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How OpenSpecimen anonymizes data?

Anonymizing data can mean different things to different people. This article lists all the different features related to anonymizing data.

  1. Handling user access to patient data fields
  2. Generating anonymized participant ID

  3. Anonymization during the distribution of specimens
  4. Anonymization after participant consent withdrawal

Handling patient identifiers (PHI)

User roles can be created without access to patient data fields, i.e, when they log in, all the confidential patient fields will be blanked out. The administrator can control which user can see patient data.

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Admin view of the participant overview page.

Participant overview page view for a user who does not have access to PHI.

Registering participant

When creating participant records, OpenSpecimen has mechanisms to automatically generate de-identified participant IDs (known as PPID). This ID does not contain any patient identifiers(PHI) and therefore safe to use when sharing data with others.

Distributing specimens

When distributing specimens, by default only de-identified information is included in the distribution report. Also, an anonymized specimen label can be generated which is specific to that distribution. This label can also be printed during distribution so that the specimens can be re-labeled before sending it to researchers.

Consent withdrawal

When consents are withdrawn, often there is a need to destroy all the specimens, mark the specimen as closed, and anonymize the participant information. This can be done using the anonymize button on the participant overview page. Next versions of OpenSpecimen will enable doing this in one-click on the consent page itself.

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