Your Mental Health Data Is For Sale Says New Report — The Fappening Of Mental Health — How To Protect Yourself

“While many mHealth apps have expanded access to care, particularly for vulnerable populations, these apps have also sold sensitive mental health information for use by other companies and entities,” the report reads. “Since most mHealth apps are not covered by the Health Insurance Portability and Accountability Act (HIPAA), which only applies to certain covered health entities, many private companies operating mHealth apps are not legally obligated by HIPAA to keep their users’ data confidential.

“Companies that produce and maintain other technologies that might collect health data, such as wearables or social media platforms, are also often not covered by HIPAA. Consequently, mHealth apps, wearables, social media platforms, and many other technology companies (collectively referred to as ’emerging mHealth technologies’) can most often legally share, license, and sell users’ health data (in addition to other data) to third parties without users’ knowledge or consent.”

After contacting data brokers to initiate the sales inquiry processes, researchers examined the privacy policies of the 10 most engaged data brokers. When all was said and done, the results were very concerning.

“Some data brokers are marketing highly sensitive data on individuals’ mental health conditions on the open market, with seemingly minimal vetting of customers and seemingly few controls on the use of purchased data,” the report reads. “This research highlights a largely unregulated data brokerage ecosystem that sells sensitive mental health data in large quantities, with either vague or entirely nonexistent privacy protections.”

The report concludes that HIPAA should be extended or a federal privacy law must be created to protect vulnerable populations and Americans’ privacy. But, in the meantime, we have some suggestions for you.

How To Protect Your Health Info

HIPAA, or the The Health Insurance Portability and Accountability Act of 1996, protects your health information when it is held by most health care providers, health insurers and other organizations operating on behalf of your health care provider or health plan.

But it’s important to remember that you can protect yourself too. The Office of the National Coordinator for Health Information Technology says if you have health information on your personal computer or mobile device, exchange emails about your health info or participate in health-related online communities, you should know the following:

• HIPAA Privacy and Security Rules do not apply if you share your health information with an organization that is not covered by HIPAA. For example, if you post that information online yourself — such as on a message board about a health condition, it is not protected by HIPAA. Never post anything online that you don’t want made public.
• Your doctor uses tools to protect and secure your health information at his or her office. You can do the same at home. If you have health information stored on your home computer or mobile device — or if you discuss your health information over email — simple tools like passwords can help keep your health information secure if your computer is lost or stolen.
• There are medical identity thieves that could try to use your personal and health insurance information to get medical treatment, prescription drugs or surgery. The best way to protect yourself against this possibility is to make sure you verify the source before sharing your personal or medical information. Safeguard your medical and health insurance information and shred any insurance forms, prescriptions or physician statements. For more information about medical identity theft, visit the Federal Trade Commission (FTC) website to learn how to protect yourself.
• If you store your health information online, you should be sure to read the website’s privacy policy and terms of service. For practical additional tips to help you protect and secure your health information online, visit: OnGuardOnline.gov.

Looking at ways to protect your privacy online and when you use an app, the The Office of the National Coordinator for Health Information Technology recommends the following:

• Opt out of targeted ads, if possible. A company’s privacy notice or policy can be hard to read, but it should spell out what the company will or won’t do with your information: Will it share your information with other companies? For targeted advertising? Can you control whether ads will be targeted to you based on your app usage and browsing activity? The Digital Advertising Alliance and the Network Advertising Initiative also have free opt-out tools. If you choose to opt out, do so on each device and browser you use.
• Check if you can customize your privacy settings. Can you adjust the app’s permissions so it doesn’t have access to information it doesn’t need? Does the app track your device’s location? If the app doesn’t need the info, especially your location, turn it off. If the app does need it, consider limiting access to only when the app is in use.
• Find out if you have the right to tell the company to delete your data. Some state laws give you that right. See the U.S. State Privacy Legislation Tracker from the International Association of Privacy Professionals to learn more.

How To Take Care Of Your Mental Health

Now that we’ve talked about how to protect your health information, let’s dive deeper into the topic of mental health. Taking care of your mental health is of the utmost importance, but it’s not always easy. One place to start is to be aware of the following signs that there may be something affecting your mind:

• A change in eating or sleeping habits
• Losing interest in people or usual activities
• Experiencing little or no energy
• Numb and/or hopeless feelings
• Turning to drinking or drugs more than usual
• Non-typical angry, upset or on-edge feelings
• Yelling/fighting with loved ones
• Experiencing mood swings
• Intrusive thoughts
• Trouble getting through daily tasks

Symptoms of a mental health disease or issue can vary from person to person, so it’s always crucial to promptly speak with a healthcare provider if you’re experiencing any changes to your physical or mental health. There are many treatment options available and many different healthy ways to help you cope.

How to Be Realistically Optimistic: Coping With Mental Health Long-Term

One such option is therapy. In a previous conversation with SurvivorNet, ovarian cancer survivor Ni Guttenfelder talked about how finding the right counselor helped her process the feelings that came after her diagnosis.

“One of the things that my counselor has taught me from the very beginning that has helped me is the concept of acceptance,” she says. “Acceptance is a process. It’s like downloading a computer file in increments. Visualizing it in that way has really helped me.”

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In addition to therapy, meditation and practicing mindfulness can also be used to cope with a mental health struggle. Dr. Deepak Chopra, acclaimed author and pioneer of mindfulness movement, spoke with SurvivorNet about how asking yourself who you really are is the first step down the path to practicing mindfulness.

“If we can combine our actions in the world with reflective self inquiry, love and compassion, and a state of secure, stable, ornamental, peaceful being without the addictions that humans have, then we can begin our journey of healing,” Dr. Chopra explained.

Dr. Brian Berman, director of the Center for Integrative Medicine at University of Maryland, takes SurvivorNet through a guided meditation

Medicating certainly isn’t the right choice for everyone when it comes to addressing a mental health issue, but there should be no shame in turning to medication when you need it. That being said, it can be hard to find the right one. These days, however, there is a form of genetic testing that has shown the ability to match people with the best medication for mental health treatment.

We’ve seen genetic testing used for treatment plans for other diseases, such as certain types of cancer, but the ability to use it to help people who are suffering from things like anxiety and depression is relatively new.

How Can Genetic Testing Help Determine the Right Form of Mental Health Treatment?

“Doing the genetic testing has absolutely transformed the landscape of psycho-pharmacology,” psychiatrist Dr. Lori Plutchik told SurvivorNet. “It’s something that I highly recommend for anybody that is taking medication, whether they are being treated for cancer, or not … I recommend it for children who are taking medication. I recommend it for elderly people. Anybody who is taking medication, I think, can greatly benefit from genetic testing.”

Genetic testing can give a profile of how a person is likely to respond to different types of psychiatric medications, Dr. Plutchik explained. Testing is also available to create a profile of how patients will likely respond to different sorts of pain medications, which can be really beneficial for those going through some other sort of health issue.

Genetic testing “gives me information about which medications are likely to work without having problematic side effects. It also gives information about interactions between any of the psych medications that we choose,” and other medications a patient may be taking, Dr. Plutchik said.

The genetic test that Dr. Plutchik was discussing, Genomind, looks at multiple factors before determining which treatment is likely to have successful results and minimal side-effects. The test examines certain genes that are associated with responses to medications commonly prescribed for mental health issues and then looks into the patient’s ability to metabolize medication.

If you’re considering going on medication for mental health treatment, consider asking your doctor if genetic testing might be helpful for you.

Contributing: Dr. Lori Plutchik

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