# De-Identified UDS Plus Patient - De-Identified, Anonymized FHIR Profiles Library v0.1.0

* [**Table of Contents**](toc.md)
* [**Artifacts Summary**](artifacts.md)
* **De-Identified UDS Plus Patient**

## Resource Profile: De-Identified UDS Plus Patient 

| | | |
| :--- | :--- | :--- |
| *Official URL*:http://hl7.org/fhir/us/uds-plus/StructureDefinition/de-identified-uds-plus-patient | *Version*:0.1.0 | |
| * Standards status: *[Trial-use](http://hl7.org/fhir/R4/versions.html#std-process) | [Maturity Level](http://hl7.org/fhir/versions.html#maturity): 1 | *Computable Name*:DeIdentifiedUDSPlusPatient |

 
This Patient profile represents a Patient availing HRSA services. 

All canonical (Official) URLs will be changed in the future and are not available currently on the web.

### Introduction

This profile is used to represent de-identified patient information. The de-identification process has to remove all data elements not explicitly identified as "SUPPORTED" in the profile.

The [HHS De-identification Guidance](https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/coveredentities/De-identification/hhs_deid_guidance.pdf) is to be followed to ensure appropriate level of de-identification is performed.

According to the HHS guidance the following data elements have to be removed or de-identified

* Patient Name
* Address that is more specific than a state
* All dates should not have a precision of more than the year. This means month and day cannot be included.
* Demographics including birthdate, deceased indicator
* Patient contact details such as telephone numbers, fax, email, URLs,
* Patient personal identifiers such as SSN, Drivers License,
* Business identifiers such as MRNs, certificate numbers, Account numbers
* Biometrics such as fingerprints, photos

In FHIR Resources, text elements which provide human readable information to the providers may be generated using programs and tools from the data present within the resource. For e.g a Patient resource text element may contain information such as the full name, Gender and Date of Birth. This type of information will enable identification of the individuals. In order to avoid inadvertent revealing of PII/PHI, text elements cannot be included in the De-identified FHIR resource and the submission will be rejected when text elements are present by the validation process.

**Age Computation**

The Data Submitter has to compute the age based as of December 31st of the previous year for inclusion in the UDS+ report.

**Id Generation**

The original patient resource id should not be included in the De-identified patient instance. Instead a new id should be created and provided as part of the FHIR resource. This Data Submitter should be capable of using the generated id to relink the data to the original patient. All resource references to the Patient submitted as part of the UDS+ report should refer to newly generated de-identified id.

**Usage of Data Absent Reason Extension**

For the UDS+ reporting, the patient data is de-identified and in the process zip codes may be masked to a value of "00000". In these cases the dataAbsentReason extension must be added to identify that the data is "masked". If the zip code is not known, a value of "00000" must be sent with a dataAbsentReason of "unknown". If the zip code is outside the country, a value of "00000" must be sent with a dataAbsentReason of "unsupported".

**Birth Sex Additional Constraints**

NullFlavors are not allowed for BirthSex reporting for UDS+ even though they are allowed in US Core.

**Race and Ethnicity Additional Constraints**

US Core allows Race and Ethnicity to be described as only text or rolled up to the OMB categories, however for UDS+ reporting detailed race and ethnicity have to be captured and reported as part of the profile. If the reported race and ethncity values are not null flavors then detailed values are mandatory.

**Sexual Orientation Additional Constraints**

Health Centers which have not implemented the methods to capture Sexual Orientation, should use the null flavor coded value of "NASK" specifically.

**Gender Identity Additional Constraints**

Health Centers which have not implemented the methods to capture Gender Identity, should use the null flavor coded value of "NASK" specifically.

**Examples** Examples of identifiable data and its corresponding de-identifiable data is present in [Reporting Guidance](reportingguidance.md).

**Usages:**

* Refer to this Profile: [De-Identified UDS Plus Income](StructureDefinition-de-identified-uds-plus-income-observation.md), [De-Identified UDS Plus RelatedPerson](StructureDefinition-de-identified-uds-plus-relatedperson.md), [De-Identified UDS Plus AdverseEvent](StructureDefinition-uds-plus-adverseevent.md), [De-Identified UDS Plus AllergyIntolerance](StructureDefinition-uds-plus-allergyintolerance.md)... Show 11 more, [De-Identified UDS Plus Clinical Result Observation](StructureDefinition-uds-plus-clinical-result-observation.md), [DeIdentified UDS Plus Coverage](StructureDefinition-uds-plus-coverage.md), [De-Identified UDS Plus Diagnosis](StructureDefinition-uds-plus-diagnosis.md), [De-Identified UDS Plus Encounter](StructureDefinition-uds-plus-encounter.md), [De-Identified UDS Plus Immunization](StructureDefinition-uds-plus-immunization.md), [De-Identified UDS Plus Lab Observation](StructureDefinition-uds-plus-lab-observation.md), [De-Identified UDS Plus MedicationRequest](StructureDefinition-uds-plus-medicationrequest.md), [De-Identified UDS Plus MedicationStatement](StructureDefinition-uds-plus-medicationstatement.md), [De-Identified UDS Plus Procedure](StructureDefinition-uds-plus-procedure.md), [De-Identified UDS Plus ServiceRequest](StructureDefinition-uds-plus-servicerequest.md) and [De-Identified UDS Plus Sexual Orientation](StructureDefinition-uds-plus-sexual-orientation-observation.md)
* Examples for this Profile: [Patient/de-identified-example](Patient-de-identified-example.md) and [Patient/de-identified-smallpop-example](Patient-de-identified-smallpop-example.md)

You can also check for [usages in the FHIR IG Statistics](https://packages2.fhir.org/xig/hl7.fhir.us.dapl|current/StructureDefinition/de-identified-uds-plus-patient)

### Formal Views of Profile Content

 [Description of Profiles, Differentials, Snapshots and how the different presentations work](http://build.fhir.org/ig/FHIR/ig-guidance/readingIgs.html#structure-definitions). 

 

Other representations of profile: [CSV](StructureDefinition-de-identified-uds-plus-patient.csv), [Excel](StructureDefinition-de-identified-uds-plus-patient.xlsx), [Schematron](StructureDefinition-de-identified-uds-plus-patient.sch) 



## Resource Content

```json
{
  "resourceType" : "StructureDefinition",
  "id" : "de-identified-uds-plus-patient",
  "meta" : {
    "versionId" : "12",
    "lastUpdated" : "2022-07-12T02:03:11.293+00:00",
    "source" : "#3LDMUQYYwafwTzqK"
  },
  "extension" : [{
    "url" : "http://hl7.org/fhir/StructureDefinition/structuredefinition-wg",
    "valueCode" : "cgp"
  },
  {
    "url" : "http://hl7.org/fhir/StructureDefinition/structuredefinition-fmm",
    "valueInteger" : 1,
    "_valueInteger" : {
      "extension" : [{
        "url" : "http://hl7.org/fhir/StructureDefinition/structuredefinition-conformance-derivedFrom",
        "valueCanonical" : "http://hl7.org/fhir/us/dapl/ImplementationGuide/dapl"
      }]
    }
  },
  {
    "url" : "http://hl7.org/fhir/StructureDefinition/structuredefinition-standards-status",
    "valueCode" : "trial-use",
    "_valueCode" : {
      "extension" : [{
        "url" : "http://hl7.org/fhir/StructureDefinition/structuredefinition-conformance-derivedFrom",
        "valueCanonical" : "http://hl7.org/fhir/us/dapl/ImplementationGuide/dapl"
      }]
    }
  }],
  "url" : "http://hl7.org/fhir/us/uds-plus/StructureDefinition/de-identified-uds-plus-patient",
  "version" : "0.1.0",
  "name" : "DeIdentifiedUDSPlusPatient",
  "title" : "De-Identified UDS Plus Patient",
  "status" : "active",
  "experimental" : false,
  "date" : "2026-03-16T10:54:28+00:00",
  "publisher" : "HL7 International / Cross Group Projects",
  "contact" : [{
    "telecom" : [{
      "system" : "url",
      "value" : "http://www.hl7.org/Special/committees/cgp"
    }]
  }],
  "description" : "This Patient profile represents a Patient availing HRSA services.",
  "jurisdiction" : [{
    "coding" : [{
      "system" : "urn:iso:std:iso:3166",
      "code" : "US"
    }]
  }],
  "fhirVersion" : "4.0.1",
  "mapping" : [{
    "identity" : "rim",
    "uri" : "http://hl7.org/v3",
    "name" : "RIM Mapping"
  },
  {
    "identity" : "cda",
    "uri" : "http://hl7.org/v3/cda",
    "name" : "CDA (R2)"
  },
  {
    "identity" : "w5",
    "uri" : "http://hl7.org/fhir/fivews",
    "name" : "FiveWs Pattern Mapping"
  },
  {
    "identity" : "v2",
    "uri" : "http://hl7.org/v2",
    "name" : "HL7 v2 Mapping"
  },
  {
    "identity" : "loinc",
    "uri" : "http://loinc.org",
    "name" : "LOINC code for the element"
  }],
  "kind" : "resource",
  "abstract" : false,
  "type" : "Patient",
  "baseDefinition" : "http://hl7.org/fhir/StructureDefinition/Patient",
  "derivation" : "constraint",
  "differential" : {
    "element" : [{
      "id" : "Patient",
      "path" : "Patient",
      "short" : "De-Identified UDS Plus Patient",
      "definition" : "The UDS+ profile is based on the **FHIR Patient resource and establishes the core elements, extensions, vocabularies and value sets for representing patients for UDS+ program."
    },
    {
      "id" : "Patient.id",
      "path" : "Patient.id",
      "short" : "The de-identified patient identifier created by the health center to send data to HRSA.",
      "definition" : "De-dentified patient identifier.",
      "mustSupport" : true
    },
    {
      "id" : "Patient.text",
      "path" : "Patient.text",
      "short" : "Cannot include any text in the resource as part of the de-identified data.",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.contained",
      "path" : "Patient.contained",
      "short" : "Cannot include any contained resources in the resource as part of the de-identified data.",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.extension:uds-plus-race",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-race",
      "min" : 1,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-race-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-ethnicty",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-ethnicty",
      "min" : 1,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-ethnicity-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-birthsex",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-birthsex",
      "min" : 1,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-birthsex-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-age-extension",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-age-extension",
      "short" : "Age of the Patient computed using birthDate and the reporting period reference",
      "min" : 1,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-age-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-gender-identity-extension",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-gender-identity-extension",
      "short" : "Gender Identity of the pateient",
      "min" : 0,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-gender-identity-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-agriculture-worker-status",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-agriculture-worker-status",
      "short" : "Agriculture Status of the patient",
      "min" : 0,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/udsplus-agriculture-worker-status"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-housing-status",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-housing-status",
      "short" : "Housing Status of the patient",
      "min" : 0,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-housing-status-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.extension:uds-plus-veteran-status",
      "path" : "Patient.extension",
      "sliceName" : "uds-plus-veteran-status",
      "short" : "Veteran Status of the patient",
      "min" : 0,
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/us/uds-plus/StructureDefinition/uds-plus-veteran-status-extension"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.identifier",
      "path" : "Patient.identifier",
      "short" : "Cannot include any identifier in the resource as part of the de-identified data.",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.name",
      "path" : "Patient.name",
      "short" : "Cannot include any name in the resource as part of the de-identified data.",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.telecom",
      "path" : "Patient.telecom",
      "short" : "Cannot include any telecom information in the resource as part of the de-identified data.",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.birthDate",
      "path" : "Patient.birthDate",
      "short" : "Cannot include any date of birth information in the resource as part of the de-identified data.",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.deceasedBoolean",
      "path" : "Patient.deceasedBoolean",
      "short" : "Can only have deceased boolean.",
      "min" : 0,
      "max" : "1",
      "mustSupport" : true
    },
    {
      "id" : "Patient.address",
      "path" : "Patient.address",
      "short" : "Included only to support zip code",
      "min" : 1,
      "max" : "1",
      "mustSupport" : true
    },
    {
      "id" : "Patient.address.text",
      "path" : "Patient.address.text",
      "short" : "Text cannot be included in the profile",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.address.line",
      "path" : "Patient.address.line",
      "short" : "Street names cannot be included in the profile",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.address.postalCode",
      "path" : "Patient.address.postalCode",
      "short" : "ZipCode must be included in the profile",
      "min" : 1,
      "max" : "1",
      "mustSupport" : true
    },
    {
      "id" : "Patient.address.postalCode.extension:dataAbsentReason",
      "path" : "Patient.address.postalCode.extension",
      "sliceName" : "dataAbsentReason",
      "short" : "Reason why the data is not present",
      "max" : "1",
      "type" : [{
        "code" : "Extension",
        "profile" : ["http://hl7.org/fhir/StructureDefinition/data-absent-reason"]
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.address.postalCode.extension:dataAbsentReason.value[x]",
      "path" : "Patient.address.postalCode.extension.value[x]",
      "min" : 1,
      "type" : [{
        "code" : "code"
      }],
      "mustSupport" : true
    },
    {
      "id" : "Patient.maritalStatus",
      "path" : "Patient.maritalStatus",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.multipleBirth[x]",
      "path" : "Patient.multipleBirth[x]",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.photo",
      "path" : "Patient.photo",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.contact",
      "path" : "Patient.contact",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.communication.language",
      "path" : "Patient.communication.language",
      "short" : "Language must be included in the profile",
      "min" : 1,
      "max" : "1",
      "mustSupport" : true,
      "binding" : {
        "strength" : "extensible",
        "description" : "The set of languages that the patient uses",
        "valueSet" : "http://hl7.org/fhir/us/core/ValueSet/simple-language"
      }
    },
    {
      "id" : "Patient.generalPractitioner",
      "path" : "Patient.generalPractitioner",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.managingOrganization",
      "path" : "Patient.managingOrganization",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    },
    {
      "id" : "Patient.link",
      "path" : "Patient.link",
      "short" : "Cannot include information not required for UDS+",
      "min" : 0,
      "max" : "0",
      "mustSupport" : false
    }]
  }
}

```
