Best Practices:

• If you are still engaged in data collection, consider modifying the consent form to allow data sharing without restrictions, though this will not apply to already consented individuals
• Identify databases for sharing that can meet your necessary restrictions-If you will be sharing directly from your own cloud-based platform, develop a data use agreement that outlines the restrictions

Things to Avoid:

• Avoid using a consent form with more restrictive sharing and re-use than needed for your project

Value Set Definitions: 

• Low: The informed consent does not allow any data sharing.
• Medium: The informed consent allows data sharing under restricted conditions.
• High: The informed consent allows broad and open data sharing.

Value of Use Case Example:

NA - Jordan is just starting her project and can work prospectively to ensure that the consent allows the degree of sharing that she wishes for, which should be “High.”

Discussion of Use Case:

Whether or not the informed consent allows data sharing likely does not have an impact on the use of cloud-based resources for analysis and storage of the data if Jordan does not wish to share the data. However, given that Jordan would like to be able to share data, it is critical that they ensure that the consent allows for broad data sharing.