Forum Privatheit 2022: Talk by Prof. Dr. Claudia Müller-Birn
Value Sensitive Design as an Approach for Individual and Collective Self-Determination
At the Forum Privatheit 2022 annual conference, which took place on October 13-14 in Berlin, Prof. Dr. Claudia Müller-Birn gave the talk: "Value Sensitive Design as an Approach for Individual and Collective Self-Determination".
The Forum Privatheit is dedicated to stimulating public discourse on privacy and data protection and is funded by the German Federal Ministry of Education and Research (BMBF). Since 2015, the annual conference has brought together researchers and practitioners to discuss data and technology sovereignty, data fairness, and tools for regulating data processing. The theme of this year's conference was "Data Fairness in a Globalized World - Fundamental Rights Protection and Competition for International Data Governance."
Claudia Müller-Birn contributed with a talk on enabling responsible technology design through participation. She shared insights from the HCC research project "WerteRadar". In this project, researchers from computer science, media pedagogy, and medicine work together to reconceptualize the process of health data donation in a value-oriented way.
In her talk, Claudia Müller-Birn addressed challenges associated with socially responsible technology design in the healthcare domain. In this domain, the secondary use of routinely collected patient data (e.g., electronic health records) is a promising approach to enable precision medicine and data-driven healthcare systems. However, such secondary use of patient data requires patient consent. Consent is ensured through a standardized template text for patient information and a consent form, the so-called "broad consent". Even though this implemented "broad consent" template is considered feasible and scalable to use in the healthcare domain, as well as legally and ethically appropriate, its widespread use requires a high level of continuous acceptance by patients. It, therefore, necessitates a high level of transparency regarding the processes and regulations within the information materials.
Prof. Müller-Birn's research builds on value-sensitive design (VSD) to ensure and improve acceptance of consent forms in the medical domain. VSD is a theoretically grounded approach to systematically elicit users' values, needs, and concerns and actively consider them in technology design. As part of the research project "WerteRadar," we developed participatory workshops at the HCC research group to elicit values in close collaboration and dialogue with patients and patient advocacies of vulnerable groups, i.e., patients with a rare disease. Based on our workshop method, we will derive design requirements for patient-oriented data donation processes in the healthcare domain. In her talk, Claudia Müller-Birn introduced the proposed workshop method and the findings from three conducted workshops.
The talk is based on collaborative research and includes contributions from Freie Universität Berlin | Human-Centered Computing (Prof. Dr. Claudia Müller-Birn, Peter Sörries, David Leimstädtner), Fernuniversität Hagen | Mediendidaktik/-pädagogik (Prof. Dr. Sandra Hofhues), and Charité-Universitätsmedizin Berlin (Prof. Dr. Matthias Rose).
The slides and visual recordings can be accessed here - a video recording of the talk will be published on the Forum Privatheit page soon.