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.

Re: HIPAA Auditor Involved in Own Data Breach

OCR’s contractor, KPMG, breached the privacy of 4,500 patient records when an employee lost an unencrypted flash drive.

You can read the full story at Health Leaders Media, “HIPAA Auditor Involved in Own Data Breach.”

KPMG absolved itself of doing any harm:

  • “KPMG believes that it is possible that the patient data was deleted from the flash drive prior to the time when it was lost,”
  • “KPMG has also concluded that there is no reason to believe that the information on the flash drive was actually accessed by any unauthorized person.”

Then KPMG prescribed its own remedy:

  • “KPMG has told us the company is implementing measures to avoid similar incidents in the future, including additional training and the use of improved encryption for its flash drives.”

Why didn’t OCR investigate and penalize KPMG? Instead, OCR doubled down and awarded KPMG a $9.2 million contract for HITECH-required HIPAA audits.

This does little to inspire consumer confidence in OCR, which has a long history of not penalizing industry for data security breaches.

Time for Congressional oversight?

HHS quietly withdraws HIPAA breach-notification rule

Following a firestorm of criticism from privacy advocates who say federal officials gave too much leeway to healthcare organizations that inadvertently disclose protected health information, HHS has without fanfare withdrawn its HIPAA “breach notification” final rule that had been submitted to the White House for budgetary approval.

The move was “to allow for further consideration, given the department’s experience to date in administering the regulations,” the HHS Office for Civil Rights posted on its website late Wednesday. “This is a complex issue and the administration is committed to ensuring that individuals’ health information is secured to the extent possible to avoid unauthorized uses and disclosures, and that individuals are appropriately notified when incidents do occur,” OCR explained…

…The decision thrilled the Patient Privacy Rights Foundation, headed by noted privacy watchdog Dr. Deborah Peel, which had been adamantly opposed to the so-called “harm standard.”

See the PPR Press Release supporting this decision.