Your medical record—those documents that describe your life in organized medicine—can be short or long, simple or complex, bland or revealing, depending upon your medical history. And with the ever-growing presence of electronic medical or health records, your personal health history is becoming, in theory, more transmissible and vulnerable than ever.
But did you ever stop to wonder who actually owns your medical record? Is it you (the patient), the doctor or the healthcare organization(s) to which you have belonged? What if you have seen many different doctors and been a patient at many different hospitals and clinics? Are the rules different for each practitioner or facility?
The answers are complex and may surprise you. One would think that your medical record—the codified accounting of your diagnoses, medications, allergies, sensitivities, lab and other diagnostic test results, hospitalizations and anything else to do with your physical and psychological medical history—should be primarily yours to examine, relegate and dispense. After all, it’s your body (and in many cases your mind) that has been examined, poked, prodded, X-rayed and otherwise been put under the medical microscope. Should not these intimate and sometimes embarrassing bits of information be your property to do with as you wish?
Surprisingly, you don’t have as much control as one might think. Often, the patient must jump through regulatory hoops within the system to gain either full or, more likely, a sanitized, “watered down” version of the doctor’s notes and other medical history.
This has led some patients to be dissatisfied enough to seek relief. One group that has offered such relief for over five million patients in 20 institutions is OpenNotes. This group has been at the forefront of giving patients full and unfettered access to their medical records, a trend that seems to be catching on. And it seems that this has resulted in a more positive patient/doctor interface, contrary to predictions. One pilot program revealed significantly improved patient satisfaction and education, and it also was thought to contribute significantly to improved patient safety. That’s something both doctors and patients can be happy about.
Bear in mind this is just one pilot study and more research needs to be done. But one must admit, more candor in disclosure of your medical information and what is said about you medically might lead to a sense of empowerment, patient buy-in and even a potential reduction in malpractice claims and enhanced patient safety.
But for now, you should still expect continuing roadblocks both in access to and obtaining unedited versions of your medical—and psychiatric—records. Five million patients is a good start but there are over 300 million of us in this country. That’s a lot of records to free up, for those who desire it.For more with Dr. Sherer, click here for his podcast and video interviews, and here to buy his book, Hospital Survival Guide: The Patient Handbook to Getting Better and Getting Out