Designing for data sharing: Considerations for advancing health equity in data management and dissemination

Area of Science:

• Implementation Science
• Public Health Research
• Social and Behavioral Health

Background:

• Data sharing accelerates innovation and public health advancements.
• Equitable data sharing is crucial for health equity.
• Implementation science research requires specific considerations for data sharing.

Purpose of the Study:

• To identify and discuss factors for designing equitable data sharing in research.
• To develop a framework for equitable data sharing, emphasizing implementation science and health equity.
• To operationalize key considerations for inclusive data sharing processes.

Main Methods:

• Convened diverse experts including scientists, practitioners, and community partners.
• Conducted three interactive workshops (May-June 2022).
• Identified and operationalized seven key considerations for equitable data sharing.

Main Results:

• Developed a framework for equitable data sharing, defining it as an inclusive process.
• Key components for health equity include elevating data sharing, diverse perspectives, and partner engagement.
• Considerations encompass ethics, history, and benefits for all involved or impacted partners.

Conclusions:

• Equitable data sharing must be a core research activity.
• Meaningful engagement of diverse partners throughout the project lifecycle is essential.
• Continued consideration of positive and adverse impacts on diverse beneficiaries is critical.