The European League Against Rheumatism (EULAR) has developed recommendations on how clinical researchers can partner with patient representatives. They’re not talking about simply including patients as the subjects of studies, but about having selected patients team up with the researchers in every step, from identifying what needs to be studied to how to conduct the study.
They crafted eight recommendations and bounced them off 28 patients and 53 professionals, who didn’t always see eye to eye. For example, a recommendation to include a minimum of two patient research partners in every project was embraced by 93% of patients but by only 68% of professionals. Read more in my full story.
The article points to previous efforts that successfully employed advance concepts of patient participation, including the Cochrane Musculoskeletal Consumer Group, which invites consumers to fill out an online survey and help set research priorities. The article also cites patient participation efforts at conferences on Outcome Measures in Rheumatology (OMERACT), and in creating the Rheumatoid Arthritis Impact of Disease (RAID) scoring system.
I have to admit, this was all news to me. I’m wondering if this is a concept that has taken hold in the United States, and in other fields besides rheumatology. If you’re a clinician, a clinical researcher, or a patient research partner, I’d love to hear your thoughts and experiences.
— Sherry Boschert (@sherryboschert on Twitter)