Patient participation is one of the key features of the OMERACT methodology, but this has not always been the case. When OMERACT was established in 1992, only researchers and rheumatologists were involved in the development of a core outcome set for rheumatoid arthritis (RA).Engaging patients in any international research was not even in the consciousness of that time. It was not before the 5th conference (year 2000) that patient participation became an issue. Some participants questioned the lack of patient involvement in the definition of what a clinical relevant improvement is: relevant to whom? It was suggested that only patients could answer that question in a meaningful way. Therefore the Executive Committee decided to invite patient representatives to the next conference in 2002.
Fatigue as recommended outcome During the 2002 conference a group of 11 patients from 6 countries reviewed the existing RA Core Set (the minimum domains that should be evaluated in a clinical study), and concluded that important domains from the perspective of patients were missing, such as fatigue, emotional well-being and sleep disturbances. The dialogue between patients and researchers prompted new research, in particular the extent and characteristics of fatigue. New data presented in 2006 convinced the OMERACT participants that fatigue is an important domain that belongs to the RA Core Set. Later, a scientific evaluation of 10 years of patient participation in OMERACT demonstrated that the inclusion of fatigue in the RA Core Set was an immediate consequence of the advent of patient participants as a new stakeholder in OMERACT.
Support for Patient Research Partners Since 2002 the role of patients has evolved. In 2004 the patient participants were identified as Patient Research Partners and became equal collaborators in research activities. Over time the patient group has developed its own supportive structures including a Glossary in lay language (developed for the 2004 conference and updated bi-annually), the appointment of a chair of the patient panel (2004), pre-conference introduction sessions (2006), a buddy system (2008), daily conference update sessions (2008), patient information pack with lay summaries (2008), introduction of personalized programs (2010) and educational webinars (2016). A Patient Research Partner joined the overall OMERACT Steering Committee in 2009 (prior to the reorganization of the OMERACT leadership and Executive Committee). More recently the establishment of a PRP Leadership Team and two designated Executive Committee members responsible for ensuring the patient perspective in OMERACT work streams have formalized the governance of the PRP panel.
Recommendations for Patient-Researcher Collaboration In 2014 the OMERACT delegates endorsed three overarching principles that:
1) emphasize the unique value of the patients lived experience,
2) the importance of PRP involvement throughout the research process; and
3) the need to comply with ethical standards of trust and partnership.
Delegates also accepted a set of guiding recommendations for participatory research. These recommendations provide practical suggestions for the tasks and responsibilities of both researchers and Patient Research Partners. They are helpful in ensuring that expectations are mutually exchanged, preferably before the start of a (new) research project.
OMERACT defines a Patient Research Partner (PRP) as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project. PRPs are not just a focus group or research subjects, but full members of the research team. Working groups are encouraged to be reach out and to create equal opportunities for PRPs to participate to their interest level or capacity in research activities throughout the year. PRPs who attend the biennial OMERACT meetings have full voting rights equal to the research professionals present.
"I see their role in OMERACT in two ways. One : it’s a reality check. And the other thing is much more subtle. The knowledge that there’s a patient there changes the way we talk and think." - (Rheumatologist, USA)
"I think it is one of my competencies to provide this more emotional aspect of a disease." - (Patient, the Netherlands)
"Patients are indispensable when it comes to determining the content of a patient reported outcome." - (Researcher, Australia)
"The real benefit of patient involvement is the awareness that we should look for outcomes beyond blood samples, x-rays and our old questionnaires." - (Epidemiologist, Sweden)
"What I appreciate most, is the atmosphere and the fact that everybody is interested in everybody, independent of what you are." - (Biomedical scientist, the Netherlands)
"OMERACT was indeed a memorable conference, here I learned very clearly that patients can make a difference." - (Rheumatologist)
"The patient involvement process in OMERACT and the changes in outcome measurements and the use of them in the drug tests have made a real difference for so many patients." - (Epidemiologist, Sweden)