At the start of the pandemic, demand for talk therapy apps skyrocketed. Prominent players, such as BetterHelp and Talkspace, saw their downloads nearly double during the first few months of shutdown in 2020. Now lawmakers like Senator Elizabeth Warren (D-MA) are demanding details on how these companies protect the privacy of their users.
In letters to BetterHelp and Talkspace executives on Thursday, Warren — along with Sens. Cory Booker (D-NJ) and Ron Wyden (D-OR) – the mental health companies to explain how their apps collect and use data obtained from their patients. In particular, lawmakers asked for information about the apps’ relationships with online advertisers, data brokers and social media platforms such as Facebook, as well as how these relationships are disclosed to users.
Reviewing the companies’ privacy policies, the senators wrote that “unfortunately, it seems possible that the policies used by your company and similar mental health platforms allow outside Big Tech companies and data brokers, who have shown remarkably little interest in protecting vulnerable consumers and users from accessing and using highly confidential personal and medical information.”
The letter follows a report published in May by the Mozilla Foundation warning consumers that online talk therapy apps could benefit from their mental health data. While both BetterHelp and Talkspace promise not to sell a user’s medical information without their consent, the researchers determined that personal information — such as a patient’s name, phone number, and email address — can still be sold or sold by third parties. consulted for advertising and marketing purposes.
While personal information is not as sensitive as medical records, it can still reveal intimate insights into a user’s life. For example, Jezebel reported in 2020 that BetterHelp shared the metadata of messages between a patient and therapist with Facebook. The data does not include the content of these messages, but it can point out to online marketers how often and where a user might be using the app.
“While you claim that this data is anonymized, it may still provide important and identifying information to third parties,” the senators wrote, citing a 2019 MIT Technology Review exploring how multiple pieces of anonymized data can be used to construct individual user identities.
Warren’s letter comes amid wider push to regulate data sales in the US. The House Committee on Energy and Commerce plans to flag sweeping privacy legislation on Thursday. It is the closest legislator to a deal in recent years. Last week, Warren introduced her own measure that would ban the sale of location and sensitive health data as the Supreme Court is about to roll back Roe v. Wade†
While the pandemic played a major role in popularizing therapy apps, years earlier the companies also paid popular influencers such as Shane Dawson and Philip DeFranco to advertise their apps on social media. That ad campaign sparked controversy in 2018 after fans accused YouTubers of taking advantage of their audiences’ mental health concerns with apps accused of hiring unqualified therapists, as reported by The Atlantic Ocean†