Browsing by Subject "health data"

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  • Kontiainen, Laura (Helsingin yliopisto, 2021)
    Health apps that are used by individuals in multiple ways to improve their health and wellbeing are promoted as empowering the individual to control their health. Their increasing use means that they also gather more data concerning the health of the users. This data could be used for research or other public interest purposes, but its availability for secondary use is limited. In the EU there is also political interest to both increase availability of personal data in the inner market, as well as facilitate the use of eHealth solutions, including health apps. In this thesis, I will use legal dogmatics as a method to analyse how health apps could be used to gather data for public interest purposes. I look at what type of data is gathered by the health apps and why it is useful, how the GDPR sets criteria for the gathering of data through the apps and it’s secondary use, and how in special cases of research and other public interests, the rights of the data subject can be derogated. I will also compare this to the planned regulatory framework for data sharing, of the proposal for the Data Governance Act has been published. The main conclusion of the thesis is that that the framework for processing data for public interest purposes does not, in most cases, suit either gathering data by health apps, or secondary use of this data. This is both because the public interest as a processing basis needs to be based on law and needs to be balanced similar to a limitation of fundamental rights in the Charter of Fundamental Rights of the European Union. This approach would in most cases be too heavy for this purpose. Instead, the processing is mainly possible on a consent basis. This could, even with the possibility of easier mechanisms for data sharing through data altruism organisations, affect the quality of the data gained, as the willingness to share data – and to even use a health app - vary between different demographic groups.
  • Tupasela, Aaro; Snell, Karoliina; Tarkkala, Heta (2020)
    The Nordic countries aim to have a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon can be attributed to the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision making and improve the health and living conditions of the population. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable "full-scale utilization" of health and welfare data.