Incorporating Data Visitation language into an Informed Consent Form (ICF) requires clear, non-technical language that explains the concept and, importantly, how it benefits the participant by protecting their privacy. This document contains instructions and helpful information on how to do so including proposed language for additions to the ICF, structured to fit within a standard ICF format for two sections: Confidentiality and  Data Handling. When re-using, remember to adapt this language to the specific details of your study, including the type of data, where it’s stored, and the specific platform used.

This output provides practical guidance on incorporating Data Visitation language into an Informed Consent Form (ICF) providing utility for those anticipating implementing data visitation as well as an additional layer of information at the time of informed consent for subjects whose personal health information (PHI) or other personally identifying information (PII) may be managed by such systems. 

The “Adding Data Visitation Language to ICF’s” output aligns with SDG 9: [to] Build resilient infrastructure, promote inclusive and sustainable industrialization and foster innovation. Particularly, 9.5  to “enhance scientific research, upgrade the technological capabilities of industrial sectors in all countries”  offering practical guidance in the context of  informed consent for those anticipating management of consented data in data visitation systems.

Please cite this document as: P. Buendia, S. Kim. “Adding Data Visitation language to ICFs.” DV4RDA Project of the  EOSC-Future/RDA Artificial Intelligence and Data Visitation Working Group (AIDV-WG). Research Data Alliance.  November 14, 2025. DOI: 10.15497/RDA00143.