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

Dilemmas of Representation, with Paula Rowland

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.

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Expertise Part 2, with Francine Buchanan

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.  

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Mentioned in this episode:

Francine Buchanan on Twitter
Frank Gavin on Twitter

Expertise Part 1, with Frank Gavin

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.

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Mentioned in this episode:

Frank Gavin on Twitter
Francine Buchanan on Twitter