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Outside of basic health info, there are no hard-and-fast rules about what information is relevant. “For every disease, there are specific key data,” Harlan Krumholz, MD, SM, a cardiologist and Yale School of Medicine professor who studies how patient data control and usage can improve care, tells SELF. Pay attention to what providers tend to ask you about and track in connection with a given condition you’re dealing with—whether that’s specific lab test results or information about your lifestyle—for clues about what to include in your file.
“Over time, an individual with a chronic condition will learn the difference between two sets of information,” says Olenik: the relevant and the irrelevant. But Clagett, of Duke HomeCare & Hospice, points out that many people understandably might not have total fluency in medicine and health care jargon and systems, or much experience with whatever’s going on in their own bodies specifically at a given moment, to feel comfortable making a firm call on what’s right to put in or leave out of a file. When in doubt: Ask your doctor.
While it may be useful to keep recent lab results like imaging studies, urine tests, and blood work handy, experts tell SELF that it’s not helpful to keep every test result you’ve ever received in a health file. Ditto for doctor’s visit notes, discharge documents, old prescription information, personal health journals, and insurance statements. “It doesn’t matter what happened when you were 6 if you’re now 66, in most cases,” Cooper Linton, MSHA, the associate vice president of Duke HomeCare & Hospice, tells SELF. “Knowing what your pulse rate was after a jog five years ago probably doesn’t matter either.” You can put any additional or outdated information into deep storage somewhere safe just in case—but you’re probably not going to need it.
Business How to find your health information
Compiling health records may seem daunting, but Linton points out that many of us already have a lot of the necessary info in our wallets, phones, and computers.
Many providers also have patient portals where you can access your visit history and notes, test results, prescribed medications, and more. You can call their offices for help accessing their portals if you’re not sure how to do so.
Until recently, getting your hands on additional health records was often easier said than done. Tracking down and requesting information often involved tons of confusion, red tape, and fees. But, as of last fall, new federal regulations state that you can now call any health care provider in the US and ask for your full medical record, and they have to make it available to you promptly and accessibly. Some care providers may still be hammering out the details of complying with this new regulatory framework, but if you do hit a speed bump, keep asking and you should get the info eventually.
Every expert SELF spoke to stressed that gaps in your health file aren’t necessarily a problem. Maybe at certain points in your life, you didn’t have access to medical care. Maybe you got care in another country, or in an informal context that didn’t involve record keeping. Maybe your records got lost. Maybe you’re an adoptee who doesn’t know your biological family’s history. Whatever the case, just assemble as much information as you can, and medical experts can help you work out the rest.
Business How to organize a 30-minute health file
There’s no one tried-and-true way to organize your info into a file. Physical binders, digital folders on a thumb drive, data uploaded to cloud storage—each method has pros and cons. Work with the format that seems like it’ll be easiest for both you and the folks involved in your care to access, navigate, and understand. Just make sure you make at least one backup in case something happens to the original.
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Mark Hay