Google’s Project Nightingale and Emergent Medical Data

What Other’s Health Data Says About You

You know phone apps collect location, call history, social media posts, and more. These data collecting machines are perpetually improving at collecting relevant information to identify customers for selective advertisements. While this dystopian targeted advertising landscape we occupy is frightening, it is merely the tip of iceberg as to the potential of commercialization or discrimination from personal data. Data holds enormous value in our digital economy and no data holds a higher valuation than patient medical records. This data can be used by advertisers to push expensive pharmaceuticals and tailor behavioral ads to target a person’s medical conditions. This medical data can also be collected by insurance companies to calculate patient premiums.

Health data influences so many aspects of our lives and our identity. A diagnoses could subject us to lifestyle changes or life-long treatments. For those not wanting to announce an underlying medical condition, a lifestyle change for health reasons can still be observed using our digital fingerprint. In addition, some behaviors may be indicative of undiagnosed medical conditions. These inferences of medical conditions from a digital footprint is described by Mason Marks as emergent medical data (EMD). In an article published in June of this year, Facebook researchers show that information from social media posts can correlate with underlying medical conditions. The study included patient medical records and Facebook statuses from 999 patients. The study showed effectiveness in diagnosing patients with diabetes and mental health conditions based solely on Facebook posts.

Facebook posts are an outward facing media meant to express sentiment to a broader community. Search results are more “private” to a user and thus many people will search for information they would never post publicly. This trust in search engines make companies that control them particularly adept at collecting underlying health data as patients may begin their health journey by gathering more information following a diagnosis. Google, the largest search engine of all was recently exposed to have negotiated a secretive deal with Ascension, the largest nonprofit health system in the United States. This deal titled Project Nightingale, gave Google access to 50 million patient medical records. The size of Google’s health record database and the expanded information from “private” search results gives Google an unprecedented ability to identify words, phrases, and other variables that reflect the presence or early onset of disease in all users.

Project Nightingale created a gold standard health database for Google to discover new markers of health and apply them across a wide range of company platforms to infer a user’s medical conditions. Google is most likely exporting this gold standard dataset to other branches within the parent company, Alphabet. For example, Google and Nest are working to patent a smart home health algorithm capable of inferring from an occupants’ behavior whether they are developing Alzheimer’s disease or substance use disorders. These new markers of health will be protected as trade secrets and withheld from the public, potentially costing millions in healthcare costs and an untold number of lives.

Google’s ambitions in the health sphere are growing, as evidenced by its recent acquisition of Fitbit. 27 Million FitBit users provide a new angle to the consumer health surveillance empire Google is building as it expands into wearable health technology.

Google is not alone in its ambitions to collect consumer health data. Apple Health and the Apple Watch wearables are ripe for exploitation by Apple. Microsoft and Amazon are not far behind with the tech companies offering products such as health insurance and using data collected from shopping habits and smart speakers to predict a user’s health information.

All data is not created equal. Patient medical records are valuable because they can be used as a gold standard to train algorithms to search for another user’s undisclosed or undiagnosed medical conditions. Tech companies are beginning to use this information to profile users for behavioral advertisements or pharmaceuticals. A friend of mine has struggled for years with an underlying medical condition and shared to me his annoyance with the constant pharmaceuticals commercials on his favorite streaming platform. How details of his underlying condition were transferred to advertisers that target his health is concerning. Will we be the target of behavior ads for an undiagnosed condition? Do these technology companies have an obligation to report an inferred condition to a user? Regulators and individuals should demand this information as more and more of our personal data are used for profit.

Sources:

https://slate.com/technology/2019/11/google-ascension-project-nightingale-emergent-medical-data.html

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0215476

https://blog.petrieflom.law.harvard.edu/2017/10/11/emergent-medical-data/