Matters of Engagement

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 t...

It's been a while since we've published an episode!  We have lots on the go these days. Come hang out with Jen and Em as we wrap up the Health Policy series and share what's next.

[download transcript]

Mentioned in this episode:

• Public Engagement in Health Policy Project
• Supporting equity-centred engagement - A step-by-step guide with tailored resources
• Matters of Engagement presents "Podcasting for Knowledge Translation" web...

A widely-held assumption is that all residents of Long-term Care (LTC) homes are frail, elderly and in need of sweeping protections as determined by government, policy-makers and LTC home management. The reality, however, is that residents of LTC homes comprise a diverse demographic and have a wide range of needs, interests and concerns. And across the spectrum of needs, residents have a strong desire to participate in key decision...

We're bringing conference vibes to the podcast and presenting a short series of critical work on public engagement from members of the Public Engagement in Health Policy team.  We noted themes of: community exclusion from formal engagement processes; misalignment of goals; questions of legitimacy; and challenges of conducting community-engaged research in institutional settings. 

We already published the keynote from Dr. Jamila Mic...

On September 22, 2022, the Public Engagement in Health Policy project team at McMaster University hosted a one-day conference, Reimagining public engagement in a changing world. Community members, engagement practitioners, researchers, and policymakers gathered virtually and in person to discuss the opportunities and pitfalls of public engagement and to envision a way forward. Attendees explored questions such as, what does it mean...

What makes an engagement process legitimate?  How do technical experts feel about engagement, and how have their ideas of legitimacy changed over time?  These are just some of the questions we explore with our guest, Katherine (Katie) Boothe, Associate Professor in the Political Science Department at McMaster University.

A recent paper of Katie's (Redefining Legitimacy in Canadian Drug Assessment Policy? Comparing Ideas Over Time) ...

Kim McGrail is the Scientific Director of Health Data Research Network, a CIHR funded initiative whose work in the health data space has implications for, well, everyone living in Canada. And they're keen to involve the public not just in getting input, but in providing guidance into key decisions.  HDRN's work is both technical and somewhat conceptual: their aim is to support researchers to better access health data for research f...

In previous episodes we've talked a lot about high-level rationales for engagement, like democratic principles and moral or ethical obligations. But we haven't really got into some of the operational nuts and bolts, like the fact that there's a whole fee-for-service industry out there - agencies hired by healthcare organizations to support engagement strategy and activities.

Join us for this behind-the-scenes look at what engagemen...

In this episode, we continue our conversation with Alpha Abebe and Rhonda C. George!  (Haven't heard the first conversation yet? Listen here!) This time, we talk about Black communities' response to COVID, and public health response to Black communities.

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

During a public health crisis is the exact wrong time to try and build relationships and trust with communities who have not historically been included in health ...

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 Bl...

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 Impa...

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 o...

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 d...

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 ...

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 ...

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 intereste...

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 comparative...

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 ...