HRSA 2024 Uniform Data System (UDS) Patient Level Submission (PLS) (UDS+) FHIR IG
2.0.0 - STU2 Release 1 - Standard for Trial-Use International flag

This page is part of the HRSA Uniform Data System (UDS) Patient Level Submission (PLS) (UDS+ or uds-plus) FHIR IG (v2.0.0: STU2) based on FHIR (HL7® FHIR® Standard) R4. This is the current published version. For a full list of available versions, see the Directory of published versions

Resource Profile: DeIdentifiedUDSPlusRelatedPerson - Detailed Descriptions

Page standards status: Trial-use Maturity Level: 2

Definitions for the de-identified-uds-plus-relatedperson resource profile.

Guidance on how to interpret the contents of this table can be found here

0. RelatedPerson
Definition

The UDS+ profile is based on the **FHIR RelatedPerson resource and establishes the core elements, extensions, vocabularies and value sets for representing RelatedPerson of patients for UDS+ program.


Information about a person that is involved in the care for a patient, but who is not the target of healthcare, nor has a formal responsibility in the care process.

ShortDe-Identified UDS Plus RelatedPersonA person that is related to a patient, but who is not a direct target of care
Control0..*
Is Modifierfalse
Summaryfalse
Invariantsdom-2: If the resource is contained in another resource, it SHALL NOT contain nested Resources (contained.contained.empty())
dom-3: 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())
dom-4: 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())
dom-5: If a resource is contained in another resource, it SHALL NOT have a security label (contained.meta.security.empty())
dom-6: A resource should have narrative for robust management (text.`div`.exists())
2. RelatedPerson.id
Definition

De-dentified RelatedPerson identifier.


The logical id of the resource, as used in the URL for the resource. Once assigned, this value never changes.

ShortThe de-identified RelatedPerson identifier created by the health center to send data to HRSA.Logical id of this artifact
Comments

The only time that a resource does not have an id is when it is being submitted to the server using a create operation.

Control0..1
Typeidstring
Is Modifierfalse
Must Supporttrue
Summarytrue
4. RelatedPerson.implicitRules
Definition

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.

ShortA set of rules under which this content was created
Comments

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.

Control0..1
Typeuri
Is Modifiertrue because 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
Primitive ValueThis primitive element may be present, or absent, or replaced by an extension
Summarytrue
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
6. RelatedPerson.text
Definition

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.

ShortCannot include any text in the resource as part of the de-identified data.Text summary of the resource, for human interpretation
Comments

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.

Control0..01
TypeNarrative
Is Modifierfalse
Must Supportfalse
Summaryfalse
Alternate Namesnarrative, html, xhtml, display
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
8. RelatedPerson.contained
Definition

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.

ShortCannot include any contained resources in the resource as part of the de-identified data.Contained, inline Resources
Comments

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.

Control0..0*
TypeResource
Is Modifierfalse
Must Supportfalse
Summaryfalse
Alternate Namesinline resources, anonymous resources, contained resources
10. RelatedPerson.extension
Definition

An Extension


May be used to represent additional information that is not part of the basic definition of the resource. 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.

ShortExtensionAdditional content defined by implementations
Comments

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.

Control0..0*
TypeExtension
Is Modifierfalse
Must Supportfalse
Summaryfalse
Alternate Namesextensions, user content
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
ext-1: Must have either extensions or value[x], not both (extension.exists() != value.exists())
12. RelatedPerson.modifierExtension
Definition

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).

ShortExtensions that cannot be ignored
Comments

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.

Control0..*
TypeExtension
Is Modifiertrue because Modifier extensions are expected to modify the meaning or interpretation of the resource that contains them
Summaryfalse
Requirements

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.

Alternate Namesextensions, user content
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
ext-1: Must have either extensions or value[x], not both (extension.exists() != value.exists())
14. RelatedPerson.active
Definition

Whether this related person record is in active use.

ShortWhether this related person's record is in active use
Comments

This element is labeled as a modifier because it may be used to mark that the resource was created in error.

Control0..1
Typeboolean
Is Modifiertrue because This element is labelled as a modifier because it is a status element that can indicate that a record should not be treated as valid
Primitive ValueThis primitive element may be present, or absent, or replaced by an extension
Summarytrue
Requirements

Need to be able to mark a related person record as not to be used, such as if it was created in error.

Meaning if MissingThis resource is generally assumed to be active if no value is provided for the active element
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
16. RelatedPerson.patient
Definition

The patient this person is related to.

ShortThe patient this person is related to
Control1..1
TypeReference(De-Identified UDS Plus Patient, Patient)
Is Modifierfalse
Must Supporttrue
Summarytrue
Requirements

We need to know which patient this RelatedPerson is related to.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
18. RelatedPerson.patient.display
Definition

Plain text narrative that identifies the resource in addition to the resource reference.

ShortText alternative for the resource
Comments

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.

Control0..01
Typestring
Is Modifierfalse
Primitive ValueThis primitive element may be present, or absent, or replaced by an extension
Must Supportfalse
Summarytrue
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
20. RelatedPerson.relationship
Definition

The nature of the relationship between a patient and the related person.

ShortThe nature of the relationship
Control0..*
BindingUnless not suitable, these codes SHALL be taken from The codes SHOULD be taken from PatientRelationshipTypehttp://hl7.org/fhir/ValueSet/relatedperson-relationshiptype
(extensible to http://hl7.org/fhir/ValueSet/relatedperson-relationshiptype)

The set of codes to be used for UDS+ reporting.


The nature of the relationship between a patient and the related person.

TypeCodeableConcept
Is Modifierfalse
Must Supporttrue
Summarytrue
Requirements

We need to know the relationship with the patient since it influences the interpretation of the information attributed to this person.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
22. RelatedPerson.name
Definition

A name associated with the person.

ShortCannot include any name in the resource as part of the de-identified data.A name associated with the person
Control0..0*
TypeHumanName
Is Modifierfalse
Must Supportfalse
Summarytrue
Requirements

Related persons need to be identified by name, but it is uncommon to need details about multiple other names for that person.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
24. RelatedPerson.telecom
Definition

A contact detail for the person, e.g. a telephone number or an email address.

ShortCannot include any telecom information in the resource as part of the de-identified data.A contact detail for the person
Comments

Person may have multiple ways to be contacted with different uses or applicable periods. May need to have options for contacting the person urgently, and also to help with identification.

Control0..0*
TypeContactPoint
Is Modifierfalse
Must Supportfalse
Summarytrue
Requirements

People have (primary) ways to contact them in some way such as phone, email.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
26. RelatedPerson.gender
Definition

Administrative Gender - the gender that the person is considered to have for administration and record keeping purposes.

ShortCannot include any gender information in the resource as part of the de-identified data.male | female | other | unknown
Control0..01
BindingThe codes SHALL be taken from AdministrativeGenderhttp://hl7.org/fhir/ValueSet/administrative-gender|4.0.1
(required to http://hl7.org/fhir/ValueSet/administrative-gender|4.0.1)

The gender of a person used for administrative purposes.

Typecode
Is Modifierfalse
Primitive ValueThis primitive element may be present, or absent, or replaced by an extension
Must Supportfalse
Summarytrue
Requirements

Needed for identification of the person, in combination with (at least) name and birth date.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
28. RelatedPerson.birthDate
Definition

The date on which the related person was born.

ShortCannot include any date of birth information in the resource as part of the de-identified data.The date on which the related person was born
Control0..01
Typedate
Is Modifierfalse
Primitive ValueThis primitive element may be present, or absent, or replaced by an extension
Must Supportfalse
Summarytrue
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
30. RelatedPerson.address
Definition

Address where the related person can be contacted or visited.

ShortCannot include any address information in the resource as part of the de-identified data.Address where the related person can be contacted or visited
Control0..0*
TypeAddress
Is Modifierfalse
Must Supportfalse
Summarytrue
Requirements

Need to keep track where the related person can be contacted per postal mail or visited.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
32. RelatedPerson.photo
Definition

Image of the person.

ShortCannot include any photo information in the resource as part of the de-identified data.Image of the person
Control0..0*
TypeAttachment
Is Modifierfalse
Must Supportfalse
Summaryfalse
Requirements

Many EHR systems have the capability to capture an image of persons. Fits with newer social media usage too.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
34. RelatedPerson.period
Definition

The period of time during which this relationship is or was active. If there are no dates defined, then the interval is unknown.

ShortPeriod of time that this relationship is considered valid
Control0..1
TypePeriod
Is Modifierfalse
Must Supportfalse
Summaryfalse
Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))
uds-plus-rel-10: All Period.start data elements should be truncated to a year only for de-identified resources. ($this is Period and Period.start.exists() implies $this.start.toString().length() = 4)
uds-plus-rel-10a: All Period.start data elements should have valid year > 1900 ($this is Period and Period.start.exists() implies $this.start.toString() >= '1900')
uds-plus-rel-10b: All Period.start data elements should have valid year < 2030 ($this is Period and Period.start.exists() implies $this.start.toString() <= '2030')
uds-plus-rel-11: All Period.end data elements should be truncated to a year only for de-identified resources. ($this is Period and Period.end.exists() implies $this.end.toString().length() = 4)
uds-plus-rel-11a: All Period.end data elements should have valid year > 1900 ($this is Period and Period.end.exists() implies $this.end.toString() >= '1900')
uds-plus-rel-11b: All Period.end data elements should have valid year < 2030 ($this is Period and Period.end.exists() implies $this.end.toString() <= '2030')
36. RelatedPerson.communication
Definition

A language which may be used to communicate with about the patient's health.

ShortCannot include any communication information in the resource as part of the de-identified data.A language which may be used to communicate with about the patient's health
Comments

If no language is specified, this implies that the default local language is spoken. If you need to convey proficiency for multiple modes, then you need multiple RelatedPerson.Communication associations. If the RelatedPerson does not speak the default local language, then the Interpreter Required Standard can be used to explicitly declare that an interpreter is required.

Control0..0*
TypeBackboneElement
Is Modifierfalse
Must Supportfalse
Summaryfalse
Requirements

If a related person does not speak the local language, interpreters may be required, so languages spoken and proficiency is an important things to keep track of both for patient and other persons of interest.

Invariantsele-1: All FHIR elements must have a @value or children (hasValue() or (children().count() > id.count()))