WIREDGOV

A high-level group of experts have warned that Europeans will only be able to benefit from the affordable, less intrusive and more personalised healthcare which Information & Communication Technologies (ICT) can bring if agreement is reached on how to use health data.

The group, headed by the President of Estonia, Toomas Hendrik Ilves, delivered this and other recommendations for redesigning health in Europe to Vice President Neelie Kroes and Commissioner John Dalli at eHealth Week 2012 in Copenhagen, Denmark. The eHealth Task Force was established a year ago (see IP/11/551) to advise the Commission on how to unlock the potential of eHealth for safer, better and more efficient healthcare in Europe.

• To create a legal framework and space to manage the massive amounts of health-related data. Implement safeguards so that citizens can use health applications ("apps") with the confidence that their data will be handled appropriately. This could boost the integration of user-generated data with official medical data, leading to healthcare that is more integrated and personalised and therefore delivers better outcomes.
• Support health literacy: Health data needs to be available in a form that patients can understand. More needs to be done to explain to people how integrating appropriately anonymised data into a central system can improve healthcare for them.
• Create a 'beacon group' of Member States and regions committed to open data and eHealth, including pioneers in eHealth applications.
• Use data power: eHealth applications must prove worthy of users' trust. Only then will users make their data available for feedback on preventive care or for benchmarking and monitoring performance of health systems.
• Re-orient EU funding and policies - specific eHealth budget lines need to be responsive and to enable the development of good ideas into fast prototyping and testing. Transparency should be required from health institutions through procurement and funding criteria.

• Individuals are the owners and controllers of their own data, with the right to make decisions on access to their data and to be informed about how it will be used.
• Large amounts of data currently sit in different silos within health and social care systems. Using this data more effectively could transform the provision of care.
• Patients will increasingly demand that their health professionals and institutions use the same technology which they use in everyday life.
• Transparency on the performance of health professionals and institutions enables patients to make more informed choices about where and how they wish to be treated. This will have real impact on resource allocation in health, as funding follows the patient.
• Service providers need to be aware that there may be sub-groups of the population that are beyond the reach of eHealth, such as - those who, willingly or otherwise, do not have access to the internet.