Five More Organizations Join Lawsuit Against NSA Surveillance

National Lawyers Guild, Patient Privacy Rights and The Shalom Center Among 22 Groups Asserting Right to Free Association

 

San Francisco, Ca – infoZine – Five new groups—including civil-rights lawyers, medical-privacy advocates and Jewish social-justice activists—have joined a lawsuit filed by the Electronic Frontier Foundation (EFF) against the National Security Agency (NSA) over the unconstitutional collection of bulk telephone call records. With today’s amended complaint, EFF now represents 22 entities in alleging that government surveillance under Section 215 of the Patriot Act violates Americans’ First Amendment right to freedom of association.

 

The five entities joining the First Unitarian Church of Los Angeles v. NSA lawsuit before the U.S. District Court for the Northern District of California are: Acorn Active Media, the Charity and Security Network, the National Lawyers Guild, Patient Privacy Rights and The Shalom Center. They join an already diverse coalition of groups representing interests including gun rights, environmentalism, drug-policy reform, human rights, open-source technology, media reform and religious freedom.

 

The FBI’s New Wiretapping Plan Is Great News for Criminals

To view the full article, please visit: The FBI’s New Wiretapping Plan Is Great News for Criminals

US technology is designed for ‘exceptions’ and ‘outliers’, i.e., ‘worst-case’ scenarios like terrorists and unconscious patients.

Bruce Schneier concludes  his May 29th  essay:

“Finally there’s a general principle at work that’s worth explicitly stating. All tools can be used by the good guys and the bad guys. Cars have enormous societal value, even though bank robbers can use them as getaway cars. Cash is no different. Both good guys and bad guys send e-mails, use Skype, and eat at all-night restaurants. But because society consists overwhelmingly of good guys, the good uses of these dual-use technologies greatly outweigh the bad uses. Strong Internet security makes us all safer, even though it helps the bad guys as well. And it makes no sense to harm all of us in an attempt to harm a small subset of us.”

Fear-driven technology harms Democracy and health:

  • Example #1: FBI

Bruce Schneier’s essay (below) tells how US-created security flaws help the wrong people (criminals and terrorists) and harm the rest of us (law-abiding citizens).

  • Giving the government access (via back doors, brute force decryption, etc) to everyone’s data to find terrorists is the ‘worst-case’ scenario used to justify destroying strong data security protections.
  • But law-abiding people, businesses, and government really NEED strong data security protections to function everyday online.
  • Criminals and terrorists can exploit the security flaws created to catch them to steal information and harm governments, individuals, and corporations; but ordinary citizens and businesses can’t build or afford security technology to protect their own data.
  • WORST CONSEQUENCES: people will not trust technology and governments, and cyber-wars can destroy people, governments, and corporations.

 

  • Example #2: US health technology systems

The US eliminated data privacy in health technology systems, helping the wrong people (government and corporations) and harming patients.

  • Government and corporations control the use of the nation’s health data. Medical emergencies are the ‘worst-case’ scenario used to justify this technology: if you are unconscious in an emergency room (a one-in-a-million), you can’t give consent to share your data.
  • But the 299,999, 700 million US patients who are awake expect to control use of personal health data in order to trust doctors and technology.
  • Government and industry control use of the nation’s data for various purposes without the knowledge of the public, there is no ‘chain of custody’ for health data and no data map to track uses. Some hidden uses may be beneficial and some may harm patients.  Patients can’t buy or use privacy technology to protect health data.
  • WORST CONSEQUENCES: 40-50 million people/year avoid or delay treatment, or hide information to protect the privacy of health information, risking their lives and health.  Technology causes tens of millions of people who need treatment to suffer bad health outcomes.

 

In a Democracy, judges should approve spying on suspected criminals or terrorists. In a Democracy patients should be asked for consent to use personal health data. Advance directives or break-the-glass technology can permit access to health data when patients are unconscious.

 

In a Democracy, shouldn’t technology support ‘best-case’ scenarios , i.e., citizens’ freedoms and human and civil rights to privacy and health?

Surgery photo leads to privacy lawsuit against Torrance Memorial

“A doctor put stickers on a patient who was under anesthesia, and a photo was taken. The lawsuit underscores how, despite hospitals’ rules, the pervasiveness of cellphones raises concerns about privacy.”

Quotes from Dr. Peel:

“‘The idea that people are using their cellphone or even have one in the operating room is crazy,’ said Dr. Deborah Peel, founder of Patient Privacy Rights, a nonprofit advocacy group in Austin, Texas. ‘It’s a massive security risk and incredibly insensitive to patients.’”

“In similar cases elsewhere, Peel said, hospital personnel often lose their jobs. In 2010, for instance, four employees at St. Mary Medical Center in Long Beach were terminated because they used cellphones to photograph a dead emergency-room patient and shared the photos with others, according to state records.”

To view the full article, please visit: http://www.latimes.com/business/la-fi-hospital-patient-privacy-20130905,0,7915045.story

Privacy Advocates Set Their Sights on the Wrong G-Men

In the wake of NSA revelations, key privacy advocates make the point that private corporations and the government are working to ensure total surveillance of all digital information about all 300 million Americans and lock in billions in corporate revenue from the sale of personal data and detailed digital profiles of everyone in the US.

Corporate and government collection, use, and sale of the nation’s personal data is opaque.  The author of the story below trashes several  privacy advocates and misrepresents their key points about the hidden ‘government-industrial complex’.  And he claims that “Individuals can choose not to use a particular social network, search engine or website.”  But individuals have no meaningful choices online. See the documentary: “Terms and Conditions May Apply”.

The lack of trust online and in all holders of personal data is why President Obama proposed the Consumer Privacy Bill of Rights (CPBOR). Unfortunately the proposed data privacy protections in the CPBOR do not apply to the most sensitive data of all, health data.

Meanwhile,  the ‘government-industrial complex’ is destroying Americans’ most fundamental rights to privacy. The highest right of civilized man is the right to be ‘let alone’—which happens to be the foundation of Democracy.  Yet all we read about are the wonders of ‘big data’ and the need to collect and use personal data without meaningful informed consent. We can certainly use big data for innovation and benefits—but the public wants to be asked permission for all uses of data, especially for ‘research’ uses. Big data analytics is research.

  • See Westin’s research that shows only 1% of the public approves use of health data for research without consent. See more of his findings here.

Today US citizens have no control over their most sensitive personal information: health data from DNA to prescriptions records to diagnoses—-because privacy-destructive technologies and system architectures prevent us from exercising our rights to give meaningful informed consent before health data is collected, used, disclosed, or sold.

To view the full article, please visit: Privacy Advocates Set Their Sights on the Wrong G-Men

Enabling the Health Care Locavore

Here’s a great article written by PPR’s Chief Technical Officer, Dr. Adrian Gropper about “why hip replacement surgery costs 5-10 times as much in the US as in Belgium even though it’s the same implant… JAMA publish[ing] research and a superb editorial on the Views of US Physicians About Controlling Health Care Costs and CMS put[ting] out a request for public comment on whether physicians’ Medicare pay should be made public.”

To view the full article, please visit Enabling the Health Care Locavore on The Health Care Blog.

We want to hear from YOU! Tell us why you think health privacy is important.

Protecting health privacy isn’t just important for your own health and well-being, but what we do now affects future generations too. PPR cares deeply about protecting everyone’s privacy so that people are measured by who they are and what they are capable of, not their medical history.

Currently, there are no limits to the types of organizations that can gain access to sensitive information about you—employers, advertisers, insurers, you name it. It’s so important that we act now to preserve our right to privacy and regain control over our personal information. We believe it should always be up to you to decide what happens to your sensitive information—you should be able to know and control who sees it, where it goes, and why.

People say that privacy is a thing of the past in the Digital Age, but we disagree. In fact, we think people are starting to realize just how important privacy is and that it’s a right worth fighting for. That’s why we want to hear from you. Send us a video telling us why you think health privacy matters and join us in our efforts to protect it.*

Watch the video below to hear Dr. Peel talk about why health privacy is important to her (or click here to view it on YouTube).


*Please note that by sending a video, you are giving PPR permission to display the video on its website or social media pages. However, the video remains the sole property of the copyright holder. Any requests to remove or delete videos will be immediately honored.

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.”

Jonah Goldberg: Civil Libertarians’ Hypocrisy

This insightful piece highlights the drastic violations of our current healthcare system in relation to the recent NSA breach.

Key quote from the article:

“What I have a hard time understanding, however, is how one can get worked up into a near panic about an overreaching national security apparatus while also celebrating other government expansions into our lives, chief among them the hydrahead leviathan of the Affordable Care Act (aka ObamaCare). The 2009 stimulus created a health database that will store all your health records. The Federal Data Services Hub will record everything bureaucrats deem useful, from your incarceration record and immigration status to whether or not you had an abortion or were treated for depression or erectile dysfunction.”

What is Snowden’s Impact on Health IT?

This article expounds upon the implications of Edward Snowden’s actions for the Health IT industry.

Key quotes:

Deborah Peel, MD, founder of Patient Privacy Rights, says there are many parallels between the Snowden controversy and the U.S. healthcare system.

According to Peel, the NSA has one million people with top security clearance to 300 million people’s data. The U.S. healthcare system has hundreds of millions of people — none with top security clearances, and the majority with inadequate basic training in security or privacy — who can access millions of patients’ most sensitive health records. Further, we don’t know how many millions of employees of BAs, subcontractors, vendors and government agencies have access to the nation’s health data, she added.

“Corporations and their employees that steal or sell Americans’ health data for ‘research’ or ‘public health’ uses or for ‘data analytics’ without patients’ consent or knowledge are rewarded with millions in profits; they don’t have to flee the country to avoid jail or charges of espionage,” she said.

“The NSA justifies its actions using the war on terror,” Peel added. “The Department of Health and Human Services claims its actions are justified to lower healthcare costs. These are obviously very different agencies collecting different kinds of very sensitive personal information, but both set up hidden, extremely intrusive surveillance systems that violate privacy rights and destroy trust in government.”

“The benefits of technology can be reaped in all sectors of our economy without the harms if we restore/update our laws to assure privacy of personally identifiable information in electronic systems. Our ethics, principles, and fundamental rights should be applied to the uses of technology,” Peel says.

The Verizon order, the NSA, and what call records might reveal about psychiatric patients

The NSA knows we are sick because we phone doctors’ offices.

As a mental health professional, Dissent Doe explains in her blog (below) how revealing phone call metadata is:

“Because my phone is used mainly for calls to and from patients and clients, can the NSA figure out who my patients are?  And could they, with just a query or bit of analysis, figure out when my patients were going into crisis or periods of symptom worsening?  I suspect that they can. And because I am nationally and internationally known as an expert on a particular disorder, could the government also deduce the diagnosis or diagnoses of my patients or their family members? Probably.”

There is a huge national media response to the NSA spying on Americans’ cell phone calls, but the media does NOT report on the far worse systemic corporate and government spying on the nation’s electronic health records.

The US healthcare system is engineered for hidden corporate and government surveillance of personal data about the minds and bodies of all 300 million Americans –from prescriptions to diagnoses to DNA—it’s all collected and sold.

The US media simply repeats industry and government talking points about the benefits of electronic health systems without reporting on the massive harms:

  • -Millions of patients/year avoid early diagnosis and treatment of cancer, depression, and sexually transmitted diseases because they know that information will not be private (see citations and statistics in:http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf)
  • -1/8 people hide health information because they know that information will not be private
  • -Should we use technology that causes millions to suffer bad outcomes?

2013 is a critical year: every state will share your health data with hundreds-thousands more hidden users via Health Information Exchanges (HIEs).

  • -Many states to not allow you to ‘opt-out’ of HIEs that exchange your health data.
  • -Most states do not allow you to prevent your most sensitive health information from being exchanged.
  • -So far, not one state gives patients control over data exchange.

SIGN PPR’s petition and say “no” to data exchange without your consent at: http://patientprivacyrights.org/2013/06/sign-the-petition-for-patient-controlled-exchange-of-health-information/

We need trustworthy technologies that put patients back in control of the use, disclosure, and sale of their sensitive health data.

  • -Patients have always controlled who could see and use paper medical records.
  • -Now institutions (corporations and government) control who can see and use the nation’s electronic health records.

Great existing technologies can fix badly designed electronic health systems, but we need new laws that require privacy-protective technologies are built into all electronic systems that handle health data.