The days of doctor/patient privacy are dwindling as more agencies and companies wield technology to peer into your medical records.
Privacy advocates are now bracing for full implementation of the Affordable Health Care Act, which calls for more electronic record keeping and more opportunities for database mining of health records by marketers, credit agencies and law enforcement.
The latest example of this is the FICO medical adherence score. The credit rating company started collecting prescription information in 2011 and applying proprietary algorithms to determine who is most at risk for misusing their medication. The company said it uses the information to help health professionals identify those at risk for under using (or over using) medicine.
Privacy advocates, like Tena Friery of the Privacy Rights Clearinghouse, said the information can easily be used to set health care costs or determine creditworthiness.
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"From a privacy standpoint, there are certainly concerns about this kind of predictive behavioral scoring" Friery said.
HIPAA, the Health Insurance Portability and Accountability Act of 1996, was supposed to put our medical information under lock and key. Privacy attorney Lee Tien of the Electronic Frontier Foundation said the boundaries aren't strong enough.
"Loophole might be too strong a word," Tien said. "But there are channel flows of data to the government that are not sufficiently protected."
Friery agreed and said although HIPAA is a privacy rule, it does recognize the interests of others.
"This could include public safety officials, law enforcement and courts," Friery explained. "Business associates may also have access. This would include billing services, attorneys, auditors, accountants, debt collectors, just to name a few."
With the development of new behavioral predictive models, the potential for database use to qualify (or disqualify) consumers based on medical information is something privacy advocates are very concerned about. Friery said more transparency is needed.
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"Regulators and lawmakers should start by giving consumers the right to any score and scoring model that allows businesses to make judgments about them," Friery said.
Currently, the Medical Adherence Score is not accessible to the public. Tien said people should think carefully before revealing medical information on the internet via symptom checkers or health assessment tests.
"That data is no longer just in your hands, it's in their hands," Tien said. "There is a lot of free stuff on the internet that we love, but there is a catch, and it's usually your privacy."