Health secrets for sale
Your health secrets are for sale. If you're buying more junk food, let your gym membership lapse or you've packed on a few pounds you might hope no one has noticed, but there's proof that they have. Your personal health information is being collected, analyzed, then put up for sale.
Chronic heart disease, high blood pressure and cancer treatment; health secrets once filed away that are now being bought, sold and traded electronically.
"You're targeted," said Dr. Deborah Peel, founder of the nonprofit organization, Patient Privacy Rights.
Dr. Peel is leading the fight for patient rights in Washington DC.
"Anything about your mind and body is the most valuable information about you in the digital age and everyone wants it," said Dr. Peel.
The Austin doctor thinks it's cruel that a simple online search for information leaves you exposed.
"When people are vulnerable and desperate and want to learn about health all of that is tracked and sold," said Dr. Peel. ""It should be your choice. You're not asked and you're not compensated."
Where you shop, what you eat, whether you smoke is tracked with each swipe of your credit card. Data brokers can dig even deeper using prescription information, monitoring social media and lifting your answers off health surveys. It's legal, but Dr. Peel thinks it's an invasion of privacy.
"We are all absolutely trapped," said Dr. Peel. "You would have to be an Edward Snowden to figure out how to evade all of the places that collect information about you."
Thousands of companies are mining your health information, including Exact Data. KEYE-TV did a search for people in Round Rock suffering from alcohol addiction. In seconds the website generated 8,617 leads for sale for about $1,000 dollars. The list would include names, addresses, even emails.
To get more personal KEYE-TV narrowed the search. The new parameters zoom in one Round Rock zip code. Our search included married men and women, between 30 and 50, who have kids and earn between $50,000 and $100,000. That search generated 105 leads, people who might be alcoholics or at a minimum have recently been online researching alcoholism. $90 gets names and addresses, double that amount and we could get emails.
It's cheap enough for a lot of people to buy. So KEYE-TV asked Exact Data's CEO if a nosy neighbor or a reporter could get their hands on it.
"Probably not," said Exact Data CEO, Larry Organ. "We're only supposed to be selling lists to people who have a specific marketing need for that list."
In other words, they sell to companies that want to sell to you.
"It's amazing how much information is out there about us that is not protected," said Mac McMillan, co-founder and CEO of CynergisTek, a healthcare information security and privacy consulting firm.
The healthcare privacy expert says he never fills out health surveys, doesn't post on Facebook, but knows his health information could still be vulnerable. HIPAA's privacy and security rules allow data from medical records to be shared if identifying information like names, street addresses and social security numbers are removed. It's supposed to be anonymous data, but merge the health information and zip codes with other databases and it's getting easier to reconnect the dots. That's especially true if you have a less common disease or live in a less populated area.
"If you are in a rural setting it is almost impossible to de-identify data to the point that I'm not going to figure out who it is the information belongs to," said McMillan.
HIPAA's privacy rules do not extend to data brokers.
"You've got a hospital over here that has that information and they're obligated to protect it. This information broker over here, who may have re-identified your information, is not under the same obligation and they can sell that information to whoever they want," said McMillan.
Dr. Peel understands the value of big data for medical research, but she thinks that's not the main motivation to collect, analyze and sell health information.
"The primary use of our data is not for data to improve our health. It's the use of our information to improve products, sales and new business models," said Dr. Peel.
The psychiatrist is fighting for legislation that would give patients more control. She wants data brokers to need her permission to sell her story.
"Ask me. I'll tell you if I want you to know who I am," said Dr. Peel.