‘Re­search cor­po­ra­tions’ us­ing pa­tient data with­out con­sent

Modern Healthcare - - COMMENT -

Re­gard­ing “Re­form Up­date: Unit­edHealth’s Op­tum Labs adds univer­si­ties, in­surer and Merck” (ModernHealth care.com, Sept. 10), the pub­lic has never agreed or given their con­sent to the use of their per­sonal health data by “re­search cor­po­ra­tions” such as Op­tum.

The Op­tum business model, (i.e., buy­ing, sell­ing and trad­ing the na­tion’s health data), is frankly an un­fair and de­cep­tive trade prac­tice. Pa­tients don’t know about Op­tum; the company has no di­rect re­la­tion­ship with pa­tients; and pa­tients are given no choice about whether their data can be used by sec­ondary and ter­tiary “re­search cor­po­ra­tions” like Op­tum.

Loop­holes in the Health In­surance Porta­bil­ity and Ac­count­abil­ity Act ap­pear to grant un­fet­tered ac­cess to health data with­out con­sent for re­search or pub­lic health uses, but gov­ern­ment and in­dus­try are ig­nor­ing the fact that HIPAA is the “floor” for health data pri­vacy pro­tec­tions, not the “ceil­ing.”

This kind of business en­ter­prise is patently un­fair. Ac­cord­ing to the orig­i­nal 2001 HIPAA pri­vacy rule, pa­tients were sup­posed to eas­ily be able to get elec­tronic copies of their records. It’s now 13 years later and most pa­tients still can’t get ac­cess to their own health data—yet Op­tum and other com­pa­nies with no di­rect con­nec­tion to or re­la­tion­ship with pa­tients data-mine and use their data with­out their knowl­edge or con­sent.

Alan Westin did a very de­tailed study about pa­tients’ at­ti­tudes to­ward open ac­cess to per­sonal health data in re­search for the In­sti­tute of Medicine.

Only 1% of the pub­lic would ap­prove of open ac­cess to their health data for re­search. If the data were de-iden­ti­fied and there was in­sti­tu­tional re­view board ap­proval, still only 19% of the pub­lic would agree to re­search ac­cess to their health data with­out con­sent.

The prob­lem is, when pa­tients know that elec­tronic sys­tems can­not be trusted, they act in ways that en­dan­ger their health and lives. Nearly 38 mil­lion peo­ple a year hide in­for­ma­tion to try and pro­tect their pri­vacy. Some 5 mil­lion to 6 mil­lion peo­ple a year de­lay or avoid treat­ment for can­cer, de­pres­sion and STDs for the same rea­son: to try to keep sen­si­tive health in­for­ma­tion pri­vate.

Would we tol­er­ate a pa­per medica-lrecord sys­tem that harmed 40 mil­lion to 50 mil­lion peo­ple a year or drove then away from treat­ment?

Dr. Deb­o­rah Peel Founder and chair Pa­tient Pri­vacy Rights Austin, Texas

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