Book SummaryOur Bodies, Our Data, by Adam Tanner

1-Page Summary1-Page Book Summary of Our Bodies, Our Data

Your medical data isn’t as private as you might think. Your healthcare providers—from your pharmacy to your health insurer—sell your medical data to data brokers, who compile and sell hundreds of millions of patient records for marketing and industry analysis purposes. In Our Bodies, Our Data (2017), Adam Tanner surveys the medical data industry and its worrisome capabilities.

Tanner is a journalist and lecturer who has worked at Harvard as an associate and fellow. He spent over a decade as a Reuters correspondent, has appeared on networks like CNN, NPR, and the BBC, has written for publications like Scientific American, Fortune, and MIT Technology Review, and is the author of What Stays in Vegas.

In our guide, we’ll explore the medical data industry, including its history. We’ll look at the sources data miners draw from, how the data is used, and who uses it. Finally, we’ll look at the different forces that propel the medical data industry, as well as the forces that oppose it.

Your Medical Data Is Bought and Sold

According to Tanner, medical data mining and selling has become a profitable industry. What we think are private medical records are actually being compiled and sold for marketing and commercial purposes. For example, leading data broker IQVIA (valued at $20 billion as of the book’s publication) boasts having 530 million non-identified patient records, 85% of pharma sales tracked, 400,000 sources of social media, and 15 million healthcare professionals.

It's no exaggeration to assume that all your health providers are reselling your medical data to brokers like IQVIA. Nearly all information is sold—your disease diagnoses, what drugs you take for which conditions, what your most recent lab tests say, who your doctors are, and when you saw them. Every vendor you interact with to get medical service—including pharmacies, medical providers, and insurers—is able to sell medical data. Reselling data is a high-margin business, and thus tantalizing for managers to add to their bottom line.

The only restriction companies have under HIPAA law is to remove identifying information like your name, address, and Social Security Number, instead creating a unique personal code for you. However, removing your name from your record is little barrier. With so much data and this unique code, the data broker compiles data streams into a new patient record. Any new data the broker receives is associated with your personal record, making it more and more identifiable. Your entire medical record is virtually owned by multiple third parties, just with your name and SSN replaced by a unique ID.

How Your Data Is Used

The broker resells your health record, along with those of hundreds of millions of other patients, for marketing, industry analysis, and research purposes. Note that in large part, the data buyers (for example, pharma companies) are interested not in you as an individual but in how you fit into general trends—what drugs you're taking or switching to, what drugs your doctors are prescribing, and how disease prevalence varies by location.

But there’s always a risk of a data leak. And given how much information your patient record has, it can likely quickly be matched back to you, especially if you have a rare condition, see a unique combination of doctors, or have any other public health-related information (for example, public exercise data from health devices).

In some sense, it’s already too late to opt out or take back your data. Data brokers say your records can’t be traced back to you, so even if you wanted to opt out, they claim to have no way to tell which data to delete. But at a minimum, you should be aware of the extent to which your data is shared and be more mindful of future opportunities to opt out.

History of Medical Data Gathering

Tanner provides a history of how resold medical data became increasingly personal and detailed. The overall trend over the past decades has been toward 1) more granular data consisting of more detail about a patient’s history, 2) data linked to distinct providers and patients, and 3) piecing together large datasets longitudinally across time. For example, wholesalers and pharmacies started by selling bulk sales data. This allowed the study of pharmaceutical company market share, overall and by territory.

Later, prescription data with doctor identification allowed data companies to create profiles on the prescribing habits of individual doctors. And eventually, anonymized patient data from wide sources were linked together to get patient dossiers.

A Brief History

In the 1930s, Arthur Charles Nielsen, founder of the A.C. Nielsen Company, paid pharmacies to share wholesale invoices. Staffers also counted products on shelves to monitor and estimate sales by region and season. Pharma research firm Davee, Koehnlein and Keating used receipts from US pharmacies and manufacturers to estimate pharma market sizes by category.

In 1947, graduate student Ray Gosselin asked drugstores for permission to copy their prescription records for his research. He started a company in 1952 to send bimonthly surveys to pharmacies nationwide and to collect prescription data from physicians, which allowed pharma companies to track sales and compare their market presence against the competition. (Note that drug sales are distinct from drug prescriptions.)

Market research company IMS Health, founded in the mid-1950s, acquired purchase data from wholesale pharmacies to estimate market sizes in Germany and began began asking doctors to share what they prescribed for different diagnoses. Generally, IMS tried to get data for free, arguing the data would help science. Otherwise, they gave $50 a month for this data. IMS later started the...

Our Bodies, Our Data Summary History of Medical Data Gathering

Our Bodies, Our Data contains a useful history of how resold medical data became increasingly personal and detailed.

The overall trend over the past decades is toward 1) more granular data consisting of more detail about a patient’s history, 2) data linked to distinct providers and patients, and 3) piecing together large datasets longitudinally across time. A few examples:

• Wholesalers and pharmacies started by selling bulk sales data. This allowed study of pharmaceutical company market share, overall and by territory.
• Prescription data with doctor identification allowed data companies to create profiles on the prescribing habits of individual doctors.
• Anonymized patient data from wide sources were linked together to get patient dossiers.

Brief History

1930s: Nielsen pays pharmacies to share wholesale invoices every 2 months to project overall US sales. Staffers also count products on shelves to monitor sales rates....

Our Bodies, Our Data Summary Sources of Medical Data

Every vendor you interact with to get medical service is able to sell medical data. Reselling data is a high-margin business, and thus tantalizing for managers to add to their bottom line. Our Bodies, Our Data describes the following data sources:

• Pharmacies
  • At the beginning, pharmacies were provided free software by McKesson (a drug wholesaler) in exchange for bulk sales data.
  • In the 1980s, IMS paid $50 per month for the pharmacy to load its prescription files onto a floppy disk.
  • Now pharmacies receive $0.01 per script.
• Clearinghouses and Pharmacy Benefit Managers
  • Their normal function is to route claims from pharmacy or doctor to the payer (usually an insurance company).
• Drug Wholesalers
  • Their normal function is to provide pharmacies with services to maximize reimbursements.
• Medical Providers
  • In the 1960s, IMS asked doctors to complete surveys on prescriptions for different illnesses.
  • PDS sent...

Our Bodies, Our Data Summary Uses of Medical Data

What is enabled by having hundreds of millions of patient records?

Many pharma business decisions can be empowered by granular data on which patients take which drugs in which locations. Research studies are also empowered by large datasets.

The risk is that more unsavory, discriminatory uses can arise.

Here’s an array of how different types of firms can use medical data for their own purposes.

• Pharma Companies
  • Empower their salesforce to market drugs to more susceptible doctors
    • They can get fast feedback within weeks on whether their efforts on greasing doctors are working.
    • Large pharma companies pay $10-40 million per year for IMS Health data, consulting, and services.
  • Understand their competition and breakdown of market share
  • Understand patient behaviors:
    • Persistency (how long they keep a drug)
    • Compliance (how often they fill a prescription)
    • Switching behavior and what specific drugs they switch to
    • Concomitance (other drugs patient takes)
  • Predict which drugs...

Our Bodies, Our Data Summary Notable Players in Medical Data

The book describes the following major players in the medical data industry.

IMS Health (now known as IQVIA)

• Founded by a German man, L.W. Frohlich.
  • He had a medical advertising agency, LW Frohlich & Co.
  • He then partnered with Arthur Sackler, at another ad agency, to split the business between competing pharma companies.
  • Frohlich developed new marketing practices for pharma, like sending telegrams to wholesalers to announce the new drug [restricted term]. He also developed direct mail to doctors.
  • As an advertiser, it was difficult to prove the effect of marketing on their clients’ bottom line, so Frohlich created Intercontinental Medical Statistics (IMS) with David Dubow to research market share, then use this to inform ad clients.
  • Frohlich died in 1971. Sackler’s brothers inherit the majority of IMS through a tontine. Some suspect Arthur Sackler was the originator of IMS and put Frohlich as its figurehead.
• IMS Health has the popular Drug Distribution Data service.
• Was acquired for $1.7 billion in 1988, under the same umbrella as AC Nielsen.
• In 1993, it started providing doctor profiles with its Xponent service
• It...

Our Bodies, Our Data Summary The Forces For and Against Medical Data

Propelling Forces for Patient Data Selling

Here are forces that have propelled patient data selling over the past decades:

• A general public indifference about privacy
  • A majority of people do not opt out of anonymized sharing when given the option.
  • More recently, sites like Facebook, Google train people to expect a lack of privacy in their everyday life.
• Data sources (such as pharmacies and hospitals) want to improve their earnings numbers, and selling data is a high-margin boost to their bottom line.
• HIPAA only protects health data with identifiable info and only applies to providers, payers, and clearinghouses (so-called “covered entities”).
  • Other parties can bypass this with loophole
• Digitization of healthcare info makes transfer of patient data easier than mailing in receipts like in olden days.
• Medical data is sold for its purported benefits about helping people.
  • Manufacturers believe their drugs are good, so selling their drugs more effectively can only help more people.
  • Pharma salespeople believe they’re educating...

Our Bodies, Our Data Summary Miscellaneous Points

Here is a collection of notes about the healthcare industry that frame strategy.

• Physicians generally resist trends that threaten their dominance.
  • They resisted computerized patient data, since this would weaken the exclusive control they had over patient data.
• The fragmentation of healthcare across providers and EMRs makes it hard for any single party to force cross...