The COVID-19 pandemic triggered the demand for data driven decision making amongst policy makers in the public health sector. Registration data on test results and vaccination status were extensively used to create meaningful data analytics.
This health crisis also revealed a remarkable paradox. Whereas governmental researchers intensified their effort to protect their citizens’ privacy, the societal trust towards governmental institutions declined.
The societal problem:
According to the General Data Protection Regulation (AVG), health data are considered ‘sensitive personal data’. This implies that these data can only be used for scientific research with each citizen’s consent. Ideally, the infrastructure and governance of public health data should be flexible enough for citizens to provide or withdraw this consent at any time. We believe that the flexibility of the current system is suboptimal.
To better understand our citizens motivations to provide or withdraw their consent is a first step towards a more citizen centred data collection method. The purpose of this study is therefore to unravel if, why and under which circumstances citizens are willing to share their health related data with governmental researchers. We aim to develop a data collection method in which these citizen’s perspectives are incorporated and build towards a public health database of high data quality. This database will help policy makers to better target, develop and evaluate public health interventions to eventually reduce the health inequalities in our society.
This study is a close collaboration between THUAS and the municipal health services (GGD’en).