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.”"

Dangers of Consumer Internet Services in Health Care

Although Internet services like Gmail, Yahoo! Mail, Hotmail and Google Calendar are familiar to patients and doctors, use of such services in health care environments creates a serious privacy risk. The U.S. Department of Health & Human Services took action earlier this year when it discovered that Phoenix Cardiac Surgery, a five-physician clinic in Arizona, was posting patient appointments on the web using Google Calendar. As a result, the appointments could be found by anyone searching the Internet. Make sure your doctors and health care providers are not using consumer Internet services such as the ones identified above to store protected health information.

Health care providers should only use cloud services that are designed to comply with HIPAA and offer a HIPAA Business Associate Agreement.

You can contact PPR if you have questions or concerns about the use of consumer Internet services by health care providers and the security of your health information.

Re: Federal Agencies Paint Regulatory Landscape with Broad Brushstrokes

The Genomics Law Report (GLR) posted an interesting blog about the emergence of mobile health (mHealth) and the role many believe it could play in improving the quality and delivery of health care. It discusses how the mHealth regulatory landscape is still in its early stages of formation and has many key players and components that will help guide its development. It then outlines many of the players, such as the FDA, FCC, FTC, and HHS, and the various ways in which each organization might help shape the future of mHealth.

The story also makes mention of the FTC’s “privacy by design” recommendation for mobile applications, which is undoubtedly a critical component to protecting patients’ privacy as more innovative technologies and apps hit the marketplace. However, aside from ensuring that strong privacy controls are built into the apps up front, it will also be important to make sure patients have other important privacy protections, like control over their sensitive health information, no matter the medium used to collect and share it.

To read the full blog from GLR, click here.

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.

Re: Heart Gadgets Test Privacy-Law Limits

In response to The Wall Street Journal article “Heart Gadgets Test Privacy-Law Limits

This story shows the ethical and legal absurdity of private corporations’ claims to own and control patient records. Greedy corporations are copying their business models from Google and Facebook: sell every piece of information about every individual to any willing buyer.

Despite patients’ strong rights to obtain copies of their entire medical records, including data from devices that monitor health status, most hospitals and electronic health systems don’t yet offer patients a way to download personal health information, which is required by HIPAA and HITECH.

EVEN MORE IMPORTANTLY patients also have very strong ethical, legal, and Constitutional rights to control the disclosure and use of personal health information.

Today’s health IT systems and data exchanges were designed to prevent patient control over personal health information. Most health IT systems have abysmal data security (millions of health data breaches and thefts) and no means for patients to control who can see, use or sell their health data.

Government and Congress have poured $29 billion in stimulus funds into defective technology systems that violate the public’s rights to privacy and control over health information in electronic systems.

Medtronic and hospitals are hiding behind illegal contracts that violate patients’ rights to access and control sensitive personal health information.

We need clear new laws to ban the sale of personal health information without informed consent and RESTORE patient control over use, disclosure, and sale of health information.

-Deborah Peel

Patients want granular privacy control over health information in electronic medical records

View the full article written by  Kelly Caine and Rima Hanania at Patients want granular privacy control over health information in electronic medical records.

When will consent for the use of personal health data become a critical research topic?

Why won’t NIH, AHRQ, or HHS make research on consent and control over personal health information a priority?

Why is the government and academia ignoring this topic?

Results of AHRQ’s 20 focus groups across the US in 2009 showed:

  • ·A majority of the public wants to “own” their health data, and to decide what goes into and who has access to their medical records.
  • ·There was near universal agreement in all focus groups that if medical data are stored electronically, health care consumers should have some say in how those data are shared and used.
  • ·A majority believes their medical data is “no one else’s business” and should not be shared without their permission. This belief was expressed not necessarily because they want to prevent some specific use of data but as a matter of principle.
  • ·Participants overwhelmingly want to be able to communicate directly with their providers with respect to how their PHI is handled, including with whom it may be shared and for what purposes. Most believe they should automatically be granted the right to correct misinformation.

From: AHRQ Publication No. 09-0081-EF. Final Report: Consumer Engagement in Developing Electronic Health Information Systems. Prepared by Westat; July 2009. Available at: http://healthit.ahrq.gov/portal/server.pt/gateway/PTARGS_0_1248_888520_0_0_18/09-0081-EF.pdf.

Surely consent is worthy of study.

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.