Illinois lawmakers have taken a significant step toward safeguarding personal health information with the introduction of House Bill 3494, known as the Protect Health Data Privacy Act. Proposed by Representative Ann M. Williams on March 19, 2025, this legislation aims to establish stringent regulations on how health data is collected, shared, and stored by various entities.

The bill mandates that regulated entities disclose a clear health data privacy policy, outlining the specific circumstances under which health data may be collected or shared. Notably, it prohibits the sale of individual health data without obtaining explicit consent from the individual, ensuring that individuals are fully informed about how their data is being used. This consent must include detailed information and a copy must be provided to the individual, with records retained for six years.

In addition to consent requirements, the bill empowers individuals with rights to confirm whether their health data is being processed and to request deletion of their data. It also prohibits discriminatory practices against individuals who choose not to consent to data processing. The legislation provides a pathway for individuals to seek legal recourse in state or federal courts if their rights are violated, and it grants the Attorney General the authority to enforce these provisions under the Consumer Fraud and Deceptive Business Practices Act.

The introduction of HB3494 has sparked discussions among lawmakers and stakeholders about the balance between data privacy and the operational needs of health-related businesses. Supporters argue that the bill is essential for protecting personal privacy in an increasingly digital world, while opponents express concerns about the potential burden on healthcare providers and the implications for data-driven healthcare innovations.

As the bill progresses through the legislative process, its implications could reshape how health data is managed in Illinois, setting a precedent for other states to follow. With growing public awareness of data privacy issues, the Protect Health Data Privacy Act could significantly impact the relationship between individuals and healthcare entities, fostering a culture of transparency and trust in health data management.