How much health care data is mined without your knowledge?

The Business Insider article, “Senator Warns Fitbit is a Privacy Nightmare and Could be Tracking Your Movements,” reports that Senator Chuck Schumer called for federal protections to prevent companies like Fitbit from collecting, sharing and selling consumer data to health insurers, employers and others. Fitbit, like Nike+FuelBand and Jawbone, sells wearable trackers that monitor sleep, health functions and physical activity.

Senator Schumer accused FitBit and Smartphone apps of sharing users’ information and location, infringing on consumers’ privacy. I purchased a FitBit Flex a week ago and when I read the fine print about my data being collected and shared without my permission, I returned it to the store. I didn’t want my personal behaviors shared with companies, data brokers, and others. There’s something unseemly and downright scary about that.

Which brings up the issue of health care data mining and how that could and may have already affected us all as patients. You may not know it but with the onset of electronic medical records, health/fitness apps and more, your data might be collected without your knowledge. According to Bloomberg’s article, “Your Doctor Knows You’re Killing Yourself,” some hospitals and health insurance companies are using detailed patient data to create profiles to identify those who are at high risk for getting sick and calculate how much it would cost to treat them. Their intention, according to the article, is to intervene before a health crisis occurs.

Why are they doing this? Under The Affordable Care Act (Obamacare), hospitals have a big incentive to keep patients healthy because the law changes how they are paid in terms of penalties and incentives. With your health information, they can protect their financial bottom line by intervening if you are at risk.

Just like retailers have been doing for years, your credit card purchases might be tracked to see if you buy cigarettes, cancel your gym membership, fill your prescriptions, and more.

Does anyone see this is as a direct violation of privacy?

Carolinas HealthCare System, which runs more than 900 medical care centers, has begun collecting data on more than 2 million people to identify high risk patients so that doctors can intervene before they get sick. They purchased the information from data brokers who scan public records and credit card purchases.

What this could mean for you and me are surprise phone calls, letters or other forms of communication about our behaviors that affect our health. Probably more.

According to Bloomberg’s article, “Hospitals Are Mining Patients’ Credit Card Data to Predict Who Will Get Sick,” University of Pittsburgh Medical Center’s insurance provider, purchased data on more than 2 million of its members to make predictions about which patients are more likely to to get sick, go to the ER or an urgent care center.

But it gets worse. Patient recruitment companies are targeting patients who are already sick, scouring credit card histories for shopping habits and information from pharmacies to identify patients for clinical trial recruitment. If that isn’t a privacy violation, I don’t know what is.

We accept certain social media data tracking. You see it every time an ad pops up after you have searched or clicked on a similar item on the internet. You’re being tracked. But when it comes to private health information, you’d think there would be more protection by HIPAA and the new Omnibus rule.

Personally, I value my privacy. It’s one thing if I don’t read the fine print on an app or fitness tracker and my data is shared. But if my data is collected without my knowledge and I am contacted by my physician or health insurance plan in the name of proactive or preventive health care, I don’t think I’d like that. It would definitely make me feel cagey, fearful of being watched somehow.  If I were sick with cancer, I sure wouldn’t want a patient recruitment company calling.

The physician-patient relationship is crucial for quality of care, patient safety and patient satisfaction. If data becomes a major driver, then how do patients maintain relationships with providers, much less be honest with them?

Granted, we don’t have much privacy anymore, but there must be some level of confidentiality and privacy or we will, in Orwellian terms, become a society where individuals are monitored at the expense of the welfare of a free society. Maybe that’s already here.

Martine Ehrenclou is a patient advocate.  She is the author of Critical Conditions: The Essential Hospital Guide to Get Your Loved One Out Alive and The Take-Charge Patient.

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