Project Partner: Scottish Collaboration for Public Health Research and Policy (SCPHRP), University of Edinburgh
5 Forrest Hill, EH1 2QL, UK
Date: 20th of March 2020
What is the purpose of this project?
There is a need to understand the social impact of COVID-19 on citizens and to hear their stories. You can take part in this citizen science research project because you are, like us, a person experiencing the societal effects of COVID-19. The purpose of this project is to learn more about how the COVID-19 pandemic is affecting people’s ways of life including short and long-term physical and social well-being. It is called a “citizen” science project because by using the app you contribute data to this project. The procedure of participation is easy: by simply creating new entries about your observations, surroundings and your emotions in the current situation, you contribute to the project. While doing so, you can also answer short sets of social science-related questions and share your story. All questions are optional and you can freely choose what you want to contribute and when.
What are the risks and benefits of participation?
There are no known risks associated with participating in this project. You can always make a voluntary decision regarding your participation. This project will help us understand the social impact of COVID-19 and ways to support citizens, and the information from this project may help to enhance or inform future social-related interventions that may bring positive impacts. Your personal benefit may be an increased sense of awareness, by contributing to a wider purpose in fighting the COVID-19 crisis you are helping to make a beneficial effect for society and for your own local community.
How is my data handled and used?
You have complete control over how much information you choose to share, and of what kind. All personal data is always transferred via SSL/TLS encryption and stored securely with industry standards on the AWS cloud (European servers). As part of downloading and using the app, you are consenting to your anonymized contributions being used for research. Approved University research partners will be analyzing data in the aggregate which will be analyzed for research and teaching only. At the point of export, the data are made anonymous by deleting the User ID. These aggregate data are then securely stored on encrypted servers. Only the investigators responsible for this study and the researchers supporting data analysis will have access to this information. Confidentiality will be maintained by using only study identification numbers and aliases (instead of people’s real personal data) in the database. The data collected from this project may be combined and published in aggregate, with data from past and future studies conducted by the research team. No individual-level data will ever be reported by the research team. Any future use of the data is required to undergo review by a Research Ethics Board. Findings may be shared via conference presentations, on the project’s website, media reports and/or academic publications.
Withdrawal of your data: You can always delete all your personal data processed in the project by simply deleting your account in settings. Your personal data will consequently be deleted in the project's research database at the next data update automatically. We will not store any additional information about yourself if you prefer to delete your account and we will not be able to restore your personal data again. With your withdrawal, all your account information will be deleted permanently.
How long will my participation last?
This overall project is ongoing in the current situation, you can freely choose how long you want to contribute or participate. You can end your participation at any time simply by deleting your account in the app’s settings panel. You may be asked to participate in additional studies at a future date through the app.