EULAR News – June 22, 2018
A final observation from this year’s EULAR meeting
A final observation from this year’s EULAR meeting encouraging to all patients is the emphasis many sessions had on the importance of patient participation and partnerships for achieving research outcomes that are relevant to the actual patients. Many presentations clearly communicated that no matter how complicated the research or how brilliant the researcher, patients can always offer unique, invaluable insights.
Experience in Europe and North America has shown that patient advice when designing, implementing and disseminating research outcomes makes studies more effective, more credible and possibly even more cost efficient.
At a EULAR session led by People with Arthritis/Rheumatism in Europe (PARE), Condruta Zabalan, a EULAR Patient Research Partner (PRP) described to delegates that “patients are the best and only source of patient experience information. We have the experience and skills that complement the researchers’. We know what it feels like to live with a particular disease and to undergo the treatments with their various side effects. We have a good idea of which research questions are worth asking and when a question should be framed differently. We contribute by making research more socially relevant.”
EULAR established the network of educated PRPs – defined as persons with a relevant disease who operate as active research team members on an equal basis with professional researchers, adding the benefit of their experience living with arthritis to any phase of the project. Since 2010, there have been three EULAR courses to train patients to become research partners. There are now 59 trained PRPs with the EULAR network.
Arthritis Consumer Experts has been a pioneer for patient engagement and partnerships to inform research in Canada and around the world. To learn more about the roles people living with diseases or illness play in research and how to get involved, visit Arthritis Research Canada and have a look at the IAP2 spectrum infographic. The IAP2 (International Association for Public Participation) Canada is an Association of members who seek to promote and improve the practice of public participation in relation to individuals, governments, institutions, and other entities that affect the public interest in nations throughout the world.
Do you have a question on research or a health topic that impacts you, as a patient, your local community or the Canadian health system? The Strategy for Patient-Oriented Research (SPOR) Evidence Alliance has researchers located across Canada with expertise in a range of health conditions and topics who may be able to help. Please let the SPOR Evidence Alliance know about your research needs by completing a set of questions using the English or French form.