HL7AU - FHIR WG : Program Status

Investigating health program participation status values. The values represents the current state of an individual's participation in a program. This status is only representative at the time this observation is asserted and may also represent participation exception states including exclusion or ineligibility.

Proposed concepts

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.

Lvl	Concept	Definition
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 The individual or a provider may have withdrawn the individual from the program.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.

Table below demonstrates and example mapping between National Bowel Cancer Screening Program (NBCSP) and above proposed values

NBCSP Participation Status	Health Program Participation Status
Never Responder	inactive
Overdue for Screening	overdue
New to Screening	new (not yet active)
Actively Screening	active
Not Eligible	ineligible
Excluded	excluded
Age Exited	completed

Working Notes from design workshop 01/02/2022

active - actively participating

overdue - not current in participation

defering - put off participation till later

excluded - excluded / exited; medical exclusion; contraindication; diagnosis

ineligible - prior to starting or discovered later in participation; pre-defined criteria

opt-out - subject does will not participate

completed - program is f

not yet active - new / referred / not yet active / invite

inactive - not participating; never responded

never responded is a meaningful status for public health population screening and for court mandated

actively participating, excluded / exited, ineligible, completed, not participating, new / referred / not yet active

new / referred / enrolled / not yet active: the program has been triggered but participation hasn't begun

on the new - essentially some response activity needs to occur, i.e. in national cancer screening the new could be 'invited' and it's waiting on a response or end of time limit to move to the next status

ineligible - the patitent cannot be enrolled - cannot move to new

eligibility is not tied to workflow status this may be known in advance or it may be discovered later

deferring vs opting out vs medical exclusion

skipped over cancelled and aborted - my making first class citizens of those items

Concepts for national cancer screening (NCS)

Dept of Health advised participation status concepts for national cancer screening programs are below; will be used to test completeness and appropriateness of proposed concepts.

'Never Responder' is a status indicating that the individual is eligible (new), has been sent an invitation to participate (new), no response has been received and a program-defined time period set for 'new' has passed (inactive), participation status is set to 'never responder' (inactive).

Overdue for Screening is a state where the individual is eligible, is active,

New to Screening - is a state where the individual is eligible (new), has been sent an invit
Actively Screening - active
Not Eligible - cancelled / noteligible (assume this means never started due to eligibility?)
Excluded - aborted / providerwithdrawn
Age Exited - completed / ageexited (this is likely a natural completion of an active program only - status never responder is expected to stay even if age criteria is met?)

Mapping activity: Dep of Health NCS values to proposed list

never responded = inactive

Never responded is a meaningful status for public health population screening and for court mandated. If for those two types of programs there is not another meaningful status of inactive it can just be mapped to that if we need to decompose to a specific set of concepts then we will add those as the requirements become known.

overdue = active but we need a concept as a subset of active to indicate overdue

new to screening = not yet active (new)

actively screening = active

not eligible = ineligible

excluded = exclusion

I propose we consider that there are medical exclusions and two flavours - one is contraindication and the other is a diagnosis e.g. screening program diagnoses the condition. After discussion we determined to leave at exclusion for now. This is sufficient - there are many finer grained reasons for exclusion but no current benefit to exploding out the list with those finer grained concepts. These can be added as needed.

age exited = completed

After mapping with Dept of Health activity the set of values is now the following:

Act status

Table below shows a detailed view of possible concepts using the Act Status code system as the framework. `http://terminology.hl7.org/CodeSystem/v3-ActStatus` + new child codes

Level	Code	Display	Definition
1	normal	normal	Encompasses the expected states of an Act, but excludes "nullified" and "obsolete" which represent unusual terminal states for the life-cycle.
2	aborted	aborted	The Act has been terminated prior to the originally intended completion.
3	~~providerwithdrawn~~	~~providerwithdrawn~~	~~The Act terminated by the provider due to some criteria. (added terminated by and reason for status axes)~~
3	~~subjectwithdrawn~~	~~subjectwithdrawn~~	~~The Act terminated by the subject. (added terminated by and reason for status axes)~~
2	active	active	The Act can be performed or is being performed.
3	overdue	overdue	The Act can be performed but has not been performed when it was expected to do so. (added relative time axis)
3	started	started	The Act has been able to be performed or is being performed starting recently. (added relative time axis)
2	cancelled	cancelled	The Act has been abandoned before activation.
3	noteligible	not eligible	The Act was abandoned as activation required criteria no met. (added reason for status axes)
3	optout	optout	The Act was abandoned by the subject opting not to participate. (added reason for status axes)
2	completed	completed	An Act that has terminated normally after all of its constituents have been performed.
3	ageexited	age exited	An Act that has ended normally based on subject age criteria. (added reason for status axis)
2	held	held	An Act that is still in the preparatory stages has been put aside. No action can occur until the Act is released.
2	new	new	An Act that is in the preparatory stages and may not yet be acted upon.
3	subjectneedaction	subject need action	An Act that is prepared but subject has not, as yet, actively participated. (added specifc party status)
2	suspended	suspended	An Act that has been activated (actions could or have been performed against it), but has been temporarily disabled. No further action should be taken against it until it is released
3	subjectpaused	subject paused	An Act that has been paused by request of the patient (added specific party reason for status)
1	nullified	nullified	This Act instance was created in error and has been 'removed' and is treated as though it never existed. A record is retained for audit purposes only.
1	obsolete	obsolete	This Act instance has been replaced by a new instance.