Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records

by Adam Tanner

Overview

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.

Product Details

ISBN-13:	9780807059029
Publisher:	Beacon Press
Publication date:	02/06/2018
Pages:	248
Sales rank:	819,987
Product dimensions:	5.90(w) x 8.90(h) x 0.70(d)

About the Author

Adam Tanner is writer in residence at Harvard University’s Institute for Quantitative Social Science and the author of What Stays in Vegas: The World of Personal Data—Lifeblood of Big Business—and the End of Privacy as We Know It, which the Washington Post named one of fifty notable works of nonfiction in 2014.

Tanner served as a Reuters correspondent from 1995 to 2011, including as bureau chief for the Balkans (2008–2011) and San Francisco (2003–2008). He was also posted in Berlin, Moscow, and Washington, DC. He has appeared on CNN, Bloomberg TV, MSNBC, CNBC, NPR, the BBC, and VOA; has written for magazines including Scientific American, Forbes, Fortune, MIT Technology Review, and Slate; and has lectured across the United States and internationally. For the 2016–17 academic year he is the Snedden Chair in Journalism at the University of Alaska Fairbanks.

Table of Contents

Introduction

CHAPTER 1
What the Pharmacy Knows

CHAPTER 2
Data Bonanza for Pharmacies and Middlemen

CHAPTER 3
The Covert Alliance

CHAPTER 4
Patient Power

CHAPTER 5
The Dossier on Your Doctor

CHAPTER 6
Supreme Court Battle

CHAPTER 7
Studying Patients over Time

CHAPTER 8
Fighting for Patients

CHAPTER 9
How Safe Is “Anonymized”?

CHAPTER 10
Korean War over Patient Data

CHAPTER 11
The Patient’s Data Tower of Babel

CHAPTER 12
Twenty-First-Century Advances

CHAPTER 13
Intimate, Anonymized, and for Sale

CHAPTER 14
At the Bottom of Niagara

Conclusion

Acknowledgments

Notes

Bibliography

Index

Editorial Reviews

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.”
—Kirkus Reviews

“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

From the Publisher

2016-10-11
A disturbing look at the threat to privacy created by the lucrative and growing health care data-mining industry.In his previous book, What Stays in Vegas: The World of Personal Data—Lifeblood of Big Business—and the End of Privacy as We Know It (2014), Tanner, a writer in residence at Harvard University's Institute for Quantitative Social Science, took a broad look at the enterprises that gather and sell computer-generated data on consumers. Here, he zeroes in on the trade in patient medical information, discovering that an industry dealing in intimate personal information is very closemouthed about its own inner workings. Tanner is a persistent and experienced researcher, however, and the information he gleans paints an alarming picture. As doctors and hospitals adopt electronic health records, companies operating these systems sell the information to data-mining enterprises, who in turn are making big money marketing the data on millions of patients to insurers, makers of medical devices, drug manufacturers, physicians, and attorneys. Although the patient's identity is removed from a record, enough information is retained that can reidentify the person. Through his own personal experience in changing health insurance plans, Tanner reveals how patients have little say in how their data will be shared. He asserts that our health care system has failed to provide easy access to comprehensive medical records by doctors, who need it for treatment of their patients, and he rebuts the claim by data miners that the information they gather advances science by providing valuable information to medical researchers. Finally, he takes a stab at reforming the system, a task that first requires that patients know that this threat to their privacy exists and how it affects them, information that Tanner provides in detail. A thorough report, carefully researched and well-documented, aimed at both general readers and policymakers.

Kirkus Reviews