Five More Organizations Join Lawsuit Against NSA Surveillance

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“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.”

States Review Rules After Patients Identified via Health Records

To view the full article, please visit States Review Rules After Patients Identified via Health Records.

Key Quotes from the Article:

  • -“Some U.S. states are reviewing their policies around the collection and sale of health information to ensure that some patients can’t be identified in publicly available databases of hospital records.”
  • -Bloomberg News, working with Harvard University professor Latanya Sweeney, reported on June 4 that some patients of Washington hospitals could be identified by name and have their conditions and procedures exposed when a database sold by the state for $50 is combined with news articles and other public information.
  • -The state probes are focused on whether privacy standards for health information should be tightened as data-mining technologies get more sophisticated and U.S. President Barack Obama’s health-care overhaul drives rapid growth in the amount of patient data being generated and shared.
  • -Sweeney’s goal of identifying patients is to show that threats to privacy exist in datasets that are widely distributed and fall outside HIPAA’s regulations.

My Routine – Mark Rothstein, Law Professor

To view the full article, please visit My Routine – Mark Rothstein, Law Professor.

This is a very interesting article about Mark Rothstein’s opinion of current governmental actions involving privacy law. Rothstein asserts, “We live in an age in which consent should not be mistaken for choice. We click through consent on software without even reading it. Even if we technically consented, I doubt very much whether the average person would say, ‘Oh sure, it’s OK for my phone company to accumulate all this data about me.'”

In the interview, Rothstein also comments on the views of Louis D. Brandeis, saying “He felt that the government set the tone for society. If the government doesn’t value privacy and invades people’s privacy, then everybody will do that. He also thought it was very important that government activities be subject to review by the political process and the people.”

What is Snowden’s Impact on Health IT?

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This is a highly interesting article about the effect of Edward Snowden’s actions on health IT. In the interview with PPR’s own Dr. Deborah Peel, the issues of privacy that our government is currently facing can also be applied to the healthcare industry. As Dr. Peel aptly states, “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.”

A key argument that Dr. Peel makes is “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.”

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 Individual’s Right to Restrict Disclosure of Health Information

This article gives a great explanation of how industry has fought to influence those in government that write the ‘rules’ for how federal law works in practice. The key industry tactic is to complain that complying with the law is too costly, or impossible, or would take too much time. For reasons we don’t understand, the government agency that writes the ‘rules’ takes the side of industry rather than defending patients.

From ABA Health eSource, Jim Pyles, “The Right to Obtain Restrictions Under the HIPAA/HITECH Rule:
A Return to the Ethical Practice of Medicine
.

The Individual’s Right to Restrict Disclosure of Health Information
AuthorThe HIPAA/HITECH Final Omnibus Rule issued on January 25, 2013 restores the right for Americans to retain some control over the disclosure of their health information as part of the “floor” of federal privacy protections afforded by HIPAA.(1) Under the new rule, individuals have a right to obtain restrictions on the disclosure of health information in electronic or any other form to a health plan for payment or healthcare operations with respect to specific items and services for which the individual has paid the covered entity out of pocket in full.(2) Such requests for restrictions must be granted by the covered entity unless disclosure is required by law. Covered entities must also include this right in their notices of privacy practices.(3) The guidance in the preamble states that only healthcare providers are required to include such a statement in their notices of privacy practices; however, the language of the statute and the regulation itself states that the notice requirement applies to covered entities.(4) The new rule became effective March 26, and covered entities must be in compliance by no later than September 23, 2013.(5)

————-

1 78 Fed. Reg. at 5628 (January 25, 2013).
2 45 C.F.R. § 164. 522(a)(1)(vi).
3 45 C.F.R. § 164.520(b)(1)(iv).
4 HITECH Act, section 13405(a); 45 C.F.R. § 164.522(a)(1)(vi) (as amended).
5 78 Fed. Reg. at 5566.

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.

States’ Hospital Data for Sale Puts Privacy in Jeopardy

TODAY: watch Prof Sweeney and Jordan Robertson present their research on how easily patients could be re-identified patients from hospital data sold by the state of Washington —at the 3rd International Summit on the Future of Health Privacy in Washington, DC. Register to watch free at: www.healthprivacysummit.org.
Every state sells or gives away sensitive hospital data without regard to how easily it can be re-identified and sold, not just Washington. The buyers may want to sell you something or use your records for employment background checks. Health data is easily available for hidden discrimination.

The solution is all users of personal health data should have to ask first.

The Right to Obtain Restrictions Under the HIPAA/HITECH Rule: A Return to the Ethical Practice of Medicine

To view the full article, please visit: The Right to Obtain Restrictions Under the HIPAA/HITECH Rule: A Return to the Ethical Practice of Medicine.

Great explanation of how industry has fought to influence those in government that write the ‘rules’ for how federal law works in practice. The key industry tactic is to complain that complying with the law is too costly or impossible or would take too much time. For reasons we don’t understand, the government agency that writes the ‘rules’ takes the side of industry rather than defending patients.

GOP senators seek to ‘reboot’ federal health IT policy, unveil white paper

This article is by subscription only: GOP senators seek to ‘reboot’ federal health IT policy, unveil white paper

“Key GOP senators released a white paper Tuesday (April 16) raising concerns with federal policy on health information technology, and the lawmakers seek feedback from stakeholders — including the administration, hospitals and vendors – on how the program can be improved. The senators worry that the $35 billion allocated to health IT in the 2009 stimulus package is being spent inefficiently and suggest Congress, the administration and stakeholders work together to “reboot” the electronic health record incentive program so that it to accomplish its goals.”

Materials of interest:

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