For centuries, doctors felt that their notes were their property, and none of the patients’ business. This attitude slowly shifted, and the Health Insurance Portability and Availability Act (HIPAA) of 1996 put into law the fact that patients must be allowed to review and get copies of their medical records. Despite this, access to records has remained a daunting task for many. A study done in 2017 of 83 hospitals, all “top ranked” by US News and World Report, found that the information patients were given by phone often differed from that on the forms they had to sign, and that a majority of hospitals charged well over the federally-suggested cost for an electronic copy. Many refused to supply records in the format patients requested, even though this is mandated by law.
Is it worth the bother? Increasing evidence says that you should read your own medical records. There are many benefits. A common failing of current Electronic Medical Records (EMRs) is that they are filled with cut-and-paste from prior notes and often propagate misinformation. An old note says you had an appendectomy as a child and this is carried forward indefinitely, even if you still possess your appendix. Ditto for medicines you stopped taking eons ago, and allergies you never had. If for no other reason, it is worth looking through your record for such mistakes and having them corrected.
Beyond correcting errors, there are many benefits to reading your own records. Some seven years ago, researchers looked at how both doctors and patients reacted to completely “open notes.” Patients at three primary care practices, in Massachusetts, Pennsylvania and Washington State, were given complete access to their doctors’ notes via a secure portal. Included were 105 PCPs and 13,564 of their patients. 11,155 patients opened at least one note, and almost half of these completed a survey on their reactions. Over 80% reported that open notes helped them feel more in control of their care and three quarters of those taking prescription medications said that they were more regular with taking these after reading about their condition. About a third said they shared the notes with others. On the down side, a third had privacy concerns, worrying that others might get into the records and about 5% found something in the notes that was worrisome or offensive. At the end of the experiment, 99% of the patients wanted open notes to continue. The doctors were initially hesitant, but only rarely did the practice result in longer visits or more time addressing issues outside of visits, and none opted to stop when the experiment ended.
One of the biggest problems in patient-physician interactions is that patients find it hard to process all the information they are given during a visit, and it has been repeatedly shown that much of what a doctor says is quickly forgotten. I have advised people to take notes during visits and/or to bring a friend or relative with them as a second pair of ears. Having the ability to read and reread notes of the visit is another good way to be sure you truly know what happened at the visit.
Be an “engaged” patient. Read those notes.
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