Ensuring patients' voices in core outcome set development
Welcome to the OMERACT Patient Research Partner (PRP) home page! We are a virtual home for information, resources, education, networking, and new and tested ideas and concepts utilized by patients and researchers interested in patient-centred international rheumatology outcome measurement research.
For updates and recent information please go to the What’s New Section
Your PRP Leaders,
Maarten deWit NL, Laure Gossec France, Amye Leong USA, Pam Richards UK, Marieke Voshaar NL.
OMERACT Patient Research Partners (PRP) support researchers by sharing their lived experience with a rheumatic condition. The PRP network facilitates the effective participation of all PRP's engaged in the OMERACT process.
Nobody knows how arthritis changes your life better than the people who have the condition. Recognising this, OMERACT has Patient Research Partners fully integrated into each stage of the OMERACT process from helping to create a research idea to crafting the research implementation plan to identifying and recruiting participants, to helping to interpret results, to helping to write, communicate and disseminate research findings .
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.
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.
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)