Need to know
- US online therapy platform BetterHelp has copped a massive fine for illegally sharing data
- The company is looking to expand its Australian operations and customer base
- Experts are calling for an investigation into whether laws were breached here too
If you've listened to a podcast, you've probably heard an ad for BetterHelp.
The US-based online therapy platform claims to have the world's largest network of therapists and to have been accessed by 4.7 million customers in the US and around the world. BetterHelp's marketing in Australia is all over social media platforms.
But the ads don't tell you everything. In 2023 BetterHelp was fined $US7.8 million ($11.7 million) by the US Federal Trade Commission (FTC) for sharing the health data of customers with platforms such as Facebook and Snapchat.
BetterHelp shared the sensitive information for the purposes of advertising, something the business had promised not to do. Privacy experts here are now wondering whether laws were also breached in Australia.
What is BetterHelp?
Dr Piers Gooding, a Latrobe University researcher on disability and health issues, has looked into BetterHelp. He says the platform's model can be described as an "Uber of therapy", connecting patients to therapists on demand.
The platform promotes its flexibility, allowing users to use text, chat, phone or video calling to have a session with a therapist.
Another selling point is the price. With subscriptions at $90–120 a week, BetterHelp bills itself as an affordable option for people seeking therapy.
The platform promotes its flexibility, allowing users to use text, chat, phone or video calling to have a session with a therapist
But is that pitch relevant to Australians? Gooding says the platform hasn't taken off in Australia to the extent it has in the US, perhaps because Australia's Medicare system provides rebates for registered psychological therapy, which makes regular face-to-face mental health care much more affordable than in the US.
"Medicare means that Australians can get subsidised support. It's a different environment to America where companies like BetterHelp might offer something that people can't find elsewhere for that price," says Gooding.
BetterHelp in Australia
According to online reviews, one of the ongoing gripes of non-US users of the platform is that counsellors are mostly US-based and work to US time zones. Some users in the UK, for example, complain on online review forums about paying for the service, then being unable to book suitable times.
Regardless, BetterHelp wants to grow its Australian user base. Along with social media ads targeting Australians, the company has made deals with Australian influencers on channels like YouTube.
In Australia, there is no mandatory regulation of online mental health or therapy platforms
In May, CHOICE found job ads posted on LinkedIn calling for new mental health counsellors to work on the BetterHelp platform in Australia.
In Australia, there is no mandatory regulation of online mental health or therapy platforms, and Gooding says companies like BetterHelp are looking to operate in this regulatory gap.
Australia does have something called the National Safety and Quality Digital Mental Health Standards, which apply to mental health and crisis support services that are facilitated by technology – but they're voluntary.
Organisations such as the mental health crisis phone line Lifeline have signed up to the standards, but BetterHelp has not applied for accreditation.
BetterHelp wants to grow its Australian user base.
FTC action against BetterHelp
When the FTC took action against BetterHelp, it wasn't for breaching privacy laws. It was essentially for misleading and deceptive conduct, because the company had told users their data wouldn't be shared with third parties.
The FTC, the equivalent of Australia's ACCC, said the company had used and disclosed email addresses, IP addresses and health questionnaire information to the social media platforms.
BetterHelp put out a statement at the time saying the reason for sharing the data in question (that the FTC alleged was in breach of the law) was so it "could deliver more relevant ads and reach people who may be interested in our services".
The statement also says, "This settlement, which is no admission of wrongdoing, allows us to continue to focus on our mission to help millions of people around the world get access to quality therapy."
Changes to information about data sharing
BetterHelp has since changed the way it informs users of its data-sharing practices. The sharing settings now tell users that they "share data with trusted service providers, but not with third-party advertisers or analytics companies".
Other data-sharing practices explained on their website have an opt-out function.
BetterHelp's privacy policy starts with an acknowledgement that such documents "can be dense and inaccessible", then goes on to run over 9000 words, which would take an average reader 37 minutes to read.
Did BetterHelp breach Australian privacy laws?
Malcolm Crompton was Australia's Privacy Commissioner from 1999 to 2004. He believes the data gathered and shared by BetterHelp with Facebook would be classified as "health information" under Australian law and would therefore be considered "sensitive information" as defined by the Privacy Act. This would give it a stronger level of protection here under the law.
"If they share the fact that you had given your email address with a therapy company, there are certain inferences about you, your mental health, that can be drawn from that. In my view those inferences mean that this information would constitute health information," he says.
The real issue here is that, in Australia, we have really little enforcement of the Privacy Act
Jeannie Paterson, University of Melbourne
Jeannie Paterson from the University of Melbourne's Centre for AI and Digital Ethics says there are valid reasons, such as workplace discrimination, that some people choose to keep their mental health information private and that needs to be respected.
"The real issue here is that, in Australia, we have really little enforcement of the Privacy Act. This may be in breach, but does the Office of the Australian Information Commissioner have the resources to investigate? To test it in court?" she says.
Investigation needed
CHOICE consumer data advocate Kate Bower says that, despite the stretched resources of OAIC, there is enough evidence of overseas wrongdoing by BetterHelp to warrant an investigation here in Australia.
"The FTC's findings about BetterHelp are disturbing to consumers who would be shocked to discover their sensitive data has been shared for advertising. Australian consumers deserve to know what BetterHelp has been doing with their data here, and we're urging the Privacy Commissioner to investigate any potential misuses."
Crompton agrees that an investigation is needed.
"I think you've really got at least a sufficient case to make that it's worthwhile investigating, even if the only reason is we don't know," he says.
Privacy reforms needed for clarity
The federal government is in the process of reforming the outdated Privacy Act and Bower says mandatory Privacy Impact Assessments could help provide clarity about whether actions like BetterHelp's fall outside of the law.
"Our privacy regulator desperately needs more powers to investigate these matters, and that's what we're hoping to see in the government's reforms to the Privacy Act later this year," she says.
Our privacy regulator desperately needs more powers to investigate these matters
Kate Bower, CHOICE consumer data advocate
"We desperately need obligations on businesses that engage in data use and collection to notify the public on any high-risk practices. This would help regulators, advocates, and consumers to hold misbehaving businesses to account.
"Consumers in this country would also benefit from a better resourced privacy regulator, and we're hoping extra funds to the Office of the Australian Information Commissioner go hand-in-hand with stronger powers," Bower concludes.
BetterHelp did not respond to requests for a comment.
Stock images: Getty, unless otherwise stated.
