On the heels of Facebook founder and CEO Mark Zuckerberg testifying before Congress about the data breach tied to Cambridge Analytica, in which the British firm compiled Facebook user data to target American voters, Rice University medical media expert Kirsten Ostherr warns that the “scandal alerted users about what personal data Facebook routinely collects and shares with third-party apps” in an opinion piece appearing today in the Washington Post, “Facebook knows a ton about your health. Now they want to make money off it.” But many questions were left unanswered. Among them: How many apps are collecting this data, and what are they doing with it?
“While Zuckerberg claimed that even he is not fully aware of everything that happens in the Facebook digital economy, the evidence suggests that health-care information may lead to the next major data-related crisis,” Ostherr wrote.
“In early April, MSNBC reported that Facebook recently launched a project based in its secretive ‘Building 8’ group to get hospitals to share anonymized patient data with them,” she wrote. “The project was reportedly put on hold in the wake of the current scandal, but the stated plan was to match hospitals’ patient data on diagnoses and prescription information with Facebook so the company could combine that data with its own to construct digital profiles of patients.
“Zuckerberg admitted in his congressional testimony last week that Facebook does collect some medical data from users. Considering the large number of patient-support groups on Facebook that use the site for peer-to-peer health care and social support, there is plenty of medically relevant data to be mined. Membership in some patient groups numbers in the tens of thousands, with average daily posts of several hundred or more.”
Ostherr said a sampling of the types of data that users post include “tests, treatments, surgeries, sex drive, and relationships” on a breast cancer support site. Other data include location and personal profile information such as age, race, sex, educational background, employment and even cellphone numbers. In addition, many posts include photos that can be subjected to facial recognition software.
“It is not surprising that Facebook wants to move into the digital health market: So do Amazon.com, Google, Apple, Uber and all of the other big tech companies,” she said. “These businesses see an opportunity to profit from users’ personal health data because, unlike narrowly defined medical data, health and wellness data are not considered protected health information and therefore are not protected by privacy laws.
“These activities could simply be understood as advertising in the age of big data, a practice our society has so far agreed to accept,” Ostherr said. “But the unique risks from health- and medical-data mining and digital profiling of patients suggest greater stakes worthy of regulatory attention.”
To read Ostherr’s full op-ed, go here.
Ostherr, who is also the Gladys Louise Fox Professor of English at Rice, has a forthcoming book on health and big data, “Quantified Health: Learning From Patient Stories in the Age of Big Data.”
Source: Rice University