This is an excerpt from the Nordic Health 2030 Magazine.
Spotlight on Finland
The Copenhagen Institute for Futures Studies interviewed three Finnish data experts who participated in the Nordic Health 2030 workshop series about their work and what health data means for people in the Nordics.
Dr. Minna Hendolin, Senior Director for Health and Wellbeing at Business Finland and a member of the World Economic Forum Expert Network on the Future of Healthcare as an expert in healthcare and precision medicine.
Jaana Sinipuro, Project Director at Sitra, the Finnish Innovation Fund and Steering Group Member of MyData Global working to empower individuals by improving their right to self-determination regarding personal data.
Dr. Maritta Perälä-Heape, PhD., Director at Centre for Health and Technology, University of Oulu, and laid the foundations for the MyData movement through the Digital Health Revolution programme.
What do the recent Finnish regulations in secondary use of health care data mean for individuals?
Maritta: Good question! The new Act on the Secondary Use of Health and Social Data opens the use of social and health data from only research and statistics to also include management, development, innovation and education.
Minna: Yes, this regulation establishes FinData, a one-stop shop for the secondary use of social and health data that starts operating at the beginning of 2020. It will create a stronger knowledge base that relies on data, and facilitates research and development for better social and healthcare services through smoother service pathways, new drugs, improved treatments and trust. The new regulation implements the GDPR (the EU’s General Data Protection Regulation) in Finland. It is one of the first implementations of the GDPR for the secondary use of data in Europe.
Jaana: Finns are quite positive about the use of their data for scientific research, and new legislation will streamline research practices and ensure that it is used in a safe environment. Individuals benefit from research in many ways – evidence-based care is one example. The health and social care service providers can measure outcomes much more precisely and therefore enhance service quality. Patients also receive better care through access to novel drugs, which perhaps can be brought to markets faster with the use of real- world evidence. Individuals will be assured greater transparency and security of their personal data, and society benefits when there are new methods of estimating effectiveness of new medicines.
How can we make sure that technology and data serve the purposes of individuals?
Jaana: I think this is both a concrete and philosophical question. By integrating lifestyle and wellbeing data into your health status, it is easier for individuals to take an active role for their own health. Still, for novel data like genetics, we need to be careful when returning data back to individuals. It is important that we do not cause unnecessary concerns about their health, and in that sense, the role of professionals as data interpreters is changing. On a more philosophical note, technology can be considered neutral, and responsibility for its appropriate use must be at the systemic level and based on common values. The system needs to ensure that less capable people also have access to the latest benefits from technology and data.
Minna: I have two good Finnish examples for preventive and holistic approaches to health. Neosmart Health uses a wide range of scanning, mapping and measuring methods of the body’s functions to gain a holistic view of health risks and opportunities. Through gathered data and artificial intelligence, their medical experts provide insights on how to optimise performance and reach one’s full potential. Also, Buddy Healthcare reduces the administrative burden and improves patient experience and outcomes. It is a mobile care coordination platform that automates and digitises pre-and post-surgery care pathways and performs care-related education.
Maritta: I think we can ensure that technology and data serve the individual by creating MyData-based services and technical infrastructures to support dynamic consent management, as well as by making data actionable with tailor-made services for individuals. Interoperability of IT systems will be crucial in order to fulfil integration and coordination of health and social services. Planning and execution of integrated care models is not possible without access to health and social information as widely as each individual case requires. The most likely way to organise all the interoperability needs in the society is through the personal databases, which are all controlled by citizens through their personal data accounts. Publicly available information and comparisons are fundamental requirements for choice and competition. Without adequate and reliable information on quality, individuals are restricted in exercising their freedom-of-choice of treatment or provider.
Jaana: The IHAN project tries to build a self-regulated ecosystem focused on data sharing with transparent rules and consent- based data sharing controlled by individuals. We’re also investigating whether a "Fair Data Label” could be an option for those companies who want to be seen as fair and transparent. We are hoping to create an open ecosystem of companies that are respecting individual rights in their personal data usage companies who are seeing the GDPR as an opportunity, not as a sanctioning tool.