Apple and Epic: A privacy disaster? — DeSalvo introduces interoperability roadmap — We stand amended

ASHLEY GOLD | POLITICO’s Morning eHealth | 06/05/14 10:01 AM EDT

APPLE + EPIC ARE PAIRING UP TO TAKE YOUR HEALTH DATA: eHealth’s David Pittman takes a look at the Apple HealthKit announcement and what it means for patient privacy in an article coming out later today. Pretty perfect timing-we’re at the Health Privacy Summit this week, where the topic of who owns patient data and how to protect it is present in everyone’s mind. “Patient privacy watchdogs raised questions regarding privacy and data collection with health apps in Apple’s new operating system, worrying it could usher in a new era of trampled privacy rights…Privacy laws that govern what doctors and hospitals can and cannot do with patient information don’t apply to mobile health apps, meaning they are largely free to sell and disseminate the information collected.” Stay tuned for the full story coming this morning for Pros.

DOES DESALVO KNOW THE WAY…TO INTEROPERABILITY? The Office of the National Coordinator for Health IT is preparing a vision paper on how it hopes to achieve the interoperability of electronic health records, the office’s head, Karen DeSalvo, said Wednesday at the Health Privacy Summit. In addition to outlining ONC’s thoughts, the paper “will be an invitation to folks to come to the table to talk through how we can get there,” DeSalvo said. An ONC spokeswoman said ONC hopes to release the paper later this week.

THIS MORNING, I’m headed to Georgetown Law Center to catch some more of the Health Privacy Summit, which @David_Pittman checked out Wednesday. I’m interested in the privacy debate “That Individuals Should Maintain Their Own Health Data” between the chief privacy officer of IMS Health and a senior associate at Consumer Action. Are people too disengaged or lazy to own their own health data? We shall see.

To view the full article, please visit Apple and Epic: A privacy disaster? — DeSalvo introduces interoperability roadmap — We stand amended

NHS England patient data ‘uploaded to Google servers’, full disclosure demanded

The UK government has been debating illegal disclosures of patient health data: “The issue of which organisations have acquired medical records has been at the centre of political debate in the past few weeks, following reports that actuaries, pharmaceutical firms, government departments and private health providers had either attempted or obtained patient data.”

The article closes with quotes from Phil Booth of medConfidential:

  • “Every day another instance of whole population level data being sold emerges which had been previously denied”.
  • “There is no way for the public to tell that this data has left the HSCIC. The government and NHS England must now come completely clean. Anything less than full disclosure would be a complete betrayal of trust.”

Far worse privacy violations are the norm in the US, yet our government won’t acknowledge that US health IT systems enable hidden sales and sharing of patients’ health data.  US patients are prevented from controlling who sees their health records and can’t obtain real-time lists of who has seen and used personal health data.

Learn how the data broker industry violates Americans’ strong rights to control the use of personal health information in IMS Health Holdings’ SEC filing for an IPO:

  • IMS buys and aggregates sensitive “prescription and promotional” records, “electronic medical records,” “claims data,” “social media” and more to create “comprehensive,” “longitudinal” health records on “400 million” patients.
  • All purchases and subsequent sales of personal health records are hidden from patients.  Patients are not asked for informed consent or given meaningful notice.
  • IMS Health Holdings sells health data to “5,000 clients,” including the US Government.
  • IMS buys “proprietary data sourced from over 100,000 data suppliers covering over 780,000 data feeds globally.”

Data brokers claim they don’t violate our rights to health information privacy because our data are “de-identified” or “anonymized”—-but computer scientists have proven it’s easy to re-identify aggregated, longitudinal data sets:

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This blog was written in response to the following article: NHS England patient data ‘uploaded to Google servers’, Tory MP says

NHS legally barred from selling patient data for commercial use. When will the US wake up?

When will US bar sale of patient data for commercial use?

1st: Public has to wake up.

2nd: The LIE of sale of patient data for research must be exposed.

US law permits any corporation to buy/sell/sell/share patient data for commerce (i.e. BIG DATA analytics and proprietary products without patient consent or knowledge). This is a fact.

deb

This blog was written in response to the following article: NHS legally barred from selling patient data for commercial use