Your Health, Your Data

Did you know that in Nevada your medical records can be destroyed after 5 years?  For a list of retention in other states click here.

I don’t know when I first became aware that I had unlimited access to my healthcare data, but I do know when I was given advice about what to do with it.  About 9 years ago I was consulting with a pain specialist for some numbness I was experiencing.  He couldn’t figure out why I was experiencing these symptoms, but the possibilities included multiple sclerosis (MS) and a brain tumor.  Charming.  Fortunately it was neither of those, but the doctor explained that MS takes 4-5 years on average to diagnose (Facts About MS).

I had symptoms that didn’t point to a clear diagnosis, and because he couldn’t rule out MS, the doctor advised that I start keeping my own file of all medical tests, images, etc.  He said this would make it easier whenever I was referred to a new specialist or doctor – I could simply hand over the file and they could instantly see my medical history.  It was my file to keep – he advised I should never leave it with anyone, but they could make whatever copies they needed before returning it to me.

Medical RecordsThis has been one of the greatest pieces of advice I have ever received from a doctor.  When I was diagnosed with thyroid cancer I had a complete history of all my thyroid blood tests over the years, as well as my original goiter ultrasound, all saved on a flash drive.  As I consulted with various doctors and specialists, it made it so much easier to just hand over the file rather than trying to chase down all the tests from different labs and testing facilities.

Keeping your own medical records is becoming increasingly easier.  For example, Labcorp used to send test results to your doctor, and you could request a copy from your doctor’s office.  Then they gave you the option to have a duplicate copy of the results mailed to you, but you had to remember to ask for that before they did the test.  Now they have an online portal where you login to see your results.  This makes it so easy to access your results.  I now have access to my Labcorp results, family practice doctor records, UC Davis Medical Center records (where I had thyroid surgery), and my son’s gastroenterologist’s records, all through patient portals. However, access isn’t enough – you need to download the results and store them on a location where they won’t be deleted, and where they can all be kept together and accessed instantly by you.

Keeping your own medical records is becoming increasingly more relevant. There is nothing requiring each online portal provider to give you continuous access, and you’re relying on them keeping your data.  Here’s the thing you really need to worry about: If you’re over 23 years old Nevada law only requires your doctor, lab, or testing facility to keep your medical records for 5 years after they were created or received (see NRS 629.051).  This doesn’t mean medical providers won’t keep your records for longer, but there is no guarantee.  They are completely within their rights to delete your records.  And it’s not even from the date of your last service with them – it’s from the date they were created. Nobody is going to have your complete medical history if you don’t start collecting it yourself.

The test performed on my goiter was done 8 years before I was diagnosed with thyroid cancer. If I hadn’t kept a copy of my medical records they might not have been available, and I would have no baseline from which to determine how much my tumor had grown.

If you don’t already collect your medical records, you should seriously consider starting this practice.  It might take some time to gather all your records so far, but it’s a worthwhile exercise.  Grab a cup of coffee or a glass of wine, plug in your flash drive, sign on to your portals and start copying files.  Send records requests to any testing facilities or hospitals where you’ve had imaging, surgery, and so on.  Once you’ve gathered your history you can keep it up-to-date by requesting or downloading a copy of every test or procedure you have.  Every medical provider has to provide you with a copy at no charge – this includes MRIs, x-rays, ultrasounds, doctor’s notes, everything.  Think of it as an insurance policy – you have it in the hopes you’ll never need it.  Do it for your kids too – some day they’ll thank you for it.

 

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