Europe must agree on health data to benefit from ICT

A group of experts has warned that Europeans will only benefit from the affordable, less intrusive and more personalised healthcare which Information & Communication Technologies (ICT) offer if it is agreed 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 to advise the Commission on how to unlock the potential of eHealth for safer, better and more efficient healthcare in Europe.
Neelie Kroes, European Commission Vice President for the Digital Agenda and John Dalli, European Commissioner for Health & Consumer Policy said: "Information and communication technologies are making our health systems more efficient and sustainable. This report from the eHealth Task Force puts the spotlight on the importance of health data, health literacy and exchange of good practice on eHealth. How we'll manage data will be critical for the effectiveness of our health research, diagnostics and healthcare delivery. It will enable people to play a more central role in the management of their health. Supporting health literacy is also key for patient empowerment and for building trust in eHealth solutions. We believe Member States have much to gain from learning from one another's eHealth experience rather than reinventing the wheel."
The five recommendations to the European Commission:
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.
The Task Force's recommendations will feed into eHealth-related EU initiatives, including the eHealth Network, which is being established according to the provisions of the Directive on patients' rights in cross border healthcare.
The eHealth Task Force presented its report during the conference "Smart Health – Better Lives” in Copenhagen, co-organised by the Danish Presidency of the Council of the European Union and the European Commission. This 10th High Level eHealth Conference 2012 brought together health ministers, government officials and stakeholders to promote innovation for smart health.
The Task Force's recommendations are based on the following critical preconditions for the effective implementation of eHealth:
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.
The Commission has been investing in eHealth research for over 20 years. Since 2004, when the first eHealth Action Plan was launched, it has also been developing targeted policy initiatives aimed at fostering widespread adoption of eHealth technologies across the EU.
Most recently, the Commission launched the European Innovation Partnership on Active & Healthy Ageing. This brings together the public and private sectors, researchers, health practitioners, patients and carers with the aim of adding 2 years to the average number of healthy life years in the EU by 2020. In the second half of 2012 the Commission will present the eHealth Action Plan 2012-2020 to scale-up eHealth for empowerment, efficiency and innovation.