Telemedicine companies and therapy apps are collecting mental health data from millions of Americans and selling it online for pennies.
Telemedicine companies are selling data including patient names, mental health diagnoses and prescriptions for as little as six cents amid a dramatic increase in people using mobile health apps during the Covid pandemic, according to a new report published by Duke University.
The pandemic has increased anxiety and depression, and access to individual therapy has become increasingly difficult. As a result, more and more Americans are turning to telemedicine.
“A loophole in data laws means users may not even realize apps are taking or selling their sensitive mental health information to other companies,” the Daily Mail reports. “It can be used for targeted advertising, including drug offers.”
Joan Kim, a researcher at Duke University, investigated the accessibility of purchasing mental health data online.
He googled the terms “mental health data for sale” and “health information for sale.” He requested “any health and/or mental health data available for your purchase or use” from 37 data brokers.
Ten brokers responded to his request and began negotiating with him to sell highly sensitive mental health information.
A company has revealed that it classified its patient data into lists of “anxiety sufferers” and “consumers with clinical depression in the United States”.
The data included details about the patients’ mental health, including diagnoses of ADHD, bipolar and insomnia, as well as information about their credit scores, marital status, gender, religion, number of children at home, net worth and date of birth.
Kim offered $2500 to one of the data brokers in exchange for data on depressed and anxious patients. Data Broker agrees to provide highly sensitive mental health data that includes names and addresses of individuals with bipolar disorder, depression, anxiety disorders, panic disorder, cancer, PTSD, OCD and personality disorders, race and ethnicity information. No limitations on how the information may be used.
Another data broker charges $0.20 per health record and requires buyers to purchase at least $2,000 worth of personal records.
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The more records bought, the lower the price — meaning for 435,780 records, the cost per record was just $0.06, the report said.
Another data broker charges more than $100,000 a year on a subscription basis to access data that includes information on individuals’ mental health conditions.
For the mental health records of 5,000 Americans in the aggregate, one data broker charged $275.
A data broker said the requested data on individuals’ mental health conditions was ‘extremely limited’, but later said that as long as Ms Kim did not interact with individuals in the dataset, she could use the data freely.
Not all sales representatives using video platforms like Zoom or Microsoft Teams revealed their faces to Ms. Kim.
Although the Health Insurance Portability and Accountability Act, HIPPA, prohibits hospitals, doctors’ offices and “covered health organizations” from sharing Americans’ health data, the law does not protect health data when sent online to telemedicine sites or apps. Telemedicine sites and mobile health applications are thereby legally permitted to share or sell your health data.
Justin Sherman, a Duke senior fellow who led the research team, warned that data brokers are offering “a tasting menu for buying human 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 for sale, often for just a few hundred dollars,” Sherman told The Washington Post.
The group of researchers called on the federal government to expand HIPAA laws to prohibit the sale of mental health data on the open market.