Health data breaches usually aren’t accidents anymore

While the healthcare industry has made advancements in how they protect our most personal information, those trying to steal our electronic health records have become even more savvy as to how to access them.

Key Quotes from the Article:

“One of the biggest changes during the past decade is the data being targeted. Ten years ago, it was personal identifiable information. Now, said Rick Kam, president and co-founder of ID Experts in Portland, Ore., personal health information is being targeted, mainly because of the value it holds and the relative ease thieves have getting their hands on it.”

“94% of health care organizations have had at least one breach in the previous two years.Because data can now reside in multiple locations, including unsecured smartphones, laptops and tablets, and can be transported to an infinite number of locations, thieves, whether they be outside hackers, device stealers or people who try to use staff to share sensitive information, have more areas to target.”

Sign the Petition for Patient-Controlled Exchange of Health Information

Sign the petition asking Congress to put you in control of exchanging your sensitive health data via Health Data Exchanges (HIEs)!

Sign the petition here.

By the end of the year, every state must have one or more Health Information Exchange (HIEs) so your health data can be transferred to other doctors, the state, the federal government, insurers, technology companies, researchers, commercial users, and many other institutions.

Today those institutions and organizations decide when and to whom to transfer your health data—not you.

KEY PRINCIPLES FOR DATA EXCHANGE USING HIEs:

• You should control whether or not your health information is exchanged.

• You should have full access to electronic copies of all your health information.

• You should know what information the HIE exchanges, stores or collects, with whom your data is shared, and the purpose for using it.

View and sign the petition asking Congress to strengthen the law so Americans can trust electronic health systems and data exchanges.

Re: Poor Prognosis for Privacy

In response to The Wall Street Journal article by Melinda Beck: Poor Prognosis for Privacy

Most healthcare institutions and John Halamka ignore the fact that for over a decade technology has empowered millions of patients to control which parts of their electronic health records are disclosed for mental health and addiction treatment. The technology for ‘segmentation’ exists.

Congress, the courts, state and federal laws, and medical ethics require that patients control who can see and use sensitive personal health data, yet federal regulators who write the rules for industry have not required electronic health systems to use either ‘segmentation’ or other technologies like meta-data tagging that could also enable selective disclosures of health information.

When the public finds out they can’t control the use or disclosure of sensitive personal health data, many millions will refuse early diagnosis and treatment for cancer, depression, and STDs every year—and millions more will hide information, refuse tests, and act in ways that put their health at risk. These are bad outcomes.

Should the public be forced to use health technology systems that cause bad outcomes? Why not require technology that IMPROVES health outcomes?

An American Quilt of Privacy Laws, Incomplete

The MOST “incomplete” US privacy law is HIPAA, which eliminated Americans’ rights to control the collection, use, disclosure and sale of their health data in 2001.

The new Omnibus Privacy Rule did not fix this disaster. It made things worse by explicitly permitting health data sales for virtually any purpose without patients’ consent or knowledge. These new regulations violate Congress’ intent to ban the sale of health data in the 2009 stimulus bill.

In addition to not being able to control personal health information Americans have no ‘chain of custody’ for their health data, so there is no way to know who is using or selling our health data.

We need a data map to track all the hidden users and sellers of our personal health information, from our DNA, to our diagnoses, to our prescription records:

  • -Watch Professor Sweeney describe the Harvard Data Privacy Lab/Patient Privacy Rights research project to track hidden users of our health data at: http://patientprivacyrights.org/thedatamap/
  • -WE NEED A DATA MAP TO SHOW THE GOVERNMENT IT’S TIME TO FIX THIS PRIVACY DISASTER!

Attend or watch the next health privacy summit June 5-6 in Washington, DC to learn about these urgent health data problems and potential solutions:

The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?

To view the full article by Andrea Peterson in ThinkProgress, please visit: The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?

In the early 1950′s, doctors at Johns Hopkins took the cells from Henrietta Lacks’ tumor and, without her consent, have used them for years for research. Earlier in March, the entire genome of Henrietta Lacks was published with neither the knowledge nor consent of her surviving family. This privacy breach has “started a new chapter in that tale about the complex relationship between researchers and the privacy of genetic information.”

Some key quotes from Dr. William Pewen, Assistant Professor of Public Health and Family Medicine at Marshall University, and a former top health care adviser to the now retired Sen. Olympia Snowe (R-ME):

  • -“The release of Henrietta Lack’s genome illustrates the fact that genetic information isn’t an individual matter — it impacts family members as well. This underscores the need to ensure the rights of individuals and preserve the confidentiality of research data. Once patient privacy is lost, problems are simply compounded. Just how can today’s family members give consent for the next generation?”
  • -“[i]n an age of technology advances and ‘Big Data’ analytics, it’s clear that medical data can be used in countless detrimental ways. That will simply be fostered if we allow ethics and human rights to be undermined by expediency.”

Big Data Is Opening Doors, but Maybe Too Many

To view the full article, please visit Big Data Is Opening Doors, but Maybe Too Many.

Steve Lohr likens today’s Big Data issues to the introduction of the mainframe computer in the 1960s. Even then, new technology threatened the “common notions of privacy”.

A few key quotes from the article:

“…the latest leaps in data collection are raising new concern about infringements on privacy — an issue so crucial that it could trump all others and upset the Big Data bandwagon. Dr. Pentland is a champion of the Big Data vision and believes the future will be a data-driven society. Yet the surveillance possibilities of the technology, he acknowledges, could leave George Orwell in the dust.”

“The World Economic Forum published a report late last month that offered one path — one that leans heavily on technology to protect privacy. The report grew out of a series of workshops on privacy held over the last year, sponsored by the forum and attended by government officials and privacy advocates, as well as business executives. The corporate members, more than others, shaped the final document.”

Re: Your Online Attention, Bought in an Instant

Natasha Singer unearths more about the instantaneous selling of intimately detailed profiles about Americans in her article in The New York Times: Your Online Attention, Bought in an Instant

Best case: We get more ‘targeted’ ads. We supposedly want personalized ads so badly that we willingly give up deeply intimate portraits about who we are to the hidden data mining industry forever. Really? When did we ever have ANY meaningful choice about who collects and sells our most intimate personal information? See Duhigg’s NYTimes story.

Worst case: Hidden, technology enabled discrimination prevents us from getting jobs and destroys our reputations before anyone will meet with us. Companies like Rubicon literally know more about us than our partners, our mothers or fathers, our best friends, our children or our psychoanalysts. This information is used to harm us—-read Prof Sweeney’s paper on how ads like “YOUR NAME, arrested?” pop up next to the names of African-Americans but NOT next to Anglo-sounding names. What happens when future employers see ads like that when searching for information about you online? Read her paper here.

HELP FIX THIS PRIVACY DISASTER
HELP BUILD a map that tracks all hidden users and sellers of our sensitive health information.
DONATE to the Harvard/Patient Privacy Rights’ research project at: https://org2.democracyinaction.org/o/6402/donate_page/donate-to-thedatamap

European citizens have far stronger protections for their sensitive health and personal data than US citizens.
Learn why and learn about solutions to strengthen US data protections. Register for free to attend the 3rd International Summit on the Future of Health Privacy June 5-6 in DC: www.healthprivacysummit.org

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.

Health IT Gurus predict the Next Big App

To view the full article, please visit Health IT Gurus predict the Next Big App.

“Mobile healthcare apps are multiplying fast and putting a vast array of new tools in the hands of patients and the providers who deliver their care. The pace and scope of innovation makes it hard to imagine what app developers will create next. So we put the question to some of the thinkers in the best position to know what’s needed and what’s possible.”

Here are a few key quotes from the article:

Dr. Deborah Peel, founder of Patient Privacy Rights Foundation, a privacy advocacy organization:

“People want control of their information. They want to be able to decide who sees it and make it go away. And so I think that the next big thing in healthcare is going to be that kind of control for patients over their information.”

Dr. Farzad Mostashari, head of the Office of the National Coordinator for Health Information Technology at HHS:

“We are going to be in an era where everyone is going to be looking to improve health and healthcare at lower cost. And we are going to be looking at every underutilized resource in healthcare. And the greatest, the most underutilized resource in healthcare is the patient and their family members…”

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