By MATTHEW HOLT
I am delving into two ongoing controversies that may not be on everyone’s radar, but they shed light on the power dynamics and complexities in American health care. This piece focuses on data nerds, aiming to help non-nerds grasp the importance of the topic.
In 1996, the HIPAA law was passed to enhance health insurance portability, although it fell short of its goal. This law included accountability measures and privacy regulations, with the intention of granting patients access to their health data. Unfortunately, many health systems have failed to instill trust among patients, despite receiving substantial public subsidies to implement electronic medical records (EMRs).
Epic Systems, a major EMR vendor, has been criticized for monopolistic behavior, but continues to dominate the market. The 21st Century Cures Act in 2016 mandated that providers must make data available in a modern format, leading to the emergence of various tech companies extracting data from hospital APIs.
Recently, one such company, Particle Health, was cut off from the Carequality Network for allegedly obtaining data without a valid “treatment” reason. This sparked a public dispute involving Particle, Michael Marchant from UC Davis Health, and Epic Systems.
Epic released a letter addressing allegations made by Particle, naming four companies that had been using Particle’s data in a manner deemed unfavorable. While some companies claim to use the data for treatment purposes, others are focused on enabling patient access to their own health information.
The controversy highlights the challenges in data access and usage within the healthcare system. The refusal to provide data for patient requests and the alleged restrictions on third parties reviewing data raise concerns about transparency and accountability within the industry.
Overall, the unfolding events underscore the intricate web of interests and power dynamics that shape the healthcare data landscape in America.
