The Office Nurse Now Treats Diabetes, Not Headaches

In response to the escalating costs of healthcare many employers are adding on-site medical clinics to help their employees become healthier—and don’t use employees’ personal health data to penalize them or discriminate against them.

But other large employers, such as CVS, use high costs to justify replacing employees’ health insurance with health savings accounts, imposing involuntary health screenings and wellness programs, and penalizing workers who don’t respond to these simplistic solutions.

Two studies in Health Affairs show that wellness programs don’t work:

  • -“Wellness Incentives In The Workplace: Cost Savings Through Cost Shifting To Unhealthy Workers” See: http://content.healthaffairs.org/content/32/3/468.abstract
  • -“A Hospital System’s Wellness Program Linked To Health Plan Enrollment Cut Hospitalizations But Not Overall Costs”  See: http://content.healthaffairs.org/content/32/3/477.abstract
  • -Rising US healthcare costs are NOT caused by sick people who seek treatment, but by industries that decide what to charge for treatment—including the health insurance industry, the hospital industry, the drug industry, the outpatient surgical center industry, and the lobbying industry.  Industry charges have no real constraints because healthcare is not optional, sick people, employers, and/or government must pay.

Learn about why the US pays sky-high healthcare costs in Time magazine’s March 2013 issue, “Bitter Pill: Why Medical Bills Are Killing Us”

To view the full article, please visit The Office Nurse Now Treats Diabetes, Not Headaches.

Re: Heart Gadgets Test Privacy-Law Limits

In response to The Wall Street Journal article “Heart Gadgets Test Privacy-Law Limits

This story shows the ethical and legal absurdity of private corporations’ claims to own and control patient records. Greedy corporations are copying their business models from Google and Facebook: sell every piece of information about every individual to any willing buyer.

Despite patients’ strong rights to obtain copies of their entire medical records, including data from devices that monitor health status, most hospitals and electronic health systems don’t yet offer patients a way to download personal health information, which is required by HIPAA and HITECH.

EVEN MORE IMPORTANTLY patients also have very strong ethical, legal, and Constitutional rights to control the disclosure and use of personal health information.

Today’s health IT systems and data exchanges were designed to prevent patient control over personal health information. Most health IT systems have abysmal data security (millions of health data breaches and thefts) and no means for patients to control who can see, use or sell their health data.

Government and Congress have poured $29 billion in stimulus funds into defective technology systems that violate the public’s rights to privacy and control over health information in electronic systems.

Medtronic and hospitals are hiding behind illegal contracts that violate patients’ rights to access and control sensitive personal health information.

We need clear new laws to ban the sale of personal health information without informed consent and RESTORE patient control over use, disclosure, and sale of health information.

-Deborah Peel

PPR in the Wall Street Journal

The Journal Report of The Wall Street Journal featured Patient Privacy Rights’ founder in a debate about Unique Patient Identifiers (UPIs). Deborah C. Peel, MD, founder & chair of Patient Privacy Rights, opposes UPIs, pointing out there are better electronic records systems that allow patients to control data exchanges for treatment and other approved uses.

You can read both sides of the debate at this link: “Should Every Patient Have a Unique ID Number for All Medical Records?”

While voting remains open, the scores have remained fairly static over the past month showing a clear victory. Deborah Peel, MD has won the debate for Patient Privacy Rights, exposing the dangers of UPIs in electronic health record systems. If you have not already, you can still vote “No” to UPIs, and help protect patients, privacy, and progress toward patient-controlled electronic health records. If you are in the main article, voting takes place on the left side of the screen below the picture of Michael Collins. You can also use this direct link to vote after reviewing the full debate.

To dispel the myths of UPIs:

  • Trying to separate UPIs from financial records would be like trying to separate SSNs from everything they have been linked to, including medical records!
  • UPIs will give government, industry, data miners, and others greater ability to collect all health information on individuals. Imagine giving everyone a unique financial identifier that they would use for all credit cards, banks, retailers, and other financial institutions. Would you feel your money was secure?
  • A surprising amount of patients already do not trust a paper-based system, and fear for their privacy even more with expanding Health IT. Having a UPI takes away the idea of patient control and consent, creating one very easy and obvious way for anyone with the means necessary to look up a patient’s full health record. Patients will only accept a system they can control.

We do our work to improve health care by protecting patient privacy. We encourage you to protect your own privacy rights by voting now.

Re: Google Defends Way It Gets Phone Data

Mobile devices will be the future of healthcare and health IT. Today in parts of the world too poor to afford enterprise systems, “mHealth” is now the way healthcare is delivered.

Please see the recent article in the Wall Street Journal: Google Defends Way It Gets Phone Data

This story should serve as a warning to patients: If your doctor uses an iPad, iPhone, or Android to access your electronic health information, Google and Apple may be collecting, using, or selling it.

  • QUOTE: “Amid rising scrutiny of their practices, Google Inc. defended the way it collects location data from Android phones, while Apple Inc. remained silent for a third day. The companies’ smartphones regularly transmit locations back to Google and Apple servers, respectively, according to data and documents analyzed by The Wall Street Journal. Research by a security analyst this week found that an Android phone collected location data every few seconds and sent it to Google several times an hour. Apple disclosed in a letter to Congress last year that its phones “intermittently” collect location data, and the company receives it twice a day.”

Do Androids, iPhones and iPads send health records back to Google and Apple every few seconds the same way they send GPS data? Right now, health data on mobile devices typically isn’t even encrypted.

Do Google and Apple collect and store health data for months, like they do with location data?

Do Google and Apple “anonymize” health data the same way they “anonymize” your cell phone: by assigning a unique number that is directly traceable back to you?

The point is, whatever Apple and Google can do with GPS data, they can do with health data on mobile devices.

Re: “Web’s Hot New Commodity: Privacy”

In response to the WSJ article: Web’s Hot New Commodity: Privacy

Finally the market for digital privacy is being built! This reflects GROWING public awareness of data theft and misuse.

Yes, PPR will continue to call it “theft”. Data mining corporations are like squatters who sneak onto property and then claim it because the owners didn’t know what they were doing. Data miners are thieves because they know VERY well how hard it is for people to discover what they are doing, and further, they know that there is no way anyone can stop them from stealing personal information. Watch — as ways to protect personal data are developed and laws are proposed to prohibit what they do, they will try to make sure their illegal and unethical practices are “grandfathered in.” These practices must be outlawed in the Digital Age if Americans are to retain the most precious right in a Democracy: the right of law-abiding citizens to be “let alone.”

We must fight back and press Congress to outlaw all data theft and corporate contracts that require giving up control of personal information. We must press Congress to ENFORCE the ban on the sale of health data without consent.

It is now clear to entrepreneurs that people are starting to view personal information as an EXTREMELY valuable asset that many want to have treated as personal property. The fact that the nation’s prescription records were being sold without consent is why Congress banned the sale of protected health information (PHI)—-OUR sensitive electronic health information—without consent in the stimulus bill.

There are many who fear that patients cannot meaningfully give consent to sell their health data; that they will easily sell it for next to nothing and not realize the consequences—such as job loss and generations of job and credit discrimination.

But the current situation is far worse and must be addressed: the huge health data mining industry operates in the shadows. AND we have NO WAY of identifying or preventing data mining corporations from stealing and selling our most sensitive data—from prescriptions to DNA. This secret industry is a behemoth, generating tens to hundreds of billions of dollars in annual revenue.

Letting secret, shadowy corporations continue to make billions/year selling the sensitive personal health data of every person in the U.S. is NOT a fair or sustainable solution to corporate and government data hunger. Why allow any industry built on theft? I can’t think of another legal industry built on theft.

Individuals should control PHI; morally and practically it is the only solution. But we need clear laws and boundaries in addition to individual control (consent), so that there are boundaries around exactly what data can be sold or used.

In Europe most uses of health data are flatly prohibited; in Germany there is no consent, but instead only a handful of uses of health data are permitted—the uses are tightly bounded. This is a very different approach than the US.

We ALSO need a framework of tightly bounded privacy protections for health data (in addition to informed electronic consents) that provides interactive education about consent decisions and sets defaults at the most privacy-protective level.

WSJ Exposes Web Tracking Truths

This story should prompt a flood of investigative reporting about the secret, highly lucrative data theft and mining industries. And health information is THE most valuable personal information of all.

“Consumer tracking is the foundation of an online advertising economy that racked up $23 billion in ad spending last year.”

The story shows that the data theft and data mining industries are selling real-time access to specific people—a FAR more intrusive practice than buying a location on a webpage:

“These profiles of individuals, constantly refreshed, are bought and sold on stock-market-like exchanges that have sprung up in the past 18 months.”

“Advertisers once primarily bought ads on specific Web pages—a car ad on a car site. Now, advertisers are paying a premium to follow people around the Internet, wherever they go, with highly specific marketing messages.”

And, of course, sensitive health information is being stolen too:

“On Encyclopaedia Britannica Inc.’s dictionary website Merriam-Webster.com, one tracking file from Healthline Networks Inc., an ad network, scans the page a user is viewing and targets ads related to what it sees there. So, for example, a person looking up depression-related words could see Healthline ads for depression treatments on that page—and on subsequent pages viewed on other sites.”

“Healthline says it doesn’t let advertisers track users around the Internet who have viewed sensitive topics such as HIV/AIDS, sexually transmitted diseases, eating disorders and impotence. The company does let advertisers track people with bipolar disorder, overactive bladder and anxiety, according to its marketing materials.”

Ubiquitous surveillance and data theft is used to track and discriminate against every American in real time. Ads are NOT innocuous and helpful:

“We’re driving people down different lanes of the highway,” Mr. Cheyney says.

“Some financial companies are starting to use this formula to show entirely different pages to visitors, based on assumptions about their income and education levels.”

“Life-insurance site AccuquoteLife.com, a unit of Byron Udell & Associates Inc., last month tested a system showing visitors it determined to be suburban, college-educated baby-boomers a default policy of $2 million to $3 million, says Accuquote executive Sean Cheyney. A rural, working-class senior citizen might see a default policy for $250,000, he says.”

Only exposure and public outrage over the deeply invasive secret data theft and data mining industries will shut them down. And it’s important to know that the government is one of the biggest customers of these stolen data profiles.

See the Wall Street Journal Article: The Web’s New Gold Mine: Your Secrets