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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  • ninguem

    Write a prescription for prenatal vitamins for your dog.

    Fill the prescription at your pharmacy. Don’t give them to the dog, it might hurt the dog. Take them yourself if you want.

    Wait and see how long it takes for Fido to get mailings for baby cribs and diaper services.

    I’ve done several variants of this, and my dog now gets lots of interesting mail, all unsolicited.

    • http://www.thetakechargepatient.com Martine Ehrenclou

      Very funny and unfortunately true!

    • SteveCaley

      Yeah, mine ran off to a time-share in Maui, after cashing in on a few credit card offers. BAD DOG!

    • Suzi Q 38

      I once filled out a magazine subscription for our dog.
      You are right.

  • SteveCaley

    Two more atrocities are on the horizon:
    1) The videotaping of all patient encounters “for the medical record.”
    2) The implanting of RFID chips for ‘medical’ purposes; probably first in the incarcerated population.
    Both of these are bureaucratically irresistible.
    #1) CMS is fuming at the “overcoding” of patient visits. You are supposed to ask “is your grandmother still dead of a heart attack at the age of 82?” Some physicians MIGHT NOT be asking about all those questions that you check off (every time!) on the questionnaire – those rats! They’re getting $65 for the visit, when they should be getting only $55! So taping will come in soon, “to assure provider accuracy and thoroughness,” and hopefully your Pap & pelvic won’t be put on U-Tube by accident.
    #2) RFID chips in prisons are a dream come true – they’re like Harry Potter’s Marauder’s Map, and can show every prisoner in every location – even their distance apart from one another! And with a tweak or two, they can detect illegal drugs in the extracellular fluid – no heroin for you, you evil junkie!
    Of course, these RFID chips can be of immense use for things like continuous monitoring of glucose control in diabetics -

    • EmilyAnon

      “Two more atrocities are on the horizon:
      1) The videotaping of all patient encounters “for the medical record.”

      I’m OK with that if everybody in the room is in the same state of undress as me.

      • http://www.thetakechargepatient.com Martine Ehrenclou

        Emily, Lol!

    • http://www.thetakechargepatient.com Martine Ehrenclou

      Steve, very funny, but sadly, true. Video taping will be next for sure, but laughed out loud when I read your comment about your pap and pelvic on TV. The chips are downright scary. Thanks for commenting.

    • rbthe4th2

      I am absolutely ok with video taping. I’ve had some great docs and they should get paid better and kudos for the excellent care. Not just me telling their admin.

      Next the bad ones I had would have gone on record as to some statements, etc. Either that or they never would have done me or the other half (who’s had her share) the way they did.

  • RenegadeRN

    Darn! I was about to buy a Fitbit…wonder if this comment will be mined and show my insurance company I have been working out lately? ;-)

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