Data – useful, important, worth protecting

Switzerland is lagging behind internationally in the digitisation of patient data. According to a study by the Bertelsmann Foundation a few years ago, Switzerland ranked 14th out of 17 in comparison with the EU states and 3 OECD countries. This does not correspond to a modern healthcare system.

Switzerland’s healthcare system is organised on a federal level. The Confederation is responsible for health insurance; however, the coordination of health care providers, such as hospital planning or the authorisation of outpatient service providers, is carried out by the cantons. Therefore, strategic development in the health sector is also a joint effort of the Confederation and the cantons. This certain autonomy of the cantons makes a nationwide, cross-service provider patient file difficult.

Up to now, it can happen that a patient comes to hospital and not all the necessary data is available because it is in so many different places.

And this is where the electronic patient dossier (EPD) comes into play.

There is still no electronic patient file in Switzerland in which all the information flows together in a structured way. And if patient files are available digitally, they exist in different formats on different systems. This poses a major problem for the interoperability of data.

At the beginning of the Corona pandemic, it became clear that Switzerland had difficulties keeping track of infections. Some cantons reported new cases manually and by fax instead of using digital channels.

Standardised exchange possibilities for digital medical records are needed. A digital patient dossier enables personalised healthcare that takes into account, for example, a patient’s individual genetic predispositions. More precise diagnosis and treatment would be possible.

Both healthy and sick people are reluctant to entrust their data to commercial or government organisations. Could the supplementary insurance company exploit a predisposition to illness to increase the policy? Are people considered to be ill if they only have a predisposition, without the disease having even broken out? It is not yet possible to estimate the direction in which everything will develop in the future. It is important that citizens are informed about who uses their data and for what.

Switzerland’s big advantage is that patients trust research institutions and hospitals. The challenge is to keep that trust. Everyone must take an active interest in what happens with their own data.

Tailor-made medicine for everyone has a price, namely patient data.

Research and artificial intelligence (AI) are two other important points to consider with regard to medical data. Researchers have high hopes for artificial intelligence, which could help doctors by diagnosing various diseases. Everyone has a unique DNA, which not only provides information about external characteristics and origins, but also shows the probability of contracting various diseases, e.g. cancer, diabetes, Parkinson’s disease, etc. The promise of medicine: the more data we have, the more diseases we can diagnose.

The promise of medicine: the more data available about someone, the better the diagnoses and the more targeted the therapies. Many diseases could be detected in advance and perhaps prevented.

For science, the large amount of health data is paradise: if it is analysed and linked by many millions of people, medical research can make undreamt-of progress. Standardised one-size-fits-all therapies work, but not equally well for everyone. And for some patients, not at all.

Personalised medicine uses the large amounts of health data to develop therapies tailored to individual patients. It is important to base research and clinical decisions on real health data. Only in this way can personalised medicine work, taking into account individual patient characteristics.

But AI needs to be fed with data in order to learn. In this context, a central system for patient data would be essential and the health data would have to be available to medical research and society. If patient information were stored centrally, it would be possible to find out very quickly who needed special treatment in the case of new findings on a certain disease.

It is important, however, that personal data such as name, address, contact details, etc. as well as metadata remain protected to prevent misuse.

Data or not, AI remains a pipe dream for the time being. Switzerland is failing in the task of bringing together and standardising clinical data between different healthcare providers and facilities.

But what about data protection and our laws?

The Swiss health system is based on a federal structure in which the federal government, cantons and municipalities have different competences. Health care costs are not covered by the state, but by private health insurance companies (with the exception of accident insurance). The inconsistent system makes it complicated to exchange information between clinics, practices and hospitals, and even within the canton. There is a lack of binding interoperability standards.

The different cantonal health systems as well as Swiss legislation make it difficult to use the data. The federal law on the electronic patient file, which came into force on 15 April 2017, aims to improve the exchange of data within the healthcare system. Secondary use of the data, for example for research purposes, is not provided for, even with the patient’s consent.

Almost all over Europe, access to health data is very difficult for research and industry. In many European countries, health data is not centrally managed. Data formats are often incompatible. Strict data protection laws prevent their use without the explicit consent of the patients themselves.

European role models are Nordic countries like Denmark. It has an excellent electronic medical record, which is also used for research. Estonia has also set up a modern system for e-government and electronic patient dossier in recent years, the basis of which is the nationwide eID for residents. In Finland, all patient data has been centrally managed for years and used in various projects.

A new legal framework is needed where people can securely store, merge and control access to their diverse data from smartphones, patient records, shopping data and genome data. The principles of “Self-Sovereign Identity (SSI)” and “privacy by design” should be applied.

Physicians learn extremely sensitive and intimate information about their patients on a daily basis. Therefore, their responsibility with regard to data protection and data security is correspondingly high. This data belongs to the category of “personal data requiring special protection” and is accordingly strongly protected by the Swiss Data Protection Act. Additional requirements may arise from the European General Data Protection Regulation (GDPR), which took effect on 25 May 2018.


  • Bertelsmann Foundation