Call for interest to take part in new EPF Working Group on Digital Health

Digital health is a fast-developing area where much activity today is driven by technology or commercial concerns, rather than patients’ needs. EPF wishes to position the patient community as a driver of innovation and start a debate on what patients need and want on a daily basis from the healthcare system and its organisation, and how technology should be serving these needs.

EPF is launching an internal Working Group to guide and support its strategy on digital health. This working group is open to both all EPF members and external experts on digital health, and will complement the wider EPF membership consultation process.

Digital Health: An ongoing EPF priority

EPF has been involved in various eHealth projects to collect more evidence base in this area, with a strong focus on patients’ role in eHealth as well as needs and expectations of patients towards eHealth services and tools. You can find more information on the relevant part of our website.

At the same time, EPF has been active in the field of data protection and has been heavily involved in the negotiations of the General Data Protection Regulation (GDPR). Our past work on this can also be found on our website.

From 2018 both topics and all other topics related to digital health and data will be combined under the cross-cutting term “digital health”. Our work in 2018 will mainly relate to patient-centred digital healthcare solutions and services; access to, collection and sharing of and use/reuse of patients’ health data; and electronic health records, with a focus on ethical sharing, patients’ privacy and respect for patients’ choices and preferences.

We will develop information resources on digital health and health data with the aim to inform patient communities on this subject. Specific actions include dissemination of information to patient organisations about health data, its collection, sharing and use, to raise awareness and empower them to be active in this highly technical area.

EPF will also develop a report on the results of the patients’ survey on electronic health records and data sharing (conducted in 2017-2018). Patient evidence generated from this survey will be used to contribute to EU and national policies, encouraging patient-centred design and delivery of digital healthcare solutions and services. In addition, we will continue to engage in multi-stakeholder efforts, including the eHealth stakeholder group and numerous other fora to ensure that the patient perspective is embedded in such initiatives.

Objectives of the Digital Health Working Group

The working group will inform, guide and support EPF’s work on digital health from both a strategic and content perspective, in order to support EPF’s broader membership, Board and the Secretariat in this work. The working group will contribute to developing EPF’s overall strategy in digital health, including work towards the gathering of patients’ views on various topics related to digital health, and identify core principles for patient-centred digital health in the light of the forthcoming Commission Communication.

In its work the group will take into account EPF’s ongoing work on health data, including the work within the IMI project, the European Health Data Network (EHDEN); issues emerging from the IMI ADAPT SMART project on real-world evidence; and the implementation of the EU Data protection Regulation (GDPR) from the health governance perspective. The group will also inform EPF membership on technical topics through briefings.

Please see here the draft terms of reference for further information on how the group will operate, meetings, membership, and members’ responsibilities.

Why you should consider participating:

• The working group will provide your organisation with the opportunity to guide and significantly contribute to EPF’s work in this field;
• The working group will provide a platform to develop coordinated patient group effort and action on digital health;
• The working group will facilitate exchange between patient organisations working on digital health;
• The working group provides an opportunity to strengthen your network with key organisations active in this field.

Who can participate and how:

• EPF members are welcome to participate; we welcome patient representatives who have personal experience or expertise on digital health;
• External experts on digital health are invited to participate as members of the group who can contribute viewpoints from different stakeholders, provide policy context and advise EPF members on more technical matters;
• For practical reasons, the working language of the working group will be English;

To express your interest please send the completed application form by e-mail to kostas.aligiannis@eu-patient.eu by 10 April 2018.

Please note that due to the limited number of places, EPF will confirm participation to applicants following the deadline. EPF will be responsible for selecting the members of the group, in order to have a balance of disease areas, gender and nationality as well as an appropriate balance of patients and external participants.