**1 Initial DMP**

#  1.1 Data set description

To reach our objective of designing, implementing and evaluating the PAL
system with stakeholders involved in each phase, we will apply different
research methods. The user and functional requirements are derived in a
continuous process during the project in which we apply co-design/co-creation
techniques during interactions with the stakeholders (formal and informal
caregivers and children). Structured interviews, focus groups, observational
studies and questionnaires will be used to derive user and functional
requirements. Furthermore by doing fast prototyping stakeholders can provide
their input on concrete aspects of the system to improve implementation.
Finally during more formal evaluations we will make use of questionnaires,
logging and observational data which is analyzed both statistically and more
ethnographically (e.g. grounded theory) to evaluate the system and provide
refined user requirements.

Below we provide a table (see Table 1) in which all data is structured: the
”what” column tells the kind of data collected, the ”data storage” column
describes what type is stored and the ”form” column describes how it is
stored. Not all data will always be analyzed to result in all suggested data
forms. At this moment we have little information on which datasets we are
going to link with each other to provide other relevant metadata sets. This
will be further addressed in the next version of the DMP.

Data gathered within the FP7 project ALIZ-e will be used as starting point and
new information will be integrated.  
  
<table>  
<tr>  
<th>

What

</th>  
<th>

Data storage

</th>  
<th>

Form

</th> </tr>  
<tr>  
<td>

Consent forms (Parents/custodian, children w and w/o T1DM, formal

caregivers, teachers)

</td>  
<td>

paper, scanned

</td>  
<td>

PDF

</td> </tr>  
<tr>  
<td>

Participant data (gender, age, years T1DM, robot experience, ehealth
experience, type of diabetes therapy

\- insulin pump, multi-injective)

</td>  
<td>

Paper/(excel) table

</td>  
<td>

xlsx/csv

</td> </tr>  
<tr>  
<td>

Requirement elicitation with Structured interviews

</td>  
<td>

Video/Audio Record-

ings

</td>  
<td>

docx/pdf, mp4/mov/mpg/wmv, mp3/wav

</td> </tr>  
<tr>  
<td>

Requirement elicitation with Focus groups

</td>  
<td>

Video/Audio Recordings, observation notes, output (e.g. drawings)

</td>  
<td>

Mind maps, docx/pdf, mp4/mov/mpg/wmv, mp3/wav

</td> </tr>  
<tr>  
<td>

Requirement elicitation with Observational studies

</td>  
<td>

(Video/Audio Recordings), observation notes

</td>  
<td>

Observer forms with recurring aspects (docx, xlsx), mp4/mov/mpg/wmv, mp3/wav,
docx/pdf

</td> </tr>  
<tr>  
<td>

Questionnaires on user requirements

</td>  
<td>

Paper/computer

</td>  
<td>

docx/xlsx/csv

</td> </tr>  
<tr>  
<td>

Performance data

</td>  
<td>

logging

</td>  
<td>

xlsx/csv

</td> </tr>  
<tr>  
<td>

Adherence

</td>  
<td>

logging, data input

</td>  
<td>

xlsx/csv, docx/pdf

</td> </tr>  
<tr>  
<td>

Emotional state

</td>  
<td>

data logging, questionnaires, photos (selfies), observation notes, dialogue
data

(speech/text), video

</td>  
<td>

xlsx/csv, jpg/png, mp4/mov/mpg/wmv, mp3/wav, docx/pdf

</td> </tr>  
<tr>  
<td>

PAL experience (child, formal and informal caregivers)

</td>  
<td>

questionnaires, observations notes

</td>  
<td>

xlsx/csv, docx/pdf

</td> </tr>  
<tr>  
<td>

autonomy/relatedness/competence feelings

</td>  
<td>

questionnaires, observations notes, dialogue data (speech/text)

</td>  
<td>

docx/xlsx/csv,

mp4/mov/mpg/wmv, mp3/wav, docx/pdf

</td> </tr>  
<tr>  
<td>

Glucose values, nutritional and

lifestyle habits

</td>  
<td>

logging, explicit input user

</td>  
<td>

xlsx/csv, database

</td> </tr>  
<tr>  
<td>

What

</td>  
<td>

Data storage

</td>  
<td>

Form

</td>  
<td>

</td> </tr>  
<tr>  
<td>

parent/custodian questionnaires on parenting capacities that influence disease
management (pre/post, compared to parents of healthy children) - e.g parental
overprotection, perceived child vulnerability, parenting stress

</td>  
<td>

questionnaires

</td>  
<td>

docs/xlsx/csv

</td>  
<td>

</td> </tr>  
<tr>  
<td>

parent/custodian and/or teacher questionnaires (atti-

tude/knowledge/trust/skills/shared responsibility)

</td>  
<td>

questionnaires

</td>  
<td>

docx/xlsx/csv

</td>  
<td>

</td> </tr>  
<tr>  
<td>

Professional care- questionnaires giver questionnaires

(Trust/acceptance/awareness/tailoring/

PAL experience/effect on child)

</td>  
<td>

docx/xlsx/csv

</td>  
<td>

</td> </tr>  
<tr>  
<td>

User, functional and design require- Derived from all data ments

</td>  
<td>

sCET database, word or excel

</td>  
<td>

xml,

</td> </tr> </table>

Table 1: Data structure

#  1.2 Standards and metadata

For transcription we will use word (.docx) or special transcription software
(to be decided on). For mind maps we will use powerpoint (.pptx). Data will be
represented in Excel (.xlsx or .csv), data analysis output will be in SPSS,
PRISM or R for quantitative analysis and with atlas.ti or word for more
qualitative observation analysis. Recordings are saved in mp3 (audio), mp4
(video) or another widespread format.

Use cases, requirements and claims are stored in the situated Cognitive
Engineering format (online) which will be exported to doc, html or xml. All
data will be supported by an ontology in RDF format.

All data will be collected in folders using the following format YEAR MM
partnerAcronym location experiment. The DMP is further supported by an
experimentation report template in docx format with information about the
experiment performed (main researcher, goal, lessons learned, time of
execution, partners involved, methodology summary, overview of data outcomes
(references to data storage), conclusions and references to publications.

#  1.3 Data sharing

Most data will be anonymous and therefore free accessible for the scientific
community, recordings of voice and face are ethically a different issue as
might be the case with medical data, some dialogues and connections between
data sets (e.g. glucose values and diary input). The data that is provided,
disclosed or otherwise made free accessible shall not include personal data as
defined by Article 2, Section (a) of the Data Protection Directive
(95/46/EEC).

Particular attention will be taken for video and some of the other data. In
this case we will take all necessary steps in order to ensure that the data
and video will be accessible only after the signature of a specific written
agreement that imposes that the same data and video will not be shared. The
modalities and possibilities to sharing data and video will depend on the
written informed consent given by caretakers and children and by the ethical
committees of the partners involved. For sharing data and video between
partners we have a specific Material Transfer Agreement (MTA), which can also
be used outside the project if we want to share outside of the consortium. In
this specific case the MTA will be modified considering that the recipient
parties arent partners of the consortium.

As far as possible and useful for the community we will put the data on the
OpenAire supported Zenodo repository (https://zenodo.org/).

#  1.4 Archiving and preservation (including storage and backup)

All data is preserved either in the Zenodo repository, the project SVN at TNO
or for more sensitive data at the specific partners locations (e.g. the
medical data connected to the user). In particular, data collected during the
field experiments with the stakeholders will be stored and preserved in each
of the leading country partners: Netherlands and Italy.

This data will be preserved according to the rules of research data, which is
at least 5 years after the project.