(NEW YORK) — Digital mental health company BetterHelp is facing multiple potential class action lawsuits over claims from patients that it shared their personal information to advertisers — including Facebook. The lawsuits came soon after BetterHelp agreed in March to pay $7.8 million over charges from the Federal Trade Commission that it revealed sensitive patient data.
“When a person struggling with mental health issues reaches out for help, they do so in a moment of vulnerability and with an expectation that professional counseling services will protect their privacy,” said Samuel Levine, director of the FTC’s Bureau of Consumer Protection, in a statement. “Instead, BetterHelp betrayed consumers’ most personal health information for profit.”
This isn’t the first time a digital mental health service — which could include apps that connect you with a therapist, chatbots, meditation apps, and others — has come under fire for privacy violations. These products market themselves as useful resources for people struggling to navigate mental health care. They’re also more accessible at times than traditional therapists and easier to use from home.
But many of these mental health tools have privacy risks that you won’t find with a traditional, in-person therapist. Mozilla’s Privacy Not Included project says that mental health apps, as a category, have some of the worst privacy protections of any apps on the market.
However, digital mental health tools might still be a good option for some people, but it’s important to check beforehand if you can trust the privacy protections offered by the service you’re using, says Dr. Rebecca Brendel, president of the American Psychiatric Association.
Here are some things to think about when you sign up.
Don’t assume your information will be private
Many digital mental health tools are not governed by the medical privacy law HIPAA. That law protects data collected by health care professionals or hospitals — but not always by apps or websites. An app could, for example, legally share the fact that you signed up for its service with third-party advertisers.
That’s why it’s so important to do your due diligence before using a service, Brendel says. “Entering into mental health treatment is something that’s deeply private and personal for so many of us. And so being sure ahead of time that you can trust that your treatment is actually private and protected is critical,” she says.
Check the privacy policy
Read the privacy policy of any mental health tool closely before you use it, Brendel says. Check if it will be sharing data and what kind of data it will be sharing. Find out if any information will be used for research — either medical research or to improve the app.
“What are some of the guarantees that are being made and what isn’t being made?” she added. Make sure you’re comfortable with the policy, and that you know your rights.
Ask questions during your first visit
People should also ask questions about privacy during their first visit with a provider through the app, Brendel says.
“Asking direct questions at the beginning of a first session is a really important way to ensure that there is integrity in the treatment, and that it protects privacy in a way that makes treatment possible and trustworthy,” she says.
That should include asking if there have been any data breaches at the company, where data is stored, and if there are any reasons to worry about data privacy.
“If there are any red flags or any concerns, it might not be the best option or it might require a little more investigation, Brendel says.
Consider using a virtual service through a hospital rather than a tech company
It can be hard to track down all the information about privacy on an app or website, Brendel notes. If you want to have a higher level of certainty, you may consider accessing a virtual mental health service that’s connected to a hospital or a health care system — rather than a startup or app-based platform.
“Think about systems that really are behind medical firewalls,” she says.
If you’re really worried about privacy, those might be able to give you more peace of mind.
“That can be very, very helpful and reassuring so that you can enter into treatment and focus on getting better and getting the help you need, rather than whether you’re going to be exposed or others are going to find out about it,” Brendel says.
If you are struggling with suicidal thoughts, substance use, or other mental health crises please call or text 988. Trained crisis counselors are available for free, 24 hours a day, seven days a week.
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