Australian National Child Digital Health Implementation Guide

National Child Digital Health Implementation Guide, published by National Children's Digital Health Collaborative (NCDHC). This is not an authorized publication; it is the continuous build for version null). This version is based on the current content of https://github.com/hl7au/au-fhir-childhealth/ and changes regularly. See the Directory of published versions

This is the Continuous Integration Build of the Australian Child Digital Health Implementation Guide, based on FHIR Version 3.0.2. (will be incorrect/inconsistent at times). See the Directory of published versions

Australian National Child Digital Health Implementation Guide

Introduction

NCDHC(National Children’s Digital Health Collaborative)
NCDHC is a collabarative initative of Australian Digital Health Agency,eHealth NSW and the Sydney Children’s Hospitals Network.The focus of the Collaborative to explore how digital health technology can help make Australia the best practice model for mothers experiencing pregnancy, going through the birthing process and nurturing and raising a child. The initiatives have the aim of improving the health and wellbeing of all Australian children and expectant mothers, irrespective of their location, socioeconomic status or cultural background.Following initatives are in the scope:

Child Digital Health Record (CDHR)
The Child Digital Health Record (CDHR),intends to capture a participating child’s valuable health and development information, currently recorded in hard-copy baby books,through electronic means. This would enable the easy and secure access of the child’s health records by the parents and health-care providers when and where it is needed.

The CDHR proof-of-concept being trialled by the National Children’s Digital Health Collaborative does not require changes to existing processes,or to the type of information captured in local systems.The CDHR receives data for consented children from local clinical information systems and presents it to clinicians through a “Provider Viewer” and to consumers through “consumer applications”.Consumer entered data will also be available through the consumer applications.

Digital Pregnancy Health Record (DPHR)
The Digital Pregnancy Health Record (DPHR),intends to capture a participating expectant mother’s valuable health and development information, currently recorded in hard-copy pregnancy records,through electronic means.A Digital Pregnancy Health Record will capture this information digitally so it is easily accessible by the mother and healthcare providers, making it readily available when and where it is needed.

Digital Pregnancy Health Record
















The CDHR and DPHR proof of concept enables the exchange of information through a series of health interactions in real time within a defined privacy and consent framework. It utilises child and expectant mother’s Health Interaction data from existing National, Jurisdictional and Non-Jurisdictional systems clinical systems and includes the capture of consumer Health Interaction data by parents and families through the use of consumer apps.The Health Interaction model is predicated on interoperability between systems collecting child and pregnant mother health information.It is intended that these systems will be able to publish elements of that information as Health Interactions to share with the Child Digital Health record and Digital Pregnancy Health Record,as well as being able to subscribe and display interactions originating from other systems.

Health Interaction(HI) is a term used by the NCDHC to describe a point in time when health related information is exchanged. A Health Interaction could be:

 - a Clinical Health Interaction with a health-care provider e.g. a child’s health assessment with a GP or community nurse,a mothers initial examination , scheduled antenatal appointment or pathology result 

 - a Consumer Health Interaction allows the consumer to input or view information through the consumer application e.g. height information. The consumer who has access to this information is the authorised representative of the child (e.g. parent/guardian) or a nominated representative granted access to the record by the authorised representative (e.g. grandparent). 

 - a Technical Health Interaction e.g. a notification sent to a consumer e.g. a notification advising of a missed immunisation,a notification sent to a mother advising of a missed appointment

 - an Administrative Health Interaction e.g. a consumer consenting to participate in the Child Health Record Program,a mother consenting to participate in the Digital Pregnancy Health Record program

This guide covers the capability requirements of FHIR services to implement various profiles and support interfaces in an Australian context for the purpose of implementation of the CDHR and DPHR. This document is a working specification that is expected to be implemented and tested by FHIR®© system producers to enable feedback to improve the content of this guide.

Scope

CDHR And DPHR Scope :

CDHR Release 1.0.0 scope is limited to following health interactions:

Consent to Participate
This is an Administrative Health Interaction.It creates a consent record that indicates the consumers agreement to participate in the Child Digital Health Record initiative.

Consumer Audit View
This is an Administrative Health Interaction.It lets a consumer view an audit trail of consumers(representatives), providers and organisations who have accessed their child health record, including the data sets viewed.

Child and Representative Registration
This an Administrative Health Interaction.It creates a registration record for the child or representative in the CDHR system.

Health Check Assessment
This is a Clinical Health Interaction.It captures information related to health checks, screening or other health assessments which are conducted across Australia based on each jurisdictions’ defined health check schedule.

Newborn Delivery
This is a Clinical Health Interaction.It records all the identifying and clinical health information of a newbirth in the system. This interaction forms the basis of the child’s longitudinal health record.

Withdrawal of Consent to Participate
This is an Administrative Health Interaction.It records a consumer’s consent withdrawal to be part of the longitudinal child health record program.

View Longitudinal Record
This is an Administrative Health Interaction.It lets a clinician or consumer view a child’s longitudinal health record in context of the child’s clinical record or via the consumer app.

Consent Check
This an Administrative Health Interaction.Prior to the creation of the Longitudinal Health record and during an attempt to access or view the Longitudinal Health record, a consent check to ensure the consent is current and active.

DPHR Release 1.0.0 scope is limited to following health interactions:

Antenatal Visit
This is a Clinical Health Interaction.It captures information related to a pregnant mother’s antenatal visit.Following details about the pregnant mother are captured:

  • Estimated date of birth: Estimation of date of delivery based on clinical, physical and technical observations
  • Maternal health check: observations of the health of the mother and discussions on various health and lifestyle aspects to support the pregnancy
  • Fetal health checks: encompassing fetal observations i.e. heart rate, movements and arrangement (presentation and lie) within the womb
  • Progress notes: a record of the progress and observations of the mother and fetus, including details of any interventions, health issues or other comments affecting the pregnancy

Consent to Participate
This is an Administrative Health Interaction.It creates a consent record that indicates the consumers agreement to participate in the Digital Pregnancy Health Record initiative.

Consumer Audit View
This is an Administrative Health Interaction.It lets a consumer view an audit trail of consumers(representatives), providers and organisations who have accessed their pregnancy health record, including the data sets viewed.

Withdrawal of Consent to Participate
This is an Administrative Health Interaction.It records a consumer’s consent withdrawal to be part of the longitudinal digital pregnancy health record program.

View Longitudinal Record
This is an Administrative Health Interaction.It lets a clinician or consumer view a pregnant mother’s longitudinal health record in context of the digital pregnancy health record or via the consumer app.

Consent Check
This an Administrative Health Interaction.Prior to the creation of the Longitudinal Health record and during an attempt to access or view the Longitudinal Health record,a consent check to ensure the consent is current and active.

For detailed description and complete list of profiles with relevant samples,refer NCDHC Profiles

More details on the Australian Child Health Working Group are available here: Child Health Working Group

Usage

This document is a working specification that may be directly implemented by FHIR®© system producers.

Information contained in this document is aimed at providing guidance on representing Australian local concepts using FHIR. This includes code systems, extensions and profiles on base FHIR types. The content of the IG is general in nature and seeks to provide a ‘how-to’ guide when representing concepts, it includes core base profiles that can be further constrained for a particular usage.

Collaboration

This guide is the product of collaborative work undertaken with participants from:

  • HL7 Australia Orders and Observations Working Group
  • HL7 Australia Medications Working Group
  • HL7 Australia Patient Administration Working Group
  • Australian Digital Health Agency
  • Australian FHIR Implementers’ Community
  • HL7 Australia Members