ValueSet - Program participation status

[dtr-agency]

To support key strategic objectives in Australia in support of digital health and interoperable data standards developed in collaboration with our partners we will propose 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.

Program participation status values Request for Terminology to investigate and develop if possible an appropriate set of concepts to indicate program participation status. The requirements from Dept of Health are expected to be only a subset of these concepts – and are scoped towards their reporting requirements.

The semantic meaning of the program participation values will be achieved by understanding what the participation status value means in the context of a particular program e.g. may understand that an individual is ‘actively screening’ if the program is a screening program and the status is a value of active involvement.

Dept of Health preliminary requirements for participation status that are of interest to the cervical and bowel national cancer screening programs: Never Responder | Overdue for Screening | New to Screening | Actively Screening | Not Eligible | Excluded | Age Exited

Originally posted by @dtr-agency in https://github.com/AuDigitalHealth/ci-fhir-r4/issues/134#issuecomment-1057441604

[dtr-agency]

Brett picked up looking at program status. Created space in HL7 AU to create notes here: https://confluence.hl7australia.com/display/PA/Program+Status.

Created initial wide set based on act status with elaborated child coding.

[dtr-agency]

Workshop on Program status 18 February - outcomes of the meeting:

• Either HL7 AU or SNOMED CT are ok as Terminology
• Status needs to be as simple but meaningful as possible
• Wide, complex list needs analysis and normalisation
• Revised list for discussion the following week, and response from Terminology as to if SNOMED CT is a pathway forwards

[dtr-agency]

Advice from Terminology states the request for this content can be addressed by concept development in SNOMED CT AU.

[dtr-agency]

Normalisation design feeds in requirements to mandate support of program status for 'opt out' and status for 'suspended'.

[dtr-agency]

Design workshop to define program participation status requirements to feed into Terminology request held 01/03/2022. Design notes and outcomes documented https://confluence.hl7australia.com/display/PA/Program+Status.

In summary concepts proposed are: active | suspended (deferred) | new (not yet active) | ineligible | completed | excluded | opted out | inactive | stopped

Not all participation status are applicable to all programs. A program's defined pathway or protocol will govern the applicability and in-situ meaning of participation status.

[dtr-agency]

Post normalised design review 04/03/2022 considered requirements documented in https://confluence.hl7australia.com/display/PA/Program+Status. Terminology team was walked through the set of concepts and changes made as needed to clarify or improve.

Proposal approved the proposed program participation status design to progress to draft build and submission of PR to AU FHIR Base for adoption into Australian Base Implementation Guide (AU Base 2) subject to WG Approval and entry into HL7 AU Governance.

Request submitted for value set and concept development to Terminology, managed via FHIR Terminology Requests FTR-1508.

[dtr-agency]

For information purposes, an excerpt of the request submitted to ADHA Terminology is below.

Please create a value set that includes SNOMED CT AU concepts that may be used to provide a status indication for participation in a health program.

This request is to support the exchange of health program participation information in Australia as part of the the current work plan initiative: NCSR integration with MHR system.

See the HL7 AU Patient Administration WG page for notes https://confluence.hl7australia.com/display/PA/Program+Status.

Suggested Title: Health Program Participation Status Suggested URI: https://healthterminologies.gov.au/fhir/ValueSet/health-program-participation-status-1 Suggested Description: The Health Program Participation Status value set includes values that may be used to indicate status with respect to an individual's participation in a health program. A program's defined pathway or protocol will govern the applicability and in-situ meaning of participation status. Not all participation status are applicable to all programs. Participation status may provide information on participation exception states including exclusion or ineligibility, or may provide an indication of workflow, or through a health program. Compose requirements: The following concepts (excerpted from) https://confluence.hl7australia.com/display/PA/Program+Status

The wording of concept name is for information purposes only - they do not form part of the request to have those words as a preferred name or synonym.

The hierarchy is also for information purposes - if retained, that's nice, if not and it is a flat list that is also fine.

Level | Concept | Description -- | -- | -- 0 | ineligible | The individual is not eligible to participate according to defined criteria defined by the program.This status is independent of when information that the individual is not eligible is known, while this information is typically determined prior to enrolling an individual in a program it may be discovered at a later point that the individual is ineligible. 0 | new (not yet active) | The individual is known to the program but participation is in the preparatory stages and participation may not yet have begun, e.g. the individual may be referred or enrolled but has not yet participated in a program activity and may not have responded yet to the invitation. 0 | suspended (deferred) | The individual's participation is temporarily suspended and no further participation in the program should occur until suspension has ended.In some circumstances an individual may elect to defer due to travel or illness, or a program may have temporarily suspended an individual's participation pending outcome of some other activity. 0 | active | The individual is actively participating in the program. 1 | overdue | The individual is considered to be actively participating in the program but is overdue for the next program activity to be completed. 0 | inactive | The individual is not actively participating in the program and no other information is known. 1 | stopped | The individual's participation has been permanently halted before completion of the program.The individual or a provider may have withdrawn the individual from the program. 2 | excluded | The individual is excluded from further participation in the program.This may be due to exclusion criteria defined by the program, for example in a disease screening program, upon diagnosis an individual would typically be excluded from further participation in that program. 2 | opted out | The individual has opted out of participating in the program. 1 | completed | The individual has completed the program, i.e. participation in the program is finished to an expected end.In population-based health screening this may be due to exiting once the end period of age eligibility is reached i.e. age exiting.

For context this value set will replace the placeholder binding in Observation.component.value in National Cancer Screening Program Participation Observation and Health Program Participation Observation (for transition to HL7 AU).

[dtr-agency]

Agency Terminology have advised the initial set of SNOMED CT-AU concepts that will be published to support this request are: 1601961000168105 |Not eligible for participation| 1601971000168104 |New participation| 1601981000168101 |Participation temporarily suspended| 1601991000168103 |Participation permanently suspended| 1602001000168101 |Active participation| 1602011000168103 |Participation overdue| 1602021000168105 |Inactive participation| 1602031000168108 |Excluded from participation| 1602041000168104 |Opted out of participation| 1602051000168102 |Participation complete|

Publication planned for the April 2022 release.

[dtr-agency]

ValueSet reviewed and approved for publication. Publication scheduled for April 2022 release.

NOTE: Infrastructure issue blocking publication of new value sets is currently in investigation.

[dtr-agency]

Published in the National Clinical Terminology Service. Accessible via canonical url https://healthterminologies.gov.au/fhir/ValueSet/health-program-participation-status-1