New Zealand Rheumatic Fever FHIR Implementation Guide
0.4.9 - draft

New Zealand Rheumatic Fever FHIR Implementation Guide, published by Te Whatu Ora. This guide is not an authorized publication; it is the continuous build for version 0.4.9 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/tewhatuora/fhir-rheumatic-fever/ and changes regularly. See the Directory of published versions

Artifacts Summary

This page provides a list of the FHIR artifacts defined as part of this implementation guide.

canonical instance definitions

canonical instance definitions

LeadProvidersGroup

Group which identifies all NZ lead provider organisations for rheumatic fever secondary prevention

Medications and Follow-up Guidance Questionnaire

Gathers information in secondary prophylaxis planning which guides subsequent medication appointments and follow-up

Oral Secondary Prophylaxis Health Assessment Questionnaire

Gathers information about patient health at an oral secondary prophylaxis medication appointment

Patient & whanau goals and preferences questionnaire

Gathers patient and whanau preferences and goals for rheumatic fever care

Secondary Prophylaxis Health Assessment Questionnaire

Gathers information about patient health at a secondary prophylaxis medication appointment

Secondary prophylaxis medication allergy questionnaire

Describes any known patient allergies to medications used in rheumatic fever secondary prophylaxis

consent

Consent profiles/definitions and examples

Consent-Data-Active-AfterAppointments

An active, 3 year, patient DATA consent obtained by the Te Tai Tokerau Rheumatic Fever Service, with sample data.references

Consent-Data-Active-AfterDiagnosisAndPlanning

An active, 3 year, patient DATA consent obtained by the Te Tai Tokerau Rheumatic Fever Service, with sample data.references

Consent-Data-Active-Initial

An active, 3 year, patient DATA consent obtained by the Te Tai Tokerau Rheumatic Fever Service, with sample data.references

Consent-Data-OnBehalfByRelatedPerson

An active, 3 year, patient DATA consent given on patient's behalf by their relative, as obtained by the Te Tai Tokerau Rheumatic Fever Service, with sample data.references

Consent-Data-OptOut

Example of consent when the patient OPTED OUT of data sharing on 01/09/2023

Consent-Data-Provisional

A provisional patient DATA consent recorded by Te Tai Tokerau Rheumatic Fever Service in anticipation of pending patient signed consent form

Behavior: Capability Statements

The following artifacts define the specific capabilities that different types of systems are expected to have in order to comply with this implementation guide. Systems conforming to this implementation guide are expected to declare conformance to one or more of the following capability statements.

Rheumatic Fever FHIR API Capability Statement

NZ Rheumatic Fever FHIR API

Structures: Resource Profiles

These define constraints on FHIR resources for systems conforming to this implementation guide.

Rheumatic Fever Care Team

Identifies parties involved in secondary prophylaxis (preventative treatment) for a patient. Members typically comprise rheumatic fever service Organizations and Practitioners especially nurses

Rheumatic Fever CarePlan

Profiles shared care plans used in NZ for management of rheumatic fever cases with suspected acute rheumatic fever

Rheumatic Fever Condition

Extends NzCondition to add classifiers for RHD severity, diagnostic certainty and symptomatic status and specifies groups of diagnosic evidence that can be attached.

Rheumatic Fever Diagnosis Group

This profile constrains the codes valid on an Observation so it can represent groups of rheumatic fever diagnosis data.

Rheumatic Fever Medication Request

Describes medication planned for a rheumatic fever patient over a period of time. Referenced as an activity in rheumatic fever care plans. Includes an extension defining the medication frequency which determines the scheduling intervals for Appointments.

Rheumatic Fever Patient

NzPatient-based FHIR resource for representing rheumatic fever patients

Structures: Extension Definitions

These define constraints on FHIR data types for systems conforming to this implementation guide.

Care Plan status change history

Captures metadata about a change in careplan status

Certainty of rheumatic fever diagnosis

Certainty of rheumatic fever diagnosis

Codifies role taken by a whanau member of patient's care team

Codifies role this whanau member plays in a patient's care team

Date of assessment of rheumatic heart disease severity

Tracks the RF-specific date when rheumatic heart disease severity was assessed.

Denotes if the member is to be used a primary contact

Set to true if this whanau member acts as a primary contact for the patient

Frequency of rheumatic fever medication

Frequency of rheumatic fever medication to be set when medication is planned for an RF patient

Lifelong secondary prophylaxis recommended?

Indicates that a rheumatic fever patient has been recommended lifelong prophylaxis

Relationship of whanau member to patient in care team

In patient care teams, codifies this whanau member's relationship to the patient

Severity of rheumatic heart disease

Severity of rheumatic heart disease determines the severity of a patient's rheumatic fever condition.

Symptom status at diagnosis

Symptom status at time of rheumatic fever diagnosis

Terminology: Value Sets

These define sets of codes used by systems conforming to this implementation guide.

Codes for component observations of NZ rheumatic fever diagnosis

This value set combines SNOMED internaional codes with a handful of special codes for NZ RF diagnosis observation data coding

Codes for rheumatic fever diagnosis observation grouping

This value set defines SNOMED codes which represent groupings of diagnosis data captured by rheumatic fever Observation instances

Codes for rheumatic heart disease symptom status at time of diagnosis

This value set defines codes which describe whether a patient was symptomatic at the time of rheumatic fever diagnosis

Codes for summary diagnosis of the rheumatic fever condition

This value set defines the codes that summarise the diagnosis of a patient with a rheumatic fever condition

External identifier type codes

This value set defines the codes that differentiate types of external identifiers held in FHIR resource Identifiers

Generic QuestionnaireResponse yes/no question answer codes

This value set defines valid answer codes for a yes/no-type questions where it's important to be able to record an unknown or data not available response

Rheumatic fever certainty of diagnosis codes

This value set defines the codes that represent the certainty of a diagnosis of rheumatic fever in a patient.

Rheumatic fever medication allergy codes

This value set includes codes for the RF secondary prophylaxis medications / substances a patient has an allergic reaction to

Rheumatic fever patient care team participant role codes

This value set defines relationships people can take in a rheumatic fever patient care team, and can also be used to define a consent-on-behalf relationship

Rheumatic fever planned medication frequency codes

This value set defines codes for standard frequencies of secondary prophylaxis medication planning (that is, appointment intervals)

Rheumatic heart disease severity codes

This value set defines codes for the severity of rheumatic heart disease which determines the severity of a patient's rheumatic fever condition

Terminology: Code Systems

These define new code systems used by systems conforming to this implementation guide.

NZ-specific terminology in rheumatic fever data representation

This system defines standard codes used throughout this Implementation Guide for New Zealand rheumatic fever data representation

Example: Example Instances

These are example instances that show what data produced and consumed by systems conforming with this implementation guide might look like.

BenzathineMedication

Example of medication used in rheumatic fever secondary prophylaxis (prevention) as NZMT terminology

Care plan closed after one appointment completed

Example of a RF care plan CLOSED after the patient recently went overseas.

Care plan in initial state after Sage Westbrook registered

RF care plan where patient registered and basic questionnaires completed, but no detail diagnosis or appointments yet.

Care plan in initial state after Sage Westbrook registered (R-labelled)

RF care plan where patient registered and basic questionnaires completed, but no detail diagnosis or appointments yet.

Care plan on-hold after first appointment completed

Example of an RF care plan that has been put ON-HOLD after the first secondary prophylaxis appointment, because the patient is overseas.

Care plan ready to go with all medication planned and appointments booked

Example of an RF care plan with secondary prophylaxis medication planned and three appointments booked.

Care plan with secondary propylaxis underway - two appointments completed

An RF care plan after the first secondary prophylaxis and follow-up appointments attended.

DentalFollowUpEncounter

Example of a rheumatic fever patient encounter for dental specialist follow-up

DiagnosisDetail-ECHO

Illustrates collection of ECHO cardiogram diagnosis evidence in a rheumatic fever case

DiagnosisDetail-JonesCriteria

Illustrates a FHIR Observation describing a Jones (twelve) criteria diagnosis for a rheumatic fever patient

DiagnosisDetail-StrepEvidence

Illustrates primary strep diagnosis evidence (Strepococcus group A infection is the cause of rheumatic fever)

DiagnosisDetail-StrepEvidence-Secondary

Illustrates second strep diagnosis evidence from repeated ASOT and Anti-Dnase B tests

DiagnosisEncounter

Encounter capturing context of a patient's rheumatic fever diagnosis

FollowUp-Dental-August-Booked

Example of a planned patient follow-up with the dentist

FollowUp-Dental-August-Fulfilled

Example of a planned patient follow-up with the dentist

HealthAssessmentAtOralProphylaxisEncounter

Example of patient health assessment from an encounter for oral secondary prophylaxis medication.

HealthAssessmentAtSecondaryProphylaxisEncounter

Example assessment of Sage's health at her August secondary prophylaxis appointment.

MedicationStatement-August

Illustrates details of secondary prophylaxis medication given to a patient at an appointment

MedicationsAndFollowUpGuidanceQuestionnaireResponse

Example payload demonstrating guidance defined for secondary prophylaxis patient medication and follow-up.

PaniaPunga

An example rheumatic fever patient who is Māori ethnicity and speaks Māori

PatientMedicationAllergyQuestionnaireResponse

Example payload demonstrating data collected about a patient's allergies to RF medication.

PatientWhanauGoalsPreferencesQuestionnaireResponse

Example payload demonstrating patient/whanau expressed preferences and goals for rheumatic fever care.

PlannedBenzathineMedication

Illustrates a request for active secondary prophylaxis medication that can appear in a rheumatic fever care plan

PlannedBenzathineMedicationWithLignocaine

Illustrates planning of benzathine prophylaxis medication with a second embedded MedicationRequest for lignocaine pain relief

SageWestbrook

Example rheumatic fever patient who is a teenager of NZ European ethnicity, lives near Whangārei

SageWestbrookAndWhanau

Example of a teenager patient with whanau members defined as patient contacts

SecondaryProphylaxisAppointment-August-Booked

Example of a booked patient appointment for rheumatic fever secondary prophylaxis treatment (injection)

SecondaryProphylaxisAppointment-August-Fulfilled

Example of a fulfilled (completed) patient appointment for rheumatic fever secondary prophylaxis treatment (injection)

SecondaryProphylaxisAppointment-September-Booked

Example of a booked patient appointment for RF secondary prophylaxis treatment with the shared care provider

SecondaryProphylaxisAugustEncounterBundle

Example of a Bundled POST which creates instances of Encounter, MedicationStatement and QuestionnaireResponse in one operation

SecondaryProphylaxisCareTeam

Example of secondary prophylaxis care team membership

SecondaryProphylaxisEncounter

Example where RF secondary prophylaxis delivered at a Whangarei medical centre

SevereRfCondition

An example of a rheumatic fever condition as initially diagnosed at registration

SevereRfConditionWithDiagnosisEvidence

An example of a severe rheumatic fever Condition with linked evidence as 3 profiled Observation instances.

TeTaiTokerauRFSecondaryPreventionService

Identifies the Te Tai Tokerau rheumatic fever secondary prevention provider organization

VirtualEncounter

Example of a rheumatic fever patient encounter at a virtual location

WaikatoRFSecondaryPreventionService

Identifies the Waikato rheumatic fever secondary prevention provider organization