SciLifeLab Voices: Sevim Barbasso Helmers
Sevim, you are coordinating national and EU projects focusing on digital health, tell us more!
My role at SciLifelab is to lead and coordinate the Vinnova-financed collaboration project called DIGIfor1healthSE. DIGIforhealthSE is about contributing to the digital infrastructure of health data both nationally and within the EU. This collaboration project consists of the following digital projects: Genomic Data Infrastructure (GDI), European Federation for Cancer Images (EUCAIM), European Digital Innovation Hub: Health Data Sweden (EDIH HDS) and Testing and Experimentation Facility “Health” (TEF-Health). Together with Genomic Medicine Sweden (GMS) and SciLifeLab, the coordinating project links data-driven research with infrastructure and data management support.
What is the overall aim of the projects?
To increase synergies between the ongoing projects and together solve the issues that need to be addressed within the health data area in order to manage effective and sustainable access to and use of health data. And to contribute to the coordination between the state and regions to increase access to health data for excellent research, improved lifestyle and healthcare, precision medicine, strengthened Swedish competitiveness and attractiveness globally and support national development toward the introduction of the European health data space (EHDS).
In your opinion, where is the low-hanging fruit in digital health, and where are the main hurdles?
Health data is generated not only within healthcare facilities and within research in academia and industry, but also by the individual itself. It is fragmented in different health record systems, registries/databases and within single applications aimed for collecting health data. These are situated in all levels, i.e., individual, local, regional, national and international. Today, most of these systems are not compatible and the possibility to access and connect health data from different systems to each other is very limited. The main hurdles, I would say, are the legal issues and the semantic interoperability. The low-hanging fruit is to start somewhere and show that collaboration is fruitful even though it takes time and effort.
What do you believe are the most important steps to take forward during 2024?
Our most important step is to make this collaboration and its synergistic effects known. This means facilitating dialog and further cooperation with other actors (and there are many in all levels) within Sweden that work with the same questions as we do. The health data issues mentioned are not only Swedish issues, they are international issues. We need to work together to resolve them in a uniform manner. We just launched our DIGIfor1health website and in December we will publish our first report, stay tuned!
