When was the last time you had a Tetanus shot? If you’re like me, that will be a hard question to answer. You may remember getting some stitches for that rusty nail incident a couple of years back, but the exact date is fuzzy. You might be able to check a patient portal, but which one was it? Did you ever set up a password? Turns out that “owning” your data is not the same as easily accessing it.
But don’t sweat it. The 21st Century Cures Act provision has your back. Acknowledging how utterly disjointed our healthcare data is, Centers for Medicare and Medicaid Services (CMS) has been working for over 10 years to push the U.S. healthcare system into becoming more interoperable. That means making it easy for you and your doctors to share health records with one another.
This year, new regulations are going into effect that are meant to help you get a handle on who owns your data by giving you unlimited access to your health records. You have been able to request your records for a while, so what changed? The Cures Act has a nifty little provision that gives patients the right to “API access.” For the not-so-technical folks, that means you can ask medical app vendors like Huddle Health or Apple Health to connect to your provider and retrieve a copy of your medical records for you. In the case of Huddle, that retrieval is “automagical” (i.e. it just works) for one year.
To answer the original question, multiple entities actually “own” your health information. Here’s who that is:
You. As a patient, you have full rights to request a copy of anything and everything the medical office or health system has on file for you. In 2022, that access will extend to your insurance company, too!
Your doctor. The health system your provider works for is a covered entity. Legally, that means it has special regulations to protect your health information. Without going into too much detail, part of the protection means it must maintain a copy of your medical records for multiple years, even if you no longer use that provider. What it cannot do is share those records with anyone without your permission. If you’re curious about data sharing, lookout for a Notice of Disclosure next time you’re at the doctor’s office. That will explain who your doctor can share your information with and ask for your consent.
At the end of the day, the important thing to note is that you have the same right to your healthcare data as your provider does.