Mary F. E. Ebeling knows personal data is just that: personal. An associate professor of sociology at Drexel University and the author of the book Afterlives of Data: Life and Debt Under Capitalist Surveillance, released earlier this summer, Ebeling has researched big data, trying to link the various ways a Google search or even a medical test can make an imprint on our digital and physical lives.
Solidly neither a marketer nor a data scientist, Ebeling provides a look at the ways we can, at times unknowingly, share our data with those willing to monetize it in the healthcare industry.
And sometimes, that monetization can come at a personal cost. For example, Ebeling opens Afterlives with an anecdote in which she receives parenting-related marketing emails and mail nearly five years after a miscarriage.
“Where my pregnancy resulted in a miscarriage, my data baby gestated for nine months and was born at term, with no complications and completely healthy. Over those years, my data baby grew from being a newborn, to a toddler, to a preschooler, and finally, the last time I heard from my data baby, it was getting ready to start kindergarten,” she wrote.
It’s an experience she described as an “uncanny haunting” to Marketing Brew in an interview, where someone gets “advertising based on something that they’ve not talked about, or an experience with their data doppelgänger haunting them.”
Though it’s near impossible to audit a digital ad—how, why, or where it was served—Ebeling connects the experience to her research in the healthcare industry, where patients rarely know they’re feeding “massive databases maintained by healthcare providers and public and private insurers, or payers—often called data ‘lakes’ and ‘oceans.’”
To wit, she notes that the Health Insurance Portability and Accountability Act (HIPAA) sets no restrictions on patient data used for marketing purposes so long as it’s de-identified. In the book, she shadows a lab that’s partnering with a startup trying to break into the US market that claims it can do the de-identifying, but, according to Ebeling, “is unwilling to share its algorithm or method of synthesis, even with its partners,” making its claims difficult to verify.
Get marketing news you'll actually want to read
Marketing Brew informs marketing pros of the latest on brand strategy, social media, and ad tech via our weekday newsletter, virtual events, marketing conferences, and digital guides.
Other medical information, such as purchasing over-the-counter products like pregnancy tests, isn’t always protected by HIPAA.
And “because companies like Experian have this really powerful intellectual property, it takes two or three data points to re-identify a patient’s data. It’s rather easy,” Ebeling told us. Something that has been borne out again and again by researchers and amplified in a post-Roe world.
She pointed out that the data collected on consumers and patients can be used to a dizzying effect, like how a medical patient’s credit score “can be used to predict the likelihood of readmission or medication adherence,” for instance.
“There’s no kind of bargain that we can consciously make as patients and as consumers when our health data is taken and used in ways we did not consent to, that we don’t even know,” she said.
What could advertisers take from the book? “In many ways, even though they’re experts in their industry, working day in and day out with data, they too [often] don’t know possibly all the ways that health data is used and exploited and is actually, in many ways, harming people,” she said. “That’s one thing I would hope your audience should learn about: The ways that people are directly impacted by having their data kind of come back to them in ways that may not be beneficial to them.”