OMERACT Patient Research Partner Network

About Us

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OMERACT

The term OMERACT was originally established in 1992 to mean “Outcome Measures in Rheumatoid Arthritis Clinical Trials”. Since then OMERACT has evolved into an international network with U.S. nonprofit organizational status. OMERACT is a unique research collaborative with international working groups and gatherings working in partnership toward improving outcome measurements across the spectrum of rheumatology intervention studies. Today the acronym now stands for 'Outcome Measures in Rheumatology'. OMERACT is unique by engaging relevant stakeholders to develop practical, patient-centered outcome measures and their tools for use in rheumatology-specific clinical studies and trials. When OMERACT endorses a core set, it is because there is consensus amongst OMERACT participants that the evidence to supports this has been clearly demonstrated. This is accomplished through a data-driven, step-by-step consensus process with stakeholders such as patients, clinicians, academics, industry, regulators, epidemiologists, ethetists, care givers, providers, payers, etc. What is unique is the inclusion of patients early into the conceptual design and implementation of research.   

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Our Vision

  Since 1992 OMERACT has been an independent international non-profit organization, a collaboration of health professionals, epidemiologists, outcomes researchers, pharmaceutical representatives and others that value the perspectives of each stakeholder in research. This organizational environment stimulates open discussions and equal collaborations. OMERACT believes that all participants should have the same opportunities to contribute to the research development, implementation and collaborative process.    

Since 2002 OMERACT has acknowledged and welcomed the pivotal role of patients in outcomes research and the need to provide support and education to Patient Research Partners (PRPs) who participate in Working Groups and the biannual meetings. The Executive Committee (ExCo) acknowledges the value of working together with the PRPs to achieve its research methodology objectives. OMERACT is a recognized leader in the engagement of patients at all critical levels of international rheumatology research. Very few other international reseach organizations have had this kind of legacy thus far.   

Our PRP vision for the future is one of seamless involvement of patients who are trained in the basic ways of research to share their lived experience with chronic disease in early and continuous dialogue and process, that produces outcome measures, tools, resources, and study results that are meaningful to patients at the local, national and international research levels.   

We believe we can make a difference, and hope you will join us!     

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The Network

  Each PRP has a valuable lived experience of their health condition that complements the learned knowledge of the professional perspective. Utilizing experiential knowledge is facilitated in OMERACT by ensuring PRPs are given sufficient training and support throughout their participation in Working Groups and/or at OMERACT meetings. To facilitate the effective participation of PRPs, OMERACT has established the PRP Network.   

The Network of PRPs is vital to the future of the OMERACT organization and to advance patient-engaged outcomes research. The main objectives of the network are twofold:   

1. Enhancing the education of PRPs to strengthen PRP roles and skills and encourage  continuous involvement in OMERACT research work streams;   

2. Establishing and expanding the network of OMERACT PRPs across rheumatic diseases to facilitate inclusion in OMERACT projects.       

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"I know that’s important to researchers from the medical side, but from the patient’s side this is what’s really important to me, so how do we meet in the middle?" -  (Patient, Canada)  

"And the patient perspective opens up the whole realm of things we haven’t looked at." -  (Rheumatologist, USA) 

"My main concern was ‘will I understand enough to really be able to contribute anything’, but very quickly I realized that my own experience of the disease would be more than enough." -  (Patient, UK)