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A Vision of Future Healthcare: Potential Opportunities and Risks of Systems Medicine from a Citizen and Patient Perspective—Results of a Qualitative Study
International Journal of Environmental Research and Public Health ( IF 4.614 ) Pub Date : 2021-09-19 , DOI: 10.3390/ijerph18189879
Clarissa Lemmen 1 , Dusan Simic 1 , Stephanie Stock 1
Affiliation  

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.

中文翻译:

未来医疗保健的愿景:从公民和患者的角度看系统医学的潜在机遇和风险——定性研究的结果

(生物)医学的进步和技术创新使结合高维、异构的健康数据成为可能,以更好地了解疾病的原因,并使其可用于预测、预防和精准医学。本研究旨在通过六个焦点小组访谈,从公民和患者的角度确定对“系统医学”的看法和期望,所有访谈均逐字转录并进行了内容分析。在医疗保健中使用系统医学的未来愿景作为讨论的动力。结果表明,虽然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),但感知风险占主导地位。高度的技术化被认为是情感上的负担(例如,减少人们对他们的数据,失控、非人化)。将风险预测模型用于疾病事件和轨迹的风险-收益平衡被评为相当负面。对于不需要的数据使用、歧视和限制基本权利,存在规范和伦理问题。必须在政策框架和卫生政策实施策略中解决公民和患者的这些担忧和需求,以减少对系统医学的负面情绪和态度并利用其机会。
更新日期:2021-09-19
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