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.’”

Jailed Man Narrowly Escapes Fatal Error in EHR

To view the full article, please visit Nextgov.com: Jailed Man Narrowly Escapes Fatal Error in EHR

Problems with EHRs don’t happen only in jails—and many hospitals and clinics that  use EHR are prohibited from criticizing the products in public; ie many health technology vendors have ‘gag’ clauses in their contracts with users.  EHRs like this one can endanger patients’ lives and/or can be very difficult to use (many are NOT designed by clinicians who actually need to use them, can be very time consuming to use, make it hard to find needed information, etc, etc).

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: Data Privacy, Put to the Test

Great story in the NY Times about the fact that patients’ rights to health privacy are being violated by the sale of prescription records. It quotes three of the big stars who will be speaking June 13th at the First Summit on the Future of Health Privacy: Chris Calabrese, Latanya Sweeney, and Lee Tien. See www.healthprivacysummit.org.

See the full story: Data Privacy, Put to the Test

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.

Hackers Want Millions For Data on Prescriptions

The FBI and Virginia State Police are searching for hackers who demanded that the state pay them a $10 million ransom by Thursday for the return of millions of personal pharmaceutical records they say they stole from the state’s prescription drug database.

The hackers claim to have accessed 8 million patient records and 35 million prescriptions collected by the Prescription Monitoring Program.

“This was an intentional criminal act against the commonwealth by somebody who was trying to harm others,” Gov. Timothy M. Kaine (D) said. “There are breaches that happen by accident or glitches that you try to work out. It’s difficult to foil every criminal that may want to do something against you.”

Although the hackers had threatened to sell the data if they did not receive payment by Thursday, the deadline passed with no immediate sign that they followed through.

Connecting The Medical Dots

Congress is considering adding money for health information technology to January’s stimulus package.

Doing so could spur a critical mass of the nation’s doctors to finally enter the information age, but unless the funds are tied to standards for the interoperability of health IT systems, the expenditure could do more harm than good.

Before lawmakers act, they need to think: If stimulus money supports a proliferation of systems that can’t exchange information, we will only be replacing paper-based silos of medical information with more expensive, computer-based silos that are barely more useful. Critical information will remain trapped in proprietary systems, unable to get to where it’s needed.

Health IT systems produce value when they are interoperable. When they’re not, doctors who invest in electronic health records cannot share information with each other or add lab results to your file or send electronic prescriptions to your pharmacist. They would have to use handwritten prescriptions and paper files in addition to their electronic files.

Unions Say CVS Pushed Costly Drug to Doctors

A group of labor unions is launching a campaign that accuses CVS Caremark Corp. of violating patient privacy and improperly pushing doctors to prescribe a costly prescription drug.

Change to Win, a group of unions that represents about six million workers, said CVS’s pharmacy benefits management business has been urging doctors via a letter to add Merck & Co. diabetes drug Januvia to specific patients’ treatments. The letter, obtained by the union group, said CVS identified the diabetes patients through a review of prescription-drug claims processed by its Caremark unit.

A line at the bottom of the letter says Merck paid for the mailing. Neither Merck nor CVS would say how much Merck paid, and the drug maker also declined to say whether the mailing boosted Januvia sales.

CMS, e-health group push e-Rx with meeting, guide

The e-Health Initiative released its A Clinician’s Guide to Electronic Prescribing at a Boston e-prescribing conference sponsored by the CMS.
The guide, clearly aimed at boosting the use of e-prescribing, was introduced Tuesday at the daylong conference, which was promoted by the CMS with full-page ads in the New York Times and Wall Street Journal. The guide differentiates between “stand-alone” e-prescribing software systems, that can either be purchased and loaded onto and then run off of a prescriber’s own computer system, and Internet-based systems where the software is accessed through a Web browser and the service is paid for through monthly fees.