In May of 2016, the biennial Outcome Measures in Rheumatology (OMERACT) Conference took place in Whistler, British Columbia, Canada. OMERACT is an international network of health professionals focused on outcome measurement across randomized controlled trials and longitudinal observational studies. The objective of OMERACT is to improve outcome measures through a data-driven, iterative consensus process. At OMERACT’s biennial international meetings, participants gather in a collegial interactive environment to develop core sets of patient-important outcomes for clinical studies in rheumatology.
OMERACT has published over 1000 peer-reviewed articles. It has 42 active working groups (Table 1). The number grows with every meeting, demonstrating the continuing need for this work.
OMERACT has published 10 core outcome sets [ankylosing spondylitis, fibromyalgia, gout (acute and chronic), systemic lupus erythematosus, osteoarthritis, osteoporosis, psoriatic arthritis (PsA), rheumatoid arthritis (RA), vasculitis] — the evidence is accumulating that their uptake in published clinical trials is increasing, for example, the RA Core Set is now used in over 80% of published RA trials (www.bmj.com/content/357/bmj.j2262).
The 2016 Whistler meeting was a success, with nearly 200 participants intensively participating in 5 workshops: Flare in RA, Polymyalgia Rheumatica, PsA, Antineutrophil Cytoplasmic Antibody Vasculitis, Shared Decision Making, and 16 Special Interest Groups on the program. These consisted of a variety of short presentations and small group discussions, while maintaining the ambiance of a true multidisciplinary, collaborative, friendly yet rigorous process of outcome measure development. Patient contribution continues to play a fundamental part in the OMERACT process; it not only improves the results of OMERACT research, but also gives a new perspective that is clinically relevant to the topic being researched. OMERACT 2016 hosted 21 patients from Australia, Canada, Europe, and the United States. In addition to patients, OMERACT participants came from a range of backgrounds and expertise, including clinicians and rheumatology trainees, clinical outcome methodologists who work in academic environments, regulatory agencies, pharmaceutical and biotech companies, or clinical research organizations. While some OMERACT 2016 participants reside in Canada, the majority of participants of the meeting traveled to Whistler from North America, Europe, Asia, and Australia.
One major focus of the meeting was the operationalization of the instrument selection part of the new OMERACT Filter 2.0 that incorporates a number of clinimetric advances that have occurred since the original OMERACT Filter. Truth, discrimination, and feasibility continue to be the pillars of the OMERACT Filter unique to OMERACT, but as part of the transition to the new Filter 2.1, to select the most promising instruments, participants presented data more detailed than previously on concept match (content validity and face validity of “truth”) and feasibility (practical aspects of length, time to complete, burden, difficulty, and cost). After small group discussions, draft recommendations were brought to a plenary for a vote at this stage. We called this an “eyeball vote” because it was the first scan of the potential for this instrument.
Three Working Groups brought instruments forward at this stage: Flare RA, PsA, and ANCA Vasculitis. All received the votes they needed to move forward into a full review of published evidence and/or creation of evidence as needed for the OMERACT Filter. Based on feedback from the OMERACT community, this “eyeball vote” will be integrated into a more streamlined 1-stage process (watch for Filter 2.1).
Dissemination and promoting uptake of core sets known as “knowledge translation” was another major focus of the meeting. Led by 2 international leaders, Dr. Sean Tunis and Dr. Ian Graham in a special workshop, participants were invited to propose and discuss recommendations for the OMERACT community to (1) strengthen stakeholder involvement in the core outcome set development process, and (2) promote dissemination and implementation of core outcome sets with a specific focus on the potential role of post-regulatory decision makers.
Additional information and publications by Working Groups can also be found in The OMERACT Handbook. The OMERACT Handbook, which contains both methodological and organizational information (currently available on the OMERACT Website: www.omeract.org), has encouraged participants to become more engaged with the process by explaining various OMERACT procedures and practices. The OMERACT Handbook is currently being reviewed, and soon an updated version will be available (www.omeract.org) and will continue as a major reference resource for all those interested in outcome measure development.
Acknowledgment
The OMERACT conferences are possible only through the ongoing voluntary commitment of the chairs and their working groups, to whom we are grateful. A special thank you goes to Valorie Thompson and Andrea Speckin (Innovations Consulting Group) for organizing the logistics and running the conference.
Many universities and granting agencies provided financial support for the participation of delegates. The Organizing Committee thanks the European League Against Rheumatism and the Australian Rheumatology Association for bursaries provided to enable young researchers to attend the OMERACT meeting. Financial support for OMERACT 2016 was provided by the following pharmaceutical companies and their subsidiaries: Abbvie, USA; Amgen, USA; Astra Zeneca, UK; Bristol Myers Squibb, USA; Celgene, USA; Centrexion, USA; Eli Lilly, USA; Gruenthal, the Netherlands; Horizon Pharma Inc., USA; Janssen, USA; Novartis, Switzerland; Pfizer, USA; Quintiles, Netherlands; Roche, USA; and UCB, USA.
Footnotes
OMERACT receives arms-length funding from 36 companies.
EXECUTIVE COMMITTEE
Dorcas Beaton, Canada
Clifton Bingham, USA
Philip G. Conaghan, UK
Maria-Antonietta D’Agostino, France
Maarten de Wit, Netherlands
Laure Gossec, France
Lyn M. March, Australia
Jasvinder A. Singh, USA
Peter Tugwell, Canada
Lee Simon, USA
Vibeke Strand, USA
George A. Wells, Canada
OMERACT 2016 ORGANIZING COMMITTEE
Dorcas Beaton, Canada
Shawna Grosskleg, Canada
Cathy Hofstetter, Canada
Anne Lyddiatt, Canada
Bev Shea, Canada
Peter Tugwell, Canada
George A. Wells, Canada
SCIENTIFIC ADVISORY COMMITTEE
Arvind Chopra
Dan Furst
Desiree van der Heijde
Eduardo Samoyoa
Ernest Choy
Girish Mody
Janet Woodcock
Josef Smolen
Ken Saag
Maarten Boers
Maxime Dougados
Niti Goel
Pam Richards
Pamela Montie
Paul Emery
Peter Brooks
Peter Merkel
Phil Mease
Robert Landewe
Sherine Gabriel
Ted Pincus
William Taylor
DELEGATES
Evo Alemao
Helene Alexanderson
Rieke Alten
Jaclyn Anderson
Omar Azmat
Nick Bansback
Skye Barbic
Cheryl Barnabe
Christie Bartels
Susan Bartlett
Jennifer Barton
Dorcas Beaton
Clifton Bingham
Paul Bird
Rachel Black
Maarten Boers
Annelies Boonen
Peter Brooks
Rachelle Buchbinder
Andrew Burghardt
Vivian Bykerk
Mark Campbell
Loreto Carmona
Maria Casal Dominguez
Connie Chen
Peter Choong
Ernest Choy
Robin Christensen
Lisa Christopher-Stine
Philip Conaghan
Alessandro Consolaro
Maria-Antonietta D’Agostino
Nemanja Damjanov
Maarten de Wit
Amy DeLozier
Haner Direskeneli
Andrea Doria
Michelle Dowsey
Kristina Duffin
Hani El-Gabalawy
Musaab Elmamoun
Sait Burak Erer
Daniel Eric Furst
Sinem Nihal Esatoglu
Bruno Fautrel
Andrew Filer
Monika Finger
Stephanie Finzel
Oliver FitzGerald
Caroline Flurey
Joel Gagnier
Frederique Gandjbakhch
Dafna Gladman
Daniel Glinatsi
Charlie Goldsmith
Susan Goodman
Laure Gossec
Shawna Grosskleg
Ahmet Gul
Serena Halls
Gulen Hatemi
Sarah Hewlett
Catherine Hill
Pil Hojgaard
Robert Holt
Hsiaomin Huang
Susan Humphrey-Murto
Annamaria Iagnocco
Kei Ikeda
Francesca Ingegnoli
Jacob Jaremko
Elizabeth Jernberg
Steffen Jugl
Susanne Juhl Pedersen
Ulrike Kaiser
Sevil Kamali
Tatsuo Kanazawa
Chetan Karyekar
Yasuhiro Katsumata
Helen Keen
Tanaz Kermani
Ergun Kizilocak
Louise Klokker
Margreet Kloppenburg
Marion Kortekaas
Diane Lacaille
Robert Landewe
Christine Lindsay
Hai Liu
Maria Lopez-Olivo
Sarah Mackie
Silvia Magni Manzoni
Alfred Mahr
Walter Maksymowych
Lyn M. March
Lara Maxwell
Alexa Meara
Philip Mease
Peter Merkel
Mihaela Cosmina Micu
Nataliya Milman
Esi Morgan
Jane Munro
April Naegeli
Jan Michael Nebesky
Merrilee Needham
Linda Nelsen
Stanton Newman
Dianne Nguyen
Alexis Ogdie
Sarah Ohrndorf
Dana Orange
Ana-Maria Orbai
Mikkel Ostergaard
Yesim Ozguler
Matthew Page
Jin Kyun Park
Charles Peterfy
Jennifer Petkovic
Kristine Phillips
Carlos Pineda
Christoph Pohl
Linda Rasch
Viviana Ravagnani
Malin Regardt
William Reiss
Bethan Richards
Meredith Riebschleger
Joanna Robson
Ilfita Sahbudin
Ahmed Samad
Wolfgang Schmidt
Bev Shea
Heidi Siddle
Earl Silverman
Lee Simon
Jasvinder Singh
Premarani Sinnathurai
Victor Sloan
Yeong Wook Song
Benjamin Soule
Antoine Sreih
Ilona Steigerwald
Maria Simona Stoenoiu
Kathryn Stok
Bradley Stolshek
Vibeke Strand
Maria Suarez-Almazor
Marcin Szkudlarek
Lene Terslev
Caroline Terwee
William Tillett
Zahi Touma
Karine Toupin-April
Logan Trenaman
Mona Trivedi
Peter Tugwell
Sean Tunis
Nikolay Tzaribachev
Desiree van der Heijde
Marion van Rossum
Lilian van Tuyl
Arianne Verhagen
Richard Vesely
Violeta Maria Vlad
Jelena Vojinovic
George Wells
James Witter
Thasia Woodworth
Yusuf Yazici
Sarah Yim
Leung (Katy) Ying Ying
Natalia Viviana Zamora
Articles presented at the OMERACT 2016 Conference, Whistler, British Columbia, Canada, May 2016
Part 1: Introduction, Workshops, Special Sessions
Part 2: Special Interest Groups, Part 1
Part 3: Special Interest Groups, Part 2
Part 2 will appear in the November issue.