Why “Blue Button” matters: It is the critical first step to restore your control over personal health data.
- -If we can’t get our data (via a “Blue Button”), we can’t use or control it—-much less check for errors.
- -Few of us expect or know that today our sensitive health data flows to hidden businesses and users that have nothing to do with our health or treatment—which is why we need a map of health data flows:
- -See Prof Sweeney explain this project in a brief video: http://tiny.cc/f466kw
- -Today’s electronic health system allows millions of people who work for doctors, hospitals, insurers, health technology companies, and health data clearinghouses, etc, to use, disclose and sell our health data without consent.
- -The current health technology system guarantees harms: like use of personal health data by employers and banks, ID theft and medical ID theft, and health data sales (see ABC World News story that shows the sale of diabetic patient data at: http://tiny.cc/un96kw ).
In 2001, the HIPAA Privacy Rule stated that patients should be able to download electronic copies of personal health data. Finally the federal government, through the Office of the National Coordinator for Health Information Technology (ONC), will actually require all electronic health records systems to let us do that.
- -FYI—The box to click and download personal health information is known as a “Blue Button”. Some places already let patients do this (the VA system and MD Anderson for example).
When personal control over health data is restored, we can send our records to all the right places (for treatment and research) and NOT send records to hidden users and corporations that use it now to discriminate against us for jobs or credit, for ID theft, to impersonate us and use our health insurance to obtain treatment (medical ID theft), or for insurance, Medicare, and Medicaid fraud.