# De-Identification Handbook Home - De-Identification Profile v0.0.1-current

* [**Table of Contents**](toc.md)
* **De-Identification Handbook Home**

## De-Identification Handbook Home

| | |
| :--- | :--- |
| *Official URL*:https://profiles.ihe.net/ITI/DeId/ImplementationGuide/ihe.iti.deid | *Version*:0.0.1-current |
| Draft as of 2026-01-07 | *Computable Name*:IHE_ITI_DeId |

This handbook explains the PROCESS for removing individually identifiable information from healthcare data. This includes de-identification, pseudonymization, re-linking, design considerations, techniques, and risks. The intended audience is IHE Profile editors and healthcare information technology implementers needing a guide for designing and implementing de-identification systems.

| |
| :--- |
| [Significant Changes, Open and Closed Issues](issues.md) |

### Organization of This Guide

This guide is organized into the following sections:

1. [Introduction to This Handbook](intro.md)
1. [Glossary](glossary.md)
1. [De-Identification, Pseudonymization, and Relinking](concepts.md)
* [Navigating the Complexity of Privacy Concepts](concepts.md#navigating-the-complexity-of-privacy-concepts)
* [Identifiability](concepts.md#identifiability)
* [Pseudonymization, De-Identification and Anonymization Explained](concepts.md#de-identification-pseudonymization-and-anonymization-explained)
* [Overall De-Identification Approach](concepts.md#overall-de-identification-approach)
* [Re-identification](concepts.md#re-identification)
* [Threats & Attacks](concepts.md#threats--attacks)

1. [Data Types](data-types.md)
1. [Techniques](algorithms.md)
* [Classification of de-identification techniques](algorithms.md#classification-of-de-identification-techniques)
* [De-Identifying Identifiers](algorithms.md#de-identifying-identifiers)
* [De-Identifying Sensitive Attributes](algorithms.md#de-identifying-identifiers)
* [Privacy Models](algorithms.md#privacy-models)

1. [Process](process.md)
* [Step 1 – Requirements Design](process.md#step-1--requirements-design)
* [Step 2 – De-identification Design](process.md#step-2--de-identification-design)
* [Step 3 – Design Validation](process.md#step-3--design-validation)
* [Step 4 – Implementation](process.md#step-4--implementation)
* [Step 5 – Implementation Validation](process.md#step-5--implementation-validation)
* [Step 6 – Periodic Review of Implementation](process.md#step-6--periodic-review-of-implementation)

1. [De-Identification and Pseudonymization for IHE Profile Editors](ihe-use.md)
1. [Security Considerations](security.md)
* [Design of De-Identification Algorithm](security.md#design-of-de-identification-algorithm)
* [Execution of De-Identification on Data](security.md#execution-of-de-identification-on-data)
* [ATNA and Other Logging Considerations](security.md#atna-and-other-logging-considerations)

1. Exemplar
* [FHIR Examples](fhir-example.md)
* [DICOM Examples](dicom-example.md)
* [HL7 2 Examples](hl7-example.md)
* [Family Planning](family-planning.md)

1. Other
* [Download and Analysis](download.md)
* [Significant Changes and Issues](issues.md)

1. [References](references.md)

See also the [Table of Contents](toc.md) and the index of [Artifacts](artifacts.md) defined as part of this implementation guide.

### Conformance Expectations

IHE uses the normative words: Shall, Should, and May according to [standards conventions](https://profiles.ihe.net/GeneralIntro/ch-E.html).

#### Must Support

The use of `mustSupport` in StructureDefinition profiles is equivalent to the IHE use of **R2** as defined in [Appendix Z](https://profiles.ihe.net/ITI/TF/Volume2/ch-Z.html#z.10-profiling-conventions-for-constraints-on-fhir).

`mustSupport` only has a meaning on items that are minimal cardinality of zero (0), and applies only to the source actor populating the data. The source actor shall populate the elements marked with MustSupport, if the concept is supported by the actor, a value exists, and security and consent rules permit. The consuming actors should handle these elements being populated or being absent/empty. Note that sometimes mustSupport will appear on elements with a minimal cardinality greater than zero (0), this is due to inheritance from a less constrained profile.



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        "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-parameter"
      },
      {
        "extension" : [
          {
            "url" : "code",
            "valueCode" : "fmm-definition"
          },
          {
            "url" : "value",
            "valueString" : "http://hl7.org/fhir/versions.html#maturity"
          }
        ],
        "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-parameter"
      },
      {
        "extension" : [
          {
            "url" : "code",
            "valueCode" : "propagate-status"
          },
          {
            "url" : "value",
            "valueString" : "true"
          }
        ],
        "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-parameter"
      },
      {
        "extension" : [
          {
            "url" : "code",
            "valueCode" : "excludelogbinaryformat"
          },
          {
            "url" : "value",
            "valueString" : "true"
          }
        ],
        "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-parameter"
      },
      {
        "extension" : [
          {
            "url" : "code",
            "valueCode" : "tabbed-snapshots"
          },
          {
            "url" : "value",
            "valueString" : "true"
          }
        ],
        "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-parameter"
      }
    ],
    "resource" : [
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "StructureDefinition:resource"
          }
        ],
        "reference" : {
          "reference" : "StructureDefinition/IHE.BasicAudit.DeIdentification.Source"
        },
        "name" : "Audit Event for De-Identification at Source",
        "description" : "Defines constraints on the AuditEvent Resource to record when a De-Identification happens at the Source.\nNote that a De-Identification event often impacts many different patients, so many AuditEvent resources need to be created so that each Patient is individually represented. \nThis prevents leakage of other patients' that were also De-Identified at the same time.\n\n- Export event\n- subtype of deidentify or pseudonymize\n- shall have source of itself\n- shall have a source agent\n- should have a recipient agent(s) if known\n- may have user, app, organization agent(s)\n  - combine with the Security Token pattern\n- should have the custodian that released the data\n- should have the authorizer that represented the patient (may be the patient)\n- shall have a patient entity\n- may have the consent that authorized the de-identification\n- may have the authorizing client token (saml, jwt, etc)\n- may have the set of data entity(ies)",
        "exampleBoolean" : false
      },
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "ValueSet"
          }
        ],
        "reference" : {
          "reference" : "ValueSet/IHE.BasicAudit.DeIdentification.Subtype"
        },
        "name" : "Audit Event Subtype for De-Identification",
        "description" : "Defines the AuditEvent Subtype for De-Identification events.\nThis is used to indicate that the AuditEvent is specifically for a De-Identification event.\nThe code is based on the ISO 21089 lifecycle code for de-identification.",
        "exampleBoolean" : false
      },
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "AuditEvent"
          }
        ],
        "reference" : {
          "reference" : "AuditEvent/ex-auditReIdentification-source"
        },
        "name" : "Audit Example of authorized Re-Identification at source",
        "description" : "Audit Example for an authorized Re-Identification from source perspective",
        "exampleCanonical" : "https://profiles.ihe.net/ITI/DeId/StructureDefinition/IHE.BasicAudit.DeIdentification.Source"
      },
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "AuditEvent"
          }
        ],
        "reference" : {
          "reference" : "AuditEvent/ex-auditDeIdentification-source"
        },
        "name" : "Audit Example of De-Identification at source",
        "description" : "Audit Example for a De-Identification from source perspective",
        "exampleCanonical" : "https://profiles.ihe.net/ITI/DeId/StructureDefinition/IHE.BasicAudit.DeIdentification.Source"
      },
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "CodeSystem"
          }
        ],
        "reference" : {
          "reference" : "CodeSystem/DeIdentificationEntityType"
        },
        "name" : "Entity Type for De-Identification",
        "description" : "These AuditEvent.entity.type are related to De-Identification policy identification.",
        "exampleBoolean" : false
      },
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "ValueSet"
          }
        ],
        "reference" : {
          "reference" : "ValueSet/DeIdentificationEntityTypeVS"
        },
        "name" : "Entity Type for De-Identification valueset",
        "description" : "ValueSet Entity Type for De-Identification",
        "exampleBoolean" : false
      },
      {
        "extension" : [
          {
            "url" : "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
            "valueString" : "CapabilityStatement"
          }
        ],
        "reference" : {
          "reference" : "CapabilityStatement/IHE.DeId.AuditCreator"
        },
        "name" : "IHE DeId Audit Creator",
        "description" : "CapabilityStatement for [DeIdentification Audit Creator](security.html) Actor in [DeIdentification Handbook](index.html).\n\nThis Actor is derived off of the [ATNA Secure Application](https://profiles.ihe.net/ITI/TF/Volume1/ch-9.html#9.1.1.2) \nor [ATNA Secure Node](https://profiles.ihe.net/ITI/TF/Volume1/ch-9.html#9.1.1.1) actor \nwith [ATNA ATX:FHIR Feed Option](https://profiles.ihe.net/ITI/TF/Volume1/ch-9.html). \n\nThis Actor is derived off of the [Basic Audit Log Patterns (BALP)](https://profiles.ihe.net/ITI/BALP/index.html) \n[Audit Creator](https://profiles.ihe.net/ITI/BALP/volume-1.html#152111-audit-creator) recording rich audit log entries to ATNA.\n\n- This Actor is involved in the generation of De-Identified data, and thus would record [De-Identification Audit Events](StructureDefinition-IHE.BasicAudit.DeIdentification.Source.html)\n- Ths Actor may be involved in events that uncover a Privacy Disclosure, and thus would record [Privacy Disclosure Audit Events](https://build.fhir.org/ig/IHE/ITI.BasicAudit/StructureDefinition-IHE.BasicAudit.PrivacyDisclosure.Source.html).",
        "exampleBoolean" : false
      }
    ],
    "page" : {
      "extension" : [
        {
          "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
          "valueUrl" : "toc.html"
        }
      ],
      "nameUrl" : "toc.html",
      "title" : "Table of Contents",
      "generation" : "html",
      "page" : [
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "index.html"
            }
          ],
          "nameUrl" : "index.html",
          "title" : "De-Identification Handbook Home",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "intro.html"
            }
          ],
          "nameUrl" : "intro.html",
          "title" : "Introduction",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "glossary.html"
            }
          ],
          "nameUrl" : "glossary.html",
          "title" : "Glossary",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "concepts.html"
            }
          ],
          "nameUrl" : "concepts.html",
          "title" : "Concepts",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "data-types.html"
            }
          ],
          "nameUrl" : "data-types.html",
          "title" : "Data Types",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "techniques.html"
            }
          ],
          "nameUrl" : "techniques.html",
          "title" : "Techniques",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "process.html"
            }
          ],
          "nameUrl" : "process.html",
          "title" : "Process",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "ihe-use.html"
            }
          ],
          "nameUrl" : "ihe-use.html",
          "title" : "IHE Use",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "security.html"
            }
          ],
          "nameUrl" : "security.html",
          "title" : "Security Considerations",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "dicom-example.html"
            }
          ],
          "nameUrl" : "dicom-example.html",
          "title" : "DICOM Example",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "fhir-example.html"
            }
          ],
          "nameUrl" : "fhir-example.html",
          "title" : "FHIR Example",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "hl7-example.html"
            }
          ],
          "nameUrl" : "hl7-example.html",
          "title" : "HL7 v2 Example",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "family-planning.html"
            }
          ],
          "nameUrl" : "family-planning.html",
          "title" : "Family Planning Example",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "download.html"
            }
          ],
          "nameUrl" : "download.html",
          "title" : "Download and Analysis",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "issues.html"
            }
          ],
          "nameUrl" : "issues.html",
          "title" : "Significant Changes and Issues",
          "generation" : "markdown"
        },
        {
          "extension" : [
            {
              "url" : "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
              "valueUrl" : "references.html"
            }
          ],
          "nameUrl" : "references.html",
          "title" : "References",
          "generation" : "markdown"
        }
      ]
    },
    "parameter" : [
      {
        "code" : "path-resource",
        "value" : "input/resources"
      },
      {
        "code" : "path-resource",
        "value" : "fsh-generated/resources"
      },
      {
        "code" : "path-resource",
        "value" : "input/examples"
      },
      {
        "code" : "path-resource",
        "value" : "input/capabilities"
      },
      {
        "code" : "path-resource",
        "value" : "input/extensions"
      },
      {
        "code" : "path-resource",
        "value" : "input/models"
      },
      {
        "code" : "path-resource",
        "value" : "input/operations"
      },
      {
        "code" : "path-resource",
        "value" : "input/profiles"
      },
      {
        "code" : "path-resource",
        "value" : "input/vocabulary"
      },
      {
        "code" : "path-resource",
        "value" : "input/testing"
      },
      {
        "code" : "path-resource",
        "value" : "input/history"
      },
      {
        "code" : "path-pages",
        "value" : "template/config"
      },
      {
        "code" : "path-pages",
        "value" : "input/images"
      },
      {
        "code" : "path-tx-cache",
        "value" : "input-cache/txcache"
      }
    ]
  }
}

```
