Vagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton Ninomiya

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. 

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Patient Experience as Evidence, with Miles Sibley

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. 

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Hosts Jennifer and Emily learn to “let go of perfection”

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.

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Lived Experience, with Katherine Dib and Katie Birnie of SKIP

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

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Policy Development in a Pandemic: is there a Role for Patient Partners? With Julie Drury and Christa Haanstra

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.

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Reflections on Engagement, with Lorraine, Maureen, Keith and Jess

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.

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Evaluating Holland Bloorview’s Family Leadership Program, with Aman Sium

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. 

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Evaluating Patient Engagement – A Conversation with Julia Abelson

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. 

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Julia Abelson on Twitter

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 studyHealth Expectations22(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 designHealthcare Quarterly, 21:61-67.



Compensation, with Zal Press and Dawn P. Richards

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!

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Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy – with Lucy Costa

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. 

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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. (A link will be made available if we can locate one!)

Lucy Costa on Twitter