In many European countries digital health data already exists, together with the expectations of patients and health professionals for the development of e-health services and the legislation that supports the safe use of health data, says the report 'Mapping out the obstacles of free movement of electronic health records in the EU in the light of the single digital market'. The report shows that necessary preconditions for seamless and safe movement of health data across the borders of Member States exist in the EU.
The study mapped the obstacles as well as enablers of movement of health data, including expectations of the population and the patients’ possibilities of using their own health data in Finland, Sweden, Germany, Poland, the United Kingdom and across the borders of Member States. Also, proposals were made to overcome the obstacles.
“The basic premise - digital health records - exist in Estonia as well as in the European Union. Now, that electronic health data exists, we have to focus on developing services that would benefit people, public services as well as private,” said Juta Saarevet from KPMG Baltics. “The more services there are, the more these services are used and the better will be the quality of the data and the more we can develop better services.”
Still, according to Saarevet the accessibility of electronic health records and data portability should be improved. "Attention must be paid to the modernisation of the legal framework, as well as the creation of infrastructure that supports secure data exchange and portability. If we wish the EU single market to work for e-health solutions, we need a common, clear and simple set of rules for the creation, use and dissemination of e-health solutions."
Peoples’ attitudes towards data protection and privacy are different in Europe. While patients in Estonia, Finland and Sweden are not significantly concerned about the use of their data, in Poland and Germany 20-40% of patients consider it an important point of concern and in the UK up to 60%.
The report concludes that the main barriers to free movement of health data are not information technology or legislation, but rather so-called soft aspects such as people's attitudes, awareness and cooperation.
The head of the Estonian Society of Family Doctors Diana Ingerainen says that an important premise for the development of e-health is also the necessary change in the way doctors think. “We should acknowledge that medical workers are only users of the data and patient is the owner. Instead of keeping the data inside medical facilities, we should give the data to people in a language they understand, to enable them to participate actively in the treatment process.”
The study shows that health data is already moving between member states in Europe, but in most cases, the patient takes them along on paper. The survey points out that although many countries have regulated and enabled also the secondary use of data, for example in statistics, research or for the development of health services, they are still used a little.
"If we expect citizens to take better control of their own health and our health systems to respond more precisely to our patients’ individual needs we must enhance the citizens’ control of their health data and empower them to use it for their own benefit. We must acknowledge that privacy is an important issue, but that does not mean we should secure date from its use, but find ways to use it securely,“ says Ain Aaviksoo, the Deputy Secretary General on e-Services Development and Innovation of the Ministry of Social Affairs. "We need to agree on how, what and when to do with data in healthcare, including exchange between providers within but increasingly between different countries.“
Supporting the principles of the digital single market, free movement of personal data and digital innovation to support healthcare is one of the priorities during the Estonian Presidency of the Council of the EU. "Our goal is to reach an agreement on the Council of the EU conclusions that give states broad policy guidelines for the e-health policy and planning for the coming years, in order to accelerate and expand the use of health data across borders," said Aaviksoo. "In addition, we hope to agree on 7-9 joint large-impact digital project commitments that would be carried out and funded by the member states in cooperation with the European Commission."
The report 'Mapping out the obstacles of free movement of electronic health records in the EU in the light of the single digital market' was commissioned by the Government Office of Estonia. It was funded by the Operational Programme for Cohesion Policy Funds 2014-2020. The study was initiated and conducted in cooperation with the Estonian Ministry of Social Affairs.