Data increasingly empowers all modern research, and exploiting growing data sets allows for new methods and approaches in research and medicine. In the healthcare sector, this data is often personal health information, such as scans, test results, measurements, and even genetic information. The richness of this data can bring huge value to research, but its gathering, storage and use poses a number of concerns. 

Such personal health data could have significant consequences if released or improperly accessed, both to the individual and to the organisations which did not secure it.

It is important that these risks can be managed, in order to minimise disruption on research, but equally importantly to ensure that sensitive data is correctly identified so that it can be appropriately handled. It can be difficult to maintain this balance, especially given the rapid pace of change in the data available, new analysis methods, new infrastructure, and new legislation.  

BioMedIT and the Swiss Personalised Health Network (SPHN) help to address these challenges, providing not only funding and technical platforms, but knowledge and expertise to support safe, responsible use of personalised health data.

If confidential human data is used in research projects, researchers have a special responsibility to protect it accordingly. Dealing with sensitive data on an individual level, including pseudonymized or anonymized data, requires special IT infrastructures and services, as well as awareness of data privacy, respective laws, ethical requirements and information security.

BioMedIT offers the whole package: it provides a platform to transfer, store, compute and analyse sensitive research data in compliance with Swiss regulations. The network offers:

• A secure and powerful IT environment accessible to researchers from all over Switzerland
• Data and (high performance) computing services, cloud technology, remote access and collaborative analyses
• An established network connected to various Swiss data providers, with end-to-end encrypted data transfers
• Data protection by design: organizational and technical security measures to guarantee confidentiality, integrity, availability and resilience of the systems

Beyond the issues of security and privacy, health data poses other challenges in its use for research and clinical support. Health data is very diverse in how it is collected, coded and stored, across the many hospitals and research organisations which hold it. This makes combining and mobilising data for a specific piece of research challenging, as there are a lack of common standards and approaches in all aspects of health data.

SPHN and BioMedIT work to promote common standards in health data, and beyond this to build a semantic web framework for FAIR data. Building on existing national and international terminologies and standards, this supports research with personalised health data as well as promoting better practices in data collection and storage across the sector.

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