In May 2017, the European Commission presented the Mid-term review of the Digital Single Market Strategy. It identified three main pillars in the area of digital health and care:
- Citizens' secure access to electronic health records and the possibility to share it across borders and the use of e-prescriptions;
- Supporting data infrastructure;
- Facilitating feedback and interaction between patients and healthcare providers.
To address these issues, an open public consultation on Transformation of Health and Care in the Digital Single Market was launched, which ran from 20 July 2017 to 12 October 2017.
1464 responses were received from across the 28 EU Member States and 7 other countries.
There was strong support for actions that enable citizens to have access to and use health related data across borders. Over 93% of respondents believe that "Citizens should be able to manage their own health data" and 81% of respondents believe that "sharing of health data could be beneficial to improve treatment, diagnosis and prevention of diseases across the EU".
The main purposes for which respondents consider that their health data could be made available are:
- Progressing research and innovation (73.4%)
- For their own treatment (67.8%)
- To improve clinical practice (66.4%)
Data security and privacy are key concerns expressed by 73% and 62% of citizens respectively. Individuals must have confidence that personal data concerning health will not be misused, will be stored correctly and that high cybersecurity standards are applied for personal data concerning health. Some 64 % of respondents supported the development of a cross-border infrastructure to pool access to health data and scientific expertise more securely across the EU.
Major barriers to accessing health data across the EU were identified. They included:
- Risks of privacy breaches;
- Cybersecurity risks;
- Lack of infrastructure.
In response to the question "What should the EU do to overcome barriers to access and sharing of data?" respondents voiced strong support for the development of an EU legislative framework to ensure cross-border access to and use of data concerning health. The EU should:
- Standardise Electronic Health Records;
- Develop harmonised standards for data-quality and reliability;
- Propose health-related cybersecurity standards, and;
- Support cross-border interoperability through open exchange formats.
53.2% of respondents confirm they do not have access to digital health and care services. Of those who don't, two out of three respondents would like to have access to these digital services and more than 80% recognise that digital innovation, particularly enabling citizen feedback, can improve health care services. In order to address the low level of adoption of digital health solutions in health care, the respondents favoured:
- Sustained EU investment in research and innovation;
- Transfer of knowledge and practices between Member States and regions;
- Common approaches for feedback mechanisms about quality of treatment.