The Swiss Personalized Health Network (SPHN) and its partner initiative Personalized Health and Related Technologies (PHRT) from the ETH Domain have reached a major milestone for the National Data Streams (NDS): the establishment of contractual framework conditions between multiple institutions. They clarify the use of sensitive data within the planned research projects and – foremost – enable data re-use by third parties.
In 2022, SPHN and PHRT launched 4 NDS, each comprising a multidisciplinary consortium investing in the development of sustainable data infrastructures for personalized health research in a given area. Besides generating scientific output, NDS will foremost enable the reuse of curated high-quality datasets. This is an important prerequisite for access to research data according to the FAIR principles.
To comply with the strict legal requirements and public expectations regarding data protection, ethics committees and data-providing institutions demand a clear assignment of responsibility and liability when sharing sensitive data. It is thus particularly challenging to set up a framework that enables researchers outside of a project consortium – so-called third parties – to reuse the data for new projects.
By the end of June 2023, the contracts for the NDS LUCID and SwissPedHealth were finalized and signed by all partners. They are now able to exchange and analyze data with a view to further sharing in the future. Notwithstanding this achievement, the process of creating such contractual frameworks must become more efficient. This is the task of the new SPHN Data Governance Working Group: to find a consensus on recurring data governance issues and to develop an overarching legal framework for third-party use of sensitive data – with harmonized processes and templates endorsed by all involved institutions and in line with national and international standards.
The SPHN Data Governance Group and the frameworks now put in place lay the foundations to further develop the NDS into growing data-rich research platforms. This benefits the next generation of researchers and clinicians and is an added value for Switzerland on its way to FAIR and open research data.