Consent

We encourage depositors to design their studies or programs with secondary use in mind.  This can be done when creating the participant/client consent forms at the project design phase. Within the consent form, there should be permissive data sharing language.

At the very least, consent should not preclude data sharing.  In some consent forms, you may encounter language that speaks about the destruction of data or that only the research team or a specific organization will have access to the data.  This type of language can remove the potential to share data, which should be avoided.

We do suggest that participant/client consent form should include provisions for data sharing and future use.  Ask the participant/client explicitly if there data can be used in the future, or if they can be contacted for future use.

It is also good practice to incorporate secondary data use into proposals and grants.  This can mean allotting money to data management so that data can prepared and cleaned in a manner that facilitates secondary use.  Not only does this ensure that data is available for use by other researchers and organizations, but it always allows the primary data producers to return to their data, and fully understand what they have done even if it has been years since they last used their data.

 

To find out more, please contact us at data@policywise.com.