Clinical Data

Data about people participating in research studies as subjects, and data collected during their clinical care, should be shared with care. While funders, publishers, and research communities encourage data sharing, complying with the Institutional Review Board (IRB) and federal restrictions against disclosing identifiers of human subjects is the first step before sharing clinical data.


Terms and Definitions
Term Definition
Direct Identifiers HIPAA lists 18 typical direct identifiers for PHI as part of the standards for patient protection used by US Health and Human Services.
Indirect Identifiers Information that can be combined with other information to potentially identify a specific individual. Examples include gender, place of birth, ethnicity, and socioeconomic information such as workplace.
Personally Identifiable Information (PII) Any information that can be used to establish the identity of an individual - NIST SP- 800-122
Personal Health Information (PHI) Information relating to physical or mental health of an individual or their provision of care (past, present, or future) and (i) that identifies or (ii) could be used to identify the individual - HIPAA Privacy Rule