What you need to know:
Medical data, including hospital/doctor records, drug prescriptions, insurance claims and laboratory tests are often shared by healthcare providers like health systems, pharmacies, insurers and other medical institutions.
Often this data gets into the hands of data brokers who pool and aggregate these data points and in turn sell it to (for example) the pharmaceutical industry for research purposes, to better tailor advertising campaigns to promote a new drug or to even analyze and influence specific doctors in prescribing their drugs. This data can result in big profits for these companies, with no inherit benefit to you.
Many big tech companies are also entering the healthcare arena in a variety of ways including creating health wearable devices, developing tech-enabled tools and analytics for healthcare providers and even starting their own private healthcare service. New legislation has also recently passed which allows individuals to use phone apps of their choice to access their health data directly from health providers. This opens the door for tech companies (big and small) to develop apps that access and store troves of health data.
This venture of big tech into healthcare puts medical data in the hands of companies that generally make a living from monetizing data and which are not limited by the same federal patient privacy restrictions that govern health providers and insurers.
By law medical data shared by healthcare providers to third party companies is required to be “anonymized”. However with the advancement of data mining techniques, when combined with other sources of data, your data can be re-identified.
Finally, the trend towards personalized medicine, which aims toward harnessing genomics and technology to customize healthcare will increasingly add DNA to the pool of medical data collected and shared with third parties. Many experts believe there is simply no way to anonymize genomic data while still keeping it useful for researchers.
Data brokers make money from medical records
Medical data can mean big money for healthcare providers
Learn about Henrietta Lacks, a woman whose unique cells were cultured without her permission and have been commercialized for profit by medical researchers
Recent legislation on medical data sharing requirements has raised privacy concerns
The growth of personalized medicine has also raised privacy concerns