June 24, 2022

Wyden, Colleagues Call on Mental Health Apps to Provide Answers on Patient Data Privacy and Sharing Practices

Mental health apps reportedly collect, mine, and disseminate private client information to big tech companies and data brokers

Washington, D.C. – U.S. Senator Ron Wyden this week pressed two leading mental health companies over the use of patients’ personal health data, following reports that mental health apps are collecting, mining, and disseminating private client information to third parties, including data brokers and Big Tech companies like Google and Facebook. 

“We have long been concerned about the misuse of personal data by Big Tech companies and unscrupulous data brokers, especially for the purpose of microtargeting vulnerable populations,” Wyden and colleagues wrote in their letter to BetterHelp and Talkspace. “Unfortunately, it appears possible that the policies used by your company and similar mental health platforms allow third-party Big Tech firms and data brokers, who have shown remarkably little interest in protecting vulnerable consumers and users, to access and use highly confidential personal and medical information.”

Mental health apps, including BetterHelp and Talkspace, exploded in popularity during the COVID-19 pandemic, marketing themselves as a “cost-effective alternative to traditional therapy.” However, they appear to be taking advantage of the “regulatory gray area” in the Health Insurance Portability and Accountability Act of 1996 (HIPAA) to exploit their patients’ data for profit.

A February 2020 investigation found that BetterHelp was sharing analytics with Facebook about how often users opened the app, and metadata from every message shared on the platform – giving the company information on how long, and where users were using mental health services. Former Talkspace employees claimed that “treatment transcripts (were treated) as another data resource to be mined,” and revealed that “individual users’ anonymized conversations were routinely reviewed and mined for insights” to help the company with research and marketing tactics.

In their letter, Wyden and colleagues raise additional concerns about the apps’ claims about sharing and using “anonymized” data. Both companies were sharing anonymized information with the research and analytics panel MixPanel, allowing MixPanel to see “where (users) were and what device (users) were using; approximately how old (users) were, whether (users) considered (them)selves spiritual or religious, (their) financial status, and (their) sexual orientation,” as well as information about where and when users had used therapy. A 2019 study reported that even anonymized data could be used to identify individuals, finding that with just a zip code, gender, and date of birth, companies could identify an “anonymized” person 81% of the time. 

Given these concerns, Wyden and colleagues call on BetterHelp and Talkspace to answer a set of questions about the type and breadth of data they share with third parties, including Big Tech companies like Google and Facebook; the methods they use to protect clients’ information; and their processes to inform potential clients and current users about their privacy policies and the risks of data sharing by July 6, 2022. 

The letter was led by U.S. Senator Elizabeth Warren, D-Mass. Alongside Wyden, the letter was signed by U.S. Senator Cory Booker, D-N.J.

The full text of the letter is here.