IntroductionOMERACT 2018: International Consensus Conference on Outcome Measures in Rheumatology, Terrigal, Australia, May 2018

Introduction

LYN MARCH, BETHAN RICHARDS, MICHAEL GILL, PETER M. BROOKS, BEVERLEY J. SHEA, DORCAS E. BEATON, LARA J. MAXWELL, SEAN R. TUNIS, SHAWNA GROSSKLEG and PETER TUGWELL
The Journal of Rheumatology August 2019, 46 (8) 962-968; DOI: https://doi.org/10.3899/jrheum.190105

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.

View this table:
Table 1A.

Outcome Measures in Rheumatology (OMERACT) core areas and core domains (inner circle of the OMERACT Onion) for joint health conditions.

View this table:
Table 1B.

Outcome Measures in Rheumatology (OMERACT) core areas and core domains (inner circle of the OMERACT Onion) for systemic rheumatologic health 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.

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Figure

OMERACT 2018 — International Consensus Conference on Outcome Measures in Rheumatology Clinical Trials, in Terrigal, Australia.

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

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