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?

To view the full article, please visit What is Snowden’s Impact on Health IT?

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.

Prince William’s DNA

As more individuals start posting their genomes or other genetic information online, privacy issues grow. A recent article from GenomeWeb about Prince William’s DNA highlights one of PPR’s concerns about publicly sharing such information: one person’s choice to research and reveal information about themselves reveals information about so many others who had no say in that decision.

To be clear, PPR is not opposed to genetic testing and actually believes there are many new and exciting possibilities that exist within the realm of genetic analysis. However, there are several issues that need to be addressed before people start encouraging others to publicly share their own genetic information. This excerpt from the article sums up the dilemma quite nicely:

“What is noteworthy is the ethics of publishing details of this genetic analysis at all,” Brice says, noting that “one of the major ethical concerns about genetic information and privacy” is that individual information can lead to the disclosures about family members.

The Duke’s cousins are free to have genetic tests if they want, but disclosing information about other, non-consenting individuals, is “highly questionable,” Brice says.

To read the full article, click here. (Note: Free subscription may be required).

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.

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?

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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