“Why don’t you just ask me?” may be a question patients with rheumatoid arthritis agree could help improve the management of their condition and overall treatment standards. Now, findings from a pilot study recently Arthritis Care & Research cover - smallpublished in Arthritis Care & Research, an official journal of the American College of Rheumatology (ACR), support the notion that patients can play a more meaningful and active role in the development clinical practice guidelines or CPGs that impact treatment decisions and possible access to treatments.


The paper titled, “When patients write the guidelines: Patient panel recommendations for the treatment of rheumatoid arthritis,” examined an innovative pilot program to evaluate more integral participation of patients in the development of CPGs—a set of statements that define national standards of rheumatology practice for at least three years or more.


Aimed to optimize patient care, typically, these guidelines are based on a review of evidence or extensive collection of recent studies by a voting panel of clinical experts and up to two patients. Alongside the physician-dominated panel, the first ever pilot study incorporated a voting panel of 10 patients. There were several noteworthy takeaways from the study for patients and healthcare professionals alike:


  • It is feasible to develop CPG recommendations based on a voting panel composed entirely of patients.
  • The patient panel developed nearly the same recommendations as the physician-specific panels for questions where there was a substantial amount of evidence, which accounted for 13 of 18 total questions.
  • The difference between patient and physician recommendations usually came down to the weight they gave to the impact of side effects when evaluating treatment scenarios. For example, patients weighed “non-serious” adverse events such as gastrointestinal discomfort as more troublesome than physicians. And, patients were willing to inconveniently take more pills if there was a notable efficacy difference with fewer side effect risks associated with that treatment.


“The insights gained help us to better understand rheumatology patients’ viewpoints and priorities, especially as they relate to guideline development,” said Amy S. Miller, Senior Director of Quality at the American College of Rheumatology, who oversees ACR guideline efforts. “We were glad to have the opportunity to partner in this successful pilot program.”


The just published paper is the result of a close collaboration among lead author Liana Fraenkel, M.D. of the Yale University School of Medicine, the American College of Rheumatology, CreakyJoints, and many Arthritis Power Patient Governors who participated in the project and contributed to the analysis.

Arthritis Power is the first ever patient-led, patient-generated, patient-centered research registry for arthritis. The registry is specifically designed to collect health data from tens of thousands of arthritis patients to support future research comparing treatments, identifying new treatments and potentially finding elusive cures. Currently, more than 1,700 people are registered. Arthritis Power is open to everyone at ArthritisPower.org and free to download on an IPhone or Android.


To read more about the study, please click here.