by Danielle Ofri
CNN

Whenever a patient asks me about the side effects of a particular medication, I point to the very long roster of symptoms listed for the drug. “It’s anything any patient has ever experienced,” I say, then try to help prioritize the symptoms into the more common ones versus the rarer ones.

This list has always represented for me the presence of the patient’s voice in medicine. It turns out, though, that this is not the case. Not long ago I learned that these side effects listed on the package insert are not the ones the patient actually complains of. No, they are the symptoms the patients’ doctors choose to report, the doctors’ impressions of what the patients are describing.

Of course, doctors have always filtered patients’ words. Some of this is the result of the historical difference in lay versus medical language. A patient may say that she had trouble breathing, though did not cough up any blood. The doctor would then write that “the patient admitted to dyspnea, but denied hemoptysis.”

Doctors often prioritize patients’ symptoms differently from the way patients do. A patient may be most concerned about a painful ingrown toenail, but the doctor may focus on the anginal symptoms of chest pain instead.

And then doctors may—diplomatically or not—casually toss some patients’ concerns aside entirely. I have been guilty of this myself. I have some patients who seem to stockpile hordes of complaints for me, unloading them in heaps during our 15-minute visit. I listen and nod, but choose not to enter into the medical record the ones that seem clinically insignificant.  This stems from both the reality of the time crunch, and my clinical experience that most of these minor aches and pains are self-resolving.

But maybe I’m wrong. Maybe I’m doing a disservice to my patients by acting as a filter.  A growing body of evidence suggests that the gap between what patients say and what doctors document can be ample. Patients often report symptoms much earlier than did doctors. Several studies have shown that patients’ report of symptoms correlate more accurately to actual health status than did the doctors’ reports.

Some researchers are suggesting that patients be given a direct avenue for their voices to be heard. For clinical trials assessing new medications, why couldn’t patients enter their symptoms directly into a drug database rather than telling the doctor and then having the doctor decide which symptoms should be entered?

And for regular medical visits, perhaps there could be a section of the computerized medical record for the patients to access directly to list all concerns. This would be a legitimate part of the record, and then I would have my part in which I’d place my clinical impressions of these symptoms.

Seems like a good idea to me. I bet that we’d uncover many more side effects sooner. It would also remind us, that doctors need to view patients’ words as primary data, and that we should be careful about filtering the patient’s voice too much.  (from CNN)