Resolution of Disapproval in Supreme Court Decision in Sorrell v. IMS Health Case

Lawmaker, author of health privacy protections in economic recovery act, declares privacy rights of doctors, patients should trump commercial interests

WASHINGTON, D.C. – On Friday July 8, 2011, Congressman Edward J. Markey (D-Mass.), co-chairman of the Congressional Bi-Partisan Privacy Caucus and senior member of the House Energy and Commerce Committee, introduced H.Res. 343, a resolution expressing disapproval of the recent Supreme Court decision in Sorrell v. IMS Health. In its decision, the Court struck down a Vermont state law that banned the sale of doctors’ drug prescriptions records if the records are used for commercial purposes without the doctors’ permission.

Rep. Markey’s resolution states that the Court erred in applying free speech protections to a Vermont law that lawfully regulated a purely commercial interest. Before the Vermont law was enacted, data-mining companies would purchase information about doctors’ prescription drug information from pharmacies and then resell the data to pharmaceutical companies. The pharmaceutical companies could use the information – without the doctors’ consent – for the commercial purpose of targeting their sales messages and marketing more expensive, brand-name drugs to physicians.

“In this case, the Supreme Court tipped the scales of justice in favor of big drug companies at the expense of patients and their doctors,” said Rep. Markey. “The privacy of the doctor-patient relationship should outweigh the ability of pharmaceutical companies to mine data simply so they can market expensive drugs to providers and reap huge profits. States should be able to regulate pharmaceutical companies in a way that protects the privacy of their residents and prevents pharmaceutical companies from having undue influence on doctors’ prescribing habits.”

Dissenting in the Supreme Court’s 6-3 decision, Justice Stephen Breyer wrote that the Vermont state law in question “adversely affects expression in one, and only one way. It deprives pharmaceutical and data-mining companies of data…that could help pharmaceutical companies create better sales messages.” The dissent, which was joined by Justices Ruth Bader Ginsburg and Elena Kagan, stated that the Vermont statute is a “lawful governmental effort to regulate a commercial enterprise…The far stricter, specially ‘heightened’ First Amendment standards that the majority would apply to this instance of commercial regulation are out of place here.”

Dr. Deborah Peel, a national health privacy expert and founder of the non-profit Patient Privacy Rights, praised the Markey resolution. “With a Supreme Court that stands up for the interests of pharmaceutical companies, it’s reassuring to know that Congressman Markey is looking out for patients and doctors who value the privacy of their prescription drug information.”

Text of the resolution can be found HERE.

Re: Web site helps people profit from information collected about them

See the new story in the Washington Post by Thomas Heath: Web site helps people profit from information collected about them

A new technology called “Personal” allows people to control some their personal information and monetize it themselves.   A technology like “Personal” could give us control over our personal health data, which is constantly being “monetized” today without our consent and sold for uses that have nothing to do with improving our health.

“Personal” is betting that data we enter about ourselves and our product preferences will be very attractive to corporations that want to know us and/or sell to us. Today corporations use and sell whatever information they can scavenge about us online.

Similarly, sensitive health data that we control and release will be FAR more valuable to our doctors, researchers, and marketers because we have checked it for accuracy and completeness.  No one has quite the same motivation to ensure the accuracy and completeness of our health data as we do: it’s literally a matter of life and death.

Here is the business model “Personal” uses:

  • “if you mon­etize your data (Personal doesn’t like the word “sell”) through commercial activities with companies that want to buy it. Personal wants to be your “agent,” collecting a 10 percent fee on the compensation you receive each time you monetize your data.
  • EXAMPLE:  “So if I were a user of Personal, I could fill in the data fields in my “gem” on travel preferences for my trip to Stockholm this summer. I would release the information to Stockholm hotels, which could compete for my business based on my preferences for a clubby hotel bar, delicious breakfasts, a king-size bed and access to running trails. If a hotel gave me a discount or cash payment, Personal would collect a 10 percent fee.”

JUST LIKE in today’s electronic healthcare systems where we are powerless to stop the theft and sale of health data, “Personal can’t stop companies and others from scavenging data by tracking your online activities. It does, however, “give you the tools to monetize your data, but only if you want to,” Green said.”

“Personal’s” model of individual control over personal data could work very well with sensitive health data—–giving us choices, like NOT selling anything at all. But, Granny could sell some of her health information to afford her medications.  Or Dad could sell some of his data for research to afford treatment.

At a time when healthcare is not affordable for so many people, why should hospitals, pharmacies, doctors, labs, health IT and HIE vendors, prescription data mining corporations, insurers, transcription companies, data warehouses, states like Texas, digital devices, cell phone corporations and innumerable others be able to sell and “monetize” health data, instead of patients?

Many are concerned that if patients can monetize their data, poor and vulnerable people will give up privacy for money and the rich won’t need to. But how moral is the current system where corporations secretly profit from health information about the poor and rich alike?

To date, federal and state laws designed to prevent the sale of our protected health information have not been implemented or enforced. Congress and the states intended to stop the sales of health data without consent, but industry lobbies have effectively prevented the laws from working.

When was the last time your pharmacy asked if they could sell your prescription details? All US pharmacies sell everyone’s prescription records every night. See: http://patientprivacyrights.org/consumers/campaign-for-perscription-privacy/

Re: Governor Scott Outlines Prescription Drug Problem In Florida

Florida dispenses MORE oxycodone than the whole rest of the nation!

See Gov Scott’s testimony before Congress here.

Bravo to Governor Scott for not being bullied into building an expensive, large data base of extremely sensitive, hard-to-protect personal health information, when the REAL solution is simple and obvious: stop the 98 Florida doctors among the 100 top dispensers of Oxycodone in the nation from prescribing. No wonder Florida is the “Oxy Express”.

It’s actually stunning that no one thought of this before: go after the bad doctors.

Taking away the prescribing licenses of doctors committing unethical and criminal acts is not hard or costly—and it has the great advantage of not exposing prescriptions in a state-run data base of patients who are legitimately taking pain meds to insider theft or hacking.

Quotes from the story

· more Oxycodone is dispensed in the state of Florida than in the rest of the nation

· 98 of the top 100 doctors dispensing Oxycodone nationally are in Florida – concentrated in the Miami, Tampa, and Orlando regions.

· Scott said, “we are moving legislation to limit how doctors dispense narcotics and making sure doctors divest from pharmacies.”

· Scott also said, “The role of doctors who have forsaken their commitment to people’s health in exchange for the quick buck of unethical and criminal dispensing cannot be overstated and absolutely must be put to an end.”

See more on his testimony here.

Data-mining: Australia Just Calls It Something Else

In Australia, the data mining industry pays doctors to sell patients’ prescription records. In the US they pay pharmacies, hospitals, and PBMs. See Article.

A complaint to the Australian Privacy Commissioner was dismissed because the data miners claimed that patients and doctors were “de-identified”. But it is very difficult to fully de-identify personal health data so that re-identification is impossible. If true, the industry should have offered proof that their methods actually work and that the data cannot be re-identified.

As in the US, the theft and sale of personal prescription records is rationalized with claims that it can be used to “provide valuable insight into healthcare trends– including the spread of infectious diseases”. The word that describes using data to provide “valuable insights” is “research”. It happens to be both illegal and unethical to do research without informed consent.