‘Research corporations’ using patient data without consent

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