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The Ontario Center of Excellence for Child and Youth Mental Health is an organization that supports the child and youth mental health sector through a number of initiatives and services. Their approach to developing and delivering that support is done in active collaboration with young people and their families. In healthcare spaces, we often see engagement practice as something separate, maybe adjacent, to everyday operations. But here, youth and family involvement is deeply embedded. Kelli Dilworth is a Knowledge Broker at the Center. She's responsible for supporting agencies and their engagement efforts, and implementing quality standards for youth and family engagement. For this episode, we've put aside the ins and outs of Kelli's job per se, and instead wanted to share her reflections and insights about her role - the rewards and frustrations that come with both her official responsibilities and the personal obligations and commitments she feels to the young people that she works with. It really is a tightrope - and Kelli's honesty and openness help us get a better understanding. [download transcript] Mentioned in this episode: Ontario Center of Excellence for Child and Youth Mental Health Ontario Center of Excellence for Child and Youth Mental Health on Twitter  Also, join Matters of Engagement, SPORcast and PEP Talks for a live collaboration event on February 2 for a session titled "Podcasting and Patient Engagment"! Details and registration here.

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.) [download transcript] Mentioned in this episode: Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-Oriented Research Child-Bright Network Ethics Guidance for Developing Partnerships with Patients and Researchers The Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER) Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2018) Reading that challenges common understandings about the role of REBs: The Ethics Rupture: Exploring Alternatives to Formal Research-Ethics Review How did we ever get into this Mess? The Rise of Ethical Regulation in the Social Sciences Regulating Creativity: Research and Survival in the IRB Iron Cage Against Research Ethics Committees "We need more critical thinking in clinical bioethics if patient autonomy is what we seek" 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.

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." [download transcript] Mentioned in this episode: The Story Center SPORcast on twitter PEP Talks on twitter

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

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).  [download transcript] Claire Snyman on twitter Marika Sandrelli on twitter SPORcast on twitter PEP Talks on twitter

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.  [download transcript] Mentioned in this episode: Vagueness, Power and Public Health: Use of ‘Vulnerable’ in Public Health Literature La Langue de Coton: How Neoliberal Language Pulls the Wool over Faculty Governance Bringing stakeholders together for urban health equity: hallmarks of a compromised process Amy Katz on Twitter

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 The Patient Experience Library on Twitter

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. [download transcript]

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. [download transcript] Mentioned in this episode: SKIP - Solutions for Kids in Pain SKIP on Twitter Katie Birnie on Twitter

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. [download transcript] 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 Julie Drury on Twitter Christa Haanstra on Twitter

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]

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.  [download transcript] Aman Sium on Twitter Related links: Holland Bloorview's Family Leadership Program

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.    [download transcript]   Julia Abelson on Twitter   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.    

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! [download transcript] 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

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.  [download transcript] 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

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. [Download transcript] Mentioned in this episode: Dilemmas of representation: Patient engagement in health professions education more about recruitmentology: The Rise of Recruitmentology, by Steven Epstein Paula Rowland on Twitter

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.   [Download transcript] 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 Francine Buchanan on Twitter Frank Gavin on Twitter

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. [Download transcript] Mentioned in this episode: The risks of equating ‘lived experience’ with patient expertise by Frank Gavin How do patients attain equal status if they’re seen as ‘non-expert’? by Francine Buchanan In Part 1, Frank mentions a cartoon/meme 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 Frank Gavin on Twitter Francine Buchanan on Twitter

Welcome to Matters of Engagement - a podcast exploring the complex world of patient engagement and partnership. Full episodes will be released starting July 1 June 16 2020. In this short trailer, meet your hosts Jennifer and Emily.