Matters of Engagement

We initially invited Lori Ross on the podcast to discuss the PEERS  (Peers Examining Experiences in Research) Study - a 2 yr federally funded research project looking at the experiences of peer researchers with lived experience in communities that face structural oppression in Canada, including mental health service users, people who use drugs, trans and non-binary communities, and racialized communities.  Not only was the project team studying peer researchers, but they employed peer researchers (as research assistants) as well. 

In our conversation, we discussed this research project, the findings of which are still to be written up. However, the conversation also revealed that the research team was concurrently studying what they saw as failures in the study while they were conducting the research, and that they plan to write up those reflections as well.

We're excited to bring you this conversation with Lori Ross, the principal investigator, who shares with us some of the ins and outs of studying a process while simultaneously doing the work... and some of the project team's insights into why their participatory research project experienced failures. 

Added to the experiential piece is their theoretical framing, which is sure to shed light on why participatory research conducted in the context of a large institution may indeed be "doomed to fail" when it comes to power sharing and other social justice aims.

[download transcript]

Guests:

• Lori Ross on twitter
• Lori Ross' profile (Dalla Lana School of Public Health at the University of Toronto)

Mentioned in this episode:

• PEERS study web page

Hi there – Jennifer here! We know everyone’s busy this time of year, so just a quick announcement!  We’re looking for some short contributions for an upcoming episode.  The one we’re working on examines some of the challenges of conducting participatory research in an academic or institutional setting.   So… if you’ve been involved in a participatory research project as a patient partner, we’d love to hear from you! We’re interested in your perspective. How was the experience for you? And how was it different or similar to other research projects? We’re also interested in whether there were any institutional or bureaucratic policies or processes that impeded the project in some way.

If you’re interested in being included in an upcoming episode, there are a few ways to contribute. Maybe the easiest way is to call in to our new listener phone line - the number is 647-812-2909.  Just have a listen to the instructions. You can re-record as needed, and just call back if you need a do-over.  You can also send us a written email, or record a voice memo and email it to us. The address is mattersofengagement@gmail.com. 

All of these details are also on our website – just click the Contact page at mattersofengagement.com

And hey, even if you don’t want to contribute to this episode, we always love feedback!  Please send us your comments on any episode, or suggest a topic.

Thanks for listening, and we’d love to hear from you.

 

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.

[download transcript]

Guests:

• Biba Tinga on twitter
• Sickle Cell Disease Association of Canada on Facebook
• Sickle Cell Disease Association of Canada on twitter

Mentioned in this episode:

• Interview with Biba Tinga

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. 

[download transcript]

Guests:

• Nav Persaud's profile
• Nav Persaud on twitter
• Vina Mohabir on twitter

Mentioned in this episode:

• "Fairness is Excellence", OSSU's Equity Framework

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. 

[download transcript]

Webinar:

• Youtube video of this presentation

Guests:

• Paula Rowland on Twitter
• Paula's previous podcast episode

Links to the organizers:

• Centre for Faculty Development
• The Wilson Centre
• Centre for Interprofessional Education at the University of Toronto

 

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.  

[download transcript]

Guests:

• Vasanthi Srinivasan
• Maureen Smith

Links to organizations mentioned in this episode:

• Ontario SPOR SUPPORT Unit
• Canadian Institutes of Health Research
• Strategy for Patient-Oriented Research
• US National Institutes of Health

References provided by Maureen Smith:

• Patient Centricity in Patient Preference Studies: The Patient Perspective
• Patient and family engagement in the development of core outcome sets for two rare chronic diseases in children

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.

[download transcript]

• Matters of Engagement on twitter
• SPORcast on twitter
• PEP Talks on twitter

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