Consumer group: States collecting health data without consent

Federal funds have paved the way for state health departments to store patient information in massive databases --often without their consent, according to a report by the consumer advocacy group the Citizens' Council for Health Freedom (CCHF).

The report says an array of collection systems have been created under the banner of "public health" and fall outside the protections that most people assume HIPAA covers, according to an executive summary. The report details information stored state by state, but is based on data state health departments sent in during a CCHF study from 2005-2006.

It focuses on four common state information-collection systems:

  • Birth defects surveillance systems
  • Cancer registries
  • Newborn screening databases
  • Immunization registries

"What we're trying to tell the public--and what we're trying to show the public--is how state government is capturing medical record information and tracking patients from birth to death, all in the name of 'public health,'" Twila Brase, co-founder of CCHF, told OneNewsNow.

"So if you have a medical condition deemed trackable by the government, the data is taken and you are not informed; you have no choice in the matter. If you are allowed to opt out, you leave behind a government record of your objection, so you can never leave," Brase said.

CCHF says that HIPAA and the HITECH Act together allow more than 2.2 million entities to access patient medical data without patient consent. The report calls this data-gathering a "significant intrusion" by the government and a threat to public trust.

The group is urging people to press for legislation making "opt in" requirements the default for participation in public health tracking, rather than "opt out."

Research from Bloomberg recently also took aim at state health department information tracking. States often sell this database information to marketers and others for as little as $50. Bloomberg found that patients could easily be re-identified from the database info by combining it with local news reports and other publicly available information.

Several states have initiated privacy audits since the Bloomberg research came out in June, while others already had audits under way.

To learn more:
- here's the executive summary (.pdf)
- read the report (.pdf)
- check out the OneNewsNow article

Suggested Articles

An assessment looking at 12 health systems that allow patients to download their health records to their smartphones via APIs finds modest uptake.

The National Institutes of Health-led All of Us precision medicine project has enrolled 230,000 participants with another 40,000 people registered.

Hospitals must pursue a deliberate strategy for managing their public image—and a powerful tool for doing so is inpatient clinical data registries.