Data management and sharing policy: the first step towards promoting data sharing.

Area of Science:

• Health Services Research
• Data Science
• Global Health

Background:

• Funders, regulators, and journals advocate for widespread sharing of de-identified individual-level health data.
• Despite expectations, the actual volume of shared health data remains low.
• Researchers are hesitant to share data without assurance of its quality, reliability, and appropriate use.

Purpose of the Study:

• To advocate for institutional data management and sharing policies as a primary strategy to promote data sharing.
• To outline the essential components of an effective data management and sharing policy.
• To provide recommendations tailored for low- and middle-income country contexts.

Main Methods:

• The study outlines the elements of a data management and sharing policy.
• Recommendations are based on practical experience with large clinical trials in low- and middle-income countries.
• Empirical research on data sharing practices and data management education informed the policy recommendations.

Main Results:

• A well-defined data management and sharing policy is the foundational step for encouraging data sharing.
• Policies should encompass institutional aims, data management procedures, sharing models, consent, and cost recovery.
• Such policies can maximize data utility and safeguard institutional interests.

Conclusions:

• Establishing institutional, departmental, or group data management and sharing policies is the first critical step towards promoting wider data sharing.
• Policies provide a framework for ensuring data quality, appropriate use, and institutional alignment.
• This approach is particularly relevant for enhancing data sharing in low- and middle-income countries.