Patient

Purpose

To track a patient, identify within shared systems and maintain complete records. To apply processes applicable to deceased patient requests, patient contact and urgency purposes. Data needed to support genetic interpretation, for PLCM to locate further patient ODS codes for a given test and to link patients to potential family members and their genetic results.

Notes

Mapped to Patient resource, extensions not in UKCore are under review. Representation of Karyotypic Sex is through an Observation with code under Karyotype (cell structure) - SCTID: 734840008 or Anomaly of sex chromosome (disorder) - SCTID: 95462004 (these codes are under review). Representation of pregnancy and gestation is under discussion.

It is expected that practitioner and organization details for GPs will be referenced from Patient.generalPractitioner (e.g. using ODS/SDS identifiers) rather than be included as FHIR resources within Test Request payloads, though the full FHIR mapping has been provided below for completeness.

Profiling for Procedure is currently in progress

Mapping

Source Data item Target FHIR Element HL7v2.5.1 Mapping Description
Patient - First name Patient.name.given PID-5.2 Patient's first name.
Patient - Surname Patient.name.family PID-5.1 Patient's last name.
Patient - Date of birth Patient.birthDate PID-7 Patient's date of birth.
Patient - Address Patient.address PID-11 Patient's home address.
Patient - Postcode Patient.address.postalCode PID-11.5 Patient's home postcode.
Patient - Country Patient.address.country PID-11.6 Patient's home country.
Patient - Life status at time of request Patient.deceasedBoolean (would be replaced by deceasedDateTime if date of death is known), representation of unknown implied by deceasedBoolean not being present PID-30 Patient's alive or deceased status.
Patient - Ethnicity Patient.extension:EthnicCategory PID-22 Patient's ethnicity. Will have the option 'unknown' available.
Patient - Sex assigned at birth Patient.extension:birthSex PID-8 Patient's phenotypic sex classification. The external physical characteristics of the person. Currently determined by the Dr at birth. Gender for PLCM.
Patient - Organisation responsibile for GP practice ODS code N/A obtained through parent of GP Practice as recorded within ODS, obtained through Patient.generalPractitioner PD1-4.14 ODS code of organisation responsible for the GP Practice where the patient is registered.
Patient - GP Practice ODS Code Patient.generalPractitioner.identifier (with system matching ODS NamingSystem) PD1-4.14 Patient's GP practice ODS code.
Patient - Gender Identity same as at birth N/A inferred through difference between Patient.extension:birthSex and Patient.extension:patient-genderIdentity N/A - not part of the HL7v2 standard, though PID-8 or an OBX segment could be used Confirmation if the patient's gender is the same as at birth.
Patient - Is from consanguinous union FamilyMemberHistory.extension = family-member-history-genetics-observation( Observation.code=842009 ) or Observation attached to Patient OBX-5 with appropriate SNOMED/READ/LOINC code The fact of biological parents being descended from the same ancestor.
Patient - GP full name Patient.generalPractitioner.display for general practitioner reference to practitioner (SDS identifier), not practice PD1-4.2 and PD1-4.3 Patient's GP's full name.
Patient - NHS number Patient.identifier:system = https://fhir.nhs.uk/Id/nhs-number PID-3 where PID-3.5=2.16.840.1.113883.2.1.3.2.4.18.23 Patient NHS number.
Patient - Local identifier Patient.identifier:system != https://fhir.nhs.uk/Id/nhs-number (local NamingSystem can be used, assigner determined through assigner field) PID-3 where PID-3.5 = 2.16.840.1.113883.2.1.3.2.4.18.24 Patient identification code such as an NHS number.
Patient - Reason for unavailable NHS number Patient.extension:nhsNumberUnavailableReason N/A, could use PID-32 as surrogate Reason for an NHS number not being provided.
Patient - Relationship to proband RelatedPerson.relationship (alingment to MDS valueset pending review) NK1-3 Relative's relationship to proband/index.
Patient - Gender Identity Patient.extension:patient-genderIdentity N/A - not part of the HL7v2 standard, though PID-8 or an OBX segment could be used Patient's stated gender. The gender by which the person is addressed. Determined by the patient.
Patient - Date of death Patient.deceasedDateTime PID-29 Patient's date/time of death.
Patient - Karyotypic sex Observation.code( subject=Patient, code = code under 734840008 or 95462004 as examples ) OBX-5 with appropriate SNOMED/READ/LOINC code Patient's genomic / karyotypic characteristics. Determined after laboratory testing.
Patient - Pregnancy gestation period Observation.component.valueDuration with code for gestation OBX-14 (subtracted from ORC-9) Patient's term of active pregnancy at point of test request.
Patient - Fetal gestation As above, though could be inferred through difference between Observation.effectiveDateTime for pregnancy and Procedure.performedDateTime for termination OBX-14 (subtracted from OBR-7 for termination procedure) Stage during patient pregnancy at which it terminated.
Patient - Estimated Delivery Date (EDD) As above, though could be inferred through Observation.effectiveDateTime for pregnancy + 40 weeks or new observation with code 161714006 OBX-14 + 40 weeks Patient's estimated delivery date.
Patient - Pregnancy type Inferred through presence of Procedure with codes under IUI/IVF (e.g. codes under 63487001) OBR segments with appropriate codes Type of conception.
Patient - IVF age of egg donor TBC Observation referencing IVF procedure (through partOf) with code = 433475001 (if category of over 35 is sufficient, otherwise code.display of "IVF age of egg donor") OBR segments with appropriate codes The age of the patient who donated the egg at the time of donation.
Patient - Diagnosed with or being treated for cancer TBC Inferred through attached Condition resources with code under 363346000 or Procedure etc. with reasonCode under same concept OBR segments with appropriate codes Has the patient been diagnosed with or are they being treated for cancer.
Patient - Had transplant Inferred through presence of Procedure( subject=Patient ) with code under 77465005 - Transplantation, alternatively, Observation with code 77465005 with valueBoolean=false Presence of OBR segment with OBR-44 code for transplant Has the patient ever had a transplant.
Patient - Type of transplant Procedure.code( subject=Patient, code= code under 77465005 ) OBR-44 What type of transplant the patient had. (Bone marrow / Stem cell)
Patient - Transplant date Procedure.performedDateTime( subject=Patient ) OBR-7 When the patient had the transplant.
Patient - Had transfusion Inferred through presence of Procedure( subject=Patient ) with code under 5447007 - Transfusion, alternatively, Observation with code 5447007 with valueBoolean=false Presence of OBR segment with OBR-44 code for transplant Has the patient ever had a transfusion.
Patient - Type of transfusion Procedure.code( subject=Patient, code= code under 5447007 ) OBR-7 What type of transfusion the patient has had. (Packed Red Cells /Plasma / Platelets)
Patient - Transfusion date Procedure.performedDateTime( subject=Patient ) OBR-7 When the patient had the transfusion.
Patient - Height (m) Observation.valueQuantity( code=54871000237100, subject=Patient) OBX-5 Patient's height.
Patient - Sexual orientation (pending review) Observation.value( subject=Patient, code=66621004) OBX-5 with appropriate SNOMED/READ/LOINC code Patient's sexual orientation.
Patient - Withheld identity reason Additional codes to be part of Patient.extension:nhsNumberUnavailableReason ValueSet (as per NHS Data Model and Dictionary, pending addition) N/A, could use PID-32 as surrogate Confirmation why the patient is withholding identity details.
Patient - GP's professional registration number Patient.generalPractitioner.identifier with system for appropriate registration authority PD1-4.1 Patient's GP's professional registration number.
Patient - Pedigree/Family Identifier Patient.identifier:pedigreeNumber Additional identifiers under PID-3 Patient's genetic/pedigree number which links their family.
Patient - Pregnancy status Observation.code( subject=Patient, code=77386006 ) OBX-5 with appropriate SNOMED/READ/LOINC code Patient's pregnancy status.