Including citizens in political choices related to health innovation 

As highlighted by President von der Leyen in her State of the Union speech and by the Draghi and Niinistö reports, Europe must strengthen its security and competitiveness in the rapidly changing world. Health innovation is intrinsically interconnected with these objectives.

Public trust is crucial when making political choices related to health innovation.

For example, it is essential that citizens are involved in and can voice their opinion about legislative reforms involving their health data. The European Health Data Space regulation will impose obligations on authorities to make information on the use of health data for secondary purposes publicly available. In addition, the Regulation gives citizens the right to prohibit (opt-out) the use of their health data.

Citizens’ right to make choices concerning the use of their health data is also linked to their right to better treatment. Health innovations can assist in preventive health care and in the identification of risk factors. Citizens should have sufficient information on how health innovations can benefit them in the form of better care or medicines.

Data protection and security, as well as citizens’ rights, should always be safeguarded in development projects or legislative amendments related to health innovation, including in their preparatory phase.

There is still much to learn in this area, for example by sharing best models for inclusive design and testing of digital and AI driven health services. Finland has an ageing population and long distances to services. Therefore, we can benefit from innovative models of care. We have successfully motivated citizens to participate in the co-creation and implementation of health innovations as long as there are concrete benefits from them. Open and transparent communication by the authorities on the way health data is being used contributes to public trust.

Out of the 5,5 million population, there are 3,6 million users of the digital services that utilize comprehensive health and social data (stored in Kanta). This is among the most trusted digital services in the country.

Trust is built over time and every day. Strong basic education as well as trust in society, authorities and science are the building blocks for a well-functioning dialogue on health innovation. The health care sector is one of the essential functions of the society but due to the sensitive nature of the data, it unfortunately faces risks of cyber attacks. It is critical to ensure cyber security to maintain public trust.

Inclusive innovation thrives in a strong research, development and innovation environment. A cross-sectoral and patient-centered approach is needed to increase access to health innovations and to boost European competitiveness. The comprehensive approach taken by the European life science strategy marks a right step in this area. The upcoming biotech act is a possibility to translate many of its objectives into action.

The strengthening of clinical trial frameworks and improving the use of health data and artificial intelligence are essential goals. Through participation in clinical trials, patients can access new treatments at an early stage. This is particularly important for diseases that cannot effectively be treated by existing treatments.

Clinical trials require an environment with predictability and stability for both public and private actors. Requirements from legislation and approval processes should not become too burdensome. At the same time, the safety and reliability of clinical trials cannot be compromised. Fundamental rights of the individuals must always be respected. For example, when it comes to clinical trials, the process must ensure legal protection and appeal possibilities.

Research ethics and safety principles and practices are critical to advancing life science research. It is also important to strengthen science education and lifelong learning. A functioning Single Market for skills mobility can benefit the entire life-science sector.

Globally women represent 51% of the population. Only about 1% of healthcare research and innovation is focused on female-specific conditions other than oncology. We should work more to close the gender gap in health innovation and seek to contribute to women’s health more broadly.

In Finland we have invested in health research, development and innovation. As a part of our RDI Growth Programme for Health and Wellbeing, we are reshaping our legislation on medical research and health data use.

Finland has invested in the creation of an enabling environment for innovation. We are proud of our industry’s expertise in health technology, data analytics and engineering.

Looking forward, the inclusion of citizens in health innovation becomes ever more important as we aim to unlock the possibilities of new technologies. Decisions regarding the prevention and treatment of diseases will be increasingly based on the individual’s genetic makeup. This is at the centre of the 1 Million Genome project at the European level. Finns are genetically relatively homogenous. This provides opportunities to combine genomic and health data.

Our personalized public health project aims to promote health and wellbeing through research, new technologies and information.

With the focus on public trust and inclusiveness, we aim to enable digital transformation in health care and also create public demand for it. With a truly inclusive approach, we can significantly strengthen public health and contribute to European security and competitiveness.