Can Doctors Learn from Diabetes Patients?
Experience says they can
Editor's Note: While this columnist is no longer writing for dLife.com and we have ceased to update the information contained herein, there is much to be read here that is still applicable to the lives of people with diabetes. If you wish to act on anything you learn here, be sure to consult your doctor first. Please enjoy the column!
November 2010 — A few years ago, the sheer idea of a patient showing a doctor something he may have not known before was inconceivable. Doctors, after all, go to school for many more years than most professionals… so they must know all the answers to all the medical questions, right? I will let you be the judge.
My initial diabetes diagnosis story showed me that doctors may not always have the right answers. I was told I had type 2 diabetes but I actually turned out to have LADA (Latent Autoimmune Diabetes in Adults), which explained why the treatment I was using wasn't working for me: we were treating the wrong disease.
This is by no means an isolated incident. Just recently, I met another former type 2 diabetes patient who came back to her doctor after reading about LADA. She found many common elements between what she had read about this type of diabetes and what she was seeing in herself. Eventually, her doctor ordered the necessary blood work and to her surprise, discovered her patient didn't have type 2 diabetes but LADA. The doctor uttered three words in reply to the results: "I am humbled."
If you come to think of it, assuming that you as a doctor must have the answers for your patients is a bit of a learned habit. And changing habits is certainly not easy. But in the face of evidence, there's something new to be learned: patients can (and do) share valuable information among themselves. This is something that has become easier to do thanks to online patient communities.
Nowadays, there is hardly anything that can be done to stop patients from sharing their stories and experiences: the waiting room conversation has gone online and people are no longer limited to interacting with other patients while waiting on their names to be called for their appointment.
What are doctors to do?
In conversations with medical professionals, I have found they typically have one important concern in connection with conversations between patients online: the quality of the information their patients have access to. This is no small concern and it certainly is a valid one. In spite of the best efforts to moderate conversations and keep snake oil vendors at bay, there is a real risk of having a patient go "rogue" and not follow his prescribed treatment because he interpreted a particular way something he read or because he heard about some miracle cure.
But what if doctors were to have an open conversation with their patients (leave the proverbial office door open, if you may) about what they are reading online? Whether doctors want it or not, the reality is that patients are doing it. Maybe they are googling their prescription and reading more about it or they are engaging in conversation with others taking the same drug. Once the patients leave the doctor's office, they can't be stopped from searching and chatting with others online. But what if patients felt it was OK to talk about their findings with their doctors? This would completely transform a situation that feels threatening (and almost dangerous) to some medical professionals into an opportunity for education.
This could become a space to further educate patients and clarify why a particular drug or treatment may not be appropriate in their case (i.e. a traditional doctor-to-patient lesson). But the powerful new lesson that could result from this door opening is the lesson the doctor can learn by being exposed to information that he would otherwise not know about.
In the coming months and years, hopefully we will see more and more doctors opening up to hear all kinds of online patient stories. In the process, they will certainly hear outrageous things but they are bound to pick up on more than one thing that they hadn't known about before. I hope then we will see more and more patients being prescribed participation in an online patient community or reading patient blogs as part of their treatment.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
As I mentioned in an earlier post, one of the benefits that made it cost-effective for me to go with the real healthcare (HSA) plan rather than the phony (HRA) plan is that my company is now covering "preventative" medicines at $0 copay. The formulary for these, as stated by CVS/Caremark (my pharmacy benefits provider), covers all test strips, lancets, and control solutions. I dutifully get my doctor to write up prescriptions for all of my testing needs, submit...