Shows
As PER UsualS2E9.5 - onePERspectiveWelp, it's a wrap folks! Welcome to the last episode of Season 2 of asPERusual and onePERspective. In this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR CHILD-BRIGHT. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR CHILD-Bright episode and learn more about engaging children, youth, and families in research.Episode Transcript:Hi everyone! Welcome back to onePERspective, a tri-weekly segment...2024-07-0911 min
As PER UsualS2E9 - Engaging Youth and Families: A Practical Discussion with the CHILD-BRIGHT NetworkOverviewIn this episode of asPERusual, host Anna Chudyk sits down with Carrie Costello, Annette Majnemer and Gillian Backlin from the CHILD-BRIGHT Network. Our discussion includes: * An overview of CHILD-BRIGHT, including its key activities and ways to get involved;* Different ways in which CHILD-BRIGHT is actively seeking to increase diversity within their network;* Practical considerations for engaging with youth and families in research - from initiating relationships to evaluating engagement work. * Tips for fostering authenticity, respect, and reciprocity, and creating environments where engagement can thrive. The CHILD-BRIGHT N...2024-07-011h 15
As PER UsualS2E8.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on Patient Advisor Network's Reimagining the Research Landscape report. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Reimagining the Research Landscape episode.Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith recaps the previous week’s episode of asPERusual – a podcast for pr...2024-06-1010 min
As PER UsualS2E8 - Patient partners weigh in on the future of patient-oriented researchOverviewIn this episode of asPERusual, host Anna Chudyk sits down with Alies Maybee and Donna Rubenstein from the Patient Advisors Network to discuss the recently published Reimagining the Research Landscape Report. This patient led-report examined ~200 patient partners’ perspectives on the future of patient-oriented research in Canada. Tune in to learn about the three main take-aways from the report, including:Changing the research landscape: What needs to occur at micro, meso, and macro levels to promote and support patient engagement in research;Growing the patient/caregiver partner community: Targeted and intentional outreach to op...2024-06-0351 min
As PER UsualS2E7.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Canadian Data Platform. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full SPOR Canadian Data Platform episode.Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podc...2024-05-2011 min
As PER UsualS2E7 - Engaging with your health dataEpisode overviewIn this episode of asPERusual, host Anna Chudyk sits down with representatives from the SPOR Canadian Data Platform to learn about the different ways the network is engaging Canadians in conversations about their health data. Key topics covered include:* the ways in which multi-regional data access contributes to a learning health system,* how health data can contribute to improvements in health and health equity,* ways in which the network engages Canadians in conversation about what they think about health data and its use and the types of health data...2024-05-1356 min
As PER UsualS2E6.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode of asPERusual focused on SPOR Diabetes Action Canada. Tune in to this short (~10 minute) episode, regardless of whether you want to compare reflections or get the Coles notes of the full Diabetes Action Canada episode. Episode Transcript:Anna:Hi everyone! Welcome back to onePERspective. A tri-weekly segment in which patient partner Kathy Smith shares a synopsis and key reflections from the previous week’s episode of asPERusual – a podcas...2024-04-2910 min
As PER UsualS2E6 - Listen to SPOR Diabetes Action CanadaEpisode overviewIn this episode of asPERusual, host Anna Chudyk sits down with Tracy McQuire and Linxi Mytkolli from Diabetes Action Canada to learn all about the different ways in which this Strategy for Patient-Oriented Research network is committed to improving the lives of persons living with diabetes. Highlights include in-depth discussions of:* the different ways in which Diabetes Action Canada brings together the 4 L’s (people with lived, loved, learned, and labored experience of diabetes) in finding a common language and space for them to work together to make better research, better policy, and be...2024-04-221h 00
As PER UsualS2E5.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR National Training Entity (NTE) Passerelle. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last weelk's episode or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you! Ep...2024-04-0810 min
As PER UsualS2E5 - Listen to SPOR Passerelle National Training EntityEpisode overviewEpisode overviewIn this episode, we are joined by Yvonne Pelling (the Patient and Community Engagement Lead) and Annie LeBlanc (the Nominated Principal Investigator / Scientific Director) of the Strategy for Patient-Oriented Research (SPOR) Passerelle National Training Entity (NTE). Through their engaging discussions, Yvonne and Annie help listeners re-examine what it means to build patient-oriented research capacity among academic researchers, patient partners, and institutions. As a fun bonus, they also explain the meaning of the word “Passerelle” (*hint* it’s related to the imagery in the episode's thumbnail image).Meet our guestsY...2024-04-0138 min
As PER UsualS2E4.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith offers a short recap and her key takeaways from last week's episode focused on the SPOR Chronic Pain Network. She also leaves you with "points to ponder," including her vision for the future of Canadian patient engagement in research based on her personal experiences and all we've heard in Season 2 to date. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (~10 minute) segment is for you! As a heads...2024-03-1810 min
As PER UsualS2E3.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith provides a short recap and her key takeaways from last week's episode describing the SPOR Evidence Alliance. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (2024-02-2610 min
As PER UsualS2E2.5 - onePERspectiveIn this feature segment of asPERusual, guest listener and patient partner Kathy Smith provides a short recap and her key takeaways from last week's episode exploring EMPaCT's meaningful and purposeful approach to equity, diversity, and inclusion in patient engagement in research. Whether you haven’t yet listened to last week’s episode, or you have and are interested in hearing someone else’s take on it, this short (2024-02-0608 min
As PER UsualS2E1.5 - OnePERspectiveIn this season of asPERusual we're trying out a new biweekly segment called onePERspective. In this segment, a guest listener will share their individual (or one) PERspective on the previous week’s episode in the form of a short recap of the episode and their key takeaways. All views expressed are their own. So this week, tune in to check out Kathy Smith's onePERspective on last week's episode titled Patient engagement in research funding: Learnings from the Canadian Cancer Society. And be sure to leave a comment or email me at anna.asperusual@gmail.com to share your PERspective on...2024-01-2307 min
As PER UsualS2E1 - Listen to Patient Engagement in Research Funding: Learnings from the Canadian Cancer SocietyMeet our guestsDon Wood was a caregiver for his late wife Sherry who battled Stage 4 metastatic colon cancer for 3 years. He also lost his only brother Ken to leukemia as a young adult. Don focuses his time now when not golfing or skiing working and volunteering his time primarily in cancer research for several provincial and national health care organizations including the Canadian Cancer Society. He recently co-authored “Co-Creation of a patient engagement strategy in cancer research funding” with the Canadian Cancer Society.Judit Takacs (she/her) is the senior manager for partnerships and enga...2024-01-1553 min
As PER UsualEpisode 7: The Work Has to be Relational: Fostering Engagement-Supportive Academic EnvironmentsIn our study, we heard from participants that traditional academic culture is not designed to support patient engagement, let alone effective patient engagement. So how do we make progress in patient engagement when we're swimming against such a massive current?To help us answer this, we have two great guests today!Isabel Jordan draws expertise from her experience navigating systems as a disabled parent of two disabled young adults. Isabel both partners in research projects and helps researchers and organizations to partner with patients in a safe, relational way.Dr. Christine Chambers is...2023-10-0253 min
As PER UsualEpisode 6: Creating a World of Wonder: Supporting Capacity Building in Patient EngagementWelcome to our world of wonder...or rather, episode 6 on As PER Usual, where we talk about building capacity in patient engagement. Can you learn it from a book or a webinar, or is there another way to teach yourself meaningful patient engagement? To answer our questions, we once again connected with two experts on the matter.Yvonne Pelling is a dedicated caregiver and advocate who passionately pursues her love of learning. Presently, she is the patient and community engagement lead at PASSERELLE. Her work focuses on training and capacity building, educational design, mentorship, and creating healthy...2023-09-1849 min
As PER UsualEpisode 5: Moving Forward, from Triage and Task Lists, Together.Episode 5 on As PER Usual, we're talking about processes, the need to move forward from checklists to checking in with each other, and the courage needed to build something better together. Dr. Karine Toupin-April is an associate professor at the University of Ottawa and affiliate scientist at the Children’s Hospital of Eastern Ontario Research Institute and the Institut du savoir Montfort. She has research expertise in chronic disease management and shared decision making. Laurie Proulx has lived with Juvenile Rheumatoid Arthritis since she was 14 years old and the disease impacted all aspects of life, li...2023-09-041h 04
As PER UsualEpisode 4: It's Not a Field of Dreams - It's More: Raising Awareness of Patient Engagement.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...2023-08-2145 min
As PER UsualEpisode 3: A Game of Snakes and Ladders: Evaluating the Engagement of Patients in ResearchOn 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...2023-08-071h 03
As PER UsualEpisode 2: Sixty-Five Guidance Documents Later... Compensating Patient Partners in ResearchOn 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.2023-07-2344 min
As PER UsualEpisode 1: It Starts with Leaders: Integrating Patient Engagement into Our SystemsWelcome 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...2023-07-101h 01