In this question and answer interview, Liisa Maria Voipio-Pulkki, at the Finnish Ministry of Social Affairs and Health, shares her thoughts on health research and genomic data in Finland
In this in-depth interview, Liisa Maria Voipio-Pulkki, Director General of Strategic Affairs and Chief Medical Officer at the Finnish Ministry of Social Affairs and Health, tells us about the health research landscape in Finland, as well as genomic data and her future priorities. We also discover the Ministry’s thoughts on the direction of the European Union’s (EU) next research and innovation framework, Horizon Europe, with additional comment from Antti Hautaniemi, Senior Specialist, Senior Specialist at the Management Support Unit of the Ministry of Social Affairs and Health in Finland.
This extensive interview also reveals more about Liisa Maria Voipio-Pulkki’s own role and her future priorities. She also explains her thoughts on the recent Act on the Secondary Use of Health and Social Data and its purpose to make the use of the data smooth and more secure. On the subject of data, we learn about the study concerning attitudes to the use of genomic data in research and healthcare.
In April 2019, Finland had national elections and at the time of this interview during May, the new Ministers are yet to be sworn in after which the implementation plan of the new political programme will be drafted. This is perhaps, therefore, an opportune time to look back at some of the contributions featured in Open Access Government from Minister of Social Affairs and Health in Finland, Pirkko Mattila, as background material to the interview.
In her most recent piece, Pirkko Mattila, discussed how The Economy of Wellbeing is a means of taking a holistic approach to tackle future challenges. In an earlier piece, the Minister reflected on the future priorities of the healthcare sector in Finland. I can also recommend her article from late 2017, where she explains how she aims to reduce the burden of non-communicable diseases in Finland.
Where do you see the health research landscape heading in the future?
I see a good future for the health research landscape in Finland, mainly because biomedical science has never had so many powerful tools to hand! Also, because the scientific community’s work is much more open to public review and ethical discussion than it used to be. And we have evidence that research can make the world a better place to live in and help people to prevent and overcome health and wellbeing problems.
Of course, there are also challenges and warning signs but also emerging solutions to them. I’d like to mention only two: data safety and security are of utmost importance in the era of data-intensive research and artificial intelligence (AI). In Finland, we think that people´s trust can be maintained by combining a solid legal basis with up-to-date ICT solutions. We better get prepared as authorities and care providers to this data-driven world which will definitely also affect the way clinical research is designed and reported.
Second, there is increasing competition for limited research resources and we need to justify why health research still is worth funding. There are questions like how to set research priorities without killing academic curiosity and freedom, or should we invest more in neglected health challenges globally?
And finally, it is a joint responsibility of the scientific community and the health systems to find sustainable ways to adopt innovations in our everyday practice. I think that it is the last point that we have not thought over enough. It is a tough question and there is no solution that would fit all, but the ability to find sustainable adoption mechanisms will be crucial to the health research field in the years to come.
Tell us about your own role as Director General of Strategic Affairs and Chief Medical Officer at the Finnish Ministry of Social Affairs and Health and what your future priorities are?
Finland had national elections in April and right now our main task is to provide background information for the new government’s programme. As soon as the ministers are sworn in, we’ll concentrate on drafting the implementation plan of the new political programme. It is always a very exciting exercise! We know that the Finnish social and healthcare system needs to be reformed in order to improve its sustainability, resilience and responsiveness.
We’ll see how the new regime wants the reform to be shaped but we can say that a major change towards a more centralised governance model is on the way.
Second, we are just about to start our EU council presidency and we are currently finalising the overarching themes and official meeting agendas. For example, we’ll invite both chief medical, nursing, dental and pharmaceutical officers to a joint meeting in Helsinki in late September. As far as we know, this is the first time when they all come together to share experiences and learn from each other. The EU council presidency is very important to us because Finland is a small country and very dependent on trade, international institutions and the rule of law. And to be quite honest, a major part of the day-to-day work is to keep the ministry’s machinery up and running! There is so much work to be done that does not hit the headlines but causes trouble if not managed on time.
What are your thoughts on the recent Act on the Secondary Use of Health and Social Data and its purpose to make the use of the data smooth and more secure?
The Act was discussed for one and a half years in the Parliament before it was finally passed during the last few days of their term. This illustrates how critical it was to our R&D policy and data-based health and social system governance to get the Act accepted and at the same time how tricky it was to write the legislation to be fully compatible with the GDPR. The key issue was how to ensure that all data handling is safe and secure and how to get all relevant authorities involved so that the Act would really become a changemaker.
Now that we have the new legislation, we’ll finally see the long-time dream of a one-stop-shop to our unique databases come true. The new data permit authority will be operational in 2020 and the service operator which will provide data handling and analysis services will follow in the next few years. In practice, this means less bureaucracy and shorter and predictable handling times for all customers. They can also provide evidence to third parties that the data they have used has been treated properly by an independent and trustworthy authority.
Importantly, the new service will be made available also to foreign researchers, institutions and companies. We expect it to become a major boosted for data-intensive research, innovation, education and public policy planning.
On the subject of data, can you also outline your thoughts on the study concerning attitudes to the use of genomic data in research and healthcare?
There are many studies addressing this question, with quite differing results and conclusions. I can only comment on the situation in Finland as we have investigated people’s attitudes during the preparation of our new genome law. The big picture is that people do trust the academic and health care institutions and generally support the use of genomic data in research and medical care. However, they feel significantly less secure if the data is taken outside the country to serve commercial purposes.
This shows how important it is to be transparent and precise in all the information we give to study subjects and clinical patients. It is also hugely important that our healthcare professionals are well prepared to answer this kind of questions.
Is there anything you would like to add?
Many thanks for arranging the opportunity to a wide set of stakeholders to meet and discuss these fascinating topics!
Liisa Maria Voipio-Pulkki
Director General of Strategic Affairs and Chief Medical Officer
The Finnish Ministry of Social Affairs and Health
Tel: +358 295 16001
kirjaamo@stm.fi
https://stm.fi/en/frontpage
https://twitter.com/msah_news
Horizon Europe: Challenges and opportunities in the health sector
In this special piece of bonus content, Antti Hautaniemi, Senior Specialist at the Management Support Unit of the Ministry of Social Affairs and Health in Finland, shares her thoughts on the direction that Horizon Europe is taking and what this means for the health sector
I am pleased to recognise that the Horizon Europe, with an estimated budget of €97.6 billion, is the biggest ever research and innovation funding programme and will allow EU to tackle the global challenges of our time and contribute to achieving the Sustainable Development Goals. It is of utmost importance that health remains as its own cluster and that it is secured sufficient investments.
As we know, the global challenges and opportunities in the health sector are not only important for the citizens but also for the sustainable economic growth of Europe. As the Strategic Programme for the Horizon Europe is taking form, we need to look forward and place Europe in the frontline of health research and ensure that the activities under Health Cluster enable ambition and motivation in the research community. We need solid funding for basic biomedical research, translational research as well as R&I investments in public health and health systems research.
The data-driven health research is one of the cross-cutting issues in the Programme. European-level health data utilisation for research and innovation purposes is still in its infancy. The European action plan aims, for example, to support data sharing, secure access and cross-border exchange of health datasets, pilot actions and data pooling across the EU. Large-scale, cross-border and multisectoral research combining comprehensive and validated health data including register data, personal health records, biobank and genome data would open vast opportunities for Europe.
Also, as we know, the European health systems face growing common challenges: an ageing population and continuous financial pressures call for innovative solutions on how to organise health care in an equitable and efficient manner. There is, therefore, an urgent need to bring innovation and research evidence, to identify more effective and sustainable ways to organise, manage, finance and deliver high- quality care to European citizens.
The results of the rapidly progressing biomedical research, discoveries in etiology and therapies, personalised approaches, pharmacological products and other innovations cannot have full impact in advancing population health without also high-level research on how to implement them on a system level.
Antti Hautaniemi
Senior Specialist
Management Support Unit
Ministry of Social Affairs and Health