Personalised medicine requires large amounts of data to be linked and analysed in order to adapt diagnoses and therapies to individual patients. In order to make this data available within the healthcare system at the quality needed for research and innovation, a sustainable infrastructure and harmonisation of the different types of data and information systems are required. This is where the federal government's national support initiative 'Personalised Medicine' plays an essential role.
Among other things, research in the area of personalised medicine focuses on the development of new drugs, the optimisation of therapies and the detection and treatment of rare diseases. Due to the ever-increasing amounts of data being generated in life sciences and medicine, this area of research is becoming more important both nationally and internationally. With the two federal institutes of technology (ETHZ and EPFL) and university research centres, Switzerland is well-positioned in this area of research compared to other countries.
Ensuring the interoperability of data
The Confederation's national support initiative 'Personalised Medicine' has been running since 2017. The aim is to ensure a well-coordinated approach to organising data for personalised medicine. One important objective of the support initiative is to create a sustainable data infrastructure that provides access to high-quality clinical data for researchers in Switzerland. A further objective is for university hospitals and universities to work together to establish uniform standards for the structuring of data so that data from various sources can be compared and linked (‘interoperable').
The support initiative makes it easier for the relevant actors to work together at national level. In addition, the interfaces between the data infrastructure to be established and related projects (e.g. biobanks, cohort studies) will also be developed. Finally, because clinical health data contain sensitive information, ethical and regulatory aspects and data protection are also important. Therefore, the support initiative includes various recommendations in this regard.
The support initiative is implemented as a national collaborative endeavour between universities, (university) hospitals and funding bodies (Swiss Academy of Medical Sciences SAMS and Swiss National Science Foundation SNSF). SERI has assigned overall coordination to SAMS. Responsibility for the 'national data coordination centre', which includes the BioMedIT support infrastructure, has been given to the SIB Swiss Institute of Bioinformatics. The national data coordination centre will prepare clinical data in a way that ensures interoperability and enables the data to be used for research purposes in a secure IT environment.
Working under a mandate from both SERI and the FOPH, SAMS has been working to create the 'Swiss Personalized Health Network' (SPHN) since 2017. SPHN bodies and activities are shown in the chart below. This initiative will continue until the end of 2024, by which time the data infrastructure should be established and the data coordination centre transferred to a regular organisational structure.