Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

Maarten De Wit, John R. Kirwan, Peter Tugwell, Dorcas Beaton, Maarten Boers, Peter Brooks, Sarah Collins, Philip G. Conaghan, Maria-Antonietta D’Agostino, Maria Antonietta D'Agostino, Cathie Hofstetter, Rod Hughes, Amye Leong, Ann Lyddiatt, Lyn March, James May, Pamela Montie, Pamela Richards, Lee S. Simon, Jasvinder A. SinghVibeke Strand, Marieke Voshaar, Clifton O. Bingham, Laure Gossec

Risultato della ricerca: Contributo in rivistaArticolo in rivista

22 Citazioni (Scopus)


There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities. We supplemented our review with personal experiences and reflections regarding patient participation in the OMERACT process. We found that between 2002 and 2016, 67 patients have attended OMERACT conferences, of whom 28 had sustained involvement; many other patients contributed to OMERACT working groups. Their participation provided face validity to the OMERACT process and expanded the research agenda. Essential facilitators have been the financial commitment to guarantee sustainable involvement of patients at these conferences, procedures for recruitment, selection and support, and dedicated time allocated in the program for patient issues. Current challenges include the representativeness of the patient panel, risk of pseudo-professionalization, and disparity in patients’ and researchers’ perception of involvement. In conclusion, OMERACT has embedded long-term patient involvement in the consensus-building process on the measurement of core health outcomes. This integrative process continues to evolve iteratively. We believe that the practical points raised here can improve participatory research implementation.
Lingua originaleEnglish
pagine (da-a)141-152
Numero di pagine12
Stato di pubblicazionePubblicato - 2017


  • Biomedical Research
  • Forecasting
  • Humans
  • Interprofessional Relations
  • Outcome Assessment, Health Care
  • Patient Participation
  • Professional-Patient Relations
  • Qualitative Research
  • Rheumatic Diseases
  • Severity of Illness Index


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