diff --git a/Consent/Consent-DataAccess-Example.json b/Consent/Consent-DataAccess-Example.json new file mode 100644 index 00000000..85455a43 --- /dev/null +++ b/Consent/Consent-DataAccess-Example.json @@ -0,0 +1,164 @@ +{ + "resourceType": "Consent", + "id": "Consent-DataAccess-Example", + "status": "active", + "scope": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy", + "display": "Privacy Consent" + } + ] + }, + "category": [ + { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "INFA", + "display": "information access" + } + ] + } + ], + "patient": { + "reference": "Patient/Patient-AnitaLamberts-Example", + "identifier": { + "system": "https://fhir.nhs.uk/Id/nhs-number", + "value": "8449303649" + } + }, + "dateTime": "2026-05-07T09:08:30Z", + "performer": [ + { + "reference": "Patient/Patient-AnitaLamberts-Example", + "identifier": { + "system": "https://fhir.nhs.uk/Id/nhs-number", + "value": "8449303649" + } + } + ], + "organization": [ + { + "identifier": { + "system": "https://fhir.hl7.org.uk/Id/ode-organization-code", + "value": "X26" + } + } + ], + "sourceReference": { + "reference": "QuestionnaireResponse/QuestionnaireResponse-ConsentQuestionnaire-Example" + }, + "policy": [ + { + "uri": "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" + } + ], + "provision": { + "type": "deny", + "provision": [ + { + "type": "permit", + "actor": [ + { + "role": { + "coding": [ + { + "code": "AUCG", + "system": "http://terminology.hl7.org/CodeSystem/v3-ParticipationFunction", + "display": "caregiver information receiver" + } + ] + }, + "reference": { + "identifier": { + "system": "https://fhir.nhs.uk/Id/nhs-number", + "value": "9999999999" + } + } + } + ], + "purpose": [ + { + "code": "TREAT", + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + } + ], + "data": [ + { + "meaning": "instance", + "reference": { + "reference": "Condition/Condition-MonogenicHearingLoss-Example" + } + } + ] + }, + { + "type": "permit", + "actor": [ + { + "role": { + "coding": [ + { + "code": "IRCP", + "system": "http://terminology.hl7.org/CodeSystem/v3-ParticipationType" + } + ] + }, + "reference": { + "reference": "Group/Group-GenomicResearchers-Example" + } + } + ], + "purpose": [ + { + "code": "HRESCH", + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + } + ], + "data": [ + { + "meaning": "related", + "reference": { + "reference": "DiagnosticReport/DiagnosticReport-AnitaLamberts-Example" + } + } + ] + }, + { + "type": "permit", + "actor": [ + { + "role": { + "coding": [ + { + "code": "PROV", + "system": "http://terminology.hl7.org/CodeSystem/v3-RoleClass" + } + ] + }, + "reference": { + "identifier": { + "system": "https://fhir.nhs.uk/Id/sds-user-id", + "value": "123456789012" + } + } + } + ], + "purpose": [ + { + "code": "TREAT", + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + } + ], + "class": [ + { + "code": "DiagnosticReport", + "system": "http://hl7.org/fhir/resource-types" + } + ] + } + ] + } +} \ No newline at end of file diff --git a/Consent/Consent-DataSharing-Example.json b/Consent/Consent-DataSharing-Example.json new file mode 100644 index 00000000..4c3c7174 --- /dev/null +++ b/Consent/Consent-DataSharing-Example.json @@ -0,0 +1,91 @@ +{ + "resourceType": "Consent", + "id": "Consent-DataSharing-Example", + "status": "proposed", + "scope": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy", + "display": "Privacy Consent" + } + ] + }, + "category": [ + { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "IDSCL", + "display": "information disclosure" + } + ] + } + ], + "patient": { + "reference": "Patient/Patient-AnitaLamberts-Example", + "identifier": { + "system": "https://fhir.nhs.uk/Id/nhs-number", + "value": "8449303649" + } + }, + "dateTime": "2026-05-07T09:08:30Z", + "performer": [ + { + "reference": "Patient/Patient-AnitaLamberts-Example", + "identifier": { + "system": "https://fhir.nhs.uk/Id/nhs-number", + "value": "8449303649" + } + } + ], + "organization": [ + { + "identifier": { + "system": "https://fhir.hl7.org.uk/Id/ods-organization-code", + "value": "X26" + } + } + ], + "sourceReference": { + "reference": "QuestionnaireResponse/QuestionnaireResponse-ConsentQuestionnaire-Example" + }, + "policy": [ + { + "uri": "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" + } + ], + "provision": { + "type": "deny", + "provision": [ + { + "type": "permit", + "actor": [ + { + "role": { + "coding": [ + { + "code": "PAT", + "system": "http://terminology.hl7.org/CodeSystem/v3-RoleClass" + } + ] + }, + "reference": { + "reference": "RelatedPerson/RelatedPerson-AnitaLambertsDeceasedPatient-Example", + "identifier": { + "system": "https://fhir.nhs.uk/Id/nhs-number", + "value": "8449303650" + } + } + } + ], + "purpose": [ + { + "code": "FAMRQT", + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + } + ] + } + ] + } +} \ No newline at end of file diff --git a/Consent/Consent-RoD-PheobeSmitham-Example.json b/Consent/Consent-RoD-PheobeSmitham-Example.json index 3ea23be1..24fcba2b 100644 --- a/Consent/Consent-RoD-PheobeSmitham-Example.json +++ b/Consent/Consent-RoD-PheobeSmitham-Example.json @@ -2,28 +2,28 @@ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmitham-Example", "status": "active", - "scope": { - "coding": [ - { - "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" - } - ] - }, - "category": [ - { - "coding": [ - { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" - } - ] - } - ], + "scope": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy", + "display": "Privacy Consent" + } + ] + }, + "category": [ + { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" + } + ] + } + ], "patient":{ - "reference":"Patient/Patient-PheobeSmitham-Example", + "reference": "Patient/Patient-PheobeSmitham-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307539" diff --git a/Consent/Consent-RoD-PheobeSmithamAttachmentData-Example.json b/Consent/Consent-RoD-PheobeSmithamAttachmentData-Example.json index 1526381e..37fa45ee 100644 --- a/Consent/Consent-RoD-PheobeSmithamAttachmentData-Example.json +++ b/Consent/Consent-RoD-PheobeSmithamAttachmentData-Example.json @@ -2,28 +2,28 @@ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmithamAttachmentData-Example", "status": "active", - "scope": { - "coding": [ - { - "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" - } - ] - }, - "category": [ - { - "coding": [ - { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" - } - ] - } - ], + "scope": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy", + "display": "Privacy Consent" + } + ] + }, + "category": [ + { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" + } + ] + } + ], "patient":{ - "reference":"Patient/Patient-PheobeSmitham-Example", + "reference": "Patient/Patient-PheobeSmitham-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307539" diff --git a/Consent/Consent-RoD-PheobeSmithamAttachmentURL-Example.json b/Consent/Consent-RoD-PheobeSmithamAttachmentURL-Example.json index 42009e32..3d461250 100644 --- a/Consent/Consent-RoD-PheobeSmithamAttachmentURL-Example.json +++ b/Consent/Consent-RoD-PheobeSmithamAttachmentURL-Example.json @@ -2,28 +2,28 @@ "resourceType": "Consent", "id": "Consent-RoD-PheobeSmithamAttachmentURL-Example", "status": "active", - "scope": { - "coding": [ - { - "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" - } - ] - }, - "category": [ - { - "coding": [ - { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" - } - ] - } - ], + "scope": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy", + "display": "Privacy Consent" + } + ] + }, + "category": [ + { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" + } + ] + } + ], "patient":{ - "reference":"Patient/Patient-PheobeSmitham-Example", + "reference": "Patient/Patient-PheobeSmitham-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307539" diff --git a/Consent/Consent-RoD-PheobeSmithamFather-Example.json b/Consent/Consent-RoD-PheobeSmithamFather-Example.json index 98914291..5681ce05 100644 --- a/Consent/Consent-RoD-PheobeSmithamFather-Example.json +++ b/Consent/Consent-RoD-PheobeSmithamFather-Example.json @@ -6,8 +6,8 @@ "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, @@ -15,9 +15,9 @@ { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" } ] } diff --git a/Consent/Consent-RoD-PheobeSmithamMother-Example.json b/Consent/Consent-RoD-PheobeSmithamMother-Example.json index 99e46cc0..961ff03f 100644 --- a/Consent/Consent-RoD-PheobeSmithamMother-Example.json +++ b/Consent/Consent-RoD-PheobeSmithamMother-Example.json @@ -6,8 +6,8 @@ "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, @@ -15,9 +15,9 @@ { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" } ] } diff --git a/Consent/Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example.json b/Consent/Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example.json index cd9ccc68..c1e0043e 100644 --- a/Consent/Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example.json +++ b/Consent/Consent-RoD-PheobeSmithamYoungPersonAssentForm-Example.json @@ -6,8 +6,8 @@ "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, @@ -15,9 +15,9 @@ { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" } ] } diff --git a/Consent/Consent-RoDAvailable-Example.json b/Consent/Consent-RoDAvailable-Example.json index a22adbb9..7bc341fb 100644 --- a/Consent/Consent-RoDAvailable-Example.json +++ b/Consent/Consent-RoDAvailable-Example.json @@ -6,8 +6,8 @@ "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, @@ -15,9 +15,9 @@ { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" } ] } diff --git a/Consent/Consent-RoDToFollow-Example.json b/Consent/Consent-RoDToFollow-Example.json index 80688d60..af9b75d8 100644 --- a/Consent/Consent-RoDToFollow-Example.json +++ b/Consent/Consent-RoDToFollow-Example.json @@ -6,8 +6,8 @@ "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, @@ -15,9 +15,9 @@ { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" } ] } diff --git a/Consent/Consent-RoDYoungPersonAssentFormAvailable-Example.json b/Consent/Consent-RoDYoungPersonAssentFormAvailable-Example.json index ffd13474..62d1012a 100644 --- a/Consent/Consent-RoDYoungPersonAssentFormAvailable-Example.json +++ b/Consent/Consent-RoDYoungPersonAssentFormAvailable-Example.json @@ -6,8 +6,8 @@ "coding": [ { "system": "http://terminology.hl7.org/CodeSystem/consentscope", - "code": "research", - "display": "Research" + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, @@ -15,9 +15,9 @@ { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" } ] } diff --git a/Consent/Consent-UGRConsentForResearch-Example.json b/Consent/Consent-UGRConsentForResearch-Example.json index 9a8640ff..fe9344be 100644 --- a/Consent/Consent-UGRConsentForResearch-Example.json +++ b/Consent/Consent-UGRConsentForResearch-Example.json @@ -1,70 +1,70 @@ { - "resourceType" : "Consent", - "id" : "Consent-UGRConsentForResearch-Example", - "meta" : { - "profile" : [ - "https://profiles.ihe.net/ITI/PCF/StructureDefinition/IHE.PCF.consentBasic" - ] - }, - "status" : "active", - "scope" : { - "coding" : [ + "resourceType": "Consent", + "id": "Consent-UGRConsentForResearch-Example", + "status": "active", + "scope": { + "coding": [ { - "system" : "http://terminology.hl7.org/CodeSystem/consentscope", - "code" : "patient-privacy" + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy" } ] }, - "category" : [ + "category": [ { - "coding" : [ + "coding": [ { - "system" : "http://loinc.org", - "code" : "59284-0", - "display" : "Consent" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "INFA", + "display": "information access" } ] } ], - "patient" : { - "reference" : "Patient/Patient-MeirLieberman-Example", + "patient": { + "reference": "Patient/Patient-MeirLieberman-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307873" } }, - "dateTime" : "2025-04-24", - "performer" : [ + "dateTime": "2025-04-24", + "performer": [ { - "reference" : "Patient/Patient-MeirLieberman-Example", + "reference": "Patient/Patient-MeirLieberman-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307873" } } ], - "organization" : [ + "organization": [ { - "identifier" : { - "system": "https://fhir.hl7.org.uk/Id/ODS-code", + "identifier": { + "system": "https://fhir.hl7.org.uk/Id/ods-organization-code", "value": "X26" } } ], - "sourceReference" : { - "reference" : "QuestionnaireResponse/QuestionnaireResponse-ConsentQuestionnaire-Example" + "sourceReference": { + "reference": "QuestionnaireResponse/QuestionnaireResponse-ConsentQuestionnaire-Example" }, - "policy" : [ + "policy": [ { - "uri" : "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" + "uri": "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" } ], - "provision" : { - "type" : "permit", - "purpose" : [ + "provision": { + "type": "deny", + "provision": [ { - "system" : "http://terminology.hl7.org/CodeSystem/v3-ActReason", - "code" : "HRESCH" + "type": "permit", + "purpose": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason", + "code": "HRESCH" + } + ] } ] } diff --git a/Consent/Consent-UGRGenomicData-Example.json b/Consent/Consent-UGRGenomicData-Example.json index 77d9484e..350b209f 100644 --- a/Consent/Consent-UGRGenomicData-Example.json +++ b/Consent/Consent-UGRGenomicData-Example.json @@ -1,88 +1,94 @@ { - "resourceType" : "Consent", - "id" : "Consent-UGRGenomicData-Example", - "status" : "active", - "scope" : { - "coding" : [ + "resourceType": "Consent", + "id": "Consent-UGRGenomicData-Example", + "status": "active", + "scope": { + "coding": [ { - "system" : "http://terminology.hl7.org/CodeSystem/consentscope", - "code" : "patient-privacy" + "system": "http://terminology.hl7.org/CodeSystem/consentscope", + "code": "patient-privacy", + "display": "Privacy Consent" } ] }, - "category" : [ + "category": [ { - "coding" : [ + "coding": [ { - "system" : "http://loinc.org", - "code" : "59284-0", - "display" : "Consent" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "INFA", + "display": "information access" } ] } ], - "patient" : { - "reference" : "Patient/Patient-MeirLieberman-Example", + "patient": { + "reference": "Patient/Patient-MeirLieberman-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307873" } }, - "dateTime" : "2025-04-24", - "performer" : [ + "dateTime": "2025-04-24T00:00:00Z", + "performer": [ { - "reference" : "Patient/Patient-MeirLieberman-Example", + "reference": "Patient/Patient-MeirLieberman-Example", "identifier": { "system": "https://fhir.nhs.uk/Id/nhs-number", "value": "9449307873" } } ], - "organization" : [ + "organization": [ { - "identifier" : { - "system": "https://fhir.hl7.org.uk/Id/ODS-code", + "identifier": { + "system": "https://fhir.hl7.org.uk/Id/ods-organization-code", "value": "X26" } } ], - "sourceReference" : { - "reference" : "QuestionnaireResponse/QuestionnaireResponse-ConsentQuestionnaire-Example" + "sourceReference": { + "reference": "QuestionnaireResponse/QuestionnaireResponse-ConsentQuestionnaire-Example" }, - "policy" : [ + "policy": [ { - "uri" : "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" + "uri": "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" } ], - "provision" : { - "type" : "permit", - "purpose" : [ - { - "system" : "http://terminology.hl7.org/CodeSystem/v3-ActReason", - "code" : "POPHLTH" - }, - { - "system" : "http://terminology.hl7.org/CodeSystem/v3-ActReason", - "code" : "HRESCH" - }, - { - "system" : "http://terminology.hl7.org/CodeSystem/v3-ActReason", - "code" : "HOPERAT" - } - ], - "class" : [ - { - "system" : "http://hl7.org/fhir/resource-types", - "code" : "DocumentReference", - "display" : "DocumentReference" - } - ], - "data" : [ + "provision": { + "type": "deny", + "provision": [ { - "meaning" : "instance", - "reference" : { - "reference" : "DocumentReference/DocumentReference-PharmCAT-Example" - } + "type": "permit", + "purpose": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason", + "code": "POPHLTH" + }, + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason", + "code": "HRESCH" + }, + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActReason", + "code": "HOPERAT" + } + ], + "class": [ + { + "system": "http://hl7.org/fhir/resource-types", + "code": "DocumentReference", + "display": "DocumentReference" + } + ], + "data": [ + { + "meaning": "instance", + "reference": { + "reference": "DocumentReference/DocumentReference-PharmCAT-Example" + } + } + ] } ] } diff --git a/Consent/UKCore-Consent-MichaelJonesConsent-Example-minimal.json b/Consent/UKCore-Consent-MichaelJonesConsent-Example-minimal.json index 76eaedb1..b92c2ebb 100644 --- a/Consent/UKCore-Consent-MichaelJonesConsent-Example-minimal.json +++ b/Consent/UKCore-Consent-MichaelJonesConsent-Example-minimal.json @@ -56,7 +56,7 @@ "language": "en-GB", "url": "https://files.genomicsengland.co.uk/forms/Participant-consent-form-for-patients-with-cancer-or-suspected-cancer-C1.pdf", "size": 539588, - "title" : "Participant-consent-form-for-patients-with-cancer-or-suspected-cancer-C1_MJ", + "title": "Participant-consent-form-for-patients-with-cancer-or-suspected-cancer-C1_MJ", "creation": "2022-07-11T09:00:00Z" }, "policy": [ diff --git a/Consent/UKCore-Consent-MichaelJonesConsent-Example.json b/Consent/UKCore-Consent-MichaelJonesConsent-Example.json index 34693616..76054c6d 100644 --- a/Consent/UKCore-Consent-MichaelJonesConsent-Example.json +++ b/Consent/UKCore-Consent-MichaelJonesConsent-Example.json @@ -58,7 +58,7 @@ "language": "en-GB", "url": "https://files.genomicsengland.co.uk/forms/Participant-consent-form-for-patients-with-cancer-or-suspected-cancer-C1.pdf", "size": 539588, - "title" : "Participant-consent-form-for-patients-with-cancer-or-suspected-cancer-C1_MJ", + "title": "Participant-consent-form-for-patients-with-cancer-or-suspected-cancer-C1_MJ", "creation": "2022-07-11T09:00:00Z" }, "policy": [ diff --git a/StructureDefinition/NHSEngland-Consent-GenomicsPCF.json b/StructureDefinition/NHSEngland-Consent-GenomicsPCF.json index 5c7f330a..33c04078 100644 --- a/StructureDefinition/NHSEngland-Consent-GenomicsPCF.json +++ b/StructureDefinition/NHSEngland-Consent-GenomicsPCF.json @@ -51,25 +51,25 @@ } }, { - "id": "Consent.scope.coding:codingRoD", + "id": "Consent.scope.coding:codingGenomics", "path": "Consent.scope.coding", - "sliceName": "codingRoD", + "sliceName": "codingGenomics", "definition": "For WGS RoD this SHALL be fixed to the below code:" }, { - "id": "Consent.scope.coding:codingRoD.system", + "id": "Consent.scope.coding:codingGenomics.system", "path": "Consent.scope.coding.system", "fixedUri": "http://terminology.hl7.org/CodeSystem/consentscope" }, { - "id": "Consent.scope.coding:codingRoD.code", + "id": "Consent.scope.coding:codingGenomics.code", "path": "Consent.scope.coding.code", - "fixedCode": "research" + "fixedCode": "patient-privacy" }, { - "id": "Consent.scope.coding:codingRoD.display", + "id": "Consent.scope.coding:codingGenomics.display", "path": "Consent.scope.coding.display", - "fixedString": "Research" + "fixedString": "Privacy Consent" }, { "id": "Consent.category", @@ -88,12 +88,46 @@ "id": "Consent.category:categoryRoD", "path": "Consent.category", "sliceName": "categoryRoD", + "definition": "Fixed to `http://terminology.hl7.org/CodeSystem/v3-ActCode|RESEARCH (research information access)` for Order Management Consent for NGRL/RoD.", + "max": "1", "fixedCodeableConcept": { "coding": [ { - "system": "http://terminology.hl7.org/CodeSystem/consentcategorycodes", - "code": "research", - "display": "Research Information Access" + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "RESEARCH", + "display": "research information access" + } + ] + } + }, + { + "id": "Consent.category:categoryUGRDataAccess", + "path": "Consent.category", + "sliceName": "categoryUGRDataAccess", + "definition": "Fixed to `http://terminology.hl7.org/CodeSystem/v3-ActCode|INFA (information access)` for providing access to the patient's UGR for specific purposes, as described by the UGR lenses below.", + "max": "1", + "fixedCodeableConcept": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "INFA", + "display": "information access" + } + ] + } + }, + { + "id": "Consent.category:categoryUGRDataSharing", + "path": "Consent.category", + "sliceName": "categoryUGRDataSharing", + "definition": "Fixed to `http://terminology.hl7.org/CodeSystem/v3-ActCode|IDSCL (information disclosure)` for providing access to a relative's healthcare professional, to inform their care, e.g. in the case of familial/cascade testing.", + "max": "1", + "fixedCodeableConcept": { + "coding": [ + { + "system": "http://terminology.hl7.org/CodeSystem/v3-ActCode", + "code": "IDSCL", + "display": "information disclosure" } ] } @@ -116,9 +150,15 @@ } ] }, + { + "id": "Consent.dateTime", + "path": "Consent.dateTime", + "definition": "SHALL be the time the Consent record was created. For UGR Consent, likely auto-populated by the system." + }, { "id": "Consent.performer", "path": "Consent.performer", + "definition": "MAY reference a RelatedPerson/Patient or potentially PractitionerRole if consent is being provided via another individual e.g. a proxy, otherwise SHOULD reference the patient themself", "type": [ { "code": "Reference", @@ -137,10 +177,36 @@ } ] }, + { + "id": "Consent.organization", + "path": "Consent.organization", + "slicing": { + "discriminator": [ + { + "type": "pattern", + "path": "$this" + } + ], + "rules": "open" + } + }, + { + "id": "Consent.organization:organizationUGR", + "path": "Consent.organization", + "sliceName": "organizationUGR", + "definition": "SHALL be fixed to the ODS code for NHS England (X26) as this is the managing organisation for the UGR consents.", + "max": "1", + "fixedReference": { + "identifier": { + "system": "https://fhir.nhs.uk/Id/ods-organization-code", + "value": "X26" + } + } + }, { "id": "Consent.source[x]", "path": "Consent.source[x]", - "definition": "SHALL be present for RoD entities (where the Consent resource provides metadata wrapping around a [Record of Discussion Form](https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form/). The Source element MAY either be:\r\nA pointer to the location of the PDF version of the RoD, either hosted by the source/client system\r\nAccessed via NRL (via a DocumentReference resource)\r\nEmbedded within the message payload, base64 encoded (using sourceAttachment)\r\nA reference to a QuestionnaireResponse resource (using sourceReference), if this has been collected in a structured format, using the Questionnaire-Genomic Testing RoD template." + "definition": "SHALL be present for RoD entities (where the Consent resource provides metadata wrapping around a [Record of Discussion Form](https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form/). The Source element MAY either be:\r\nA pointer to the location of the PDF version of the RoD, either hosted by the source/client system\r\nAccessed via NRL (via a DocumentReference resource)\r\nEmbedded within the message payload, base64 encoded (using sourceAttachment)\r\nA reference to a QuestionnaireResponse resource (using sourceReference), if this has been collected in a structured format, using the Questionnaire-Genomic Testing RoD template.\r\n\r\nNot relevant for UGR consent resources as this is generated automatically on creation of a UGR, though IHE PCF requires a reference or attachment. This MAY be a reference to a QuestionnaireResponse representing the patients consent selections, e.g. via the NHS App." }, { "id": "Consent.policy", @@ -170,10 +236,21 @@ "path": "Consent.policy.uri", "fixedUri": "https://www.england.nhs.uk/publication/nhs-genomic-medicine-service-record-of-discussion-form" }, + { + "id": "Consent.policy:policyUGR", + "path": "Consent.policy", + "sliceName": "policyUGR", + "definition": "MAY be used to reference the NHS England Privacy Policy" + }, + { + "id": "Consent.policy:policyUGR.uri", + "path": "Consent.policy.uri", + "fixedUri": "https://www.england.nhs.uk/wp-content/uploads/2018/05/nhs-england-privacy-notice-v1.77.pdf" + }, { "id": "Consent.provision", "path": "Consent.provision", - "definition": "Used to reference the ServiceRequest the Consent applies to. SHALL be present where the consent only applies to a specific test." + "definition": "Within Order Management used to reference the ServiceRequest the Consent applies to. SHALL be present where the consent only applies to a specific test.\r\n\r\nIn the context of the UGR, the top level `type` SHOULD represent the patient's overall consent to use of their data e.g. as indicated via their National Data Opt-Out selection. Sub-level `provision` elements SHOULD be used to represent exceptions to the higher level provision, though MAY be used to explicitly permit usage of data for specific purposes, where the higher-level provision is of type 'permit'. " }, { "id": "Consent.provision.data:iData", @@ -196,6 +273,177 @@ ] } ] + }, + { + "id": "Consent.provision.provision", + "path": "Consent.provision.provision", + "slicing": { + "discriminator": [ + { + "type": "pattern", + "path": "$this" + } + ], + "rules": "open" + } + }, + { + "id": "Consent.provision.provision:provisionUGR", + "path": "Consent.provision.provision", + "sliceName": "provisionUGR" + }, + { + "id": "Consent.provision.provision:provisionUGR.type", + "path": "Consent.provision.provision.type", + "min": 1 + }, + { + "id": "Consent.provision.provision:provisionUGR.period", + "path": "Consent.provision.provision.period", + "max": "0" + }, + { + "id": "Consent.provision.provision:provisionUGR.actor", + "path": "Consent.provision.provision.actor", + "definition": "MAY be used to specify a class of individuals included within the consent statement, e.g. access for direct care by healthcare professionals, or for individuals, e.g. access to patient proxy." + }, + { + "id": "Consent.provision.provision:provisionUGR.action", + "path": "Consent.provision.provision.action", + "max": "0" + }, + { + "id": "Consent.provision.provision:provisionUGR.securityLabel", + "path": "Consent.provision.provision.securityLabel", + "max": "0" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose", + "path": "Consent.provision.provision.purpose", + "slicing": { + "discriminator": [ + { + "type": "value", + "path": "code" + } + ], + "rules": "open" + }, + "definition": "SHALL be used for encoding the four lenses of data access", + "min": 1, + "binding": { + "strength": "required" + } + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeDirectCare", + "path": "Consent.provision.provision.purpose", + "sliceName": "purposeDirectCare", + "max": "1" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeDirectCare.system", + "path": "Consent.provision.provision.purpose.system", + "min": 1, + "fixedUri": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeDirectCare.code", + "path": "Consent.provision.provision.purpose.code", + "min": 1, + "fixedCode": "TREAT" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeResearch", + "path": "Consent.provision.provision.purpose", + "sliceName": "purposeResearch", + "max": "1" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeResearch.system", + "path": "Consent.provision.provision.purpose.system", + "min": 1, + "fixedUri": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeResearch.code", + "path": "Consent.provision.provision.purpose.code", + "min": 1, + "fixedCode": "HRESCH" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposePopulationHealth", + "path": "Consent.provision.provision.purpose", + "sliceName": "purposePopulationHealth", + "max": "1" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposePopulationHealth.system", + "path": "Consent.provision.provision.purpose.system", + "min": 1, + "fixedUri": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposePopulationHealth.code", + "path": "Consent.provision.provision.purpose.code", + "min": 1, + "fixedCode": "POPHLTH" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeManagementInformation", + "path": "Consent.provision.provision.purpose", + "sliceName": "purposeManagementInformation", + "max": "1" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeManagementInformation.system", + "path": "Consent.provision.provision.purpose.system", + "min": 1, + "fixedUri": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeManagementInformation.code", + "path": "Consent.provision.provision.purpose.code", + "min": 1, + "fixedCode": "HOPERAT" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeFamilyLinkage", + "path": "Consent.provision.provision.purpose", + "sliceName": "purposeFamilyLinkage", + "max": "1" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeFamilyLinkage.system", + "path": "Consent.provision.provision.purpose.system", + "min": 1, + "fixedUri": "http://terminology.hl7.org/CodeSystem/v3-ActReason" + }, + { + "id": "Consent.provision.provision:provisionUGR.purpose:purposeFamilyLinkage.code", + "path": "Consent.provision.provision.purpose.code", + "min": 1, + "fixedCode": "FAMRQT" + }, + { + "id": "Consent.provision.provision:provisionUGR.class", + "path": "Consent.provision.provision.class", + "definition": "MAY be used to indicate the classes of data the provision applies to, where whole classes of data, e.g. DiagnosticReports, are consented to, rather than specific instances. " + }, + { + "id": "Consent.provision.provision:provisionUGR.code", + "path": "Consent.provision.provision.code", + "max": "0" + }, + { + "id": "Consent.provision.provision:provisionUGR.dataPeriod", + "path": "Consent.provision.provision.dataPeriod", + "max": "0" + }, + { + "id": "Consent.provision.provision:provisionUGR.data", + "path": "Consent.provision.provision.data", + "definition": "SHOULD be used where the consent applies to specific instances of data, such as a single report or sequence.\r\n\r\n`data.meaning` MAY use any of the codes specified in the [consent-data-meaning ValueSet](https://www.hl7.org/fhir/R4/valueset-consent-data-meaning.html), as data may not be useful in isolation, e.g. a report without the referenced observations. However, the `authoredBy` code is not expected to be used for the UGR." } ] }