Facilitating health data sharing across diverse practices and communities

Area of Science:

• Health Informatics
• Translational Health Sciences
• Community-Based Participatory Research

Background:

• Engaging rural and underserved populations in health research is crucial.
• These populations often face marginalization and have unique needs.
• Electronic health data sharing networks can facilitate this engagement.

Purpose of the Study:

• To assess the feasibility and barriers of developing data sharing networks.
• To understand diverse approaches and expectations for data sharing among practices and communities.
• To inform the design of flexible, community-based data sharing systems.

Main Methods:

• Conducted site visits to ten practices and communities.
• Assessed the feasibility and barriers related to developing data sharing networks.
• Analyzed diverse approaches and expectations for health data sharing.

Main Results:

• Practices and communities exhibited highly varied approaches and expectations for data sharing.
• Significant differences in perspectives were identified across sites.
• Understanding these diverse views is essential for successful implementation.

Conclusions:

• Informaticists must account for diverse community and practice views to foster data sharing acceptance.
• Flexible system design is necessary for community-based data sharing networks.
• Tailored approaches are needed to effectively engage marginalized populations in health research.