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
Logical Model: Shared Data Model for Research Data Access Policy
| Official URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/SharedDataModelResearchDataAccessPolicy | Version: 0.1.0 | |||
| Draft as of 2024-09-26 | Computable Name: CdmResearchDataAccessPolicy | |||
The Shared Data Model for Research Data Access Policy represent the various Data Use Agreements that govern a researcher's access and use of research data.
Shared Data Model Research Data Access Policy
Basic Definition
Access policy communicates the limitations and/or requirements that define how a user may gain access to a particular set of data.
Access policy is limited to describing restrictions that respect the privacy and rights of the participants arising from consents, protocols, or other official documents. It should not be used to describe technical requirements for accessing data.
Access policy is defined using a standard set of codes, with one policy per set of codes that apply to a specified portion of the data. Each Access Policy element also includes a free text field that allows for further description of the policy and necessary steps for gaining access.
For Summary-only submissions, Access Policy elements should be included in order to describe the various data use limitations present in the dataset. For submissions which include data and/or participant records, Access Policy should be associated with the participants and data files to appropriately describe the applicable limitations.
Usage:
- This Logical Model Profile is not used by any profiles in this Implementation Guide
Formal Views of Profile Content
Description of Profiles, Differentials, Snapshots and how the different presentations work.
This structure is derived from Base
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
  SharedDataModelResearchDataAccessPolicy |
0..* | Base | Shared Data Model for Research Data Access Policy Instances of this logical model are not marked to be the target of a Reference | |
  policyCode |
1..* | code | Enumerated values that describe the policy including: dbGaP consent codes, DUO Terms among others. The bindings to these terms should enable groups to create their own codes. Binding: Research Data Access Codes (required) | |
| description |
1..1 | string | Free text further describing the policy, including description of necessary steps for gaining access to data | |
 website |
0..1 | url | TBD | |
| Documentation for this format | ||||
Terminology Bindings (Differential)
| Path | Conformance | ValueSet | URI |
| SharedDataModelResearchDataAccessPolicy.policyCode | required | ResearchDataAccessCodeVS (a valid code from Research Data Access Codes)https://nih-ncpi.github.io/ncpi-fhir-ig-2/ValueSet/research-data-access-code-vsfrom this IG |
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
| SharedDataModelResearchDataAccessPolicy |
0..* | Base | Shared Data Model for Research Data Access Policy Instances of this logical model are not marked to be the target of a Reference | |
| policyCode |
1..* | code | Enumerated values that describe the policy including: dbGaP consent codes, DUO Terms among others. The bindings to these terms should enable groups to create their own codes. Binding: Research Data Access Codes (required) | |
| description |
1..1 | string | Free text further describing the policy, including description of necessary steps for gaining access to data | |
| website |
0..1 | url | TBD | |
| Documentation for this format | ||||
Terminology Bindings
| Path | Conformance | ValueSet | URI |
| SharedDataModelResearchDataAccessPolicy.policyCode | required | ResearchDataAccessCodeVS (a valid code from Research Data Access Codes)https://nih-ncpi.github.io/ncpi-fhir-ig-2/ValueSet/research-data-access-code-vsfrom this IG |
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
| SharedDataModelResearchDataAccessPolicy |
0..* | Base | Shared Data Model for Research Data Access Policy Instances of this logical model are not marked to be the target of a Reference | |
| policyCode |
1..* | code | Enumerated values that describe the policy including: dbGaP consent codes, DUO Terms among others. The bindings to these terms should enable groups to create their own codes. Binding: Research Data Access Codes (required) | |
| description |
1..1 | string | Free text further describing the policy, including description of necessary steps for gaining access to data | |
| website |
0..1 | url | TBD | |
| Documentation for this format | ||||
Terminology Bindings
| Path | Conformance | ValueSet | URI |
| SharedDataModelResearchDataAccessPolicy.policyCode | required | ResearchDataAccessCodeVS (a valid code from Research Data Access Codes)https://nih-ncpi.github.io/ncpi-fhir-ig-2/ValueSet/research-data-access-code-vsfrom this IG |
This structure is derived from Base
Differential View
This structure is derived from Base
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
| SharedDataModelResearchDataAccessPolicy |
0..* | Base | Shared Data Model for Research Data Access Policy Instances of this logical model are not marked to be the target of a Reference | |
| policyCode |
1..* | code | Enumerated values that describe the policy including: dbGaP consent codes, DUO Terms among others. The bindings to these terms should enable groups to create their own codes. Binding: Research Data Access Codes (required) | |
| description |
1..1 | string | Free text further describing the policy, including description of necessary steps for gaining access to data | |
| website |
0..1 | url | TBD | |
| Documentation for this format | ||||
Terminology Bindings (Differential)
| Path | Conformance | ValueSet | URI |
| SharedDataModelResearchDataAccessPolicy.policyCode | required | ResearchDataAccessCodeVS (a valid code from Research Data Access Codes)https://nih-ncpi.github.io/ncpi-fhir-ig-2/ValueSet/research-data-access-code-vsfrom this IG |
Key Elements View
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
| SharedDataModelResearchDataAccessPolicy |
0..* | Base | Shared Data Model for Research Data Access Policy Instances of this logical model are not marked to be the target of a Reference | |
| policyCode |
1..* | code | Enumerated values that describe the policy including: dbGaP consent codes, DUO Terms among others. The bindings to these terms should enable groups to create their own codes. Binding: Research Data Access Codes (required) | |
| description |
1..1 | string | Free text further describing the policy, including description of necessary steps for gaining access to data | |
| website |
0..1 | url | TBD | |
| Documentation for this format | ||||
Terminology Bindings
| Path | Conformance | ValueSet | URI |
| SharedDataModelResearchDataAccessPolicy.policyCode | required | ResearchDataAccessCodeVS (a valid code from Research Data Access Codes)https://nih-ncpi.github.io/ncpi-fhir-ig-2/ValueSet/research-data-access-code-vsfrom this IG |
Snapshot View
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
| SharedDataModelResearchDataAccessPolicy |
0..* | Base | Shared Data Model for Research Data Access Policy Instances of this logical model are not marked to be the target of a Reference | |
| policyCode |
1..* | code | Enumerated values that describe the policy including: dbGaP consent codes, DUO Terms among others. The bindings to these terms should enable groups to create their own codes. Binding: Research Data Access Codes (required) | |
| description |
1..1 | string | Free text further describing the policy, including description of necessary steps for gaining access to data | |
| website |
0..1 | url | TBD | |
| Documentation for this format | ||||
Terminology Bindings
| Path | Conformance | ValueSet | URI |
| SharedDataModelResearchDataAccessPolicy.policyCode | required | ResearchDataAccessCodeVS (a valid code from Research Data Access Codes)https://nih-ncpi.github.io/ncpi-fhir-ig-2/ValueSet/research-data-access-code-vsfrom this IG |
This structure is derived from Base