Handling Sensitive Information

Personally Identifiable Information (PII)

PII is information that can be used to distinguish or trace an individual’s identity, either alone or when combined with other information that is linked or linkable to a specific individual.

It is important to recognize that information that is not PII can become PII whenever additional information becomes available (in any medium and from any source) that would make it possible to identify an individual.

Examples of PII:

    Name for purposes other than contacting federal employees
    Photographic identifiers
    Biometric Identifiers
    Driver’s license number
    Vehicle identifiers
    Personal mailing/phone/email address
    Medical records number
    Medical notes
    Computer User ID

    Certificates, legal documents
    Device identifiers
    IP address (when collected with regard to a particular transaction)
    Military status
    Foreign activities
    Identifier that identifies, locates or contacts an individual
    Identifier that reveals activities, characteristics or details about a person
    Financial account information

Sensitive Information (SI)

• Information is considered “sensitive” if the loss of confidentiality, integrity, or availability could be expected to have a serious, severe or catastrophic adverse effect on organizational operations, organizational assets, or individuals.

Protected Health Information (PHI)

Protected Health Information or PHI is a Health Insurance Portability and Accountability Act (HIPAA) term. PHI is any "individually identifiable health information" held or transmitted by a covered entity or its business associate, in any form or media, whether electronic, paper, or oral. NIH is not a covered entity or business associate and is not subject to HIPAA. HIPAA is pervasive in health care today. Clinicians and researchers outside of NIH may use the term when communicating about the sensitive PII that includes health history and medical notes.

Examples:

    Name
    All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP code, and their equivalent geocodes, except for the initial three digits of the ZIP code if, according to the current publicly available data from the Bureau of the Census:
        The geographic unit formed by combining all ZIP codes with the same three initial digits contains more than 20,000 people; and
        The initial three digits of a ZIP code for all such geographic units containing 20,000 or fewer people is changed to 000 Elements or Dates (except year)
    All elements of dates (except year) for dates that are directly related to an individual, including birth date, admission date, discharge date, death date, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older
    Phone & Fax Numbers
    Email Addresses
    SSNs (full number and/or last 4 digits)
    Medical Record Numbers
    Health Plan Beneficiary Numbers
    Account Numbers
    Certificate/License Numbers
    Device Identifiers/Serial Numbers
    Vehicle identifiers and serial numbers, including license plate numbers
    Web URLs
    IP Address Numbers
    Biometric identifiers (including finger and voice prints)
    Full Face Photographic and Comparable Images
    Other unique identifying number, characteristic, or code (except the unique code assigned by a Principal Investigator to code data)

Privacy Laws

The Privacy Act was enacted in 1974. The Electronic Government (E-Gov) Act was enacted in 2002 as was the Federal Information Security Modernization Act (Title III of the E-Gov Act.)

In addition to these statutes, NIH must also comply with various Office of Management & Budget (OMB) Memoranda, Circulars, and HHS and NIH Privacy Policies.


The Fair Information Practice Principles (FIPPs), rooted in a 1973 Federal Government report from the Department of Health, Education, and Welfare Advisory Committee, “Records, Computers and the Rights of Citizens,” have informed Federal statute and the laws of many U.S. states and foreign nations, and have been incorporated in the policies of many organizations around the world.

In part, the Privacy Act requires agencies to:

    Limit the collection of personal information to what is necessary
    Publish a System of Records Notice prior to storing information in a record system designed to be retrieved by a personal identifier
    Comply with the law or face civil remedies and criminal penalties

The E-Gov Act requires agencies to:

    Conduct Privacy Impact Assessments for NIH entities
    Translate privacy policies into standardized machine-readable format;
    Post privacy notices on public-facing agency websites.

FISMA requires agencies to:

    Provide a comprehensive framework for IT standards and programs;
    Ensure integrity, confidentiality and availability of personal information;
    Perform program management, evaluation, and OMB reporting activities.