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!
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Amen, brother. And then there are all the doctors who look at the xryas (MRIs, CTs) first and decide if it is even worth talking to the patient. I always try to teach the residents (ha ha) that each patient is a person first, an xray second. I can’t tell you how many MS patients have been sent as lumber discs, how many lumbar stenosis patients really suffer cervical myelopathy, etc. Patients are changing their approach to medicine but doctors are mired in the past…wonder why we were left out of the health care debate?
Bravo! Why patient- entered data into EHR is vital and will change everything. The #1 underutilized person is the patient & family.
It is incredible how little doctors actually listen to their patients. Then as your symptoms grow over years into a laundry list, they listen even less. I brought up vagus nerve damage to my (now ex) primary care doctor and she said that even tiny damage to your vagus nerve makes you instantly drop down dead. (8 MILLION Americans are living with Gastroparesis due to vagus nerve damage.) Then she wrote down that I was having anxiety and immediately left the room while I was still asking questions. A previous doctor had overdosed me on an anti-depressant because no one wanted to actually know how it “wasn’t working right” and believed that “I don’t feel right” meant I was too much of a problem to listen to. When I went to the emergency room because I lost the ability to put my thoughts to words and understand simple sentences others said to me, the doctor saw what medication was just raised 3 days earlier (the overdose) and immediately walked out of the room, diagnosed me with tooth pain, and told me to leave. I’ve found once they’ve written in your chart that you have any kind of mental issue (depression, anxiety, eating disorder, etc – whether correctly or INCORRECTLY diagnosed) the doctors who read your records will dismiss you EVERY SINGLE TIME. I had a massive infection in my face that caused my cheekbone to turn to mush but 2 CT scans showed nothing – my dentist took 1 x-ray and said it was one of the worst infections he’s ever seen. The medical society in the US needs to stop playing to their egos and start paying attention to their patients.