IMS Health Files for IPO – Is It Legal?

On January 2nd, IMS Health Holdings announced it will sell stock on the New York Stock Exchange. IMS joins other major NYSE-listed corporations that derive significant revenue from selling sensitive personal health data, including General Electric, IBM, United Health Group, CVS Caremark, Medco Health Solutions, Express Scripts, and Quest Diagnostics.

  • 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.
  • Despite claims that the data sold is “anonymous”, computer science has long established that re-identification is easy.
  • See brief 3-page paper by Narayanan and Shmatikov at: http://www.cs.utexas.edu/~shmat/shmat_cacm10.pdf)
  • See Prof. Sweeney’s paper on re-identifying patient data sold by states like WA at: http://thedatamap.org/risks.html
  • “Our solutions, which are designed to provide our clients access to our deep healthcare-specific subject matter expertise, take various forms, including information, tailored analytics, subscription software and expert services.” (from IMS Health Holding’s SEC filing)

 

Quotes from IMS Health Holding’s SEC filing:   “We have one of the largest and most comprehensive collections of healthcare information in the world, spanning sales, prescription and promotional data, medical claims, electronic medical records and social media. Our scaled and growing data set, containing over 10 petabytes of unique data, includes over 85% of the world’s prescriptions by sales revenue and approximately 400 million comprehensive, longitudinal, anonymous patient records.”   IMS buys “proprietary data sourced from over 100,000 data suppliers covering over 780,000 data feeds globally.”

How can this business model be legal?  How can companies decide that US citizens’ personal health data is “proprietary data,” a corporate asset, and sell it?  If personal health data ‘belongs’ to anyone, surely it belongs to the individual, not to any corporation that handles, stores, or transmits that information.

Americans’ strongest rights to control personal information are our rights to control personal health information. We have constitutional rights to health information privacy which are not trumped by the 2001 elimination of the right of consent from HIPAA (see: http://patientprivacyrights.org/truth-hipaa/ ). HIPAA is the “floor” for privacy rights, not the ceiling. Strong state and federal laws, and medical ethics require consent before patient data is used or disclosed. 10 state constitutions grant residents a right to privacy, and other states constitutions have been interpreted as giving residents a right to privacy (like TX).

Surely FTC would regard the statement filed with the SEC as evidence of unfair and deceptive trade practices. US patients’ health data is being unfairly and deceptively bought and sold.  Can the SEC deny IMS Health the opportunity to offer an IPO, since its business model is predicated on hidden purchase and sale of Americans’ personal health data?

If we can’t control the use and sale of our most sensitive personal information, data about our minds and bodies, isn’t our right to privacy worthless?

deb

To view the full article published in Modern Healthcare visit:  IMS Health Files for IPO

 

Data Mining to Recruit Sick People

Companies Use Information From Data Brokers, Pharmacies, Social Networks

Some health-care companies are pulling back the curtain on medical privacy without ever accessing personal medical records, by probing readily available information from data brokers, pharmacies and social networks that offer indirect clues to an individual’s health.

Companies specializing in patient recruitment for clinical trials use hundreds of data points—from age and race to shopping habits—to identify the sick and target them with telemarketing calls and direct-mail pitches to participate in research.

“I think patients would be shocked to find out how little privacy protection they have outside of traditional health care,” says Nicolas P. Terry, professor and co-director at the Center for Law and Health at Indiana University’s law school. He adds, “Big Data essentially can operate in a HIPAA-free zone.”

FTC Commissioner Julie Brill says she is worried that the use of nonprotected consumer data can be used to deny employment or inadvertently reveal illnesses that people want kept secret. “As Big Data algorithms become more accurate and powerful, consumers need to know a lot more about the ways in which their data is used,” Ms. Brill says.

To view the full article, please visit: Data Mining to Recruit Sick People (article published December 17, 2013)

 

 

The Truth About HIPAA – It Hasn’t Changed

Everyone thinks HIPAA protects personal health data. It doesn’t.

The most valuable data collected and sold by US “data brokers” is sensitive personal health information.

US “data brokers” capture sensitive health information by tracking our searches, social media, phone apps and GPS data. The majority of US healthcare institutions, health-related state and federal government agencies, and health technology vendors are also “data brokers”.

HIPAA gave millions of hidden institutions, healthcare providers, and technology vendors the right to control, use, and sell our medical records, prescriptions, lab tests, claims data, and more. HIPAA gave them the right to be “data brokers”.

If the President’s Consumer Privacy Bill of Rights (CPBOR) was the law of the land AND also was applied to the healthcare system, patients could control who collects and uses health data—not “data brokers”.

The CPBOR’s strong new rights to control the use of personal data could end the use of data for discrimination in every area of life, including  jobs, credit, mortgages, and opportunities.

The EU got it right:  no government agency or corporation in the EU can collect, use, or sell personal data without permission.

deb

This blog was written in response to the following article: Senators call for consumer privacy protections

 

Testimony of Deborah C. Peel, MD at the ONC’s Patient Matching Stakeholder Meeting

WASHINGTON, DC (December 16, 2013) – Patient Privacy Rights’ (PPR) founder and chair, Deborah C. Peel, MD, submitted written testimony to the U.S. Department of Health and Human Services’ Office of the National Coordinator (ONC) at today’s Patient Matching Stakeholder Meeting. The meeting discussed the initial findings from the ONC’s dedicated initiative to assess which aspects of patient identification matching are working well, where there are gaps, and where improvements are needed.

 

In her prepared testimony, Dr. Peel said that “the Initial Findings address the problems caused by current institutional health information technology (health IT) systems and data exchanges.” However, she also stated that the findings may not adequately address future needs, nor do they foresee how the meaningful use requirements for the Health Information Technology for Clinical Health (HITECH) Act can resolve many of the current problems with patient identity and patient matching.

 

Arguing that the findings present a tremendous opportunity to create and leverage genuine patient engagement, Dr. Peel said that “patients have more interest and stake in data integrity and safety than any other stakeholder.” Describing PPR’s vision of the future, Dr. Peel outlined how meaningful patient engagement will eliminate many of the complex problems caused by current patient identity systems, matching technologies, and algorithms. She also said that meaningful patient engagement means that patients can access, control, or delegate how their personal information is used and disclosed, as well as monitor all exchanges of their health data in real time.

 

Additionally, Dr. Peel discussed key elements for meaningful patient engagement based on Fair Information Practices (FIPs) and federal law. She said that all data holders and all health data aggregators should operate as HIPAA covered entities and should be known to patients. In order to provide accountability and transparency, she said that each data aggregator should provide Notice of Privacy Practices (NPPs), voluntary patient-controlled IDs, patient and physician portals, Direct Secure email between patients and physicians Blue Button Plus (BB+), and real time accounting of disclosures.

 

In her concluding remarks, Dr. Peel stated that polices and best practices should consider how future health IT systems and data exchanges will operate, and should “anticipate meaningful patient and physician engagement, lowering costs, improving data quality, integrity and patient safety.” She urged the ONC to require, promote, and incentivize the rapid adoption of technologies that meaningfully engage patients as described in her testimony.
The complete text of this testimony is here.

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

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

 

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

Surgery photo leads to privacy lawsuit against Torrance Memorial

“A doctor put stickers on a patient who was under anesthesia, and a photo was taken. The lawsuit underscores how, despite hospitals’ rules, the pervasiveness of cellphones raises concerns about privacy.”

Quotes from Dr. Peel:

“‘The idea that people are using their cellphone or even have one in the operating room is crazy,’ said Dr. Deborah Peel, founder of Patient Privacy Rights, a nonprofit advocacy group in Austin, Texas. ‘It’s a massive security risk and incredibly insensitive to patients.’”

“In similar cases elsewhere, Peel said, hospital personnel often lose their jobs. In 2010, for instance, four employees at St. Mary Medical Center in Long Beach were terminated because they used cellphones to photograph a dead emergency-room patient and shared the photos with others, according to state records.”

To view the full article, please visit: http://www.latimes.com/business/la-fi-hospital-patient-privacy-20130905,0,7915045.story

States Review Rules After Patients Identified via Health Records

To view the full article, please visit States Review Rules After Patients Identified via Health Records.

Key Quotes from the Article:

  • -”Some U.S. states are reviewing their policies around the collection and sale of health information to ensure that some patients can’t be identified in publicly available databases of hospital records.”
  • -Bloomberg News, working with Harvard University professor Latanya Sweeney, reported on June 4 that some patients of Washington hospitals could be identified by name and have their conditions and procedures exposed when a database sold by the state for $50 is combined with news articles and other public information.
  • -The state probes are focused on whether privacy standards for health information should be tightened as data-mining technologies get more sophisticated and U.S. President Barack Obama’s health-care overhaul drives rapid growth in the amount of patient data being generated and shared.
  • -Sweeney’s goal of identifying patients is to show that threats to privacy exist in datasets that are widely distributed and fall outside HIPAA’s regulations.

Hackers Sell Health Insurance Credentials, Bank Accounts, SSNs and Counterfeit Documents, for over $1,000 Per Dossier

The value of personal health information is very high inside and outside of the US healthcare system. At the same time, the US healthcare industry as a whole does a terrible job of protecting health data security. Most health data holders (hospitals and insurers) put health data security protection dead last on the list for tech upgrades.
Besides the lack of effective, comprehensive data security protections, thousands of low-level employees can snoop in millions of people’s health records in every US hospital using electronic records.

The public expects that only their doctors and staff who are part of their treatment team can access their sensitive health records, but that’s wrong. Any staff members of a hospital or employees of a health IT company who are your neighbors, relatives, or stalkers/abusers can easily snoop in your records.
In Austin, TX the two major city hospital chains each allow thousands of doctors and nurses access to millions of patient records.
All this will get much worse when every state requires our health data to be “exchanged” with thousands more strangers. The new state health information exchanges (HIEs) will make data theft, sale,  and exposure exponentially worse.
Tell every law maker you know: all HIEs should be REQUIRED by law to ask you to agree or OPT-IN before your health data can be shared or disclosed.

Today:

  • -many states do not allow you to ‘opt-out’ of HIE data sharing
  • -most states do not allow you to prevent even very sensitive health data (like psychiatric records) from being exchanged

There is no way to trust electronic health systems or HIEs unless our rights to control who can see and use our electronic health data are restored.