Information about participating in the DAKI Health study 

Dear prospective study participant,

We hereby invite you to participate in the scientific DAKI Health study. The study is part of the research project DAKI-FWS and helps to detect pandemic outbreaks and climate events at an early stage. Individuals 18 years of age and older can participate in the study.
As part of the DAKI Health study, Data4Life collects health data from the German population on symptoms, risk contacts, and coronavirus tests over a period of 2 years. The study at Data4Life is scientifically led by PD Dr. med. Cornelius Remschmidt.

Funded by the German Federal Ministry of Economics and Climate Protection (Bundesministerium für Wirtschaft und Klimaschutz, BMWK), DAKI-FWS will build an early warning system based on multiple data sources and artificial intelligence to derive actions for the health of the population and for entrepreneurial action in Germany.

Together with Data4Life, organizations from the fields of research, medicine, public health, and climate are working together in the DAKI-FWS project:

- Fraunhofer HHI (consortium leadership)
- Budelmann Elektronik GmbH
- Charité – Universitätsmedizin Berlin
- Hasso-Plattner-Institut
- Justus-Liebig-Universität Gießen
- Logiball GmbH
- NET CHECK GmbH
- Robert Koch Institute
- Zuse Institut Berlin

Voluntary participation

Your participation is voluntary. Only if you explicitly agree, your information can be included in the study. If you don’t want to participate, there will be no disadvantage to you personally. You have the right to revoke the consent you’ve given to participate in the study and to have your data processed. You can stop participating in the study at any time.

Purpose of the DAKI Health study

The DAKI-FWS project aims to strengthen the resilience of the German economy in future crisis situations by using new digital technologies.

DAKI-FWS combines multiple data sources and artificial intelligence to develop new models and methods for bundling all insights and forecasts into an early warning system. The early warning system will be modular so that additional data sources can be integrated and applied to other crisis situations.

Within the DAKI-FWS project, university and non-university research institutions are working together with companies to develop a generic model including a data and analysis platform.

A model is being developed to detect pandemic outbreaks and climate extremes such as floods or heat waves at an early stage and to more accurately predict their course. Another focus is on concrete warnings for entrepreneurial action. The project’s consortium aims to demonstrate the impact and usability for specific industries and entrepreneurial value chains.

Data4Life contributes to the DAKI-FWS project with the DAKI Health study and the health data collected as part of the study. Germany already has, for example, data officially reported in accordance with the German Infection Protection Act that reflects health data of the German population. But at the latest since the beginning of the COVID-19 pandemic, it’s become clear that data from nonclinical sources is also of great importance to make reliable statements about individual persons or age groups and the spread of diseases.

By participating, you can help the scientific community contribute findings to these unanswered questions. The more participants we can recruit for the study from different age groups and person groups, the more meaningful the study results will be.


Procedure and duration of participation

To participate in the DAKI Health study, you must register at Data4Life and electronically give your consent to participate. You’ll then be asked to first complete a general questionnaire about your age, housing situation, chronic pre-existing conditions, or previous vaccinations directly in the Data4Life study app. If you don’t want to answer individual questions: no problem. You only give the answers you want to give.

In addition, you’ll be asked to answer a weekly questionnaire about your current symptoms of cold or illness and the result of a potential coronavirus test. This is also done in the study app and takes less than 5 minutes. To ensure that you don’t forget any of the questionnaires, we’ll send you reminders by email each time a new questionnaire is available.

The health data collected in the DAKI Health study will be combined in pseudonymized form with data from the other consortium partners such as the Robert Koch Institute and Charité – Universitätsmedizin Berlin to develop artificial intelligence models. For the successful construction and training of such artificial intelligence models, many data points and a longer observation period is necessary. The study is therefore planned for a period of 24 months. The longer you stay involved and support the study, the more meaningful the results of the analyses will be.


Related risks

There aren’t any health risks associated with participating in the DAKI Health study. Please note that the study doesn’t provide medical recommendations or help in the diagnosis or treatment of diseases such as COVID-19.


Circumstances that may lead to ending the study participation

You have the right to withdraw the consent you’ve given to participate in the study or to continue processing your data, and to terminate your participation in the study at any time. The study physician has the right to withdraw study participants from the study for safety reasons or if there are indications of suspected manipulation.


Possible benefits for study participants or for the general public

Usually, you can’t expect any direct personal benefit or advantage for your health from the scientific use of your data. For the general public, the results of the study will help to detect pandemics at an early stage and to improve our understanding of how they spread.


Data privacy

Answers from the study questionnaires are stored in your Data4Life user account using end-to-end encryption. End-to-end encryption is an encryption method that guarantees that only you can see the answers you provide. Your answers are encrypted directly on your end device (for example, mobile phone or computer), sent to Data4Life, and saved in your user account. You have the possibility to view your end-to-end encrypted answers. For this purpose, your answers are downloaded from your user account to your end device and decrypted on the device. The necessary cryptographic key is stored only locally on your device and is not transmitted to Data4Life. This way, Data4Life can guarantee that only you can link your answers to your user account.

To use your study questionnaire answers in research, your data is transferred to the DAKI-FWS platform using pseudonymization. The DAKI-FWS platform is used to store all data relevant to the DAKI-FWS project. Pseudonymization is a method of altering data, for example, by replacing your name with a unique random number, so that it cannot be linked to you without the use of additional information. Your data is pseudonymized directly on your end device by combining your answers with a pseudonym that’s created on your end device. This combination is securely transmitted to the DAKI-FWS platform. The pseudonym doesn’t contain any personal data of the study participants, but consists of a randomly generated code. Additionally, your pseudonym is end-to-end encrypted on your end device and stored in your user account. Only you have the possibility to link the pseudonym to your answers from the study.

More info about how we use your data and about our data privacy concept: data privacy


Insurance coverage

Specific insurance coverage for study participants has not been obtained.


Your right to ask questions

For questions specifically related to the conduct of the DAKI Health study, you may contact us at any time using the contact options listed in our imprint (for example, by emailing we@data4life.help). Please note that we generally can’t answer medical questions (for example, regarding coronavirus infections).


Expenses

In the context of the DAKI Health study, no expense allowance will be paid to participants. We’re therefore all the more pleased about your participation.