Take a look at what the leading data broker, IQVIA (with a market cap of $20 billion), boasts to have:
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 removal of 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.
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...
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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:
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. This data helps firms target advertising and sales to regions and seasons.
Pharma research firm Davee, Koehnlein and Keating uses receipts from US pharmacies and manufacturers to estimate pharma market sizes by category.
1947: Graduate student Gosselin asks drugstores for permission to copy their prescription records. Pharma companies get interested in this service to get precise sales and compare their presence vs. the competition. He starts a company in 1952 to send bimonthly nationwide pharmacy surveys. He eventually asks physicians to share their prescription writing to correlate physician attributes with specific drug sales.
1957: IMS acquires purchase data from wholesale pharmacies to estimate market sizes in Germany.
1960s: IMS begins asking doctors to share what they prescribe for...
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:
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.
The book describes the following major players in the medical data industry.
IMS Health (now known as IQVIA)
PDS (Pharmaceutical Data Services), Source International
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Here are forces that have propelled patient data selling over the past decades:
Here are forces that have counteracted the sale of patient data:
Here is a collection of notes about the healthcare industry that frame strategy.