Regarding the story on MathBabe.org titled Open data is not a panacea

This story is a much-needed tonic to the heavy industry and government spin promoting ONLY the benefits of “open data” without mentioning the harms.

Quotes from the story:

• When important data goes public, the edge goes to the most sophisticated data engineer, not the general public. The Goldman Sachs’s of the world will always know how to make use of “freely available to everyone” data before the average guy.
• If there’s one thing I learned working in finance, it’s not to be naive about how information will be used. You’ve got to learn to think like an asshole to really see what to worry about.
• So, if you’re giving me information on where public schools need help, I’m going to imagine using that information to cut off credit for people who live nearby. If you tell me where environmental complaints are being served, I’m going to draw a map and see where they aren’t being served so I can take my questionable business practices there.

Patient Privacy Rights’ goal is a major overhaul of U.S. health technology systems, so your health data is NOT OPEN DATA. Your health data should only be “open” and used with your knowledge and informed consent for purposes you agree with, like treatment and research. It will take a major overhaul for the public to trust health IT systems.

Why does Patient Privacy Rights advocate for personal control over health information and against “open data”? Answer:

• Every year tens of millions of American patients and members of the military refuse medical treatment or hide information because the nation’s health data is “open”. Those actions and put people’s health and lives at risk. People act knowing personal health data does not stay in doctors’ offices. See: http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf

For reasons that are NOT apparent, the healthcare industry shuns learning from computer scientists, mathematicians, and privacy experts about the harms and risks posed by today’s poorly designed “open” healthcare technology systems, the Internet, and the “surveillance economy”.

The health care industry and government shun facts like:

• Identifiable electronic health records are sold online. Watch a 3-minute ABC TV investigation.
• De-identification cannot prevent sensitive personal health information from being re-identified, used, or sold by thousands of hidden corporations and government. See: http://www.cs.utexas.edu/~shmat/shmat_cacm10.pdf
• Health technology systems have abysmal data security. See the Washington Post article Health Care Sector Vulnerable to Hackers, Researchers Say
• Health technology systems do not permit patients to control who can see or use their health data. See: http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf
• THERE IS NO MAP OF THE THOUSANDS OF HIDDEN USERS OF YOUR ELECTRONIC HEALTH INFORMATION
  • today’s health technology facilitates the use and sale of everything about your health, from your prescription records to your DNA to your diagnoses. See PPR’s article in the Wall Street Journal Your Medical Records Aren’t Secure
  • See Harvard Professor Latanya Sweeney describe why we need a data map at: http://patientprivacyrights.org/thedatamap/

YOU can help build a data map so industry and government are forced to stop pretending that the health information of every person in the US is safe, secure, and private. Donate at: http://patientprivacyrights.org/donate/