The European Health Parliament (EHP) held its 4^th Plenary Session on 2^nd April 2019 at the European Parliament in Brussels. The event was marked by the launch of a set of policy recommendations aimed at improving health for EU citizens. The recommendations called upon decision makers to take action and were specifically tabled as input to the agenda of the upcoming European Parliament and Commission. The recommendations emanate from EHP’s health policy studies in five areas – data for healthy societies, health literacy, mental health, value of innovation, and air pollution.

Johan Prevot, IPOPI’s Executive Director, as one of the EHP Ambassadors (2018-2019) was invited to speak on patient perspectives on data sharing frameworks in the context of the session of the Committee on “Data for Healthy Societies”. Among the key points of his presentation, Johan highlighted that:

• Many digital tools are developed for patients as end users
• EU policies on e-health should be patient-centric and patients should be consistently consulted and involved
• The launch of a European health data framework presents huge potential to improve diagnosis and care for rare diseases patients
• This will help healthcare professionals in the management of patients and ideally improve knowledge about the diseases themselves
• Access to scientific information should be facilitated through free-to-access research articles and “lay summaries” of published research addressed to patients

The meeting brought together young health leaders, EU and national legislators, media influencers and leading advocates. The EHP 2019 recommendations are presented in the EHP policy report, “The Recommendations by the Next Generation”

The EHP is a Brussels based movement connecting and empowering the next generation of European health leaders to rethink EU health policies. For more information: https://www.healthparliament.eu #WeRun4Health