Nowhere are the stakes as high as when it comes to that most intimate of data: your medical records. Nearly all U.S. (and Canadian) medical records are compiled by the Medical Information Bureau (MIB) into a single database. An estimated 15 million Americans and Canadians are on file in a database compiled by more than 750 insurance companies. The MIB is a consortium of insurance companies that maintains millions of records taken from insurance applications, doctors and hospitals. When you apply for a health insurance policy, insurers dive into MIB's computers for information about pre-existing health conditions that might affect their decision to issue a policy to you.
Imagine that you have a non-communicable disease but find that, all of a sudden, your coworkers will not work with you. They won't tell you why. Or that a rumor causes your health insurer to cancel your policy. Or that you are fired - or not hired - for a job you deserve because someone took an unauthorized peek at your medical history and blabbed. You will probably never know the real reason you were blacklisted.
In an effort to protect your medical records in 2001, the Clinton Administration established the first-ever legal protections for certain kinds of health-related information. In April 2003, the Health Insurance Portability and Accountability Act (HIPAA) changed the regulations to ease mandatory consent requirements for doctors to disclose patients' medical information. HIPPA applies to all health care providers, health plans and health care clearinghouses, such as medical billing companies, that make certain electronic transactions.
This law's original purpose, was to prevent unauthorized sharing of personal health information with marketing firms, life insurers and other businesses. Among other things, the law requires written privacy procedures, designation of a privacy officer, employee training and to provide patients with a written notice of their privacy rights. Patients must sign an authorization before information is released for purposes not related to treatment, payment or health care operations. The law has instigated some unintended consequences, causing mounds of unnecessary paperwork for practitioners and additional stress for families with hospitalized loved ones.
Compliance across the spectrum has been inconsistent. One example of a re-occurring problem is about a man who suffered a heart attack at home and was taken by ambulance to the hospital. When his loved ones arrived at the emergency room, they learned he would been diverted to another hospital, but the nurses would not tell them which one. In another case, adult children called long-distance to check on their parents, but hospitals were reluctant to release information because they could not be sure of their identities.
Whom is covered by the law is also a contentious issue. The law does not guard the privacy of Internet users when they are doing the most common health actions on the Internet. The law only applies to websites that are run by health care providers such as a hospitals or doctor's offices; or a health insurance plans such as Aetna U.S. Healthcare or Kaiser Permanente; or a healthcare clearinghouses like WebMD that process health insurance claims information. A study by the Pew Internet & American Life Project found that the vast majority of health websites are not operated by such firms. That means there still are no federal protections for those who use them.
Many people who develop illnesses use the discussion groups, chat rooms, and web forums to find others who have the same illness as a support group or to find out useful information about how to treat or deal with the illness. Remember these are public bulletin boards. So there is no guarantee that information you disclose in any of these forums is confidential. The best way to protect yourself is to always use a pseudonym and a non name-specific email address and to avoid registering your real name on websites.
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