”How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research project

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 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]

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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