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 Immortal Life of Henrietta Lacks, the Sequel

This is an amazing article written by Rebekah Skloot, author of ‘The Immortal Life of Henrietta Lacks’, demanding consent and trust.

Rebecca is right—-the only way Americans will trust researchers is when they are treated with respect and their rights of consent for use of genomes and genetic information is restored.

The public does not yet realize that they have no control over ALL sensitive health information in electronic systems. We have NO idea how many hundreds of data mining and research corporations are collecting and using our blood and body parts. We ALSO have no control over our sensitive health information in electronic systems violating hundreds of years of privacy rights.

This week the many stories about CVS showed employers can force employees to take blood tests, health screenings, and be forced into “wellness” programs–all of which REQUIRE collection of sensitive health information—which employees cannot control.

We have NO map of who collects and uses personal health data—Henrietta Lacks family was NEVER asked for consent to use her genome.

Contribute to build a map to track the thousands of hidden users of health data at: www.localhost:8888/pprold

Attend or watch the 3rd International summit on the Future of Health Privacy (free). Register at: www.healthprivacysummit.org

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.”

HIStalk News 3/22/13 – Quotes Dr. Deborah Peel on new CVS policy

To view the full article, please visit HIStalk News 3/22/13.

Key quote from the article:

“Patient Privacy Rights Founder Deborah Peel, MD calls a new CVS employee policy that charges employees who decline obesity checks $50 per month “incredibly coercive and invasive.” CVS covers the cost of an assessment of height, weight, body fat, blood pressure, and serum glucose and lipid levels, but also reserves the right to send the results to a health management firm even though CVS management won’t have access to the results directly. Peel says a lack of chain of custody requirements means that CVS could review the information and use it to make personnel decisions.”

CVS requiring employees to undergo weight, health assessment

To view the full article, please visit CVS requiring employees to undergo weight, health assessment.

Key quotes from the article:

“This is an incredibly coercive and invasive thing to ask employees to do,” Patient Privacy Rights founder Deborah Peel told the Boston Herald, noting that such policies are becoming more prevalent as health costs increase.

“Rising health care costs are killing the economy, and businesses are terrified,” she continued to the Herald. “Now, we’re all in this terrible situation where employers are desperate to get rid of workers who have costly health conditions, like obesity and diabetes.”

“While patient-privacy activists have cried foul, Michael DeAngelis, a CVS spokesman, explained that the goal is health.”

To learn more about the issue, please visit our Health Privacy Summit Website and register for the 3rd International Summit on the Future of Health Privacy.

CVS imposes health penalty if workers’ body weight is not reported or they don’t quit smoking

To view the full article, please visit CVS imposes health penalty if workers’ body weight is not reported or they don’t quit smoking.

CVS has instated a very invasive new policy of charging workers a hefty $600 dollar a year fine if they do not disclose sensitive health information to the company’s benefits firm. According to the article, “Under the new policy, nearly 200,000 CVS employees who obtain health insurance through the company will have to report their weight, blood sugar, blood pressure and cholesterol to WebMD Health Services Group, which provides benefits support to CVS.” However, if employees refuse, they will be charged an extra $50 a month in health insurance costs.

Patient Privacy Rights’ Dr. Deborah Peel tells the public, “‘This is an incredibly coercive and invasive thing to ask employees to do,’…’Rising healthcare costs are killing the economy, and businesses are terrified, Now, we’re all in this terrible situation where employers are desperate to get rid of workers who have costly health conditions, like obesity and diabetes.’”

To learn more about this issue, please visit our Health Privacy Summit Website and register for the 3rd International Summit on the Future of Health Privacy.

CVS Presses Workers for Medical Information

Christine McConville with the Boston Herald interviewed Dr. Peel for a recent story on “a new CVS policy that requires workers who use company health insurance to report their weight, and body fat and glucose levels to the insurer — or pay a $600-a-year penalty.”

From the Boston Herald Article “CVS presses workers for medical information”:

“This is an incredibly coercive and invasive thing to ask employees to do,” said Patient Privacy Rights founder Dr. Deborah Peel, adding that mounting health care costs have made these policies increasingly common.

“Rising health care costs are killing the economy, and businesses are terrified,” Peel added. “Now, we’re all in this terrible situation where employers are desperate to get rid of workers who have costly health conditions, like obesity and diabetes.”

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…”

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.”

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