State to seek Oba­macare pa­tient data

Cov­ered Cal­i­for­nia says mas­sive min­ing of in­sur­ance in­for­ma­tion is es­sen­tial, but it raises pri­vacy wor­ries.

Los Angeles Times - - FRONT PAGE - By Chad Ter­hune

Cal­i­for­nia’s health in­sur­ance ex­change wants to know why you got sick this sum­mer.

With 1.4 mil­lion peo­ple en­rolled, the state- run mar­ket­place is em­bark­ing on an am­bi­tious ef­fort to col­lect in­sur­ance com­pany data on pre­scrip­tions, doc­tor vis­its and hos­pi­tal stays for ev­ery Oba­macare pa­tient.

Cov­ered Cal­i­for­nia says this mas­sive data- min­ing pro­ject is es­sen­tial to mea­sure the qual­ity of care that pa­tients re­ceive and to hold health in­sur­ers and med­i­cal providers ac­count­able un­der the Af­ford­able Care Act.

The state in April signed a f ive- year, $ 9.3- mil­lion con­tract with Tru­ven Health An­a­lyt­ics Inc. of Michigan to run the data­base.

The ef­fort has raised ques­tions about pa­tient pri­vacy and whether the state is do­ing enough to in­form con­sumers about how their data will be used. There are also wor­ries about se­cu­rity amid mas­sive breaches at An­them Inc. and other health in­sur­ers af­fect­ing mil­lions of Amer­i­cans.

Peter Lee, ex­ec­u­tive di­rec­tor of Cov­ered Cal­i­for­nia, said pro­tect­ing sen­si­tive in­for­ma­tion was a pri­or­ity and that con­sumers stand to ben­e­fit from the col­lec­tion of med­i­cal data. He ac­knowl­edged the state had no plans to let con­sumers opt out and keep their records out of the data­base.

“To un­der­stand the qual- ity of care be­ing pro­vided, you need ev­ery­body in,” Lee said. “With­out the data, we are only de­liv­er­ing on half the prom­ise of the Af­ford­able Care Act. We have to get be­yond mea­sur­ing ac­cess by anec­dote.”

For in­stance, the ex­change will look to track how many di­a­bet­ics are hav­ing

their chronic con­di­tion man­aged cor­rectly and how many screen­ing tests for can­cer led to early di­ag­no­sis and treat­ment.

Many health- pol­icy ex­perts ap­plaud Cal­i­for­nia’s ef­forts to f lex its mus­cle as a ma­jor healthcare pur­chaser to de­mand data that in­sur­ers are of­ten re­luc­tant to share.

Public dis­clo­sure of health plan per­for­mance could put pres­sure on in­sur­ers to bet­ter serve pa­tients, giv­ing the state another bar­gain­ing chip in rate ne­go­ti­a­tions.

But the re­cent na­tional de­bate over bulk col­lec­tion of phone records has high­lighted the public’s wari­ness about the gov­ern­ment amass­ing vast amounts of per­sonal in­for­ma­tion.

“There is po­ten­tial for so much public good, but there is a greater public good in pro­tect­ing pri­vacy and se­cu­rity,” said Michelle De Mooy, deputy di­rec­tor for con­sumer pri­vacy at the Cen­ter for Democ­racy and Tech­nol­ogy in Washington. “I think ask­ing per­mis­sion is ab­so­lutely in­te­gral. It is not the state’s data.”

The ex­change is mind­ful of those con­cerns, Lee said, and plans to seek in­put from con­sumer groups and med­i­cal ex­perts on how best to op­er­ate the pro­gram.

Health in­sur­ers won’t be­gin send­ing pa­tient data to Tru­ven un­til this fall at the ear­li­est. But the in­for­ma­tion could in­clude med­i­cal claims that were in­curred ear­lier in the ex­change.

And the ex­change em­pha­sized that per­sonal health in­for­ma­tion would be held by Tru­ven; only data stripped of iden­ti­fy­ing in­for­ma­tion will be shared with the state for re­search pur­poses.

Tru­ven re­ferred ques­tions about the pro­gram to the ex­change.

In its no­tice of pri­vacy prac­tices online, the ex­change ad­vises peo­ple it can col­lect health data and “we can use or share your in­for­ma­tion for re­search.”

Glenn Co­hen, a pro­fes­sor at Har­vard Law School and ex­pert on the ethics of us­ing healthcare data, said the lack of an opt- out was trou­bling be­cause many ex­change cus­tomers don’t have the op­tion to shop else­where.

Nearly 90% of Cov­ered Cal­i­for­nia cus­tomers re­ceive a fed­eral pre­mium sub­sidy, and they can ac­cess those tax dol­lars only through the ex­change.

“I worry about these peo­ple be­ing a cap­tive au­di­ence,” Co­hen said. “The more voice you give to pa­tients in this process, the more eth­i­cally jus­ti­fied you are do­ing this with big data.”

Cov­ered Cal­i­for­nia has stum­bled in the past over its han­dling of con­sumer in­for­ma­tion.

It drew com­plaints dur­ing the Oba­macare roll­out for shar­ing ap­pli­cants’ con­tact in­for­ma­tion, with­out their knowl­edge, with in­sur­ance agents and en­roll­ment coun­selors.

In re­sponse, state law­mak­ers have pushed for leg­is­la­tion that would bar the dis­sem­i­na­tion of names, emails and phone num­bers with those third par­ties un­less the per­son re­quested help.

State Sen. Joel An­der­son ( R- San Diego), who is spear­head­ing the ef­fort, said the ex­change must tread care­fully or risk los­ing the public’s con­fi­dence.

“I want to see Cov­ered Cal­i­for­nia suc­ceed, but I want cit­i­zens to be re­as­sured we aren’t play­ing fast and loose with their data,” An­der­son said.

“That hurts you in the long run.”

For their part, health in­sur­ers said they sup­ported the ex­change’s ef­forts but wanted to make sure the data re­mained well- pro-

‘ To un­der­stand the qual­ity of care be­ing pro­vided, you need ev­ery­body in.’

— Peter Lee, ex­ec­u­tive di­rec­tor of Cov­ered Cal­i­for­nia


In­sur­ers are ac­cus­tomed to shar­ing ag­gre­gated claims data with large em­ploy­ers, to show them trends in med­i­cal costs and where the most ex­pen­sive bills are com­ing from. De­tails on in­di­vid­ual em­ploy­ees are with­held, in keep­ing with pri­vacy laws.

“For the vast ma­jor­ity of Amer­i­cans, this in­for­ma­tion is al­ready shared on a daily ba­sis with pro­tec­tions in place,” Lee said.

The ex­change got an early glimpse at the power of en­rollee data last year dur­ing ne­go­ti­a­tions with health in­sur­ers.

It shared de­tails on Cov­ered Cal­i­for­nia en­rollees with re­searchers at UC San Fran­cisco and UC San Diego, and those names were com­pared with a state data­base of pa­tients who re­ceived hos­pi­tal care in 2012.

The over­all health of peo­ple who signed up at the end of en­roll­ment in April 2014 was 11% bet­ter than the f irst en­rollees in Oc­to­ber 2013, based on risk scores as­signed by re­searchers.

Lee said the ex­change used that data — show­ing an inf lux of health­ier ap­pli- cants — to ne­go­ti­ate lower premi­ums from in­sur­ers, sav­ing con­sumers more than $ 100 mil­lion this year. The av­er­age rate in­crease statewide was 4.2%; 2016 rates will be an­nounced next month.

Dr. An­drew Bind­man, the lead UC San Fran­cisco re­searcher on the ex­change’s 2014 en­roll­ment, said the public’s pri­vacy con­cerns are un­der­stand­able and must be ad­dressed to re­al­ize the ben­e­fits of big data in healthcare.

“This shouldn’t be a mys­te­ri­ous thing the public never knows about,” he said.

I rfan Khan Los An­ge­les Times

PEO­PLE STAND in line at Panorama Mall to en­roll in the Cov­ered Cal­i­for­nia health ex­change in 2014. The Oba­macare mar­ket­place is em­bark­ing on an am­bi­tious ef­fort to col­lect in­sur­ance com­pany data.

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