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WerteRadar - Donating health data with sovereignty

Principal Investigator:
Research Team:
Funding:

Federal Ministry of Education and Research (BMBF) [grant 16SV8463]

Term:
Jul 01, 2020 — Jun 30, 2023
Contact Person:
Prof. Dr. Claudia Müller-Birn
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Project partners

Project partners

The administrative admission of patients in a clinical context often takes place under great time pressure. In such a situation, patients are not sufficiently informed about the consequences of their data transfer and are therefore not able to make informed and reflected decisions. This situation serves as a starting point for redesigning an informed decision process for patients by considering the available data privacy.

In the interdisciplinary collaboration of computer science, media pedagogy, and medicine, the process of data donation is reconceptualized in the context of individualized medicine. For this purpose, we distinguish between a receptive data competence, which can be predominantly technically promoted, and a sovereign reception competence, according to which patients are enabled to make sovereign decisions about the donation of their data. This refers not only to the ability to make individual decisions about the donation of one's own data, but also to the social situation of data donation. For empowerment, a web-based interactive recommendation system is to be designed and practically implemented, which breaks down the conventional process of data donation into the steps: reflection, exploration, interpretation. With the help of this three-step interaction design, patients can self-determine their data donation according to their value standards, make an informed decision, and reflect on their values regarding data sharing. The overarching goal of the interdisciplinary project is to redesign the sharing of personal health data by capturing and evaluating existing stakeholder values, based on the Value Sensitive Design method. The aim is to enable patients to share their data in a self-determined and reflective way, taking into account aspects of data privacy.

The collaborative partners share a research and knowledge interest in the theoretical question of the design of ethical-reflexive and technical sovereignty in the transmission of personal health data.

Partners

Scientific network partners

Application-oriented network partners

Associated partners

Keywords

  • Data Privacy
  • Data Transfer
  • Recommendation System
  • Reflective Technologies
  • Value-sensitive Design