My medical record says WHAT???


This video was made for the "What's In Your Health Record" video challenge: http://yourrecord.challenge.gov from HealthIT.gov http://www.healthit.gov/.

The video describes an event in which I discovered that a student doctor during a new patient intake interview had noted erroneous information in my medical record, which I discovered by accident when I was about to move to a new town. I asked to have the error corrected, but they refused. The error significantly altered the provision of my health care, as well as access to certain resources and information. In addition, the error was, to me, shameful and distressing, adding insult to injury.

What had happened was the doctor, instead of noting that I had been a domestic violence survivor, had noted that I was a street drug user, when I am not and never have been. What had happened was that I had been "slipped" something unawares, much like young women now who are "slipped a roofie" as part of victimizing them. That entry in my medical record changed the entire tenor of communication between myself and my health care team at the time.

This was only one incident of errors in my medical records. While this was the most dramatic, there have been many many times I have found errors in my medical records. Every time I've checked my medical records, there have been errors. Sometimes the errors have been what medicines are safe for me to take; sometimes it is my family history, or what conditions I have, or the status of those conditions. Sometimes a healthcare provider might have struggled to diagnose a complicated medical condition, and will attribute it to depression. Later, after the real diagnosis is finally discovered, the earlier misdiagnosis remains in the record, uncorrected. Often the errors are what medications I am taking, and why. Certain drugs I don't take keep reappearing on the list of medications I do take, and I can't figure out why. Every error I've found has had the potential to cause future problems with my health care as a result of misinformation or misunderstanding.

This has happened fairly routinely in my family also. I remember one time a doctor entered a misdiagnosis in my mother's medical record following a traumatic injury. It was ten years before she found a doctor who was willing to do an X-ray of the injury and treat her for the debilitating chronic pain that had resulted from it. She discovered the error in her record when another doctor asked her about it. She had no idea it was there, and that this was why she was unable to get help for her pain. It turned out the bone injury was treatable, and after a couple months of regular traction treatments, she was fine, but what about those ten years during which she could have been functional?

Now, with electronic health records, it is easier to protect ourselves and those we love through being aware of what the records say. I dream of a day in which our medical records will include not just notes of the doctor's observations and thoughts, but brieft video snippets of the medical interview in which the information was provided. I can see this being important as my mother ages and takes medications that blur her memories. Now, she will sometimes not remember earlier events that are listed in her medical records, and will deny them. I could see the medical record serving as a resource for testing memory function with personal rather than public events. But the most important part right now is providing information and tools that help patients understand, manage, and communicate about their own health conditions as a valued member of their own health care team.

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