I’m a science fiction fan, as I’m guessing most of our tech-inclined audience is, and every so often sci-fi hits close to home. Right now I’m reading through Holy Fire by Bruce Sterling a second time. The first time I read it nearly three years ago, it didn’t resonate as powerfully as it does now—good story, but I didn’t feel it connecting to reality anytime soon.
Now, however, I’m getting a different take. In a tiny nutshell, Holy Fire is about life in a post-apocalyptic world that’s been ravaged by plagues, run by the lucky, now-elderly survivors, some of whom have benefitted from life extension treatments doled out by the government.
But access to those treatments and longer life are granted to those who live the healthiest lives, reflected by treatment scores computed by the government. The health of the citizenry is an open book—everyone’s medical histories, every treatment rendered, every documented good and bad habit, is available on the Nets. The story is mainly about the rebellion of one very cautious and connected elderly woman, but some of the insights into such a world likely will strike a chord:
I hate when people play too fair, don’t you? There’s something nasty happening when there’s so much justice in the world … They won’t outlaw alcohol, they won’t even outlaw narcotics, but when you go in for a check-up they take your blood and hair and DNA, and they map every trace of every little thing you’ve done to yourself. It all goes right on your medical records and gets splashed all over the net. If you live like a little tin saint, then they’ll bend heaven and earth for you. But if you act the way I acted for 96 years … Ever see my medical records, Mia? I used to drink a lot. What’s life without a drink?
One reason this and other passages mean more now on second-read is that we inexorably are moving to a health care model where your most intimate and personal data is being seen by many eyes, for many seemingly logical reasons. Last fall the federal government announced its intention to create a massive claims database for government health plans (see story).
The database ostensibly will be used by the Office of Personnel Management to assess the “best value” for enrollees and taxpayers. There’s no reason to think the government will use de-identified data for anything but the greater good, but some aspects of the project raised the hackles of health care privacy experts, and should catch the attention of anyone tracking health care trends, notably “data in the national warehouse could include name, Social Security number, date of birth, gender, phone number, address, spouse and dependent names and addresses, and information on employment, providers, coverage, procedures and diagnoses, along with related provider charges and reimbursement.”
The mantra of this industry is that data is good, and it is. So good, in fact, that health care’s No. 1 priority is finding ways to exchange that data—as much as possible and as fast as possible—for the greater good. You can’t question that goal now, when most physicians and related care providers can’t get access to simple information like lab results, or allergy and medication lists that were compiled for the sole purpose of helping caregivers make the right clinical decisions. But as the industry makes those connections, and we move past this Paleolithic Age of data exchange, decisions are going to be made about what else we’re going to do with that data. Because as technology marches forward, there’s always going to be a what else, in fact a never-ending stream of what else’s.
Many clinical leaders believe we are facing our own health apocalypse, and the lead horseman is Obesity, with Diabetes running hard beside. The national consequences of obesity are terrifying, and many of the choices that lead to obesity, and the numerous downstream consequences of being overweight, are chapters in the books of our medical histories. Many of our leaders have come to the conclusion that something big has to be done, something to stem this tide and coerce people into making better lifestyle choices.
If it comes to that, then we’ll remember these next few years as when the seeds were planted. Health reform will bring many millions of citizens under the umbrella of government care, most of whom are low income and trailing the majority of the population in so many economic, education and health indicators. That will be a segment of the population many will be inclined to use as a test bed for more aggressive intervention into personal lives, for well-intentioned programs that strip away layers of personal privacy as well as dignity. In the midst of a national health crisis, policymakers will be tempted to use the data feeding into the federal ecosystem to devise numerous carrots and sticks to improve population health and cut the costs of expanding federal programs. However, the carrots apparently aren’t working too well, so I’m guessing we’re about to enter the age of sticks—or cudgels.
The reason for this column was not to ask you to fear the future, but to remind I.T. leaders that they will play a part in shaping that future, one in which so many paths could be followed. How you’ll use secondary data, what forms of clinical data exchange you’ll take part in, what kinds of privacy protections you’ll technologically wrap around sensitive information … your decisions will play a role in shaping our future, if you believe it or not. Time and time again I.T. implementations and analytical strategies we’ve reported on have caught the eye of federal and state officials and become embedded in national initiatives. Today’s decisions and the precedents they establish shape the future, and we all need to think about what precedents we’re setting and how they align with our moral and ethical compasses.
Think about that, and wonder what your treatment rating might be.
The polity. The global polity. It’s like a government run by your grandmother. A wise and kindly little old lady with a plateful of cookies and a headman’s ax.
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