The following list defines commonly used, Stanford-specific terms in the data risk assessment (DRA) process at Stanford.
Access
Any ability to view, use, copy or manipulate information in any way that is beyond the incidental contact with Electronic Information in the course of providing University IT systems. For the avoidance of doubt, mere preservation of Electronic Information is not considered Access until review or disclosure occurs. Visit the Stanford Administrative Guide for more details.
Approved Stanford repositories
A digital system that has been approved by Stanford to store data internally or externally.
Child/Minor
Any person under the age of 18.
Consent
Affirmative, conscious, and voluntary agreement by the participant to the processing. The informed consent process involves giving a participant adequate information (notice) concerning the study, providing adequate opportunity for the participant to consider all options, responding to the participant's questions, ensuring that the participant has comprehended this information, obtaining the participant's voluntary agreement to participate, and continuing to provide information as the participant or situation requires. Visit the Research Compliance website for more details.
Data Use Agreement (DUA)
A formal document stating the terms, conditions, and limitations on the use of a specified dataset.
De-identified
De-identification is the removal of identifiable information in a dataset in order to make it impossible to identify specific individuals. There must formal verification that a dataset has been de-identified in accordance with HIPAA requirements. Visit the Sensitive Data webpage for more details.
Delete
To permanently and securely remove data from a repository.
Encrypted
Encryption is a technique that makes data technically inaccessible to those without valid permissions. University policy requires that all computers and devices used by Stanford employees for Stanford business be encrypted. Visit the Encryption at Stanford webpage for more details.
Encrypted at rest
Data that is encrypted while stored (not in motion or transit)
General Data Protection Regulation (GDPR)
A security and privacy law that protects the data of EU residents and citizens. This law applies to all who process data of individuals from the EU even if those processing the data reside outside the EU.
IRB
Institutional Review Board
IRB Waiver of Authorization
This is a process in which the IRB authorizes the processing of PHI data without directly securing the patient's consent.
Legal guardian
A guardian is an individual who is not a child's parent but is legally authorized to make decisions on behalf of a child or an incapacitated/incompetent person.
Legitimate need to know
An individual should have access to identifiable data only when there is a clear justification showing that the individual needs access to the dataset in order to perform a legitimate Stanford function or duty.
Legitimate basis
A justified need to conduct an action, research, study, etc.
Location
A specific place
Mobile device
A device that is capable of storing data and capable of being easily moved e.g. an iOS or Android device, a smartphone, a tablet, a flash drive, a portable hard drive or any other similar device.
NIST
National Institute of Standards and Technology
Notice
A document providing explicitly what information will be collected and how it will be processed. Notice is usually in writing.
Participants
Every individual whose personal data, including physiological or behavioral characteristics and responses are the object of study in a research or other activity/project.
Personally Identifiable Information (PII)
Any information that can make the identity of an individual to be directly or indirectly inferred, including any information that is linked or linkable to that individual. Such information may include but is not limited to: username, email address, home address, phone number, IP address, postal code, gender and year of birth. View the PII Retention Policy for more details.
Protected Health Information (PHI)
All individually identifiable health information that relates to a patient's past, present, or future physical or mental health or condition, the provision of health care to a patient, or the past, present, or future payment for health care provided to a patient. For questions about whether information is considered to be PHI, contact the University Privacy Office. View 18 HIPAA identifiers of PHI. Visit the Sensitive Data webpage for more details.
Purpose
The documented reason or intent motivating the action, research, study, etc.
Retention period
A defined period of time that data can be legitimately retained. View the Data Sanitation Policy for more details
Stanford University individual(s)
A person who is affiliated with Stanford University (staff, faculty, student, researcher)
Stanford University owned and issued devices
All laptops, desktops, and mobile devices used to access, transmit, or store High Risk Data, as defined by the Information Security Office, should be encrypted. Visit the MyDevices service page for more details.
Storage location
Where data will be kept, i.e., in the cloud, physical servers, etc.
Third party
Any individual or entity that is not part of the Stanford organization. Vendors are also third-parties.
Transferred
Data shared outside of Stanford University.
Unable to consent
Like the informed consent process, the assent process is intended to be an ongoing, interactive conversation between the research team and the child, young adult, or adult lacking the capacity to give informed consent. The assent process is not about getting the participant "to sign on the dotted line"; rather, it is about making sure they understand the research and what it means to participate. Visit the Research Compliance website for more details.
Vendor
A third-party individual or entity contracted to provide services or supply goods for Stanford University.
Sensitive PII
“Sensitive PII” is PII, which if lost, compromised, or disclosed without authorization, could result in substantial harm, embarrassment, inconvenience, or unfairness to the individual whose information is disclosed.
Personal data
Any information that relates to an identifiable, unique human being.
