Project presentation at the ITAFORUM 2019
For a long time, laypersons in science were primarily considered to be objects of research or suppliers of research data. However, in recent decades their knowledge and competence have been recognised and laypersons are becoming more involved in the research process. A change in research culture is thus taking place. With this change, the challenges of translating scientific terms, codes and models into non-expert language are becoming apparent. This can be seen particularly clearly in so-called informed consent. The media and formats used so far to obtain informed consent are failing to achieve their goal of enabling participation and autonomous decision-making. Although they convey all the necessary information, the complexity of the issues and the way they are presented means that the target group does not (cannot) understand them sufficiently well.
The aim of this project, which is funded by the BMBFand carried out by the Evangelische Hochschule Nürnberg (EVHN) together with the Institute for Computer Science and Computational Science at the University of Potsdam (UP), is to strengthen the ability to participate as well as the ability to make informed, autonomous ethical decisions. A precondition for this is an adequate, generally understandable presentation of complex content.
In order to increase the transparency and effectiveness of informed consent forms, it is investigated to what extent structural similarities in Informed Consent forms can be used to simplify the content. At the same time, ethical aspects are identified that must be taken into account in a generally understandable presentation of informed consent forms so that patient autonomy can actually be maintained.
An interdisciplinary team from the fields of ethics, sociology and computer science is working together in the project to construct ethically reflected, modularized and iconographically meaningful enhanced interactive digital instruments. These are intended to respond to the challenge of conveying complex scientific content to laypersons in a new way. A classification system will be developed which groups the information of the examined documents. This results in a first reduction of complexity, which enables both consumers and producers of the informed consent forms to grasp, process and understand the bundled information faster and better. In a second step, the module contents are prepared with the help of interactive visualization techniques in such a way that a user-centered focus is created.