OMERACT Patient Research Partner Network

This years’ OMERACT meeting took place in Terrigal, a beautiful town, close to Sydney and situated along the east coast of Australia. Eleven experienced and six new PRP's participated in several Special Interest Groups and Workshops, most around core domain sets and one around the assessment of two instruments for Psoriatic Arthritis. This instrument workshop for the first time presented data collected through the new OMERACT Filter 2.1. Unique was also the central focus on methods for consensus building, in particular on the use of the Delphi method in core set development and on improving the facilitation of breakout sessions which form the heart of the conference. For the first part two experts were invited, among which Richard Crew from Liverpool who is responsible for the development of the Delphi software that COMET (Core Outcome Measures in Effectiveness Trials) uses. As always, PRP's were involved in almost all sessions. The group had never been so diverse in terms of background and experience. The leadership team, and in particular Pam Richards, had developed a  comprehensive PRP introduction package. Unfortunately Laure Gossec, the patient stream coordinator in the Executive Committee was unable to attend. Her supportive role was taken care of by Alexa Meare  who did a wonderful job to help the group bound. Overall, OMERACT 14 was a great success with a lot of interactions and dialogue between PRPs and researchers. There are always items to improve and they will be discussed over the coming years.


                                                                     


In 2017 guided by the PRP Leaders, OMERACT establish a virtual or online PRP network for two reasons:  

(1). To provide education, training, peer support, and timely updates in order to participate fully in OMERACT; and 

(2) To ease the path for patients and care givers with various experience and interests in rheumatic diseases to become active participants in national and international OMERACT research Working Groups.   

By increasing the communication and support of PRPs, we believe patient perspectives can and will improve the quality, practicality, and meaningfulness of OMERACT research activities.  Having a systematic way of communicating among and between PRPs, the leadership of OMERACT, and the researchers across the globe will also strengthen the qualities and results of PRP-researcher collaboration.    

Since 2002 patients have steadily become an integral part of the OMERACT process. Individual patients who attended one or more conferences are considered part of the patient panel. With the establishment of the OMERACT PRP network in 2017, patients are offered the opportunity to stay involved in ongoing research activities in a variety of ways: 

· A designated website for PRPs with background information, training modules, personal testimonies, upcoming events, opportunities and vacancies. 

· Invitations to participate in educational webinars on research processes such as core outcome set development, outcome research, patient and public involvement and other innovative rheumatology research topics to increase your skills and knowledge for participation in any research project. 

· Invitations to participate in ongoing OMERACT research streams, surveys, and related national and international projects. 

· Opportunities to share, gow and learn about the PRP experience with other PRPs to discover common interests and issues.    

All patient members of OMERACT working groups and all patients that ever attended an OMERACT conference are welcome to join the PRP network. If you are interested to become member to, please send an email to our network coordinator:  admin@omeract.org