In May of 2018, the biennial Outcome Measures in Rheumatology (OMERACT) Conference took place in Australia. OMERACT is an international network of health professionals focused on outcome measurement across randomized controlled trials and longitudinal observational studies1. The objective of OMERACT is to improve outcome measures through a data-driven, iterative consensus process that first reaches consensus on the core domains to be measured and then aims to reach consensus on the instruments that meet the OMERACT criteria to be recommended as part of a core outcome measurement set2. At this biennial international meeting, participants gather in a collegial interactive environment to develop and reach consensus on the core sets of patient-important outcomes for clinical studies in rheumatology through workshop activities and plenary voting.
It was an honor for the local organizing committee to host the OMERACT 2018 conference in Terrigal, Australia. Terrigal, “the place of little birds,” is the traditional land of the Darkingjung people. OMERACT was fortunate to be welcomed to the country by local Elder Gavi, have an opportunity to view artworks, artifacts, and bush medicine samples, and to witness traditional dances from indigenous students from the local high school.
There were numerous innovations and “firsts” at OMERACT 2018. In the lead-up to the meeting, for the first time, premeeting Webinars were hosted by the OMERACT Patient Leadership team3 to prepare patients for their active participation in their groups before, during, and after the meeting. The newly formed Technical Advisory Group reviewed all presenting groups’ workbooks prior to the meeting. The OMERACT secretariat held regular calls and virtual meetings to monitor and facilitate progress for the working groups (WG) seeking a vote at the meeting. So much input behind the scenes helped bring the meeting to fruition!
This year, a premeeting4 interactive discussion addressed drug safety from the patients’ perspective with patients, regulators (European Medicines Agency, US Food and Drug Administration, Pharmaceutical Benefits Advisory Committee), and OMERACT members. Important qualitative work was presented from the Glucocorticoid5 and the Drug Safety6 OMERACT WG, as well as contributions from the Standardised Outcomes in Nephrology for kidney disease outcomes and the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events for oncology trials. The whole meeting was recorded in real-time and rapid fire by a talented cartoonist.
There were other firsts for this OMERACT meeting:
the Emerging Leaders7 program, which was attended by returning fellows to further develop knowledge and skills as mentors and future WG and OMERACT leaders
a virtual meeting by a WG with participants in Canada and France linked in
the OMERACT Methodology debut (the approved methodology8 for reaching consensus first on core domain sets9 and then on core outcome measurement instruments10), through a whiteboard video on core domain set selection, along with the introduction of the OMERACT Summary of Measurement Properties table, which encapsulates the selection of instruments using the “OMERACT Filter: 3 pillars, 4 questions, 7 measurement properties, 1 answer”
a now-famous Jeopardy!-style session led by the OMERACT Methodology and Technical Advisory team
the first 2 instruments to receive OMERACT endorsement, presented by the Psoriatic Arthritis WG
facilitator training, offered to enhance the facilitation and consensus-building process in the breakout groups, considering that consensus was the key theme for the meeting
a session on reaching consensus through the Delphi process11.
Our patient research partner commented on the open, free-flowing information and opinion exchange (including discussions that went well into the night), the equal participation of patients in the discussions, the attention being given to patient-centric measures such as adherence, and the emotional thought-provoking experience during discussions on the balance between risks and benefits from the patient perspective in the premeeting Drug Safety workshop.
There were 170 participants from 22 countries in attendance. Presentation at the biennial OMERACT meeting is dependent on WG making a submission and conducting sufficient work in the interim 2 years between meetings. Not all submissions could be accommodated in the final program and several groups opted to be Virtual OMERACT WG.
Five workshops were presented in the program, including voting for the core domain sets for juvenile idiopathic arthritis12, shoulder disorders13, and osteoarthritis (OA) hip and knee14 update, and voting for 2 core psoriatic arthritis instruments15,16, in addition to the Methodology Workshop introducing the OMERACT Methodology for instrument selection. All workshops were presented in a final Implementation and Knowledge Translation session to discuss how participants will spread the word to facilitate uptake of the new evidence generated from the WG activities and the meeting decisions. Promoting dissemination and uptake of core outcome sets (COS) has become a more prominent focus of the past 2 OMERACT meetings. There is increasing emphasis on effective stakeholder engagement as critical to faster and broader use of completed COS by clinical researchers17. The importance of maintaining attention on this issue was highlighted by a pair of votes taken at the beginning of the final session on implementation and knowledge translation. While 76% of respondents believed that 90% of clinical trials should report all measures in each OMERACT COS, 62% of those surveyed estimated that < 30% of clinical trials were in fact reporting COS developed by OMERACT. This suggests that further attention to dissemination and promoting uptake of all the COS endorsed by the OMERACT community since its inception (Table 1A and Table 1B18–37) would be worthwhile. These tables summarize the core domains that have been endorsed across 17 clinical conditions.
WG selected for presentation as Special Interest Groups (SIG) included magnetic resonance imaging (MRI) in arthritis, pain, Behçet disease, stiffness, myositis, polymyalgia rheumatica/giant cell arteritis, the Study Group for Extreme Computed Tomography in Rheumatoid Arthritis (SPECTRA), contextual factors, hand OA, ultrasound, large vessel vasculitis, synovial, adherence, juvenile arthritis MRI, worker productivity, and longitudinal outcome studies. Another first was voting in SIG. On the final day, the Behçet disease and Myositis SIG conducted votes on their core domain sets. Virtual WG included shared decision making, OA flare, and adaptive trial designs in rheumatology. The meeting hosted 17 patients from Australia, England, Canada, the United States, and the Netherlands.
As is now customary for OMERACT meetings, educational workshops were conducted for the 17 patient research partners, 23 newbies (first-time attendees)38, and 26 fellows (all of whom had presented an abstract on OMERACT-related work and received feedback from colleagues and experienced OMERACT mentors).
The “little birds” came into their own with the first Twitter competition, with the top tweeter receiving a discount on registration for the 2020 meeting. Tweets with the hashtag “#omeract2018” reached 52,374 people with 105,548 impressions.
Additional information and publications by WG can be found on the OMERACT Website39. Also available is The OMERACT Handbook, which contains both methodological and organizational information, and has encouraged participants to become more engaged with the process by explaining various OMERACT procedures and practices. The OMERACT Handbook is available at www.omeracthandbook.org40 and will continue to be a major resource for all those interested in outcome measure development. The Handbook is a “living” document to be updated as new methodology evidence comes to light, and clinicians and researchers involved in OMERACT activities are to monitor it for these updates.
Acknowledgment
The OMERACT conferences are possible only through the ongoing voluntary commitment of the chairs and their working groups, to whom we are grateful. The support for the innovations in education, training, and methodology offered before, during, and since this year’s meeting was outstanding and while many made important contributions, the following deserve a special mention for their roles: Dorcas E. Beaton, Beverley J. Shea, Lara J. Maxwell, Maarten De Wit, Peter Tugwell, Susan Bartlett, Susan Humphreys, Bethan Richards, Désirée van der Heijde, Robert Landewé, Francis Guillemin, Maria-Antonietta D’Agostino, Lyn March, Jasvinder Singh, Victor Sloan, Alexa Meara, and Shawna Grosskleg. 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.
Footnotes
Financial support for OMERACT 2018 was provided by the following pharmaceutical companies and their subsidiaries: Amgen, USA; Bristol Myers Squibb, USA; Celgene, USA; Centrexion, USA; Eli Lilly, USA; Horizon Pharma Inc., USA; Janssen, USA; Novartis, Switzerland; Pfizer, USA; Pfizer, Australia; Roche, USA; UCB, USA.
REFERENCES
EXECUTIVE COMMITTEE
Dorcas E. Beaton, Canada
Clifton O. Bingham III, USA
Philip G. Conaghan, UK
Maria Antonietta D’Agostino, France
Maarten de Wit, Netherlands
Laure Gossec, France
Lyn March, Australia
Jasvinder A. Singh, USA
Peter Tugwell, Canada
Lee Simon, USA
Vibeke Strand, USA
George A. Wells, Canada
OMERACT 2018 ORGANIZING COMMITTEE
Lyn March, Australia
Bethan Richards, Australia
Peter Brooks, Australia
Michael Gill, Australia
SCIENTIFIC ADVISORY COMMITTEE
Arvind Chopra, India
Dan Furst, USA
Désirée van der Heijde, Netherlands
Eduardo Samoyoa, Guatemala
Ernest Choy, UK
Girish Mody, South Africa
Janet Woodcock, USA
Josef Smolen, Austria
Ken Saag, USA
Maarten Boers, Netherlands
Maxime Dougados, France
Pam Richards, UK
Paul Emery, UK
Peter Brooks, Australia
Peter Merkel, USA
Phil Mease, USA
Robert Holt, USA
Robert Landewé, Netherlands
Sherine Gabriel, USA
Ted Pincus, USA
William Taylor, NZ
DELEGATES
Adrien Nzeusseu Toukap, Belgium
Agaliotis Maria, Australia
Ahmet Gul, Turkey
Alessandra Alongi, Italy
Alessandro Chiarotto, the Netherlands
Alessandro Consolaro, Italy
Alexa Meara, USA
Alexis Ogdie, USA
Allison Tong, Australia
Amye Leong, USA
Ana-Maria Orbai, USA
Andrea Doria, Canada
Andrew Filer, UK
Angeles Lopez-Olivo, USA
Anna-Birgitte Aga, Norway
Annamaria Iagnocco, Italy
Anne Ashford, Australia
Anthony Sammel, Australia
Antoine Sreih, USA
Arianne Verhagen, the Netherlands
Ashish Mathew, India
Attila Pethoe-Schramm, Switzerland
Aurélie Najm, France
Ayano Nakayama, Australia
Ben Horgan, Australia
Bethan Richards, Australia
Beverley Shea, Canada
Bradley Stolshek, USA
Caroline Flurey, UK
Catherine Hill, Australia
Catherine Hofstetter, Canada
Catherine Sarver, USA
Celina Alves, the Netherlands
Chetan Karyekar, USA
Christine Bailey, Australia
Christine Lindsay, Canada
Christopher Mecoli, USA
Claire Owen, Australia
Clifton Bingham, USA
Connie Chen, USA
David Hunter, Australia
Désirée van der Heijde, Netherlands
Diane Lacaille, Canada
Dorcas E. Beaton, Canada
Douglas Veale, Ireland
Earl Silverman, Canada
Ernest Choy, UK
Esen Cam, Turkey
Esi Morgan, USA
Espen A. Haavardsholm, Norway
Esperanza Naredo, Spain
Ethan Craig, USA
Féline Kroon, the Netherlands
Florian Berghea, Romania
Francis Guillemin, France
George Bruyn, the Netherlands
George Wells, Canada
Geraldine Hassett, Australia
Gillian Hawker, Canada
Gulen Hatemi, Turkey
Heidi Siddle, UK
Helen Keen, Australia
Helene Alexanderson, Sweden
Hubert Van Hoogstraten, USA
Ida Kristin Haugen, Norway
Ilfita Sahbudin, UK
Ingrid De Groot, the Netherlands
Jacob Jaremko, Canada
Jane Munro, Australia
Janet Maynard, USA
Jasvinder Singh, USA
Jelena Vojinovic, Serbia
Jennifer Horonjeff, USA
Jessica Leung, Australia
Jo Bell, Australia
Joanna Robson, UK
Joel Gagnier, USA
Jonathan Cheah, USA
José Bernardo Negrón Torres, Spain
Kathie Tymms, Australia
Kathleen Wyrwich, USA
Kathryn Stok, Australia
Kayte Andersen, Canada
Kenta Misaki, Japan
Lara Fallon, Canada
Lara Maxwell, Canada
Lara Stallard-Taylor, Australia
Laura Coates, UK
Lee Simon, USA
Lene Terslev, Denmark
Lennart Jans, Belgium
Leticia Deveza, Australia
Lisa Christopher-Stine, USA
Loreto Carmona, Spain
Lyn March, Australia
Maarten Boers, the Netherlands
Maarten De Wit, the Netherlands
Malin Regardt, Sweden
Margreet Kloppenburg, the Netherlands
Maria Antonietta D’Agostino, France
Maria Simona Stoenoiu, Belgium
Maria Suarez-Almazor, USA
Marieke (Maria) Voshaar, the Netherlands
Marion Kortekaas, the Netherlands
Marion Van Rossum, Canada
Mark Campbell, Canada
Matthew Page, UK
Max Yates, UK
Meagan Walsh, Australia
Merrilee Needham, Australia
Michael Gill, Australia
Mihir Wechalekar, Australia
Mikkel Østergaard, Denmark
Mirkamal Tolend, Canada
Miroslawa Nowak, USA
Nele Herregods, Belgium
Niti Goel, USA
Pamela Richards, UK
Paul Bird, Australia
Peter Brooks, Australia
Peter Merkel, USA
Peter Tugwell, Canada
Peter Wong, Australia
Philip Conaghan, UK
Philip Mease, USA
Premarani Sinnathurai, Australia
Rachel Black, Australia
Rachelle Buchbinder, Australia
Rafi Haner Direskeneli, Turkey
Reuben Escorpizo, USA
Richard Crew, UK
Richard Holland, Australia
Richard Vesely, UK
Robert Holt, USA
Robert Lambert, UK
Robert Landewé, the Netherlands
Robert Prill, Germany
Robin Christensen, Denmark
Rodger Laurent, Australia
Russell Buchanan, Australia
Ruth Wittoek, Belgium
Sabrina Mai Nielsen, Denmark
Samuel Whittle, Australia
Sara Nysom Christiansen, Denmark
Sarah Mackie, UK
Sarah Manske, Canada
Sean Tunis, USA
Serena Halls, UK
Shawna Grosskleg, Canada
Shephard Mpofu, Switzerland
Silvia Magni-Manzoni, Italy
Simon Krabbe, Denmark
Sofia Ramiro, the Netherlands
Staeva Teodora, USA
Stephanie Finzel, Germany
Susan Bartlett, Canada
Susan Beard, Australia
Susan Goodman, USA
Susan Humphrey-Murto, Canada
Susanne Juhl Pedersen, Denmark
Suzanne Verstappen, UK
Tanaz Kermani, USA
Tarimobo Michael Otobo, Canada
Teemu Karjalainen, Australia
Thasia Woodworth, USA
Therese Dawson, Australia
Thomas (Tom) Buttel, Australia
Tiffany Westrich-Robertson, USA
Toby Smith, UK
Todd Fox, Switzerland
Ulf Sundin, Norway
Umut Kalyoncu, Turkey
Ursula Heilmeier, Germany
Vibeke Strand, USA
Victor Sloan, USA
Victoria Evans, Australia
Victoria Navarro Compán, Spain
Violeta Vlad, Romania
Vivian Bykerk, USA
Walter Maksymowych, Canada
Wen-Hung Chen, USA
William Tillett, UK
Xavier Valencia, USA
Ying Ying Leung, Singapore
Yongdong Zhao, USA