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Protect Your Medical Privacy

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Here’s all you need to know about keeping your personal health records safe.

By Jill Case

Austin’s Dr. Deborah Peel is the founder and president of the Patient Privacy Rights Foundation. In 2006, Peel also founded the Coalition for Patient Privacy. It goes without saying Peel is passionate about patients’ rights to medical privacy.
In 1977, when she began practicing psychiatry, she noticed how many of her patients were afraid they would face discrimination if information in their records about their psychiatric care weren’t kept private. This was the beginning of her interest in medical-privacy issues.
Today, the issue is far more pressing because, as Peel says, “Instead of a system where most information would be locked up in cabinets, now we’re in a system where your records are in millions of databases [that are]unknown and inaccessible to you.”

You may believe your privacy is protected by the Health Insurance Portability and Accountability Act, or HIPAA, form you routinely sign in your doctor’s office, but this isn’t true. Your medical information is available to more people and companies than you may realize. Currently, your information can be accessed by your insurance company, employers, financial institutions, government entities such as Medicare and the U.S. Department of Labor’s Workers’ Compensation division, as well as bought and sold by data brokers.

Another issue that concerns Peel is the fact that patients withhold information from their doctors to protect their privacy and prevent job and insurance discrimination based on their diagnoses, not their health or abilities. According to a large patient survey conducted in 2016, 89 percent of patients admitted to withholding information from their doctors.
“It’s incredibly ironic that the technology systems that are supposed to help doctors treat patients actually are driving people to lie or withhold information from their doctors,” Peel says.
Through her organization and her coalition, Peel is fighting for our rights to control who can see and use our health data, even though it’s a difficult battle.
“It won’t be easy, but it has to happen because the right to privacy—to choose who can know sensitive information about you—is a fundamental human and civil right to autonomy and respect, the right to freedom. Trust in doctors requires technology systems that ensure that we can decide who else can see our health data,” Peel says.
Dr. Deborah Peel’s Tips to Protect Your Medical Privacy
  1. Ask doctors if the contract(s) they have with their electronic-health-records provider allows them to sell your data. To protect the data from being sold, the doctor or practice has to cross off the option in the contract, hidden in fine print, which allows the provider to sell or share your data.
  2. Avoid free medical or health-care-related apps. “If it’s free, it means your data is being sold,” Peel says.
  3. Be aware that just because a website or app says it “complies with HIPAA,” it doesn’t mean your information is being kept completely private.
  4. Don’t post anything personal about your health on Facebook or Twitter.
  5. Consider using a private search engine like {duckduckgo.com} instead of Google or Bing, especially when you’re searching about medical conditions.
  6. Look in to using a free privacy tracker such as Privacy Badger when you use your computer or device.
  7. Avoid genetics testing such as 23andMe or labs, if possible. Almost all of these companies sell your data. It may be “anonymous,” or “de-identified,” but it can still be identified as yours, eliminating your right to medical privacy.
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