Ques­tions of pri­vacy

Modern Healthcare - - INFORMATION TECHNOLOGY -

Some agen­cies of the fed­eral government earn praise from pa­tient pri­vacy ad­vo­cate Dr. Deb­o­rah Peel; for oth­ers, it’s re­proach. Peel, a psy­chi­a­trist, puts great store in pa­tient con­trol over the shar­ing of their per­sonal in­for­ma­tion, con­sid­er­ing it the sine qua non of pri­vacy rights. Not sur­pris­ingly, the chief health­care in­for­ma­tion tech­nol­ogy rule­maker, HHS, comes up short in her view.

In 2002, HHS re­drafted the pri­vacy rule of the Health In­surance Porta­bil­ity and Accountability Act, re­plac­ing its pa­tient con­sent re­quire­ment for the shar­ing of most pa­tient records with a new pro­vi­sion. The rewrite af­forded “reg­u­la­tory per­mis­sion,” ac­cord­ing to the rule, for hos­pi­tals, physi­cians, in­surance com­pa­nies, phar­ma­cies, claims clear­ing­houses and other HIPAA-cov­ered en­ti­ties to use and dis­close pa­tient data for treat­ment, pay­ment and a long list of other health­care op­er­a­tions with­out pa­tient con­sent.

“Let’s face it,” Peel says, “HHS is the agency that elim­i­nated pa­tient con­trol over elec­tronic med­i­cal records and has re­mained hos­tile to pa­tients’ rights ever since.”

Days be­fore the 2002 re­vi­sion went into ef­fect, a group of pa­tients call­ing them­selves Ci­ti­zens for Health, and more than dozen other plain­tiffs, in­clud­ing Peel, sued HHS Sec­re­tary Tommy Thompson in fed­eral court, al­leg­ing the re­vi­sions vi­o­lated pa­tients’ con­sti­tu­tional rights to pri­vacy. They lost at both the trial and ap­peals-court lev­els and were de­nied a hear­ing on ap­peal to the U.S. Supreme Court in 2006.

Peel launched the not-for-profit Pa­tient Pri­vacy Rights Foun­da­tion in 2003.

She and her fledg­ling or­ga­ni­za­tion lob­bied in 2006 against leg­is­la­tion of­fered by then-Rep. Nancy John­son (R-Conn.) that the health IT in­dus­try strongly sup­ported. John­son’s bill would have pre-empted “bar­ri­ers” to health in­for­ma­tion tech­nol­ogy in state pri­vacy laws, which are of­ten more strin­gent than those in HIPAA.

Fed­eral pre-emp­tion was stripped from the bill in com­mit­tee and it died. Soon af­ter, John­son lost her seat.

“Where I’m coming from is, I’ve spent all this time in a pro­fes­sion with peo­ple be­ing hurt,” Peel says. “Start­ing in the 1970s, when I first let out my shin­gle, peo­ple came to me and said, if I paid you in cash, would you keep my records pri­vate. Now, we’ve got a sit­u­a­tion where you don’t even know where all your records are. We don’t have a chain of cus­tody for our data, or have a data map” to track its lo­ca­tion.

In 2010, Peel pushed for a hear­ing by the pri­vacy and se­cu­rity sub­com­mit­tee of the fed­er­ally char­tered Health IT Pol­icy Com­mit­tee to show­case the wares of de­vel­op­ers of cut­ting-edge con­sent man­age­ment soft­ware such as the Veter­ans Af­fairs De­part­ment and the Na­tional Data In­fra­struc­ture Im­prove­ment Con­sor­tium. The aim was to trump pri­vacy op­po­nents who had ar­gued pri­vacy-pro­tect­ing tech­nol­ogy didn’t ex­ist or wasn’t fea­si­ble.

In a new ef­fort, Peel’s foun­da­tion is co-host­ing with the O’Neill In­sti­tute for Na­tional and Global Health Law at Ge­orge­town Univer­sity the 3rd In­ter­na­tional Sum­mit on the Fu­ture of Health Pri­vacy set for June 5-6.

“I think I am an icon­o­clast and a critic, but I’m very, very in­ter­ested in so­lu­tions, too,” Peel says. “I’m pro­mot­ing mean­ing­ful so­lu­tions and the kind of open and hon­est de­bate that will lead to them.”

Dr. Deb­o­rah Peel

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