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
Dec 16, 2020
Dec 16, 2020
54 min
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:
- Kumagai, Arno K., MD A Conceptual Framework for the Use of Illness Narratives in Medical Education, Academic Medicine: July 2008 - Volume 83 - Issue 7 - p 653-658 doi: 10.1097/ACM.0b013e3181782e17
- Kumagai, Arno K. MD; Naidu, Thirusha PhD Reflection, Dialogue, and the Possibilities of Space, Academic Medicine: March 2015 - Volume 90 - Issue 3 - p 283-288 doi: 10.1097/ACM.0000000000000582
Daniel Z. Buchman on twitter
SPORcast on twitter
PEP Talks on twitter
Dec 15, 2020
Dec 15, 2020
42 min
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).
Nov 22, 2020
Nov 22, 2020
36 min
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:
Nov 8, 2020
Nov 8, 2020
36 min
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:
- The Patient Experience Library
- Report download: Inadmissible Evidence
- Independent Medicines and Medical Devices Safety Review (referred to in our episode as "the Cumberlege report")
- GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research
Nov 1, 2020
Nov 1, 2020
23 min
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.
Oct 18, 2020
Oct 18, 2020
49 min
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:
Oct 4, 2020
Oct 4, 2020
48 min
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
Aug 30, 2020
Aug 30, 2020
30 min
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.
Aug 16, 2020
Aug 16, 2020
38 min
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:
Aug 2, 2020
Aug 2, 2020
35 min
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.