HEALTH DATA 2030
Our project creates solutions, draws up fair rules and builds a bridge for the cross-border use of health data in Europe, and supports the competitiveness of the Finnish health sector.
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What is it about?
Tackling the complex problems of a rapidly changing world requires increasingly versatile co-operation. For example, the covid-19 crisis has highlighted the importance of European cooperation and data sharing. Trust in the use of data between countries requires transparency, functional frameworks and joint regulation.
The European Health Data Space as outlined in the EU data strategy promotes the development of health systems, and the availability, efficiency and sustainability of services. Research and innovation also benefit from improved access to data.
We must create common rules, operating models and solutions for the cross-border use of health data Health data Health data is ‘data concerning health’ means personal data related to the physical or mental health of a person, including the provision of health care services, which reveal information about his or her health status. Open term page Health data that respect people’s right to privacy. The Health data 2030 project implements the strategic objectives of the Fair data economy theme, launched in January 2021, from the perspective of the use of health data.
Finland is a pioneer in the use of health data in the EU. One objective of the project is to ensure that Finnish companies benefit from digitalisation developments and the data economy and that we can seize the opportunities of the growing EU internal market.
The Health data 2030 project continues our previous projects for boosting data economy: Isaacus project prepared the rules for secondary use of health information Secondary use of health and social data The secondary use of health and social data means that the customer and register data created during health and social service sector activities will be used for purposes other than the primary reason for which they were originally saved. The secondary uses referred to in the Act in Finland include: scientific research, statistics, development and innovation activities, steering and supervision of authorities, planning and reporting duties by authorities, teaching, knowledge management. Open term page Secondary use of health and social data in Finland. Now Findata, grants permits for the secondary use of data, improves data security and promotes the data protection of citizens. The IHAN project paved the way for a fair data economy Fair data economy The part of the economy that focuses on creating services and data-based products in an ethical manner. Fairness means that the rights of individuals are protected and the needs of all stakeholders are taken into account in a data economy. Open term page Fair data economy and developed practical tools, such as the rulebook, and rules for companies and other organisations using data. In the future, individuals’ own data MyData The term MyData refers to: 1) a new approach, a paradigm shift in personal data management and processing that seeks to transform the current organisation-centric system to a human-centric system; 2) personal data as a resource that the individual can access and control. Personal data that is not under the respective individual’s own control cannot be called MyData. Open term page MyData will be an important addition as we move towards individual-oriented healthcare and welfare services.
What do we do?
First, the focus is on creating a snapshot with stakeholders, through interviews, workshops and surveys. We want to promote the use of health data with ambition in Finland. Building on the snapshot, we will launch trial projects to drive change. We are also going to create a long-term strategy that challenges our society to reform.
Finland is part of the EU common market. However, we will not be able to take full advantage of the benefits of the data economy if the EU is not competitive. We are co-ordinating the EU’s Joint Action Towards the European Health Data Space (TEHDAS) to create common rules for the secondary use of health data.
By being involved at the heart of development, we make a favourable contribution to the rules and boost the competitiveness of Finnish companies as the predictability of the operating environment increases.
In the development of digitalisation and the data economy, we must ensure that individual rights are fulfilled and people become empowered to use their own data.
The aim of the project is to ensure Finland’s active role in sustainable digitalisation development. Sustainable digitalisation is associated with the development of a European single market for data as defined in the European data strategy and the ethical use of artificial intelligence as a driver of data-based services.
Where are we at?
The project was launched in autumn 2020 and will finish at the end of 2023.
In the early phase of the project, we published a series of working papers in order to clarify the situation in this field. These working papers covered issues such as the opportunities offered by data-driven ecosystems, digital therapies, new ways of conducting medical trials and the measures required for growth and competitiveness in the health sector. A vision, 10 recommendations and a governance model were developed to speed up growth of the entire health sector. The publications provide resources for healthcare decision-makers, implementors and developers. The working papers are available mainly in Finnish including a summary in English.
We launched three funding calls based on the studies and selected 13 pilot projects for implementation. Six of the pilots focus on experimenting with digital therapies as part of everyday healthcare. Four promote the use of data economy tools in health sector ecosystems. Three support the preparation of decentralised drug trials. The projects are scheduled to end by summer 2023.
Alongside the public funding calls, we have launched selected projects following discussions with stakeholders.
We are studying the impact of regional reform and roadblocks for implementing drug trials in the Hospital District of Helsinki and Uusimaa (HUS). Our aim is to identify solutions that would make drug trials run more smoothly in the wellbeing services county. The outputs will also be available to other wellbeing services counties.
We are promoting Finland’s role as a participant to a European network that collects high-quality, real-time data on databases for authorities’ research purposes. We are supporting Auria Clinical Informatics of the Hospital District of Southwest Finland in participating in the European Union DARWIN (Data Analysis and Real-World Interrogation Network) project. Auria Clinical Informatics responds to the European Medicines Agency’s research requests to the DARWIN network in line with the OMOP (Observational Medical Outcomes Partnership) model. Auria Clinical Informatics’ technical and administrative competencies for responding to the research requests quickly and with high quality are also being developed.
The DARWIN network aims to start making use of the European health data space (EHDS), which we are promoting through the TEHDAS Joint Action project.
We are participating in the development of EU health policy and promote the creation of a European health data space in the framework of the 25-country TEHDAS Joint Action project. This has produced recommendations for the European Commission and member states to enable the cross-border use and quality assurance of health data, among other things. Recommendations have also been made on the technical services required for the EU-wide secondary use of health data. The aim is to ensure that data collected in EU countries can be combined and used securely for research, innovation and decision-making.
Human well-being and the state of the environment are closely interdependent. The concept of planetary health or One Health is now being used. We aim to identify the concrete actions that the European Commission and member states have planned to promote planetary health. We also aim to raise awareness of the issue and identify and disseminate good practices across sectors.
Who is taking part?
European well-being is being built in co-operation with a wide range of international stakeholders. In addition to the public and third sectors, businesses and research and development organisations are also involved.