IMI at ESOF 2018

IMI took part in ESOF 2018 with a session on the (re)-use of health data on Wednesday 11 July. ESOF (the EuroScience Open Forum) 2018 was held in Toulouse, France from 9 to14 July inclusive. The IMI session was part of the Scientific Programme under the ‘Health in our societies’ theme. In addition, IMI was present at the European Commission stand in the exhibition.

IMI session: ‘My health, my data? A role-playing game surrounding the (re)-use of health data’

Wednesday 11 July, 13:30-14:45

Data holds the power to revolutionise healthcare, but it also entails unprecedented technical and ethical challenges. It is often stored in incompatible formats or inaccessible systems that make it difficult or even impossible to reuse the information to improve patient outcomes. Difficulties integrating data result from the lack of standards, differences in national legislation, and organisational policies. This session explored the fundamental challenge of getting stakeholders to appreciate the importance of sharing data. For patients and healthcare users, this is a particularly sensitive and crucial issue: who actually owns their health data and what ethical standards are in place to protect patients' privacy?

This session followed the PlayDecide format, a role-playing game to tackle controversial issues in a simple and effective way. Participants took on the roles of stakeholders involved in medical research with the goal of gaining new insights and perspectives on data sharing, and identifying potential actions relating to the use of patient data. The innovative format triggered lively discussions on this hot topic.

Moderator:

• Pierre Meulien, Executive Director, Innovative Medicines Initiative (IMI)

Facilitators:

• Dominique Hamerlinck, EUPATI fellow and patient advocate, Dutch Lung Foundation
• Scott Wagners, CEO, BioSci Consulting

Session: 'Sharing patient outcomes for better healthcare'

Wednesday 11 July, 15:15 - 16:30

IMI Executive Director Pierre Meulien was also a speaker in this session on 'sharing patient outcomes for better healthcare' which was part of the Science to Business Programme. The session showcased how collaboration - between large and small companies, research organisations and universities, hospitals and patient associations, social security and policy-makers - over patient outcomes and data sharing will lead to breakthroughs in new models of care, reducing inequalities and preparing the next generation for a better life.

About ESOF

ESOF is the largest interdisciplinary science meeting in Europe. It is dedicated to scientific research and innovation and offers a unique framework for interaction and debate for scientists, innovators, policy makers, business people and the general public. Held every 2 years, ESOF brings together over 4 000 researchers, educators, business actors, policy makers and journalists from all over the world to discuss breakthroughs in science. More than 40% of the participants are students and young researchers.

Event website: www.esof.eu

Twitter: #ESOF2018