About the Patient Preferences to Value Health Outcomes in Rheumatology Clinical Trials (PPRCTs) Working Group

Researchers, patients, clinicians and policy-makers need to make certain trade-offs when making treatment decisions. These trade-offs include treatment safety, cost, duration, and effectiveness. Understanding patient preferences for these trade-offs is critical to making sure that the evidence we generate and use is relevant for the patients and physicians who have to make these choices every day.

Our work will provide foundational knowledge regarding the most appropriate and feasible methods researchers can use to measure patient preferences to inform clinical trial design and interpretation. We will first review the published literature to understand how and when these methods may be used. We will then engage relevant stakeholders including patients, doctors and researchers to understand their perspectives. Through our OMERACT Special Interests Group, we will work with relevant stakeholders, and use our research to develop a ‘handbook’ on how and when to use these methods. This handbook will be used to help walk researchers through these methods and will form the basis for future research to use these methods in real-world applications.It is important to do this research because it will support the use of patient values when designing clinical trials. This will help ensure that evidence on treatments applies to the patients who will be using them. Though we are working within rheumatologywith this group,our results could be applicableto other specialties.

Nick Bansback

Nick Bansback

Co-Chair

Annelies

Annelies Boonen

Co-Chair

Rachelle Buchbinder

Rachelle Buchbinder

Co-Chair

Liana Fraenkel

Liana Fraenkel

Co-Chair

Glen Hazelwood

Glen Hazlewood

Co-Chair

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Megan Thomas

Fellow

Laurie Proulx

Laurie Proulx

Patient Research Partner

Pam Richards

Pam Richards

Patient Research Partner

Marieke Scholte-Voshaar

Marieke Scholte-Voshaar

Patient Research Partner

Dawn Richards

Patient Research Partner

PPRCTs Whiteboard Overview

OMERACT 2020 Virtual PPRCTs Special Interest Group Session

Working Group Members:

Glen Hazlewood
Rachelle Buchbinder
Annelies Boonen
Nick Bansback
Liana Fraenkel
Marieke Voshaar
Laurie Proulx

Dawn Richards
Pamela Richards
Megan Thomas
Deborah Marshall
Francis Guillemin
Mickael Hiligsmann
Adewale O Adebajo

Mark Harrison
Kerrie-Anne Ho
Sarah Mackie
Diana Hollander
Marie Falahee
Peter Tugwell
Bev Shea

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