In the last couple of years concerns about the privacy of online health information have grown, as health care finally catches up to other sectors in its use of information technology (IT). The Stimulus package will pump $19.2 billion into healthcare IT, especially electronic medical records for doctors.
While technology can make your medical records safer in some ways than they’d be in a paper chart (using encryption, fire walls, audit trails, etc.), the fact is, no system is totally fail-safe. And when screw-ups happen, technology tends to super-size them.
A few advocates say the main fix is for people to have as much choice (or “consent”) as possible about sharing particular tidbits of health info. Not a bad place to start, but relying too much on consent is impractical and burdensome. We also need limits on who can use the info in your record, and for what. The use of these and other widely accepted “fair information practices” will go a long way when it comes to safeguarding the medical record your doctor holds.
But wait. Your virtual health record is so much bigger than that. It’s the iceberg beyond the traditional medical record tip. Part of it is the verbal trail you create on Facebook, on Twitter (evidently!), in an online patient community, via web searches, or on e-mail. But it’s also what you do–what you buy at the grocery store, how fast you drive, maybe even who you talk to on the phone. Right now, most of that information isn’t easily publicly available, and it isn’t linked, but more of it will be. There are plenty of incentives for companies to understand and influence the minutia of your daily life.
The iceberg of health information about you is growing. Recently scientists determined that Agatha Christie suffered from Alzheimer’s just by analyzing the vocabulary in her novels.
As more and more data about each of us is generated, including through tiny sensors that will increasingly be used in clothing and other products, there is more information to glean from it—about our physical health, actions, and even mental health. The MIT Media Lab is working on computer programs that can “read” head movements and facial expressions to understand emotions.
Eventually, the traditional medical record may pale relative to the vast stores of information about your health that can be found in nontraditional ways. So when we think about health privacy we need to recognize that safeguarding the traditional medical record is only the start. The best policy approaches also protect against discrimination and its consequences. So despite the banners and screams of “Socialist State” in my neighborhood in Washington DC (ooops, there’s more personal information!) the Health Reform Bill, if implemented well—is a strong and necessary step toward protecting individuals against an unavoidable erosion of their health privacy.
Lygeia Ricciardi is the founder of Clear Voice Consulting (www.clear-voice.com) and part of the leadership team of Clinovations (www.clinovations.com) She specializes in strategy, policy and implementation of health IT–with a passionate focus on the consumer. And yes, she is on Twitter: @Lygeia