HL7 Personal Health Record System Functional Model, Release 2
2.0.1-ballot - Normative Ballot

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Requirements: S.4.1.2 Manage De-Identified Data Request Process (Function)

Page standards status: Informative
Statement N:

Provide PHR Account Holder data in a manner that meets local requirements for de-identification.

 Description I:

When the PHR Account Holder desires to share his/her information in a de-identified state, the PHR Account Holder can export the data in a fashion that meets requirements for de-identification in that locale or realm.

Example(s): If a person wants to participate in a study that will utilize de-identified data, then the system should provide the ability to de-identify this data according to the requirements of the study.

In Germany, when a PHR Account Holder’s subscription is cancelled, the PHR data may be maintained. But if the data is maintained, it must be maintained in a de-identified state or be pseudonymized (similar to the limited data set in the U.S. Privacy Rule).

 Actors:
ehr Criteria N:
S.4.1.2#01 SHOULD

The system SHOULD provide the ability for the PHR Account Holder to de-identify his or her information as needed to meet the requirements of a study or other request.
S.4.1.2#02 SHOULD

The system SHOULD capture the source and date of a request for de-identified data.
S.4.1.2#03 SHOULD

The system SHOULD provide the ability to capture the date of transmission, data transmitted, and the target of the de-identified data.
S.4.1.2#04 SHOULD

The system SHOULD provide the ability to capture confirmation of the target’s receipt of the data.
S.4.1.2#05 SHOULD

The system SHOULD provide the ability to render the history of data transmissions.
S.4.1.2#06 dependent SHOULD

The system SHOULD provide the ability to de-identify data according to organizational policy and/or jurisdictional law.