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Workshop: Perspectives on patient-partnered research.

Track 1
Saturday, September 5, 2020
2:00 PM - 3:30 PM
Auditorium - Track 1


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Mr Rob Wudlick
Clinical Project Manager
University Of Minnesota

Perspectives on patient-partnered research


Integrated Knowledge Translation (IKT) is the meaningful engagement of the right research users, at the right time, throughout the spinal cord injury (SCI) research process. In patient-partnered research, patients are equitable partners—as opposed to research subjects—who leverage their lived experience and expertise to influence research to be more patient centred, relevant, and useful. [1] People with lived experience of SCI (often referred to as consumers) have a broad range of experiences and skills that can add value to SCI research. Engaging consumers as co-researchers in the research process is an increasingly popular health research approach promoted by funding agencies.

This workshop will bring together the perspectives of funders, researchers, consumers and clinicians to explore the reasoning behind this novel way of undertaking SCI research. We will explore the reasons funders are demanding it and how to write funding proposals that resonate with their requirements, look at the evidence in literature showing how it has been successfully undertaken, discuss how people living with SCI can contribute to research and how to effectively and meaningfully engage them, and how consumer input can help inform clinical research and practice.

John Chernesky will provide an overview of current funders requiring partnered research and discuss what evidence funders are looking for in grant proposals to show that an effective and meaningful engagement plan has been developed. (20 minutes)

Dr. Femke Hoekstra will summarize the findings from her review of reviews and scoping review of partnered research, which identified an extensive set of principles, strategies, outcomes, and impacts. The findings from these reviews were used to co-develop the first IKT guiding principles for conducting and disseminating research in partnership with the SCI community. (20 mins)

Rob Wudlick will showcase good common practices and experiences of consumer engagement in research and healthcare. Key areas include benefits of consumer engagement, how to find engaged consumers, good practices of consumer engagement, and experiences of consumer engagement. (20 mins)

Dr. Andrei Krassioukov will demonstrate how engagement has informed his and his student’s work as a clinician researcher. An early adopter of engaged research, Dr. Krassioukov has utilized this methodology extensively and will explain how it can be conducted in real-world settings and discuss some of the challenges, benefits and learnings he has discovered throughout his career. (20 mins)

The workshop will conclude with a panel Q+A with all presenters. (10 mins)

This introductory workshop is suitable for anyone interested in learning more about undertaking patient-partnered research. It is expected that attendees will learn:
• Why funders are more often requiring grant proposals be submitted as patient-partnered research
• What funders are looking for to demonstrate effective and meaningful engagement will occur
• What evidence of benefit there is to support undertaking patient- partnered research
• What principles and strategies can guide their work in engaging people with SCI
• Where to go when seeking patient-partners
• How to meaningfully engage people living with SCI
• Practical application of these techniques in real-world settings

[1] https://www.pcori.org/engagement/value-engagement


John Chernesky is the Consumer Engagement Lead at the Praxis Spinal Cord Institute. With over 25 years of living with a spinal cord injury (SCI), John has participated in many research studies in addition to being a co-investigator on a number of research projects. His connection to the local SCI community as well as an international network of people living with SCI brings local, national and international consumer perspective to the SCI research field. He is recognized as a leader in engagement and integrated knowledge translation and has delivered numerous presentations on these subjects at meetings and conferences around the world. Dr. Femke Hoekstra completed her PhD at the University of Groningen, in which she focused on the nationwide implementation of a physical activity promotion program in Dutch rehabilitation care. In 2017, she started her postdoctoral research with Dr. Gainforth and Prof. Dr. Martin Ginis at the University of British Columba. Her research focuses on understanding and improving knowledge translation processes by studying the process of engaging community members into the SCI research process. Rob Wudlick, a consumer advocate for SCI research, and lives with a C4 SCI. Rob is a cofounder of GUSU2Cure Paralysis and is a Research Project Manager at the University of Minnesota’s Department of Rehabilitation Medicine. He is also an engineer for AbiliTech Medical. Dr. Andrei Krassioukov is currently a Professor at the Division of Physical Medicine and Rehabilitation, and Associate Director and a Scientist at ICORD at the University of British Columbia. He is a Physician at the SCI program at the GF Strong Rehabilitation Centre in Vancouver. He is Chair of the International Autonomic Standards Committee for American Spinal Injury Association and International Spinal Cord Society (ASIA/ISCoS). He has more than 290 peer-reviewed publications. Prof. Krassioukov is President of American Spinal Injury Association (ASIA).