Public Health Genomics
Big Data for Public Health Policy-Making: Policy EmpowermentMählmann L.a,b · Reumann M.a,c · Evangelatos N.a,d · Brand A.a,e
aUnited Nations University – Maastricht Economic and Social Research Institute on Innovation and Technology (UNU-MERIT), Maastricht University, Maastricht, The Netherlands
bPsychiatric Clinics of the University of Basel, Centre for Affective, Stress and Sleep Disorders, University of Basel, Basel, Switzerland
cIBM Research – Zurich Laboratory, Rüschlikon, Switzerland
dIntensive Care Medicine Unit, Department of Respiratory Medicine, Allergology and Sleep Medicine, Paracelsus Medical University, Nuremberg, Germany
eDepartment of International Health, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands
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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.
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