Nearly Half of U.S. Adults Believe They Have Little To No Control Over Personal Info Companies Gather From Them While Online

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No surprise, 80% of US adults do NOT want targeted ads. 24% think they have no control over information shared online.

How will US adults feel when they learn they have no control over sensitive electronic health information? Despite the new Omnibus Privacy Rule,  there is still no way we can stop our electronic health records from being disclosed or sold.  The only actions we can take are avoiding treatment altogether or seeking physicians who use paper records and paying for treatment ourselves. No one should be faced with such bad choices. There is no reason we should have to give up privacy to benefit from technology.

Today, the only way to prevent OUR health information from being disclosed or sold to hidden third parties is to avoid electronic health systems as much as possible. That puts us in a terrible situation, because technology could have been used to ensure our control over our health data. The stimulus billions can still be used to build trustworthy technology systems that ensure we control personal health information. Institutions, corporations, and government agencies should not control our records and should have to ask us for consent before using our them.

Quotes:

  • -“45% of U.S. adults feel that they have little (33%) or no (12%) control over the personal information companies gather while they are browsing the web or using online services such as photo sharing, travel, or gaming.”
  • -“many adults (24%) believe that they have little (19%) to no (5%) control over information that they intentionally share online”
  • -“one-in-five (20%) said that they only minimally understand (17%), or are totally confused (3%) when it comes to personal online protection”
  • -“When asked under what circumstances companies should be able to track individuals browsing the web or using online services, 60% say this should be allowed only after an individual specifically gives the company permission to do so.”
  • -“Just 20% of adults say that they want to receive personalized advertising based on their web browsing or online service use, while the large majority (80%) report that they did not wish to receive such ads.”

Dangers of Consumer Internet Services in Health Care

Although Internet services like Gmail, Yahoo! Mail, Hotmail and Google Calendar are familiar to patients and doctors, use of such services in health care environments creates a serious privacy risk. The U.S. Department of Health & Human Services took action earlier this year when it discovered that Phoenix Cardiac Surgery, a five-physician clinic in Arizona, was posting patient appointments on the web using Google Calendar. As a result, the appointments could be found by anyone searching the Internet. Make sure your doctors and health care providers are not using consumer Internet services such as the ones identified above to store protected health information.

Health care providers should only use cloud services that are designed to comply with HIPAA and offer a HIPAA Business Associate Agreement.

You can contact PPR if you have questions or concerns about the use of consumer Internet services by health care providers and the security of your health information.

PPR Comments on FTC Consumer Privacy Protection Report

We applaud the FTC for creating a report focused on protecting consumer privacy. The proposed framework
upholds many of the practices we believe in: informed consumer consent, privacy protection and data security,
and greater transparency.

View the FTC Staff Report: Protecting Consumer Privacy in an Era of Rapid Change

View PPR’s full comments

The Web’s New Gold Mine: Your Secrets

A Journal investigation finds that one of the fastest-growing businesses on the Internet is the business of spying on consumers. First in a series.

Hidden inside Ashley Hayes-Beaty’s computer, a tiny file helps gather personal details about her, all to be put up for sale for a tenth of a penny… One of the fastest-growing businesses on the Internet, a Wall Street Journal investigation has found, is the business of spying on Internet users…

…The Journal conducted a comprehensive study that assesses and analyzes the broad array of cookies and other surveillance technology that companies are deploying on Internet users. It reveals that the tracking of consumers has grown both far more pervasive and far more intrusive than is realized by all but a handful of people in the vanguard of the industry…

…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.

Targeted ads can get personal. Last year, Julia Preston, a 32-year-old education-software designer in Austin, Texas, researched uterine disorders online. Soon after, she started noticing fertility ads on sites she visited. She now knows she doesn’t have a disorder, but still gets the ads.

Healthcare moving to Cloud Computing

Joe Conn looks more deeply into the problems of ‘cloud’ computing for the storage, exchange, and analysis of health data. See his article in Modern Healthcare: ‘Healthcare is slow to change’ to cloud environment

Today there is not yet a trusted organization to certify the privacy of electronic health records systems, whether on servers or in clouds.

Until the privacy of health data can be assured first with trusted security certification and then with a separate stringent privacy certification (proving that patients control the use and disclosure of their sensitive records) Americans will not trust that their data is safe.

Proof that consumers control personal data in clouds will be essential for trust in health IT.

So far all we have are promises of security and privacy. We won’t trust without verification .

Who is tracking YOU?

On the Internet ALL your health searches about scary and stigmatizing illnesses, all searches or purchases of books on health, and all searches or purchases of medications and devices are tracked and sold.

It is impossible to search for health information privately via Google, etc.

Health websites take massive advantage of Americans’ powerful expectations that ALL healthcare providers put their interests and their privacy first—expectations which come from the traditional doctor-patient relationship and the ethics that have governed Medicine for 2,400 years (derived from the Hippocratic Oath).

Americans are not yet ready to believe that every aspect of healthcare in the US is profit-driven, rather than driven by the ethical codes all health professionals swear to at graduation: the promises to “do no harm” and to “guard their secrets”.

Americans are not yet ready to believe that Wall Street has taken over Medicine—and that instead of guaranteeing the strong health privacy rights Americans have under the law, Wall Street erases our rights to ensure shareholder profits.