De-identified, Anonymized FHIR Profiles Library
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De-identified, Anonymized FHIR Profiles Library, published by HL7 International / Cross-Group Projects. This guide is not an authorized publication; it is the continuous build for version 1.0.0-ballot built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/HL7/fhir-dapl/ and changes regularly. See the Directory of published versions

Background

Page standards status: Trial-use

This section provides an overview of the Implementation Guide (IG).

IG Purpose

The purpose of this IG is to define a set of profiles that can be used to represent de-identified and anonymized information using FHIR profiles. The de-identified profiles and anonymized profiles are used for use cases such as

  • Health centers reporting to Federal agencies
  • Health centers releasing data for research

Read the Use Cases section of the DARTS IG to get an idea of the various systems, actors and the data flow requirements.

Guiding Principles for the IG

The following are the guiding principles for the DAPL IG.

  • Define profiles that will enable data submitters to create de-identified/anonymized information using data present in the form of US Core or base FHIR resources.

  • Align with existing standards and regulations (e.g., ONC 2015 Edition, 2015 Edition Cures Update, HTI-1, HTI-4), United States Core Data for Interoperability (USCDI) while improving the timeliness and completeness of data for the specified Use Cases.

IG In-Scope Requirements

The following requirements are in-scope for the DAPL IG based on the use cases.

  • Define the set of profiles that can be used to represent de-identified data
  • Define the set of profiles that can be used to represent anonymized data

IG Out-of-Scope

The following aspects are out-of-scope for the DAPL IG based on the use cases.

  • Risk Assessment on the profiles prior to exchanging data with the profiles

  • Policies and processes followed by Data Submitters which allow data sharing, collecting of consent, or compliance with regulatory requirements.

  • Mechanisms to identify the patients for whom the data needs to be de-identified or anonymized

Underlying Specifications

This guide is based on the HL7 FHIR R4 standard, and is aligned with US Core IG terminology.

Implementers of the DAPL IG must understand basic information about the underlying specifications listed above.