Following the enactment of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), patient privacy cemented itself among the foremost concerns of healthcare providers. This focus on patient privacy was only amplified after Europe passed its own, stronger set of regulations under The General Data Protection Regulation (GDPR). These well-meaning regulations have unintentionally obstructed medical research.
Researchers have struggled to gain access to sufficiently diverse patient data in a sea of varying complex legislations, often forcing them to perform analyses on relatively homogenous datasets. This means that the results often don’t generalize to the wider population, because the data being tested is unrepresentative of various demographics.
