Scientific Concept of the National Cohort (status ... - Nationale Kohorte

Use of secondary data
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A.7 Ethical aspects
The use of secondary data requires particular data protection provisions. Therefore, we
intend to establish a competence center for secondary data. The procedures for the collection
and use of secondary data from different sources have not been finalized yet and may
differ depending on the source of secondary data. Both central and local data requests are
possible. Procedures being discussed for using health insurance data and social insurance
data are described in the following.
a) health insurance data
The procedure for using health insurance data may be as follows:
� Participants will be asked to give consent to communicate the name and address of
the health insurance and their health insurance number. In the participants’ information
leaflet, they will be informed about the use of their data.
� After they give their consent, the name and address of the health insurance and their
health insurance number will be recorded together with the personal identifying data
at the study center and the trust center.
� The trust center or the competence center for secondary data generates a new identification
number for health insurance data (ID-HI) for a given ID-S. The trust center
sends the ID-HI to the respective health insurance together with the participants’
health insurance number and the request.
� The health insurance sends the requested data with the ID-HI to the competence
center for secondary data. The competence center for secondary data processes the
data, replaces the ID-HI, and sends the standardized data together with the ID-S to
the integration center. By following this procedure, the trust center would not receive
personal medical or social data.
b) Social insurance data
The procedure for the use of social insurance data may be as follows:
� Participants will be asked to consent to providing their social insurance number to the
study center (on a separate sheet). In the information leaflet they will be informed that
this will only be done in cooperation with the Institute for Employment Research (Institut
für Arbeitsmarkt- und Berufsforschung, IAB), the research institute of the Federal
Employment Agency. Furthermore, participants will be informed about the use of their
data and about the content of the social insurance data. They will also give consent
that study data can be linked to social insurance data.
� After they give their consent, a new identification number for social insurance data
(ID-SI) will be generated (at the study center or the competence center for secondary
data). This ID-SI will be transferred together with the social insurance number to the
IAB. Additionally, the ID-SI will be sent to the competence center (together with the ID-
S). The social insurance number will only be recorded temporarily in the study center.
� The IAB records the social insurance number together with the ID-SI for the longterm.
Upon request, the IAB selects the requested data (e.g., occupational history on
a yearly basis). The IAB will generate a coded data set for scientific analysis and will
transfer this data set with the ID-SI to the competence center.
� The competence center replaces the ID-SI with the ID-S and sends the standardized
data together with the ID-S to the integration center.
� The IAB will contact the German statutory pension fund (Deutsche Rentenversicherung)
to clarify the modalities of German statutory pension fund participation.
A.7