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The 64-year-old former gym teacher who came to see Orly Avitzur, Consumer Reports’ medical director, was a frequent visitor to emergency rooms. He had several medical problems, including diabetes and high blood pressure.
Each time he visited Avitzur for neurologic care, she learned that there had been interim tests, consultations and hospitalizations, his recollections of which were vague. He saw multiple providers through different health networks, and while Avitzur worked hard to track down his medical records , she worried that his doctors were privy to only a limited window of his medical history.
Unless you get your medical care through a health-care system that maintains unified electronic health records (EHRs), you may have a similar experience. Scenarios like this play out over and over in doctors’ offices across the United States. And it can be risky because for doctors, seeing patients without complete medical records is like driving a car blindfolded, Avitzur says.
Eventually, it’s hoped that all EHRs will share information with each other. Until then, savvy patients should keep copies of their medical records and make them available to each of their doctors. This will give your doctors a more comprehensive understanding of your health status and put you in control of your medical records.
Here, from Avitzur, is advice on how to gather your information and use it to make sure you’re getting proper medical care:
Start by asking your doctors whether they have patient portals. Signing up for these password-protected websites will allow you to view portions of your EHRs from each provider, medical practice or health-care system. (Also, check whether your doctors participate in OpenNotes, which offers full access to EHRs.)
Ask for a copy of your record after each doctor’s visit or procedure. You can then create your own personal health record (PHR) by consolidating the information, including diagnoses, medications and lab tests. Store the material in a binder at home, securely on your computer or in the cloud (information storage on the Internet).
Keeping your own health records can be useful in many ways. For instance, it allows you to make sure the details are accurate and up-to-date.
Avitzur recently saw an otherwise healthy 92-year-old retired epidemiologist for nerve testing before a knee replacement. He reported finding an error in the results of a pre-surgical exam. Indeed, the doctor who had performed the exam had recorded “no edema” (fluid) in one of his legs, but both the leg and knee were severely swollen.
Medical records are full of erroneous details such as this, Avitzur says. Some of them are due to carelessness and some to the fact that EHRs can automatically “copy forward” — or populate — the notes with old information and include copied material from other providers. Such features are supposed to make things easier for clinicians, but they also increase the chance for mistakes.
Having a PHR can also help ensure that you understand what your doctor told you during an office visit. It’s easy to forget or misconstrue what was said, especially if the information is detailed, is laced with medical jargon, is delivered in a rush or conveys bad news.
On a practical level, maintaining your own records may safeguard the information in the event of an unforeseen problem. Computer crashes, fires and floods have sometimes prevented doctors from sharing information with other health-care providers. In addition, some doctors might close their practice and leave no one to forward medical records or pay EHR vendor fees to make them available.
Having your information may also make it easier to get a second opinion. Patients often worry about alienating their doctors by requesting that their medical records be sent elsewhere, Avitzur says. While doctors are rarely offended, having a PHR allows you the freedom to proceed without that concern and without delay.
What happened to the retired gym teacher? At Avitzur’s urging, he created a three-ring binder with sections for his medical providers, his medication and allergies, surgeries and procedures, laboratory and radiologic tests, hospital discharge summaries and doctors’ notes. And he has been bringing it to every visit since.
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