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Informed consent

You are being invited to participate in a research study titled 'Future of Healthcare Narratives'. This study is being done by Renee Noortman from Eindhoven University of Technology.

The purpose of this research study is as follows:

This research explores future visions with the aim to write narratives about them, from different perspectives. To do so, we have developed stories for you to read and experience. Through the online interface, we would like to ask your opinion on the stories. The stories are interactive, and you will be asked to make choices about where the story goes next, as well as to respond to specific events that take place within the story. In your case, the stories that you are presented with are about a future healthcare system, from the perspective of patients, care providers and data scientists. The study will happen through this online platform, where you will read the stories, make choices and explain your thoughts about them. This is expected to last about 15 minutes. At the end of the narrative experience, you will be asked if we can approach you for future research in similar studies, and whether you would be available for a follow-up interview. Both are optional.

Please download and read the informed consent form carefully: Informed Consent

Any collected data will be used for research purposes only. If you give your consent, your data will be made available for future research, for example by sharing those data with fellow researchers or making anonymized/pseudonymized data available via a data archive or repository.

Your participation in this study is entirely voluntary and you can withdraw at any time. You are free to omit any question or action.

We believe there are no known risks associated with this research study; however, as with any online data processing the risk of a breach is always possible. To the best of our ability, we will ensure that your information in this study will remain confidential. We will minimize any risks by separating your personal information (such as name, email, gender and age) from study data, which is processed and stored anonymously. The data will be stored securely, there will be backups performed daily and we will inform you promptly in case of changes or a data breach.

Our purpose is to perform open science and we aim to share anonymised research datasets with other researchers in an open and FAIR format.

I understand and accept that a limited amount of my personally-identifiable information may be processed on Data Foundry for the purposes described in the project. This can involve information such as my name and email address that is used to contact me in the study and give me access on this platform. I also accept that data gathered from me may be used in future research and made available in anonymized form via the Datafoundry repository.

Data Foundry acts as a data processor for personally-identifiable data that the project owner and legal data controller chose to store in the platform. The project owner has stated that they are familiar with the definition of personally-identifiable information and how such information must be handled according to national and European data protection laws.

I have read and understood the above information. I agree to participate in this study. I also understand that I can opt-out (leave) the study at any time and without any negative implications. My personally-identifiable data will be discarded in this case.

This study was approved by the TU/e institutional review board, and you can find more information about this here.

or I decline

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Informed consent