OWNING YOUR PATIENT DATA
My Body, My Data
How often have you showed up at a doctor’s office and had to fill out a ream of health data before being seen? As we get older, remembering all the dates and procedures becomes difficult. Besides, it is annoying to have to repeat this information over and over again. It can be incredibly helpful to a doctor to have a complete picture of your health, but how complete can it be if you have to rely on your memory?
Didn’t we all think it might be better when medical professionals started using digital record-keeping? Aside from some privacy concerns, it seemed like this would be the end of having to remember if you were current on tetanus shots (who remembers 10 years back?) or how old you were when you had a particular operation. Unfortunately, in most of the world, medical records are kept on a variety of systems which don’t talk to each other. Thus, we still have to keep paper records and fill in forms all the time. And for older folks like me, not only is our history much longer, but our memory isn’t all that good.
The other problem is getting access to your own records. Many doctors make you pay for copying them for you. Even transitioning to a new doctor can be challenging. Test results, such as CAT scans and MRIs are stored differently; too often, you have to repeat a test because you can’t get the CD where your test is stored.
All this means worse health outcomes, as doctors never have access to ALL your data. Most of us don’t have enough medical knowledge to know what’s important. I do, but I was trained in medicine. And I can’t remember everything.
The Right Way to Control Your Health Data
I recently read about a country who found a much better way for doctors and patients to handle their medical records. For the past 12 years, Estonia has had all-digital medical records. Every hospital, lab and doctor use the same system, so you don’t have incompatible record issues.
Patients have access to a very secure online portal to view their records. More importantly, patients OWN those records. When you go to a doctor, you have to give them permission to view your records; you can also take away permissions.
Can’t remember what that surgery was all about 20 years ago? Wonder how many vaccines you’ve had? What about finding the name of a drug you took years ago which you think might help you now? You can find the data easily in your own records.
This kind of health data can include more than would be found in traditional medical records. If you’re like me and do some higher risk things like flying in small airplanes or scuba diving, that data can also be seen by the doctors you choose. It would help doctors to know how often you work out and what you choose to do. They need to know about your past, including injuries, illnesses, trauma, food preferences, education, emotional history and more. Your health appliances, like the Apple Watch, could also feed in here.
Right now, most of the world lets doctors own your data. State laws pretty much dictate this. But why?
Your Data Has Value
As many of us have begun to realize, our personal data has real value. Look at Facebook; it would have never survived without being able to sell your personal data. Unfortunately, our health data is pretty valuable too. And what we don’t know is who is being given access to it, what they are doing with it and whether or not they make money with our data. We have absolutely no discretion in how our data is being used or by whom.
A Better Way
Check out
http://ownyourhealthdata.org
. They are a group working to get us Estonia-like access and ownership to our health data. Imagine a future where you know everything about your body and can decide who gets to see that data. Ideally, you’d want the doctor to know everything, but under a patient-ownership model, you should also be able to correct and hide data that is no longer relevant or inaccurate.
One objection raised is that some people don’t use computers. That number shrinks every year, but in the interim, states could easily set up services that help people access and control their data without having to login themselves. That issue shouldn’t stop a move forward.
There will be pushback from doctors and hospitals, but increasing numbers do post a lot of data to a patient website where you can look at your own health records (at least, some of them). It’s time we own our own records.
