Telemedicine companies and therapy apps are harvesting and selling the mental health data of millions of Americans online for pennies.
According to a new report published by Duke University, data, including patients’ names, mental health diagnoses and prescriptions, are being sold by telemedicine companies for as little as six cents amid a dramatic uptick of people using mobile health apps during the Covid pandemic.
The pandemic has increased anxiety and depression and accessing in-person therapy has become increasingly difficult. As a result, more and more Americans turning to telemedicine.
“Loopholes in data laws mean users may not even realize the apps have taken or are selling their sensitive mental health information on to other companies,” the Daily Mail reports. “This could be used for targeted advertising including offers on medicine.”
A researcher at Duke University, Joanne Kim, investigated the accessibility of purchasing mental health data online.
She Googled the terms “mental health data for sale” and “health information for sale.” She also requested “any health and/or mental health data you may have available for purchase or use,” from 37 data brokers.
Ten brokers responded to her request and began negotiating with her to sell highly sensitive mental health data.
One company revealed it had categorized its patients’ data into lists called “Anxiety Sufferers” and “Consumers with Clinical Depression in the United States.”
The data included details about patients’ mental health including their diagnoses of ADHD, bipolar and insomnia as well as information about their credit scores, marital status, gender, religion, the number of children in the home, net worth and date of birth.
Kim offered one of the data brokers $2500 in return for data on depressed and anxious patients. The data broker agreed to provide highly sensitive mental health data that included the names and addresses of individuals with bipolar disorders, depression, anxiety issues, panic disorder, cancer, PTSD, OCD, and personality disorders, data on individuals’ races and ethnicities and gave no restrictions on how the data could be used.
Another data broker charges $0.20 per health record and required purchasers to buy at least $2,000 worth of private records.
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The more records bought, the cheaper the price — meaning for 435,780 records, the cost per record was just $0.06, the report said.
Another data broker charged more than $100,000 a year on a subscription basis for access to data that included information on individuals’ mental health conditions.
For 5,000 Americans’ mental health records in an aggregated form, one data broker charged $275.
One data broker said that the requested data on individuals’ mental health conditions was ‘extremely restricted’, but later said that as long as Ms Kim did not contact the individuals in the dataset, she could use the data freely.
All the sales representatives who used video platforms such as Zoom or Microsoft Teams did not reveal their faces to Ms Kim throughout.
While the Health Insurance Portability and Accountability Act, HIPPA, prohibits hospitals, doctors’ offices and “covered health entities” from sharing Americans’ health data, the law does not protect health data when it is sent to online to telemedicine sites or apps. Telemedicine sites and mobile health apps are thereby permitted to legally share or sell your health data.
Senior fellow at Duke, Justin Sherman, who led the research team, warns the data brokers are offering “a tasting menu for buying people’s health data.”
“Health data is some of the most sensitive data out there, and most of us have no idea how much of it is out there for sale, often for just a couple of hundred dollars,” Sherman told the Washington Post.
The team of researchers are calling for the federal government to expand HIPAA law to ban the sale of mental health data on the open market.