OCR Could Include Cloud Provision in Forthcoming Omnibus HIPAA Rule

The below excerpt is from the Bloomberg BNA article OCR Could Include Provision in Forthcoming Omnibus HIPAA Rule written by Alex Ruoff. The article is available by subscription only.

“The final omnibus rule to update Health Insurance Portability and Accountability Act regulations, expected to come out sometime early this year, could provide guidance for health care providers utilizing cloud computing technology to manage their electronic health record systems, the chief privacy officer for the Office of the National Coordinator for Health Information Technology said Jan. 7 during a panel discussion on cloud computing.

The omnibus rule is expected to address the health information security and privacy requirements for business associates of covered entities, provisions that could affect how the HIPAA Privacy Rule affects service providers that contract with health care entities, Joy Pritts, chief privacy officer for ONC, said during the panel, hosted by the consumer advocacy group, Patient Privacy Rights (PPR).

PPR Dec. 19 sent a letter to Health and Human Services’ Office for Civil Rights Director Leon Rodriguez, asking the agency to issue guidance on cloud computing security. PPR leaders say they have not received a response…

…Deborah Peel, founder of Patient Privacy Rights, said few providers understand how HIPAA rules apply to cloud computing. This is a growing concern among consumer groups, she said, as small health practices are turning to cloud computing to manage their electronic health information.”

Vast cache of Kaiser patient details was kept in private home

The excerpt below is from the LA Times article Vast cashe of Kaiser patient details was kept in private home by Chad Terhune. This shows both the negligence of Kaiser in caring for their patients, but also the lack of privacy and security that is frequently found in electronic health records.

“Federal and state officials are investigating whether healthcare giant Kaiser Permanente violated patient privacy in its work with an Indio couple who stored nearly 300,000 confidential hospital records for the company.

The California Department of Public Health has already determined that Kaiser “failed to safeguard all patients’ medical records” at one Southern California hospital by giving files to Stephan and Liza Dean for about seven months without a contract. The couple’s document storage firm kept those patient records at a warehouse in Indio that they shared with another man’s party rental business and his Ford Mustang until 2010.

Until this week, the Deans also had emails from Kaiser and other files listing thousands of patients’ names, Social Security numbers, dates of birth and treatment information stored on their home computers.

The state agency said it was awaiting more information from Kaiser on its “plan of correction” before considering any penalties.

Officials at the U.S. Department of Health and Human Services began looking into Kaiser’s conduct last year after receiving a complaint from the Deans about the healthcare provider’s handling of patient data, letters from the agency show. Kaiser said it hadn’t been contacted by federal regulators, and a Health and Human Services spokesman declined to comment.”

Re: Open data is not a panacea

Regarding the story on MathBabe.org titled Open data is not a panacea

This story is a much-needed tonic to the heavy industry and government spin promoting ONLY the benefits of “open data” without mentioning the harms.

Quotes from the story:

  • When important data goes public, the edge goes to the most sophisticated data engineer, not the general public. The Goldman Sachs’s of the world will always know how to make use of “freely available to everyone” data before the average guy.
  • If there’s one thing I learned working in finance, it’s not to be naive about how information will be used. You’ve got to learn to think like an asshole to really see what to worry about.
  • So, if you’re giving me information on where public schools need help, I’m going to imagine using that information to cut off credit for people who live nearby. If you tell me where environmental complaints are being served, I’m going to draw a map and see where they aren’t being served so I can take my questionable business practices there.

Patient Privacy Rights’ goal is a major overhaul of U.S. health technology systems, so your health data is NOT OPEN DATA. Your health data should only be “open” and used with your knowledge and informed consent for purposes you agree with, like treatment and research. It will take a major overhaul for the public to trust health IT systems.

Why does Patient Privacy Rights advocate for personal control over health information and against “open data”? Answer:

For reasons that are NOT apparent, the healthcare industry shuns learning from computer scientists, mathematicians, and privacy experts about the harms and risks posed by today’s poorly designed “open” healthcare technology systems, the Internet, and the “surveillance economy”.

The health care industry and government shun facts like:

YOU can help build a data map so industry and government are forced to stop pretending that the health information of every person in the US is safe, secure, and private. Donate at: http://patientprivacyrights.org/donate/

Patient privacy group (PPR) asks HHS for HIPAA cloud guidance

Government HealthIT recently wrote an article about Dr. Peel’s of Patient Privacy Rights’ letter to the HHS Office for Civil Rights pushing for security guidelines, standards, and enforcements for cloud technology being used in healthcare.

Here are a few key points highlighted in the article:

“Issuing guidance to strengthen and clarify cloud-based protections for data security and privacy will help assure patients (that) sensitive health data they share with their physicians and other health care professionals will be protected,” Peel said.

“Cloud-computing is proving to be valuable, Peel said, but the nation’s transition to electronic health records will be slowed ‘if patients do not have assurances that their personal medical information will always have comprehensive and meaningful security and privacy protections.’”

“Patient Privacy Rights, a group founded in 2006, is encouraging HHS to adopt guidelines that highlight ‘the lessons learned from the Phoenix Cardiac Surgery case while making it clear that HIPAA does not prevent providers from moving to the cloud as long as it is done responsibly and in compliance with the law.'”

“In general, Peel said, cloud providers and the healthcare industry at large could benefit from guidance and education on the application of federal privacy and security rules in the cloud. ‘HHS and HIPAA guidance in this area, to date, is limited,’ Peel said, recommending the National Institute of Standards and Technology’s cloud privacy guidelines as a baseline.”

Health-care sector vulnerable to hackers, researchers say

From the Wall Street Journal article by Robert O’Harrow Jr. titled Health-care sector vulnerable to hackers, researchers say

“As the health-care industry rushed onto the Internet in search of efficiencies and improved care in recent years, it has exposed a wide array of vulnerable hospital computers and medical devices to hacking, according to documents and interviews.

Security researchers warn that intruders could exploit known gaps to steal patients’ records for use in identity theft schemes and even launch disruptive attacks that could shut down critical hospital systems.

A year-long examination of cybersecurity by The Washington Post has found that health care is among the most vulnerable industries in the country, in part because it lags behind in addressing known problems.

“I have never seen an industry with more gaping security holes,” said Avi Rubin, a computer scientist and technical director of the Information Security Institute at Johns Hopkins University. “If our financial industry regarded security the way the health-care sector does, I would stuff my cash in a mattress under my bed.””

Kravis Backs N.Y. Startups Using Apps to Cut Health Costs

The title should have been: “Wall Street trumps the Hippocratic Oath and NY patients’ privacy” or “NY gives technology start-ups free access to millions of New Yorkers sensitive health data without informed consent starting in February”.

Of course we need apps to lower health costs, coordinate care, and help people get well, but apps should be developed using ‘synthetic’ data, not real patient data. Giving away valuable identifiable patient data to app developers is very risky and violates patients legal and ethical rights to health information privacy under state and federal law—each of us has strong rights to decide who can see and use personal health information.

What happens when app developers use, disclose or sell Mayor Bloomberg’s, Governor Cuomo’s, Sec of State Hillary Clinton’s, or Peter Thiel’s electronic health records? Or will access to prominent people’s health records be blocked by the data exchange, while everyone’s else’s future jobs and credit are put at risk by developer access to health data?  Will Bloomberg publish a story about the consequences of this decision by whoever runs the NY health data exchange? Will Bloomberg write about the value, sale, and massive technology-enabled exploitation of health data for discrimination and targeted marketing of drugs, treatments, or for extortion of political or business enemies? Natasha Singer of the NYTimes calls this the ‘surveillance economy’.

The story did not mention ways to develop apps that protect patients’ sensitive information from disclosure to people not directly involved in patient care. The story could have said that the military uses “synthetic” patient data for technology research and app development. They realize that NOT protecting the security and privacy of sensitive data of members of the military and their families creates major national security risks.  The military builds and tests technology and apps on synthetic data; researchers or app developers don’t get access to real, live patient data without tough security clearances and high-level review of those who are granted permission to access data for approved projects that benefit patients. Open access to military health data bases threatens national security. Will open access to New Yorkers’ health data also threaten national security?

NY just started a national and international gold rush to develop blockbuster health apps AND will set off a rush by other states to give away or sell identifiable patient health information in health information exchanges (HIEs) or health information organizations (HIOs)—-by allowing technology developers access to an incredibly large, valuable data base of identifiable patient health information.  Do the developers get the data free—or is NY selling health data? The bipartisan Coalition for Patient Privacy (represents 10.3M people) worked to get a ban on the sale of patient health data into the stimulus bill because the hidden sale of health data is a major industry that enables hidden discrimination in key life opportunities like jobs and credit. Selling patient data for all sorts of uses is a very lucrative industry.

Further, NY patients are being grossly misled: they think they gave consent ONLY for their health data to be exchanged so other health professionals can treat them. Are they informed that dozens of app developers will be able to copy all their personal health data to build technology products they may not want or be interested in starting in February?

Worst of all the consequences of systems that eliminate privacy is: patients to act in ways that risk their health and lives when they know their health information is not private:

  • -600K/year avoid early treatment and diagnosis for cancer because they know their records will not be private
  • -2M/year avoid early treatment and diagnosis for depression for the same reasons
  • -millions/year avoid early treatment and diagnosis of STDs, for the same reason
  • -1/8 hide data, omit or lie to try to keep sensitive information private

More questions:

  • -What proof is there that the app developers comply with the contracts they sign?
  • -Are they audited to prove the identifiable patient data is truly secure and not sold or disclosed to third parties?
  • -What happens when an app developer suffers a privacy breach—most health data today is not secure or encrypted? If the app developers signed Business Associate Agreements at least they would have to report the data breaches.
  • -What happens when many of the app developers can’t sell their products or the businesses go bust? They will sell the patient data they used to develop the apps for cash.
  • -The developers reportedly signed data use agreements “covering federal privacy rules”, which probably means they are required to comply with HIPAA.  But HIPAA allows data holders to disclose and sell patient data to third parties, promoting further hidden uses of personal data that patients will never know about, much less be able to agree to.  Using contracts that do not require external auditing to protect sensitive information and not requiring proof that the developers can be trusted is a bad business practice.

NY has opened Pandora’s box and not even involved the public in an informed debate.

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.

When a Palm Reader Knows More Than Your Life Line

See the full article at When a Palm Reader Knows More than Your Life Line.

Great story by Natasha Singer!  Langone Medical Center in NY is trying to quickly solve a problem, but it’s NOT the problem of identity theft or medical ID theft (where someone impersonates you to use your health insurance to obtain treatment).   As pointed out in the story, biometrics don’t protect against medical identity theft, because anyone can impersonate you using a fake ID and submit their palm prints and photo to Langone.

The problem Langone solved is how to reliably link every patient’s health records together, so the hospital staff can easily find them.  Instead, patients should control and link their records, and selectively share the relevant parts with physicians and staff on a ‘need-to-know’ basis.

The Langone health technology system (like the majority of US hospitals) prevents patient control of access to sensitive personal health information.  Instead it enables all physicians, nurses, and even admissions clerks to use palm prints and photos to pull up all your records, including sensitive data about sexual problems, marital therapy, STDs, addiction, etc.  Joseph Atick correctly pointed out that Langone could instead use biometrics to put patients in control of personal records by allowing access ONLY when the patient is present and scans his/her palm.

Langone uses biometrics the same way social security numbers are used: to collect and link together all financial and personal information about individuals.  We desperately need entirely different, trustworthy health IT systems that ensure individuals control their digital health identities and sensitive health data, not institutions.

Electronic health systems could work much like the way we control our finances online: we decide who gets paid, when, and how much, not banks or merchants. We can set up automatic payments and/or decide about transferring money on a case-by-case basis.

The US could have a trustworthy patient-controlled health IT system in 5 years. It will require:

  • -building patient and physician portals (so we can connect with doctors and health professionals)
  • -robust patient-controlled identity systems
  • -the ability to download copies of personal health data into health record banks that do not sell or transfer our data without informed consent
  • -strong new laws to restore our strong, longstanding rights to control health information in electronic systems

HIPAA and current technology empower government and institutions to control the nation’s health records. It’s high time to fix that.

How Medical Identity Theft Can Give You a Decade of Headaches

See the full article at How Medical Identity Theft Can Give You a Decade of Headaches.

This article tells us a cautionary tale about how Arnold Salinas had his identity stolen by someone who took out medical care in his name. Now, any time he gets medical treatment, he has to be extremely careful that his records are actually his own or face the possibility that he will get the WRONG treatment.

“Medical identity theft affected an estimated 1.5 million people in the U.S. at a cost of $41.3 billion last year, according to the Ponemon Institute, a research center focused on privacy and data security. The crime has grown as health care costs have swelled and job cuts have left people without employer-subsidized insurance. Making matters worse: The complexity of the medical system has made it difficult for victims to clear their name.”

It is so important that patients control and are kept abreast of their medical records, but the current system does not make this easy. According to the article, medical identity theft cases are some of the most difficult to solve and can take years. What makes it so difficult is that “‘…you have to go provider by provider, hospital by hospital, office by office and correct each record,” said Sam Imandoust, a legal analyst with the Identity Theft Resource Center. ‘The frustrating part is while you’re going through and trying to clean up the records, the identity thief can continue to go around and get medical services in the victim’s name. Really there’s no way to effectively shut it down.’” Another problem is even finding out your identity has been stolen. According to Pam Dixon, founder of World Privacy Forum, “the fractured nature of the health care system makes medical identity theft hard to detect. Victims often don’t find out until two years after the crime, and cases can commonly stretch out a decade or longer”. Banks and other institutions are used to dealing with identity theft, but the medical industry isn’t equipped to handle this kind of infringement.

HIT systems among top 10 health tech hazards, says ECRI

Another story about why health technology is not ready for prime time. Today untested, unsafe health technologies and applications that eliminate patient control over sensitive personal health information are mandated for use by physicians and hospitals.

Today patient health data is widely disclosed and sold through electronic systems See ABC Story about the sale of diabetic patient records for $14-$25 per patient). It will be years until patients can control sensitive information (from prescriptions to DNA to diagnoses) because systems were never designed to comply with patients’ rights to control health records. There is no data map to know where our personal health data is held or what it’s being for (see Prof Sweeney explain the need for a health data map on video).

In addition, health technology also poses serious risks to patient including:

  • -patient/data mismatches between systems (which would not happen if patients controlled the use and disclosure of their information)
  • -interoperability failures with medical devices and health IT systems
  • -Caregiver distractions from smartphones and other mobile devices