Which digital technologies have the greatest potential to empower patients? What actions can patient organisations take? These two questions were at the core of the European Patient Innovation Summit 2018 which gathered 270 patient advocates representing various chronic diseases. EFA’s Giuseppe De Carlo is in the Steering Committee of this annual initiative, together with other patient colleagues.
The Summit, which is an initiative from Novartis, EFA’s sustainable funding partner, started with the presentation of the EPIS Ideathon winner 2017, HOOPE, an online platform that connects citizens to relevant patient associations. The platform was developed in Portugal and it includes at the moment 27 patient organisations. The goal is to include all patient groups active in the country, raise awareness about the work they do and encourage collaborations among themselves.
Two keynote presentations provided the basis for discussions: Dr David Ebert from the Vrije Universiteit Amsterdam gave an insight of available technologies for patients with chronic conditions, emphasising the benefits of internet and app-based interventions; Brian O’Connor, Chair of the European Connected Health Alliance (ECHA), explained how patient groups can support the adoption of technologies. He encouraged the involvement of patients in the development of these tools and to put into consideration their unique experience and knowledge.
All participants took part in a live polling on recommendations for adoption of the most promising patient relevant technologies which will provide the basis for a White Paper that can be used by patient organisations as advocacy tool.