FAQ
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). While the Swiss Academy of Medical Sciences (SAMS) is the overarching body of the SPHN initiative, the SIB Swiss Institute of Bioinformatics is responsible of the implementation of the BioMedIT project and manages the Data Coordinaton Center.
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 Organisation (SCTO), Swiss Biobanking Platform (SBP), Swiss School of Public Health (SSPH+), swissethics and the Human Biomonitoring Cohort Project (HBCP).
As part of the Federal mandate for the next funding period (2021 – 2024), it is envisaged that SPHN will broaden collaboration beyond the academic sector, elaborating synergies with industrial partners. Public-private partnerships have become an effective way to benefit from the respective strengths of the public and private sectors, to address health-care innovations collaboratively. Direct funding from the Swiss Personalized Health Network initiative (SPHN) is exclusively allocated to public research institutions. Partnerships are elaborated and defined on a project-by-project basis.
Most importantly in the realm of SPHN: projects and collaborations involving patient data must obtain approval from the ethics committee prior to starting the project. A policy how SPHN will engage with the private sector is currently being developed by SPHN’s Ethics, Legal and Societal Implications advisory group (ELSIag).
The SPHN initiative is financed by the State Secretary for Education, Research and Innovation (SERI).
SPHN will fund three types of projects:
- Infrastructure implementation projects
- Infrastructure development projects
- 'Driver' projects
Further information is available on the Projects page.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Solely the health personnel in charge of you can access your data. Researchers will only work with encoded or anonymised data.
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.
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 address questions related to patients rights.
More information can be found on the webpage of Swiss Confederation (in German/French/Italian):
On the website of Swissethics or SAMS:
- Regarding the general consent (https://swissethics.ch/en/templates/studieninformationen-und-einwilligungen or https://www.samw.ch/en/Ethics/Topics-A-to-Z/General-consent.html)
On the website of the Federal Data Protection and Information Commissioner (FDPIC):
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.
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.
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.
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.
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.