The Swiss Personalised Health Network (SPHN) is a national initiative to promote the development of personalised medicine in Switzerland. The Swiss Academy of Medical Sciences is coordinating the implementation of the initiative for the Confederation. The data infrastructure required for the range of health data to be used for research and innovation purposes is currently being set up. The initiative, which was launched in 2017, is due to be completed by 2024, by which time a permanent data infrastructure will have been established.
Good progress in creating national structures
The national health data infrastructure will give researchers access to good quality data. The personalised medicine approach will allow more precise diagnoses to be made and treatments and interventions to be tailored to individual patients.
If the new possibilities presented by personalised medicine are to be exploited to the full, data organisation must occur at national level and be aligned with international standards.
The focus here is on clinical data, i.e. on collecting and processing patient data, core biological data (incl. bio databases) and on omics data (the study of the building blocks of life and life processes).
There are particular challenges here in collecting clinical data in a uniform way and ensuring its interchangeability (interoperability). A coordinated approach is required in order to ensure that this field – which is central to health systems, including Switzerland’s ¬– develops efficiently and effectively (i.e. avoiding duplication; ensuring interoperability of local and regional data systems; providing structured, high quality data).
The national personalised medicine initiative ensures that basic biological research and technological developments can be linked in the most innovative way possible in a clinical setting. For example, in the future genetic analysis will make it possible to tailor treatments more closely to the individual patient.
The work done so far
The SPHN initiative was launched in the 2017–2020 ERI funding period with the aim of setting up a national data infrastructure for clinical and associated data for research purposes. The initiative is a national project involving cooperation between higher education institutions, university hospitals and funding agencies (the Swiss National Science Foundation SNSF). The Swiss Academy of Medical Sciences (SAMS) is responsible for overall coordination of the initiative. The Swiss Institute of Bioinformatics SIB provides support as the national data coordination centre, responsible for ensuring interoperability between regional databases.
The SAMS has now built up a national network of all the relevant Swiss research institutions: university hospitals, university research institutes, ETH Domain institutions and others. In the current ERI funding period, service agreements have been signed with five university hospitals establishing the technical bases to allow for data to be exchanged nationally. Following calls for proposals in 2017 and 2018, 13 infrastructure development projects and 11 ‘driver projects’ (actual development projects in selected research fields) have been set up, funded to the tune of CHF 25 million. These calls accompanied the ETH Domain’s Personalised Health Related Technologies Initiative (PHRT).
An external evaluation conducted in 2019 by international experts reported positively on the SPHN initiative. The expert’s recommendations were taken into account in the SPHN 2021-2024 multi-year programme.
Institutionalisation of the national data centre
In the 2021–2024 ERI funding period, the network will be consolidated and the clinical data linked with the data coordination centre to give researchers unlimited access to the data for research purposes. The established processes must be consolidated according to the FAIR data principles - findability, accessibility, interoperabililty and reusability.
Furthermore, a number of ethical and legal questions must be addressed (relating to digital trust, data ownership and patient consent).
The national data infrastructure sets a standard for collecting and using data, one which must be applied in all research projects medium term. In the coming few years, the task of processing, selecting and structuring data according to type and quality so that it can be made accessible to researchers for research purposes will pose a particular challenge. The involvement of the cantonal university hospitals and gaining patients’ trust are key to the success of this initiative.
Nicole Schaad, SERI
Head, National Research
National Support Initiative: Personalised Medicine
www.sphn.ch: information on the initiative, on the projects supported and on neighbouring initiatives in clinical and biomedical research.