Con­sent con­sen­sus

Providers pon­der more-strin­gent rules on privacy

Modern Healthcare - - SPECIAL FEATURE -

For many pa­tients, con­sent is the sine qua non for med­i­cal-records privacy. When a pa­tient can give or with­hold con­sent, it trans­lates into a pa­tient’s right to al­low or dis­al­low the shar­ing of their med­i­cal in­for­ma­tion.

Nearly three out of four re­spon­dents to this year’s Mod­ern Health­care/mod­ern Physi­cian Sur­vey of Ex­ec­u­tive Opin­ions on Key In­for­ma­tion Tech­nol­ogy Is­sues said their or­ga­ni­za­tions seek a pa­tient’s con­sent be­fore re­leas­ing their records to out­side en­ti­ties.

Opin­ions var­ied, how­ever, on a fa­vored way to ob­tain that con­sent.

There were five ques­tions about privacy in this year’s sur­vey, in­clud­ing three about con­sent, two of which were new.

The goal was to high­light provider at­ti­tudes about privacy and con­sent as HHS rule­mak­ers pon­der more strin­gent privacy-rule re­vi­sions re­quired un­der the Amer­i­can Re­cov­ery and Rein­vest­ment Act of 2009. The stim­u­lus law amended the Health In­sur­ance Porta­bil­ity and Ac­count­abil­ity Act of 1996, a key fed­eral health­care privacy law.

The new rules are likely to in­clude a limited restora­tion of a pa­tient’s fed­eral right of con­sent that was stripped away by HHS rule­mak­ers in 2002. The ARRA af­fords pa­tients the right to have providers with­hold from their in­sur­ance com­pa­nies in­for­ma­tion about their care if pa­tients pay for that care out of pocket. Also, many health in­for­ma­tion ex­changes op­er­ate where pa­tient con­sent is re­quired un­der state privacy laws.

Not­ing that the 2002 HIPAA privacy rule grants “reg­u­la­tory per­mis­sion” for providers to dis­close a pa­tient’s med­i­cal records with­out their con­sent for treat­ment, pay­ment and other health­care op­er­a­tions, the sur­vey asked: “Does your or­ga­ni­za­tion seek pa­tient con­sent be­fore dis­clos­ing their med­i­cal records to other providers out­side your or­ga­ni­za­tion (in­clud­ing health in­for­ma­tion ex­changes)?”

An over­whelm­ing ma­jor­ity of sur­vey re­spon­dents (73%) in­di­cated they do seek pa­tient con­sent; an­other 17% said they don’t; and 10% of re­spon­dents were un­sure.

Re­spon­dents also were asked which method they be­lieve “pa­tients should be able to use” to man­age their par­tic­i­pa­tion in health in­for­ma­tion ex­changes or re­gional health in­for­ma­tion or­ga­ni­za­tions.

Half of re­spon­dents in­di­cated pa­tients should use the “opt out” method in which con­sent is as­sumed by de­fault and a pa­tient must take some form of ac­tion to re­move them­selves from par­tic­i­pa­tion.

The next most pop­u­lar choice, se­lected by 18% of sur­vey re­spon­dents, was to af­ford pa­tients “gran­u­lar” con­sent, in which pa­tients may choose to share some of their med­i­cal records but with­hold oth­ers, which may in­clude more sen­si­tive in­for­ma­tion such as records of treat­ment for drug and al­co­hol abuse, men­tal health or sex­u­ally trans­mit­ted dis­eases. The choices of “opt in” and “no choice” each were cho­sen by 16% of sur­vey re­spon­dents.

“I think that gran­u­lar will be to too hard to man­age,” says Dr. Howard Landa, who chose opt-out. Landa is chief med­i­cal in­for­ma­tion of­fi­cer for 387-bed Alameda County Med­i­cal Cen­ter in Oak­land, Calif., and vice chair­man of the As­so­ci­a­tion of Med­i­cal Di­rec­tors of In­for­ma­tion Sys­tems, a pro­fes­sional as­so­ci­a­tion for physi­cian in­for­mati­cists. Landa says one of the ex­pected ben­e­fits from health in­for­ma­tion ex­change is its cost-con­tain­ing po­ten­tial by re­duc­ing du­plica­tive tests be­cause test re­sults will be­come widely and read­ily avail­able.

“My feel­ing is you need to make the pa­tient aware that you’re do­ing this and what would hap­pen if they don’t par­tic­i­pate,” Landa says.

“With opt-in, it will never hap­pen,” he says. “If ev­ery­one has to state specif­i­cally, ‘You can send that,’ it’s not go­ing to get sent and tests will be re­peated.” Landa, a veteran in­for­mati­cist, is re­fer­ring to the ex­pe­ri­ences of ex­changes that use opt-in, which tend to have lower par­tic­i­pa­tion rates than those that use opt-out.

Or, Landa says, later on when the pa­tient wants or needs their in­for­ma­tion shared, “you’ll waste a lot of time and en­ergy” work­ing their con­sent back into the sys­tem.

“I love the whole thought of gran­u­lar­ity,” he says, “but I don’t think it’s pos­si­ble with­out a whole lot of sup­port that’s not go­ing to be there.”

Steven Lit­tle, how­ever, chose gran­u­lar con­sent. Lit­tle is pres­i­dent and CEO of 167-bed Ag­ne­sian Health­care in Fond Du Lac, Wis.

“It shouldn’t be a mass mail­ing,” he says. “I be­lieve as in­di­vid­u­als we should have a right to pick and choose where that in­for­ma­tion goes to pro­tect our own privacy. That’s im­por­tant to me on a per­sonal ba­sis as well as be­ing a health­care provider.”

Dr. Deb­o­rah Peel, founder of the Pa­tient Privacy Rights Foun­da­tion in Austin, Texas, had a mixed re­ac­tion to the sur­vey re­sults. Peel was less than thrilled by even 73% of re­spon­dents say­ing their or­ga­ni­za­tions seek pa­tient con­sent be­fore dis­clos­ing their in­for­ma­tion to out­siders.

“Peo­ple are now us­ing the word con­sent, but it’s not the same as in­formed con­sent,” Peel says. “It’s more a kind of blan­ket form that’s shoved in front of some­body and they think that counts.”

But Peel says she is en­cour­aged by the Mod­ern Health­care sur­vey data that in­di­cated a ma­jor­ity of re­spon­dents were un­fazed by more strin­gent ARRA pro­tec­tions (See chart).

“The peo­ple on the front lines seem to sup­port the pa­tient’s rights and ex­pec­ta­tions,” Peel says. “They didn’t seem to think putting into ef­fect some of the privacy pro­tec­tions would have much im­pact.”

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