PREPARE: Risk Communication in Future Primary Care for Alzheimer's Disease

Background

Neuroscientific research has recently made great progress in the study of biomarkers that can provide clues to the presence of diseases such as Alzheimer's disease. Using such biomarkers, which are extracted from cerebrospinal fluid (CSF) or blood, a diagnosis could be made long before the first clinical symptoms appear. This represents an enormous opportunity. However, such diagnostics also carry risks, as they have numerous implications for those affected. It is therefore important to identify and investigate the ethical, legal, and social aspects of such a development in addition to the technical and methodological aspects.

Project objective

The project aims to investigate the clinical and personal benefit-harm ratio of prodromal and preclinical identification of Alzheimer's biomarkers. This will be considered in the context of preventive and therapeutic options as well as potential psychosocial impacts, such as stigma. The project focuses on risk communication regarding dementia risk by general practitioners.

Four subprojects will examine the ethical, normative, and societal implications of Alzheimer's risk assessment, gain empirical insights into attitudes and needs regarding (blood-based) biomarkers and risk communication in primary care practices and among patients, and develop a digital tool to support risk communication in primary care practices.

Project process

In workshops, possible future scenarios will be developed regarding how Alzheimer's risk assessment in German primary care could look, taking into account pluralistic orientations as well as social, economic, and legal factors. Attitudes, information needs, and risk and health literacy of primary care physicians and patients will be assessed using qualitative semi-structured interviews and quantitative surveys.

Based on the results, concrete communication tools for medical practice will be developed, such as communication guidelines and digital resources. The output will also be a digital tool designed to enable primary care physicians to present relevant information in a balanced and transparent manner, enabling patients to weigh the potential consequences of biomarker testing and make an informed decision.

Role of the Thyrian Working Group

The working group will use its expertise to focus on the empirical collection and analysis of primary care physicians' attitudes and needs, but will also be involved in the other project components.

The contact person for the project is Dr. Anne Blawert.