He argues that doctors, researchers, drug makers and regulators should pay more attention to patients’ firsthand reports of their symptoms while they take medicines, because their information could help to guide treatment and research, and uncover safety problems.
This is a very serious issue… and it comes up for discussion with our residents every now and then. A while back there was a young man in the emergency room of our institution. He claimed the CIA was after him and they injected him with a substance that made him pass out… When he woke up, his shoulder hurt and he had soiled his underwear. I was called because I was the attending on call for our department. My resident immediately dismissed all his complaints and was upset that he was called for a consult in the middle of the night. After I settled him down, we had a little talk… obviously he had some underlying psychological issues. But his story actually makes sense. I asked my resident to X-ray his shoulder and get a Cat Scan of his head. He didn’t understand why until the results were known. This unfortunate man had a seizure because of a large brain tumor, and seizure patients will not infrequently dislocate their shoulders because of the enormous muscle contractions. Lesson learned… not yet.
A few mos later we had a patient who was about to be indicated for an ankle reconstruction by a very prominent foot surgeon. But the patient was a bit un-settled. He reports he never actually injured his ankle and he was being told he just didn’t remember injuring the ankle. At our second opinion, he again stated his ankle simply started giving way… with NO history of trauma. Hmmm… the wheels started spinning and very deliberate exam revealed very subtle weakness. A quick MRI of the spine revealed the problem… a spinal cord tumor which was causing weakness of the muscles which keep the ankle stable.
I could go on and on… and as I teach our residents and students everyday. Listen to your patients!
With regards to the other issues covered in the article. If we listen to our patients and catalog their complaints and symptoms, we may be able to identify diseases sooner, reactions to medicines sooner, bad prosthetics sooner, etc…. Docs… this is the age of social media… if we don’t do it, the patients will do it on their own. Wait, as a matter of fact they already are…. we better catch up! The world is changing and we need to change with it… after all, WE ARE ALL PATIENTS!