subject-management.rst 12.2 KB
Newer Older
TiG's avatar
TiG committed
1
2
3
4
5
==================
Subject management
==================


Bengfort's avatar
Bengfort committed
6
7
8
9
10
.. _subject-search:

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

Bengfort's avatar
Bengfort committed
11
12
.. figure:: /_images/subject-search.png

Bengfort's avatar
Bengfort committed
13
14
1.  Click on **Subjects** on the front page

Hayat's avatar
Hayat committed
15
2.  Enter the first name and surname, the email address, or the phone number
Bengfort's avatar
Bengfort committed
16

17
18
19
    -   If you provide a second first name, you will only find the subject if
        that name was also entered in the contact data. So if you do not find a
        subject by full name, also try leaving out second names.
Bengfort's avatar
Bengfort committed
20
21
22
    -   Keep the order as indicated
    -   No comma needed

Hayat's avatar
Hayat committed
23
24
3.  Confirm by clicking **Submit**

Bengfort's avatar
Bengfort committed
25
4.  Under the **Matches** tab all matching subjects or their legal
TiG's avatar
TiG committed
26
    representatives are listed
Bengfort's avatar
Bengfort committed
27
28
29
30
31
32
33
34
35
36
37
38

    -   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
Bengfort's avatar
Bengfort committed
39

40
41
42
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).

Bengfort's avatar
Bengfort committed
43
    .. warning::
44
45
46
        Only ask for a second feature, do not disclose any information
        yourself. This is to avoid leaking personal information to imposters.

Bengfort's avatar
Bengfort committed
47

Bengfort's avatar
Bengfort committed
48
49
.. _subject-create:

Bengfort's avatar
Bengfort committed
50
51
Create a subject
================
Karolina Mader's avatar
Karolina Mader committed
52

Bengfort's avatar
Bengfort committed
53
54
Subject data is split up into subsets that include at least the following
information:
Karolina Mader's avatar
Karolina Mader committed
55

TiG's avatar
TiG committed
56
57
-   **First name** and **Last name**
-   **Gender**
Bengfort's avatar
Bengfort committed
58
-   **Date of birth**
Bengfort's avatar
Bengfort committed
59
-   Information on whether the person is **Full of age** or **has legal
Bengfort's avatar
Bengfort committed
60
61
    representative**. If the subject has a legal representative, you will need
    to **Add legal representative** (see instructions in
TiG's avatar
TiG committed
62
    :ref:`subject-contact-tab`)
Bengfort's avatar
Bengfort committed
63
-   **E-mail** address and/or **Phone number** and/or full postal address
TiG's avatar
TiG committed
64
    and/or contacting details of the legal representative
65
-   **Recruitment attributes**
TiG's avatar
TiG committed
66
67
68
69
70
-   **Interest in study types**
-   **Privacy level**
-   **Recruitment Consent** given
-   **GDPR requests**
-   **Study Participations**
Karolina Mader's avatar
Karolina Mader committed
71
72
73

In order to create a potential subject in Castellum, please proceed as follows:

Bengfort's avatar
Bengfort committed
74
1.  :ref:`subject-search`
Bengfort's avatar
Bengfort committed
75

Bengfort's avatar
Bengfort committed
76
77
78
79
80
    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.
Bengfort's avatar
Bengfort committed
81

Bengfort's avatar
Bengfort committed
82
83
84
    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.
Bengfort's avatar
Bengfort committed
85

Bengfort's avatar
Bengfort committed
86
2.  Define the **Privacy level**
Bengfort's avatar
Bengfort committed
87

TiG's avatar
TiG committed
88
    -   0 (regular) describes adults without extraordinary features
TiG's avatar
TiG committed
89
    -   1 (increased) indicates children or adults with a legal representative
Bengfort's avatar
Bengfort committed
90
91
    -   2 (high) represents adults (and their children/wards) who for example
        are public figures
Bengfort's avatar
Bengfort committed
92

Bengfort's avatar
Bengfort committed
93
3.  Click on **Create new subject**
Bengfort's avatar
Bengfort committed
94

Bengfort's avatar
Bengfort committed
95
.. warning::
TiG's avatar
TiG committed
96

Bengfort's avatar
Bengfort committed
97
98
99
100
    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
Bengfort's avatar
Bengfort committed
101
    is much more information you should enter (see :ref:`subject-edit`).
TiG's avatar
TiG committed
102

Bengfort's avatar
Bengfort committed
103
.. _subject-edit:
TiG's avatar
TiG committed
104
105
106
107

Edit Subject Data
=================

Bengfort's avatar
Bengfort committed
108
109
110
111
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.
TiG's avatar
TiG committed
112
113
114

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

TiG's avatar
TiG committed
115
.. _subject-overview-tab:
TiG's avatar
TiG committed
116
117
118
119

Overview Tab
------------

Bengfort's avatar
Bengfort committed
120
This tab gives you a quick overview of the subject data. Importantly, it offers
Bengfort's avatar
Bengfort committed
121
122
different :ref:`legal bases <legal-basis>` for storing the subject data in
Castellum. You can check, add or rather edit the basis that applies.
TiG's avatar
TiG committed
123

TiG's avatar
TiG committed
124
.. _subject-contact-tab:
Karolina Mader's avatar
Karolina Mader committed
125

TiG's avatar
TiG committed
126
127
Contact Tab
-----------
Karolina Mader's avatar
Karolina Mader committed
128

Bengfort's avatar
Bengfort committed
129
130
This tab allows you to set up common information needed to get into contact
with a subject.
Bengfort's avatar
Bengfort committed
131

TiG's avatar
TiG committed
132
133
134
135
-   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**
Bengfort's avatar
Bengfort committed
136

TiG's avatar
TiG committed
137
138
1.  If the person is an adult, select **Full of age** and continue with
    the following steps:
Bengfort's avatar
Bengfort committed
139

TiG's avatar
TiG committed
140
141
    -   Define at least one of the following contact details: **Email**, **Phone
        number** and/or **Postal address**
Bengfort's avatar
Bengfort committed
142
143
    -   You may want to add **Additional information** for postal address, such
        as c/o details
TiG's avatar
TiG committed
144
    -   Specify the **Preferred contact method**
Bengfort's avatar
Bengfort committed
145

Bengfort's avatar
Bengfort committed
146
2.  If the person is not of an adult age or has a legal representative for
TiG's avatar
TiG committed
147
148
    example due to a disability or illness, select **Has legal representative**
    > **Add legal representative**
Karolina Mader's avatar
Karolina Mader committed
149

TiG's avatar
TiG committed
150
    -   A new window will open
TiG's avatar
TiG committed
151
    -   Fill in the first and last name of the subject's legal representative >
Bengfort's avatar
Bengfort committed
152
        **Submit**
TiG's avatar
TiG committed
153
    -   If a **Match** is found, select it
Bengfort's avatar
Bengfort committed
154
155
    -   If **No matches found** applies, click **Create** > Enter necessary
        information in the fields provided > **Create new subject**
Karolina Mader's avatar
Karolina Mader committed
156

TiG's avatar
TiG committed
157
    .. note::
Bengfort's avatar
Bengfort committed
158
159
160
        The legal representative is now added. You can also create several
        legal representatives. By clicking on **Remove** next to the legal
        representative's name, you can delete them as the legal representative
TiG's avatar
TiG committed
161
        of the subject.
Bengfort's avatar
Bengfort committed
162

TiG's avatar
TiG committed
163
.. _subject-attributes-tab:
Bengfort's avatar
Bengfort committed
164

165
166
Recruitment Attributes Tab
--------------------------
Bengfort's avatar
Bengfort committed
167

168
169
170
171
172
The recruitment attributes tab lists all attributes and interests in study types.
Recruitment attributes are 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.
Bengfort's avatar
Bengfort committed
173

174
-   Fill in the recruitment attribute fields used at your institute
TiG's avatar
TiG committed
175
176
-   If the person **Does not want to participate in the following study types**,
    select one or more
Bengfort's avatar
Bengfort committed
177

TiG's avatar
TiG committed
178
.. admonition:: Example
Bengfort's avatar
Bengfort committed
179

180
    Recruitment attributes may be **Mother Tongue**, **Highest Educational Degree**,
Bengfort's avatar
Bengfort committed
181
    **Age**, **Handedness** and so on.
Karolina Mader's avatar
Karolina Mader committed
182

TiG's avatar
TiG committed
183
.. _subject-data-protection-tab:
Bengfort's avatar
Bengfort committed
184

TiG's avatar
TiG committed
185
186
Data Protection Tab
-------------------
Bengfort's avatar
Bengfort committed
187

Bengfort's avatar
Bengfort committed
188
189
At the data protection tab should be used for to document recruitment consent
and GDPR requests.
Bengfort's avatar
Bengfort committed
190

TiG's avatar
TiG committed
191
-   redefine the **Privacy level**
Bengfort's avatar
Bengfort committed
192
193
-   indicate whether the subject has consented to the recruitment (for details
    see :ref:`subject-consent`)
TiG's avatar
TiG committed
194
195
-   initiate an **Export request**
-   specify whether the subject is **To be deleted**
196

TiG's avatar
TiG committed
197
.. _subject-info-tab:
Bengfort's avatar
Bengfort committed
198

TiG's avatar
TiG committed
199
200
Additional Info Tab
-------------------
Bengfort's avatar
Bengfort committed
201

TiG's avatar
TiG committed
202
This tab mainly focusses on when to best reach out to subjects.
203

TiG's avatar
TiG committed
204
-   define the **Availability** of the subject
Bengfort's avatar
Bengfort committed
205

TiG's avatar
TiG committed
206
    .. admonition:: Example
Bengfort's avatar
Bengfort committed
207

TiG's avatar
TiG committed
208
        The person is abroad for 6 months.
Bengfort's avatar
Bengfort committed
209

Bengfort's avatar
Bengfort committed
210
        -   Select **Not available until** today in 6 months
TiG's avatar
TiG committed
211
212
213

-   define which **Data source** the data comes from

TiG's avatar
TiG committed
214
.. _subject-participations-tab:
TiG's avatar
TiG committed
215
216
217
218

Study Participations Tab
------------------------

Bengfort's avatar
Bengfort committed
219
220
The participations tab is offering to check existing participation or add the
current subject to a study
TiG's avatar
TiG committed
221

Bengfort's avatar
Bengfort committed
222
-   **Participating**: Lists the study participations of this subject
Bengfort's avatar
Bengfort committed
223
224
225
-   **Matching Studies**: A list of currently active studies with matching
    filters is displayed. You can add the subject to one or more study
    recruitments.
Bengfort's avatar
Bengfort committed
226
-   **Add to study**: Search for a study and add the subject
Bengfort's avatar
Bengfort committed
227
    directly as *participating* to it.
TiG's avatar
TiG committed
228

Bengfort's avatar
Bengfort committed
229
230
.. _subject-to-be-deleted:

231
232
Mark a subject for deletion
===========================
Bengfort's avatar
Bengfort committed
233

Bengfort's avatar
Bengfort committed
234
235
To satisfy GDPR requests for deletion of all data related to a subject, please
proceed as follows:
Bengfort's avatar
Bengfort committed
236
237
238

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

239
240
2.  Enter the first name and surname of the subject to be deleted into the
    search field and click on **Submit**
Bengfort's avatar
Bengfort committed
241

Bengfort's avatar
Bengfort committed
242
3.  Click on **Details** and then go to the **Data protection** tab
Bengfort's avatar
Bengfort committed
243
244
245

4.  Select the checkbox **To be deleted**

Bengfort's avatar
Bengfort committed
246
247
5.  Click on **Save**

248
The subject is now cleared for deletion from the database and deletion of
249
their associated data. The data protection coordinator will take care of final
TiG's avatar
TiG committed
250
deletion.
Bengfort's avatar
Bengfort committed
251
252
253
254


.. _subject-delete:

Bengfort's avatar
Bengfort committed
255
256
Delete a subject
================
Bengfort's avatar
Bengfort committed
257

Bengfort's avatar
Bengfort committed
258
259
260
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.
Bengfort's avatar
Bengfort committed
261

TiG's avatar
TiG committed
262
263
.. note::

Bengfort's avatar
Bengfort committed
264
265
    This is only available for users with permissions that are granted to staff
    members who are data protection coordinators or the like.
TiG's avatar
TiG committed
266

Bengfort's avatar
typos    
Bengfort committed
267
    If deletion was requested by a subject you should follow your institute's
TiG's avatar
TiG committed
268
269
    rules on verifying identity of requester.

Bengfort's avatar
Bengfort committed
270
271
272
In order to delete the externally and internally stored data of a subject,
please proceed as follows:

Bengfort's avatar
Bengfort committed
273
1.  In the subject details, go to the **Delete** tab
Bengfort's avatar
Bengfort committed
274

Bengfort's avatar
Bengfort committed
275
276
2.  If you see a message saying **This subject cannot be deleted because there
    still is data about them in studies.**, proceed as follows:
Bengfort's avatar
Bengfort committed
277

Bengfort's avatar
Bengfort committed
278
    -   Contact the responsible person for each study and ask them to delete
Bengfort's avatar
Bengfort committed
279
280
        all collected data of the subject concerned. Identify the subject using
        the study pseudonym that is displayed.
Bengfort's avatar
Bengfort committed
281
    -   Once the responsible contact person has confirmed the deletion of all
Bengfort's avatar
Bengfort committed
282
        data, delete the participation record using the **Delete** button.
Bengfort's avatar
Bengfort committed
283

Bengfort's avatar
Bengfort committed
284
285
286
287
288
289
290
291
3.  If you see a message saying **This subject may still have data in general
    domains.**, proceed as follows:

    -   Click on **Pseudonyms** next to **General pseudonym domains** to get a
        list of pseudonyms.
    -   Contact the responsible person for each general domain and make sure
        that all data is deleted.

Bengfort's avatar
typos    
Bengfort committed
292
4.  Once all participations have been deleted you will see a message saying
Bengfort's avatar
Bengfort committed
293
294
    **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.
Bengfort's avatar
Bengfort committed
295

Bengfort's avatar
Bengfort committed
296
.. warning::
Bengfort's avatar
Bengfort committed
297

Bengfort's avatar
Bengfort committed
298
299
    There may still be data stored in a backup. Please check with your local IT
    department to verify proper deletion.
300

Bengfort's avatar
Bengfort committed
301
.. note::
302

Bengfort's avatar
Bengfort committed
303
304
305
    Deleting a subject who has legal representatives will **not** automatically
    delete the corresponding legal representatives. However, if there is no
    other reason to keep the legal representatives in Castellum, they will
Bengfort's avatar
Bengfort committed
306
    appear in the :ref:`data protection dashboard <data-protection-dashboard>`.
Hayat's avatar
Hayat committed
307
308
309
310
311
312
313
314
315
316
317
318
319
320
321
322
323
324
325
326
327
328
329
330
331
332


.. _subject-add-to-study:

Add a subject to a study
========================

.. NOTE::

    Please note that these are instructions on how to add a specific subject to a study.
    If you have a study and are looking for subjects, please use the recruitment process
    (:ref:`recruitment`)

There are two similar but different ways to add a subject to a study.


To add a subject to an active study whose filters match the attributes of the subject,
proceed as follows:

1.  In the subject details, go to the **Study participations** tab

2.  Clicking on **Matching studies** will show a list of studies whose filters match on
    this subject's attributes.

3.  Clicking on the button named **Contact** will take you to this subject's contact page
    in the recruitment for the selected study.
Hayat's avatar
Hayat committed
333
334
    For further information on how to proceed from there, please see the please see the
    :ref:`recruitment guide <recruitment>` (starting with point 4).
Hayat's avatar
Hayat committed
335
336
337
338
339
340
341
342


To add a subject to any study, proceed as follows:

1.  In the subject details, go to the **Study participations** tab

2.  Under **Add to study**, enter the name of the study you want to add the subject to.

343
344
3.  Clicking on the button named **Add to study** will set this subject as participating
    in the study.
Hayat's avatar
Hayat committed
345
346
347
348

.. NOTE::

    Please note that this search doesn't differentiate between active and finished studies.
349
350
    Matching filters are not checked either. This feature is intended to support migrating
    from other tools that previously tracked study participations.