Here’s Scary: Your Social Security Number Is Just a Click Away

From Nancy Smith of the Sunshine State News:

Snafus involving the mandated switch from paper to electronic medical records have been happening for the last few years as the Affordable Care Act geared up. Horror stories — like the one about a California orthopedic surgeon whose medical-records software provider sold his patients’ records to anybody who wanted them — are more common than most people realize. Read the incredible story.

“This is a nightmare. It’s nothing we’ve ever seen before in medicine,” said patient privacy-rights advocate Dr. Deborah Peel.

Peel said many patients and doctors don’t know the federal government quietly eliminated patients’ privacy rights for electronic records. “It’s a free-for-all,” she said. “It’s the Wild West. Today there are over 4 million different kinds of organizations and companies that can see and use our medical records without our knowledge, without our permission and we can’t refuse.”

Peel said we can actually thank Healthcare.gov, the Obamacare sign-up website, for waking us up and making us think about what happens to our personal health information on a big bureaucratic website.

All of a sudden, Americans get it, she said — and the Obama administration isn’t pleased at having to deal with another strain of negativity in the rollout of its health plan. The government, remember, spent some $2 billion just to encourage the adoption of electronic health records.

Peel, a physician and probably the most renowned national speaker on health privacy, believes Healthcare.gov will amount to government surveillance of all health information unless some mobile “app” is developed so patients can access and control the dispersal of their own data, with Social Security numbers at the top of the list.

“Health information is the most valuable personal data about you, bar none,” Peel said. “We (at Patientprivacyrights.org) tremendously support technology, but technology that’s smart, that serves you and does what you expect — that doesn’t serve hidden industries that steal data or (is subject to) government surveillance. Government technology could put us in much better control of our information.

“We need to develop a mobile ‘app’ that would let you find out what happens to your information We need new technology and privacy protections to be put in place.” See Peel’s remarks on Patientprivacyrights.org.

Please click here to read the full article.

The Reports of the Death of Privacy Were Exaggerated: California Breathes New Life into the Privacy Rights of its Residents

Vast NSA troves of phone and email data and the huge focus on HealthCare.gov’s website provoked intense public concern about hidden uses and sales of personal data…..especially personal health data.

But there is great news from California:  tough new laws to protect data privacy were enacted in September.  See: “The Reports of the Death of Privacy Were Exaggerated: California Breathes New Life into the Privacy Rights of its Residents”, Tuesday, November 19, 2013, by Sharon R. Klein and Odia Kagan

States like CA and TX (HB 300) passed new laws because state residents are demanding stronger data privacy protections, and Congress and federal agencies have failed to act.

Key new data privacy protections in CA:

“Business(es) offering software or hardware to consumers… designed to maintain medical information or to assist in the diagnosis and treatment of individuals” must:

Press your state lawmakers to pass strong new data protection laws like California’s.  People want technology that protects privacy. They won’t trust companies and government that eliminate privacy and use personal data without consent.

A Fraying of the Public/Private Surveillance Partnership

To view the full article, please visit: A Fraying of the Public/Private Surveillance Partnership

The lack of data security and privacy on the ‘HealthCare.gov’ triggered national outrage.For the first time patient privacy is a national issue.

Healthcare.gov’s serious technology flaws sparked huge privacy fears even though ONLY one piece of health data is collected, “Do you smoke?”.

The public now fears that the US government and the health IT industry don’t protect sensitive personal health data. Rightly so. See:

 

But current US health IT systems also enable hidden armies of corporations and government agencies to use sensitive personal health data without patient consent.

If our health data was actually private, how could it be sold on the Internet? Three short videos:

 

We have no map of all the hidden flows of our health data. See examples mapping the hidden flows of US health data:

o   states sell health data: http://thedatamap.org/states.html

o   top buyers of health data: http://thedatamap.org/buyers.html

o   data breaches reveal who purchased health data: http://thedatamap.org/history.html

o   health data is easy to re-identify: http://thedatamap.org/risks.html

The consequences of the lack of patient privacy (control over personal health data) are millions people act to keep health data private:

  • Today 40-50 million people/year act to try to keep health data private:

o   37.5 million people every year hide information to try to keep it private

§  November, 2005. National Consumer Health Privacy Survey, California Healthcare Foundation:http://www.chcf.org/publications/2005/11/national-consumer-health-privacy-survey-2005

o   Over 5 million every year avoid or delay early diagnosis for cancer, mental illness, or sexually-transmitted diseases

§  65 Fed. Reg. at 82,779, 65 Fed. Reg. at 82,777, 65 Fed. Reg. at 82,778

§  Or see page 7: http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf

Technology can ensure all the benefits and prevent harms. The idea that we must surrender privacy forever to ‘wire’ the healthcare system is false.

Technology should “do no harm” to patients. The cure is to use tough privacy-enhancing technologies.

Healthcare.gov sends user information to third parties, violating its own privacy policy

You might be interested in this story “Healthcare.gov sends user information to third parties, violating its own privacy policy.” 

The site sends user information to third parties like Pingdom and DoubleClick that are hidden data collectors.  Here you can find a screenshot in which Ghostery is used to show 7 hidden trackers: Healthcare.gov trackers

 

Why The Experts Are Probably Wrong About The Healthcare.gov Crack-Up

“Many technology experts are blaming the software behind Healthcare.gov for all the problems Americans have encountered while trying to sign up for health insurance in accordance with the Affordable Care Act.”

This interesting article explores what is wrong and what is right about healthcare.gov. To view the full article, please visit Why The Experts Are Probably Wrong About The Healthcare.gov Crack-Up.