Europeans will only be able to benefit from the affordable, less intrusive and more personalised healthcare which information and communication technologies (ICT) can bring if agreement is reached on how to use health data, experts have warned.
The European Commission must create a legal framework and space to manage the massive amounts of health-related data, according to a new report from the Commission's eHealth Task Force on redesigning healthcare in Europe. The Commission also needs to implement safeguards so that citizens can use health apps with the confidence that their data will be handled appropriately, the report adds, noting that this could boost the integration of user-generated data with official medical information, leading to healthcare that is more integrated and personalised and, therefore, delivers better outcomesl.
In other recommendations presented this week to Neelie Kroes, European Commission Vice President for the Digital Agenda, and John Dalli, Commissioner for Health and Consumer Policy, the Task Force calls for:
- support for 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;
- the creation of a "beacon group" of European Union (EU) member states and regions committed to open data and eHealth, including pioneers in eHealth applications;
- the use of data power: health applications must prove worthy of users' trust, as only then will people make their data available for feedback on preventive care or for benchmarking and monitoring health system performance; and
- re-orientation of EU funding and policies: specific health budget lines need to be responsive and 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 are based on a number of critical preconditions for the effective implementation of eHealth, which are that:
- 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; and
- service providers need to be aware that there may be subgroups of the population that are beyond the reach of eHealth, such as those who - willingly or otherwise - do not have access to the Internet.
Commenting on the report's findings, Vice President Kroes and Commissioner Dali point out that ICT is making health systems more efficient and affordable, and that how data is managed will be critical for the effectiveness of health research, diagnostics and healthcare delivery. Supporting health literacy is also key for patient empowerment and for building trust in eHealth solutions, they note, adding: "we believe member states have much to gain from learning from one another's eHealth experience rather than reinventing the wheel."
And writing in The Guardian newspaper this week, Vice President Kroes described the Task Force's report as "a wake-up call for us all. We need to face some hard facts - in healthcare, we lag at least 10 years behind virtually every other area in the implementation of IT solutions."
Welcoming the results of the UK Whole System Demonstrator (WSD) pilot, which showed a 45% reduction in mortality rates and 20% reduction in emergency admissions, she wrote: "I can't think of a better vaccination against austerity than spreading those results across the UK and Europe."
- The eHealth Task Force was set up a year ago, under the leadership of Estonia's president Toomas Hendrik Ilves, to advise the Commission on how to unlock the potential of eHealth for safer, better and more efficient healthcare in Europe.