I’ve just completed my annual patient safety and HIPAA training. It’s the kind of mindless exercise where you sit for half an hour and mindlessly click next until you receive a certificate which keeps you out of administrative trouble for another year.
But in the training, I stopped on one page, which I’ve seen dozens of times. It explains how any patient has the right to view their health records, and it underscores this point that the patient’s health records are really his or her property, not the hospital’s. I agree with this. Medicine isn’t about doctors keeping things from patients. It’s about empowering patients to take control of their health and their lives.
But as I thought a bit more about the stacks upon stacks of medical records in the electronic health record, I thought a bit more about what we put into those records. Quite often, it’s not something that is fit for a patient to read themselves.
To begin with, we’re quite unflattering in our descriptions. Each note begins with something along the lines of “Mr. Jones is a morbidly obese 56 year old 20 pack year smoker with a history of coronary artery disease presenting to clinic today complaining of continued chest pain.” Who wants to see themselves introduced as morbidly obese and recognized for their health flaws? And who wants to be told that they are complaining of chest pain? Chest pain seems to me like a perfectly reasonable thing to bring up to your doctor. A patient might think, “I didn’t realize I was complaining…”
Charts are also littered with non-complimentary analyses of patients. “Poor historian” is code for the patient can’t keep his or her story straight. “Poor compliance” means the patient is bad at taking their medications. And “poor insight into disease” means that the doctor thinks the patient hasn’t gotten the message the doctor has been trying to get across.
Each of these coded criticisms are actually quite useful and important. For instance if a patient does have poor insight, it’s important that the doctor spend more time on the next visit to answer any questions the patient may have. It’s actually quite important to the patient’s care. The issue is that in the way we write the notes, the comments are not intended to be seen by the patient.
So if the health record truly belongs to the patient, we should be a little more polite in how we describe them, but this politeness comes at a cost to the care of the patient if we can’t be fully objective and blunt. The current solution is surprisingly effective. Currently, anyone can request their health records, but very few people actual do so.