FAQs

Who is involved in the SPHN initiative?

The main participating institutions in the initial phase of the SPHN initiative (2017-2020) are the five University Hospitals (CHUV, HUG, Inselspital, USB, USZ) including the respective universities and other public research institutions (universities, ETH-Domain, Universities of Applied Sciences, others), as well as the SIB Swiss Institute of Bioinformatics.

SPHN members will provide together coordinated interdisciplinary research platforms that closely interconnect molecular-genetic (e.g. -omics) technologies and research, medical and clinical bioinformatics, biobanking, patient oriented clinical and health-services research (so-called Personalized Health Platforms). The Data Coordination Center, operated by SIB, will enable the interoperability and management of clinical and omics data accross these research platforms.

 

Such platforms have already been initiated within the “Lausanne-Geneva-(Bern)” cluster (i.e. “Lemanic Center for Personalized Health“) and more recently also within the “Zurich-Basel-(Ticino)" cluster (collaboration between the “Competence Center for Personalized Medicine (CC-PM)“ Zurich and the “Personalized Health Platform“ Basel).

SPHN will also link with existing projects and organisation such as the Swiss Clinical Trial Organization (SCTO), Swiss Biobanking Platform (SBP), Swiss School of Public Health (SSPH+), swissethics and the Human Biomonitoring Cohort Project (HBCP). 


Who finances the SPHN?

The SPHN initiative is financed by the State Secretary for Education, Research and Innovation (SERI). 

What type of projects are funded by SPHN?

SPHN will fund three types of projects:

  • Infrastructure implementation projects
  • Infrastructure development projects
  • 'Driver' projects

 

Further information is available on the funding page.

What is the added value of making data from hospitals and research institutions interoperable?

Until recently, the data sets generated at the hospitals and research institutions were of very different types. Hospitals mostly collect data on the patient’s health status (e.g. age, weight, body temperature etc.). In contrast, research institutions mostly generate and work with human molecular data (e.g. genetic data).

 

Combining these two types of data allows one to investigate the link between genetic disposition and the occurence, progress and controllability of specific diseases.  

Why do we need a national network for personalized health?

Meaningful analyses of health-related data require the availability of a minimum amount of data. In order to reach this critical amount of data in a rather small country such as Switzerland, relevant actors involved in personalized health research need to collaborate and combine their efforts in order to optimize the use of available resources.

Will the SPHN initiative contribute to an increase of public health care costs?

The progress in personalized medicine research will allow to detect diseases at an early stage and moreover to offer treatments, which are better targeted to the patient’s individual needs and should therefore be more effective. As a consequence, resources and public health care costs will be managed more efficiently.

 

We have seen several large, national informatics projects supported by the Confederation failing in the past – why should there be yet another large initiative?

The aim of the SPHN initiative is to establish a network using already existing resources, such as infrastructure, established platforms, organizations etc. Hence, the SPHN initiative does not start from scratch and does not aim at creating a novel centralized database. As a consequence, and compared to previous national projects, the risks of failure are mitigated. 

Why should I share my data?

There is an old saying that there is power in numbers. Sharing your data allows you to contribute to ongoing research and the development of future medicine and health care. The more data we have to analyse, the better the chances to make meaningful analyses, important discoveries as well as accurate and reliable diagnostics.

Why should I sign the general consent form?

By signing the general consent, you make an important contribution to the advancement of medical research. You might have no direct personal benefit from this research, but at large, the combined findings from several research projects might improve the treatment or the prevention of a particular disease. 

Who has access to my data as a patient?

Solely the health professionals that are in charge of treating you has access to your data. Any other usage of your data requires your informed consent. In the case of a research project, the ethics commission of the respective canton of the research institution needs to additionally approve the usage of your data within the frame of the particular project.

What happens to my data and how will it further be used?

In the case where you have agreed to sign the general consent, your data will be encoded before being put at the disposal of researchers for “reuse”. The later will have to request the authorization of the cantonal ethics committee for the usage of your data. Once researchers are authorized to use your data, it will be compared with data from thousands or even millions of other people. The ultimate aim of this comparative analysis is to find significant similarities or striking differences between the data.  

What do you mean by "reuse" of data?

The term “reuse” applies, when data are used for purposes other than those for which they were originally intended or generated. This then requires the explicit authorization of the patient.  

Where are the data stored that will be exchanged within the SPHN?

Patient’s data will be stored on the server of the hospital, which has taken care of you and collected your data. Data generated in the context of a research project can be encoded or anonymized and temporarily stored on a server of the SIB Swiss Bioinformatics Institute. Once the project is completed, the copy of the data will be deleted.

How do you ensure data privacy and confidentiality?

Solely the health personnel in charge of you can access your data. Researchers will only work with encoded or anonymised data.

How are my data protected against violation?

Data are stored on secured servers, which are conform to legal safety standards at the local hospital. Before being used for research purposes, the data will be encoded or anonymised.

As a patient, what are my rights concerning my data?

The Federal Act on Data Protection as well as the Federal Act on Research involving Human Beings define the rights of every individuum. Every patient has the right to decide what happens to his/her data. The ELSI Advisory group, has specifically been set up to adress questions related to patients rights. 

Where do I find the relevant legal regulations?

More information can be found on the webpage of Swiss Confederation (in German/French/Italian):

§   Federal Act on Data Protection
§   Federal Act on Research involving Human Beings

On the website of Swissethics
• Regarding general consent (http://www.swissethics.ch/index_f.html)

On the website of the Federal Data Protection and Information Commissioner (FDPIC) - german only:
•  https://www.edoeb.admin.ch/datenschutz/00628/00629/00635/index.html?lang=de

As a patient, is it possible for me to access my data?

Yes. According to the Federal Act on Data Protection (Article 8) every individual is entitled to request a copy of his/her data from the controller of a data file. 

What happens if I change my mind and do not want to share my data anymore?

If you decide to share your data, you can retract from your decision at any moment and without justification. In that case, you notify the institution in charge by mail and inform them about your decision.

Will personalized medicine allow health insurances to refuse clients based on their health data?

The data will only be used for research purposes and for the usage authorized by the patient. Data will under no circumstances be passed on or sold to third parties. 

How reliable are personalized medicine results?

Thanks to the enormous progress in rapid high-resolution molecular analysis technologies during the last decade, personalized medicine has already started to become a reality in today’s medicine, in particular in oncology. It now remains to be extended to further therapeutic areas. While the results are promising, one can never expect a total reliability. 

 

Will personalized medicine displace the close relationship between doctors and patients?

As further progress is made, medical practices evolve at the same time. The doctor-patient relationship has always been a crucial component of medical care. Personalized medicine approaches provide doctors with more information about the patient than before. It remains a responsibility of the doctor to check with the patient, whether the additional data is truly meaningful and useful for the prevention, diagnostics or treatment of a disease. The doctor-patient relationship therefore remains of utmost importance also in personalized medicine approaches.    

What is personalized medicine?

The aim of personalized medicine is to exploit the potential of different sets of data related to human health: « -omics » data (genomics, transcriptomic, proteomic, metabolomics etc.), clinical data from hospitals and medical offices, data from biobanks as well as health data collected by individuals themselves (« self-tracking » data).

 

Personalised medicine aims to use these data for the optimal medical care of each individual - starting with prevention of disease, to diagnostics and treatment until rehabilitation.

 

The concept of personalised health goes beyond this aim: the findings from these data will not only benefit individual patients but also the population at large, as they will make it possible to recognise health risks at an early stage and develop appropriate health strategies. 

More FAQs regarding research funding are available in the Funding section.