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Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records
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 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.
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.
248 pages, Hardcover
First published January 10, 2017
35 people are currently reading
472 people want to read
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Displaying 1 - 20 of 20 reviews
March 14, 2017
I won this book in a goodreads drawing.
A wonderful book that records how big data was invented by the pharmaceutical industry in order to help patients, but instead helps big pharma make all sorts of money. The patient doesn't even have access to many of their own records. Congress, of course, made things worse.
You'll be angry by the time you finish this book, but at least you'll be angry at the correct people.
A wonderful book that records how big data was invented by the pharmaceutical industry in order to help patients, but instead helps big pharma make all sorts of money. The patient doesn't even have access to many of their own records. Congress, of course, made things worse.
You'll be angry by the time you finish this book, but at least you'll be angry at the correct people.
September 14, 2021
The book raises the interesting question of healthcare data privacy and balancing advancing science with commercial uses of information.
HIPAA is an acronym widely shared with consumers, generally it is thought to broadly safeguard medical data. In actuality its impact is probably more limited than people understand - ‘de identified’ data faces limited to no restrictions (though I wonder if de-identified data is really even feasible, especially for individuals with complex or rare medical situations.). And restrictions are limited to covered entities, e.g. doctors, pharmacies but not necessarily to those who collect data through devices, and for specific purposes only e.g. when you visit a doctor for a cold they can review your behavioral health visit information.
It raised several questions for me
• Should we adjust our relationship with privacy - should a greater societal good and transparency of personal information outweigh people’s ability to choose?
• Why is the industries’ opaqueness allowed to persist? A market where we need to consume services we don’t know the cost of seems unfair.
• The financial sector, and credit bureaus in particular, have long had individualized data with large implications for lives. Is healthcare that different, why don’t companies share more to improve the health of the overall society?
HIPAA is an acronym widely shared with consumers, generally it is thought to broadly safeguard medical data. In actuality its impact is probably more limited than people understand - ‘de identified’ data faces limited to no restrictions (though I wonder if de-identified data is really even feasible, especially for individuals with complex or rare medical situations.). And restrictions are limited to covered entities, e.g. doctors, pharmacies but not necessarily to those who collect data through devices, and for specific purposes only e.g. when you visit a doctor for a cold they can review your behavioral health visit information.
It raised several questions for me
• Should we adjust our relationship with privacy - should a greater societal good and transparency of personal information outweigh people’s ability to choose?
• Why is the industries’ opaqueness allowed to persist? A market where we need to consume services we don’t know the cost of seems unfair.
• The financial sector, and credit bureaus in particular, have long had individualized data with large implications for lives. Is healthcare that different, why don’t companies share more to improve the health of the overall society?
March 31, 2022
A fascinating piece of investigative journalism, especially in light of the Supreme Court's decision in Sorrell v. IMS Health.
Can physician and patient data, though semi-anonymized, be an essential component of free speech? It's hard to say when the medical informatics system has been monopolized by one entity and used as a weapon in an unequal information battle between individuals and big pharma.
Highly recommend this book if you want to think deeply about personal privacy, First Amendment concerns, the opioid crisis, and medical marketing practices.
Can physician and patient data, though semi-anonymized, be an essential component of free speech? It's hard to say when the medical informatics system has been monopolized by one entity and used as a weapon in an unequal information battle between individuals and big pharma.
Highly recommend this book if you want to think deeply about personal privacy, First Amendment concerns, the opioid crisis, and medical marketing practices.
February 4, 2017
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.
November 1, 2017
First, the caveat. I received this book as a Goodreads Giveaway.
There is much smoke in this book, but not much fire. It works hard to sound the alert, but even the author advises that there are no evil entities and no villain and no broad harm done, only lots of potential. Even that potential harm currently amounts to targeted advertising and the humiliation of being "outted" as having some particular medical condition. I don't want either of those, and I agree with the author's premise that it is one's own data and one's own body and health, but what is the the horror? At worst, it seems to be insurance denials and possibly employment denials.
There is much smoke in this book, but not much fire. It works hard to sound the alert, but even the author advises that there are no evil entities and no villain and no broad harm done, only lots of potential. Even that potential harm currently amounts to targeted advertising and the humiliation of being "outted" as having some particular medical condition. I don't want either of those, and I agree with the author's premise that it is one's own data and one's own body and health, but what is the the horror? At worst, it seems to be insurance denials and possibly employment denials.
February 24, 2021
We the people, are creators of meta data.
Even if anonymized, patient data need high level protection because it can be de-anonymized and used for wrongful purposes under wrong hands. Overall, owner of the data i.e. the patient should have the right to determine what is going to happen to their data. The book was a nice and short resource to learn about American healthcare data market. It includes no shocking info and basically talks about how healthcare data is bought&sold in the US market.
Even if anonymized, patient data need high level protection because it can be de-anonymized and used for wrongful purposes under wrong hands. Overall, owner of the data i.e. the patient should have the right to determine what is going to happen to their data. The book was a nice and short resource to learn about American healthcare data market. It includes no shocking info and basically talks about how healthcare data is bought&sold in the US market.
May 15, 2017
Again, this is not normally a book that I would pick up and read for fun, but it was very well written and thoroughly investigated and shed light on how our medical data is supposed to be protected instead of brokered. I never really knew that such a thing as data mining existed. It's a scary thought that our medical information is out there for anyone to get their hands on.
August 27, 2020
Such an important book on a topic that is only becoming increasingly relevant to everyone. Excellent narration and investigation, it's very clear the depths to which Tanner went to extract the insights he shares in this book. He's also very balanced in his presentation of the different perspectives on the topic.
July 7, 2022
Well written, as the author expressed realities and his and our anxieties regarding our 'not-so-anonymized-medical-data' which we cannot access unless we pay for it.
Very good journalism. As someone in this field, I've gained some insights and great amount of information to what happens at the backrooms.
Very good journalism. As someone in this field, I've gained some insights and great amount of information to what happens at the backrooms.
August 13, 2019
I won a copy of this book during a Goodreads giveaway. I am under no obligation to leave a review or rating and do so voluntarily. So that others may also enjoy this book, I am paying it forward by donating it to my local library.
March 14, 2017
Everything we do creates a trail of data, and there's usually someone making money off of analyzing it. It turns out that that's true for our personal medical records, too. Stripped of a few identifying fields, data from doctors, hospitals, and pharmacists make their way into massive databases for analysis and profit.
Theoretically, all that data should be useful for improving our health, but for-profit industry has been more effective at turning it into intelligence for marketing and sales. Tanner explores the companies that collect the data, how they get it, and what they're doing with it. The story of doctor-level prescription data and how pharmaceutical companies use(d) it to target their sales effort is particularly surprising (and big business).
The trick is that this is an industry that doesn't much care to be understood, so it's hard to get good information about it. The book ends up with more questions than answers, which seems a fair reflection of where we are today. At the end of the book, the reader has, at least, a sense of the incentives and transactions defining the current system.
From re-identification of de-identified data to the ethics of selling personal medical data for purposes that don't benefit patients, this book raises important policy questions and provides a good start toward a detailed exploration. Despite the ultimate letdown of unanswered questions, the book is a valuable addition for those interested in healthcare data or privacy policy.
Theoretically, all that data should be useful for improving our health, but for-profit industry has been more effective at turning it into intelligence for marketing and sales. Tanner explores the companies that collect the data, how they get it, and what they're doing with it. The story of doctor-level prescription data and how pharmaceutical companies use(d) it to target their sales effort is particularly surprising (and big business).
The trick is that this is an industry that doesn't much care to be understood, so it's hard to get good information about it. The book ends up with more questions than answers, which seems a fair reflection of where we are today. At the end of the book, the reader has, at least, a sense of the incentives and transactions defining the current system.
From re-identification of de-identified data to the ethics of selling personal medical data for purposes that don't benefit patients, this book raises important policy questions and provides a good start toward a detailed exploration. Despite the ultimate letdown of unanswered questions, the book is a valuable addition for those interested in healthcare data or privacy policy.
February 4, 2018
The author did not enough emphasis to the positive effects of public health research, which uses the electronic health data.
Read
March 10, 2017Read the bits on Epic
Read
March 4, 2017This is a book that was quite an eye opener. I have read in the past that data is worth money. However, this book really puts that in perspective and how our information can and is being sold. Sadly the selling of our information still happens and this book sheds light on a subject that everyone who cares(and it should be everyone who does care) about should read.
Want to read
September 29, 2016Note: I accessed a digital review copy of this book through Edelweiss.
February 14, 2017
Our Bodies, Our Data is a solid book without sensationalist language that forces one to realize the crazy discrepancy between the ease by which various commercial entities can buy/sell/trade one's medical information and the near impossibility of getting all of one's own health data together in one virtual location, whether that is a personal health record or the electronic health record for one's primary care provider.
Having grown up seeing various (always attractive) drug salespeople show up at my father's office to pitch various medications, it is rather freaky to read about the practices of pharmaceutical sales reps. Inevitably these reps knew more about how much my own physician father prescribed all sorts of medications than he knew himself. That analytical data was likely sold, bought, and traded all over for mostly commercial purposes.
The repeated instances of various researchers figuring out how to re-identify specific patients out of anonymized health data is quite frightening, but also entirely believable. With enough computing power all sorts of impossible-sounding tasks become possible. How long will it take for various criminals to engage in this kind of behavior?
I received an advance reading copy of this book. I think it is too important for me to keep to myself. I'll need to share my copy with someone.
Having grown up seeing various (always attractive) drug salespeople show up at my father's office to pitch various medications, it is rather freaky to read about the practices of pharmaceutical sales reps. Inevitably these reps knew more about how much my own physician father prescribed all sorts of medications than he knew himself. That analytical data was likely sold, bought, and traded all over for mostly commercial purposes.
The repeated instances of various researchers figuring out how to re-identify specific patients out of anonymized health data is quite frightening, but also entirely believable. With enough computing power all sorts of impossible-sounding tasks become possible. How long will it take for various criminals to engage in this kind of behavior?
I received an advance reading copy of this book. I think it is too important for me to keep to myself. I'll need to share my copy with someone.
April 12, 2023
Some good examples, but I didn’t think any of the content was revolutionary, mainly discussing well known problems but not really their solutions.
April 1, 2017
Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Data by Adam Tanner is a non-fiction book talking about how companies use big medical data. Mr. Tanner writes about business and personal data and privacy issues.
The book is a sometimes fascinating, sometimes frightening book telling how our medical records are used to analysis and profit. The data, which strips personally identifiable information (but not really) is being collected by middle men from doctors, pharmacies, hospitals and other medical professionals one comes in touch with, and is being sold.
The public reasoning that the data is being collected is to improve our health by analyzing trends and helping doctors. The data is also collected and sold for analysis by marketing companies in order to help their bottom lines and this is where most people have an issue.
The pharmaceutical industry doesn’t really care if people have an issue with their use of the data, even though it is possible to de-identified the data (attributing it to a specific person after all personal information has been stripped out). The book asks a lot of questions but the answers are vague at best as this sensitive data is being sold, analyzed and re-sold at lightning speed.
Mr. Tanner wrote a well-researched and very interesting book which raises important issues. The answers might lie with our policy makers and I could only hope they’ll read it.
For more reviews and bookish posts please visit my bookish blog at: http://www.ManOfLaBook.com
The book is a sometimes fascinating, sometimes frightening book telling how our medical records are used to analysis and profit. The data, which strips personally identifiable information (but not really) is being collected by middle men from doctors, pharmacies, hospitals and other medical professionals one comes in touch with, and is being sold.
The public reasoning that the data is being collected is to improve our health by analyzing trends and helping doctors. The data is also collected and sold for analysis by marketing companies in order to help their bottom lines and this is where most people have an issue.
The pharmaceutical industry doesn’t really care if people have an issue with their use of the data, even though it is possible to de-identified the data (attributing it to a specific person after all personal information has been stripped out). The book asks a lot of questions but the answers are vague at best as this sensitive data is being sold, analyzed and re-sold at lightning speed.
Mr. Tanner wrote a well-researched and very interesting book which raises important issues. The answers might lie with our policy makers and I could only hope they’ll read it.
For more reviews and bookish posts please visit my bookish blog at: http://www.ManOfLaBook.com
April 29, 2017
(Note: I received a free copy of this book in exchange for an honest online review)
This book is about the industry that collects and sells “anonymized” medical records and, to a lesser extent, is about your private medical records.
The highly profitable business of collecting and selling of “anonymized” medical records (e.g. prescriptions filled at drugstores, records from doctors offices, test results from medical lab) is perfectly legal as long as the process complies with legislation such as HIPAA (Health Insurance Portability and Accountability Act of 1996). To comply with the law, data records must be “anonymized” or “de-identified”, which means that personally identifiable information is removed (but the name of the physician may or may not be removed). However the book describes recent studies by cybersecurity experts which have demonstrated that, with today's powerful computers, it is a straightforward task to “re-identify” the data.
A drawback of the book, in my opinion, is that there are no figures or tables. Because the book contains so much of information, some kind of graphical display would help immensely. Possibly a timeline showing companies, key events, size of data bases, growth of industry in dollars, etc would be sufficient. Or perhaps some kind of flowchart annotated to show which companies are where within the flow of data. For readers like me with soft memories, any figure or table that might help to absorb and review all the information would be better than none at all.
In his Conclusion, the author writes,
“ … what we need in the big health-data bazaar is not so complicated: more transparency, more consent, and more control.”
but he doesn't suggest how to achieve those goals. However, a comment in the second to last chapter, may actually provide more insight into the the source of the problem:
“Ironically, one reason health-related companies get away with obscuring what they do with medical information is that patients are not treated as their customers.”
I would recommend this book to everyone. It is very readable, informative, and deals with a topic important to everyone today.
This book is about the industry that collects and sells “anonymized” medical records and, to a lesser extent, is about your private medical records.
The highly profitable business of collecting and selling of “anonymized” medical records (e.g. prescriptions filled at drugstores, records from doctors offices, test results from medical lab) is perfectly legal as long as the process complies with legislation such as HIPAA (Health Insurance Portability and Accountability Act of 1996). To comply with the law, data records must be “anonymized” or “de-identified”, which means that personally identifiable information is removed (but the name of the physician may or may not be removed). However the book describes recent studies by cybersecurity experts which have demonstrated that, with today's powerful computers, it is a straightforward task to “re-identify” the data.
A drawback of the book, in my opinion, is that there are no figures or tables. Because the book contains so much of information, some kind of graphical display would help immensely. Possibly a timeline showing companies, key events, size of data bases, growth of industry in dollars, etc would be sufficient. Or perhaps some kind of flowchart annotated to show which companies are where within the flow of data. For readers like me with soft memories, any figure or table that might help to absorb and review all the information would be better than none at all.
In his Conclusion, the author writes,
“ … what we need in the big health-data bazaar is not so complicated: more transparency, more consent, and more control.”
but he doesn't suggest how to achieve those goals. However, a comment in the second to last chapter, may actually provide more insight into the the source of the problem:
“Ironically, one reason health-related companies get away with obscuring what they do with medical information is that patients are not treated as their customers.”
I would recommend this book to everyone. It is very readable, informative, and deals with a topic important to everyone today.
to-maybe-read
April 18, 2017Disclosure: ARC received from Edelweiss & publisher in exchange for an honest review. (They may regret this.) Any and all quotes were taken from an advanced edition subject to change in the final edition.
Displaying 1 - 20 of 20 reviews