Guest post: REBECCA mobile application, a central RWD collection tool
The mobile app is a central Real-World Data collection tool of the REBECCA. The patient mobile application currently features the self-reported data function and continuous location monitoring function. The self-reported data feature has two functionalities: annotated photographs and questionnaires.
The annotated photographs help gain a better understanding of a patient’s eating habits and can be used to create a patient’s meal and drink diary. This functionality also provides an insight into the environmental stressors that the patient might feel such as transportation problems, pollution, walkability problems, reduced safety, weather and similar. The photographs are geotagged painting the picture of the patient’s immediate environment. This contributes to understanding the impact of the environment on a patient’s behaviour.
The questionnaire functionality offers patients a suite of questions to choose from and can be triggered at the patient’s convenience. Patients who for some reason do not engage with the questionnaire can be reminded to do so via notifications. The frequency and the type of questions used in the questionnaire are defined in the study protocols.
The patient mobile application also features a functionality allowing for the continuous monitoring of patient location, which operates unobtrusively and objectively in the background. The patient can enable continuous location monitoring at their convenience. The goal of this functionality is not to see the actual location of the patient but to create privacy-preserving indicators associated with the patient’s functional status. This is done in three steps.
The first step is identifying the personal points of interest of the patient, such as home, work, public parks, recreational facilities and similar. After having identified the personal points of interest, a timeline can be created showcasing how the patient moves in their local environment. Lastly, privacy-preserving indicators are calculated. They help understand the patient’s functional status. What is important is not the actual indicator but the evolution of indicators in time. Such evolution, that is, a change in points of interest and timeline associated with it would indicate functional or emotional problems of the patient.
REBECCA app versions
REBECCA app is still under development and the next version of the REBECCA app will feature integration with a smartwatch device that will enhance the available data sources and provide more insights into the physical activity, sleep and eating behaviours of the participating patients.
The REBECCA app is available for iOS (version 14 and later) and Android devices (version 8 and later). Extensive testing with a wide range of smartphone manufacturers ensures that the REBECCA app will provide a robust performance covering the majority of currently used devices, including older smartphones.
Data protection and privacy
The project follows a privacy-by-design approach, in compliance with the GDPR legal framework, and ensures that the patient’s privacy is protected during the data collection, storage, processing and accessing. First, the collected data are transmitted over secure, encrypted connections to the REBECCA servers located in Germany where they are stored following strict information security requirements. Data are never shared with third parties and the data collection is under the control and supervision of the REBECCA consortium.
Furthermore, all data are pseudonymised which means that directly identifiable information is not collected by the app. The collected data are then processed in the same servers to extract higher-level information about the participant. This step also ensures that any data that convey identifiable information is removed. For example, location data are processed to extract indicators for the mobility of the participant patient, whereas the actual location information is never used in the subsequent analysis and is never shown to the medical doctor or the clinical researcher.
REBECCA has received ethical approvals from ethical committees in the three participating countries (Sweden, Norway, and Spain), which also define the data retention periods. In compliance with GDPR, the participant patients have full control over their collected data.
This blog post was developed by Dr Ioannis Sarafis, a postdoctoral researcher at the Aristotle University of Thessaloniki, the REBECCA project leader.