To translate the identification of progressive neurological disorders such as Alzheimer's disease via biomarkers into primary healthcare, potential benefits, harms, stigma, and futility must be assessed. To enable shared decision making, the attitudes, needs, and expectations of clinicians and patients must be explored. PREPARE is an interdisciplinary project that aims to provide empirical insights into the specific attitudes and needs of GPs, individuals at risk, and their families.
As part of the project, we will develop a risk communication tool for lay people that allows communicators to present relevant information in a balanced and transparent way enabling patients to weigh potential consequences of biomarker testing to prepare an informed decision. Limited risk literacy, especially low-numerate people, as well as specific needs and limited technical abilities of those who are already cognitively impaired (e.g., attention control) are taken into account. The development of the tool is based on preliminary technical work in the form of a prototype development for communicating clinical scoring models to persons outside the field.
PREPARE is funded by the Federal Ministry of Education and Science (BMBF). The project is a collaboration between the University Medical Center Göttingen (UMG), the Department of Medical Ethics and History of Medicine (EGM), the German Center for Neurodegenerative Diseases (DZNE) and the Harding Center for Risk Literacy.