subject-management.rst 10.2 KB
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.. _subject-search:

Search for a subject
====================

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.. figure:: /_images/subject-search.png

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1.  Click on **Subjects** on the front page

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2.  Enter the first name and surname, the email address, or the phone number
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    -   The second first name can be specified, but does not have to be
    -   Keep the order as indicated
    -   No comma needed

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3.  Confirm by clicking **Submit**

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4.  Under the **Matches** tab all matching subjects or their guardians are
    listed

    -   Next to their name the date of birth is listed and, if provided, also
        their email address
    -   If either parts of their name or their email address are matched
        exactly by your search terms, this part is highlighted in yellow
    -   **Details** will take you to the subject overview page
    -   If a subject has any study participations, they are listed below in
        this order: name of the study, the name of the responsible contact
        person and the participation status. The buttons **Recruitment** and
        **Execution** (if the study is still in execution) lead to recruitment
        and execution for this study. Note that whether you can see study
        participations is dependent on your permissions
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5.  If there is a **Match** found, confirm that this is the correct person by
    asking for a second feature (e.g. date of birth).

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    .. warning::
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        Only ask for a second feature, do not disclose any information
        yourself. This is to avoid leaking personal information to imposters.

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.. _subject-create:

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Create a subject
================
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Subject data is split up into subsets that include at least the following
information:
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-   **First name** and **Last name**
-   **Gender**
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-   **Date of birth**
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-   Information on whether the person is **Full of age** or **has legal
    guardian**. If the subject has a legal guardian, you will need to **Add
    guardian** (see instructions in :ref:`subject-contact-tab`)
-   **E-mail** address and/or **Phone number** and/or full postal address
    and/or contacting details of the legal guardian
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-   **Attributes**
-   **Interest in study types**
-   **Privacy level**
-   **Recruitment Consent** given
-   **GDPR requests**
-   **Study Participations**
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In order to create a potential subject in Castellum, please proceed as follows:

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1.  :ref:`subject-search`
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    1.  If there is a **Match** found, the subject is already created in the
        database. You may edit or add information to this subject by clicking
        on **Details** next to the subject. If it turns out that a **Match** is
        a different person with the same name you are free to create a new
        subject.
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    2.  If **No matches can be found**, click on **Create**. If you notice that
        you made a spelling mistake with the names, please do not go back and
        create the person again, but change the name in the following process.
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2.  Define the **Privacy level**
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    -   0 (regular) describes adults without extraordinary features
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    -   1 (increased) indicates children or adults with a legal guardian
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    -   2 (high) represents adults (and their children/wards) who for example
        are public figures
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3.  Click on **Create new subject**
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.. warning::
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    Recruiters often find themselves in fast paced situations when talking to
    new potential subjects. Hence, we decided to support a quick creation of
    subjects. Therefore, a subject is initially created with **very basic**
    information on name and privacy level. To assure a *viable* data set there
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    is much more information you should enter (see :ref:`subject-edit`).
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.. _subject-edit:
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Edit Subject Data
=================

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Subject data consists of several subsets represented as tabs. Tabs that lack
some important information are highlighted by an icon with an exclamation mark.
Below, you'll find a short description for each tab. Please note that tabs need
to be saved upon changes individually.
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.. figure:: /_images/subject-tabs.png

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.. _subject-overview-tab:
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Overview Tab
------------

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This tab gives you a quick overview of the subject data. Importantly, it offers
different legal bases for storing the subject data in Castellum. You can check,
add or rather edit the consent that applies:
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-   **Recruitment consent**
-   **Study consent**
-   **Guardianship**
-   **Subject blocked**

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.. _subject-contact-tab:
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Contact Tab
-----------
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This tab allows you to set up common information needed to get into contact
with a subject.
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-   Optionally you can enter the **Title** here
-   You can edit the **First name** and **Last name**
-   Define the **Gender** of the person
-   Fill in the **Date of birth**
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1.  If the person is an adult, select **Full of age** and continue with
    the following steps:
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    -   Define at least one of the following contact details: **Email**, **Phone
        number** and/or **Postal address**
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    -   You may want to add **Additional information** for postal address, such
        as c/o details
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    -   Specify the **Preferred contact method**
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2.  If the person is not of an adult age or has a guardian for example due to a
    disability or illness, select **Has legal guardian** > **Add guardian**
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    -   A new window will open
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    -   Fill in the first and last name of the subject's legal guardian >
        **Submit**
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    -   If a **Match** is found, select it
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    -   If **No matches found** applies, click **Create** > Enter necessary
        information in the fields provided > **Create new subject**
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    .. note::
        The legal guardian is now added. You can also create several guardians.
        By clicking on **Remove** next to the guardian's name, you can delete
        them as the guardian of the subject.
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.. _subject-attributes-tab:
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Attributes Tab
--------------
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The attributes tab lists all attributes and interests in study types. As rule
of thumb you could think of attributes as features that are used to decide on
suitability for a study. It is expected that they only provide *indications* on
suitability as there are usually additional criteria that need to be checked
for a study match.
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-   Fill in the attribute fields used at your institute
-   If the person **Does not want to participate in the following study types**,
    select one or more
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.. admonition:: Example
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    Attributes may be **Mother Tongue**, **Highest Educational Degree**,
    **Age**, **Handedness** and so on.
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.. _subject-data-protection-tab:
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Data Protection Tab
-------------------
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At the data protection tab should be used for to document recruitment consent
and GDPR requests.
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-   redefine the **Privacy level**
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-   indicate whether the subject has consented to the recruitment (for details
    see :ref:`subject-consent`)
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-   initiate an **Export request**
-   specify whether the subject is **To be deleted**
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.. _subject-info-tab:
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Additional Info Tab
-------------------
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This tab mainly focusses on when to best reach out to subjects.
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-   define the **Availability** of the subject
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    .. admonition:: Example
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        The person can be reached by phone between 9 and 11 a.m. on tuesdays.
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        -   Click on **9** under **Tuesday**,
        -   Hold the Shift-button and
        -   Click on **11** under **Tuesday**
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    .. admonition:: Example
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        The person is abroad for 6 months.
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        -   Select **Not available until** today in 6 months
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-   define which **Data source** the data comes from

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.. _subject-participations-tab:
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Study Participations Tab
------------------------

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The participations tab is offering to check existing participation or add the
current subject to a study
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-   **Invited**: Lists the study participations of this subject
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-   **Matching Studies**: A list of currently active studies with matching
    filters is displayed. You can add the subject to one or more study
    recruitments.
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-   **Add to study**: Search for a study and add the subject
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    directly as *invited* to it.
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.. _subject-to-be-deleted:

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Mark a subject for deletion
===========================
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To satisfy GDPR requests for deletion of all data related to a subject, please
proceed as follows:
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1.  Click on **Subjects** on the front page

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2.  Enter the first name and surname of the subject to be deleted into the
    search field and click on **Submit**
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3.  Click on **Details** and then go to the **Data protection** tab
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4.  Select the checkbox **To be deleted**

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5.  Click on **Save**

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The subject is now cleared for deletion from the database and deletion of
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their associated data. The data protection coordinator will take care of final
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deletion.
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.. _subject-delete:

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Delete a subject
================
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You may want personal data and subjects to be completely deleted because of an
explicit request from the subject or simply because there no longer is a
sufficient legal basis to keep the data.
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.. note::

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    This is only available for users with permissions that are granted to staff
    members who are data protection coordinators or the like.
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    If deletion was requested by a subject you should follow your institutes 
    rules on verifying identity of requester.

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In order to delete the externally and internally stored data of a subject,
please proceed as follows:

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1.  In the subject details, go to the **Delete** tab
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2.  If you see a message saying **This subject cannot be deleted because there
    still is data about them in studies.**, proceed as follows:
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    -   Contact the responsible person for each study and ask them to delete
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        all collected data of the subject concerned. Identify the subject using
        the study pseudonym that is displayed.
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    -   Once the responsible contact person has conformed the deletion of all
        data, delete the participation record using the **Delete** button.
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3.  Once all participation have been deleted you will see a message saying
    **Are you sure you want to permanently delete this subject and all related
    data?** You can now click **Confirm** and the subject will be deleted.
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.. warning::
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    There may still be data stored in a backup. Please check with your local IT
    department to verify proper deletion.
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.. note::
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    Deleting a subject who has guardians will **not** automatically delete the
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    corresponding guardians. However, if there is no other reason to keep the
    guardians in Castellum, they will appear in the data protection dashboard.