We're featuring their work over two back-to-back episodes. This episode focuses on the engagement work of Black communities. Our guests want to "flip the script," shifting away from a deficit model of understanding Black community engagement. The follow up episode features Alpha and Rhonda's research on Black community engagement during COVID, and includes discussion on why they think it's valuable for Black researchers to be doing this kind of work. Alpha and Rhonda are members of the Public Engagement in Health Policy team based at McMaster University, which aims to strengthen health policymaking in Canada by providing a platform for interdisciplinary scholarship, education and leadership in public engagement. 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 Guest links: Alpha Abebe Rhonda C. George Related links:
Mentioned in this episode: | |||
| 16 Nov 2021 | Equity, Diversity, and Patient Engagement - with Dr. Nav Persaud | 00:58:35 | |
There's increasing pressure on government and healthcare institutions to address barriers to health equity, which disproportionately impact people who experienced systemic racism, and other disadvantage or mistreatment. And these barriers have always existed. But awareness has been heightened lately in the public consciousness by news coverage of recent world events. And we're now hyper-aware of race related health disparities and inequities, unequal access to health care for people who experience systemic disadvantage, and the lack of support for the health of indigenous peoples. Governments and healthcare organizations are under intense scrutiny for how they handle equity, health equity and diversity. And the stakes are really high. So what does this have to do with patient engagement and partnership? Well, we think a lot. The goals of these programs include improving health equity and equitable access to health care for everyone. And the belief is that diversity among engaged patients - diversity representative of the people in Canada - is critical to helping achieve these goals. One of the problems is that engaged patients are mostly middle class, white, and female. There are exceptions of course, but there is a long way to go. So to help achieve desired levels of diversity, there's a lot of focus on recruitment, outreach and accessibility, all in an effort to attract people from underrepresented groups. We've been keen to talk through some of these ideas and assumptions as we think there are some interesting tensions to unpack. So we contacted our guest, Dr. Nav Persaud, for perspective and insight. We hope you find our discussion as illuminating as we did! This episode also includes a recorded submission from Vina Mohabir in our new segment, "Patient Partner Reflections", brought to you by OSSU. Guests: Mentioned in this episode: | |||
| 20 Dec 2021 | Engagement in Context: Reflections from Jenn Broad and Paula Tookey of the South Riverdale Community Health Centre | 00:27:11 | |
Most of our episodes have been about engagement in institutional healthcare spaces - places like hospitals or research institutes. But of course, there are a multitude of other places where patient or service user engagement takes place. Our guests are Jenn Broad and Paula Tookey. They work out of the South Riverdale Community Health Center in East Toronto. Jenn is the Program Manager of Harm Reduction and Hep C. And Paula is the Manager of Keep Six, a consumption and treatment service, which is a health service described as a place where people inject, snort, or orally consume pre-obtained drugs in a safe, hygienic and welcoming environment under the supervision of trained staff. As you listen, we encourage you to tune in to their insights specific to engagement within a community that experiences persistent stigma and systemic discrimination. What we learned from talking to Jenn and Paula is that engagement in certain health related community services, like harm reduction programs, has different and possibly higher stakes for the people involved than what we typically think of as "patient engagement" in mainstream or organizational health services. Guests:
Mentioned in this episode: | |||
| 10 Jun 2020 | Meet the hosts! | 00:06:38 | |
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. | |||
| 17 Dec 2020 | Engaging in Storytelling, Part 3: "Creating Spaces for Storytellers" - produced by PEP Talks | 00:37:06 | |
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 platforms. This is the last of 3, and it’s produced by PEP Talks! Creating Spaces for Storytellers Guest: Amy Hill, Silence Speaks Director, Story Center US "In this episode of PEP Talks, Amy Hill from the Story Center US talks a little bit about the history, methodology, impact and provides some examples of Digital Story Telling in the context of public health and health research." Mentioned in this episode: | |||
| 04 Oct 2020 | Policy development in a pandemic - is there a role for patient partners? With Julie Drury and Christa Haanstra | 00:48:06 | |
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 dropped entirely. It's a widely held view that if patients and caregivers had been involved in policy-making early on, the focus on 'patient and family centered care' wouldn't have gotten lost, and the tragic exclusion of family caregivers wouldn't have happened in the way it did. Our guests, Julie Drury and Christa Haanstra, share with us their impressions and insights as to where things might have gone wrong, and how things could go better as COVID-19 continues to impact visitation for family members and caregivers. Mentioned in this episode:
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| 29 Mar 2022 | Season 3 Finale: Patient Partner Reflections, brought to you by OSSU | 00:45:40 | |
For this final episode of Season 3, we want to acknowledge the Ontario SPOR SUPPORT Unit for supporting us to get this project off the ground and establish a solid foundation for critical dialogue about patient engagement and partnership. So we're turning things over to members of OSSU's Patient Partner Working Group: Annette McKinnon, Bilqis Williams, and honourary member, Stuart Nicholls. We invited them to share their thoughts on patient partnership today, and where they think it's heading. Stay tuned, more to come!! Guests:
Mentioned in this episode:
Additional music and production support provided by Angus Turney | |||
| 25 Jan 2021 | Walking a Tightrope: Inside the Engagement Professional Role, with Kelli Dilworth | 00:25:58 | |
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 here, youth and family involvement is deeply embedded. Kelli Dilworth is a Knowledge Broker at the Center. She's responsible for supporting agencies and their engagement efforts, and implementing quality standards for youth and family engagement. For this episode, we've put aside the ins and outs of Kelli's job per se, and instead wanted to share her reflections and insights about her role - the rewards and frustrations that come with both her official responsibilities and the personal obligations and commitments she feels to the young people that she works with. It really is a tightrope - and Kelli's honesty and openness help us get a better understanding. Mentioned in this episode:
Also, join Matters of Engagement, SPORcast and PEP Talks for a live collaboration event on February 2 for a session titled "Podcasting and Patient Engagment"! Details and registration here. | |||
| 17 Aug 2020 | Evaluating Holland Bloorview's Family Leadership Program, with Aman Sium | 00:38:59 | |
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. Related links: | |||
| 16 Jun 2020 | Expertise Part 1, with Frank Gavin | 00:25:27 | |
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. Mentioned in this episode:
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| 19 May 2022 | Health Policy Series Kick-off!: A retrospective look at public engagement, with Julia Abelson | 00:27:05 | |
We're back! We're excited to get rolling on this new series on Health Policy! We have a range of questions we want to explore, including: who is involved in making policy, and how are public needs identified? How is public engagement defined? And who is included or excluded? We're kicking off the series with a conversation with Julia Abelson. Julia is a professor at McMaster University in the Department of Health Evidence and Impact and an associate member in the Department of Political Science. She has a special research interest in public engagement in health system governance, and the analysis of the determinants of health policy decision making. Julia's been on the podcast before (Evaluating Patient Engagement) and this time around, she's back to talk about the Public Engagement in Health Policy project, based at McMaster. We reconnected with Julia to chat about some of the early insights learned in the project so far. One of the research themes in the project is Looking Back, reflecting on the evolution of engagement practices and health policy and seeing what can be learned from past experiences. In this episode, Julia shares her insights related to trends in engagement in health policy, and also discusses one of the project's first outputs - a case survey of government-initiated public engagement in health policy. 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 Guest links: Mentioned in this episode: | |||
| 15 Dec 2020 | Engaging in Storytelling, Part 1: "The Patient Story Experience - Cost or Benefit?" by SPORcast" | 00:42:50 | |
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 platforms. This is the first of 3, and it’s produced by our friends at SPORCast: The Patient Story Experience: Cost or Benefit? In this episode, Bev hosts a conversation between an activated Patient Partner and a Trauma Informed Practice expert on patient storytelling; which is quite often the entry point of patient engagement in healthcare. We hope you enjoy it! If you’re listening in order, The Matters of Engagement episode is up next (Wednesday), followed by PEPTalks (Thursday). | |||
| 19 Oct 2021 | Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges | 00:47:05 | |
In this first episode of Season 3, we go back to basics. What does "patient-oriented" (as in patient-oriented research) actually mean? To answer this and other questions, we're joined by Vasanthi Srinivasan, Executive Director of the Ontario SPOR SUPPORT Unit, and Maureen Smith, Chair of OSSU's Patient Partner Working Group and member of OSSU's Board of Directors. (OSSU is a generous financial supporter of this podcast.) Vasanthi outlines the hopes and dreams of the patient-partnership movement, sharing the vision for a culture change and acknowledging that there's still a way to go. Maureen shares her perspective as a long-time patient partner, providing a frank account of the possibilities - and challenges - of partnering in research. Join us for these two illuminating conversations in which we discuss the aspirations, implications and challenges in moving towards a "patient-partnered" future. Guests: Links to organizations mentioned in this episode:
References provided by Maureen Smith: | |||
| 13 Apr 2022 | Onwards and upwards: Jen and Emily check in | 00:03:18 | |
Just a quick check in to say hello and share what's next! | |||
| 18 Oct 2020 | Lived Experience, with Katherine Dib and Katie Birnie of SKIP | 00:49:15 | |
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 a wider view on engagement generally, we contemplate the ins and outs of the term 'lived experience' and consider its value to healthcare organizations. Our guests are Katherine Dib and Katie Birnie of SKIP - Solutions for Kids in Pain. SKIP is a knowledge mobilization network which helps to translate and disseminate research and information about pediatric pain, to a variety of potential knowledge users including families, physicians, researchers, and policy-makers. Katherine is SKIP's Patient Engagement Coordinator, a role reserved for someone with lived experience of pediatric pain, and Katie is SKIP's Assistant Scientific Director. *Correction: In this episode we misidentify SKIP's funder as CIHR. SKIP is funded by the Networks of Centres of Excellence. Mentioned in this episode: | |||
| 15 Dec 2022 | Critical Reflections on Public Engagement (Health Policy Series) | 00:47:55 | |
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:
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
Previous episodes mentioned:
Conference links:
Guest and supporter links: | |||
| 13 Jul 2023 | ”How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research project | 01:08:41 | |
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. ------------------------------ Research project information:
Research background information and context:
Guest links: Previous episodes featuring patient partner views:
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| 04 Mar 2021 | Webinar Extra: Podcasts and Patient Engagement - with SPORcast, PEP Talks and Matters of Engagement | 01:18:54 | |
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, hosts of Matters of Engagement. We each talk about our respective podcast projects, why and how we got started, ideas about sustainability, how we approach our topics and much more. | |||
| 29 Nov 2022 | Transformative Public Engagement: Pitfalls, Possibilities and Promise - keynote by Dr. Jamila Michener (Health Policy Series) | 00:46:31 | |
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 ----------------- 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 ----------------- Links:
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| 03 Aug 2020 | Evaluating Patient Engagement, A Conversation with Julia Abelson | 00:35:04 | |
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 engagement who also partners with patients... it's a minefield of quandaries but Julia navigates the work with reflexivity, empathy, and a commitment to helping both researchers and patient partners do the best they can.
Related links:
Related publications: Abelson J, Tripp L, Kandasamy S, Burrows K, on behalf of the PPEET Implementation Study Team. (2019). Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study. Health Expectations, 22(5): 1132-1143.
Abelson J, Humphrey A, Syrowatka A, Bidonde J, Judd M. (2018). Evaluating patient, family and public engagement in health services improvement and system design. Healthcare Quarterly, 21:61-67.
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| 23 Nov 2020 | Vagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton Ninomiya | 00:36:13 | |
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 Jennifer and Emily think through ideas of power, obfuscation, accountability, and whether we're all just spinning our wheels...by design. Mentioned in this episode: | |||
| 16 Jun 2020 | Expertise Part 2, with Francine Buchanan | 00:26:53 | |
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. Mentioned in this episode:
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| 02 Nov 2020 | Hosts Jennifer and Emily learn to "let go of perfection" | 00:23:06 | |
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. | |||
| 28 Nov 2021 | We‘re looking for patient partner stories and experiences! | 00:01:36 | |
Hi there – Jennifer here! We know everyone’s busy this time of year, so just a quick announcement! We’re looking for some short contributions for an upcoming episode. The one we’re working on examines some of the challenges of conducting participatory research in an academic or institutional setting. So… if you’ve been involved in a participatory research project as a patient partner, we’d love to hear from you! We’re interested in your perspective. How was the experience for you? And how was it different or similar to other research projects? We’re also interested in whether there were any institutional or bureaucratic policies or processes that impeded the project in some way. If you’re interested in being included in an upcoming episode, there are a few ways to contribute. Maybe the easiest way is to call in to our new listener phone line - the number is 647-812-2909. Just have a listen to the instructions. You can re-record as needed, and just call back if you need a do-over. You can also send us a written email, or record a voice memo and email it to us. The address is mattersofengagement@gmail.com. All of these details are also on our website – just click the Contact page at mattersofengagement.com And hey, even if you don’t want to contribute to this episode, we always love feedback! Please send us your comments on any episode, or suggest a topic. Thanks for listening, and we’d love to hear from you.
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| 06 Jul 2020 | Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy - with Lucy Costa | 00:30:14 | |
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 funded by the Centre for Addiction and Mental Health in Toronto. In this episode, we speak with Lucy Costa, Deputy Executive Director, to learn more about patient councils, to understand how democratic patient-led organizations decide what to advocate for, and to find out where advocacy and engagement intersect. This is a rich conversation that also explores the differences between advocacy and engagement. Lucy provides compelling testimony that there is pressure on patient councils to shift away from advocacy towards engagement, which, in her view, compromises their ability to push for system change. Mentioned in this episode:
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| 16 Feb 2023 | Beyond Mandates: The Essential Input of Residents in Long-term Care Policy (Health Policy Series) | 00:48:28 | |
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. —————– 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
Guest links: Previous episodes related to "lived experience as expertise"
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| 31 Aug 2020 | Reflections on Engagement, with Lorraine, Maureen, Keith and Jess | 00:30:12 | |
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 gratitude, frustration, and everything in between - and to hear from a researcher/MD what she's learning as she wraps up her PhD on PPI. Join hosts Jennifer and Emily as they parse through their guests' reflections and try to figure out what's next. | |||
| 15 Sep 2022 | Deliberation, Democracy and Public Engagement: A Conversation with Kim McGrail (Health Policy Series | 00:45:35 | |
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. ----------------- 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
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| 13 Jun 2023 | Spring Update 2023: Checking in with Jen and Em | 00:08:51 | |
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.
Mentioned in this episode:
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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| 29 Jun 2020 | Dilemmas of Representation, with Paula Rowland | 00:22:55 | |
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, and explains why we may encounter trouble when there’s a mismatch of expectations. Mentioned in this episode:
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| 02 Nov 2021 | Webinar Extra: Paula Rowland presents Dilemmas of Representation for BPER | 00:35:20 | |
On October 12 2021, Emily and Jennifer moderated an online presentation featuring Paula Rowland. Paula was a guest way back in Season One, discussing a paper she co-authored with Arno Kumagai, called Dilemmas of Representation. We wanted to post the session here because it revisits and also builds on the themes in the original paper. This presentation was part of a series called Best Practice in Education Rounds, co-sponsored through the Center for Faculty Development, The Wilson Centre, and the Centre for Interprofessional Education at the University of Toronto. Webinar: Guests: Links to the organizers:
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| 13 Dec 2021 | Discussing Failures in Participatory Research, with Lori Ross | 00:41:33 | |
We initially invited Lori Ross on the podcast to discuss the PEERS (Peers Examining Experiences in Research) Study - a 2 yr federally funded research project looking at the experiences of peer researchers with lived experience in communities that face structural oppression in Canada, including mental health service users, people who use drugs, trans and non-binary communities, and racialized communities. Not only was the project team studying peer researchers, but they employed peer researchers (as research assistants) as well. In our conversation, we discussed this research project, the findings of which are still to be written up. However, the conversation also revealed that the research team was concurrently studying what they saw as failures in the study while they were conducting the research, and that they plan to write up those reflections as well. We're excited to bring you this conversation with Lori Ross, the principal investigator, who shares with us some of the ins and outs of studying a process while simultaneously doing the work... and some of the project team's insights into why their participatory research project experienced failures. Added to the experiential piece is their theoretical framing, which is sure to shed light on why participatory research conducted in the context of a large institution may indeed be "doomed to fail" when it comes to power sharing and other social justice aims. Guests:
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| 03 Feb 2022 | Moral Distress in Engagement Professionals, with Mark Weir | 00:42:24 | |
Our guest Mark Weir is a seasoned engagement professional working in healthcare. Typically, engagement-related communities of practice tend to focus on things like best practices and 'how to' - not so much on the emotional toll it can take to fully engage in the work. In a recent IAP2 Canada workshop, Mark explored the effects of "moral distress", which he defines as feeling stuck and wanting to do the right thing but constrained due to systemic or institutional barriers - which are beyond the engagement professional's control. We spoke to Mark about the experience of carrying these kinds of burdens, which can go unseen or unacknowledged. Not only did we get to delve deeper into the experience of engagement work - this was also an opportunity to take a closer look at the context of engagement in general. What are some possible causes of this distress? And what does it say about the overall project of patient engagement? In this episode, we hear from Mark about the challenges faced by engagement professionals (in healthcare) due to moral distress, and then later in the episode, we try to sort through some of the bigger, confounding questions that seem to follow us from episode to episode! Guest:
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Additional music and production support provided by Angus Turney | |||
| 16 Jun 2022 | Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George (Health Policy Series) | 00:36:17 | |
In this episode, we continue our conversation with Alpha Abebe and Rhonda C. George! (Haven't heard the first conversation yet? Listen here!) This time, we talk about Black communities' response to COVID, and public health response to Black communities. ----------------- During a public health crisis is the exact wrong time to try and build relationships and trust with communities who have not historically been included in health policy decision making, and whose health and health care needs continued to be neglected. But this, of course, doesn't mean that Black communities didn't recognize both the real danger posed by COVID, or their own tenuous connection to mainstream health services. Alpha and Rhonda share how leaders of Black-led organizations rallied to address community needs during COVID, and discuss the importance of supporting Black communities to build capacity and resilience for the future. ----------------- Alpha Abebe is an Assistant Professor in the Faculty of Humanities at McMaster University, and Rhonda C. George is a PhD candidate in Sociology at York University. They're both researchers with the Public Engagement in Health Policy Project. 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 Guest links: Alpha Abebe Rhonda C. George Related links:
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