Resource Center / Privacy / The privacy risks of sharing health info online

The privacy risks of sharing health info online

 | Updated
by Jennifer Bridges  @JenBridgesRD

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When Rebecca Matos learned she had breast cancer, she felt isolated because the subject upset her loved ones and they tended to avoid discussing it. For years, she had no outlet to vent her feelings until she decided to publish a blog. “Blogging and reaching out allowed me to see mortality as more normal. It makes me feel like I’m not the only person going through this.”

And Rebecca isn’t alone in looking to connect with others online. According to a study by the Pew Research Center, nearly 1 in 5 individuals living with a health concern are searching for a network of support on social media and other online communities. However, while sharing your private health information with others in this way can help lift the burden of living with a serious illness, it can also pose the following serious risks to your online privacy. 

Risk 1: Medical identity theft 

Putting your medical history online makes it easier for scammers to commit medical identity theft, which involves someone else submitting fraudulent insurance claims or receiving prescriptions, medical devices, or medical care in your name. 

“The more information available to a public audience—such as your address, employment and medical history—the higher risk you face of medical identity theft.”—Michael Kaiser, executive director of the National Cyber Security Alliance

Although not as well-known as regular identity theft, medical identity theft is a growing problem that can often have a much worse impact on its victims. For example:

  • It can be dangerous to your health: Because the scammer often enters his or her own medical history into your records as part of the fraud, medical identity theft can lead to treatment delays, and incorrect diagnoses and prescriptions. This means that the imposter’s health problems could impact your ability to obtain medical treatment and insurance coverage. Further, it could influence the treatment decisions that doctors make about you in the future.
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  • It can cost you more: Unlike credit card theft, in which your liability for fraudulent charges tops out at $50, there are zero financial liability limitations if someone steals your medical identity. In fact, a Ponemon Institute survey of victims of medical ID theft revealed that those who lost money in this type of fraud spent an average of $13,500 in legal and medical fees to fix the problem.
  • It’s much harder to repair the damage: According to a World Privacy Forum report, many victims spend years dealing with aggressive medical debt collection agencies—not to mention a badly damaged credit rating. Some victims have also undergone criminal prosecution because a criminal used their medical identity to stockpile prescription drugs.

If you suspect that someone is using your medical identification, you need to file a report with the Federal Trade Commission (FTC). The FTC will help you create and implement a plan of action to help you recover from this situation.

Risk 2: Career damage

If a current or potential employer discovers that you have a serious illness—especially if it’s one that has any stigma attached to it—that employer may not hire you or give you the promotion you asked for because they aren’t willing to invest time and money in an employee who might not stay in the job long-term or whose health condition might affect his or her performance.

And the odds are good that hiring managers will find your posts. In fact, a 2017 CareerBuilder study showed that 70% of employers routinely viewed applicants’ social media profiles and 69% performed online searches for applicants’ names during the applicant screening process. 

“If you’re in the wake of applying to new jobs, it may not be the right time to post openly about your diagnosis if you’re not comfortable with employers knowing.”—Lucia Savage, chief privacy officer at the office of the National Coordinator for Health Information Technology

While there are laws and rules in place to protect employees and job seekers from this kind of discrimination, it’s easier to just keep the information private until after you have secured your new job or promotion. 

Risk 3: Limited financial options

Sharing personal information related to an illness or a medical condition could lead business associates or financial institutions to avoid doing business with you, thus limiting your financial options. Even though there are regulations that make this behavior illegal, it still takes place.

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Recently, Westchester Residential Opportunities, Inc., a nonprofit affordable housing organization, studied fair lending practices in several New York counties and discovered a pattern of discrimination against pregnant women by mortgage lenders. In particular, the financial institutions denied or delayed loans to pregnant women due to the assumption that the women wouldn’t return to their jobs after having the baby. The study revealed an astonishing rate of impropriety, with 26 out of the 30 cases investigated violating fair lending rules.

As such, it’s safer to avoid public posts about your new bundle of joy and keep any news about your pregnancy tightly contained to your private network of close friends.

Risk 4: Targeting by advertisers

Sharing your personal health information on online forums or writing about your condition on medical-related websites makes you a target for advertisers. These websites, like most, use cookies to collect data about you. While these tracking tools help personalize your website experience, they also enable advertisers to build detailed online profiles about you and the things you click on, which they then use to direct advertising to you. 

On Cancer.org, for example, there are hundreds of digital marketing companies tracking your movements and potentially selling your data to the highest bidder. If one of these companies sold your personal data to dozens of pharmaceutical companies, you could be subjected to a barrage of online ads, emails, phone calls, and other intrusive marketing efforts. 

Risk 5: Higher healthcare costs 

Are you female and have recently changed your name? You might have just gotten married and may soon have an expensive pregnancy. Are you posting about your mom’s breast cancer diagnosis? You are at higher risk for getting the disease yourself. 

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Thanks to the enormous market for personal data, health insurance companies now have access to tens of billions of online records containing detailed information about every aspect of people’s lives, including their medical diagnoses, race, marital status, education level, TV habits, property records, and net worth. And they are using this information to predict the health insurance costs of potential customers—which enables them to find ways to avoid losing money on expensive customers. This has the potential to affect how much you must pay for a policy or the scope of coverage you can obtain.

Risk 6: Termination of disability coverage

Insurance companies are continuously monitoring your online activity as part of their risk assessment process. This means that what you do and say online can influence whether you receive your disability benefits, even if you’ve already been approved for coverage.

In one example, IMB technician Nathalie Blanchard took a medical leave for depression and began receiving monthly disability checks from her insurance company. However, a year later, the checks suddenly stopped arriving. Apparently, the insurance company had discovered pictures of her laughing on a beach (which she visited per her doctor’s orders to “get away and have some fun”) and drinking in a pub on her private Facebook profile. Interpreting these images as proof that she wasn’t, in fact, too depressed to return to her job, the company terminated her benefits.

So, if you are receiving disability benefits, it’s probably not a good idea to post things like “I’ve never felt better in my life!” These explicit references to your good health can end up costing you your coverage.

For more information

For additional information about threats to your personal privacy and the best ways to manage them, see the following articles in our Resource Center:

We are also happy to offer free consultations 24/7 to discuss your unique privacy concerns.