Developing Governance for Federated Community-based EHR Data Sharing.

Area of Science:

• Health Informatics
• Primary Care Research
• Data Governance

Background:

• Translational research requires robust data sharing between scientific discovery and primary care.
• Community-based primary care practices need secure methods for sharing electronic health record (EHR) data.
• Existing data sharing infrastructures often lack adequate governance for primary care settings.

Purpose of the Study:

• To develop and implement a set of governance requirements for a pilot data sharing program (Data QUEST) among community-based primary care practices.
• To establish a technical infrastructure supporting secure EHR data sharing.
• To ensure data security and maintain local control for participating primary care organizations.

Main Methods:

• Conducted interviews and collaborative sessions with partner organizations to elicit governance needs.
• Developed a technical infrastructure for electronic health record data sharing.
• Defined and implemented specific data sharing governance requirements based on partner feedback.

Main Results:

• Established a pilot program (Data QUEST) for community-based primary care data sharing.
• Developed four key governance recommendations prioritizing data security and local control:
• 1. Practices can terminate network links; only approved data exits.
• 2. Practices must approve or reject each data query.
• 3. Adherence to local processes, resources, and infrastructure is mandatory.
• 4. Practices can be seamlessly added or removed from the network.

Conclusions:

• The Data QUEST pilot project successfully established a framework for secure EHR data sharing in primary care.
• The developed governance requirements empower primary care practices with control over their data, fostering trust and participation.
• This model supports bi-directional translational research by enabling safe and effective data exchange between primary care and research communities.