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The BetterHelp platform connects patients with counselors and therapists online. It’s one of a vast number of startups and services using live chat and video conferencing to make finding and working with doctors and specialists easier and more accessible than ever before. It’s a sector that particularly exploded, for obvious reasons, during the pandemic and lockdown. But long before that – in 2015 – BetterHelp was already popular enough to get acquired by virtual healthcare giant Teladoc.
The company has now come under fire for improperly sharing its customers sensitive personal data with outside platforms, including Facebook, Snapchat, Criteo, and Pinterest. This week, the Federal Trade Commission (FTC) banned the company from all such activity moving forward, fined them $7.8 million, and demanded changes in how BetterHelp handles customer data.
The charges themselves are fairly egregious
The FTC alleges that BetterHelp provided its users’ email addresses, IP addresses and even responses to health questionnaires to third-party companies, in an effort to help them more effectively target advertising. Though it’s unclear whether there was a specific quid pro quo – that is, whether these companies were paying BetterHelp for the data – or there was some other kind of arrangement remains unclear.
As if that weren’t bad enough, BetterHelp then purposefully deceived its users about the nature of its data handling practices. According to the FTC’s complaint, the company’s guides and FAQs repeatedly assured users during the sign-up process that it would not disclose their personal health data. After a 2020 report in Jezebel raised red flags about how online health services, including BetterHelp, handled sensitive user data, the FTC charges executives provided their customer service team with misleading scripts, assuring users that their private information was indeed safe.
Then, just last June, a group of Democratic Senators raised alarm bells about the data collection practices of talk therapy apps, sending open letters to BetterHelp and Talkspace executives specifically to request information about their relationships with online advertisers and social media platforms. They were, apparently, ignored. The BetterHelp website also features a HIPAA compliance seal even though no government agency has actually reviewed the company’s practices to determine if they meet HIPAA requirements.
In addition to the money, the FTC made a number of specific demands of BetterHelp. They’re required to immediately stop sharing any individually identifiable information about their customers to third parties, to stop misrepresenting their data collection practices, to alert existing customers about whether or not their info has been shared, to obtain affirmative express consent before sharing any other information, and to create a “comprehensive privacy program” with oversight from an independent third party.
BetterHelp’s team has yet to address the allegations publicly, except for a statement on their website calling their practices “industry-standard” and suggesting that the FTC is using them as an exemplar to “set new precedents around consumer marketing.” The company also stressed that it has never shared its members’ names or clinical data from their therapy sessions. Nonetheless, they have agreed to fully comply with the new requirements.
More questions arise about some of BetterHelp’s practices
Recent reports from Vice and Newsweek note that many BetterHelp customers have been complaining about the treatment they received on social media services like TikTok, with some of the discussions even going viral.
Most of the issues come down to a lack of professionalism; one young woman complained about her assigned therapist taking a personal phone call in the middle of her session, while others cite a lack of interest or engagement from their providers. Other allegations have gone much further. A Miami woman going by “Kat” told Vice that her BetterHelp therapist “flipped” on her and insisted that she accept her boyfriend’s suggestion that they enter an “open relationship.”
Another patient suffering from Complex Post-Traumatic Stress Disorder (CPTSD) alleged that she was “re-traumatized” by her BetterHelp therapist, and may never again seek mental health treatment. In December of 2022, TheWall Street Journal spoke with a 22-year-old gay patient whose BetterHelp therapist advised him to enter conversion therapy as a strategy for reuniting with his family.
These complaints may have made headlines and trended on social media, but they haven’t actually slowed down BetterHelp in any significant way. The company raked in over $1 billion in revenue from more than 1 million patients in 2022, a $300 million increase over the year before. Currently, 25,000 therapists are featured on the platform, which hosted 50 million interactions last year alone.
How this scandal affects the future of virtual healthcare
There’s obviously a very real need for the kind of service BetterHelp and other virtual healthcare services provide. The question then becomes whether or not the companies that currently exist in the space can be trusted with sensitive medical information, and if and how they can be compelled to protect the privacy of their own users. Clearly, a service making $1 billion in a year can afford to pay a $7.8 million fine.
As well, BetterHelp’s not the only problematic company in this space. The FTC’s efforts against the company are part of a far-reaching campaign to address the way “data brokers” trade Americans’ mental health data for profit. Last month, they also fined the online pharmacy and telehealth provider GoodRX $1.5 million for sharing consumer health data with Google and Facebook; like BetterHelp, that company also paid the money without actually admitting to any wrongdoing.
In 2022, 28 out of the 32 mental health apps reviewed by Mozilla shared their users’ personal information with third-party companies. It seems obvious that, if we want to keep using these kinds of services, Americans will need to somehow force them to maintain some basic level of discretion.