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Our Bodies, Our Data by Adam Tanner.
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Take a look at what the leading data broker, IQVIA (with a market cap of $20 billion), boasts to have:

  • 530 million non-identified patient records
  • 85% of global pharma sales tracked
  • 400,000 sources of social media
  • 15 million healthcare professionals

It's no exaggeration to assume that all your health providers are reselling all 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 is able to sell medical data. Reselling data is a high-margin business, and thus tantalizing for managers to add to their bottom line. Companies you interact with that sell your data include pharmacies, medical providers, and insurers.

The only restriction they have by HIPAA law is to remove identifying information like your name, address, and Social Security Number, instead creating a unique personal code for you.

The...

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Our Bodies, Our Data Summary Our Bodies, Our Data Guide 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....

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Our Bodies, Our Data Summary Our Bodies, Our Data Guide 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...

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Our Bodies, Our Data Summary Our Bodies, Our Data Guide 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...

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Our Bodies, Our Data Summary Our Bodies, Our Data Guide 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
  • ...

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Our Bodies, Our Data Summary Our Bodies, Our Data Guide 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...

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Our Bodies, Our Data Summary Our Bodies, Our Data Guide 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...

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Table of Contents

  • 1-Page Summary
  • History of Medical Data Gathering
  • Sources of Medical Data
  • Uses of Medical Data
  • Notable Players in Medical Data
  • The Forces For and Against Medical Data
  • Miscellaneous Points