Google’s Larry Page wants to ‘save 100,000 lives’ by analyzing your healthcare data

By Eerke Boiten, University of Kent | June 28, 2014

Talking up the power of big data is a real trend at the moment and Google founder Larry Page took it to new levels this week by proclaiming that 100,000 lives could be saved next year alone if we did more to open up healthcare information.

Google, likely the biggest data owner outside the NSA, is evidently carving a place for itself in the big data vs life and death debate but Page might have been a little more modest, given that Google’s massive Flu Trends programme ultimately proved unreliable. Big data isn’t some magic weapon that can solve all our problems and whether Page wants to admit it or not, it won’t save thousands of lives in the near future.

Big promises

Saving lives by analysing healthcare data has become a major human ambition, but to say this is a tricky task would be an enormous understatement.

In the UK, the government has just produced a consultation on introducing regulations for protecting this kind of information alongside care.data, a huge scheme aiming to make health records available to researchers and others who could work with it.

Given the ongoing care.data debacle, this is a broadly sensible document and a promising start for consultation. In particular, it identifies different levels of data. Data that could be used to identify an individual person should not be shared in the same way as other types of data.

But, like Page, the UK government is also presenting a false vision for big data. It has said review after review have found that a failure to share information between healthcare workers has led to child deaths. It’s an emotive admission but rather beside the point in the big data perspective.

It is indeed entirely credible that many tragic failures within the NHS might have been prevented by someone sharing the right information with the right person. Sharing is essential, but when the NHS talks about sharing, it means linking and sharing large medical databases between organisations. Surely no case review has ever claimed that the mere existence of a larger database of information would have got the right knowledge to the right person.

Medical data sharing may be a good thing in many ways, but unfortunately there is no clear case yet that it prevents child deaths and other tragedies. It is only big data, not magic. Preventing child deaths appears to be brought in as emotional blackmail, expected to trump the valid concerns over the NHS’ big data plans.

To view the full article, please visit Google’s Larry Page wants to ‘save 100,000 lives’ by analyzing your healthcare data

Your Doctor Knows You’re Killing Yourself. The Data Brokers Told Her.

Shannon Pettypiece and Jordan Robertson | Bloomberg News | Jun 26, 2014 11:35 AM CT

You may soon get a call from your doctor if you’ve let your gym membership lapse, made a habit of picking up candy bars at the check-out counter or begin shopping at plus-sized stores.

That’s because some hospitals are starting to use detailed consumer data to create profiles on current and potential patients to identify those most likely to get sick, so the hospitals can intervene before they do.

Information compiled by data brokers from public records and credit card transactions can reveal where a person shops, the food they buy, and whether they smoke. The largest hospital chain in the Carolinas is plugging data for 2 million people into algorithms designed to identify high-risk patients, while Pennsylvania’s biggest system uses household and demographic data. Patients and their advocates, meanwhile, say they’re concerned that big data’s expansion into medical care will hurt the doctor-patient relationship and threaten privacy.

Related:

“It is one thing to have a number I can call if I have a problem or question, it is another thing to get unsolicited phone calls. I don’t like that,” said Jorjanne Murry, an accountant in Charlotte, North Carolina, who has Type 1 diabetes. “I think it is intrusive.”

Acxiom Corp. (ACXM) and LexisNexis are two of the largest data brokers who collect such information on individuals. Acxiom says their data is supposed to be used only for marketing, not for medical purposes or to be included in medical records. LexisNexis said it doesn’t sell consumer information to health insurers for the purposes of identifying patients at risk.

To view the full article, please visit Your Doctor Knows You’re Killing Yourself. The Data Brokers Told Her.

Risking OCR and Patient Ire, Many CEs Don’t Comply With Patient Access Rules

June 2014 Volume 14 Issue 6
aishealth.com

REPORT ON PATIENT PRIVACY delivers timely news and business strategies for safeguarding patient privacy and data security.

In apparent defiance of final HITECH regulations, many HIPAA covered entities (CEs) are not offering patients the option of receiving an electronic copy of their medical records, let alone in the “form and format” of their choosing, as has been required since January 2013.

Some are imposing fees for copies and applying limits on what they will provide that do not appear to be in line with regulations. Health systems with multiple hospitals have implemented the access requirements inconsistently across their medical centers, meaning some may be in compliance while others are not.

All of this is evident on the websites of covered entities, in their pages that outline the policies and procedures for patients to obtain their protected health information (PHI) — so officials from the Office for Civil Rights (OCR) can readily see it also. An OCR spokeswoman tells RPP “we can and we have” brought enforcement actions against CEs who violate the access requirements.

Patient advocates, medical records providers, privacy experts and others also tell RPP of a multitude of likely unlawful hoops imposed by CEs that people are jumping through to try to get their records.
“Unless you are behind the curtain like I am or unless you start finding the right stones to turn over, you don’t ever get to see the horror show that really exists in various degrees across the country,” says Chris Carpenter, director of operations for Diversified Medical Record Services, Inc. (DMRS), a business associate that processes records requests for hospitals and physicians offices nationwide.

To view the full article, please visit Risking OCR and Patient Ire, Many CEs Don’t Comply With Patient Access Rules

ONC unveils 10-year plan for healthcare interoperability

Dan Bowman | FierceHealthIT | June 5, 2014

By 2024, the national health IT infrastructure and data standards will evolve to support robust information sharing and aggregation, creating a “continuous learning” environment for care, according to an ONC paper published today.

The Office of the National Coordinator for Health IT outlined a 10-year plan to develop an interoperable health IT ecosystem that can simultaneously improve population health, boost patient engagement and lower costs.

The agency shared a set of five “critical building blocks” for achieving its goals, while also revealing its expectations for three, six and 10 years down the road.

National Coordinator for Health IT Karen DeSalvo, at the Patient Privacy Rights Summit in the District of Columbia on June 4, talked about the importance of getting feedback from multiple stakeholders for the paper, published in the wake of ONC’s recently announced realignment, which aims to streamline processes as federal funding dries up.

“Though at ONC we have set interoperability to connect care and information on behalf of patients and consumers as a high priority … I want to make sure that it’s clear to folks that we didn’t do that in our box at Humphrey,” DeSalvo said. “We spent the first few months doing quite a bit of informal … and formal environmental scans, looking for what kinds of writings, letters, comments we were receiving from our stakeholders of all walks.”

While the current health system has the capability to capture data at rest and in silos, DeSalvo said, to really make it powerful, it needs to be able to move safely and securely for the benefit of people.

“Interoperability … is so complex,” she said. “It requires all of us to have some shared responsibility thinking through how we’re going to get there in a way that meets everyone’s needs and expectations.”

To view the full article, please visit ONC unveils 10-year plan for healthcare interoperability

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

Tech Groups Press Again On ECPA Reform : Support Email Privacy

Patients need and want to use secure, encrypted email to communicate with health professionals. Why should the government be able to look at our email without a warrant?

The 1986 Electronic Communications Privacy Act (ECPA) must be updated to stop the government from reading our email without approval from a judge.

From the letter to President Obama signed by 81 groups, including Patient Privacy Rights, that asked him to champion fixing the ECPA:

  • “We write today to urge you to support reform of the Electronic Communications Privacy Act (ECPA) to guarantee that every American has full constitutional and statutory protections for the emails, photos, text messages, and other documents that they send and share online.”

“A warrant based on the probable cause standard is required for searches of U.S. mail, searches of a home, or even electronic communications that are not stored with companies like Google or Yahoo.” The same protections are just as important for email between doctors and patients!

Support for “email privacy” is bipartisan, see:  #ECPAReform http://bit.ly/1rAW7MY

Join us in telling the President to pursue #ECPAReform www.NotWithoutaWarrant.com http://bit.ly/1rAW7MY

URL for POLITICO article:  http://www.politico.com/morningtech/0414/morningtech13755.html

POLITICO Morning Tech:  FIRST LOOK: TECH GROUPS PRESS AGAIN ON ECPA REFORM — A gaggle of tech advocacy and industry groups are again imploring the White House to put their weight behind email privacy reform, and this time making clear that any loopholes for civil agencies would be a nonstarter. The groups, led chiefly by the Digital 4th and Digital Due Process coalitions, have been ramping up their ECPA reform push in the hopes of convincing Washington to tackle an issue that they see as low-hanging fruit. In a letter to President Obama today, they want the White House to know that they won’t support any warrant requirement carve-out for federal agencies like the Securities and Exchange Commission. “Seemingly, the only major impediment to passage is an objection by administrative agencies like the Securities and Exchange Commission, which would like to gut the legislation as a way to expand their investigative authorities,” write the groups, which include TechNet, Reddit, the Electronic Frontier Foundation and the ACLU. “Such an agency carve out would be a major blow to reform efforts, allowing increased government access to our communications during the many civil investigations conducted by federal and state agencies.” Full letter here: http://bit.ly/1kfKrfX

 

deb

 

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

Judge Rules Patients Have a Reasonable Expectation of Privacy in Rx Records

The ACLU recently challenged the Drug Enforcement Administration’s practice of obtaining Oregon patients’ confidential prescription records without a warrant. PPR’s Dr. Deborah Peel submitted a declaration in support of the ACLU’s position, which you can read here.

 

Good news: It’s a win for privacy! In an opinion issued today, the judge ruled that patients have a reasonable expectation of privacy in their prescription records under the Fourth Amendment, and that the DEA needs a warrant to obtain records from the Oregon Prescription Drug Management Program (PDMP).

 

To read the judge’s opinion, click here.

 

To read more from Nathan Wessler, an ACLU attorney working on the case, click here.

 

Revelations by AOL Boss Raise Fears Over Privacy

By Natasha Singer
NYTimes.com, February 10, 2014

Tim Armstrong, the chief executive of AOL, apologized last weekend for publicly revealing sensitive health care details about two employees to explain why the online media giant had decided to cut benefits. He even reinstated the benefits after a backlash.

Tim Armstrong, the chief executive of AOL, apologized last weekend for publicly revealing sensitive health care details about two employees to explain why the online media giant had decided to cut benefits. He even reinstated the benefits after a backlash.

But patient and work force experts say the gaffe could have a lasting impact on how comfortable — or discomfited — Americans feel about bosses’ data-mining their personal lives.

Mr. Armstrong made a seemingly offhand reference to “two AOL-ers that had distressed babies that were born that we paid a million dollars each to make sure those babies were O.K.” The comments, made in a conference call with employees, brought an immediate outcry, raising questions over corporate access to and handling of employees’ personal medical data.

“This example shows how easy it is for employers to find out if employees have a rare medical condition,” said Dr. Deborah C. Peel, founder of Patient Privacy Rights, a nonprofit group in Austin, Tex. She urged regulators to investigate Mr. Armstrong’s disclosure about the babies, saying “he completely outed these two families.”

To view the full article, please visit Revelations by AOL Boss Raise Fears Over Privacy