☁️🍄 Issue No. 004: Privacy, Please

Welcome back to Headlines, your weekly dispatch on the mental health industry. We’re celebrating a nice milestone this week: 1K subscribers! 🎉 Thank you all for reading and sharing. It means a lot :)

Today, we’re digging into the recent controversy around mental health data privacy. 

PRIVACY, PLEASE

Now for sale: lists of people with depression, anxiety, and other mental health disorders. 

WHAT’S HAPPENING

A new report from Duke University found several data brokers hawking mental health data. The extent of the privacy invasion varies, but the type of info traded is disconcerting, including:

• Bulk data in anonymized form.

• Highly personal info like names, home addresses, and incomes.

• Salable lists dubbed “Anxiety Sufferers,” as well as specifics on connected medical devices, data on DNA tests, and details on people’s kids. 

Not only was it alarmingly easy to get, the data was dirt cheap — some firms were selling info on 5K individuals for as low as $275. 

SHOOTING FROM THE HIPAA

Sounds criminal, right? Wrong. Believe it or not, all of this is perfectly legal.

Many might question where HIPAA—the policy enacted in 1996 to protect patients’ privacy and ensure proper stewardship of health data—comes into play.

Alas, there’s a loophole. HIPAA’s protections only extend to covered entities like doctors, healthcare providers, and insurance companies. 

That means that when you tell your doctor you’re depressed, HIPAA restricts how that information can be used. But tell a mental health app, mood tracker, or other digital mental health tool that you’ve been feeling anxious, and they have carte blanche. 

WHY IT MATTERS

People are sharing more of their sensitive health info online than ever. 

The pandemic led to a deluge of new apps — first-time downloads of the top 20 mental wellness apps hit 4M in April 2020. The problem is, many of these apps have alarmingly poor privacy policies.

*Privacy Not Included, a consumer guide from Mozilla, flagged 32 mental health and prayer apps last May for substandard privacy and security. At best, policies were messily written and vague. At worst, wrote researcher Misha Rykov, “they operate like data-sucking machines with a mental health app veneer.”  

Ultimately, the HIPAA loophole is hurting both patients and the mental health tech movement as a whole. Failure to address these concerns damages patient trust, a crucial component to therapeutic engagement and seeking of support.

Allowing data brokers to run rogue (or masquerade as mental health tools) directly undermines mental health companies who are doing their best to responsibly steward user data. 

FTC crackdown. That might all be starting to change. This month, the FTC accused GoodRx, a drug discount app, for violating the Health Breach Notification Rule (HBNR) by sharing sensitive user data with ad firms. 

That marks the first time the FTC has enforced HBNR, which states that sharing any health data without consent is against the law. Most importantly, it’s declaring that “consent” doesn’t count if companies are burying details in pages of privacy policies or using tricky UI to get people to click the wrong button. 

Many see it as the FTC finally drawing a line in the sand, gearing up to crack down on health data practices. If a judge approves the settlement, the implications could be enormous. 

TAKEAWAY 

In the meantime, concerns persist. Even if companies have good intentions, hackers can break through defenses. The 2020 Vastaamo data breach saw nearly 30K patients get blackmailed with sensitive psychotherapy data. 

Which leads us to a bigger question: Does more tech simply lead to more problems? 

Perhaps, but it doesn’t seem like healthtech is going anywhere. Duke’s study will hopefully serve as a wake-up call as we increasingly weave digital tools into our lives.

And though federal regulation seems imminent, policy can only go so far and will likely be slow-moving. That’s when the onus lands on mental health builders to keep privacy and data concerns at the forefront when crafting tools. 

That’s especially true when taking on roles of traditional clinicians: “Informed decision making is one of the core tenets of medical ethics,” writes John Torous, director of digital psychiatry at Harvard.

Punchline: If mental health tech companies truly want to make a positive impact, they’ll need to prioritize protecting the patients they’re serving — in all forms. 

QUICK HITS

• Girl trouble. Troubling trends from a major CDC report: Nearly 1 in 3 teen girls seriously considered attempting suicide in 2021, up 60% since 2011. 

• Industry snapshot. From drug development to clinics and retreats, take a look at Empath Ventures’ Psychedelics Industry Map. 

• All in favor. Legislators in both Hawaii and Arizona passed bills to research psilocybin- and MDMA-assisted therapy; the latter voted to pass unanimously. 

• Mind the gap. Nearly 50% of kids who go to the ER in a mental health crisis don’t get the follow-up care they need.

• DMT test. Small Pharma dosed its first in-human clinical trial using its proprietary DMT drug, SPL028, in treating major depression.  

NEWS & TRENDS

1) Spit test 

Ever think about the connection between your oral microbiome and your mental health? Me neither. But a recent study conducted at the University of Florida found some surprising links between suicidal ideation and oral bacterial flora.  

Researchers say this discovery could lead to the use of spit tests to screen for suicide risk, or new ways of administering oral probiotics to help improve mental health. 

While some balk at mouth swab tests, that seems unlikely to happen anytime soon. The bigger takeaway here is that the oral microbiome may play a much bigger role in mental health than we realize — and is worth devoting more research toward. → Read more 

2) Peer to peer

Peer-based support apps are gaining momentum. Companies like ShareWell (see below) are attracting VC attention while apps like Humans Anonymous, Chill Pill, and Togetherall are facilitating thousands of anonymous virtual communities. 

Elsewhere, schools like Hamilton College train undergrads to serve as peer counselors to other students; platforms like TimelyMD have launched services across universities where students help other students with minor to moderate issues. 

Do these models work? Studies yield mixed results; one paper found that peer support didn’t reduce symptoms of psychiatric conditions, while another linked it to greater happiness and reductions in symptoms of depression and anxiety. One thing’s for certain: as the therapist shortage worsens, any help’s likely better than none. → Read more 

DEALS & DEBUTS

🍃 Zelira Therapeutics, a cannabinoid-based medicine developer, closed $8.6M from Cantheon Capital LLC. The company will use the funds to conduct its phase 2 and phase 3 clinical trials to treat autism spectrum disorder (ASD). → source 

🎲 Cube Psytech, a Canadian psychedelics company, signed an LOI to acquire Translational Life Sciences (TLS). The deal is contingent on Cube completing a private placement of at least $2M and will provide the firm with TLS’ 2.5 years of brain receptor profiling data on 200+ species of mushrooms.→ source 

🫂 ShareWell, a peer-support therapy platform, raised $1.3M in pre-seed funding. The startup offers 10K online community support groups to alleviate loneliness and serve as a complement to traditional therapy.→ source 

🧬 Delix Therapeutics, a psychedelic therapeutics company, is joining forces with Cellectricon and Expressive Neuroscience to expedite its drug development pipeline.→ source

🧪 LongeVC, an early-stage biotech investment fund, invested an undisclosed amount in Freedom Biosciences, a next-gen psychedelics therapeutics company pioneering ketamine and other compounds. → source

🧸 Sesame Workshop, the nonprofit behind Sesame Street, is partnering with the US DoD to roll out self-care content for military families. The digital resources include videos offering simple strategies for mental health, from celebrating little wins to meal planning.→ source

WHAT I’M READING

• The flipside of ketamine. As we wrote in Issue No. 001: Down the K-Hole, the ketamine therapy industry needs to temper expectations. Journalist Steven Petrow describes his “terrifying” experience after reading “buoyant reports” of ketamine successes. → Washington Post

Cool, that’s all for this week! Let me know if there are any companies, topics, or trends you’ve been curious about and would like to see me dig into. 

In the meantime, here’s a toon by Paul Noth to tide you over until next Sunday 👋

-Mel 

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