Matters of Engagement – Details, episodes & analysis

We're doing something a little bit different! We're taking a shot at making video along with the podcast! You can watch this episode on our YouTube channel, or as always, you can listen in your favorite podcast app.

This episode has two parts. We're first going to feature a short talk Jennifer gave at the Canadian Caregiving Summit in Ottawa a few weeks ago, which was specifically focused on her experiences as an extreme caregiver, trying to earn a living.

After that short recording - which is about 10 minutes - tune in to Jennifer and Emily's conversation about advocacy, policy, and choice.

In this episode:

00:00 What to expect in this episode 01:20 Jennifer's experience as an extreme caregiver 02:20 Right to flourish, caregiving through a bioethics lens 03:34 Caregiving and choice 04:38 Disability is seen as a personal or family tragedy 05:18 Accessing and managing support can be burdensome 06:09 Extreme caregiving has an opportunity cost 06:51 Financial precarity and gender 08:09 What does society prefer to support? 08:50 Caregiving as unpaid labour keeps caregivers in financial dependency 10:01 Policy considerations and conclusion of talk 11:11 Jennifer and Emily have a candid discussion! 15:18 Advocacy vs. organizational agendas 16:59 Caregiving can be fulfilling and also has a cost. Extreme caregiving is rarely a choice 18:47 How do we differentiate between regular parenting/caregiving and 'extreme' caregiving? 27:06 The amount of work that goes into managing and administering everything that goes along with extreme caregiving 29:04 Putting some choice back into challenging circumstances 35:35 Moral arguments for policy makers 36:53 Caregiving policies potentially impact everyone 40:29 Navigating care responsibilities as a family or partnership 44:53 "Performing" for therapists 46:39 Shared decision-making and patient/family priorities 49:18 Jen and Emily reflect on how little they've talked about Jennifer's experiences with Owen 51:14 Jen and Emily acknowledge that caregivers don't all have the same opportunities, experiences, or perceptions

[download transcript]

Summit links:

• Canadian Caregiving Summit
• Jennifer's session at the Summit
• Azrieli Foundation

What exactly is the best way to engage patients in a healthcare research project? Well, it's hard to say definitively. Funders like CIHR often require patient involvement, but very little direction is provided beyond general frameworks and guiding principles. Often project teams just have to sort things out on their own. So we were curious to find out how this one particular healthcare research project handled it. 

The details of the project are not really what this episode is about. Instead, our intention is to showcase a number of different perspectives about the use of patient partners within a federally funded healthcare research project. You're going to hear from two of the project's researchers (PI Dr. Noah Ivers and Celia Laur), two patient partners (Barbara Sklar and Michael Strange) - they actually call themselves Lived Experience Advisors, or LEAs - and our very own Emily Nicholas Angl, who helped to bridge communication between the two groups.

In this episode:

00:17 Why Jen is hosting solo 01:06 About this research project 02:05 What’s an ”innovative clinical trial”? 04:00 Dr. Noah Ivers’ research objectives 06:15 Why this project was complex 09:34 Should patient partners do more technical work? 10:42 What are we asking patients to do? 13:20 Barbara: Engaging patients is like the Wild West! 15:57 Michael: Sharing my experience may help someone 18:03 Barbara: Engaged patients are like liaisons 20:01 Patients should do what interests them 21:28 Reflecting on constraints 22:29 Barbara: Patient advisors should not be ”partners” 24:41 Figuring things out as they go 25:44 What did the Advisors actually do? 30:34 Michael: Opioids are not inherently bad 32:24 Barbara: I get a lot of benefit from being an LEA 35:03 Reflections on Emily’s role, as Lead Advisor 38:08 Who decides what’s relevant (re patient input)? 39:05 Why research teams might want a Lead Advisor 40:29 Are there areas where patient input is less relevant? 43:01 Jennifer interviews Emily! 01:07:35 Ending and credits

About the research project:

The project (the results of which are not yet published) and is an "innovative clinical trial", which means that it uses methods alternative to more traditional randomized controlled trials. The research had two streams, both related to primary care - one focused on prescribing opioids, and one on prescribing antibiotics. Both of these are areas where there can be serious impacts at the individual patient level, but also in terms of public health more broadly. And particularly with opioids,. defining exactly what appropriate prescribing looks like is really tricky. And primary care physicians aren't always aware of, or maybe just aren't following, the most recent evidence-based guidelines. So this project explored if and how some specific interventions could shift prescribing behavior towards established best practices.

We will continue to update the links on our website as publications and further information becomes available. 

[download transcript]

------------------------------

Research project information:

• Project lay summary (PDF)
• Patient Partner Orientation presentation (PDF)
• Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Innovative Clinical Trials Initiative (iCT)

Research background information and context:

• The Opioid Chapters: 11 stories that show how complex the crisis is
• Video: Improving antibiotic prescribing by reducing antibiotic use, duration of therapy and drug costs
• Webinar: Advancing Audit and Feedback Science and Antibiotic Stewardship in Primary Care

Guest links:

• Dr. Noah Ivers profile
• Dr. Noah Ivers on twitter
• Celia Laur PhD profile
• Celia Laur on twitter

Previous episodes featuring patient partner views:

• Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021
• Policy Development in a Pandemic: is there a Role for Patient Partners? With Julie Drury and Christa Haanstra October 5, 2020
• Reflections on Engagement, with Lorraine, Maureen, Keith and Jess August 30, 2020
• Expertise Part 2, with Francine Buchanan June 16, 2020

In this episode, we continue our Health Policy series with guests Alpha Abebe and Rhonda C. George.

Alpha and Rhonda's research foregrounds Black community experiences and insights related to health policy engagement. We're featuring their work over two back-to-back episodes. This episode focuses on the engagement work of Black communities. Our guests want to "flip the script," shifting away from a deficit model of understanding Black community engagement.

The follow up episode features Alpha and Rhonda's research on Black community engagement during COVID, and includes discussion on why they think it's valuable for Black researchers to be doing this kind of work.

Alpha and Rhonda are members of the Public Engagement in Health Policy team based at McMaster University, which aims to strengthen health policymaking in Canada by providing a platform for interdisciplinary scholarship, education and leadership in public engagement.  This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

[download transcript]

Guest links:

Alpha Abebe

• • Profile
  • on twitter

Rhonda C. George

• • Publications
  • on twitter

Related links:

• Unpacking the ‘Public’ in Public Engagement: In Search of Black Communities
• Failure to include Black communities in health policy public engagement perpetuates health disparities

Mentioned in this episode:

• Interview Extra: Advocacy and Health Equity, feat. Biba Tinga of the Sickle Cell Disease Association of Canada 
• Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud
• Public Engagement in Health Policy Project 
• The Future of Canada Project

We're back! We're excited to get rolling on this new series on Health Policy!  We have a range of questions we want to explore, including: who is involved in making policy, and how are public needs identified? How is public engagement defined? And who is included or excluded?

We're kicking off the series with a conversation with Julia Abelson. Julia is a professor at McMaster University in the Department of Health Evidence and Impact and an associate member in the Department of Political Science.  She has a special research interest in public engagement in health system governance, and the analysis of the determinants of health policy decision making.

Julia's been on the podcast before (Evaluating Patient Engagement) and this time around, she's back to talk about the Public Engagement in Health Policy project, based at McMaster.

We reconnected with Julia to chat about some of the early insights learned in the project so far. One of the research themes in the project is Looking Back, reflecting on the evolution of engagement practices and health policy and seeing what can be learned from past experiences.

In this episode, Julia shares her insights related to trends in engagement in health policy, and also discusses one of the project's first outputs - a case survey of government-initiated public engagement in health policy.

This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

[download transcript]

Guest links:

• Julia Abelson on twitter
• Julia Abelson at McMaster
• PPE Collaborative
• Previous episode with Julia

Mentioned in this episode:

• Public Engagement in Health Policy Project 
• Trends in Public Engagement in Canadian Health Policy from 2000-2021: Results from a Comparative Descriptive Analysis
• The Future of Canada Project 

Just a quick check in to say hello and share what's next! 

[download transcript]

For this final episode of Season 3, we want to acknowledge the Ontario SPOR SUPPORT Unit for supporting us to get this project off the ground and establish a solid foundation for critical dialogue about patient engagement and partnership. So we're turning things over to members of OSSU's Patient Partner Working Group: Annette McKinnon, Bilqis Williams, and honourary member, Stuart Nicholls. We invited them to share their thoughts on patient partnership today, and where they think it's heading.

Stay tuned, more to come!!

[download transcript]

Guests:

• Annette McKinnon (linkedin, twitter)
• Bilqis Williams (linkedin, twitter, instagram)
• Stuart G. Nicholls (Ottawa Methods Centre, twitter)

Mentioned in this episode:

• Ontario SPOR SUPPORT Unit
• Ottawa Methods Centre
• IC/ES
• Strategy for Patient-Oriented Research
• OMERACT
• Patient Advisors Network

Additional music and production support provided by Angus Turney

Our guest Mark Weir is a seasoned engagement professional working in healthcare. Typically, engagement-related communities of practice tend to focus on things like best practices and 'how to' - not so much on the emotional toll it can take to fully engage in the work. In a recent IAP2 Canada workshop, Mark explored the effects of "moral distress", which he defines as feeling stuck and wanting to do the right thing but constrained due to systemic or institutional barriers - which are beyond the engagement professional's control. We spoke to Mark about the experience of carrying these kinds of burdens, which can go unseen or unacknowledged.

Not only did we get to delve deeper into the experience of engagement work - this was also an opportunity to take a closer look at the context of engagement in general. What are some possible causes of this distress? And what does it say about the overall project of patient engagement? 

In this episode, we hear from Mark about the challenges faced by engagement professionals (in healthcare) due to moral distress, and then later in the episode, we try to sort through some of the bigger, confounding questions that seem to follow us from episode to episode!

[download transcript]

Guest:

• Mark Weir, Director of Strategic Planning and Community Engagement, Woodstock Hospital (Ontario)
  • Mark on twitter
  • Mark's profile on LinkedIn

Mentioned in this episode:

• Our previous episodes featuring engagement professionals:
  • Expertise Part 2, with Francine Buchanan
  • Evaluating Holland Bloorview’s Family Leadership Program, with Aman Sium 
  • Lived Experience, with Katherine Dib and Katie Birnie of SKIP
  • Walking a Tightrope: Inside the Engagement Professional Role, with Kelli Dilworth
• IAP2 Canada website
• First definition of moral distress in nursing - Jameton, A., Nursing Practice: The ethical issues. Prentice Hall Series in the Philosophy of Medicine, ed. G. S1984, Englewood Cliffs, NJ: Prentice Hall.
• Mark Weir's IAP2 Canada workshop slides - Weighing on Our Shoulders: Moral Distress and Compassion Fatigue in Engagement Professionals

Additional music and production support provided by Angus Turney

Most of our episodes have been about engagement in institutional healthcare spaces - places like hospitals or research institutes. But of course, there are a multitude of other places where patient or service user engagement takes place. 

Our guests are Jenn Broad and Paula Tookey. They work out of the South Riverdale Community Health Center in East Toronto. Jenn is the Program Manager of Harm Reduction and Hep C. And Paula is the Manager of Keep Six, a consumption and treatment service, which is a health service described as a place where people inject, snort, or orally consume pre-obtained drugs in a safe, hygienic and welcoming environment under the supervision of trained staff. 

As you listen, we encourage you to tune in to their insights specific to engagement within a community that experiences persistent stigma and systemic discrimination. What we learned from talking to Jenn and Paula is that engagement in certain health related community services, like harm reduction programs, has different and possibly higher stakes for the people involved than what we typically think of as "patient engagement" in mainstream or organizational health services.

[download transcript]

Guests:

• Jenn Broad, Program Manager of Harm Reduction and Hep-C, South Riverdale Community Health Centre
• Paula Tookey, Manager of Keep Six Consumption and Treatment Service, South Riverdale Community Health Centre

Mentioned in this episode:

• South Riverdale Community Health Centre
• From client to co-worker: a case study of the transition to peer work within a multi-disciplinary hepatitis c treatment team in Toronto, Canada

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.