An American Quilt of Privacy Laws, Incomplete

The MOST “incomplete” US privacy law is HIPAA, which eliminated Americans’ rights to control the collection, use, disclosure and sale of their health data in 2001.

The new Omnibus Privacy Rule did not fix this disaster. It made things worse by explicitly permitting health data sales for virtually any purpose without patients’ consent or knowledge. These new regulations violate Congress’ intent to ban the sale of health data in the 2009 stimulus bill.

In addition to not being able to control personal health information Americans have no ‘chain of custody’ for their health data, so there is no way to know who is using or selling our health data.

We need a data map to track all the hidden users and sellers of our personal health information, from our DNA, to our diagnoses, to our prescription records:

  • -Watch Professor Sweeney describe the Harvard Data Privacy Lab/Patient Privacy Rights research project to track hidden users of our health data at: http://patientprivacyrights.org/thedatamap/
  • -WE NEED A DATA MAP TO SHOW THE GOVERNMENT IT’S TIME TO FIX THIS PRIVACY DISASTER!

Attend or watch the next health privacy summit June 5-6 in Washington, DC to learn about these urgent health data problems and potential solutions:

Most U.S. Doctors Believe Patients Should Update Electronic Health Record, but Not Have Full Access to It, According to Accenture Eight-Country Surve

To view the full article, please visit Most U.S. Doctors Believe Patients Should Update Electronic Health Record, but Not Have Full Access to It, According to Accenture Eight-Country Survey.

According to a Harris Poll,  70% of doctors don’t “believe” patients should be able to get FULL copies of their electronic health records.

But patients have always had the right to copies of their paper medical records—it was just a hassle to get them.  HIPAA,  HITECH, and the Omnibus Privacy Rule all affirmed patients have the right to download copies of their electronic health information.

Do only 30% of doctors understand patients’ rights under the law?  MD Anderson Cancer Center has given patients FULL downloads of their electronic health records for years.

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

To view the full article, please visit Nearly Half of U.S. Adults Believe They Have Little To No Control Over Personal Info Companies Gather From Them While Online.

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.”