Data management and privacy

Additional information around data management and privacy

Meaningful Mobility project
This information has been drawn up for research participants in the Meaningful Mobility project. The information presented here, contains more detailed and technical information than the pamphlet and information letter that you have received.

Access to your data for verification
To ensure whether the study has been carried out in good and reliable manner, some experts may request access to your pseudonymised data at the research location. The experts with this level of access include those verifying: 1) the project, for the European Research Council as the funding agency of the study; and 2) the academic quality of the study, for instance commissioned by academic journals in which the findings will be published. In such cases, your rights and privacy will be carefully taken into account.

How we manage your data and secure your privacy
Contact information
Your contact information (name, address, telephone number, email and year of birth), and other data that can be used to identify you, will be left out of all data shared outside the research team. To guarantee that we use a coding system. As soon you will start to participate in the project we will assign you a code. The link between the code and your personal data will only be visible to the researchers who are involved in the collection of data. This link will be encrypted and stored securely in the local research institute. All the other researchers will not have access to your contact information but only to your code number.

Survey
The data from the survey contains information about your background and your experienced health and well-being. These data are collected from the surveys that you fill out during the first visit. The survey-data will be connected to the other data through the unique code (pseudonym) that is assigned to your data.

Interview
The data from the in-depth interview, and, if applicable, walking interview, include information about your daily experiences of your indoor and outdoor movement. The interviews are recorded on a voicerecorder and afterwards transcribed by an external agency. The transcriber will get access to the interviews using the computer facilities of the University of Groningen. In this way, your interviews will not be transferred outside the working environment of the university. Moreover, the agency will have to confirm that they will handle the data confidentially. The first transcripts are without your name but may contain other identifying information. Identifying information (e.g., other people’s names, alias, and residencies) will then be further removed from the transcripts by the research team. The audio files will be password-protected, and accessible only to the research team.

GPS tracker and step counter
The data from the GPS tracker ( QStarz BT-Q1000XT) and step counter (Fitbit Inspire pedometer) contain information about your activity, the routes you take and the locations you visit, which is necessary for the study. The data that are collected with the GPS-tracker are difficult to anonymize. However, the data will be locked and stored securely on a virtual environment and the data will only be accessible to the research team.
You may lose the pedometer or GPS tracker. In such cases, we will not charge you with the costs in any way. You may be concerned about your privacy, should you lose one of the devices. The pedometer data cannot be traced back to you as a person, as it only includes step data.
The GPS-data can be traced back to a person. However, the data are not taken off the tracker easily: considerable effort is required. That means that your data are safe. We can explain you the process of taking data from the tracker. If you are interested, please contact the research team.

Activity diary
You fill out the activity diary, either on paper or digitally. The data are digitalized as soon as possible (if required) and then pseudonimized. The digitalized data will be cross-checked, and then the original paper diaries will be destroyed.

If applicable: biosensing wristband
The data from the biosensing wristband (Empatica e4) contain information about your physiological responses, including heartrate, electrodermal activity, skin temperature, and blood volume pulse. The wristband also measures your activity (steps). These data will temporary be stored on the Empatica secure servers before they are transferred to the University of Groningen servers. The Empatica servers are fully compliant with GDPR and offer a ‘gold standard’ security management and additional information can be found on their website: https://support.empatica.com/hc/en-us/articles/202524239-What-does-Empatica-do-to-protect-end-user-privacy- .

If applicable: short surveys
The data from the short surveys you answer through SMS or over the phone contain information about your experienced mobility and well-being at that time. These data will be connected to the other data through the pseudonym that is assigned to your data.