States Review Rules After Patients Identified via Health Records

To view the full article, please visit States Review Rules After Patients Identified via Health Records.

Key Quotes from the Article:

  • -”Some U.S. states are reviewing their policies around the collection and sale of health information to ensure that some patients can’t be identified in publicly available databases of hospital records.”
  • -Bloomberg News, working with Harvard University professor Latanya Sweeney, reported on June 4 that some patients of Washington hospitals could be identified by name and have their conditions and procedures exposed when a database sold by the state for $50 is combined with news articles and other public information.
  • -The state probes are focused on whether privacy standards for health information should be tightened as data-mining technologies get more sophisticated and U.S. President Barack Obama’s health-care overhaul drives rapid growth in the amount of patient data being generated and shared.
  • -Sweeney’s goal of identifying patients is to show that threats to privacy exist in datasets that are widely distributed and fall outside HIPAA’s regulations.

Prince William’s DNA

As more individuals start posting their genomes or other genetic information online, privacy issues grow. A recent article from GenomeWeb about Prince William’s DNA highlights one of PPR’s concerns about publicly sharing such information: one person’s choice to research and reveal information about themselves reveals information about so many others who had no say in that decision.

To be clear, PPR is not opposed to genetic testing and actually believes there are many new and exciting possibilities that exist within the realm of genetic analysis. However, there are several issues that need to be addressed before people start encouraging others to publicly share their own genetic information. This excerpt from the article sums up the dilemma quite nicely:

“What is noteworthy is the ethics of publishing details of this genetic analysis at all,” Brice says, noting that “one of the major ethical concerns about genetic information and privacy” is that individual information can lead to the disclosures about family members.

The Duke’s cousins are free to have genetic tests if they want, but disclosing information about other, non-consenting individuals, is “highly questionable,” Brice says.

To read the full article, click here. (Note: Free subscription may be required).

Sizing Up De-Identification Guidance, Experts Analyze HIPAA Compliance Report (quotes PPR)

To view the full article by Marianne Kolbasuk McGee, please visit: Sizing Up De-Identification Guidance, Experts Analyze HIPAA Compliance Report.

The federal Office of Civil Rights (OCR), charged with protecting the privacy of nation’s health data, released a ‘guidance’ for “de-identifying” health data. Government agencies and corporations want to “de-identify”, release and sell health data for many uses. There are no penalties for not following the ‘guidance’.

Releasing large data bases with “de-identified” health data on thousands or millions of people could enable break-through research to improve health, lower costs, and improve quality of care—-IF “de-identification” actually protected our privacy, so no one knows it’s our personal data—-but it doesn’t.

The ‘guidance’ allows easy ‘re-identification’ of health data. Publically available data bases of other personal information can be quickly compared electronically with ‘de-identified’ health data bases, so can be names re-attached, creating valuable, identifiable health data sets.

The “de-identification” methods OCR proposed are:

  • -The HIPAA “Safe-Harbor” method:  if 18 specific identifiers are removed (such as name, address, age, etc, etc), data can be released without patient consent. But .04% of the data can still be ‘re-identified’
  • -Certification by a statistical  “expert” that the re-identification risk is “small” allows release of data bases without patient consent.

o   There are no requirements to be an “expert”

o   There is no definition of “small risk”

Inadequate “de-identification” of health data makes it a big target for re-identification. Health data is so valuable because it can be used for job and credit discrimination and for targeted product marketing of drugs and expensive treatment. The collection and sale of intimately detailed profiles of every person in the US is a major model for online businesses.

The OCR guidance ignores computer science, which has demonstrated ‘de-identification’ methods can’t prevent re-identification. No single method or approach can work because more and more ‘personally identifiable information’ is becoming publically available, making it easier and easier to re-identify health data.  See: the “Myths and Fallacies of “Personally Identifiable Information” by Narayanan and Shmatikov,  June 2010 at: http://www.cs.utexas.edu/~shmat/shmat_cacm10.pdf Key quotes from the article:

  • -“Powerful re-identification algorithms demonstrate not just a flaw in a specific anonymization technique(s), but the fundamental inadequacy of the entire privacy protection paradigm based on “de-identifying” the data.”
  • -“Any information that distinguishes one person from another can be used for re-identifying data.”
  • -“Privacy protection has to be built and reasoned about on a case-by-case basis.”

OCR should have recommended what Shmatikov and Narayanan proposed:  case-by-case ‘adversarial testing’ by comparing a “de-identified” health data base to multiple publically available data bases to determine which data fields must be removed to prevent re-identification. See PPR’s paper on “adversarial testing” at: http://patientprivacyrights.org/wp-content/uploads/2010/10/ABlumberg-anonymization-memo.pdf

Simplest, cheapest, and best of all would be to use the stimulus billions to build electronic systems so patients can electronically consent to data use for research and other uses they approve of.  Complex, expensive contracts and difficult ‘work-arounds’ (like ‘adversarial testing’) are needed to protect patient privacy because institutions, not patients, control who can use health data. This is not what the public expects and prevents us from exercising our individual rights to decide who can see and use personal health information.