Re: The Internet is a surveillance state

In response to the CNN article by Bruce Schneier: The Internet is a surveillance state

Bruce Schneier is wrong. Privacy is not over — the public is just now learning how invasive Internet technology, tech corporations, and government really are, and that they ACT to protect and maintain the US surveillance economy. When enough citizens tell Congress and the President to stop, this privacy disaster will stop.

The public is just beginning to WAKE UP. Today is the start of privacy in the Digital Age in the US, not the end.

It’s a lie that people happily give up privacy for “targeted ads” — tech giants like Google, Facebook, etc. have PREVENTED us from having apps and tools that enable privacy (ie, our right TO control personal information online). We have NO choices because government and the data mining industry have prevented us from having meaningful choices.

Signs of intelligent life in the Universe:

  • Attend or watch the 3rd International Summit on the Future of Health Privacy (its free). The EU Data Protection Supervisor will keynote and so will the US Chief Technology Officer—-the stark differences between US and EU data protections will be discussed—register at: http://www.healthprivacysummit.org/d/vcq3vz/4W
  • SnapChat—millions of free downloads of an app that shows people want technology that gives THEM control over their data: single use of info (a picture in this case) and the ability to delete info. See: http://patientprivacyrights.org/2013/02/snapchat-and-the-erasable-future-of-social-media/
  • A recent Pew Research Center study found smartphone users are taking action to protect their privacy:
  • The default for Microsoft’s Windows 8 browser is ‘Do Not Track’
    • Microsoft’s Chief Privacy Officer Brendon Lynch said a recent company study of computer users in the United States and Europe concluded that 75 percent wanted Microsoft to turn on the Do Not Track mechanism. “Consumers want and expect strong privacy protection to be built into Microsoft products and services.”
    • See more in the New York Times article: Do Not Track? Advertisers Say ‘Don’t Tread on Us’

DONATE to help Latanya Sweeney and Patient Privacy Rights build a health data map—-we MUST prove that thousands of hidden data users are stealing, using , and selling our personal health data: http://patientprivacyrights.org/donate/

SEE Latanya describe thedataMap at: http://patientprivacyrights.org/thedatamap/
This is the beginning of privacy, the war has just begun.

Re: PNAS study on predicting human behavior using digital records

Picture a box with 2,000 or 10,000 puzzle pieces inside—any one puzzle piece reveals nothing about the picture. But when all the pieces are assembled, an incredibly detailed picture FULL of information is created.

The data mining industry—including Google, Facebook, Acxiom and thousands more unknown corporations and foreign businesses—assembles the puzzle of who we are from thousands of bits of data we leave online. They know FAR MORE than anyone on Earth knows about each of us—more than what our partners, our moms and dads, our best friends, our psychoanalysts, or our children know about us.

The UK study shows how easy it is for hidden data mining companies to intimately know us (and sell) WHO WE ARE.

Most Americans are not aware of the ‘surveillance economy’ or that data miners can easily collect intimate psychological and physical/health profiles of everyone from online data.

The study:

  • “demonstrates the degree to which relatively basic digital records of human behavior can be used to automatically and accurately estimate a wide range of personal attributes that people would typically assume to be private”
  • “is based on Facebook Likes, a mechanism used by Facebook users to express their positive association with (or “Like”) online content, such as photos, friends’ status updates, Facebook pages of products, sports, musicians, books, restaurants, or popular Web sites”
  • correctly discriminates between:
    • homosexual and heterosexual men in 88% of cases
    • African Americans and Caucasian Americans in 95% of cases
    • between Democrat and Republican in 85% of cases
    • For the personality trait “Openness,” prediction accuracy is close to the test–retest accuracy of a standard personality test

The “surveillance economy” is why the US needs FAR STRONGER LAWS at the very least to prevent the hidden collection, use, and sale of health data, including everything about our minds and bodies, unless we give meaningful informed consent.

This urgent topic, ie whether the US should adopt strong data privacy and security protections like the EU—will be debated at the 3rd International Summit on the Future of Health Privacy June 5-6 in DC (it’s free to attend and will also be live-streamed). Register at: www.healthprivacysummit.org

Putting Health IT on the Path to Success

“The promise of health information technology (HIT) is comprehensive electronic patient records when and where needed, leading to improved quality of care at reduced cost. However, physician experience and other available evidence suggest that this promise is largely unfulfilled.

Comprehensive records require more than having every physician and hospital use an electronic health record (EHR) system. There must also be an effective, efficient, and trustworthy mechanism for health information exchange (HIE) to aggregate each patient’s scattered records into a complete whole when needed. This mechanism must also be accurate and reliable, protect patient privacy, and ensure that medical record access is transparent and accountable to patients.”

*Subscription needed to see full article.

UPMC, Oracle to help with ID management

To view the article, please visit UPMC, Oracle to help with ID management.

UPMC revealed plans on Thursday to collaborate with Oracle in the development of cloud-based identity management technology to be utilized by small to mid-sized healthcare providers.

According to the article, “CloudConnect Health IT will enable healthcare users to easily manage computer accounts, including adding, modifying and terminating a user’s computer access, officials say. They’ll also help providers manage access based on the user’s job responsibility and provide self-service tools for retrieving forgotten passwords and unlocking accounts, as well as offer comprehensive management reporting.”

This poses a problem because, as Adrian Gropper, MD, points out “Proprietary identity systems risk being coercive of the patient to the extent that they allow aggregation of a patient’s records across multiple institutions without informed patient consent. Voluntary ID systems can be created that are not coercive while still offering the value of global uniqueness.”

Should the U.S. Adopt European-Style Data-Privacy Protections?

View the full article at Should the U.S. Adopt European-Style Data-Privacy Protections?

This urgent issue will be debated at the 3rd International Summit on the Future of Health Privacy in Washington, DC on June 5-6, 2013 at Georgetown Law Center.

The opening keynote will be Peter Hustinx, the EU Data Protection Supervisor. He will speak on “A health check on data privacy?”

Register to attend at www.healthprivacysummit.org . Later we will post a link to watch via live-streaming video.

theDataMap™

theDataMap™ is an online portal for documenting flows of personal data. The goal is to produce a detailed description of personal data flows in the United States.

A comprehensive data map will encourage new uses of personal data, help innovators find new data sources, and educate the public and inform policy makers on data sharing practices so society can act responsibly to reap benefits from sharing while addressing risks for harm. To accomplish this goal, the portal engages members of the public in a game-like environment to report and vet reports of personal data sharing. More…

Members of the public sign-up to be Data Detectives and then work with other Data Detectives to report and vet data sharing arrangements found on the Internet. Data Detectives are responsible for content on theDataMap™.

See the debut of theDataMap™ from the “Celebration of Privacy” during the 2nd International Summit on the Future of Health Privacy here:

Data Protection Laws, an Ocean Apart

American citizens are like just like EU citizens: they want the same strong rights to control personal information online, especially health information.

See the letter Patient Privacy Rights and other NGOs signed supporting the EU’s tough requirements for data protection.  The letter urges the US government policy makers to support the same tough data protections for US citizens, also embodied in the protections President Obama laid out in the “Consumer Privacy Bill of Rights”.

Unfortunately, the “Consumer Privacy Bill of Rights” exempts all health data, leaving the flawed HIPAA Privacy Rule that eliminates our control over personal health data in effect. The 563 page Omnibus Privacy Rules adds strong data security protections and stronger enforcement of violations for some health data holders and users, but not all. But it does not restore patients’ rights to consent before personal health information is accessed or used, even though the right to control health information has been the law of land for centuries and is the key ethic in the Hippocratic Oath (requires doctors to keep information private and not share it without consent).

US citizens will not trust their physicians or electronic health systems unless they control who can see and use their records, from diagnoses to DNA to prescriptions.

Article: Big brother to log your drinking habits and waist size as GPs are forced to hand over confidential records

To view the full article written by Jack Doyle, please visit: Big brother to log your drinking habits and waist size as GPs are forced to hand over confidential records

The UK government proposes to collect citizens’ health data in a “giant information bank”.  “A document outlining the scheme even raises the prospect of clinical data being passed on or sold to third parties”.

Quotes:

  • -Doctors will be forced to hand over sensitive information about patients as part of a new programme called Everyone Counts.
  • -The files will be stored in a giant information bank that privacy campaigners say represents the  ‘biggest data grab in NHS history’.
  • -Ross Anderson, professor of security engineering at Cambridge University, said: ‘Under these proposals, medical confidentiality is, in effect, dead and there is currently nobody standing in the way.’

David Cameron was criticized in the Guardian in 2011 when he first announced similar plans for collecting all citizens health data to:

  • -“encourage NHS ties with industry and fuel innovation, including £180m catalyst fund”
  • -encourage “collaboration between the health service and the life sciences industry”
  • -“make it easier for drug companies to run clinical trials in hospitals and to benefit from the NHS’s vast collection of patient data”.

The tens or hundreds of billions generated annually by sales of American citizens’ electronic health information are an attractive model for the UK and EU given the dire economic situation in the EU. It’s hard to know how large the market for health data is or how health data is used without a data map. See Professor Sweeney explain theDataMap research project at: http://tiny.cc/etyxrw

Americans can’t control who sees or uses their health data. Will UK citizens suffer the same fate?

Rekindling the patient ID debate

Unique patient identifiers pose enormous implications for patient control and privacy. Dr. Deborah Peel is quoted in this article explaining how detrimental UPIs will be for patient trust and safety. To view the full article, please visit Rekindling the patient ID debate.

Key Quotations:

“The idea of unique patient identifiers (UPIs) is not a concept extracted from the next dystopian novel. It could very well be reality in the not-so-distant future. The question remaining, however, is whether or not the benefits of such technology outweigh constitutional privacy and patient trust concerns.”

“Deborah Peel, MD, founder of Patient Privacy Rights, and a fierce opponent of UPIs, writes in a Jan. 23 Wall Street Journalarticle, ‘In the end, cutting out the patient will mean the erosion of patient trust. And the less we trust the system, the more patients will put health and life at risk to protect their privacy.’

Peel points to the present reality of patient health information – genetic tests, claims data and prescription records – already being sold and commercialized. ‘Universal healthcare IDs would only exacerbate such practices,’ she avers.”

Questions of Privacy

ModernHealthcare.com recently posted a great article about PPR’s Dr. Deborah Peel and her work.

A few key points from the article:

“In 2002, HHS redrafted the privacy rule of the Health Insurance Portability and Accountability Act, replacing its patient consent requirement for the sharing of most patient records with a new provision. The rewrite afforded ‘regulatory permission,’ according to the rule, for hospitals, physicians, insurance companies, pharmacies, claims clearinghouses and other HIPAA-covered entities to use and disclose patient data for treatment, payment and a long list of other healthcare operations without patient consent.”

“’Let’s face it,’ Peel says, ‘HHS is the agency that eliminated patient control over electronic medical records and has remained hostile to patients’ rights ever since.’”

“‘Where I’m coming from is, I’ve spent all this time in a profession with people being hurt,’ Peel says. ‘Starting in the 1970s, when I first let out my shingle, people came to me and said, if I paid you in cash, would you keep my records private. Now, we’ve got a situation where you don’t even know where all your records are. We don’t have a chain of custody for our data, or have a data map’ to track its location.”