I confess to a love-hate relationship with data. I find facts (not factoids) essential to decision-making, and analytics an intelligent tool.
Yet I’m uneasy when I read the ways in which individual privacy continues to be eroded even as, theoretically, some of the blurring of informational boundaries is convenient and even, some might say, in our ‘best interest.’
Allow me to clarify my concern: How do we feel about the thinly veiled profit motive masquerading as improved, targeted healthcare services?
Just how much merging of personal data with medical need is helpful to a physician?
Is anything in the “public” arena fair game?
And what if that information is acquired without our express knowledge, and used to direct well-heeled patients toward certain treatments, and to discourage or eliminate others?
Is this effectively “business as usual” as we’ve all become healthcare consumers?
If Health Care Providers Know Your Consumer Behavior
What is your reaction to sharing the details of your routine purchasing behavior with your doctor? With a group of doctors you may or may not know? What about accessibility of those details to the institutional providers of your medical care?
In a disturbing article in The Times, “When a Health Plan Knows How You Shop,” Big Brother (setting prices and treatment plans) is using consumer buying habits to determine (assume) lifestyle characteristics that are then utilized to direct treatment.
Natasha Singer reports on a project out of the (non-profit) University of Pittsburgh Medical Center. The project is described as being:
… at the forefront of an emerging field called predictive health analytics, intended to improve patients’ health care outcomes and contain costs.
It seems that household (purchasing and other) details can be predictive:
… Mail-order shoppers and Internet users, for example, were likelier than some other members to use more emergency services.
Theoretically, one might use data as follows:
… to steer those patients to primary care physicians or specialists who can provide care that is more coordinated, more consistent and less costly than sporadic emergency-room visits…
Forecasting models make sense, right? Are some details more “legitimate” than others, for example past claims and prior ER visits?
But here is the crux of the conflict when it comes to using consumer data mining and applying it to healthcare services, as some experts fear:
… such practices could ultimately result in the inequitable provision of medical care.
Do read the article. It may be eye-opening, though of course the purpose of aggregating data is to assist corporate (and other) decision-making. Why would we think that healthcare institutions (corporations) would be different?
Medical Privacy Issues in Social Media
How about our responsibility in the erosion of personal data safeguards, given the careless ways we compromise ourselves in social media or shrug when the topic of online privacy is raised?
This 2013 article provides an another perspective: “Is Your Doctor Spying on Your Tweets?”
While the writer illustrates the issues with a specific case in which a physician was asked to render an opinion about the health habits of a potential liver transplant candidate, issues of medical privacy are confused by what lives “freely” on the Internet. In this example, tweets that show the patient drinking knocked him out of the running for his transplant.
Were those tweets fair game? Is anything you can find on the Internet fair game? Is this true of anything that is posted “publicly?”
The article reminds us:
… you need to realize that information you put up on social media sites may wind up being used by your doctor, hospital, psychologist, school nurse or drug counselor.
Well, it certainly isn’t a stretch, is it?
Just as we’ve come to recognize that anything we post may find its way to a potential employer, ditto on others who make decisions about our future.
But do you really want your physician checking you out via your tweets, your Instagram, and your Facebook updates? How do we establish some sort of boundaries?
Sharing Health Information in Online Communities
Many of us join online communities to learn from one another and exchange information, including details pertaining to our health. This is helpful.
Sure, we make considered choices as to what we say and when; we may avail ourselves of anonymity or decide not to bother.
But we don’t anticipate that sharing in one context will find its way into another. Perhaps we should.
Still, do we really want our health insurance company to funnel us into options and away from others, based on what they believe to be our capacity to foot the bill? Based on a set of modeled assumptions and predictors that rely on consumer behavior?
I remain troubled by the unauthorized use of gleaned (or modeled) information that we are unaware of, though perhaps we should assume that privacy simply no longer exists.
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I don’t think any doctor has any time to be spying on anyone’s tweets.
I hate it when the coupons come for specific things the company knows I had purchased. It feels strange, a bit invading. But I am the one who lets them scan my little card so then I can get those coupons. (Don’t have many of those little club cards, just a few).
And what about when your insurance company sends you a free online health analysis questionnaire so that you can make better choices about diet, exercise, etc. They ask all kinds of things. Do I want my current health insurance company to know about every health care problem I have had during my life? No.
Re doctors utilizing online information, that’s what I thought, too, Lunaboogie. But after reading the NBC article, and knowing that people do contract others for social media, the ability to scan for certain information becomes more plausible. Certainly, in specific circumstances, though I’d like to believe that it’s irregular and unacceptable.
I am so glad more people are becoming aware of the growing proliferation of businesses gathering our online and real-time shopping data. I refuse to sign up for discount cards and am closing all such accounts possible. While these things may seem like an innocent way to get a “discount” the reality is they are just another way for big businesses to track and trend and sell and ultimately, exert pressure or control.
Health care concerns are businesses, just like any other. They will use whatever methods they can to make money.
I couldn’t agree more, Gwen. But imagine if health care weren’t a business, as is the case in other civilized countries.
I agree. There’s too much of this going on. The latest Facebook issue with uninformed consent comes to mind–there was absolutely NO REASON that I can think of that they needed that study. What would they do, give preferential treatment to positive posts? Eliminate negative ones? It’s a scary thought.