ValueSet - reason for opting off of program participation

[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.

Reason for suspension of program participation / opt off of program participation Request for Terminology to investigate and identify/develop a set of concepts to support the reason for suspension of program participation. Also think a constrained set for disease screening program participation seems relevant.

Available reference material (but specific to disease or cancer screening): https://meteor.aihw.gov.au/content/index.phtml/itemId/568098, https://meteor.aihw.gov.au/content/index.phtml/itemId/568086, https://www.ncsr.gov.au/content/ncsr/en/contact-us.html?category=bowelScreening&enquiryType=reqDeferScreening.

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

[dtr-agency]

Early proposal for value set

Reason for this value set is to support the exchange of health program participation information in Australia, this work would be completed as part of the the current work plan initiative: NCSR integration with MHR system.

Consideration of the values is in the context of a national data model to support health program participation – not scoped strictly to the national cancer screening. In particular what other values are of interest? Consideration for if the reason for deferral needs to include hardship concepts or refusal for ethical or religious beliefs but possibly that determination can be left with the terminology analysis portion of the FTR?

The current Poc FHIR Profile that shows where this set would be bound is here: Health Program Participation Observation (for transition to HL7 AU).

The set of reasons should support cover the reasons an individual will choose to opt out of a program activity or participation in the program as a whole and cover a wide range of treatment and prevention programs, e.g. 12 step alcohol program.

When valued for a disease screening program this concept is equivalent to Australian Institute of Health and Welfare data element 568084 Person—reason for opting off a disease screening program and should cover the reasons in data element 732523 Person—reason for opting off a disease screening program, code N but not include exception values of 'other reason' or 'not stated/inadequately described'.

The set of reasons for opting off bowel screening captured in the NCSR are seen on the form: https://www.ncsr.gov.au/content/dam/ncsr/pdfforms/bowel/Bowel-screening-Opt-Out-form.pdf

The set of reasons for opting off cervical screening captured in the NCSR are seen on the form: https://www.ncsr.gov.au/content/dam/ncsr/pdfforms/cervical/Cervical-screening-Opt-Out-Form-V6.0.pdf

Element	Description
Suggested Title of Value Set	Reason for Suspension of Health Program
Suggested URI	https://healthterminologies.gov.au/fhir/ValueSet/reason-for-suspension-health-program-1
Suggested Description	The Reason for Suspension of Health Program value set includes values that may be used to indicate the reason an individual has suspended participation in a program.
Terminologies included	SNOMED CT
Compose requirements	Made up of the SNOMED CT concepts that support at least the following (the words used are not important to be kept as-is): privacy concerns lack of interest / patient not interested Medical advice not to participate Uncomfortable with the process Having regular screening The cancer screening program specific values of interest are the following: Under cancer care Having regular colonoscopies Having regular FOBT screening Others to consider - but please sanity check: ethical / religious objection (is this a specific type of patient not interested?) hardship reasons

[dtr-agency]

Feedback from Clinical Information Modeller confirms proposed concepts; potentially add in participation in other (overalapping / duplicate) program; recommends concepts covering personal beliefs be added.

[dtr-agency]

Feedback from Terminologist proposed breakdown of medical advice to not participate: High risk patient (co-morbidities where risk outweighs benefit of screen; undergoing regular diagnostics).

Feedback from Terminologist also confirms that hardship concepts should be included that limit access to a program.

Terminologist suggested that reasons for suspension and opting off/out could be covered by the reasons (concepts). Are they (suspension and opt-off/out) required to be differentiated in the model?

Is “prefer not to answer” needed also?

General Comments: these concepts fit into the situation with explicit context hierarchy. Note actual wording will require proper SCTAU due diligence.

[dtr-agency]

Terminologist suggested that reasons for suspension and opting off/out could be covered by the reasons (concepts). Are they (suspension and opt-off/out) required to be differentiated in the model? In reply to suggestion of managing same set with opt off and suspension - there is some overlap of approximately a little over half however there are a significant set of concepts that apply only to an opt-out situation including privacy concerns or personal beliefs, or uncomfortable with process, or already participating in a similar program.

There is potential here for the development of a 'reason for not participating' value set, this would subsume the reason for opting out and reason for suspending value sets including ineligibility and exclusion values.

Is “prefer not to answer” needed also?

It is meaningful in the value domain but not as a value for 'reason for not participating' as it provides a reason to why we don't know the reason.

[dtr-agency]

Post normalisation proposal moves the separate data items for suspension of program participation (flag, period, reason) and opted off of program participation (flag, date, reason) into program participation (status, period, reason).

This feature will now be progressed as a reason for not participating value set, this would subsume the reason for opting out and reason for suspending value sets including ineligibility and exclusion values.