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One out of approximately 9,000 children in Latvia suffers from spinal muscular atrophy. The neuromuscular disease gradually destroys motor neurons, leading to difficulty sitting, getting up, breathing and eating. The sooner the disease is "caught", the higher the expectations of the child to live as fully as possible. This summer, Children's Clinical University Hospital (CCUH) started treatment for a 17-days-old baby who was diagnosed with this genetically inherited disease in a pilot study of newborn screening conducted jointly by the hospital and the Scientific Laboratory of Molecular Genetics of Rīga Stradiņš University (RSU). This is not only the first case in Latvia when spinal muscular atrophy has been diagnosed and treatment has been started already in the presymptomatic stage, but also a direct example of how medicine is changing from therapeutic to largely preventive.

The digitalisation of the health sector is essential to this process, shortening the time from research in this field to helping a specific patient.

Patients, current and prospective doctors and nurses, as well as scientists would benefit from the digitisation of health sector processes. One of the industry's flagships – RSU – sees progress in the national digital health strategy, says RSU Vice-Rector for Science Agrita Kiopa and social anthropologist, local consultant of the World Health Organisation (WHO) in Latvia Mārtiņš Daugulis.

The digital present, not the future

The example with the baby is a good illustration of the development of personalised, genetic-based medicine. Each of us has our own unique genetic and molecular profile that makes us susceptible to certain diseases. Knowing this genetic profile, physicians can make more timely and accurate decisions, which in turn prolongs our lives,’ emphasises RSU Vice-Rector for Science. However, this requires accessible, interoperable and complementary data, which is a particularly sensitive issue in the field of health care, as this data belongs to the individual himself. ‘In order to open up such data to studies and research, as well as to combine them with the data obtained in research, clear regulation and procedures are needed. Unfortunately, there is no such regulation in Latvia yet,’ so Kiopa.

agrita_kiopa_martins_daugulis.jpgWe are digitising not because it is modern, but because it will bring real benefits to doctors, patients and scientists – so RSU Vice-Rector for Science Agrita Kiopa and political scientist, social anthropologist and WHO local consultant in Latvia at digital think tanks Mārtiņš Daugulis explained the central idea of the national digitalisation strategy.

The Vice-Rector also emphasises the positive development that is taking place under RSU’s wing. Two open access repositories related to the European Open Science Cloud have been created, a bioinformatics unit is operating at the university, which is gradually growing with the involvement of students, and this year a new study programme in English Biostatistics will be launched. ‘We are also pleased about other events that are making us more prepared for the digital health care system, which is basically already knocking on the door. Digital and Visual Technology Centre is being created at the RSU Institute of Stomatology, which is part of the consortium of the Baltic Biomaterials Centre of Excellence established in the Horizon 2020 Teaming programme. Our teaching staff take the opportunity to participate in exchanges, going to the USA, University at Buffalo under EU funding programmes to learn about IT integration in higher education, and there are many other great examples,’ says the Vice-Rector for Science, emphasising that further digitisation of health care sector and health-related education requires serious public investment and political will.

Farmstead thinking

Mārtiņš Daugulis, whose name has so far been mentioned more in the connection with political science, is also convinced that the health care sector developed in the e-environment will be of enormous benefit for both patients and health care professionals, as well as researchers, promoting the overall efficiency of the sector. In addition to political science, Daugulis has 'dived into' social anthropology, which is the reason for being invited as a member of the WHO focus group for the first time. Now the cooperation has grown to the next level – Daugulis is working on the issue of the national digital health strategy as a local WHO consultant in Latvia, at the same time leading the RSU Department of Political Science.

Throughout the spring, Daugulis together with a team from the Ministry of Health, developed discussions in think tanks and focus groups between all the parties involved – medical institutions, universities, scientific institutes, medical associations, patients' associations and, of course, public administration.

‘In order to make any progress, everyone has to sit at the same table. Now it is just the right time for that – the pandemic has contributed to digitisation in all areas, furthermore, around this time Latvia is approaching the deadline for many policy-making documents, which means that we can include digitalisation issues into the new planning documents, and make them more unified,’ says Daugulis.

The central idea, as emphasised the WHO representative, is that digital health should be seen as an ecosystem with different levels of authorisation, so that data can be accessible for doctors, the patient himself and scientists as well. As with COVID-19 vaccination, the greatest inertia in the development of a national digital health strategy comes from the older, less educated parts of the society and the people living in rural areas, away from the bigger towns. The way of thinking that is typical of the Latvian farmer is an obstacle, emphasises Daugulis, although now there is a national recognition that there must exist a single governance model, not every organisation's own.

No more borders

‘In general, mostly no one likes changes, so it must be actively explained that digitisation is a process that will bear fruit to doctors, patients and scientists,’ said Daugulis, while pointing out that there are already a number of good examples in Latvia, such as CCUH as ‘their digital ecosystem is conjunct with the patient's experience, from the moment entering the hospital to the moment leaving it’.

Vice-Rector Kiopa adds that universities play an important role in this process.

‘An important factor are students whose education needs to focus on digital development – whether development of basic IT skills, 3D printing, genetic data analysis or research skills of other narrow niche. We need to grow muscles in this area in Latvia, because we are a small country that has to do as much as the big players, says Kiopa.

During the past months, when going into detail on the digitalisation of health sector at the European level, Daugulis discovers that Latvia is not too far behind, nor does it stand out among other Member States. However, it is especially important not to stop and continue to digitise Latvian health care system, at the same time deeply integrating it into European databases. ‘In this respect, no borders longer exist on the map, Europe as a whole is a single system, and we must be a well-integrated part of it as well. For example, the new Latvian oncology plan must be connected with the European Network of Cancer Registries, otherwise we will fall behind the other Member States in the quality of services and treatments,’ concludes Daugulis.