Many brilliant people with the very best of intentions felt or expressed dismay this week at a good article with the body-snatchers-invasion-class title, “Your Doctor Knows You’re Killing Yourself. The Data Brokers Told Her.” Surely the marauding hordes of data brokers (the targets of Federal Trade Commission investigations!), should be kept far away from the sacrosanct relationship between doctor and patient! The article ends with an ethicist intoning that the strategy “is very paternalistic toward individuals, inclined to see human beings as simply the sum of data points about them.”
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I thought about that article and that ethicist yesterday as I sat with my family in a travel clinic giving us the shots we would need for a cultural exchange program in a village in India. The great doctor and nurse in the clinic knew nothing about us (Well, thanks to an electronic medical record, they knew about 1 pain med I didn’t even take a decade ago, which they dutifully asked me about). They didn’t even know any of the information we had entered on-line for them this week (The nurse explained that “On-line, you’re just a number.”).
My mind flashed as it often does between many years of helping friends in the public health world as they spent many years testing hypotheses in search of truths applicable generally across vast populations and my current life working with big data initiatives producing real-time, actionable, individual-focused information. I thought how eager the four of us (and I assure you that my professor wife and clever children are not big data lawyers) would have been for this doctor and nurse to get the scoop on us, in the case of the children to engage them more and in the case of the parents to give us the warnings we most need to hear. And I thought as I have for many years about paternalism in medicine.
I got into health care law in 1982, my first year of law school, in part because that was the year Paul Starr released his seminal book, “The Social Transformation of American Medicine.” It was a great study on the creation followed by the corporatization of a profession. There was a lot of talk from leaders as well as scholars in those days about medical costs and the profession of medicine; I for one will never forget Joe Califano’s “Medicine is too important to be left to doctors and politicians.” So many big failures and little successes followed; the constant of massive federal lobbying (in my humble opinion) served as birth control and an occasional abortion against effective health care reform.
If we fast-forward to today, so much has not changed yet in health care. The biggest changes on the immediate horizon may be role of apps, mobile devices and home monitoring in personal health. As even the U.S. Supreme Court acknowledged this week, mobile devices have our whole lives on them, incredibly rich information so much of which bears directly on our health. The next iterations of iOS and Android will make integration of that information work better than ever. And the data on the fitness apps to date shows that they become effective (like Weight Watchers and AA) when others are watching. When others are watching, a health or fitness app becomes an effective “commitment device;” when others are not watching, those apps can be a little like Odysseus tying himself to the mast with a slip knot, only to crash his ship into the same rocks that have sunk countless New Years’ resolutions.
In our “bowling alone” society distrustful of the unregulated purveyors of health and fitness apps, however, where can you find a trustworthy ship or crew to serve as your commitment device? Oh, look! The big failures to change our health care system into something better have left your doctor–not so deprofessionalized at all–as someone you trust! And look! Your doctor is regulated by relatively stringent privacy and information security rules, and if she enters a relationship with one of those apps in which she shares your information or the app creates information on her behalf, it is subject to most of those same regulations! And then (to get back at last to the beginning of this post) there is all the other information on you both on and off your mobile device, information, e.g., about your food, your activity levels and your stressors; that information, too, when received by your provider, becomes subject to not only those privacy and information security rules, but to more stringent state rules and the rules of professional ethics.
Finally, I ask you this: Which is the most and least paternalistic to you as a patient: (1) to give you the choice about whether your healthcare provider really knows you or knows only your self-reported issues, (2) to force her to know things about you that you haven’t reported, or (3) to make sure that she tells you what to do knowing only what you have just told her? With electronic medical records, we have apparently already made the choice for (2) and are spending a great deal of money to try to make it work. Much more inexpensively, health care providers can have much richer information about you and your health than is often available on an EMR, and can be the most trusted repository available for that information. I submit to you for that reason that providers will not be serving their patients well if in the very near future they are not taking and using information from data brokers, at least giving patients the choice described in (1), and privacy advocates and regulators will be preventing important improvements in our health and healthcare systems if they prevent providers from taking and using such information.