Book written by 2014 Abe Journalism Fellow Adam Tanner based on his project “Different Approaches in Japan and the United States in the Multi-Billion Dollar Hidden Trade in Our Private Medical Data.”
Hidden from consumers, patient medical data has become a multibillion-dollar worldwide trade between our health-care providers, drug companies, and a complex web of middlemen. This great medical-data bazaar sells copies of our prescriptions, hospital records, insurance claims, blood-test results, and more, stripped of names but still containing identifiers such as year of birth, gender, and doctor’s name. As computing grows ever more sophisticated, these patient dossiers are increasingly vulnerable to re-identification, which could make them a target for identity thieves or hackers.
Paradoxically, comprehensive electronic files for patient treatment—a key reason medical data exists in the first place—remain an elusive goal. Even today, patients and their doctors rarely have easy access to full records that could improve care. In the evolution of medical data, the instinct for profit has outstripped patient needs. This book reveals the previously hidden story of how such a system evolved internationally.
This investigative narrative seeks to spark debate on how we can best balance the promise big data offers to advance medicine and improve lives, while preserving the rights and interests of every patients. We, the patients, deserve a say in this discussion. After all, it’s our data.