DATA on Health and Diseases
In the light of the rapid progress in genomic analysis and information technologies, personal data relevant to the health and disease of individuals can be obtained and analyzed with increasing ease and efficiency. These data are important for individuals since they help to predict predispositions to diseases and the potential side effects of drugs. Moreover, these data are important for progress in medicine. The analysis of datasets from hundreds of thousands of individuals and the correlations with the occurrence of diseases benefits personalized prevention, the diagnosis and treatment of diseases, as well as medical research. Due to the value of health data for healthy individuals and patients, these data should be accessible for medical research and society at large. At the same time, personal data need to be protected in order to prevent misuse and to stay in possession of the owner who contributes the data.
Information and Responsiobility
ICT companies and various commercial databases offer services to store personal health data. Globally, the interest in genomic and health data, as well as the amount of data obtained from the individual usage of smart phones (currently there are more than 40’000 Health Apps available) is growing rapidly. At the same time, mistrust and privacy concerns are on the rise: Healthy individuals and patients hesitate to entrust commercial enterprises with their personal data. Because of the rapid growth and increasing complexity of health information, the accurate recording, safe storage, visualization and accessibility of health data has become an urgent issue for both society and the healthcare system. The World Economic Forum in Davos regards the control of health data as a competitive advantage.
Association Data and Health
The Association „Data and Health“ was founded in July 2012 and is in its initial start-up phase. The goal of the Association is to promote the debate on the collection, storage and use of individual medical and health data in Switzerland. This includes the analysis and discussion of the scientific, ethical, societal, legal and political aspects of the use of personal health data for personal health and medical research.
The Association will also promote the creation of a Swiss Health Data repository organized as a cooperative (Genossenschaft). Members’ personal health and medical data are stored, managed and used in such a way that their privacy is protected. The cooperative will serve its contributing members by securely storing their health records, which members can also use for their own healthcare. Additionally, the cooperative’s health database is of general importance for the health of society, for biomedical research, for healthcare practitioners, as well as for economic development.