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.
Episodes
Sunday Nov 01, 2020
Sunday Nov 01, 2020
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.
Sunday Oct 18, 2020
Sunday Oct 18, 2020
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:
Sunday Oct 04, 2020
Sunday Oct 04, 2020
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:
- Patient Partnership and COVID-19 Research - OSSU Patient Partners Working Group Webinar, July 9th 2020
- Stronger Together: Adapting Patient-Oriented Research During COVID-19 Podcast (and Webinar) Series
- Huron Perth Healthcare Alliance
- BC Patient Safety & Quality Council
- Hôtel-Dieu Grace Healthcare
- The Change Foundation
- The Ontario Caregiver Organization
Sunday Aug 30, 2020
Sunday Aug 30, 2020
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.
Sunday Aug 16, 2020
Sunday Aug 16, 2020
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:
Sunday Aug 02, 2020
Sunday Aug 02, 2020
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:
- McMaster University Public & Patient Engagement Collaborative
- McMaster University Public & Patient Engagement Collaborative - Products
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.
Sunday Jul 19, 2020
Sunday Jul 19, 2020
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:
- Patient partner compensation in research and health care: the patient perspective on why and how, Richards et al
- Medieval Healthcare and the Rise of Charitable Institutions: The History of the Municipal Hospital, by Tiffany A. Ziegler
- Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness, May et al
- Understanding the motivations of patients: A co‐designed project to understand the factors behind patient engagement, McCarron et al
Zal Press (Patient Commando) on Twitter
Dawn P. Richards on Twitter
Sunday Jul 05, 2020
Sunday Jul 05, 2020
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:
- Empowerment Council, a voice for the client of Centre for Addiction and Mental Health
- Peat, Marwick & Partners. (1982). Queen Street Mental Health Centre: An operational and organizational review. (Not widely available but can be accessed through the Toronto Reference Library.)
- Legislative Assembly of Ontario, Hansard debate, March 29 1982. Extensive discussion of the findings in the Peat Marwick report.
Sunday Jun 28, 2020
Sunday Jun 28, 2020
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:
- Dilemmas of representation: Patient engagement in health professions education
- more about recruitmentology: The Rise of Recruitmentology, by Steven Epstein
Tuesday Jun 16, 2020
Tuesday Jun 16, 2020
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:
- How do patients attain equal status if they’re seen as ‘non-expert’? by Francine Buchanan
- The risks of equating ‘lived experience’ with patient expertise by Frank Gavin
- In Part 1, Frank mentions a cartoon/meme (which Emily refers to in this episode) that describes a particular physician-patient dynamic. We couldn't find it in cartoon form but the idea was popularized in this tweet: https://twitter.com/trishgreenhalgh/status/1000308119115915264