WORKING GROUP NAME: PATIENT PREFERENCES TO VALUE HEALTH OUTCOMES IN RHEUMATOLOGY CLINICAL TRIALS (PPRCTs)

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.

CO-CHAIRS

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Nick Bansback:

nick.bansback@ubc.ca

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Annelies Boonen:

a.boonen@mumc.nl

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Rachelle Buchbinder:

rachelle.buchbinder@monash.edu

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Liana Fraenkel:

liana.fraenkel@yale.edu

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Glen Hazelwood:

glenhazlewood@gmail.com

FELLOW

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Megan Thomas

PRP

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Laurie Proulx

PRP's

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Pam Richards

PRP

Dawn Richards

PRP

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Marieke Scholte-Voshaar

MEMBERSHIP:

Glean Hazelwood
Nick Bansback
Liana Fraenkel
Adewale O Adebajo
Diana Hollander

Annelies Boonen
Rachelle Buchbinder
Megan Thomas
Peter Tugwell
Marie Falahee
Mark Harrison

Francis Guillemin
Mickael Hiligsmann
Deborah Marshall
Sarah Mackie
Kerrie-Anne Ho