How the hidden trade in our sensitive medical information became a multibillion-dollar business, but has done little to improve our health-care outcomes
Hidden to consumers, patient medical data has become a multibillion-dollar worldwide trade industry between our health-care providers, drug companies, and a complex web of middlemen. This great medical-data bazaar sells copies of the prescription you recently filled, your hospital records, insurance claims, blood-test results, and more, stripped of your name but possibly with identifiers such as year of birth, gender, and doctor. As computing grows ever more sophisticated, patient dossiers become increasingly vulnerable to reidentification and the possibility of being targeted by identity thieves or hackers.
Paradoxically, comprehensive electronic files for patient treatment—the reason medical data exists in the first place—remain an elusive goal. Even today, patients or their doctors rarely have easy access to comprehensive records that could improve care. In the evolution of medical data, the instinct for profit has outstripped patient needs. This book tells the human, behind-the-scenes story of how such a system evolved internationally.
It begins with New York advertising man Ludwig Wolfgang Frohlich, who founded IMS Health, the world’s dominant health-data miner, in the 1950s. IMS Health now gathers patient medical data from more than 45 billion transactions annually from 780,000 data feeds in more than 100 countries. Our Bodies, Our Data uncovers some of Frohlich’s hidden past and follows the story of what happened in the following decades. This is both a story about medicine and medical practice, and about big business and maximizing profits, and the places these meet, places most patients would like to believe are off-limits.
Our Bodies, Our Data 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 patient. We, the public, deserve a say in this discussion. After all, it’s our data.
“Tanner is a persistent and experienced researcher...and the information he gleans paints an alarming picture...A thorough report, carefully researched and well-documented, aimed at both general readers and policymakers.”
“Patient data presents both promise and peril. Important public and private interests hang in the balance as consumers, providers, advocates, industry actors, and governments weigh increased transparency, informed consent, privacy issues, and the right to know. In Our Bodies, Our Data, Adam Tanner tangibly advances a vital conversation—adroitly articulating choices that may profoundly shape the future of health and health care.”
—A. Eugene Washington, M.D., Chancellor for Health Affairs, Duke University, President and CEO, Duke University Health System
“Adam Tanner has thoroughly researched how big pharma continues to trample on our medical privacy. This is a terrifying and strongly-argued account of how drug companies collect, analyze, and sell patient data and a must-read for anyone who has ever been to a doctor.”
—J. Kyle Bass, Chief Investment Officer, Hayman Capital Management
What the Pharmacy Knows
Data Bonanza for Pharmacies and Middlemen
The Covert Alliance
The Dossier on Your Doctor
Supreme Court Battle
Studying Patients over Time
Fighting for Patients
How Safe Is “Anonymized”?
Korean War over Patient Data
The Patient’s Data Tower of Babel
Intimate, Anonymized, and for Sale
At the Bottom of Niagara