Overall, members of the patient panel valued outcomes differently than physicians in some circumstances—even recommending triple therapy for one scenario. (Note: The recommendations from these panels should not be interpreted as part of the ACR guideline for RA treatment.) Additionally, the patients “strongly endorsed the importance of meaningful patient input in [clinical practice guideline] development. … Moreover, they thought that patients would be more likely to endorse guidelines that had been developed with meaningful patient input.”
The authors conclude their paper by saying that determining the best panel composition requires more study. They note, “Based on the insights of this pilot experiment the ACR is deliberating on how to modify current [clinical practice guideline development] procedures. … Additional experiences are necessary to explain the differences that do exist between the [patient and physician] groups, evaluate their differential impact and advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines.”
Fraenkel L, Miller AS, Clayton K, et al. When patients write the guidelines: Patient panel recommendations for the treatment of rheumatoid arthritis. Arthritis Care Res (Hoboken). 2015 Nov 6. doi: 10.1002/acr.22758. [Epub ahead of print]