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
Co-Chair
Annelies Boonen
Co-Chair
Rachelle Buchbinder
Co-Chair
Liana Fraenkel
Co-Chair
Glen Hazlewood
Co-Chair
Megan Thomas
Fellow
Laurie Proulx
Patient Research Partner
Pam Richards
Patient Research Partner
Dawn Richards
Patient Research Partner
PPRCTs Whiteboard Overview
Working Group Members:
Adena Batterman
Adenike Adebajo
Adewale Adebajo
Ales Ambrozic
Angela Fearon
Angie Botto-van Bemden
Aya Akmal Amin
Ayse Kuspinar
B Robert Mozayeni
Beverley Shea
Bruno Mazuquin
Chiara Naseri
Chris Djurtoft
Daeria Lawson
Deborah Marshall
Denise Bury
Diana Hollander
Fiona Howard
Florian Naye
Francis Guillemin
Gary Choque
Glen Hazlewood
Hema Chaplin
Ilfita Sahbudin
Jean-Noel Talabardon
Josephine Park
Judith Safford
Kai Sun
Kelly O'Brien
Kerrie-Anne Ho
Laurie Proulx
Liana Fraenkel
Madusha Menu Cristeen Jayasinghe
Manuel Lubinus
Megan Thomas
Mickael Hiligsmann
Monica Vieth
Mwidimi Ndosi
Nick Bansback
Pakeezah Saadat
Pamela Richards
Patricia Hurley
Peter Tugwell
Rachelle Buchbinder
Robyn Speerin
Sandra Nolte
Sougata Panda
Sytske Anne Bergstra
Takako Kaneyasu
Tamer Gheita
Yeonhew Kim
Yuya Imai