On episode 4 of As PER Usual, we're talking about some of the efforts used to raise awareness of the importance of patient engagement in research, with two people who highlight the importance of engaging stakeholders in everything they do.

Rachel Martens is a Knowledge Broker with the University of Calgary, Kids Brain Health Network and CanChild. She has been a partner in health and policy research for almost 10 years. A writer and advocate, she has spoken all over the world about partnering in health research.

Dr. Christine (Tina) Fahim is a Scientist for the Knowledge Translation Program, St. Michael’s Hospital and leads the Team for Implementation, Evaluation and Sustainability (TIES), as well as an assistant professor at the University of Toronto, and an associate scientist at the Bloomberg School of Public Health, Johns Hopkins University. Her research focuses on the science and practice of knowledge translation to implement evidence-based interventions at the provider, organization, and health systems levels.

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On episode 3 of As PER Usual, a podcast for practical patient engagement, we're discussing evaluating how we engage patient partners - and how a rigid, standardized framework is NOT the answer - with three patient engagement evaluation experts who are hot off the publication of the "Learning Together Evaluation Framework for Patient and Public Engagement".

Audrey L'Espérance is Assistant Professor of Health and Social Services Management at the École nationale d'administration publique (ÉNAP) in Montreal, where she is pursuing a research program on the inclusion and integration of citizen and expert knowledge in decision-making in health and social services.

Mary Anne Levasseur is the Peer Coordinator, Caring Community Project, of the Canada Research Chair in Partnership with Patients and Communities, and a Citizen-Partner-Researcher team member of the Interdisciplinary Chair in Health and Social Services for Rural Populations, University of Quebec at Rimouski. She has extensive experience working with families and caregivers in peer support groups, and her interest in improving the healthcare experience is grounded in her role of caregiver and advocate for her son. 

Carolyn Canfield is a citizen-patient who volunteers across Canada and internationally to expand system partnerships with patients, carers and communities. Her work since 2008 earned her recognition as Canada’s first Patient Safety Champion and faculty appointment at the University of British Columbia. She actively partners in research here and abroad.

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On episode 2 of As PER Usual, a podcast for practical patient engagement, it's all about how patient partners are compensated - if at all! (And no, paying for parking to attend the meeting doesn't count!)

Our guests today are the dynamic duo of Grace Fox and Maureen Smith, who teamed up on Grace's recent Master's thesis to explore the current state of patient partner compensation guidance in the literature. In this episode, they discuss how researchers can champion patient partner compensation in their own research practices, and more broadly, within their current academic and clinical institutions.

Grace Fox is currently a Strategies for Patient-Oriented Research Assistant at the Ottawa Hospital Research Institute where she helps researchers and patient partners navigate patient engagement in health research. She recently graduated from the Master's of Science in Epidemiology program at the University of Ottawa where she focused her thesis on understanding the current landscape of patient partner compensation. Her thesis included 1) a systematic review to assess reporting of patient partner compensation and current practices, 2) a survey of researchers and institutions to identify challenges and barriers to compensation and 3) a scoping review to capture published guidance and policy around patient partner compensation. 

Maureen Smith has a long history of collaboration with the healthcare system subsequent to a rare disease diagnosis in childhood. She had the privilege to be a member of Grace’s thesis advisory committee as she explored compensation from an institutional and researcher perspective.

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Visit our Substack for a transcript and links to resources shared by our guests.

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Welcome to the very first episode of As PER Usual, a podcast for practical patient engagement. To start our journey, we have two wonderful guests, Dr. Dawn Richards and Dr. Stuart Nicholls, who - along with several other colleagues - published the "Ottawa model" for patient engagement. They share with the listeners how patient engagement can be embedded in our existing structures, and why it takes more than money to make patient engagement in research move from fiction to fact.

Dr. Stuart Nicholls is the Strategy for Patient-Oriented Research (SPOR) Program Facilitator in the Office for Patient Engagement in Research Activities (OPERA) at the Ottawa Hospital Research Institute. In his capacity as SPOR Program facilitator Stuart consults with researchers to provide methodological guidance regarding all aspects of Patient-Oriented Research.

With a PhD (Analytical Chemistry) from the University of Alberta, Dr. Dawn Richards has worked in a variety of roles over the past 20 years, however her diagnosis with rheumatoid arthritis over 15 years ago started a journey to combine her passion for science with making the most of her diagnosis. She has contributed to the literature and practice in patient engagement on compensation, authorship, recognizing patients as people with skills and who lead fulfilling lives, and training on patient engagement in research.

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As Anna and Bryn prepare to schedule the episodes for the show, they wanted to give space to some sad news about their friend and co-host, Roger.

If you have any questions, please reach out to us, at:

* Anna Chudyk: [email protected]

* Bryn Robinson: [email protected]

Let's make patient engagement the standard, or "As PER Usual"!

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Welcome to our prologue episode of our new show, As PER Usual: A Podcast for Practical Patient Engagement. In this episode, co-hosts Anna Chudyk, Bryn Robinson, and Roger Stoddard will introduce the format and plan for sharing the results of a recent research study on patient engagement through the world of podcasting!

If you have any questions, please reach out to us, at: Anna Chudyk: [email protected]; Bryn Robinson: [email protected]; and Roger Stoddard: [email protected]

And remember: Let's make patient engagement the standard, or "As PER Usual"!

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com