Interview Extra: Advocacy and Health Equity, feat. Biba Tinga of the Sickle Cell Disease Association of Canada

Our guest, Biba Tinga, is President and Executive Director of the Sickle Cell Disease Association of Canada.

We initially spoke with Biba to ask for her reflections on the Equity and Diversity episode with Nav Persaud. But once we started talking, we realized that Biba’s experience as an advocate was almost a perfect case study of what we’ve been talking about – the importance of focusing on health equity, as opposed to comparatively simple notions of diversity. So even though this episode is an extension of the Patient Partner Reflections segment in the previous episode, it also gets into some of the realities of advocating for policy change to support the health needs of a racialized group – one that is disproportionately affected by a rare disease, and is not well supported by our Canadian health care system.

Sickle cell disease is an inherited blood disorder. And according to Health Canada, it can shorten the life of affected individuals by more than 30 years. It’s caused by abnormally shaped red blood cells that can impair blood flow, causing strokes, lung disease and organ damage. In Canada, around 5000 people live with sickle cell disease, and it most commonly affects people of African descent, as well as Caribbean, Latin or South American, Middle Eastern and South Asian descent.

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Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud

There’s increasing pressure on government and healthcare institutions to address barriers to health equity, which disproportionately impact people who experienced systemic racism, and other disadvantage or mistreatment. And these barriers have always existed. But awareness has been heightened lately in the public consciousness by news coverage of recent world events. And we’re now hyper-aware of race related health disparities and inequities, unequal access to health care for people who experience systemic disadvantage, and the lack of support for the health of indigenous peoples. Governments and healthcare organizations are under intense scrutiny for how they handle equity, health equity and diversity. And the stakes are really high.

So what does this have to do with patient engagement and partnership? Well, we think a lot. The goals of these programs include improving health equity and equitable access to health care for everyone. And the belief is that diversity among engaged patients – diversity representative of the people in Canada – is critical to helping achieve these goals. One of the problems is that engaged patients are mostly middle class, white, and female. There are exceptions of course, but there is a long way to go. So to help achieve desired levels of diversity, there’s a lot of focus on recruitment, outreach and accessibility, all in an effort to attract people from underrepresented groups.

We’ve been keen to talk through some of these ideas and assumptions as we think there are some interesting tensions to unpack. So we contacted our guest, Dr. Nav Persaud, for perspective and insight. We hope you find our discussion as illuminating as we did!

This episode also includes a recorded submission from Vina Mohabir in our new segment, “Patient Partner Reflections”, brought to you by OSSU

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Webinar Extra: Paula Rowland presents Dilemmas of Representation for BPER

On October 12 2021, Emily and Jennifer moderated an online presentation featuring Paula Rowland. Paula was a guest way back in Season One, discussing a paper she co-authored with Arno Kumagai, called Dilemmas of Representation. We wanted to post the session here because it revisits and also builds on the themes in the original paper.

This presentation was part of a series called Best Practice in Education Rounds, co-sponsored through the Center for Faculty Development, The Wilson Centre, and the Centre for Interprofessional Education at the University of Toronto. 

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Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges

In this first episode of Season 3, we go back to basics. What does “patient-oriented” (as in patient-oriented research) actually mean?  To answer this and other questions, we’re joined by Vasanthi Srinivasan, Executive Director of the Ontario SPOR SUPPORT Unit, and Maureen Smith, Chair of OSSU’s Patient Partner Working Group and member of OSSU’s Board of Directors. (OSSU is a generous financial supporter of this podcast.)

Vasanthi outlines the hopes and dreams of the patient-partnership movement, sharing the vision for a culture change and acknowledging that there’s still a way to go.  Maureen shares her perspective as a long-time patient partner, providing a frank account of the possibilities – and challenges – of partnering in research.  

Join us for these two illuminating conversations in which we discuss the aspirations, implications and challenges in moving towards a “patient-partnered” future.  

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Webinar Extra: Podcasts and Patient Engagement

We’re busy preparing for our next season. But in the meantime, we have a fun episode to share with you! It’s the recording of the webinar we did in collaboration with our friends at PEP Talks and SPORcast, in January 2021. It was a live session called “Podcasts and Patient Engagement” and features Paul Fairie and Sandra Zelinsky of PEP Talks, Bev Pomeroy of SPORcast, and Jennifer Johannesen and Emily Nicholas Angl, hosts of Matters of Engagement. We each talk about our respective podcast projects, why and how we got started, ideas about sustainability, how we approach our topics and much more.

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Walking a Tightrope: Inside the Engagement Professional Role, with Kelli Dilworth

**Last episode of Season 2! See you soon! ** 

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.

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Mentioned in this episode:

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.

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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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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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. 

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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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