Name Flags Card. Type Description & Constraints Consent 0..* Consent Record of organ and tissue donation decision held by the Australian Organ Donor Register Slices for extension 0..* Extension Extension Slice: Unordered, Open by value:url dateInitialRegistration S 0..1 dateTime Date the individual first registered URL: http://ns.electronichealth.net.au/fhir/StructureDefinition/dh-date-initial-registration-1 identifier S 1..* Identifier Identifier for this record (external references) status S 1..1 code draft | proposed | active | rejected | inactive | entered-in-error Fixed Value: active scope S 1..1 CodeableConcept Which of the four areas this resource covers (extensible) Required Pattern: At least the following coding 1..* Coding Code defined by a terminology system Fixed Value: (complex) system 1..1 uri Identity of the terminology system Fixed Value: http://terminology.hl7.org/CodeSystem/consentscope code 1..1 code Symbol in syntax defined by the system Fixed Value: adr Slices for category S 1..* CodeableConcept Classification of the consent statement - for indexing/retrieval Slice: Unordered, Open by pattern:$this category:health 1..1 CodeableConcept Consent for healthcare service, procedure, or activity Required Pattern: At least the following coding 1..* Coding Code defined by a terminology system Fixed Value: (complex) system 1..1 uri Identity of the terminology system Fixed Value: http://loinc.org code 1..1 code Symbol in syntax defined by the system Fixed Value: 59284-0 category:aodr 1..1 CodeableConcept Organ donation consent Required Pattern: At least the following coding 1..* Coding Code defined by a terminology system Fixed Value: (complex) system 1..1 uri Identity of the terminology system Fixed Value: http://loinc.org code 1..1 code Symbol in syntax defined by the system Fixed Value: 64300-7 patient SC 1..1 Reference(ADHA Core Patient) Who the consent applies to inv-dh-cons-aodr-01: At least reference or a valid identifier shall be present dateTime SC 1..1 dateTime When this Consent was created or indexed inv-dh-cons-aodr-03: Date shall be at least to day performer SC 1..1 Reference(ADHA Core Patient) Grantor of consent inv-dh-cons-aodr-04: At least reference or a valid identifier shall be present organization SC 1..1 Reference(ADHA Core Organization) Custodian of the consent inv-dh-cons-aodr-05: At least reference or display or a valid identifier shall be present policy S 1..1 BackboneElement Australian Organ Donor Register authority S 0..1 uri Enforcement source for policy Fixed Value: http://australianorgandonorregister.gov.au uri S 1..1 uri Specific policy covered by this consent Fixed Value: http://www.australianorgandonorregister.gov.au/aodr provision SC 1..1 BackboneElement Individual's decision about donation inv-dh-cons-aodr-02: Specific provisions shall be specified if the individual is willing to donate, otherwise prohibited type S 1..1 code deny | permit action S 1..1 CodeableConcept Removal of organ or tissue for donation Required Pattern: At least the following coding 1..* Coding Code defined by a terminology system Fixed Value: (complex) system 1..1 uri Identity of the terminology system Fixed Value: http://snomed.info/sct code 1..1 code Symbol in syntax defined by the system Fixed Value: 53958007 provision S 0..* BackboneElement Individual's decision about donation of specific organ or tissue type S 1..1 code deny | permit action S 1..1 CodeableConcept Removal of organ or tissue for donation Required Pattern: At least the following coding 1..* Coding Code defined by a terminology system Fixed Value: (complex) system 1..1 uri Identity of the terminology system Fixed Value: http://snomed.info/sct code 1..1 code Symbol in syntax defined by the system Fixed Value: 53958007 data S 1..1 BackboneElement The organ or tissue that is the target of the donation decision meaning 1..1 code instance | related | dependents | authoredby Fixed Value: instance reference S 1..1 Reference(ADHA Organ or Tissue for Donation BodyStructure) The actual data reference reference 1..1 string Literal reference, Relative, internal or absolute URL Documentation for this format
ADHA Record of Consent from Australian Organ Donor Register
The purpose of this profile is to define a representation of a record of organ and tissue donation decision held by the Australian Organ Donor Register for the electronic exchange of digital health information between individuals, healthcare providers, and the My Health Record system infrastructure in Australia.
Copyright © 2022 Australian Digital Health Agency - All rights reserved. This content is licensed under a Creative Commons Attribution 4.0 International License. See https://creativecommons.org/licenses/by/4.0/. This resource includes SNOMED Clinical Terms™ (SNOMED CT®) which is used by permission of the International Health Terminology Standards Development Organisation (IHTSDO). All rights reserved. SNOMED CT®, was originally created by The College of American Pathologists. “SNOMED” and “SNOMED CT” are registered trademarks of the IHTSDO. The rights to use and implement or implementation of SNOMED CT content are limited to the extent it is necessary to allow for the end use of this material. No further rights are granted in respect of the International Release and no further use of any SNOMED CT content by any other party is permitted. This material contains content from LOINC (http://loinc.org). LOINC is copyright © 1995-2021, Regenstrief Institute, Inc. and the Logical Observation Identifiers Names and Codes (LOINC) Committee and is available at no cost under the license at http://loinc.org/license. LOINC® is a registered United States trademark of Regenstrief Institute, Inc. All copies of this resource must include this copyright statement and all information contained in this statement.
Record of organ and tissue donation decision held by the Australian Organ Donor Register
Describes the organ and tissue donation decisions made by an individual as held on the Australian Organ Donor Register
Broadly, there are 3 key areas of consent for patients: Consent around sharing information (aka Privacy Consent Directive - Authorization to Collect, Use, or Disclose information), consent for specific treatment, or kinds of treatment, and general advance care directives.
If the resource is contained in another resource, it SHALL NOT contain nested Resources
not(parent::f:contained and f:contained)
If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
contained.where((('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
not(exists(for $id in f:contained/*/f:id/@value return $contained[not(parent::*/descendant::f:reference/@value=concat('#', $contained/*/id/@value) or descendant::f:reference[@value='#'])]))
If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
not(exists(f:contained/*/f:meta/f:versionId)) and not(exists(f:contained/*/f:meta/f:lastUpdated))
If a resource is contained in another resource, it SHALL NOT have a security label
When a resource has no narrative, only systems that fully understand the data can display the resource to a human safely. Including a human readable representation in the resource makes for a much more robust eco-system and cheaper handling of resources by intermediary systems. Some ecosystems restrict distribution of resources to only those systems that do fully understand the resources, and as a consequence implementers may believe that the narrative is superfluous. However experience shows that such eco-systems often open up to new participants over time.
A resource should have narrative for robust management
exists(f:policy) or exists(f:policyRule)
IF Scope=privacy, there must be a patient
patient.exists() or scope.coding.where(system='something' and code='patient-privacy').exists().not()
exists(f:patient) or not(exists(f:scope/f:coding[f:system/@value='something' and f:code/@value='patient-privacy'])))
IF Scope=research, there must be a patient
patient.exists() or scope.coding.where(system='something' and code='research').exists().not()
exists(f:patient) or not(exists(f:scope/f:coding[f:system/@value='something' and f:code/@value='research'])))
patient.exists() or scope.coding.where(system='something' and code='adr').exists().not()
exists(f:patient) or not(exists(f:scope/f:coding[f:system/@value='something' and f:code/@value='adr'])))
IF Scope=treatment, there must be a patient
patient.exists() or scope.coding.where(system='something' and code='treatment').exists().not()
exists(f:patient) or not(exists(f:scope/f:coding[f:system/@value='something' and f:code/@value='treatment'])))
The logical id of the resource, as used in the URL for the resource. Once assigned, this value never changes.
The only time that a resource does not have an id is when it is being submitted to the server using a create operation.
The metadata about the resource. This is content that is maintained by the infrastructure. Changes to the content might not always be associated with version changes to the resource.
All FHIR elements must have a @value or children
hasValue() or (children().count() > id.count())
A set of rules under which this content was created
A reference to a set of rules that were followed when the resource was constructed, and which must be understood when processing the content. Often, this is a reference to an implementation guide that defines the special rules along with other profiles etc.
Asserting this rule set restricts the content to be only understood by a limited set of trading partners. This inherently limits the usefulness of the data in the long term. However, the existing health eco-system is highly fractured, and not yet ready to define, collect, and exchange data in a generally computable sense. Wherever possible, implementers and/or specification writers should avoid using this element. Often, when used, the URL is a reference to an implementation guide that defines these special rules as part of it's narrative along with other profiles, value sets, etc.
This element is labeled as a modifier because the implicit rules may provide additional knowledge about the resource that modifies it's meaning or interpretation
The base language in which the resource is written.
Language is provided to support indexing and accessibility (typically, services such as text to speech use the language tag). The html language tag in the narrative applies to the narrative. The language tag on the resource may be used to specify the language of other presentations generated from the data in the resource. Not all the content has to be in the base language. The Resource.language should not be assumed to apply to the narrative automatically. If a language is specified, it should it also be specified on the div element in the html (see rules in HTML5 for information about the relationship between xml:lang and the html lang attribute).
Text summary of the resource, for human interpretation
A human-readable narrative that contains a summary of the resource and can be used to represent the content of the resource to a human. The narrative need not encode all the structured data, but is required to contain sufficient detail to make it "clinically safe" for a human to just read the narrative. Resource definitions may define what content should be represented in the narrative to ensure clinical safety.
Contained resources do not have narrative. Resources that are not contained SHOULD have a narrative. In some cases, a resource may only have text with little or no additional discrete data (as long as all minOccurs=1 elements are satisfied). This may be necessary for data from legacy systems where information is captured as a "text blob" or where text is additionally entered raw or narrated and encoded information is added later.
These resources do not have an independent existence apart from the resource that contains them - they cannot be identified independently, and nor can they have their own independent transaction scope.
This should never be done when the content can be identified properly, as once identification is lost, it is extremely difficult (and context dependent) to restore it again. Contained resources may have profiles and tags In their meta elements, but SHALL NOT have security labels.
Must have either extensions or value[x], not both
exists(f:extension)!=exists(f:*[starts-with(local-name(.), "value")])
The date an individual first registered, for example in the context of an organ donor register this date is not updated if a consent decision or provision is changed.
exists(f:extension)!=exists(f:*[starts-with(local-name(.), 'value')])
May be used to represent additional information that is not part of the basic definition of the resource and that modifies the understanding of the element that contains it and/or the understanding of the containing element's descendants. Usually modifier elements provide negation or qualification. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer is allowed to define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Applications processing a resource are required to check for modifier extensions. Modifier extensions SHALL NOT change the meaning of any elements on Resource or DomainResource (including cannot change the meaning of modifierExtension itself).
There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone.
Modifier extensions allow for extensions that *cannot* be safely ignored to be clearly distinguished from the vast majority of extensions which can be safely ignored. This promotes interoperability by eliminating the need for implementers to prohibit the presence of extensions. For further information, see the [definition of modifier extensions](http://hl7.org/fhir/R4/extensibility.html#modifierExtension).
Modifier extensions are expected to modify the meaning or interpretation of the resource that contains them
Identifier for this record (external references)
Unique identifier for this copy of the Consent Statement.
This identifier identifies this copy of the consent. Where this identifier is also used elsewhere as the identifier for a consent record (e.g. a CDA consent document) then the consent details are expected to be the same.
draft | proposed | active | rejected | inactive | entered-in-error
Indicates the current state of this consent.
This element is labeled as a modifier because the status contains the codes rejected and entered-in-error that mark the Consent as not currently valid.
The Consent Directive that is pointed to might be in various lifecycle states, e.g., a revoked Consent Directive.
This element is labelled as a modifier because it is a status element that contains status entered-in-error which means that the resource should not be treated as valid
Which of the four areas this resource covers (extensible)
A selector of the type of consent being presented: ADR, Privacy, Treatment, Research. This list is now extensible.
Allows changes to codes based on scope selection
The four anticipated uses for the Consent Resource.
Classification of the consent statement - for indexing/retrieval
A classification of the type of consents found in the statement. This element supports indexing and retrieval of consent statements.
A classification of the type of consents found in a consent statement.
Consent for healthcare service, procedure, or activity
The patient/healthcare consumer to whom this consent applies.
Commonly, the patient the consent pertains to is the author, but for young and old people, it may be some other person.
At least reference or a valid identifier shall be present
reference.exists() or identifier.where(system.count() + value.count() >1).exists()
exists(f:reference) or exists(f:identifier)
When this Consent was created or indexed
When this Consent was issued / created / indexed.
This is not the time of the original consent, but the time that this statement was made or derived.
f:effectiveDateTime[matches(@value, '^\d{4}-\d{2}-\d{2}')]
The entity responsible for granting the rights listed in a consent record.
In the context of the Australian Organ Donor Register, the patient is the grantor of consent.
The organization that manages the consent, and the framework within which it is executed.
This consent record is managed by Services Australia via the Medicare Australia repository services operator.
At least reference or display or a valid identifier shall be present
reference.exists() or display.exists() or identifier.where(system.count() + value.count() >1).exists()
exists(f:reference) or exists(f:display) or exists(f:identifier)
The source on which this consent statement is based. The source might be a scanned original paper form, or a reference to a consent that links back to such a source, a reference to a document repository (e.g. XDS) that stores the original consent document.
The source can be contained inline (Attachment), referenced directly (Consent), referenced in a consent repository (DocumentReference), or simply by an identifier (Identifier), e.g. a CDA document id.
Field 19 Informational Material Supplied Indicator
The references to the policies that are included in this consent scope. Policies may be organizational, but are often defined jurisdictionally, or in law.
Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces.
Additional content defined by implementations
May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension.
Extensions that cannot be ignored even if unrecognized
May be used to represent additional information that is not part of the basic definition of the element and that modifies the understanding of the element in which it is contained and/or the understanding of the containing element's descendants. Usually modifier elements provide negation or qualification. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Applications processing a resource are required to check for modifier extensions. Modifier extensions SHALL NOT change the meaning of any elements on Resource or DomainResource (including cannot change the meaning of modifierExtension itself).
Modifier extensions are expected to modify the meaning or interpretation of the element that contains them
Entity or Organization having regulatory jurisdiction or accountability for enforcing policies pertaining to Consent Directives.
This element is for discoverability / documentation and does not modify or qualify the policy rules.
A reference to the specific base computable regulation or policy.
If the policyRule is absent, computable consent would need to be constructed from the elements of the Consent resource.
Might be a unique identifier of a policy set in XACML, or other rules engine.
Whether a treatment instruction (e.g. artificial respiration yes or no) was verified with the patient, his/her family or another authorized person.
Who verified the instruction (Patient, Relative or other Authorized Person).
Specific provisions shall be specified if the individual is willing to donate, otherwise prohibited
not(f:provision) or exists(f:type/@value = 'deny')
Action to take - permit or deny - when the rule conditions are met. Not permitted in root rule, required in all nested rules.
How a rule statement is applied, such as adding additional consent or removing consent.
Who|what controlled by this rule (or group, by role)
Who or what is controlled by this rule. Use group to identify a set of actors by some property they share (e.g. 'admitting officers').
There is no specific actor associated with the exception
How the individual is involved in the resources content that is described in the exception.
How an actor is involved in the consent considerations.
Resource for the actor (or group, by role)
The resource that identifies the actor. To identify actors by type, use group to identify a set of actors by some property they share (e.g. 'admitting officers').
Note that this is the direct action (not the grounds for the action covered in the purpose element). At present, the only action in the understood and tested scope of this resource is 'read'.
Security Labels that define affected resources
A security label, comprised of 0..* security label fields (Privacy tags), which define which resources are controlled by this exception.
If the consent specifies a security label of "R" then it applies to all resources that are labeled "R" or lower. E.g. for Confidentiality, it's a high water mark. For other kinds of security labels, subsumption logic applies. When the purpose of use tag is on the data, access request purpose of use shall not conflict.
Security Labels from the Healthcare Privacy and Security Classification System.
Context of activities covered by this rule
The context of the activities a user is taking - why the user is accessing the data - that are controlled by this rule.
When the purpose of use tag is on the data, access request purpose of use shall not conflict.
What purposes of use are controlled by this exception. If more than one label is specified, operations must have all the specified labels.
The class of information covered by this rule. The type can be a FHIR resource type, a profile on a type, or a CDA document, or some other type that indicates what sort of information the consent relates to.
Multiple types are or'ed together. The intention of the contentType element is that the codes refer to profiles or document types defined in a standard or an implementation guide somewhere.
The class (type) of information a consent rule covers.
e.g. LOINC or SNOMED CT code, etc. in the content
If this code is found in an instance, then the rule applies.
Typical use of this is a Document code with class = CDA.
If this code is found in an instance, then the exception applies.
Timeframe for data controlled by this rule
Clinical or Operational Relevant period of time that bounds the data controlled by this rule.
This has a different sense to the Consent.period - that is when the consent agreement holds. This is the time period of the data that is controlled by the agreement.
The resources controlled by this rule if specific resources are referenced.
instance | related | dependents | authoredby
How the resource reference is interpreted when testing consent restrictions.
How a resource reference is interpreted when testing consent restrictions.
A reference to a specific resource that defines which resources are covered by this consent.
Individual's decision about donation of specific organ or tissue
Individual's decision about donation of specific organ or tissue.
The organ or tissue that is the target of the donation decision
The organ or tissue that is the target of the donation decision.
Extensions are always sliced by (at least) url
Literal reference, Relative, internal or absolute URL
A reference to a location at which the other resource is found. The reference may be a relative reference, in which case it is relative to the service base URL, or an absolute URL that resolves to the location where the resource is found. The reference may be version specific or not. If the reference is not to a FHIR RESTful server, then it should be assumed to be version specific. Internal fragment references (start with '#') refer to contained resources.
Using absolute URLs provides a stable scalable approach suitable for a cloud/web context, while using relative/logical references provides a flexible approach suitable for use when trading across closed eco-system boundaries. Absolute URLs do not need to point to a FHIR RESTful server, though this is the preferred approach. If the URL conforms to the structure "/[type]/[id]" then it should be assumed that the reference is to a FHIR RESTful server.
Type the reference refers to (e.g. "Patient")
The expected type of the target of the reference. If both Reference.type and Reference.reference are populated and Reference.reference is a FHIR URL, both SHALL be consistent. The type is the Canonical URL of Resource Definition that is the type this reference refers to. References are URLs that are relative to http://hl7.org/fhir/StructureDefinition/ e.g. "Patient" is a reference to http://hl7.org/fhir/StructureDefinition/Patient. Absolute URLs are only allowed for logical models (and can only be used in references in logical models, not resources).
This element is used to indicate the type of the target of the reference. This may be used which ever of the other elements are populated (or not). In some cases, the type of the target may be determined by inspection of the reference (e.g. a RESTful URL) or by resolving the target of the reference; if both the type and a reference is provided, the reference SHALL resolve to a resource of the same type as that specified.
Aa resource (or, for logical models, the URI of the logical model).
Logical reference, when literal reference is not known
An identifier for the target resource. This is used when there is no way to reference the other resource directly, either because the entity it represents is not available through a FHIR server, or because there is no way for the author of the resource to convert a known identifier to an actual location. There is no requirement that a Reference.identifier point to something that is actually exposed as a FHIR instance, but it SHALL point to a business concept that would be expected to be exposed as a FHIR instance, and that instance would need to be of a FHIR resource type allowed by the reference.
When an identifier is provided in place of a reference, any system processing the reference will only be able to resolve the identifier to a reference if it understands the business context in which the identifier is used. Sometimes this is global (e.g. a national identifier) but often it is not. For this reason, none of the useful mechanisms described for working with references (e.g. chaining, includes) are possible, nor should servers be expected to be able resolve the reference. Servers may accept an identifier based reference untouched, resolve it, and/or reject it - see CapabilityStatement.rest.resource.referencePolicy. When both an identifier and a literal reference are provided, the literal reference is preferred. Applications processing the resource are allowed - but not required - to check that the identifier matches the literal reference Applications converting a logical reference to a literal reference may choose to leave the logical reference present, or remove it. Reference is intended to point to a structure that can potentially be expressed as a FHIR resource, though there is no need for it to exist as an actual FHIR resource instance - except in as much as an application wishes to actual find the target of the reference. The content referred to be the identifier must meet the logical constraints implied by any limitations on what resource types are permitted for the reference. For example, it would not be legitimate to send the identifier for a drug prescription if the type were Reference(Observation|DiagnosticReport). One of the use-cases for Reference.identifier is the situation where no FHIR representation exists (where the type is Reference (Any).
Plain text narrative that identifies the resource in addition to the resource reference.
This is generally not the same as the Resource.text of the referenced resource. The purpose is to identify what's being referenced, not to fully describe it.
Rules which provide exceptions to the base rule or subrules.