What’s in your wal­let? ‘Big data’ wants to tell doc­tors and health plans

Modern Healthcare - - COMMENT - By Carol Levine

Does pri­vacy still mat­ter? Ac­cord­ing to Face­book founder Mark Zucker­berg, pri­vacy is no longer a “so­cial norm.” But a re­cent re­port from the Pew Re­search Cen­ter found that Americans are in­deed con­cerned about their pri­vacy.

More than half (55%) of survey re­spon­dents said that the “state of your health and the med­i­ca­tions you take” was “very sen­si­tive” in­for­ma­tion, sec­ond only to So­cial Se­cu­rity num­bers. Fewer peo­ple con­sid­ered in­for­ma­tion about their re­la­tion­ship his­tory (40%), re­li­gious or spir­i­tual views (22%), or po­lit­i­cal views (20%) as very sen­si­tive. At the bot­tom of the list, only 8% con­sid­ered “ba­sic pur­chas­ing habits” very sen­si­tive.

What the re­spon­dents might not have re­al­ized is that “big data” can link their pur­chas­ing habits to their health in­for­ma­tion. So far, dis­cus­sions of big data in health­care have fo­cused pri­mar­ily on us­ing the vast ar­chive of clin­i­cal in­for­ma­tion col­lected in elec­tronic health records and fi­nan­cial data from in­surance claims to track and an­a­lyze uti­liza­tion, costs and other fac­tors—data of im­por­tance to providers and pay­ers.

But con­sider big data from a dif­fer­ent per­spec­tive—the enor­mous amount of per­sonal in­for­ma­tion that can be drawn from pub­lic sources such as cen­sus records and credit re­ports, and from cus­tomer loy­alty pro­grams at lo­cal and na­tional re­tail­ers, credit card pur­chases and so­cial me­dia. Should this non­med­i­cal in­for­ma­tion be read­ily avail­able to doc­tors and health plans?

Caroli­nas Health­Care Sys­tem, which cov­ers 2 mil­lion peo­ple, is al­ready work­ing with data bro­kers to use such in­for­ma­tion to de­velop an al­go­rithm to iden­tify pa­tients whose un­healthy choices put them at high risk of hos­pi­tal­iza­tion and read­mis­sion. Cur­rently, doc­tors will get only a risk score, but other pro­grams may soon take their own deep dives into in­di­vid­ual items.

Pri­vacy is a foun­da­tional prin­ci­ple of med­i­cal ethics and health­care prac- tice. What hap­pens in the doc­tor’s of­fice stays there—un­less, of course, there are valid rea­sons to dis­close the in­for­ma­tion to other agen­cies and in­di­vid­u­als. Many sen­si­tive top­ics come up in med­i­cal en­coun­ters, but they are typ­i­cally ini­ti­ated by a provider’s ques­tion or a pa­tient’s dis­clo­sure. Us­ing non­med­i­cal data from fi­nan­cial or pub­lic records to ini­ti­ate dis­cus­sions about smoking, drink­ing, un­healthy eat­ing, un­safe sex­ual ac­tiv­ity or other be­hav­iors turns this view of pri­vacy on its head.

Pa­tients may with­hold in­for­ma­tion—yes, even lie—to their doc­tors for many rea­sons. Some un­healthy be­hav­iors are re­lated to cul­tural, psy­cho­log­i­cal and eco­nomic con­di­tions that are dif­fi­cult to change. It’s not that pa­tients don’t know they should stop smoking or lose weight; they don’t want to be shamed and blamed for some­thing that gives them plea­sure and seems out of their con­trol— or both.

Those who claim that “pri­vacy is passé” point out that peo­ple are more likely to re­veal in­for­ma­tion about their habits on Face­book or other so­cial me­dia than they are to tell their health­care providers. And some pa­tients, of­ten those with chronic ill­nesses, set up their own in­for­ma­tion ex­changes on sites such as MyHealthTeams.

Th­ese ex­am­ples are very dif­fer­ent from a sce­nario in which a doc­tor chal­lenges a pa­tient’s de­nial about fol­low­ing a diet, for ex­am­ple, by cit­ing the charges on a restau­rant loy­alty card, or a health plan raises pre­mi­ums for those who fail the “wal­let test.” If the new spend­ing in­for­ma­tion is likely to change a doc­tor’s or health plan’s be­hav­ior, the doc­tor-pa­tient re­la­tion­ship is almost cer­tain to be af­fected, and quite pos­si­bly for the worse.

We have come to ex­pect mar­keters to use spend­ing in­for­ma­tion avail­able through big data to sell prod­ucts, but con­sumers can al­ways ig­nore a mar­keter’s ads. The blan­ket con­sent pa­tients sign for use of their med­i­cal in­for­ma­tion does not typ­i­cally in­clude con­sent to mine their fi­nan­cial records for po­ten­tially un­healthy pur­chases.

Work­ing with pa­tients who can­not or will not change their un­healthy be­hav­iors can be frus­trat­ing to prac­ti­tion­ers, in­sur­ers and pol­i­cy­mak­ers. It is dif­fi­cult as well for the pa­tients them­selves who may want to change, but who lack the fi­nan­cial re­sources and so­cial support to suc­ceed.

Re­duc­ing risky be­hav­ior is cer­tainly an im­por­tant pub­lic health goal. Doc­tors and health plans can best serve this goal by re­spect­ing pa­tient au­ton­omy, build­ing trust in health­care and of­fer­ing prac­ti­cal ways to meet re­al­is­tic per­sonal bench­marks. Pa­tients are unique in­di­vid­u­als, not col­lec­tions of data points, no mat­ter how big the source.

Carol Levine di­rects the Fam­i­lies and Health Care Project at the United Hos­pi­tal Fund in New York City. She is a fel­low of the Hast­ings Cen­ter, a bioethics re­search in­sti­tute in Gar­ri­son, N.Y.

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