Health Sector Innovation through Data Sharing: The Role of Government
By: Limor Shmerling Magazanik and Luke Schwartz
- Enhanced data sharing and collaboration in the health sector foster innovation, improve outcomes, and facilitate evidence-based decision-making. It is imperative to prioritize privacy and security when accessing sensitive health data, with governments assuming a crucial role in creating policies that balance data access with privacy protection. The United States and Israel have taken differing approaches to achieve this end, including mandates, incentive-based programs, and entirely voluntary approaches.
- In the US, many federal agencies regulate health data sharing, while Israel's centralized public health system, managed by the Ministry of Health, facilitates effective health data research and innovation.
- US federal legislation like HITECH and the 21st Century Cures Act establish incentives and requirements for promoting data interoperability. There are also state-level initiatives.
- Israeli regulatory mandates have led healthcare providers to prioritize data utilization for research, efficiency improvement, and enhanced medical treatment, however, the health data ecosystem has historically been siloed between HMOs which has made coordinated care complicated.
- In Israel, access to quality nationwide health data for non-HMO researchers is made possible through using the Timna national platform. Israel has strong privacy protection laws and regulations governing the secondary use of health data for research and access by private sector entities, ensuring data security and confidentiality. The US has privacy laws, such as HIPAA, that are generally more limited in scope than Israeli privacy regulations.
- Both countries are gradually adapting Fast Healthcare Interoperability Resources (FHIR), an API designed to standardize and facilitate the exchange of health information, to ease data interoperability.
- Moving forward, the US has the opportunity to expand and streamline data access to researchers while ensuring privacy and security. While robust regulatory environments and frameworks like FHIR facilitate progress in health data sharing and innovation, they should be paired with comprehensive privacy legislation to ensure data sharing and use that prioritizes patient autonomy.
- Relatedly, Israel has proposed legislation that would increase patient autonomy through data portability, while enhancing the usefulness of health data for research and care.
Limor Shmerling Magaznik is a visiting scholar with the Sanford Cyber Policy Program. Luke Schwartz was a researcher at Duke University’s Technology Policy Lab.
The authors would like to thank Professor Campbell Tucker and Professor David Hoffman for their feedback on the report.