Institute for Health Economics and Clinical Epidemiology (IGKE), University of Cologne, Faculty of Medicine and University Hospital Cologne, 50935 Cologne, Germany.
Int J Environ Res Public Health. 2021 Sep 19;18(18):9879. doi: 10.3390/ijerph18189879.
Advances in (bio)medicine and technological innovations make it possible to combine high-dimensional, heterogeneous health data to better understand causes of diseases and make them usable for predictive, preventive, and precision medicine. This study aimed to determine views on and expectations of "systems medicine" from the perspective of citizens and patients in six focus group interviews, all transcribed verbatim and content analyzed. A future vision of the use of systems medicine in healthcare served as a stimulus for the discussion. The results show that although certain aspects of systems medicine were seen positive (e.g., use of smart technology, digitalization, and networking in healthcare), the perceived risks dominated. The high degree of technification was perceived as emotionally burdensome (e.g., reduction of people to their data, loss of control, dehumanization). The risk-benefit balance for the use of risk-prediction models for disease events and trajectories was rated as rather negative. There were normative and ethical concerns about unwanted data use, discrimination, and restriction of fundamental rights. These concerns and needs of citizens and patients must be addressed in policy frameworks and health policy implementation strategies to reduce negative emotions and attitudes toward systems medicine and to take advantage of its opportunities.
生物医学和技术创新的进步使得将高维、异质的健康数据结合起来以更好地了解疾病的原因并将其用于预测性、预防性和精准医学成为可能。本研究旨在通过六次焦点小组访谈,从公民和患者的角度确定他们对“系统医学”的看法和期望,所有访谈均逐字记录并进行了内容分析。系统医学在医疗保健中的未来应用前景为讨论提供了一个刺激因素。结果表明,尽管系统医学的某些方面被认为是积极的(例如,在医疗保健中使用智能技术、数字化和网络),但感知到的风险占据了主导地位。高度的技术化被认为是情感上的负担(例如,将人简化为他们的数据、失去控制、非人性化)。对于使用风险预测模型来预测疾病事件和轨迹的风险收益平衡的评价相当负面。对于不希望的数据使用、歧视和基本权利的限制存在规范和伦理方面的担忧。这些公民和患者的关注和需求必须在政策框架和卫生政策实施策略中得到解决,以减少对系统医学的负面情绪和态度,并利用其机遇。