In health care, information enables better work. It’s very simple. Nobody can perform to the top of their potential if they don’t have information; to constrain the flow of information is to constrain what’s possible in healthcare. Yet time after time, we hear how difficult – sometimes impossible – it is for patients and families to access, use, or share their health information from one care provider to another. We must make it easier, and it is up to us to demand change.
To start, every one of us (and our friends and neighbors) needs to demand our health records.
In fact what we should ask for is not just CDs or printouts now and then – we should demand a medical record spigot that sends us a continuous flow of information, just like banks and credit cards do. You don’t have to read everything they send; you just need to have it, so you can review it when you need to, and so you can do with it what you want.
Why should it be hard work to get your sick mother’s records?? Your sick child’s?? Your own? Every individual has a right to health, and that includes a right to what my musician friend Ross Martin M.D. calls “their DaM data” – their “Data About Me.”
In my TED Talk I asked “Why is it that iPhones and iPads advance far faster than the health tools available to you to help take care of your family??” The answer is that iPads have tons of data to play with, and in healthcare that data’s locked up
Apps like Quicken get all your data from banks and credit cards and bring it together – because banks have spigots. Quicken connects and gets what it needs, so you can get the big picture. If there’s a mistake you can spot it as soon as you check. We need this in healthcare.
It will be harder in healthcare because medicine’s complicated. But you know Silicon Valley – they’d be happy to invent new software to sell us, but they can’t because the data’s locked up. Demand a spigot!
The spigot problem cuts both ways. Now I have data that my care providers can’t see: my home blood pressure machine and bathroom scale put my data in the cloud and on my phone. I was showing it to my doctor during an appointment and I realized, Holy crap, his big computer can’t see this!
What you can do
- If your care providers have a “patient portal,” sign up now. Don’t wait. This one’s quick and easy: just ask. Signing up online takes only five minutes and it’s free. Do it: we need to stop them from saying “Patients don’t even take it when it’s free!” If they haven’t offered it to you, call ’em up and ask!
- Until you have a spigot, carry your own water: ask every clinician and hospital for copies of your data. It may take time, so start now. Often you can get it for free, or they may want to charge you; many people say that if they push, the charge may be waived. (Get it on CD, if you can, not paper!)
- Tell them you want a spigot – a DaM medical record spigot. Tell your care providers “I really want to start getting involved in managing my records. Please get software that will let me do this.” They can’t buy that software yet, but all change starts with people asking.
- Got a story to share?
Here’s how! Without stories, issues don’t have human impact. Have you tried to get your records and been stonewalled? Was it cryptic, or wrong? Was it great and easy? Tell us! Share your story here.