Research Ethics Boards and Patient Partnership

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.)

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Mentioned in this episode:

Reading that challenges common understandings about the role of REBs:

Panelist Profiles:

  • Elizabeth Stephenson is a Professor of Pediatrics at the University of Toronto and the Section Head of Cardiac Electrophysiology at The Hospital for Sick Children. Her research focus on electrophysiology has led to clinical investigations in cardiac resynchronization- and implantable defibrillator therapies. Additionally, she serves as the Chair of the SickKids’ Research Ethics Board.
  • Franco Carnevale is a nurse, psychologist and clinical ethicist with research interests in pediatric ethics. In addition to a number of academic appointments at McGill, he is the founder and principal investigator for VOICE (Views On Interdisciplinary Childhood Ethics) to advance knowledge and practices relating to ethical concerns in childhood.
  • Gillian Backlin is a technical writer, an active member of CHILD-BRIGHT’s National Youth Advisory Panel, and a Patient and Family Ambassador Liaison  at the  BC Children’s Hospital’s Sunny Hill Health Centre.
  • Antonia Palmer is actively involved in the realm of pediatric oncology. In addition to being the co-founder of the Advocacy for Canadian Childhood Oncology Research Network, she founded Neuroblastoma Canada, and is a board member for Childhood Cancer Canada. She also chairs the Patient and Family Advisory Committee of the CHEER (Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research) initiative which aims to streamline and improve the research ethics review process to enhance and expedite child health research across Canada.
  • Thierry Lacaze-Masmonteil is child health and wellness researcher. He is a Professor of Pediatrics at the university of Calgary and is the section head of Neonatology at the Cumming School of Medicine. Additionally, he serves as the scientific director of MICYRN – the Maternal Infant Child Youth Research Network and is a co-principal investigator on the aforementioned CHEER initiative.

Engaging in Storytelling, Part 3: “Creating Spaces for Storytellers” – produced by PEP Talks

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.”

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Mentioned in this episode:

SPORcast on twitter
PEP Talks on twitter

Engaging in Storytelling, Part 2: “Organizations and Patient Stories” – produced by Matters of Engagement

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. 

[download transcript]

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

Engaging in Storytelling, Part 1: “The Patient Story Experience – Cost or Benefit?” by SPORcast

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 (Claire Snyman) and a Trauma Informed Practice expert (Marika Sandrelli) 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). 

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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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Mentioned in this episode:

Amy Katz on Twitter

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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Mentioned in this episode:

The Patient Experience Library on Twitter

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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Mentioned in this episode:

SKIP on Twitter
Katie Birnie on Twitter

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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Mentioned in this episode:

Julie Drury on Twitter
Christa Haanstra on Twitter

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.

[download transcript]