How did this happen?

A federal agency, not Congress, took away your right to control your health information. Your right to control the use and disclosure of your personal health information was eliminated in 2003 by regulatory changes made to HIPAA, the Health Insurance Portability and Accountability Act.  HIPAA is a complex 1,500 page set of rules covering things such as the transfer of health insurance when you change jobs.

The changes mean that millions of strangers, as well as employers, can use your health records for reasons that have nothing to do with your treatment or improving your health care. In an era of Electronic Health Records (EHRs) and Personal Health Records (PHRs), the problem could get worse as your personal health information is more easily accessible. Though the promise of electronic records is great, privacy is the key to realizing the potential benefits of these new and innovative systems.

The Elimination of Consent

1996 Congress passed HIPAA, but did not pass a federal medical privacy statute, so the Dept. of Health and Human Services (HHS) was required to develop regulations that specified patients’ rights to health privacy.

PL 104-191, Sec 264

“… the Secretary of Health and Human Services shall submit to [Congress]…detailed recommendations on standards with respect to the privacy of individually identifiable health information.”
2001 President Bush implemented the HHS HIPAA “Privacy Rule” which recognized the “right of consent”.

65 Fed. Reg. 82,462

“….a covered health care provider must obtain the individual’s consent, in accordance with this section, prior to using or disclosing protected health information to carry out treatment, payment, or health care operations.”
2002 HHS amended the HIPAA “Privacy Rule”, eliminating the “right of consent”.

67 Fed. Reg. at 53,211
“The consent provisions…are replaced with a new provision…that provides regulatory permission for covered entities to use and disclose protected health information for treatment, payment, healthcare operations.”

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