A patient data infrastructure for care and research
Digitalisation of the healthcare system is a priority for the federal government, as the new Digital Switzerland Strategy adopted by the Federal Council in December 2022 makes clear. Under the lead of the Federal Office of Public Health and the Federal Statistical Office, the aim is, in particular, to expand the multiple and interoperable use of health data (e.g., for research) between Swiss hospitals and research facilities. This requires a combination of technical, governance and coordination measures and amendments to existing legislation. Many initiatives are already ongoing, some of them having already started a relatively long time ago; the Swiss Personalized Health Network SPHN, for example, was launched back in 2017.
In this context, the SSC aims to provide recommendations on the measures needed to collect, structure and integrate patient data from different sources in order to improve health care and the efficiency of both health care and biomedical research systems in Switzerland. These recommendations have been submitted in three upcoming consultation procedures on:
- the Human Research Ordinance (April to August 2023)
- the 2025–28 ERI Dispatch (June to September 2023)
- the Electronic Patient Record Act (June to October 2023)
The general approach was to interview experts (clinicians, researchers, medical data specialists, public authorities) in Switzerland and abroad. An SSC working group formulated targeted and sound recommendations based on these interviews and a literature review.
Overview of the terminology and strategies relating to research infrastructure
A research infrastructure RI is generally defined as a tool that provides scientific communities with resources and services to conduct research in their respective fields. However, different definitions coexist, including in Switzerland.
These essential and costly infrastructures require careful medium- and long-term planning, conducted in such a way that duplication is avoided and needs are anticipated. Many countries, including Switzerland, are establishing governance arrangements to regulate the planning, coordination, evaluation, financing and monitoring of RIs. One of the questions facing the authorities is how to effectively identify the needs of scientific and civil society and at what level these needs should be addressed. In Switzerland, the Swiss Roadmap for Research Infrastructures is drawn up every four years, the first in 2011. This is an instrument designed to coordinate national RIs and Switzerland's participation in international RIs.
With this project, the SSC primarily wanted to clarify the concept of research infrastructure and to obtain an overview of the various definitions used both in Switzerland and abroad, by whom, for what purposes and with what effect. The second objective of the project was to identify any improvements in terminology and governance that can be recommended on the basis of the results. In the autumn of 2022, the SSC asked Professor Benedetto Lepori (Università della Svizzera italiana USI) to carry out research in this area; he and his assistant Marco Cavallaro submitted their research report at the end of January 2023. The study showed that Switzerland differs from the other countries considered in two respects:
- Its legislation does not clearly define what an RI is but rather qualifies it according to the different sources of funding available (SNSF, the Academies, Art. 15 RIPA, etc.);
- The Roadmap is very closely linked to funding decisions, whereas in other countries these processes – identification/planning and funding – are usually separate.
On the basis of these results and further reflections, the Council made recommendations on the governance of RIs as part of the consultation on the 2025–28 ERI Dispatch.
Baccalaureate Education
The COVID-19 pandemic has greatly accelerated digital transformation in formal education. The SSC welcomes the many efforts that are contributing to greater digital literacy for all students, creating the broad perspective which is so vital in education. For digitalisation is changing what is considered essential knowledge in many subjects, in some cases at a very rapid pace. Its impact is felt in different areas – such as politics, health, the world of work, religion and culture. At the same time, an ability to deal with change in a reflective manner is increasingly important.
As the Swiss academic baccalaureate is currently being reformed (national project on the development of the academic baccalaureate), in 2020/2021 the Council took a more in-depth look at this level of schooling. To this end, it commissioned a report from Professor Michael Geiss, Head of the Centre for Education and Digital Transformation at the Zurich University of Teacher Education. The SSC supplemented this expertise from its own perspective and drew up recommendations for players in education at cantonal and federal level.
The publication was approved by the Council in September 2021, and published in November 2021:
In an internal consultation process, the SSC also expressed its views on the reform of the baccalaureate. In September 2022, the CSS furthermore participated in the consultation procedure.
In December 2023, the SSC has participated in the consultation on the framework curriculum for baccalaureate schools.