Those of you who follow my blog know that I’m a supporter of Creaky Joints and the associated Joint Decisions and Arthritis Power initiatives. I have (belatedly) run across a news release from them entitled, “New Study Confirms Arthritis Patients’ Ability to be More Integral Contributors to Clinical Practice Guideline Development.” I’m not going to recite the findings of the study here, but the release (and the study) is certainly worth a read. Importantly, the study stated “that patients developed nearly the same recommendations as physician-dominated panels for questions where there was evidence warranting moderate to high confidence.” Normally treatment recommendation guidelines are determined by panels that, if not completely comprised of physicians, only have one or two patient advocates. This study clearly demonstrates that patients are well suited to participate in developing treatment guidelines.
For (some or maybe many) physicians, this concept is unsettling. I suppose it’s like a driver telling a highly trained auto technician how to diagnose and fix a catalytic converter. But while the technician is the expert in repairing cars, the driver is actually the expert in knowing how the car performs.
The same is true in the doctor-patient relationship. The doctor is certainly the expert in the clinical aspects of a treatment. However, the patient is the expert in knowing how they feel as well as which treatments are palatable enough that they will actually comply with them. Only the patient knows, for example, if they’re suffering enough to undertake the additional risks of moving from a DMARD to a biologic in order to find relief.
Having this voice, in my opinion, is critical in defining treatment guidelines that affect, not the doctor, but the patient.
And while some patients prefer to simply follow their doctor’s advice (and there is nothing wrong with this), I prefer being an active participant in my health care.
I hate having RA. But I love living in a time where patients voices are not only heard, they’re starting to be sought. There are many ways to participate. If you want a place to start, click on the Creaky Joints, Joint Decisions, and Arthritis Power links above.
Thanks for checking in.