Privacy policy of the Mobistudy participants app

Version 2024-05-24

The Mobistudy platform is meant to be used by citizens who want to contribute to research studies using their mobile phones. The platform is managed by Malmö University, in Sweden.

To use the app, you will need to create an account on the Mobistudy platform, which will be shared with Malmö University. This profile is needed regardless of whether you join a research study or not. The profile requires the following information:

• Your email address. This is needed to identify you, allow you to login, and to recover your password.
• Your name and surname. These are needed to personalise messages sent to you or in those studies where it is necessary to identify each participant.
• Your date of birth. This is needed to match your profile with the inclusion criteria of available studies.
• Your sex. This is also needed to match your profile with the inclusion criteria of available studies.
• Any long-term health conditions you might have, like asthma or diabetes. This is needed to match your profile with the inclusion criteria of available studies.
• Any medication that you take regularly, for example insulin. This is needed to match your profile with the inclusion criteria of available studies.
• Your height and weight. These are needed to match inclusion criteria and to configure some of the activities you can perform using the app.

In addition to the data contained in this profile, the app will collect and share information about your participation in research studies with Malmö University, like the date and time you joined or withdrew from a study, or the date and time of the activities you performed within a study. These are needed to keep track of your participation in existing studies and avoid inviting you to studies you have already taken part in, or studies that are not suitable to be part of simultaneously.

If you decide to join a research study, you may be required to share your data with the institutions involved in the study, including:

• Answers given to forms and questionnaires.
• Data collected from Google HealthConnect (Android phones), or HealthKit (iPhones). Only the data of relevance to each study will be collected. These may include your weight, height, steps count, heart rate, distance, activity, sleep, or nutrition.
• Heart rate, steps and acceleration collected during a Queens College Step Test.
• Geographical position, distance, steps and acceleration during the 6-minute Walk Test.
• Heart rate, activity level, steps and activity type collected by the MiBand3 fitness tracker.
• Blood oxygen saturation and heart rate measured by a pulseoximeter.
• Peak expiratory flow measured by the smart peak flow meter.
• Geographical position collected for the positioning task.
• The time you tap on the screen during the finger tapping task.
• The acceleration and orientation of your phone during the timed-up-and-go test.
• The acceleration and orientation of your phone during the hold-the-phone test.
• The strokes you make on the screen during the drawing test.
• Your voice during the vocalization test.

The purpose and extent of data collection within each study will depend on the study itself. A further study-specific privacy policy will be clearly shown to you before joining the study and you will be allowed to accept it or reject it.

All the collected data are securely transferred and stored on a server hosted and managed by Malmö University, Sweden. Data is encrypted on both the app and the server and during transmission. Personnel from Malmö University may access the server and your data for technical maintenance, but will not process any of these data for clinical or research purposes, unless they are collected within the context of the research studies you have decided to participate in. Malmö University may publish general statistics about the number of users registered on the platform, their country of residence and age group.

Under no circumstances other than the ones specified above, will your data be shared with other parties or individuals.

Your data are kept on the server for as long as you decide to keep your profile on Mobistudy. Study-specific data will be kept for the duration of study, which is going to be specified when you join a study. The app allows you to delete your account and any data associated with it at any time, by tapping a button, however, some data may be retained because it may be legally or practically impossible to delete them.

The server will also record technical logs containing the date and time you send or request data and the IP address from which the data comes from, but not the data associated with the request. These technical logs are needed for security audit and will be kept for 1 year in all circumstances, also if you decide to delete your account.

You can download the data in a machine-readable format. Contact mobistudy@mau.se if you need to do this.

Malmö University is the Controller of the processing of personal information which is done based on your consent. The consent can be revoked at any time by contacting mobistudy@mau.se and any material processed based on your previous consent will be erased. The same address applies if you would like to find out what has been registered about you or if you would like to have errors corrected, information erased or processing restricted. Be aware that different conditions may apply for data collected within a research study, according to the privacy policy of the study.

If you have questions about the university’s processing of personal information you may contact the Data Protection Officer at dataskyddsombud@mau.se and if you have complaints that cannot be resolved with Malmö university you may submit these to Integritetsskyddsmyndigheten.