Typing, subtyping and categorising national cancer screening program participation records

[dtr-agency]

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:

1. program participation information for the National Bowel Cancer Screening Program (NBCSP)
2. program participation information for the National Cervical Cancer Screening Program (NCSP)

In support of development 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. Integration with the MHR system and cross-enterprise sharing from the MHR system requires record categorisation.

Rough conceptualisation of possible concept hierarhcy of record of interest.

Originally posted by @dtr-agency in https://github.com/AuDigitalHealth/ci-fhir-r4/issues/126#issuecomment-1039651407

[dtr-agency]

ClassCode

Record types are defined based on the primary purpose of the record, from the concept hierarchy and context above - in the context of the existing choices around classCode and typeCode, the options for classCode in order of general to specific is:

1. program participation record: can support records of participation from all programs including an alcohol reduction program
2. screening program participation record: can support records of participation from all screening programs including newborn bloodspot screening program, abdominal aortic aneurysm (AAA) screening programme
3. disease screening program participation record: can support records of participation from all disease screening programs including cardiovascular disease screening program
4. cancer screening program participation record: can only support records of participation in cancer screening programs without constraint on the jurisdictional level administrating the program
5. national cancer screening program participation record: can only support records of participation from a national cancer screening program including AU or NZ or UK etc.

The meaningful options for consideration are 1-4 for interoperability, option 5 is presented for completeness in case of atypical endpoint implementation constraints that must be serviced, it is a not generally suitable for a class code.

Outcome from meeting 03 Feb 2022 with Solution Architect, Clinical Information Architect, Business Analyst, Product Manager, CDA Implementation Modeller: to proceed with _Disease Screening Program Participation Record_. Represented in Figure 1. Alternative A national cancer screening register program participation record categorisation for discussion.

[dtr-agency]

TypeCode

In the context of the use cases for this project an allowed sub type (i.e. typecodes) is proposed to be defined as the following concept:

1. a specific identified program participation record type e.g. national bowel cancer screening program participation record
2. a kind of program participation record scoped by an isa relationship to the class code (e.g. if class code is screening program participation record then the sub type may be 'national cancer screening program participation record')

For the purposes of the NCSR integration project it is proposed that:

1. All three national cancer screening programs will have a program participation record sub type concept developed
2. Only the sub types for the two national cancer screening programs in scope of this project are to be supported - e.g. included in the TSS, and other conformance artefacts as directed by the Solution Architect

Proposal is ratified. Outcome from meeting 03 Feb 2022 with Solution Architect, Clinical Information Architect, Business Analyst, Product Manager, CDA Implementation Modeller to proceed with the sub types as:

1. subtype for the view document as National Cancer Screening Program Participation View
2. subtype for the record of participation in NBCSP to be National Bowel Cancer Screening Program Participation Record 
3. subtype for record of participation in NCSP to be National Cervical Cancer Screening Program Participation Record 

The above outcomes are represented in Figure 1. Alternative A national cancer screening register program participation record categorisation for discussion.

[dtr-agency]

Concept Development

Terminology	NCTIS Data Components
Reason	New concept
Concept arc	Data Components (101) > Structured Documents (100) OID Sub-Register
Suggested Name of Concept	Disease Screening Program Participation Record
Detailed Description	A record of an individual's participation in one or more disease screening programs such as a national cancer screening program or population screening for abdominal aortic aneurysm. Participation information may include information on an individual's eligibility for a program, suspension of participation in a program, or status of participation in a program.
Business Reason for Request	To support the current work plan initiative: NCSR integration with MHR system. See National cancer screening program participation record categorisation and concept hierarchy

Terminology	NCTIS Data Components
Reason	New concept
Concept arc	Data Components (101) > Structured Documents (100) OID Sub-Register
Suggested Name of Concept	National Cancer Screening Program Participation View
Detailed Description	A view of an individual's participation in national cancer screening programs. Participation information may include information on an individual's eligibility for a program, suspension of participation in a program, or status of participation in a program.
Business Reason for Request	To support the current work plan initiative: NCSR integration with MHR system. See National cancer screening program participation record categorisation and concept hierarchy

Terminology	NCTIS Data Components
Reason	New concept
Concept arc	Data Components (101) > Structured Documents (100) OID Sub-Register
Suggested Name of Concept	National Bowel Cancer Screening Program Participation Record
Detailed Description	A record of an individual's participation in a national bowel cancer screening program. Participation information may include information on an individual's eligibility for a program, suspension of participation in a program, or status of participation in a program.
Business Reason for Request	To support the current work plan initiative: NCSR integration with MHR system. See National cancer screening program participation record categorisation and concept hierarchy

Terminology	NCTIS Data Components
Reason	New concept
Concept arc	Data Components (101) > Structured Documents (100) OID Sub-Register
Suggested Name of Concept	National Cervical Cancer Screening Program Participation Record
Detailed Description	A record of an individual's participation in a national cervical cancer screening program. Participation information may include information on an individual's eligibility for a program, suspension of participation in a program, or status of participation in a program.
Business Reason for Request	To support the current work plan initiative: NCSR integration with MHR system. See National cancer screening program participation record categorisation and concept hierarchy

Terminology	NCTIS Data Components
Reason	New concept
Concept arc	Data Components (101) > Structured Documents (100) OID Sub-Register
Suggested Name of Concept	National Breast Cancer Screening Program Participation Record
Detailed Description	A record of an individual's participation in a national breast cancer screening program. Participation information may include information on an individual's eligibility for a program, suspension of participation in a program, or status of participation in a program.
Business Reason for Request	To support the current work plan initiative: NCSR integration with MHR system. See National cancer screening program participation record categorisation and concept hierarchy

Concepts proposed for addition to NCTIS Data Components https://healthterminologies.gov.au/fhir/CodeSystem/nctis-data-components-1

code	display & definition
100.32039	Disease Screening Program Participation Record
100.32040	National Cancer Screening Program Participation View
100.32041	National Bowel Cancer Screening Program Participation Record
100.32042	National Cervical Cancer Screening Program Participation Record
100.32043	National Breast Cancer Screening Program Participation Record

Concepts reviewed and approved by Terminology Analyst, Lead Clinical Information Modeller, CDA Implementation Modeller. Feedback opportunity provided to Product Owner, Business Analyst, Solution Architect - no feedback provided.Documentation available on internal ADHA JIRA CI - NCTIS Data Components DATA-281.

Publication in NCTIS Data Components https://healthterminologies.gov.au/fhir/CodeSystem/nctis-data-components-1 scheduled for March 2022 release at v1.12.0. Publication managed by internal ADHA JIR FHIR Terminology Requests FTR-1478

[dtr-agency]

Early design model for categorising: Clinical Information Object & Registry Object - specific to NCSR to MHR

FHIR Observation Record Metadata	Observation
Logical Identifier	identifier
Version specific identifier	Bundle.Identifier*(not to be used due to subtype where a Bundle can contain more than one record) Observation.identifier
subject	subject
author	performer
time	Bundle.timestamp (Observation.meta.lastUpdated)
Type	category
Subtype	code

FHIR Composition Record Metadata	Composition (theoretical only upload not to include this)
Logical Identifier	identifier
Version specific identifier	Bundle.Identifier*(not to be used due to subtype where a Bundle can contain more than one record) Composition.identifier
subject	subject
author	author(Device) + author(Organization)
time	Bundle.timestamp (Composition.meta.lastUpdated)
Type	category
Subtype	code

FHIR DocumentReference Record Metadata	Composition (theoretical only upload not to include this)
Logical Identifier	identifier*due to subtype where business rules prevent versioning
Version specific identifier	masterIdentifier
subject	subject
author	author(Device) + author(Organization)
time	date
Type	category
Subtype	code

CDA Record Metadata	ClinicalDocument (theoretical only upload not to include this)
Logical Identifier	id*due to subtype where business rules prevent versioning
Version specific identifier	id
subject	recordTarget
author	author(Device) + author(Organization)
time	effectiveTime
Type	n/a
Subtype	code

XDS Record Metadata	XDSDocumentEntry
Logical Identifier	entryUUID
Version specific identifier	uniqueId
subject	patientId + sourcePatientId/sourcePatientInfo
author	author(Device) + authoringOrganization
time	creationTime
Type	classCode
Subtype	typeCode

The identifiers and typing above supports the record architecture of a single logical record of interest - that single logical record may be presented as an Observation and may be presented in a Document flavour (using Composition or ClinicalDocument). In this approach the logical identifier of the document is held in Observation.identifier, and when instantiated in a document form in Composition.identifier or ClinicalDocument.identifier. In practice, to work with the limitations of using Bundle.identifier to upload multiple logical record, the logical identifier of each FHIR resource representing the logical record , i.e. Observation (Clinical Information Object) or Composition (Document Object) can be used.

[dtr-agency]

Early design model for categorising: View - specific to MHR to CIS

FHIR Composition Record Metadata	Composition (theoretical only upload not to include this)
Logical Identifier	Bundle.identifier & Composition.identifier
Version specific identifier	Bundle.identifier & Composition.identifier
subject	subject
author	author
time	Bundle.timestamp & (Composition.meta.lastUpdated)
Type	category
Subtype	code

FHIR DocumentReference Record Metadata	Composition (theoretical only upload not to include this)
Logical Identifier	identifier*due to subtype where business rules prevent versioning
Version specific identifier	masterIdentifier
subject	subject
author	author
time	date
Type	category
Subtype	code

CDA Record Metadata	ClinicalDocument (theoretical only upload not to include this)
Logical Identifier	id*due to subtype where business rules prevent versioning
Version specific identifier	uniqueId
subject	recordTarget
author	author
time	effectiveTime
Type	n/a
Subtype	code

XDS Record Metadata	XDSDocumentEntry
Logical Identifier	entryUUID
Version specific identifier
subject	patientId + sourcePatientId/sourcePatientInfo
author	author(Device) + authoringOrganization
time	creationTime
Type	classCode
Subtype	typeCode

[dtr-agency]

Draft composition with bindings implements the designs for typing and categorisation: ADHA National Cancer Screening Program Participation Composition