Cerner, Duke create Learning Health Network to automate data for research

Smoking, depression apps sell data to Google and Facebook, study finds

That mental health app might share your data without telling you

Free apps marketed to people with depression or who want to quit smoking are hemorrhaging user data to third parties like Facebook and Google — but often don’t admit it in their privacy policies, a new study reports. This study is the latest to highlight the potential risks of entrusting sensitive health information to our phones.

Though most of the easily-found depression or smoking cessation apps in the Android and iOS stores share data, only a fraction of them actually disclose this. The findings add to a string of worrying revelations about what apps are doing with the health information we entrust to them. For instance, a Wall Street Journal investigation recently revealed the period tracking app Flo shared users’ period dates and pregnancy plans with Facebook. And previous studies have reported health apps with security flaws or that shared data with advertisers and analytics companies.

In this new study, published Friday in the journal JAMA Network Open, researchers searched for apps using the keywords “depression” and “smoking cessation.” Then they downloaded the apps and checked to see whether the data put into them was shared by intercepting the app’s traffic. Much of the data the apps shared didn’t immediately identify the user or was even strictly medical. But 33 of the 36 apps shared information that could give advertisers or data analytics companies insights into people’s digital behavior. And a few shared very sensitive information, like health diary entries, self reports about substance use, and usernames.

Patient data: who's in the driving seat? - HealthManagement.org

These issues surrounding data ownership and control and empowerment of the patient took centre stage at HIMSS19’s ‘Consumerisation of Healthcare Summit’. So is the data owned by the patient, provider or payer? Some health tech experts argue this is the wrong way to look at data. They say the issue goes beyond ownership, but who is sitting in the driver’s seat when it comes to how that data is used.

Summit participant, Christopher Sealey, cofounder of Coverus, pointed out that the patient can have multiple reasons for giving researchers access to their data.

“I have a question over ownership because individual decisions I make are not pure and my motivation can be compromised by my financial situation, my lack of information etc., and also my individual decisions of what I do with my data could have very big effects on other people and my community and workplace,” Sealey said. “So I think when we say the patient should own their data, I think that comes from the ethos of wanting the patient in control, but I think we have to realise that individual ownership may not actually help the patients as much as we think.”

Nicolas Schmidt, chief product officer at Embleema, emphasised the need to “empower” patients to take back full control of their data. When this data is used to help create a new treatment, for example, Schmidt said that patients should be compensated for it.

Providing compensation or incentives to patients could also promote the exchange of “clean data”, creating a win-win situation for both patients and researchers, according to Kamal Obbad, cofounder and CEO of Nebula Genomics. “The way the system is set up today, the people we want to be winning, aren’t winning. The patients aren’t winning, researchers aren’t winning because they are getting data that isn’t clean,” Obbad said. “You talk to biopharma, they are telling us that the data sets they are collecting from third-party data brokers are subsets of data and it doesn’t make any sense. We do want to find a way to engage patients and incentivise them to participate in this process to share what is clean data, to share what is longitudinally so we get holistic views of health data.”