Canadian Woman Denied Entry To U.S. Because Of Her Medical History

This story deeply troubles me as a practicing psychiatrist and Freudian psychoanalyst. It’s appalling to see technology used in ways that increase the harms and stigma people with mental illness and addiction endure.
 
 
The story is about a disabled Canadian woman denied the right to travel by a U.S. Customs and Border Protection agent because of her history of hospitalization for Depression.
 
Quotes from the story about the agent who denied her US entry for the cruise:
  •   He cited the U.S. Immigration and Nationality Act, Section 212, which denies entry to people who have had a physical or mental disorder that may pose a “threat to the property, safety or welfare’’ of themselves or others.
  •    The agent gave her a signed document which stated that “system checks’’ had found she “had a medical episode in June 2012’’ and that because of the “mental illness episode’’ she would need a medical evaluation before being accepted.
How did the US obtain electronic health data on Canadian citizens?
How frequently is the US Government accessing the electronic health records of Canadians?
How frequently is the US Government (and state governments) accessing our electronic health records?
 
Partial answers come from a CBC News story with information from Wikileaks. Quotes:
  • According to an RCMP (Royal Canadian Mounted Police) website, the CPIC (Canadian Police Information Centre) database stores 9.6 million records in its investigative databanks.
  • The RCMP and U.S. law enforcement agencies provide reciprocal direct access to each other’s criminal databases in order to stem the flow of narcotics and criminal dealings into North America, according to the WikiLeaks cable.
  • When asked about the sharing of police information for security purposes, Kamenitz says the government is “obviously not considering what the impact of that can be and how much that can alter a person’s life.”
 
How does the US use electronic health information on American citizensor people with histories of treatment for mental illness or hospitalization?  
 
This is ominous because of the proliferation of federal laws requiring that state data bases of involuntary commitments for hospitalization be reported to the National Instant Criminal Background Check System (NICS) to prevent violent mentally ill people from buying gunsand the proliferation of state Prescription Drug Monitoring Programs (PDMs) for controlled substances. 
  • (FYI—-Currently US patients are denied their federal rights to have a list of who used their electronic health records and why—the war over the regulations to implement this critical consumer protection is intense. Industry has held this up for almost 5 years claiming its too hard, too expensive, no technology exists, it will burden and scare patients to see how many 1000s of access there are every day, etc, etc.)
There is a huge state and national push to build/use data bases about mental illness or addiction for many purposes. 

 

It’s the same phenomena we saw in 2009 when the technology industry got $29B in subsidies for health IT written into the stimulus bill—despite the absence of interest or support of the majority of patients and physicians. See story by Robert O’Harrow on “The Machinery Behind Healthcare Reform”: http://www.washingtonpost.com/wp-dyn/content/article/2009/05/15/AR2009051503667.html 
Every family and every person is close to someone suffering from Depression, addiction, or another mental illnesses. The lack of privacy already drives over 2 million people a year away from treatment for Depression and major mental illness.
 
This is truly a national tragedy. Knowing the US government accesses the nation’s electronic health records will discourage even more people from seeking treatment for serious mental illnesses that are VERY treatable.  
 
Best,
Deborah

What a Small Moment in the Obamacare Debate Says About Ideological Media

Politics aside, a huge majority of the public agrees that ALL personal information should be protected online, not just when they apply for Obamacare, use electronic health systems, or search online about health.  The right to control the use of personal health data is strongly supported by 95% of Americans.

But like the public, the author doesn’t know that government and corporations already have access to every citizen’s personal health information. See: http://patientprivacyrights.org/truth-hipaa/  HIPAA has not protected our rights to health ‘privacy’ since 2002.

Key conclusions:

  • “The Bush and Obama Administrations both showed with perfect clarity that they don’t give a damn about the privacy rights of Americans; federal bureaucrats serving in both eras have broken the law to hoover up our private information; and every trend points to a federal government intent on expanding its ability to collect information on Americans and share it among agencies. The U.S. has also shown an inability to protect data it stores from being hacked or stolen. Given all that, it isn’t paranoid to imagine that any health information handed over to the federal government won’t remain private for long. A betting man would be wise to conclude that somehow or other, it will at least be seen more widely than Obama Administration officials are promising—especially if additional steps aren’t taken to make the information better protected.”
  • “Outsmarting the most hackish Republicans isn’t enough to fix the flaws in legislation that you championed and passed, substantial warts and all.”

Congress must pass a strong new law soon to giving patients a clear, strong right to control personal health information.  We should decide who can see and use our most sensitive personal information. The nation’s trust in government will only worsen if we cannot protect even our MOST sensitive personal data, from prescription records, to DNA to diagnoses.

deb

This blog was written in response to the following article: What a Small Moment in the Obamacare Debate Says About Ideological Media

Google to Sell Users’ Endorsements

The New York Times posted an article reminding us about the permanence of our digital footprints.  Those old posts are never forgotten and can now be used by Google to make a profit.

“Those long-forgotten posts on social networks, from the pasta someone photographed to the rant about her dentist, are forgotten no more. Social networks want to make them easier to find, and in some cases, to show them in ads.  Google on Friday announced that it would soon be able to show users’ names, photos, ratings and comments in ads across the Web, endorsing marketers’ products. Facebook already runs similar endorsement ads.”

“’People expect when they give information, it’s for a single use, the obvious one,’ said Dr. Deborah C. Peel, a psychoanalyst and founder of Patient Privacy Rights, an advocacy group. ‘That’s why the widening of something you place online makes people unhappy. It feels to them like a breach, a boundary violation.’”

“’We set our own boundaries,’” she added. ‘We don’t want them set by the government or Google or Facebook.'”

“Dr. Peel said the rise of new services like Snapchat, which features person-to-person messages that disappear after they are opened, showed how much people wanted more control over how their information was shared.”

To view the full article click here

ONC: Looking for ‘realistic’ ways to account for disclosures

“ONC’s Health IT Policy Committee Tiger Team held a virtual hearing Sept. 30 to gather information about the rule and explore ‘realistic ways to provide patients with greater transparency about the uses and disclosures of their digitized, identifiable information,’ according to a Sept. 23 blog post by Committee Chair Devon McGraw. The Tiger Team asked for answers to specific questions, such as what patients want to know and how transparency technologies currently are being used by covered entities.”

“Deborah Peel, Founder and Chair of the Patient Privacy Rights coalition, suggested in her testimony that accounting for disclosures needs to include all of the detailed information about all uses of a patient’s electronic health information; she added that the rule could be implemented by ‘piggybacking’ onto existing initiatives, such as the Blue Button movement.”

Read more: ONC: Looking for ‘realistic’ ways to account for disclosures – FierceEMR

To read Dr. Peel’s testimony on Accounting for Disclosures click here

Security and Privacy of Patient Data Subject of Regulatory Hearing

Representatives of patients, providers, insurers and tech companies testify before federal panel yesterday at the HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures.

“We believe it’s the patient’s right to have digital access that is real-time and online for accounting of disclosures,” said Dr. Deborah Peel, the head of Patient Privacy Rights, a group she founded in 2004. Patients “need and want the data for our own health. We need to have independent agents as advisors, independent decision-making tools, we need independence from the institutions and data holders that currently control our information. We need to have agents that represent us, not the interests of corporations,” she said.

“I think the day will come when people will understand that their health information is the most valuable personal information about them in the digital world and that it’s an asset that should be protected in the same way that they protect and control their financial information online,” Peel said.

To view the full article click Security and Privacy of Patient Data Subject of Regulatory Hearing

To view a PDF of the hearing click HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures

 

Helmet cams raise privacy, liability concerns

“Every time Austin Fire Department Engine 20 rolls toward an emergency call, firefighter Andrzej Micyk straps on a bright yellow helmet to protect himself from heat and falling debris…and a tiny, high-definition video camera that captures…every move — from how he interacts with the public to what he does to gain control of an inferno.”

To view a video the Statesman published with this article, click here

To view the full article click here


Comments from Dr. Peel: “Other major national fire departments ban helmet cams. The Austin TX Fire Dept has no policy about personal helmet cams. The key problem for the public is firefighters often respond to medical emergencies. Should someone with a heart attack or suicide attempt end up on YouTube?”

“This story raises questions about citizens’ rights to health privacy that are similar to the problems that occur when hospital and emergency room employees use cell phones to take pictures of patients.” See recent example: http://abcnews.go.com/Health/woman-sues-hospital-sticker-prank-surgery/story?id=20204405

“In a different context, police cars use video cameras to document encounters with citizens who are potentially breaking the law. In this case, videos serve a very different purpose and protect both citizens and members of the police.”

 

Pairing patient privacy with health big data analytics

“Health privacy and security are often mentioned in tandem, but Deborah Peel, Founder and Chair of Patient Privacy Rights and Adrian Gropper, Chief Technology Officer of Patient Privacy Rights, took a different view in a recent Institute for Health Technology Transformation (iHT2) webcast.”

“The presentation, titled “Competing for Patient Trust and Data Privacy in the Age of Big Data” detailed a few of the nuances between patient data privacy and security and why privacy is so significant as healthcare organizations pull together huge data sets for health information exchange (HIE) and accountable care.”

To view the full article, please visit: Pairing patient privacy with health big data analytics

The webcast can be viewed at: Competing for Patient Trust and Data Privacy in the Age of Big Data Webinar

Five More Organizations Join Lawsuit Against NSA Surveillance

To view the full article, please visit: Five More Organizations Join Lawsuit Against NSA Surveillance

“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.”

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.

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.”