Key Guidelines

The NCPI Participant profile is based on the standard resource type, Patient and is intended to represent an individual participating in a specific research study.

Added Profile Restrictions

In order to ensure that our resources are interoperable across studies, we have employed a number of restrictions that should make consuming Patient resources more consistent.

• ID should be a globally unique identifier associated with the patient. This practice is intended to make constructing queries for the same patient compatible across different servers (such as QA vs PROD) but also to make the resource URLs more meaningful.
• Identifier should have all appropriate identifiers with a meaningful system/value pair. Such identifiers may include dbGaP accession IDs, global and external IDs, etc.
• Race and ethnicity must be defined using OMB Categories using the relevant US Core extensions (us-core-race extension & us-core-ethnicity)
• Where birth date is known, the extension, research-date-of-birth-method must be provided to indicate the method used in the construction of that value.

Recommended Practices

While only some of the fields in NCPI Participant are strictly required, it is recommended that users of this IG fill out as much information as they have available for a given participant.

FHIR Mappings

The following fields from the shared data model are to be mapped into the NCPI Participant as shown below:

Study Participation

The conventional FHIR mechanism to link Patient resources to a ResearchStudy is through the use of a ResearchSubject resource. Let's use GREGoR data as an example: our example NCPI Participant, "GSS123456", is linked to NCPI Person "PS_000" which represents the "actual" person participating in a study. In this case, GSS123456 is connected to PS_000 by link.target and if PS_000 participated in another study, their other unique NCPI Participant ID could be similarly linked. NCPI Study Participant connects NCPI Research Study, relevant Access Policies, and an NCPI Participant into a single profile while NCPI Study Group contains a list of Study Participants.

For further information, see the Participant, Research Study, and Person examples:

• Differential Table
• Key Elements Table
• Snapshot Table
• Statistics/References
• All

This structure is derived from Patient

Name	Flags	Card.	Type	Description & Constraints
Patient			Patient
id		1..1	id	ParticipantID - Unique participant identifier. System identifier used for internal references.
Slices for extension		0..*	Extension	Extension Slice: Unordered, Open by value:url
us-core-birth-sex		0..1	code	Sex assigned at birth (or pre-natal observed sex) URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex Binding: Birth Sex (required): Code for sex assigned at birth
us-core-race		0..1	(Complex)	US Core Race URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
us-core-ethnicity		0..1	(Complex)	US Core Ethnicity URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
population		0..1	string, CodeableConcept	Population, Race, and/or Ethnicity information. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
dob-method		0..1	Coding	Specifies method used to alter DOB for research sharing. Details should be available in the study protocols. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method Binding: Enumerations for how DOB was constructed (extensible)
age-at-last-vital-status		0..1	Quantity	Age or date of last vital status URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status
identifier		0..*	Identifier	External IDs for this participant. Requires scoping.
birthDate		0..1	date	Date of Birth of the participant. Details of privacy method should be included in DOBMethod
deceased[x]		0..1	boolean, dateTime	Implementers can provide relativeDateTime or actual date or T/F, depending on data available.
Documentation for this format

Name	Flags	Card.	Type	Description & Constraints
Patient		0..*	Patient	Information about an individual or animal receiving health care services
id	Σ	1..1	id	ParticipantID - Unique participant identifier. System identifier used for internal references.
implicitRules	?!Σ	0..1	uri	A set of rules under which this content was created
Slices for extension		0..*	Extension	Extension Slice: Unordered, Open by value:url
us-core-birth-sex		0..1	code	Sex assigned at birth (or pre-natal observed sex) URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex Binding: Birth Sex (required): Code for sex assigned at birth
us-core-race		0..1	(Complex)	US Core Race URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
us-core-ethnicity		0..1	(Complex)	US Core Ethnicity URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
population		0..1	string, CodeableConcept	Population, Race, and/or Ethnicity information. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
dob-method		0..1	Coding	Specifies method used to alter DOB for research sharing. Details should be available in the study protocols. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method Binding: Enumerations for how DOB was constructed (extensible)
age-at-last-vital-status		0..1	Quantity	Age or date of last vital status URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status
modifierExtension	?!	0..*	Extension	Extensions that cannot be ignored
identifier	Σ	0..*	Identifier	External IDs for this participant. Requires scoping.
active	?!Σ	0..1	boolean	Whether this patient's record is in active use
birthDate	Σ	0..1	date	Date of Birth of the participant. Details of privacy method should be included in DOBMethod
deceased[x]	?!Σ	0..1		Implementers can provide relativeDateTime or actual date or T/F, depending on data available.
deceasedBoolean			boolean
deceasedDateTime			dateTime
link	?!Σ	0..*	BackboneElement	Link to another patient resource that concerns the same actual person
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
other	Σ	1..1	Reference(Patient | RelatedPerson)	The other patient or related person resource that the link refers to
type	Σ	1..1	code	replaced-by | replaces | refer | seealso Binding: LinkType (required): The type of link between this patient resource and another patient resource.
Documentation for this format

Terminology Bindings

Path	Conformance	ValueSet	URI
Patient.link.type	required	LinkType http://hl7.org/fhir/ValueSet/link-type|4.3.0 from the FHIR Standard

Constraints

Id	Grade	Path(s)	Details	Requirements
dom-2	error	Patient	If the resource is contained in another resource, it SHALL NOT contain nested Resources : contained.contained.empty()
dom-3	error	Patient	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.exists() and ('#'+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(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4	error	Patient	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	error	Patient	If a resource is contained in another resource, it SHALL NOT have a security label : contained.meta.security.empty()
dom-6	best practice	Patient	A resource should have narrative for robust management : text.`div`.exists()
ele-1	error	**ALL** elements	All FHIR elements must have a @value or children : hasValue() or (children().count() > id.count())
ext-1	error	**ALL** extensions	Must have either extensions or value[x], not both : extension.exists() != value.exists()

Name	Flags	Card.	Type	Description & Constraints
Patient		0..*	Patient	Information about an individual or animal receiving health care services
id	Σ	1..1	id	ParticipantID - Unique participant identifier. System identifier used for internal references.
meta	Σ	0..1	Meta	Metadata about the resource
implicitRules	?!Σ	0..1	uri	A set of rules under which this content was created
language		0..1	code	Language of the resource content Binding: CommonLanguages (preferred): IETF language tag Additional Bindings Purpose AllLanguages Max Binding
text		0..1	Narrative	Text summary of the resource, for human interpretation
contained		0..*	Resource	Contained, inline Resources dom-r4b: Containing new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems
Slices for extension		0..*	Extension	Extension Slice: Unordered, Open by value:url
us-core-birth-sex		0..1	code	Sex assigned at birth (or pre-natal observed sex) URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex Binding: Birth Sex (required): Code for sex assigned at birth
us-core-race		0..1	(Complex)	US Core Race URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
us-core-ethnicity		0..1	(Complex)	US Core Ethnicity URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
population		0..1	string, CodeableConcept	Population, Race, and/or Ethnicity information. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
dob-method		0..1	Coding	Specifies method used to alter DOB for research sharing. Details should be available in the study protocols. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method Binding: Enumerations for how DOB was constructed (extensible)
age-at-last-vital-status		0..1	Quantity	Age or date of last vital status URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status
modifierExtension	?!	0..*	Extension	Extensions that cannot be ignored
identifier	Σ	0..*	Identifier	External IDs for this participant. Requires scoping.
active	?!Σ	0..1	boolean	Whether this patient's record is in active use
name	Σ	0..*	HumanName	A name associated with the patient
telecom	Σ	0..*	ContactPoint	A contact detail for the individual
gender	Σ	0..1	code	male | female | other | unknown Binding: AdministrativeGender (required): The gender of a person used for administrative purposes.
birthDate	Σ	0..1	date	Date of Birth of the participant. Details of privacy method should be included in DOBMethod
deceased[x]	?!Σ	0..1		Implementers can provide relativeDateTime or actual date or T/F, depending on data available.
deceasedBoolean			boolean
deceasedDateTime			dateTime
address	Σ	0..*	Address	An address for the individual
maritalStatus		0..1	CodeableConcept	Marital (civil) status of a patient Binding: Marital Status Codes (extensible): The domestic partnership status of a person.
multipleBirth[x]		0..1		Whether patient is part of a multiple birth
multipleBirthBoolean			boolean
multipleBirthInteger			integer
photo		0..*	Attachment	Image of the patient
contact	C	0..*	BackboneElement	A contact party (e.g. guardian, partner, friend) for the patient pat-1: SHALL at least contain a contact's details or a reference to an organization
id		0..1	string	Unique id for inter-element referencing
extension		0..*	Extension	Additional content defined by implementations
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
relationship		0..*	CodeableConcept	The kind of relationship Binding: PatientContactRelationship (extensible): The nature of the relationship between a patient and a contact person for that patient.
name		0..1	HumanName	A name associated with the contact person
telecom		0..*	ContactPoint	A contact detail for the person
address		0..1	Address	Address for the contact person
gender		0..1	code	male | female | other | unknown Binding: AdministrativeGender (required): The gender of a person used for administrative purposes.
organization	C	0..1	Reference(Organization)	Organization that is associated with the contact
period		0..1	Period	The period during which this contact person or organization is valid to be contacted relating to this patient
communication		0..*	BackboneElement	A language which may be used to communicate with the patient about his or her health
id		0..1	string	Unique id for inter-element referencing
extension		0..*	Extension	Additional content defined by implementations
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
language		1..1	CodeableConcept	The language which can be used to communicate with the patient about his or her health Binding: CommonLanguages (preferred): IETF language tag Additional Bindings Purpose AllLanguages Max Binding
preferred		0..1	boolean	Language preference indicator
generalPractitioner		0..*	Reference(Organization | Practitioner | PractitionerRole)	Patient's nominated primary care provider
managingOrganization	Σ	0..1	Reference(Organization)	Organization that is the custodian of the patient record
link	?!Σ	0..*	BackboneElement	Link to another patient resource that concerns the same actual person
id		0..1	string	Unique id for inter-element referencing
extension		0..*	Extension	Additional content defined by implementations
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
other	Σ	1..1	Reference(Patient | RelatedPerson)	The other patient or related person resource that the link refers to
type	Σ	1..1	code	replaced-by | replaces | refer | seealso Binding: LinkType (required): The type of link between this patient resource and another patient resource.
Documentation for this format

Terminology Bindings

Path	Conformance	ValueSet	URI
Patient.language	preferred	CommonLanguages Additional Bindings Purpose AllLanguages Max Binding http://hl7.org/fhir/ValueSet/languages from the FHIR Standard
Patient.gender	required	AdministrativeGender http://hl7.org/fhir/ValueSet/administrative-gender|4.3.0 from the FHIR Standard
Patient.maritalStatus	extensible	Marital Status Codes http://hl7.org/fhir/ValueSet/marital-status from the FHIR Standard
Patient.contact.relationship	extensible	PatientContactRelationship http://hl7.org/fhir/ValueSet/patient-contactrelationship from the FHIR Standard
Patient.contact.gender	required	AdministrativeGender http://hl7.org/fhir/ValueSet/administrative-gender|4.3.0 from the FHIR Standard
Patient.communication.language	preferred	CommonLanguages Additional Bindings Purpose AllLanguages Max Binding http://hl7.org/fhir/ValueSet/languages from the FHIR Standard
Patient.link.type	required	LinkType http://hl7.org/fhir/ValueSet/link-type|4.3.0 from the FHIR Standard

Constraints

Id	Grade	Path(s)	Details	Requirements
dom-2	error	Patient	If the resource is contained in another resource, it SHALL NOT contain nested Resources : contained.contained.empty()
dom-3	error	Patient	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.exists() and ('#'+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(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4	error	Patient	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	error	Patient	If a resource is contained in another resource, it SHALL NOT have a security label : contained.meta.security.empty()
dom-6	best practice	Patient	A resource should have narrative for robust management : text.`div`.exists()
dom-r4b	warning	Patient.contained	Containing new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems : ($this is Citation or $this is Evidence or $this is EvidenceReport or $this is EvidenceVariable or $this is MedicinalProductDefinition or $this is PackagedProductDefinition or $this is AdministrableProductDefinition or $this is Ingredient or $this is ClinicalUseDefinition or $this is RegulatedAuthorization or $this is SubstanceDefinition or $this is SubscriptionStatus or $this is SubscriptionTopic) implies (%resource is Citation or %resource is Evidence or %resource is EvidenceReport or %resource is EvidenceVariable or %resource is MedicinalProductDefinition or %resource is PackagedProductDefinition or %resource is AdministrableProductDefinition or %resource is Ingredient or %resource is ClinicalUseDefinition or %resource is RegulatedAuthorization or %resource is SubstanceDefinition or %resource is SubscriptionStatus or %resource is SubscriptionTopic)
ele-1	error	**ALL** elements	All FHIR elements must have a @value or children : hasValue() or (children().count() > id.count())
ext-1	error	**ALL** extensions	Must have either extensions or value[x], not both : extension.exists() != value.exists()
pat-1	error	Patient.contact	SHALL at least contain a contact's details or a reference to an organization : name.exists() or telecom.exists() or address.exists() or organization.exists()

Differential View

This structure is derived from Patient

Name	Flags	Card.	Type	Description & Constraints
Patient			Patient
id		1..1	id	ParticipantID - Unique participant identifier. System identifier used for internal references.
Slices for extension		0..*	Extension	Extension Slice: Unordered, Open by value:url
us-core-birth-sex		0..1	code	Sex assigned at birth (or pre-natal observed sex) URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex Binding: Birth Sex (required): Code for sex assigned at birth
us-core-race		0..1	(Complex)	US Core Race URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
us-core-ethnicity		0..1	(Complex)	US Core Ethnicity URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
population		0..1	string, CodeableConcept	Population, Race, and/or Ethnicity information. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
dob-method		0..1	Coding	Specifies method used to alter DOB for research sharing. Details should be available in the study protocols. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method Binding: Enumerations for how DOB was constructed (extensible)
age-at-last-vital-status		0..1	Quantity	Age or date of last vital status URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status
identifier		0..*	Identifier	External IDs for this participant. Requires scoping.
birthDate		0..1	date	Date of Birth of the participant. Details of privacy method should be included in DOBMethod
deceased[x]		0..1	boolean, dateTime	Implementers can provide relativeDateTime or actual date or T/F, depending on data available.
Documentation for this format

Key Elements View

Name	Flags	Card.	Type	Description & Constraints
Patient		0..*	Patient	Information about an individual or animal receiving health care services
id	Σ	1..1	id	ParticipantID - Unique participant identifier. System identifier used for internal references.
implicitRules	?!Σ	0..1	uri	A set of rules under which this content was created
Slices for extension		0..*	Extension	Extension Slice: Unordered, Open by value:url
us-core-birth-sex		0..1	code	Sex assigned at birth (or pre-natal observed sex) URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex Binding: Birth Sex (required): Code for sex assigned at birth
us-core-race		0..1	(Complex)	US Core Race URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
us-core-ethnicity		0..1	(Complex)	US Core Ethnicity URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
population		0..1	string, CodeableConcept	Population, Race, and/or Ethnicity information. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
dob-method		0..1	Coding	Specifies method used to alter DOB for research sharing. Details should be available in the study protocols. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method Binding: Enumerations for how DOB was constructed (extensible)
age-at-last-vital-status		0..1	Quantity	Age or date of last vital status URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status
modifierExtension	?!	0..*	Extension	Extensions that cannot be ignored
identifier	Σ	0..*	Identifier	External IDs for this participant. Requires scoping.
active	?!Σ	0..1	boolean	Whether this patient's record is in active use
birthDate	Σ	0..1	date	Date of Birth of the participant. Details of privacy method should be included in DOBMethod
deceased[x]	?!Σ	0..1		Implementers can provide relativeDateTime or actual date or T/F, depending on data available.
deceasedBoolean			boolean
deceasedDateTime			dateTime
link	?!Σ	0..*	BackboneElement	Link to another patient resource that concerns the same actual person
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
other	Σ	1..1	Reference(Patient | RelatedPerson)	The other patient or related person resource that the link refers to
type	Σ	1..1	code	replaced-by | replaces | refer | seealso Binding: LinkType (required): The type of link between this patient resource and another patient resource.
Documentation for this format

Terminology Bindings

Path	Conformance	ValueSet	URI
Patient.link.type	required	LinkType http://hl7.org/fhir/ValueSet/link-type|4.3.0 from the FHIR Standard

Constraints

Id	Grade	Path(s)	Details	Requirements
dom-2	error	Patient	If the resource is contained in another resource, it SHALL NOT contain nested Resources : contained.contained.empty()
dom-3	error	Patient	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.exists() and ('#'+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(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4	error	Patient	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	error	Patient	If a resource is contained in another resource, it SHALL NOT have a security label : contained.meta.security.empty()
dom-6	best practice	Patient	A resource should have narrative for robust management : text.`div`.exists()
ele-1	error	**ALL** elements	All FHIR elements must have a @value or children : hasValue() or (children().count() > id.count())
ext-1	error	**ALL** extensions	Must have either extensions or value[x], not both : extension.exists() != value.exists()

Snapshot View

Name	Flags	Card.	Type	Description & Constraints
Patient		0..*	Patient	Information about an individual or animal receiving health care services
id	Σ	1..1	id	ParticipantID - Unique participant identifier. System identifier used for internal references.
meta	Σ	0..1	Meta	Metadata about the resource
implicitRules	?!Σ	0..1	uri	A set of rules under which this content was created
language		0..1	code	Language of the resource content Binding: CommonLanguages (preferred): IETF language tag Additional Bindings Purpose AllLanguages Max Binding
text		0..1	Narrative	Text summary of the resource, for human interpretation
contained		0..*	Resource	Contained, inline Resources dom-r4b: Containing new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems
Slices for extension		0..*	Extension	Extension Slice: Unordered, Open by value:url
us-core-birth-sex		0..1	code	Sex assigned at birth (or pre-natal observed sex) URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex Binding: Birth Sex (required): Code for sex assigned at birth
us-core-race		0..1	(Complex)	US Core Race URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
us-core-ethnicity		0..1	(Complex)	US Core Ethnicity URL: http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
population		0..1	string, CodeableConcept	Population, Race, and/or Ethnicity information. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
dob-method		0..1	Coding	Specifies method used to alter DOB for research sharing. Details should be available in the study protocols. URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method Binding: Enumerations for how DOB was constructed (extensible)
age-at-last-vital-status		0..1	Quantity	Age or date of last vital status URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status
modifierExtension	?!	0..*	Extension	Extensions that cannot be ignored
identifier	Σ	0..*	Identifier	External IDs for this participant. Requires scoping.
active	?!Σ	0..1	boolean	Whether this patient's record is in active use
name	Σ	0..*	HumanName	A name associated with the patient
telecom	Σ	0..*	ContactPoint	A contact detail for the individual
gender	Σ	0..1	code	male | female | other | unknown Binding: AdministrativeGender (required): The gender of a person used for administrative purposes.
birthDate	Σ	0..1	date	Date of Birth of the participant. Details of privacy method should be included in DOBMethod
deceased[x]	?!Σ	0..1		Implementers can provide relativeDateTime or actual date or T/F, depending on data available.
deceasedBoolean			boolean
deceasedDateTime			dateTime
address	Σ	0..*	Address	An address for the individual
maritalStatus		0..1	CodeableConcept	Marital (civil) status of a patient Binding: Marital Status Codes (extensible): The domestic partnership status of a person.
multipleBirth[x]		0..1		Whether patient is part of a multiple birth
multipleBirthBoolean			boolean
multipleBirthInteger			integer
photo		0..*	Attachment	Image of the patient
contact	C	0..*	BackboneElement	A contact party (e.g. guardian, partner, friend) for the patient pat-1: SHALL at least contain a contact's details or a reference to an organization
id		0..1	string	Unique id for inter-element referencing
extension		0..*	Extension	Additional content defined by implementations
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
relationship		0..*	CodeableConcept	The kind of relationship Binding: PatientContactRelationship (extensible): The nature of the relationship between a patient and a contact person for that patient.
name		0..1	HumanName	A name associated with the contact person
telecom		0..*	ContactPoint	A contact detail for the person
address		0..1	Address	Address for the contact person
gender		0..1	code	male | female | other | unknown Binding: AdministrativeGender (required): The gender of a person used for administrative purposes.
organization	C	0..1	Reference(Organization)	Organization that is associated with the contact
period		0..1	Period	The period during which this contact person or organization is valid to be contacted relating to this patient
communication		0..*	BackboneElement	A language which may be used to communicate with the patient about his or her health
id		0..1	string	Unique id for inter-element referencing
extension		0..*	Extension	Additional content defined by implementations
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
language		1..1	CodeableConcept	The language which can be used to communicate with the patient about his or her health Binding: CommonLanguages (preferred): IETF language tag Additional Bindings Purpose AllLanguages Max Binding
preferred		0..1	boolean	Language preference indicator
generalPractitioner		0..*	Reference(Organization | Practitioner | PractitionerRole)	Patient's nominated primary care provider
managingOrganization	Σ	0..1	Reference(Organization)	Organization that is the custodian of the patient record
link	?!Σ	0..*	BackboneElement	Link to another patient resource that concerns the same actual person
id		0..1	string	Unique id for inter-element referencing
extension		0..*	Extension	Additional content defined by implementations
modifierExtension	?!Σ	0..*	Extension	Extensions that cannot be ignored even if unrecognized
other	Σ	1..1	Reference(Patient | RelatedPerson)	The other patient or related person resource that the link refers to
type	Σ	1..1	code	replaced-by | replaces | refer | seealso Binding: LinkType (required): The type of link between this patient resource and another patient resource.
Documentation for this format

Terminology Bindings

Path	Conformance	ValueSet	URI
Patient.language	preferred	CommonLanguages Additional Bindings Purpose AllLanguages Max Binding http://hl7.org/fhir/ValueSet/languages from the FHIR Standard
Patient.gender	required	AdministrativeGender http://hl7.org/fhir/ValueSet/administrative-gender|4.3.0 from the FHIR Standard
Patient.maritalStatus	extensible	Marital Status Codes http://hl7.org/fhir/ValueSet/marital-status from the FHIR Standard
Patient.contact.relationship	extensible	PatientContactRelationship http://hl7.org/fhir/ValueSet/patient-contactrelationship from the FHIR Standard
Patient.contact.gender	required	AdministrativeGender http://hl7.org/fhir/ValueSet/administrative-gender|4.3.0 from the FHIR Standard
Patient.communication.language	preferred	CommonLanguages Additional Bindings Purpose AllLanguages Max Binding http://hl7.org/fhir/ValueSet/languages from the FHIR Standard
Patient.link.type	required	LinkType http://hl7.org/fhir/ValueSet/link-type|4.3.0 from the FHIR Standard

Constraints

Id	Grade	Path(s)	Details	Requirements
dom-2	error	Patient	If the resource is contained in another resource, it SHALL NOT contain nested Resources : contained.contained.empty()
dom-3	error	Patient	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.exists() and ('#'+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(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4	error	Patient	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	error	Patient	If a resource is contained in another resource, it SHALL NOT have a security label : contained.meta.security.empty()
dom-6	best practice	Patient	A resource should have narrative for robust management : text.`div`.exists()
dom-r4b	warning	Patient.contained	Containing new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems : ($this is Citation or $this is Evidence or $this is EvidenceReport or $this is EvidenceVariable or $this is MedicinalProductDefinition or $this is PackagedProductDefinition or $this is AdministrableProductDefinition or $this is Ingredient or $this is ClinicalUseDefinition or $this is RegulatedAuthorization or $this is SubstanceDefinition or $this is SubscriptionStatus or $this is SubscriptionTopic) implies (%resource is Citation or %resource is Evidence or %resource is EvidenceReport or %resource is EvidenceVariable or %resource is MedicinalProductDefinition or %resource is PackagedProductDefinition or %resource is AdministrableProductDefinition or %resource is Ingredient or %resource is ClinicalUseDefinition or %resource is RegulatedAuthorization or %resource is SubstanceDefinition or %resource is SubscriptionStatus or %resource is SubscriptionTopic)
ele-1	error	**ALL** elements	All FHIR elements must have a @value or children : hasValue() or (children().count() > id.count())
ext-1	error	**ALL** extensions	Must have either extensions or value[x], not both : extension.exists() != value.exists()
pat-1	error	Patient.contact	SHALL at least contain a contact's details or a reference to an organization : name.exists() or telecom.exists() or address.exists() or organization.exists()

This structure is derived from Patient

Summary

Mandatory: 1 element

Extensions

This structure refers to these extensions:

• http://hl7.org/fhir/us/core/StructureDefinition/us-core-birthsex
• http://hl7.org/fhir/us/core/StructureDefinition/us-core-race
• http://hl7.org/fhir/us/core/StructureDefinition/us-core-ethnicity
• https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-population
• https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-date-of-birth-method
• https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-age-at-last-vital-status

US Core Race Values

The extension binds the following ValueSet. Please note that, in order to view this, you must have logged into your browser using your API key (or provided the key using appriate flow specified by UMLS's docs)

For those who don't have a key, or just want a quick reminder, the codes are listed below:

ValueSet URL: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1021.24

Please note that there are 3 different systems listed in the codes above.