Major advances are being made in life sciences, medicine and information technology. This involves a huge and fast-growing quantity of health data. Coordinated action and a minimum degree of harmonisation of various types of data and information systems are needed in order to efficiently and effectively use health data for research and innovation. The Confederation’s national support initiative ‘Personalised Medicine’ is a step in this direction.
Various aims of research in personalised medicine include development of new medicines, optimise, optimisation of existing therapies as well as the detection and treatment of rare diseases. Research in this field is conducted both at the national and international levels. With its two federal institutes of technology (ETHZ and EPFL) and university research centres, Switzerland is very well positioned compared to other countries.
Adopting a coordinated approach
In Switzerland, considerable action needs to be taken in data organisation, in other words in gathering and processing patient data, basic biological data (including biological databases) and omics data (research into the building blocks of life and life processes). These challenges can be found both in fundamental and clinical research.
This is where the ‘Personalised Medicine’ national support initiative can make a difference. The aim is to leverage basic biological research and technological developments to improve clinical expertise. It should also enable Swiss higher education institutions and industries to efficiently use the latest advances in their research and innovation activities. Genetic analysis is one example of this. In the future, this technology should lead to more targeted therapies for individual patients.
During the initial development phase, the national support initiative will remain focused on universities and on patient data at university hospitals. Here, the challenge will be to use a language and concept that is as uniform as possible throughout Switzerland. This will make it much easier to exchange data between institutions. A national network of relevant stakeholders is key to optimal and cost-efficient organisation of data. Equally important are interfaces with related projects (e.g. the creation of a national biological database, biomonitoring).
Broadly backed support initiative
The support initiative is being jointly implemented by universities, (university) hospitals and research funding institutions (Swiss National Science Foundation, SNSF). The various stakeholders – swissuniversities, the Federal Institutes of Technology Board, the Swiss National Science Foundation (SNSF) and the Swiss Academy of Medical Sciences (SAMS) – have all agreed to this approach. In addition, they have decided that the SAMS will be responsible for overall coordination during the initial development phase (2017–2020). The Swiss Institute of Bioinformatics (SIB) will act as a national data coordination centre and take responsibility for ensuring the interoperability of regional databases.
As part of the planning for the national support initiative, various related topics such as data security, data integrity, data access rights, data archiving and data protection as well as confidentiality and ethical aspects will be defined.
The State Secretariat for Education, Research and Innovation (SERI) and the Federal Office of Public Health (FOPH) have issued a corresponding joint mandate to the SAMS to set up the Swiss Personalized Health Network (SPHN) and draft funding guidelines to maintain the necessary infrastructures. The SAMS has assigned this task to its National Steering Board (NSB), its Executive Board (EB) and various support bodies. The SPHNI has been operational since 2017.