NCPI FHIR Implementation Guide v2 - Local Development build (v0.1.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions
Resource Profile: NCPI Person
| Official URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/ncpi-person | Version: 0.1.0 | |||
| Draft as of 2025-03-24 | Computable Name: NcpiPerson | |||
Person
Key Guidelines
In situations where a person participates in multiple studies that have participant data scoped in an exclusive way within one or more projects, we have a Person entity. It is functionally a “group” of Participants that are all describing one “actual” person. This is especially to support situations where access policies about that participant might be conflicting and cases where the data itself about the participant might conflict but cannot be adjudicated by the repository.
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 person. This practice is intended to make constructing queries for the same person compatible across different servers (such as QA vs PROD) but also to make the resource URLs more meaningful.
Recommended Practices
Unique participant identifiers are essential to joining the information about a single entity's (i.e., person's) involvement in multiple research studies.
FHIR Mappings
The following fields from the shared data model are to be mapped into the NCPI Participant as shown below:
| Logical Model Property | Cardinality | NCPI FHIR Mapping | Usage Guidance | Notes |
| Person | 1..1 | id | Required | It is strongly recommended for the Person ID to be a unique identifier with an appropriate system |
| Participant | 0..1 | link.target | Required | It is strongly recommended for the Participant ID to be a unique identifier with an appropriate system |
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: NCPI Person "PS_000" which represents the "actual" person participating in a study is linked to a specific research study via NCPI Participant, "GSS123456". In this case, GSS123456 is connected to PS_000 by link.target and if PS_000 participanted 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:
| NCPI Profile | Link to GREGoR Example |
| Research Study | Example JSON |
| Research Study Group | Example JSON |
| Study Participant | Example JSON |
| Participant | Example JSON GSS123456, Example JSON GSS654321 |
| Person | Example JSON |
Usage:
- Examples for this Resource Profile: Person/gregor-example-person and Person/pcgc-example-person
Formal Views of Profile Content
Description of Profiles, Differentials, Snapshots and how the different presentations work.
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
  Person |
0..* | Person | A generic person record dom-2: If the resource is contained in another resource, it SHALL NOT contain nested Resources 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 dom-4: If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated dom-5: If a resource is contained in another resource, it SHALL NOT have a security label dom-6: A resource should have narrative for robust management | |
  id |
Σ | 1..1 | id | Unique participant identifier |
| implicitRules |
?!Σ | 0..1 | uri | A set of rules under which this content was created ele-1: All FHIR elements must have a @value or children |
 modifierExtension |
?! | 0..* | Extension | Extensions that cannot be ignored ele-1: All FHIR elements must have a @value or children ext-1: Must have either extensions or value[x], not both |
| active |
?!Σ | 0..1 | boolean | This person's record is in active use ele-1: All FHIR elements must have a @value or children |
  link |
1..* | BackboneElement | Link to a resource that concerns the same actual person ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource | |
 modifierExtension |
?!Σ | 0..* | Extension | Extensions that cannot be ignored even if unrecognized ele-1: All FHIR elements must have a @value or children ext-1: Must have either extensions or value[x], not both |
  target |
1..1 | Reference(NCPI Participant) | The participant we are describing ele-1: All FHIR elements must have a @value or children | |
| Documentation for this format | ||||
Constraints
| Id | Grade | Path(s) | Details | Requirements |
| dom-2 | error | Person | If the resource is contained in another resource, it SHALL NOT contain nested Resources : contained.contained.empty() | |
| dom-3 | error | Person | 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 | Person | 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 | Person | If a resource is contained in another resource, it SHALL NOT have a security label : contained.meta.security.empty() | |
| dom-6 | best practice | Person | 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() |
Other representations of profile: CSV, Excel, Schematron