Privacyvragenlijst

Both the protection of personal data and the responsible use of the data pool are essential components of the INDICA project.

This begins with the entry of the data requested, which must be voluntary and anonymous. If the patient does not complete the questionnaire themselves (e.g. in the event of illness or care), the person who does this on their behalf requires the patient's consent.

It is not necessary to register or provide a name or contact details to participate in the data collection.

Participation constitutes a donation of data for scientific use. A right of withdrawal etc. is neither required nor possible due to the guaranteed anonymity.

By participating in the study, consent is given to the processing and analysis of the data provided for scientific purposes.

In the INDICA project, the data is available

as individual entries of the anonymous query - hereinafter referred to as ‘data set’ or ‘patient data donation’ and
as a total amount of all data sets compiled via the Limesurvey database system - hereinafter referred to as ‘database data’.

Note: This website has a separate privacy policy. It describes the use of the website, the mailing list and communication with us in detail.

What happens to the data?

The data records and database data are used exclusively by us and exclusively for scientific purposes.

The contact details provided to us separately enable us to make enquiries and enquiries. The handling of this data is described in the ‘Contact details’ section.

Important: As a matter of principle, we do not disclose any personal data to third parties. Exceptions are only made if an explicit and verifiable consent of the person concerned can be presented.

Responsible person: Maximilian Plenert, contact details see imprint

How is the data processed? 

All data records and database data are scientifically analysed by us. In view of the amount of empirical data available, all standard statistical methods are used for this purpose.

The data collection for scientific purposes runs indefinitely. It is not planned to delete individual data records within a certain period of time, nor is this technically possible due to the guaranteed anonymity.

Once the evaluation phase has been completed, we will implement long-term archiving solutions via a data trustee procedure for data records that are no longer actively used.

Special archiving features apply to metadata such as the timestamp. These are only statistically analysed separately from the data record and are otherwise treated in exactly the same way as the database data.

A special feature applies to the handling of data for the Limesurvey ‘Pause’ function: The survey tool offers the option of pausing when completing the questionnaire and continuing with the entry at a later time. The data collected for this purpose was programmed exclusively for Limesurvey internally to provide this function and is not accessible to us.

Handling of voluntarily provided contact data: INDICA asks for name and contact details on the last page of the survey optionally, voluntarily and separately. This data is used for the purposes of ‘contacting and queries’, ‘verifiability’ and ‘contact enquiries’. For details, see section ‘Contact details’.

Anonymity of the data: Individual data records and certain analyses could be suitable for identifying individual persons. If necessary, the data records or analyses are processed before publication (deletion, masking, reduction of accuracy, etc.) until clear identification or uniqueness of the data record is no longer given in accordance with the requirements of the GDPR.

Right of access and erasure: Due to the status of a patient data donation for scientific use, access and erasure options do not have to be granted. If no contact details have been added to the data set, this is also technically impossible due to the guaranteed anonymity.

Which data is published? The anonymised evaluations of the individual data records and the survey data as a whole are intended for publication. The anonymisation is carried out by our evaluations, for example by combining several data donations from participants into a correspondingly large number and omitting irrelevant but personalisable details or only examining certain questions and constellations. If it is uncertain to what extent a case report, i.e. a certain selection of information from a patient data donation, offers sufficient anonymity, we would contact the participant themselves with a query.

Contact details: In addition to the patient data, we also request contact details separately to enable contact to be made for use for the three purposes listed below. The contact data and the resulting communication are stored separately from the other data. The user is entitled to withdraw consent to the use of contact data for a single purpose at any time or to give consent subsequently in order to be informed of the stored contact data and to have changes and deletions of certain contact data carried out. The patient data itself is a data donation that cannot be withdrawn.

Purpose ‘Contact and queries’: If we have any queries or if it is necessary for scientific processing, we would like to be able to contact the participant.
Purpose ‘Contact requests’: In the event of a contact request from a third party regarding a specific dataset or in cases of enquiries based on specific criteria, we act as gatekeeper. We check the seriousness of the enquiry and then forward the enquiry. The participant can then decide for themselves whether they would like to respond to a contact request - either anonymously, because it is channelled through us, or directly and personally.
Purpose ‘verifiability’: The storage of contact data also serves to enable a random check by an independent body.

For purposes that are yet to be determined, we will explicitly ask all participants whom we are allowed to contact for their consent (opt-in).