Data, data – who’s got your data?

Do you have access to your health data? It’s National Health IT (Information Technology) Week, so if you don’t have access, this is the week to start demanding it. Really.

My biggest frustration with the healthcare system, and its use of IT, is that patients are always being told that the only way to secure their data is to restrict access to it. That restricted access include restricting PATIENT access to our own data. It’s Alice in Wonderland for the 21st century. Doubt me? Go ahead, ask a hospital for all your admission records. If that hospital has a patient portal, you might get lucky. If, however, they don’t have a portal? It will be like asking a bureaucrat in the old Soviet Union for paperwork. draws an inspiring, sunny picture about how patients can access their health records. Their vision may come to pass, but it ain’t here yet. Particularly if your cardiologist has his/her own stand-alone practice, then sends you for testing at a hospital, followed by a consult with a vascular surgeon in another independent practice. Getting CCD (Continuity of Care Documentation) data from all three will be a long slog through “please?? PLEASE??” Lather, rinse, repeat.

There is a big light of hope on the horizon, though, and part of that light is shining from actions like the National Health IT Week proclamation. Another big searchlight is a round-table discussion I’ve been invited to participate in on Monday, Sept. 19 in Philadelphia.

One of my very favorite people will be there, e-Patient Dave deBronkart. There will be a number of very passionate advocates for patient access to electronic health records also in attendance. I am literally doing handsprings about this opportunity to engage with other health activist e-patients in a way that will move 100% patient-accessible data protocols forward.

Watch this space for updates 😉

If you want to be really proactive on your own behalf, and on behalf of your family, join me as an early-adopter at Create your own Patient Health Record (PHR) on a secure, portable chip card that can double as your HSA debit card, if you have a Health Savings Account. iPHC membership will also give you access to Health Advocate, which has one of the best patient education platforms this e-patient has ever seen.

Let’s start a patient-centered-medicine revolution, and storm the healthcare Bastille. Who’s with me?

Here’s a link to a slice of my most recent rallying cry on YouTube.


It’s National Health IT week … does that actually MEAN anything?