eHealth: Much More than Patients’ Data

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On 10-12 May, the annual eHealth Week took place in Malta. Bringing together all major players in the field, including patient organisations, the convention was the opportunity to reflect on new developments and get updates on the coming Commission’s paper on the matter.

Invited to represent EPF in a high-level panel on new EU’s initiatives, EPF’s Secretary General Nicola Bedlington underlined the need to ensure that the digitalisation of health and social systems and services are designed, assessed, and implemented in an integrated and patient-centred way and that policies and programmes effectively enable and promote patient-centeredness.

Nicola reminded the audience that “digital transformation is not only a means to support the resilience and sustainability of our health and social systems but also a means to integrate health and social care, and informal care”. She also stressed the need for a more holistic approach to health care and social services, as demonstrated in EPF’s access to healthcare survey, as particularly relevant for the ageing population as well as patients with multiple chronic conditions.

The eHealth Week also saw the European Commission announcing the coming publication of a Communication on Digital Health. This policy paper is expected to address “citizens’ secure access to electronic health records and the possibility to share it across borders and the use of e-prescription”. The communication should also address interaction between patients and health care providers to support prevention and citizen empowerment.

Very much in time with the publication of this Communication, EPF will be launching a survey on electronic health records and data sharing later this year, to gain insight into the patients’ perspective and principles on secure access and safe sharing of health data. Results of this important survey will be analysed and published in the course of 2018.

Patient organisations such as EPF and its member organisations have a key role to play in ensuring patients are informed, empowered and involved in the design and use of digital health technologies and services, to ensure that their right to protection of personal data is implemented while maintaining the possibility for patients to share their data smoothly for the management of their condition by health services, and to advance health research.

EPF eHealth Webinar

EPF organised a webinar on eHealth this late April to inform our members on current developments and challenges in eHealth.

The webinar offered updates on EPF’s eHealth-related activities, along with two guest presentations, by Sevala Malkic, from the European Commission DG SANTE and Monika Benson, from Dystonia Europe on its patient-developed application, ‘MyDystonia’. The webinar gave a good overview of the EU eHealth policy framework as well as a concrete example of an application led by patients for patients, furthering the knowledge and collaboration between EPF members on this subject.

What is eHealth and why does it matter to patients?

eHealth is the use of information and communication technologies (ICT) for health. Examples of where eHealth is used include in the management of chronic conditions, treatment, conducting research, health workforce education and monitoring public health.

Patient-focused development of digital health technologies and services is closely linked to patient empowerment and access to health services as well as promotion of health literacy, as digital health literacy gains importance.

eHealth is often cited as a solution towards sustainability of healthcare, in a context of growing healthcare demand due to demographic change, and shortages of healthcare professionals.

While eHealth holds many promises and potential for EU patients and healthcare systems, it is important that patient-centred development of eHealth is fostered, with equity of access, patient safety, and quality of care as key pillars.


Contact: Katie Gallagher, Policy Adviser,