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1-Page PDF Summary of Our Bodies, Our Data

Data privacy is a hot topic these days, given the ubiquitous tracking that follows you everywhere on the web. You might want to know that your medical data isn't as private as you might think. Your healthcare providers—pharmacy, hospital, health insurer, lab test provider, and genome sequencers—are continuously selling your medical data to data brokers. Data brokers compile this information into a patient record, which is then resold with records of hundreds of millions of other patients for marketing and industry analysis purposes.

Our Bodies, Our Data is a useful survey of the medical data industry and its current worrisome capabilities. You’ll learn how the industry progressively sold more and more data, how patient records are compiled, and why there’s a market for this data.

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Simply picture your entire medical record owned by multiple third parties, just with your name and SSN replaced by a unique ID—this reflects reality.

The broker then 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 (eg pharma companies) are interested not in you as an individual but how you fit into general trends—what drugs you're taking or switching to, what drugs your doctors are prescribing compared to other doctors, how disease prevalence varies by location.

But there is 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 or see a unique combination of doctors, or have any other public health-related information (for example, a Twitter post about seeing your doctor on a particular day, or 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, it claims 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 sensitive to future opportunities to opt out, should you so choose.

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PDF Summary History of Medical Data Gathering

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  • Generally it tries to get data for free, arguing the data will help science. Otherwise they give $50 a month for this data.

IMS starts the Drug Distribution Data service which merges data from drug wholesalers and pharma to determine total sales by salesperson territories.

  • Weakness: misses traveling prescriptions (script written in one territory and filled in another) and doesn’t have per-doctor granularity

1978: McKesson starts Pharmaceutical Data Services, which sends surveys to 100k’s of doctors.

  • In the early 1980s, PDS starts buying doctor-identified prescriptions from pharmacies.
  • PDS generates physician profiles by matching doctor prescribing data with prescription filling data, to get real sales, not just prescriptions.

Patient dossiers start to be compiled about distinct patients.

  • Anonymized dossiers compile data from multiple data sources.
  • IMS Health (now called IQVIA) and Symphony Health are major players.
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PDF Summary Sources of Medical Data

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  • Employers
    • Can sell insurance claims to data miners
  • Electronic Medical Records
    • Allscripts provides data to IMS Health, receiving $30 million a year in sales
    • GE Healthcare sells data from its Centricity EMR.
  • Data Brokers
    • LexisNexis sells medical claims from many payers, covering 250 million patients.
    • Non-medical data brokers like Experian, Epsilon, and Acxiom sell to medical data miners. These brokers aren’t subject to HIPAA and can cell non-anonymized records.
  • Public Data on the Internet. Sources include:
    • Social media: miners monitor Facebook and Twitter for mentions of medication, ailments, and keywords like “diagnosed with.”
    • Review sites: for doctors, offices
    • Location and exercise data from devices
    • Real estate transactions
    • Forum discussions
  • Proprietary Data—while these haven’t been confirmed to be currently under sale, be aware that in the future they could be.
    • Any trackable activity online, including Google searches, Youtube videos watched, ads clicked
    • Profiles and surveys, like on medical websites such as webMD
    • Data collected by medical devices, such as...
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PDF Summary Uses of Medical Data

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  • Researchers
    • Study long-term outcomes of different treatments
    • Study the effect of regulation on health outcomes
    • Public health studies, such as epidemics, drug use, health trends
  • Employers
    • Study patient and spend data to figure out how to reduce costs
    • Benchmark their costs against other employers
  • Healthcare Providers
    • Compare cost and quality with competition
    • Improve care internally
    • Market to recruit new patients
  • Payers
    • Find billing fraud
  • Insurers, Underwriters
    • Get patient consent for insurer to access named data on prescriptions, tests
    • Insurers can share info with each other through Medical Information Bureau
  • Attorneys
    • Contact patients for class action lawsuits
  • Advertising Platforms
    • Sell data to Google or Facebook to allow more precise ad targeting of their users
  • More controversial or illegal uses—not currently done publicly, but are notable risks in an environment with such granular and plentiful data.
    • Employers can discriminate against people with higher healthcare costs
    • Lenders may charge higher interest to people with specific...
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PDF Summary Notable Players in Medical Data

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  • Was purchased in 1988 by IMS execs Evans and Dennis Turner
    • Afterward, pushed into doctor-identified information, getting accurate data on prescriptions and sales per doctor
    • Renames as Source International
  • Was acquired by Symphony in 2012

Verispan

  • Was created by McKesson and Quintiles in 2002
  • Got annual revenue of $100 million, with its biggest customer paying $6 million per year
  • Was acquired by SDI, then acquired by IMS

ArcLight

  • Started by Krieger from Cardinal Health. It challenged IMS with a few benefits:
    • It provided data reports more quickly
    • It gave large pharmacies equity in ArcLight to avoid upfront fees
    • Walmart stopped working with IMS because competitors could figure out individual store revenue numbers from IMS reports
  • ArcLight went out of business in the 2000s a few years after trying to create anonymized patient dossiers. It had difficulty matching joining anonymized data.

Other data brokers and companies involved with medical data:

  • Cardinal Health, ScriptLINE
  • Symphony Health
  • MedStat
    • Sold to Thompson in 1994 for $339 million
    • Then sold in 2012 for $1.25...
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PDF Summary The Forces For and Against Medical Data

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  • Negative public sentiment in a few dimensions:
    • General fear of privacy invasion
      • Korea has fought against the sale of anonymized data
      • Some patients ask, “If I pay you cash, will you keep my medical records private?”
    • Fear of being discriminated against using your medical record, resulting in:
      • Higher rates for life, health insurance
      • Job rejection
      • Blackmail
    • Providers feel manipulated by being tracked for their prescribing behavior.
      • Increasingly, providers are refusing to see salespeople
  • Regulatory changes
    • Gifts to doctors from pharma are now largely prohibited.
      • Current guidelines are for gifts not to exceed $100, and they should be medically related (such as stethoscopes, not golf trips).
    • Some states are outlawing the use of prescription data for marketing.
      • For example, in New Hampshire, Vermont, and Maine.
      • But this was struck down by the Supreme Court, which hesitated to bar pharma but not researchers from accessing doctor-identified data.
    • The FDA is clamping down on me-too drugs, which will decrease the marketing...
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PDF Summary Miscellaneous Points

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  • HIPAA allows any provider to view the whole EMR of a patient.
    • This has caused some consternation about being totally truthful with doctor.
  • De-anonymization basically does a cryptographic hash of personal information, such as name, birth date, age, and location.
  • It’s not illegal to re-identify anonymized data, though it may be a breach of contract.
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