Over the last four months, B1MG project partners virtually visited three countries with well-established genomic medicine programmes: the UK, Estonia and Finland. The visits aimed to better understand how to implement genomic medicine in healthcare across Europe. They also promoted knowledge exchange with several 1+Million Genome Initiative (1+MG) member states taking the opportunity to present their progress.
Invaluable discussions on infrastructure requirements for genomics medicine, feedback loops between healthcare and research, and patient engagement were brought to the stage. Case studies and specific initiatives were also presented to highlight different ways of implementing genomics into healthcare systems.
In Autumn 2021, the project will issue a report and several policy briefs encompassing all the lessons, use cases and knowledge gathered during these three fruitful country visits.
The UK puts faith in working together – integrating research and healthcare
The first visit to the UK took place in March 2021. 71 participants were able to discover the genomic medicine programmes of England, Scotland, Wales and Northern Ireland.
Featuring prominent speakers, such as Prof Sir Mark Caulfield (Genomics England), participants discussed the required infrastructure for genomics medicine programmes, healthcare adoption and the importance of collaboration across Europe.
All speakers stressed the need for a learning healthcare system – an infinity feedback loop between evolving healthcare systems and genomic research. During the talks, capacity building was at the core of the UK's strategy. Focusing on tools and training requirements for staff, the UK aims to target the entire workforce, particularly nurses and midwives, as they represent a significant portion of the healthcare workforce.
The importance of placing patients at the core of initiatives was also highlighted as a critical aspect for establishing trust through transparency.
Estonia climbs to the top of the league on public engagement
In May, a visit to Estonia demonstrated the country’s well-established genomics medicine programme with exceptional public engagement successes.
With esteemed speakers, such as Prof Andres Metspalu (University of Tartu), attendees learnt that Estonia's well-established biobank has 20% of the population registered. Members of the government and other national institutions also depicted an excellent snapshot of Estonia's genomic landscape. For instance, electronic ID cards are offered to all Estonian residents for access to all healthcare services. Additionally, the country has implemented polygenic risk scores for cardiovascular disease and cancer in healthcare.
But most remarkably, Estonia has achieved 75% of public buy-in for personalised medicine. Patients expect their genomic data to be used for their benefit. This level of public engagement did not come quickly and effortlessly. The country has invested in a wide range of public communication campaigns to normalise genomics medicine – even using soap operas.
Finland is building an ecosystem for personalised medicine
Building ecosystems for personalised health lies at the core of the Finnish strategy. In June, the country visit emphasised that Finland is establishing several national genomics centres. Anni Kaukoranta (Ministry of Economic Affairs and Employment) and Tommi Nyrönen (ELIXIR Finland), amongst many other remarkable speakers, walked the audience through several use cases of ecosystem building, such as FinnGen.
The national government has also been an enabler, as several government members presented during the visit. Despite changes in administration, there has been steady provisioning of funding, legislation, capacity building and education.
Enabling legislation was also a key topic during the visit, as it has been vital for Finland's success in genomics. In 2015, the first genome strategy was published to establish a legal framework and provide equal access to personalised medicine. Over the last years, the country has continued working on this framework that culminated with the publication 'Regulating the unknown'.
Knowledge exchange with 1+MG member states
At every visit, several 1+MG member states presented their actions, progress and ambitions in the format of lightning talks. These short presentations included 12 different countries: Denmark, Lithuania, Bulgaria, Spain, Belgium, Portugal, Sweden, Latvia, Hungary, Germany, Norway and Italy.
ELIXIR coordinates the Beyond 1 Million Genomes (B1MG) project. It provides coordination and support to the 1+ Million Genomes initiative (1+MG), based upon the commitment of 23 European countries that have signed the Declaration ‘Towards access to at least 1 million sequenced genomes in the EU by 2022’.
The B1MG project is funded by European Union's Horizon 2020 Research and Innovation Programme under grant agreement No. 951724.