Key learnings from the Finnish Model to Shape Future Services for Secondary Use of Health Data

Findata, the Finnish Social and Health Data Permit Authority, is strengthening the service infrastructure for the secondary use of health data, paving the way for Finland’s participation in the European Health Data Space (EHDS) infrastructure.

After five years of operation, Findata received funding from the European Union to further develop national services and to prepare for the EHDS. This effort is FinHITS – Strengthening Finnish Health Data IT for Secondary use, a four-year project aiming to refine Finland’s service infrastructure for health data utilization to better align with user needs and meet upcoming EHDS requirements.

FinHITS project’s key areas of focus include:

• Service Enhancement: Improving Findata’s core services, including the application portal, national dataset catalog, and secure processing environment.

• Data Quality Improvement: Starting data quality work in accordance with EHDS and preparing ready-made datasets to facilitate data access.

• HealthData@EU: Joining the centralized infrastructure for cross-border data use.

• Stakeholder Engagement and Training: Providing comprehensive guidance on the evolving landscape of data access processes and EHDS requirements for data users, holders, and Health Data Access Bodies (HDABs).

Collaboration: A Cornerstone of the Secondary Use Ecosystem

Five years in centralized service provision has underlined the essential role of collaboration in the secondary use of health data. Successful data use requires a well-orchestrated process involving data users, data holders, data permit authorities and secure processing environment providers.

Data holders play a critical role in the ecosystem and need adequate resources for providing and managing metadata descriptions, transferring data, and ensuring compliance. Tools like national dataset catalogue and application portal should support the work of data holders. Otherwise, the processes become time-consuming, resulting higher costs and significant delays.

Data users need detailed information about Finland’s health care system, the origins and availability of datasets, potential costs and practical guidance on submitting applications. Greater transparency and support empower users to make effective use of health data, contributing to societal benefits.

The more information there is available on the data and the smoother the data access process is, the easier is the work of the data permit authority and focus can be laid in the most important issues. One of the most time-consuming part of the data access is making sure data descriptions are accurate and data can be provided based on them.

To ensure user needs are fully integrated into service development, stakeholders are actively engaged throughout the FinHITS project. This is achieved through surveys, workshops, demos, and feedback sessions, ensuring that development towards EHDS aligns with user needs. This inclusive approach fosters trust and builds tools that meet real-world demands.

Streamlined Processes Require User-Friendly Tools

Findata’s efforts have already led to major improvements in application handling times, reducing waiting periods from months to days. These achievements highlight the importance of efficient tools and processes. Automated workflows and robust case management systems have been crucial to these improvements.

During the FinHITS project, Findata will further develop national dataset catalogue and support for data holders with metadata descriptions. One of the goals is to integrate National Dataset Catalogue to application portal to help data users in dataset descriptions and digitalize collaboration around data users’ data descriptions.

New service desk solutions as an appointment booking system and upcoming chatbot will hopefully save data users’ time in future for helping them in finding information more efficiently.

During FinHITS efficiency will also be provided in secure processing environment by studying ways to add capacity for data transfers and data handling in secure processing environments. Capacity is needed especially when datasets are large or advanced methods are used.

Is Finland Ready to Join the EHDS?

The short answer is: not yet, but it’s getting closer. While Finland’s model has been a benchmark for EHDS, national implementation is still underway. Integration into the centralized EHDS infrastructure requires additional efforts, including compliance with new responsibilities for HDABs, data holders, and users. These responsibilities include data quality management and reporting duties among other things.

The upcoming legislative changes also necessitate effective communication with citizens. Citizens need information on their rights and the benefits of research to make sure that the strong trust Finnish authorities have traditionally enjoyed will stay in the future.

By strengthening infrastructure, enhancing tools, and engaging stakeholders, Finland will be ready to join EHDS and contribute to a future where health data drives better research, innovation, and healthcare delivery across Europe.

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Get in touch with Findata

• Book an appointment: findata.fi/booking

• Send an e-mail: info@findata.fi

Findata - a Fingenious® Ecosystem Service Partner

The Fingenious® Ecosystem is a collaboration network in the field of health and biomedical research in Finland. Fingenious® Ecosystem supports you in your RWD/RWE by providing a single window into the Finnish service and data offering. Fingenious® Ecosystem Partners can help you tailor high-quality data permit applications, offer insight into longitudinal Finnish data sets, recognize the benefits that the Finnish legislation can offer, and much more. Explore the Fingenious® Ecosystem and discover new opportunities for your RWE research.