What are health data and why are they important for research?
Health data are personal information about an individual's health status. This includes diagnoses, treatments, medications, lab results, and genetic information. In Switzerland, health data are classified as particularly sensitive personal data according to Article 5 letter c of the Federal Act on Data Protection (FADP).
These data are highly valuable for research, as they can provide insights into disease progression, treatment effectiveness, and new therapeutic approaches. They allow researchers to identify patterns and develop new medical strategies.
How can I make my health data available for research?
In Switzerland, there are several ways to make your health data available for research:
- Electronic Patient Record (EPR): You can choose to share your data for research purposes.
- Consent via your doctor or hospital: You can give consent for your data to be used for research.
- Participation in clinical studies: In this case, your data are collected directly for research purposes.
It’s important to note that, under the Human Research Act (HRA), you must always provide informed consent.
How does Switzerland ensure the security and confidentiality of my health data?
Switzerland has strict laws and regulations to protect health data:
- The revised Data Protection Act (FADP) of 2022 strengthens the protection of personal data.
- The Human Research Act (HRA) governs the use of health data in research.
- The Electronic Patient Record Act (EPRA) sets strict security standards for the electronic patient record (EPR).
In addition, healthcare institutions and research organizations must implement specific technical and organizational measures to ensure data security.
Who has access to my health data and how are they protected?
Primarily, you yourself and authorized healthcare professionals have access to your health data. In research contexts, only authorized researchers may access the data, and only with your consent.
The protection of this data is governed by various laws:
- Federal Act on Data Protection (FADP)
- Human Research Act (HRA)
- Electronic Patient Record Act (EPRA)
These laws require that health data be stored and transmitted in encrypted form. There are also strict access controls and logging requirements.
Wearables and personal health data
Nowadays, many people collect their health data using wearable devices such as smartwatches or fitness trackers. These data are often automatically shared with device manufacturers like Apple, Samsung, Fitbit, or Xiaomi. In some cases, they may also be shared with health insurers or medical professionals.
Device manufacturers must comply with Swiss data protection regulations when processing data from Swiss users and are obligated to implement adequate technical and organizational safeguards. Despite these protections, a residual risk remains. You should be aware of the sensitivity of your health data and carefully consider which data you wish to share.
What rights do I have regarding my stored health data?
Under Swiss data protection law, you have the following rights:
- Right to access: You can request information about what data is stored about you.
- Right to object: You can object to the processing of your data.
- Right to block, correct, or delete data: You may request that data processing be blocked, that no data be disclosed to third parties, or that personal data be corrected or deleted.
- Right to erasure: In certain cases, you can request the deletion of your data.
How are my data anonymized or pseudonymized – and what does that mean?
Anonymization means that any information that could lead to the identification of your person is removed or altered. In Switzerland, the FADP regulates the handling of anonymized data.
For you, this means that your data can be used for research without any reference to your identity. Anonymized data is no longer subject to data protection law.
Pseudonymized data refers to personal data where directly identifying information (such as name or address) has been replaced by a pseudonym (e.g., a code). Unlike anonymized data, pseudonymized data can still be traced back to you with additional information (a key). In Switzerland, pseudonymization is regarded as an important tool to balance data protection with the need for data use.
What is the goal of the federal DigiSanté program?
The Swiss federal DigiSanté program aims to make the healthcare system more efficient and patient-centered through digital solutions. A core goal is the improvement of health data exchange, which not only enhances healthcare delivery but also opens up new opportunities for medical research.
Improved availability and networking of health data can give researchers access to a larger, better-structured data pool, potentially advancing the development of new therapies and improving our understanding of diseases — always within the boundaries of strict data protection regulations.
What is the Electronic Patient Record (EPR) and how can I use it?
The Electronic Patient Record (EPR) is a collection of personal health documents in digital form. It was introduced by the Electronic Patient Record Act (EPRA) and allows patients to store and manage their health information centrally.
You can open an EPR through a certified EPR community. Usage is voluntary, and you decide which documents are stored and who has access.
What role do pharmaceutical companies play in the use of health data for research?
Pharmaceutical companies play a crucial role in medical research. They use health data to develop new medications and improve existing treatments. In Switzerland, they must comply with strict legal requirements:
- The Human Research Act (HRA) regulates the conduct of studies.
- The Therapeutic Products Act (TPA) governs the development and approval of medications.
- The Data Protection Act (FADP) mandates the protection of personal data.
Pharmaceutical companies usually work with anonymized or pseudonymized data. For the use of personal data, explicit consent is required.
How can I stay informed about current research projects that use health data?
There are several ways to learn about research projects in Switzerland:
The Swiss National Clinical Trials Portal (SNCTP) provides an overview of ongoing clinical studies.
Universities and research institutions often publish information about their projects on their websites.
Patient organizations may provide details on relevant research initiatives.
According to the Human Research Act, research projects that involve health data must be approved by an ethics committee, which ensures the rights and safety of participants are protected.
