Mählmann Laura, Reumann Matthias, Evangelatos Nikolaos, Brand Angela
United Nations University - Maastricht Economic and Social Research Institute on Innovation and Technology (UNU-MERIT), Maastricht University, Maastricht, the Netherlands.
Psychiatric Clinics of the University of Basel, Centre for Affective, Stress and Sleep Disorders, University of Basel, Basel, Switzerland.
Public Health Genomics. 2017;20(6):312-320. doi: 10.1159/000486587. Epub 2018 Apr 4.
Digitization is considered to radically transform healthcare. As such, with seemingly unlimited opportunities to collect data, it will play an important role in the public health policy-making process. In this context, health data cooperatives (HDC) are a key component and core element for public health policy-making and for exploiting the potential of all the existing and rapidly emerging data sources. Being able to leverage all the data requires overcoming the computational, algorithmic, and technological challenges that characterize today's highly heterogeneous data landscape, as well as a host of diverse regulatory, normative, governance, and policy constraints. The full potential of big data can only be realized if data are being made accessible and shared. Treating research data as a public good, creating HDC to empower citizens through citizen-owned health data, and allowing data access for research and the development of new diagnostics, therapies, and public health policies will yield the transformative impact of digital health. The HDC model for data governance is an arrangement, based on moral codes, that encourages citizens to participate in the improvement of their own health. This then enables public health institutions and policymakers to monitor policy changes and evaluate their impact and risk on a population level.
数字化被认为将从根本上改变医疗保健。因此，由于拥有看似无限的数据收集机会，它将在公共卫生政策制定过程中发挥重要作用。在这种背景下，健康数据合作社（HDC）是公共卫生政策制定以及挖掘所有现有和快速涌现的数据源潜力的关键组成部分和核心要素。要充分利用所有数据，需要克服当今高度异构的数据格局所特有的计算、算法和技术挑战，以及一系列不同的监管、规范、治理和政策限制。只有在数据可访问和共享的情况下，大数据的全部潜力才能实现。将研究数据视为公共物品，创建健康数据合作社以通过公民拥有的健康数据赋予公民权力，并允许数据用于研究以及开发新的诊断方法、疗法和公共卫生政策，将产生数字健康的变革性影响。数据治理的健康数据合作社模式是一种基于道德准则的安排，鼓励公民参与改善自身健康。这进而使公共卫生机构和政策制定者能够监测政策变化，并在人群层面评估其影响和风险。
