How the Insurer Knows You Just Stocked Up on Ice Cream and Beer

View the full article at How the Insurer Knows You Just Stocked Up on Ice Cream and Beer.

Your employer already has access to personal medical information such as how often you get check ups and whether you’re taking prescription mediation through your insurance carrier, but now some companies are beginning to monitor where you shop and what you eat.

Some key quotes from the article:

“…But companies also have started scrutinizing employees’ other behavior more discreetly. Blue Cross and Blue Shield of North Carolina recently began buying spending data on more than 3 million people in its employer group plans. If someone, say, purchases plus-size clothing, the health plan could flag him for potential obesity—and then call or send mailings offering weight-loss solutions.”

“Some critics worry that the methods cross the line between protective and invasive—and could lead to job discrimination. ‘It’s a slippery-slope deal,’ says Dr. Deborah Peel, founder of Patient Privacy Rights, which advocates for medical-data confidentiality. She worries employers could conceivably make other conclusions about people who load up the cart with butter and sugar.”

“Analytics firms and health insurers say they obey medical-privacy regulations, and employers never see the staff’s personal health profiles but only an aggregate picture of their health needs and expected costs. And if the targeted approach feels too intrusive, employees can ask to be placed on the wellness program’s do-not-call list.”

Rekindling the patient ID debate

Unique patient identifiers pose enormous implications for patient control and privacy. Dr. Deborah Peel is quoted in this article explaining how detrimental UPIs will be for patient trust and safety. To view the full article, please visit Rekindling the patient ID debate.

Key Quotations:

“The idea of unique patient identifiers (UPIs) is not a concept extracted from the next dystopian novel. It could very well be reality in the not-so-distant future. The question remaining, however, is whether or not the benefits of such technology outweigh constitutional privacy and patient trust concerns.”

“Deborah Peel, MD, founder of Patient Privacy Rights, and a fierce opponent of UPIs, writes in a Jan. 23 Wall Street Journalarticle, ‘In the end, cutting out the patient will mean the erosion of patient trust. And the less we trust the system, the more patients will put health and life at risk to protect their privacy.’

Peel points to the present reality of patient health information – genetic tests, claims data and prescription records – already being sold and commercialized. ‘Universal healthcare IDs would only exacerbate such practices,’ she avers.”

Cloud Computing: HIPAA’s Role

The below excerpts are taken from the GOVinfoSecurity.com article Cloud Computing: HIPAA’s Role written by Marianne Kolbasuk McGee after the January 7, 2013 Panel in Washington D.C.: Health Care, the Cloud, & Privacy.

“While a privacy advocate is demanding federal guidance on how to protect health information in the cloud, one federal official says the soon-to-be-modified HIPAA privacy and security rules will apply to all business associates, including cloud vendors, helping to ensure patient data is safeguarded.

Joy Pritts, chief privacy officer in the Office of the National Coordinator for Health IT, a unit of the Department of Health and Human Services, made her comments about HIPAA during a Jan. 7 panel discussion on cloud computing hosted by Patient Privacy Rights, an advocacy group…

…Deborah Peel, M.D., founder of Patient Privacy Rights, last month sent a letter to the Department of Health and Human Services’ Office for Civil Rights urging HHS to issue guidance to healthcare providers about data security and privacy in the cloud (see: Cloud Computing: Security a Hurdle).

“The letter … asks that [HHS] look at the key problems in cloud … and what practitioners should know and understand about security and privacy of health data in the cloud,” Peel said during the panel.”

OCR Could Include Cloud Provision in Forthcoming Omnibus HIPAA Rule

The below excerpt is from the Bloomberg BNA article OCR Could Include Provision in Forthcoming Omnibus HIPAA Rule written by Alex Ruoff. The article is available by subscription only.

“The final omnibus rule to update Health Insurance Portability and Accountability Act regulations, expected to come out sometime early this year, could provide guidance for health care providers utilizing cloud computing technology to manage their electronic health record systems, the chief privacy officer for the Office of the National Coordinator for Health Information Technology said Jan. 7 during a panel discussion on cloud computing.

The omnibus rule is expected to address the health information security and privacy requirements for business associates of covered entities, provisions that could affect how the HIPAA Privacy Rule affects service providers that contract with health care entities, Joy Pritts, chief privacy officer for ONC, said during the panel, hosted by the consumer advocacy group, Patient Privacy Rights (PPR).

PPR Dec. 19 sent a letter to Health and Human Services’ Office for Civil Rights Director Leon Rodriguez, asking the agency to issue guidance on cloud computing security. PPR leaders say they have not received a response…

…Deborah Peel, founder of Patient Privacy Rights, said few providers understand how HIPAA rules apply to cloud computing. This is a growing concern among consumer groups, she said, as small health practices are turning to cloud computing to manage their electronic health information.”

Health Care, the Cloud, and Privacy, Jan. 7 Panel

Health Care, the Cloud, and Privacy

Phoenix Park Hotel
520 North Capitol Street, NW | Washington, DC 20001
Georgian Room
Monday, January 7, 2013 | 12:00 p.m. ET

On behalf of Patient Privacy Rights (PPR), you are invited to attend a panel discussion on health care system privacy challenges posed by cloud computing. The one-hour discussion, “Health Care, the Cloud, and Privacy,” will be held on Monday, January 7, 2013 at the Phoenix Park Hotel in Washington, D.C. Boxed lunches will be provided.

With technological innovations that promise better efficiency and lower cost, one of the most anticipated developments is how industry and regulators will respond. That question today is focused intently on cloud computing and the implications for corporations with electronic systems containing sensitive consumer health data. Who is handling patient data? How do HIPAA and other health privacy laws and rights function in the cloud? What can policymakers do to better protect our sensitive medical data?

Our distinguished panel will feature:

Joy Pritts
Chief Privacy Officer
Office of the National Coordinator for Health IT
U.S. Department of Health and Human Services

Deborah C. Peel, MD
Founder and Chair
Patient Privacy Rights (PPR)

Nicolas P. Terry
Hall Render Professor of Law
Indiana University Robert H. McKinney School of Law

Lillie Coney
Associate Director
Electronic Privacy Information Center (EPIC)

Please RSVP to Jenna Alsayegh at jalsayegh@deweysquare.com.

We hope to see you there!

And there is more:
View the Invitation as a PDF
View the Press Release

PPR also sent a letter to the Office of Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) that urges for more comprehensive guidance on securing patient data in “the cloud.” With the healthcare industry moving their records to electronic databases, PPR sees a number of issues associated with cloud computing services, including compliance with existing healthcare privacy laws like the Health Insurance Portability and Accountability Act of 1996 (HIPAA), the Health Information Technology for Economic and Clinical Health (HITECH) Act, stronger state and federal health information privacy laws, medical ethics, and Americans’ rights to health information privacy. View the letter here.

Dr. Deborah Peel chosen as one of the ‘Top 10 Influencers of Health InfoSec’

Patient Privacy Rights’ very own Dr. Deborah Peel was chosen as one of the ‘Top 10 Influencers of Health InfoSec”. This honor is given by HealthcareInfoSecurity “to acknowledge leaders who are playing a critical role in shaping the way healthcare organizations approach information security and privacy”.

Dr. Deborah Peel was deemed an “outspoken champion of national patient privacy concerns since 1993. As leader of the advocacy group Patient Privacy Rights, Peel often takes controversial positions on key issues, but she has proven successful in drawing attention to important patient privacy matters. She has testified before Congressional committees on genetic data privacy and medical record privacy.”

From Top 10 Influencers of Health InfoSec:

“Each of these top 10 Influencers makes a substantial impact. Their influence ranges from shaping national health data security and privacy regulations to providing real-life breach prevention insights and leading grass-root efforts to help patients deal with data privacy threats.

Our selections include some of the nation’s most recognized leaders in health information technology. But they also include a few individuals who aren’t in the national spotlight, yet are influential nonetheless.

As electronic health records become ubiquitous, and more information is shared via health information exchanges, the nation needs leaders who are willing to take bold action to ensure patient information is protected.

Our editors chose these individuals for the influence they’ve had over the last year, as well as the impact we expect them to have in 2013 and beyond.”

Kravis Backs N.Y. Startups Using Apps to Cut Health Costs

The title should have been: “Wall Street trumps the Hippocratic Oath and NY patients’ privacy” or “NY gives technology start-ups free access to millions of New Yorkers sensitive health data without informed consent starting in February”.

Of course we need apps to lower health costs, coordinate care, and help people get well, but apps should be developed using ‘synthetic’ data, not real patient data. Giving away valuable identifiable patient data to app developers is very risky and violates patients legal and ethical rights to health information privacy under state and federal law—each of us has strong rights to decide who can see and use personal health information.

What happens when app developers use, disclose or sell Mayor Bloomberg’s, Governor Cuomo’s, Sec of State Hillary Clinton’s, or Peter Thiel’s electronic health records? Or will access to prominent people’s health records be blocked by the data exchange, while everyone’s else’s future jobs and credit are put at risk by developer access to health data?  Will Bloomberg publish a story about the consequences of this decision by whoever runs the NY health data exchange? Will Bloomberg write about the value, sale, and massive technology-enabled exploitation of health data for discrimination and targeted marketing of drugs, treatments, or for extortion of political or business enemies? Natasha Singer of the NYTimes calls this the ‘surveillance economy’.

The story did not mention ways to develop apps that protect patients’ sensitive information from disclosure to people not directly involved in patient care. The story could have said that the military uses “synthetic” patient data for technology research and app development. They realize that NOT protecting the security and privacy of sensitive data of members of the military and their families creates major national security risks.  The military builds and tests technology and apps on synthetic data; researchers or app developers don’t get access to real, live patient data without tough security clearances and high-level review of those who are granted permission to access data for approved projects that benefit patients. Open access to military health data bases threatens national security. Will open access to New Yorkers’ health data also threaten national security?

NY just started a national and international gold rush to develop blockbuster health apps AND will set off a rush by other states to give away or sell identifiable patient health information in health information exchanges (HIEs) or health information organizations (HIOs)—-by allowing technology developers access to an incredibly large, valuable data base of identifiable patient health information.  Do the developers get the data free—or is NY selling health data? The bipartisan Coalition for Patient Privacy (represents 10.3M people) worked to get a ban on the sale of patient health data into the stimulus bill because the hidden sale of health data is a major industry that enables hidden discrimination in key life opportunities like jobs and credit. Selling patient data for all sorts of uses is a very lucrative industry.

Further, NY patients are being grossly misled: they think they gave consent ONLY for their health data to be exchanged so other health professionals can treat them. Are they informed that dozens of app developers will be able to copy all their personal health data to build technology products they may not want or be interested in starting in February?

Worst of all the consequences of systems that eliminate privacy is: patients to act in ways that risk their health and lives when they know their health information is not private:

  • -600K/year avoid early treatment and diagnosis for cancer because they know their records will not be private
  • -2M/year avoid early treatment and diagnosis for depression for the same reasons
  • -millions/year avoid early treatment and diagnosis of STDs, for the same reason
  • -1/8 hide data, omit or lie to try to keep sensitive information private

More questions:

  • -What proof is there that the app developers comply with the contracts they sign?
  • -Are they audited to prove the identifiable patient data is truly secure and not sold or disclosed to third parties?
  • -What happens when an app developer suffers a privacy breach—most health data today is not secure or encrypted? If the app developers signed Business Associate Agreements at least they would have to report the data breaches.
  • -What happens when many of the app developers can’t sell their products or the businesses go bust? They will sell the patient data they used to develop the apps for cash.
  • -The developers reportedly signed data use agreements “covering federal privacy rules”, which probably means they are required to comply with HIPAA.  But HIPAA allows data holders to disclose and sell patient data to third parties, promoting further hidden uses of personal data that patients will never know about, much less be able to agree to.  Using contracts that do not require external auditing to protect sensitive information and not requiring proof that the developers can be trusted is a bad business practice.

NY has opened Pandora’s box and not even involved the public in an informed debate.

Benefits of Online Medical Records Outweigh the Risks- Includes Opposing Quotes from Dr. Deborah Peel

An article written by Larry Magid in the Huffington Post quotes PPR when speaking about the issues surrounding electronic health records. You can view the full article here: Benefits of Online Medical Records Outweigh the Risks.

“There are also privacy concerns. In a 2010 Wall Street Journal op-ed, psychiatrist Deborah Peel, founder of Patient Privacy Rights, complained that ‘lab test results are disclosed to insurance companies before we even know the results.’ She added that data is being released to ‘insurers, drug companies, employers and others willing to pay for the information to use in making decisions about you, your job or your treatments, or for research.’ Her group is calling for tighter controls and recognition that “that patients own their health data.’”

Aggressive New Texas Law Increases Fines, Training Rules; Could Hit CEs Nationwide

Aishealth.com explains the new Texas Medical Privacy Act that has recently been signed into law and quotes Dr. Deborah Peel of PPR in their latest report on patient privacy. The report is only available through subscription but below are a few key points and quotes from it. If you have a subscription to aishealth.com, you can view the full article at Aggressive New Texas Law Increases Fines, Training Rules; Could Hit CEs Nationwide.

“A new Texas law governing the privacy and security of protected health information, perhaps the broadest and among the toughest of such laws in the nation, went into effect on Sept. 1. The Texas Medical Privacy Act, signed into law June 17, 2011, by Gov. Rick Perry (R), not only increases requirements beyond those in HIPAA for organizations that are already covered entities (CEs), but greatly expands the number and type of Texas-based CEs required to comply with the privacy standards in HIPAA and adds a bunch of its own requirements. It contains separate mandates for breach notification of electronic PHI and penalties for violations.

The new law ‘is basically HIPAA, but applies to everyone who touches PHI’ and will have a ‘big impact on entities that get PHI but aren’t technically business associates – which are now effectively covered in Texas and must comply with HIPAA restrictions on use and disclosure,’ says longtime HIPAA expert and Texas attorney Jeff Drummond, a partner in the Dallas office of Jackson Walker LLP.
‘The biggest impact on CEs and BAs are the shorter timeframes for giving access to records and the training requirement,’ he says. And the new law, which amends two existing areas of Texas regulations, carries a punch: the law provides for ‘administrative, civil and criminal penalties’ that dwarf even those that were expanded under HITECH.

The law is likely to have an impact outside of Texas and spur privacy advocates to push for similar legislation in their states or at the national level. One of the most outspoken patient privacy advocates, Austin psychiatrist Deborah Peel, was among those who supported the law, testifying before elected officials during their deliberations in 2011.

‘We hope the Texas law inspires other states to write strong laws that emphatically reject hidden data flows that the data mining and data theft industry profit from at our expense,’ Peel tells RPP. ‘The states can restore
and strengthen personal control over health information – it’s what the public expects from health information technology systems and it’s our right to have [such control].’ Peel adds that “It’s also good business to prevent thousands of people from accessing PHI, [as] fraud, identity theft and medical identity theft are exploding.’”

Promising research may protect health records privacy

To view the full article in Modern Healthcare, please visit Promising research may protect health records privacy.

A recent article in ModernHealthcare.com explains a new and promising technology developed by the Wake Forest School of Medicine’s Department of Biomedical Engineering. They have developed a “prototype health information exchange that both works for providers and restores patient control over the flow of their medical images.” The article explains how the new exchange utilizes “what’s called a Patient Controlled Access-key Registry to manage access for both patients and providers. A patient, who would allow another provider to see his or her records, releases an ‘access key’ with a digital signature at a patient portal.”

The article also quotes Dr. Peel’s views on the new system: “Psychiatrist and patient privacy advocate Dr. Deborah Peel— often a critic of health IT systems that she sees compromising privacy— says she likes what she reads about the Wake Forest pilot. ‘The majority of current HIT systems and data exchanges violate medical ethics and patients’ long-standing rights to control PHI (protected health information,’ Peel wrote in an email Wednesday. ‘Bravo to the Wake Forest research team for finally building effective electronic patient consent tools. Yes, this model solves the legal problems of data sharing. And yes, it builds patient trust in physicians because it restores the personal control over use and disclosure of protected health information that patients expect.’”