Genomics is the study of the genome, which is the complete set of DNA in an organism. In 2000, the Estonian government declared internet access to be a human right. The Estonian government has integrated technology into the fabrics of society and advancing genomics over the last 17 years. Andres Metspalu, MD, PhD professor at the University of Tartu explains the “big picture” approach to healthcare, data, genomics, and rights of the local population to access health technology. In Estonia, medical genomics covers biobank, ehealth, micoarry analysis (used to study the extent to which certain genes are turned on or off in cells and tissues) and genomic sequencing.
YouTube → National Human Genome Research Institute, “The Estonian Approach: Personal Medicine in 2014-2020 – Andres Metspalu”
The Big Architectural Picture
The umbrella overview of how technological is part of everyday life with a foundation of trust a young government and where children feel coding is “cool”. In Estonia, since 2012 it is mandatory to teach programming and robotics to children. The group of departments that share data and information: the state medication agency, healthcare boards, population registry, business registry, hospitals, physician practices, pharmacies, school nursing, emergency departments, patient portals, the national health information system, prescription centers and X-Road.
Interoperability and Cybersecurity: The Only Path Forward
The long divisive question of “whose data is this” does not exist in Estonia. “Without question, it is always the Estonian citizen who owns his or her data and retains the right to control access to that data.” Cybersecurity is top priority, no record of any misuse of patient data has occurred in the last 14 years and Estonia is the headquarters for NATO Cooperative Cyber Defense Centre of Excellence.
Estonia even shares data with its neighbor Finland where both countries’ citizens can receive their prescriptions refills in either country. Every Estonian citizen carries a smart ID and mobile card to access healthcare, banking, and any governmental institutions.
The University of Tartu heads the Estonia BioBank where genomic data has been collected on 52,000 participants which is about 5% of the adult population of Estonia. “The entire project is conducted according to the legislation given in the Human Genes Research Act of Estonia and all participants (gene donors) have signed the broad inform consent (Metspalu 2004, Drug Dev Res).” The public opinion and awareness of the BioBank and favorably was at 67% from the period of 2001-2013.
Precision Medicine Program
In 2013, Estonia implemented a digital health literacy education for healthcare professionals and patients. The clinical decision support guides clinicians through the course of treatment based on genomics, computerized alerts, clinical guidelines, and order sets. The clinical professionals also use evidence base medicine, research, and quality as part of standard treatment.
Estonia has long crossed the bridge of ehealth and electronic medical records while some countries are still tackling how to move from paper to digital solutions due to economics, trust, legacy systems or cultural factors. The European Union Presidency has officially changed from Malta to Estonia as of June 1, 2017. Estonia is ready to share best practices and lessons learned in health technology.
In Estonia, a country with a population of just over 1.3 million citizens, a genomic biobank within a local university has been created, data is exchanged with a neighboring country, internet access is a human right and citizens own their own data. On October 16-18, 2017 eHealth Tallinn is an opportunity time to come see the future and witness genomics as part of daily healthcare in a citizen driven digital society.