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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.
- Sales Rank: #409722 in Books
- Published on: 2017-01-10
- Released on: 2017-01-10
- Original language: English
- Number of items: 1
- Dimensions: 9.30" h x .90" w x 6.30" l, 1.25 pounds
- Binding: Hardcover
- 248 pages
Review
“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
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.
Most helpful customer reviews
3 of 3 people found the following review helpful.
Overly Sensationalist
By Elle
With only seven reviews, I took a chance on the book, because its subject matter is fascinating. That was a bad call. This would have been clearer had the back cover been online. Of the 6 quotes there, only the first two are on this book. Furthermore one of the two is from President Obama. But it is not on the book, just on the topic it covers. The author dramatizes stories and facts and poorly organizes chapters.
In some works a true, but fiction style prosed anecdote illustrates the point, here is reduces his credibility. "A flash on inspiration hit him. He became so excited that he pulled his Ford Expedition to the side of the four-lane highway to think clearly." The author often relies on such narratives to draw your eye away from the lack of numbers and statistics.
Furthermore, he begins the book talking about the sale of anonymized medical data. He goes on about how bad it is, but it's not for 87 pages that he discusses safety of anonomitization.
1 of 1 people found the following review helpful.
Ripe for Disruption
By Raj Sharma
Thorough investigative journalism. Really sheds light on the dark alley of medical data brokering. Also gives hope that something can be done. Patient consent, opt-in opt-out registeries, patient awareness, mandates, and laws can prevent medical data trafficking. However, it will require that patients start treating their healthcare data as an asset similar to financial assets. It is not clear how big this market is. Market cap of one or two data brokers gives some idea about the size of this industry. Also, if the individual data is only worth $3-$7, it is hard for patients to treat their medical records as a valuable asset. Nevertheless, it should make all of us furious that someone else is benefiting from selling something that belongs to us and doing so without our knowledge and consent.
4 of 5 people found the following review helpful.
Helps along an important conversation on data sharing
By Andrew D. Oram
People have mistrusted what large institutions were doing with their health data for a long time--particularly after records were digitized. Tanner talks about the realities, going back to the 1950s and summarizing where we are today. The book is well-balanced, quoting data miners sympathetically but pointing out also the risks of sharing patient data, even in anonymized form. Actually, there is little evidence either of real harm or of real research benefits from this data sharing. As Tanner says in the conclusion, his goal is to start a conversation--and he has started it already. The book meets this goal well.
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