HL7 Personal Health Record System Functional Model, Release 2
2.0.1 - Normative

HL7 Personal Health Record System Functional Model, Release 2, published by EHR WG. This guide is not an authorized publication; it is the continuous build for version 2.0.1 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/HL7/phrsfm-ig/ and changes regularly. See the Directory of published versions

: S.4.1.2 Manage De-Identified Data Request Process (Function)

Page standards status: Normative

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@prefix fhir: <http://hl7.org/fhir/> .
@prefix owl: <http://www.w3.org/2002/07/owl#> .
@prefix rdf: <http://www.w3.org/1999/02/22-rdf-syntax-ns#> .
@prefix rdfs: <http://www.w3.org/2000/01/rdf-schema#> .
@prefix xsd: <http://www.w3.org/2001/XMLSchema#> .

# - resource -------------------------------------------------------------------

 a fhir:Requirements ;
  fhir:nodeRole fhir:treeRoot ;
  fhir:id [ fhir:v "PHRSFMR2-S.4.1.2"] ; # 
  fhir:meta [
    ( fhir:profile [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/FMFunction"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/FMFunction>     ] )
  ] ; # 
  fhir:language [ fhir:v "en"] ; # 
  fhir:text [
fhir:status [ fhir:v "extensions" ] ;
fhir:div [ fhir:v "<div xml:lang=\"en\" xmlns=\"http://www.w3.org/1999/xhtml\" lang=\"en\">\n    \n    \n    <div id=\"description\"><b>Description <a href=\"https://hl7.org/fhir/versions.html#std-process\" title=\"Informative Content\" class=\"informative-flag\">I</a>:</b> <div><p>When the PHR Account Holder desires to share his/her information in a de-identified state, the PHR Account Holder can export the data in a fashion that meets requirements for de-identification in that locale or realm.</p>\n<p>Example(s): If a person wants to participate in a study that will utilize de-identified data, then the system should provide the ability to de-identify this data according to the requirements of the study.</p>\n<p>In Germany, when a PHR Account Holder’s subscription is cancelled, the PHR data may be maintained. But if the data is maintained, it must be maintained in a de-identified state or be pseudonymized (similar to the limited data set in the U.S. Privacy Rule).</p>\n</div></div>\n    \n    \n    \n    <div id=\"requirements\"><b>Criteria <a href=\"https://hl7.org/fhir/versions.html#std-process\" title=\"Normative Content\" class=\"normative-flag\">N</a>:</b></div>\n    \n    <table id=\"statements\" class=\"grid dict\">\n        \n        <tr>\n            <td style=\"padding-left: 4px;\">\n            S.4.1.2#01\n            </td>\n            <td style=\"padding-left: 4px;\">\n            SHOULD\n            \n            \n            \n            </td>\n            <td style=\"padding-left: 4px;\" class=\"requirement\">\n                <div><p>The system SHOULD provide the ability for the PHR Account Holder to de-identify his or her information as needed to meet the requirements of a study or other request.</p>\n</div>\n                \n            </td>\n        </tr>\n        \n        <tr>\n            <td style=\"padding-left: 4px;\">\n            S.4.1.2#02\n            </td>\n            <td style=\"padding-left: 4px;\">\n            SHOULD\n            \n            \n            \n            </td>\n            <td style=\"padding-left: 4px;\" class=\"requirement\">\n                <div><p>The system SHOULD capture the source and date of a request for de-identified data.</p>\n</div>\n                \n            </td>\n        </tr>\n        \n        <tr>\n            <td style=\"padding-left: 4px;\">\n            S.4.1.2#03\n            </td>\n            <td style=\"padding-left: 4px;\">\n            SHOULD\n            \n            \n            \n            </td>\n            <td style=\"padding-left: 4px;\" class=\"requirement\">\n                <div><p>The system SHOULD provide the ability to capture the date of transmission, data transmitted, and the target of the de-identified data.</p>\n</div>\n                \n            </td>\n        </tr>\n        \n        <tr>\n            <td style=\"padding-left: 4px;\">\n            S.4.1.2#04\n            </td>\n            <td style=\"padding-left: 4px;\">\n            SHOULD\n            \n            \n            \n            </td>\n            <td style=\"padding-left: 4px;\" class=\"requirement\">\n                <div><p>The system SHOULD provide the ability to capture confirmation of the target’s receipt of the data.</p>\n</div>\n                \n            </td>\n        </tr>\n        \n        <tr>\n            <td style=\"padding-left: 4px;\">\n            S.4.1.2#05\n            </td>\n            <td style=\"padding-left: 4px;\">\n            SHOULD\n            \n            \n            \n            </td>\n            <td style=\"padding-left: 4px;\" class=\"requirement\">\n                <div><p>The system SHOULD provide the ability to render the history of data transmissions.</p>\n</div>\n                \n            </td>\n        </tr>\n        \n        <tr>\n            <td style=\"padding-left: 4px;\">\n            S.4.1.2#06\n            </td>\n            <td style=\"padding-left: 4px;\">\n            SHOULD\n            \n            \n            \n            </td>\n            <td style=\"padding-left: 4px;\" class=\"requirement\">\n                <div><p>The system SHOULD provide the ability to de-identify data according to organizational policy and/or jurisdictional law.</p>\n</div>\n                \n            </td>\n        </tr>\n        \n    </table>\n</div>"^^rdf:XMLLiteral ]
  ] ; # 
  fhir:extension ( [
fhir:url [
fhir:v "http://hl7.org/fhir/StructureDefinition/structuredefinition-standards-status"^^xsd:anyURI ;
fhir:l <http://hl7.org/fhir/StructureDefinition/structuredefinition-standards-status>     ] ;
fhir:value [
a fhir:Code ;
fhir:v "normative"     ]
  ] [
fhir:url [
fhir:v "http://hl7.org/fhir/StructureDefinition/structuredefinition-wg"^^xsd:anyURI ;
fhir:l <http://hl7.org/fhir/StructureDefinition/structuredefinition-wg>     ] ;
fhir:value [
a fhir:Code ;
fhir:v "ehr"     ]
  ] ) ; # 
  fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/Requirements/PHRSFMR2-S.4.1.2"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/Requirements/PHRSFMR2-S.4.1.2>
  ] ; # 
  fhir:version [ fhir:v "2.0.1"] ; # 
  fhir:name [ fhir:v "S_4_1_2_Manage_De_Identified_Data_Request_Process"] ; # 
  fhir:title [ fhir:v "S.4.1.2 Manage De-Identified Data Request Process (Function)"] ; # 
  fhir:status [ fhir:v "active"] ; # 
  fhir:date [ fhir:v "2025-12-07T09:26:53+00:00"^^xsd:dateTime] ; # 
  fhir:publisher [ fhir:v "EHR WG"] ; # 
  fhir:contact ( [
    ( fhir:telecom [
fhir:system [ fhir:v "url" ] ;
fhir:value [ fhir:v "http://www.hl7.org/Special/committees/ehr" ]     ] )
  ] ) ; # 
  fhir:description [ fhir:v "Provide PHR Account Holder data in a manner that meets local requirements for de-identification."] ; # 
  fhir:purpose [ fhir:v "When the PHR Account Holder desires to share his/her information in a de-identified state, the PHR Account Holder can export the data in a fashion that meets requirements for de-identification in that locale or realm.\r\n\r\nExample(s): If a person wants to participate in a study that will utilize de-identified data, then the system should provide the ability to de-identify this data according to the requirements of the study.\r\n\r\nIn Germany, when a PHR Account Holder’s subscription is cancelled, the PHR data may be maintained. But if the data is maintained, it must be maintained in a de-identified state or be pseudonymized (similar to the limited data set in the U.S. Privacy Rule)."] ; # 
  fhir:statement ( [
    ( fhir:extension [
fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent>       ] ;
fhir:value [
a fhir:Boolean ;
fhir:v false       ]     ] ) ;
fhir:key [ fhir:v "PHRSFMR2-S.4.1.2-01" ] ;
fhir:label [ fhir:v "S.4.1.2#01" ] ;
    ( fhir:conformance [ fhir:v "SHOULD" ] ) ;
fhir:conditionality [ fhir:v false ] ;
fhir:requirement [ fhir:v "The system SHOULD provide the ability for the PHR Account Holder to de-identify his or her information as needed to meet the requirements of a study or other request." ]
  ] [
    ( fhir:extension [
fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent>       ] ;
fhir:value [
a fhir:Boolean ;
fhir:v false       ]     ] ) ;
fhir:key [ fhir:v "PHRSFMR2-S.4.1.2-02" ] ;
fhir:label [ fhir:v "S.4.1.2#02" ] ;
    ( fhir:conformance [ fhir:v "SHOULD" ] ) ;
fhir:conditionality [ fhir:v false ] ;
fhir:requirement [ fhir:v "The system SHOULD capture the source and date of a request for de-identified data." ]
  ] [
    ( fhir:extension [
fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent>       ] ;
fhir:value [
a fhir:Boolean ;
fhir:v false       ]     ] ) ;
fhir:key [ fhir:v "PHRSFMR2-S.4.1.2-03" ] ;
fhir:label [ fhir:v "S.4.1.2#03" ] ;
    ( fhir:conformance [ fhir:v "SHOULD" ] ) ;
fhir:conditionality [ fhir:v false ] ;
fhir:requirement [ fhir:v "The system SHOULD provide the ability to capture the date of transmission, data transmitted, and the target of the de-identified data." ]
  ] [
    ( fhir:extension [
fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent>       ] ;
fhir:value [
a fhir:Boolean ;
fhir:v false       ]     ] ) ;
fhir:key [ fhir:v "PHRSFMR2-S.4.1.2-04" ] ;
fhir:label [ fhir:v "S.4.1.2#04" ] ;
    ( fhir:conformance [ fhir:v "SHOULD" ] ) ;
fhir:conditionality [ fhir:v false ] ;
fhir:requirement [ fhir:v "The system SHOULD provide the ability to capture confirmation of the target’s receipt of the data." ]
  ] [
    ( fhir:extension [
fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent>       ] ;
fhir:value [
a fhir:Boolean ;
fhir:v false       ]     ] ) ;
fhir:key [ fhir:v "PHRSFMR2-S.4.1.2-05" ] ;
fhir:label [ fhir:v "S.4.1.2#05" ] ;
    ( fhir:conformance [ fhir:v "SHOULD" ] ) ;
fhir:conditionality [ fhir:v false ] ;
fhir:requirement [ fhir:v "The system SHOULD provide the ability to render the history of data transmissions." ]
  ] [
    ( fhir:extension [
fhir:url [
fhir:v "http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent"^^xsd:anyURI ;
fhir:l <http://hl7.org/ehrs/uv/phrsfmr2/StructureDefinition/requirements-dependent>       ] ;
fhir:value [
a fhir:Boolean ;
fhir:v true       ]     ] ) ;
fhir:key [ fhir:v "PHRSFMR2-S.4.1.2-06" ] ;
fhir:label [ fhir:v "S.4.1.2#06" ] ;
    ( fhir:conformance [ fhir:v "SHOULD" ] ) ;
fhir:conditionality [ fhir:v false ] ;
fhir:requirement [ fhir:v "The system SHOULD provide the ability to de-identify data according to organizational policy and/or jurisdictional law." ]
  ] ) . #