What you don’t know about your health data will make you sick

Jeanette Beebe at Fast Company: “Every time you shuffle through a line at the pharmacy, every time you try to get comfortable in those awkward doctor’s office chairs, every time you scroll through the web while you’re put on hold with a question about your medical bill, take a second to think about the person ahead of you and behind you.

Chances are, at least one of you is being monitored by a third party like data analytics giant Optum, which is owned by UnitedHealth Group, Inc. Since 1993, it’s captured medical data—lab results, diagnoses, prescriptions, and more—from 150 million Americans. That’s almost half of the U.S. population.

“They’re the ones that are tapping the data. They’re in there. I can’t remove them from my own health insurance contracts. So I’m stuck. It’s just part of the system,” says Joel Winston, an attorney who specializes in privacy and data protection law.

Healthcare providers can legally sell their data to a now-dizzyingly vast spread of companies, who can use it to make decisions, from designing new drugs to pricing your insurance rates to developing highly targeted advertising.

It’s written in the fine print: You don’t own your medical records. Well, except if you live in New Hampshire. It’s the only state that mandates its residents own their medical data. In 21 states, the law explicitly says that healthcare providers own these records, not patients. In the rest of the country, it’s up in the air.

Every time you visit a doctor or a pharmacy, your record grows. The details can be colorful: Using sources like Milliman’s IntelliScript and ExamOne’s ScriptCheck, a fuller picture of you emerges. Your interactions with the health are system, your medical payments, your prescription drug purchase history. And the market for the data is surging.

Its buyers and sharers—pharma giants, insurers, credit reporting agencies, and other data-hungry companies or “fourth parties” (like Facebook)—say that these massive health data sets can improve healthcare delivery and fuel advances in so-called “precision medicine.”

Still, this glut of health data has raised alarms among privacy advocates, who say many consumers are in the dark about how much of their health-related info is being gathered and mined….

Gardner predicted that traditional health data systems—electronic health records and electronic medical records—are less than ideal, given the “rigidity of the vendors and the products” and the way our data is owned and secured. Don’t count on them being around much longer, she said, “beyond the next few years.”

The future, Gardner suggested, is a system that runs on blockchain, which she defined for the committee as “basically a secure, visible, irrefutable ledger of transactions and ownership.” Still, a recent analysis of over 150 white papers revealed most healthcare blockchain projects “fall somewhere between half-baked and overly optimistic.”

As larger companies like IBM sign on, the technology may be edging closer to reality. Last year, Proof Work outlined a HIPAA-compliant system that manages patients’ medical histories over time, from acute care in the hospital to preventative checkups. The goal is to give these records to patients on their phones, and to create a “democratized ecosystem” to solve interoperability between patients, healthcare providers, insurance companies, and researchers. Similar proposals from blockchain-focused startups like Health Bank and Humanity.co would help patients store and share their health information securely—and sell it to researchers, too….(More)”.