StructureDefinition UKCore-Patient

The focal resource for recording who a test order and genomic report are for.

It is expected that client's will need to post Patient resources to the central GMS as some demographic information specific to Genomics will not have been captured within other systems such as PDS.

For patients included within PDS, it is expected source systems SHOULD only send genomic specific information not recorded against PDS, e.g. birthSex, genomic specific identifiers and a link to the PDS record, as well as the NHS number identifier. (NOTE: examples provided for patient resources are fully expanded to illustrate how information should be structured but any infomation already recorded by PDS SHOULD NOT be duplicated within the genomic order management services). Querying patient demographic information, will be supported using the search parameters provided by the Genomic Order Management Service, whch will pass through parameters to PDS where demographics are stored against this system. Client systems will then be required to follow the PDS link within the Genomics-Patient record to retrieve the PDS patient.

It is a requirement on source systems that patient NHS numbers are traced and verified with PDS, if the patient is registered with PDS, before creation of patient resources on the Genomic Order Management broker

For patients not included on PDS, e.g. private/overseas patients or fetal records, the requester SHOULD send all information necessary to facilitate testing and interpretation of the request. Where this patient is later registered on PDS, identified through assignment of an NHS number, demographic details SHALL be stripped from the genomic record to avoid data duplication.

Alternatively, systems MAY opt to include pointers to the Patient resource on their local system, though the mechanism preferred by the NHS England Genomics Unit has yet to be decided.

Profile url FHIR Module Normative Status
https://fhir.hl7.org.uk/StructureDefinition/UKCore-Patient UKCore trial-use

idΣ0..1string
metaΣ0..1Meta
implicitRulesΣ ?!0..1uri
language0..1codeBinding
text0..1Narrative
contained0..*Resource
id0..1string
extensionI0..0Extension
url1..1uriFixed Value
valueAddressAddress
birthSexI0..1Extension(CodeableConcept)
id0..1string
extensionI0..0Extension
url1..1uriFixed Value
valueBooleanboolean
contactPreferenceI0..1Extension(Complex)
deathNotificationStatusI0..1Extension(Complex)
ethnicCategoryI0..1Extension(CodeableConcept)
fetalStatusI0..1Extension(code)
residentialStatusI0..1Extension(CodeableConcept)
id0..1string
extensionI0..0Extension
url1..1uriFixed Value
valueBooleanboolean
nhsNumberUnavailableReasonI0..1Extension(CodeableConcept)
modifierExtension?! I0..*Extension
id0..1string
nhsNumberVerificationStatusI0..1Extension(CodeableConcept)
useΣ ?!0..1codeBinding
typeΣ0..1CodeableConceptBinding
systemΣ1..1uriFixed Value
valueΣ1..1string
periodΣ I0..1Period
assignerΣ I0..1Reference(Organization)
activeS Σ ?!0..1boolean
nameS Σ0..*HumanName
id0..1string
extensionI0..*Extension
id0..1string
otherContactSystemI0..1Extension(CodeableConcept)
value0..1System.String
valueΣ0..1string
useΣ ?!0..1codeBinding
rankΣ0..1positiveInt
periodΣ I0..1Period
genderS Σ0..1codeBinding
id0..1string
id0..1string
extensionI0..0Extension
url1..1uriFixed Value
valueDateTimedateTime
value0..1System.Date
deceasedBooleanboolean
deceasedDateTimedateTime
id0..1string
addressKeyI0..*Extension(Complex)
useΣ ?!0..1codeBinding
typeΣ0..1codeBinding
textΣ0..1string
lineΣ0..*string
cityΣ0..1string
districtΣ0..1string
stateΣ0..1string
postalCodeΣ0..1string
countryΣ0..1string
periodΣ I0..1Period
maritalStatus0..1CodeableConceptBinding
multipleBirthBooleanboolean
multipleBirthIntegerinteger
photoI0..*Attachment
id0..1string
contactRankI0..1Extension(positiveInt)
copyCorrespondenceIndicatorI0..1Extension(boolean)
modifierExtensionΣ ?! I0..*Extension
relationship0..*CodeableConceptBinding
name0..1HumanName
id0..1string
extensionI0..*Extension
id0..1string
otherContactSystemI0..1Extension(CodeableConcept)
value0..1System.String
valueΣ0..1string
useΣ ?!0..1codeBinding
rankΣ0..1positiveInt
periodΣ I0..1Period
address0..1Address
gender0..1codeBinding
organizationI0..1Reference(Organization)
periodI0..1Period
id0..1string
id0..1string
id0..1string
extensionI0..0Extension
url1..1uriFixed Value
valueCodingCoding
id0..1string
extensionI0..0Extension
url1..1uriFixed Value
valueCodingCoding
url1..1uriFixed Value
modifierExtensionΣ ?! I0..*Extension
language1..1CodeableConceptBinding
preferred0..1boolean
generalPractitionerI0..*Reference(Organization | Practitioner | PractitionerRole)
managingOrganizationS Σ I0..1Reference(Organization)
id0..1string
extensionI0..*Extension
modifierExtensionΣ ?! I0..*Extension
otherΣ I1..1Reference(Patient | RelatedPerson)
typeΣ1..1codeBinding


FHIRMDSHL7v2
Patient.identifierPatient - NHS number, Patient - Local identifier, Patient - Pedigree/Family Identifier, Fetus - Local identifier, Previous genomic report - Patient's NHS number, Previous genomic report - Patient's alternative identifier, Previous genomic report - Patient's clinical genetics number, Previous genomic report - Patient's pedigree numberPID-3
Patient.extension:nhsNumberUnavailableReasonPatient - Reason for unavailable NHS number, Patient - Withheld identity reasonN/A, could use PID-32 as surrogate
Patient.name.prefixPatient - TitlePID-5.5
Patient.name.givenPatient - First name, Previous genomic report - Patient's first namePID-5.2
Patient.name.familyPatient - Surname, Previous genomic report - Patient's surnamePID-5.1
Patient.birthDatePatient - Date of birth, PLCM activity - Patient age at activity date, Previous genomic report - Patient's date of birthPID-7, Age derived from the difference between PID-7 and TQ1-7 for the relevant activity
Patient.addressPatient - Address, Previous genomic report - Patient's addressPID-11
Patient.address.postalCodePatient - Postcode, Previous genomic report - Patient's post codePID-11.5
Patient.address.countryPatient - Country, Previous genomic report - Patient's countryPID-11.6
Patient.deceasedBooleanPatient - Life status at time of requestPID-30
Patient.deceasedDateTimePatient - Date of deathPID-29
Patient.extension:EthnicCategoryPatient - EthnicityPID-22
Patient.extension:birthSexPatient - Sex assigned at birthPID-8
Patient.extension:patient-genderIdentityPatient - Gender IdentityN/A - not part of the HL7v2 standard, though PID-8 or an OBX segment could be used
Patient.generalPractitionerPatient - GP Practice ODS Code, Patient - GP full name, Patient - GP GMC numberPD1-4
Patient.genderFetus - Observed sexPID-8

Additional Guidance

extension:UKCore-birthSex

Extension used for recording the phenotypic sex of the patient, as recorded at birth.
    {
      "url": "https://fhir.hl7.org.uk/StructureDefinition/Extension-UKCore-BirthSex",
      "valueCodeableConcept": {
        "coding": [
          {
            "system": "http://terminology.hl7.org/CodeSystem/v3-AdministrativeGender",
            "code": "M",
            "display": "Male"
          }
        ]
      }
    }

identifier

SHALL be present for Patients within the Genomic Order Management ecosystem. It is preferred that all patients with an NHS number have this included within the Patient resource upon submission of a test order. Patient who do not have an NHS number SHOULD have a temporary one registered/assigned with PDS.

For patient records where the NHS number has been traced from PDS, the trace status SHOULD be provided within the NHS Number identifier slice.

Additional identifiers SHOULD include an appropriate naming system scheme which clearly identifies the assigner (to disambiguate the identifier from other resources where these are not nationally unique). Alternatively, the OID for local identifier MAY be used, with the 'assigner' organization explicitly referenced.

"identifier":  [
        {
            "system": "https://fhir.nhs.uk/Id/nhs-number",
            "value": "9449307946",
            "extension":  [
                {
                    "url": "https://fhir.hl7.org.uk/StructureDefinition/Extension-UKCore-NHSNumberVerificationStatus",
                    "valueCodeableConcept": {
                        "coding":  [
                            {
                                "system": "https://fhir.hl7.org.uk/CodeSystem/UKCore-NHSNumberVerificationStatusEngland",
                                "version": "2.2.0",
                                "code": "01",
                                "display": "Number present and verified"
                            }
                        ]
                    }
                }
            ]
        },
        {
            "system": "urn:oid:2.16.840.1.113883.2.1.3.2.4.18.24",
            "value": "RWT14789",
            "assigner": {
                "identifier": {
                    "system": "https://fhir.nhs.uk/Id/ods-organization-code",
                    "value": "RAX01"
                }
            }
        }
    ],

generalPractitioner

Where patients are registered with a General Practitioner within the UK, both the ODS code for the practice and GMP number for the practitioner SHOULD be provided, where known, as separate objects within the generalPractitioner array.
"generalPractitioner":  [
        {
            "identifier": {
                "system": "https://fhir.hl7.org.uk/Id/gmp-number",
                "value": "G9999999"
            },
            "display": "Dr. Aero Smith"
        },
        {
            "identifier": {
                "system": "https://fhir.hl7.org.uk/Id/ODS-code",
                "value": "AP123"
            },
            "display": "anywhere place"
        }
    ],

link

For patient records where additional information exists elsewhere, for example, within PDS or the source system EHR, this MAY be referenced through the link field, specifying the url through which the related patient information can be accessed.
"link":  [
        {
            "other": {
                "reference": "https://api.service.nhs.uk/personal-demographics/FHIR/R4/Patient/9449307946"
            },
            "type": "seealso"
        }
    ]