The OMERACT Patient Research Partner Network is a virtual center for people diagnosed with a rheumatic disease interested in utilizing their experience to help rheumatology research. Our PRP Network includes:
· Past and current members who participated in one or more OMERACT conferences;
· Any patient with a rheumatic disease who wishes to learn to communicate their lived experience with the disease as a partner in an OMERACT Working Group;
· Any patient with a rheumatic disease who wishes to learn about the dynamics and specifics of core outcome set development, how the patient perspective is critical to the practical, transparent, and realistic view of the various rheumatic diseases;
Minimum Guidelines for PRP Network Involvement
In order to ensure that PRP communications and education modules are sensitive to and respect your needs as a Patient Research Partner, the following guides are provided:
1. All OMERACT communications, programs, and educational trainings are in English. While we realize that English may not be your primary language, a talking and working knowledge of English is a basic guideline that is respected throughout OMERACT. Feel free to discuss this with your PRP Leaders in advance.
2. Your input, voice of experience, probing inquiries, and questions to encourage your understanding are vital to the exchange of communications, discussions, and ultimate voting on various steps of the OMERACT research process. You are encouraged to provide input along with all other stakeholders throughout the process.
3. You do not have to, nor does OMERACT expect you to, represent the total sum of experience of patients with your similar rheumatic disease. You would not be required or expected to talk about the experience of others --- just your own experience, if you so desired and are asked. With your approval, you may be called upon during various meetings to provide a patient’s perspective on the topic.
4. Each PRP is either assigned to a Working Group or Special Interest Group (SIG) or may volunteer to be a PRP for such groups, depending on your interest. It is expected that you would be an active member of the group throughout the year as guided by the Chair and Co-Chairs of the groups.
Benefits of Being a Member of the PRP Network
Members of the OMERACT PRP network will stay informed about future developments and ongoing research activities. The network is expected to be a safe platform to ask questions and to discuss personal experiences with fellow PRP’s. You will receive newsflashes and updates when there are PRP vacancies in a working group or events that might be important for patients. Being a member of the network is also a great way to contribute to OMERACT research activities such as virtual interviews or focus groups, surveys or Delphis.