Develop a payload definition to support sharing of program participation information from NCSR to MHR

[dtr-agency]

Prerequisites

• [X] I have searched open and closed issues to make sure it isn't already requested or reported
• [X] I have written a descriptive issue title

The feature

Design and develop a set of materials that define the payload for sharing of program participation information from the National Cancer Screening Register (NCSR) for the electronic exchange of national cancer screening program participation information between patients, healthcare providers, and between healthcare providers and the My Health Record system infrastructure in Australia.

Coverage will be provided for all programs currently supported by the NCSR: the National Bowel Cancer Screening Program (NBCSP) and the National Cervical Screening Program (NCSP).

A national cancer screening program participation record from the NCSR is created by the NCSR in response to a change to participation status that is held by the NCSR.

A national cancer screening program participation record includes, for an individual program, information on the current status of participation of an individual, deferral information, and the next program participation action informatkion.

The participation information held by the NCSR may be changed by an individual, their nominated personal representative, or nominated healthcare provider.

This work will focus on:

1. program participation information
2. the capability to share program participation information from the NCSR with the MHR system
3. the capability to find, select, and retrieve program participation information from the MHR system

The conceptual architecture will define support for:

• national cancer screening program participation record sharing, finding, selecting, retrieving, querying, collating, transforming - instances, lists, messages, documents

The implementation architecture for the first release will support a FHIR R4 payload and retrieval of a generated narrative-only CDA payload that allows for:

• program participation information to be sent from the NCSR to a shared repository, in particular the MHR system, as part of integration - push notification from NCSR
• program participation information to be retrieved and shared from the MHR system by an individual, healthcare provider, or system
• program participation information to be shared using the future Gateway and current B2B Exchange Specifications????
• program participation information to be shared using some well formed messaging framework, document framework, or RESTful API
• extension into implementation of the future additions to the national cancer screening register, i.e. additional national cancer screening programs via features of the conceptual architecture
• extension into implementation of results of national cancer screen program via features of the conceptual architecture????

Potential future work may include support for:

• support for breast cancer screening participation information (BreastScreen Australia)
• support for other disease screening programs
• integration with referrals and specialist letters

What it actually enables people to do

The My Health Record system has been identified as a key integration systems that can promote program uptake through better interaction between Healthcare providers and eligible Healthcare recipients.

The NCSR-MHR integration will encourage conversations about program participation status during a usual healthcare provider and consumer encounters. By providing visibility of program participation status in the National Consumer Portal (NCP), National Provider Portal (NPP), clinical information system (CIS), and hospital system like HIPS we can encourage these conversations, assisting in uptake of the screening programs and improved health outcomes.

How awesome would it be?

Excellent - work program requirement.

Workarounds

N/A

Additional context

There is no current support in MHR for:

• records to be associated with a national cancer screening program or any screening program
• records from the National Cancer Screening Register or any other screening register

The set of records associated with a national cancer screening program include:

• demographic information
• personal information to provide targeted care e.g. CALD, assistance required
• care team information
• history information where relevant e.g. HPV vaccination information
• program participation information
• correspondence
• diagnostic results
• treatment information
• claims information

The NCSR integration project will introduce the capability to share with the MHR:

• program participation information for the National Bowel Cancer Screening Program (NBCSP)
• program participation information for the National Cervical Cancer Screening Program (NCSP)

Architecturally relevant business drivers:

• lowest cost to support existing infrastructure (explore a type and subtyping approach to satisfy the architecture business drivers discussed)
• future extensibility (typing and subtyping, consideration infrastructure terminology, consider setting up core profiles and policies that work plug and play for other national cancer screening program records)

[dtr-agency]

Agency Clinical Record Relationship Model

The following diagram describes the expected relationships to the national cancer screening program participation record in the Agency's Clinical Information Architecture.

No expected future overlap with existing document types - other NCSR information, if supported, would overlap with records including referrals, reports, claims.

Record Categorisation and Concept Hierarchy

The core concept of a national cancer screening program record will be defined as a superclass of the agreement of a common definition for information exchange that can be:

1. used as-is
2. specialised to define support for a specific use case which may themselves be further specialised

The requirements for support at completion of this release are:

1. record of current national bowel cancer screening program participation
2. record of current national cervical cancer screening program participation

Future specialisation may be defined for a particular domain, reporting requirements, historical or some other requirement.

At this time all elements are common to each program.

To support this release, and to underpin all disease screening program participation records the following concept architectures will be defined as per the concept hierarchy above:

• Disease screening program participation record*
  • NCSR specialisation
• View

The Agency Clinical Information Architecture approach of Clinical Information Objects will define additional component Clinical Information Object architectures.

[dtr-agency]

Concepts of interest:

1. Cancer screening program is a health program.
2. Health programs are healthcare services. In this case the national cancer screening programs are healthcare services offered by Services Australia.
3. Information about participation in a health program is an observation with component observations.
4. NCSR is a system device and an operating organisation, that is a part of Services Australia.
5. MHR is a system device and operating organisation, that is a part of Australian Digital Health Agency.

To support key strategic objectives in Australia in support of digital health and interoperable data standards developed in collaboration with our partners this work will produce:

1. A national data model for health program participation information that is realised as HL7 AU FHIR materials published in the HL7 AU Australian Base Implementation Guide (AU Base 2) and governed by the HL7 AU standards process
2. National terminology necessary to share health program participation information in Australia realised in terminology artefacts published on NCTS, and governed by ADHA & HL7 AU processes
3. ADHA FHIR specialised materials deriving and constraining the national data model to support project-specific NCSR to MHR integration requirements
4. ADHA CDA mapping advice published in the ADHA FHIR artefacts to provide direction on supporting this content in a CDA flavour

[dtr-agency]

National data model for health program participation information in development as Health Program Participation Observation. ADHA specialisation for NCSR to MHR in development as ADHA National Cancer Screening Program Participation Observation ADHA view support in development as ADHA National Cancer Screening Program Participation Composition

[dtr-agency]

Information about participation in a health program is a summary observation with component observations.

Solution options proposed in early design workshop 27/01/202: Observation, Procedure, Extension (complex), Encounter-grouped, Composition-grouped, List-grouped. Follow-up design workshop 01/02/22 to walkthrough solution options selected Observation to pursue.

[dtr-agency]

Exchange Scenario: NCSR to MHR to CIS

The scenarios below are only for high-level design activities - they do not represent implementation, validation, persistence or processing decisions. The scenarios do demonstrate the data scenarios documented below and the record categorisation and metadata design documented in Typing, subtyping and categorising national cancer screening program participation records #129.

Scenario 1

NCSR receives cervical result (NCSP Data Scenario 1: Active screening, next action in 1 year) and FOBT for patient (NBCSP Data Scenario 3: Active screening, next due in 2 years) on 22 May 2021. Participation information is updated in the NCSR for both NCSP and NBCSP and sent to MHR system 22 May 2021. Sample instance:

National Cancer Screening Register (NCSR) Program Participation Information (Payload Bundle) for Cleo Moss Esq. (22 MAY 2021).

The MHR system generates and persists: the Payload Bundle, a National Bowel Cancer Screening Program Participation Record DocumentReference and Observation, a National Cervical Cancer Screening Program Participation Record DocumentReference and Observation, and may persist the authoring information (Device & Organization). Sample instances:

DocumentReference for National Bowel Cancer Screening Program Participation Record

DocumentReference for National Cervical Cancer Screening Program Participation Record.

Scenario 2

Patient is now eligible and due (NBCSP Scenario 1: New to Screening). Participation information is updated in the NCSR for NBCSP and sent to MHR system 05 February 2022. Sample instance:

National Cancer Screening Register (NCSR) Program Participation Information (Payload Bundle) for Mr Zhang Wei (05 FEB 2022)

The MHR system generates and persists: the Payload Bundle, a National Bowel Cancer Screening Program Participation Record DocumentReference and Observation, and may persist the authoring information (Device & Organization). Sample instance:

DocumentReference for National Bowel Cancer Screening Program Participation Record

A Clinical Information System views the Patient's program participation information held in the MHR system on 06 February 2022. Sample instance:

National Cancer Screening Program Participation View (Document Bundle) for Mr Zhang Wei (06 FEB 2022)

A Clinical Information System views the patient's NCSR program participation information held in the MHR system on 15 February 2022 - the MHR system has generated a National Cancer Screening Program View on demand (Document Bundle), that contains the retrieved Observations and Organization (NCSR Operator), and includes generated Composition, Patient, Device (MHR), and Organization (MHR Operator) according to business rules. Sample instance

National Cancer Screening Program Participation View (Document Bundle) for Cleo Moss Esq. (15 FEB 2022).

Scenario 3

Continuation of scenario 2.... NCSR recieves information that patient has opted to defer (NBCSP Scenario 2: New to Screening, Deferred) 15 May 2022. Participation information is updated in the NCSR for NBCSP and sent to MHR system 15 May 2022. Sample instance:

National Cancer Screening Register (NCSR) Program Participation Information (Payload Bundle) for Mr Zhang Wei (15 MAY 2022)

The MHR system generates and persists: the Payload Bundle, a National Bowel Cancer Screening Program Participation Record DocumentReference and Observation, and may persist the authoring information (Device & Organization). Sample instance:

DocumentReference for National Bowel Cancer Screening Program Participation Record

A Clinical Information System views the Patient's program participation information held in the MHR system on 16 May 2022. Sample instance:

National Cancer Screening Program Participation View (Document Bundle) for Mr Zhang Wei (16 MAY 2022)

[dtr-agency]

Development and internal design architecture review is complete, clinical Informatics peer review is underway via AN-24 and AN-23.

This is a review activity to close off internal development against the existing requirements and design before putting this work on hold. The NCSR to MHR integration project has been de-prioritised by Dept of Health so this work will go on hold. A complete, correct draft set of materials is intended to be handed over to the project on completion of this review activity.

Temporary branch for review: http://build.fhir.org/ig/AuDigitalHealth/ci-fhir-r4/branches/NCSRIntegrationDraft/

[dtr-agency]

Clinical Informatics peer review and limited testing complete via AN-24 and AN-23:

1. Fix to typo in Composition.section.mode fixed value
2. Improvement to Observation definition
3. Added missing Must Support to Observation.component:participationStatus.code
4. Removed erroneous Must Support from Observation.component:forecastStatus.code.text

Other changes introduced via whole-sale enhancement to StructureDefinitions:

1. Addition of condition attribute to element definitions
2. Addition of XPath expression to invariants

[dtr-agency]

The NCSR to MHR Integration FHIR payload materials have completed development of this material including HL7 AU Base content, SNOMED CT-AU content, clinical Informatics peer review and limited testing, FHIR Architecture review, and Terminology review.

This work is now on hold until progressed as part of a work program.

Product realisation of NCSR concept (as part of integration with MHR) #130 remains open until the infrastructure identifiers for the NCSR (PAI-D, PAI-O, etc.) are registered.