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Our bodies, our data : how companies make…
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Our bodies, our data : how companies make billions selling our medical records (edition 2016)

by Adam Tanner

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6322420,781 (3.58)1
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. As computing grows ever more sophisticated, 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.--… (more)
Member:jose.pires
Title:Our bodies, our data : how companies make billions selling our medical records
Authors:Adam Tanner
Info:Boston : Beacon Press, [2016]
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Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records by Adam Tanner

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Showing 1-5 of 23 (next | show all)
Note: I accessed a digital review copy of this book through Edelweiss.
  fernandie | Sep 15, 2022 |
This review was written for LibraryThing Early Reviewers.
Tries to be both a human interest story and a history report or something, but doesn't really manage either. The author peppers these random details in about the lives of the various people that he writes about, but those details don't seem to exist for any particular reason. Why does it matter that some random woman was in the same graduating class as a famous movie star? Why does it matter that this business executive was closeted? There never seems to be any connection to all of this, which makes a lot of what is being said feel distracting and unnecessary. The facts of the industry itself are a little more cohesive but they also don't seem to connect to a thesis, and sometimes fail to present information that feels substantial rather than general. The book lacks analysis. Yeah, there does appear to be something of a point, but I couldn't help but feel like I was reading a lot of padding as I went through, like this is a long form article that was beaten into the length of a book. At one point I read the sentence, "Knowledge couplers were at the heart of his company," and thinking that I had missed something went back to find out what knowledge couplers were. Then I read forward, and then I checked the index, where this sentence is the only reference cited. What are knowledge couplers? I still don't know.

Weird stuff like this is common in the book. After getting almost all the way through I realized that the information I was getting out of it was actually very shallow, and the author's inability to write forcefully, or make strong arguments, made even the small moments of insight bland and difficult to spot. A disappointing book. ( )
  bokai | Jan 28, 2018 |
This review was written for LibraryThing Early Reviewers.
Is there a cognitive dissonance between the Health Insurance Portability and Accountability Act of 1996 (Hipaa), a federal law designed by the Legislator to safeguard the privacy of the American Citizen's medical information and the grand computerized bazaar that healthcare, health insurance, medicine.doctors and the distribution of pharmaceutical products has become?

The historical approach of author Adam Tanner is attractively narrated and will pull you in even if you are remotely interested in 1960's New-York "med men" advertising history.

As computers become more sophisticated in data mining capabilities, investors created companies that thrive on automatizing this collection process to reach the level of "big data". The question remains to be answered whether this industry benefits the patient when mapping prescription drugs and if it really advances research and medicine. Or is profit for its shareholders its finality.
Is the anonymity of your prescription drug really safeguarded by simply not disclosing your name to the data company? Can your patient profile be reconstructed - albeit without your name - by gathering data on which social platforms you frequent as a pharmacist, physician, dentist, psychiatrist, psychoanalyst or hospital client? I found this book describing well this environment without partisanship opting more for an objective approach letting the reader decide in view of the facts.
  Artymedon | Jun 29, 2017 |
This review was written for LibraryThing Early Reviewers.
As a person who works in survey research I was very interested to read Our Bodies, Our Data. The idea that companies are making money mining our medical records, while the electronic sharing of information between doctors and hospitals is poor at best is fascinating to me. I didn't find much to fear in this book, but I did find much to be wary of. A very interesting book on a very interesting subject.
  Jillian_Kay | May 16, 2017 |
This review was written for LibraryThing Early Reviewers.
A thoroughly-researched investigation into the ways our medical information has been exploited for profit in ways that threaten personal privacy and distort the ways we are treated. One of the fascinating points the author makes is that this has been going on for a long time. He traces the history of pharmaceutical companies getting information from pharmacies about what kinds of prescriptions they fill so that they can fine-tune and target marketing to doctors in the area. All that long before computers and Big Data came along. Americans may think HIPAA protects their medical privacy, but the monetization of "anonymized" data is massive and troubling - and it's not all that difficult to piece together data to reveal the subject. The author tackles the topic in the tone of an investigative journalist and has conducted a lot of face-to-face research. Fortunately he also includes a comprehensive list of references which helps readers assess his conclusions.

Some of the reviews here suggest the author is hyperbolic and prone to scare-mongering. I think we have plenty to be scared about. Here's an example, chosen at random:

"You may not realize data brokers harvest names from patient forums [online] and hospital sites to add to lists of people with a particular disease. The largest data brokers assemble elaborate profiles that list wealth, real estate holdings, employment, religion, ethnic background, sexual orientation, hobbies, and many other categories, which may include health. Since some niche brokers focus on producing named lists of individuals according to ailments, social media can enhance the details they can obtain." And none of that is protected by HIPAA.

I thought it was a fascinating if admittedly alarming book that would appeal to those interested in the uses of data, the impact of technology on society, or (especially) those interested in medicine and social policy.
  bfister | Apr 20, 2017 |
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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. As computing grows ever more sophisticated, 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.--

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