Patient representatives wanted for stakeholder discussions on the value of data at EU Parliament
eTRIKS, an Innovative Medicines Initiative (IMI) project, is looking for 10-12 patient representatives to take part in an event that brings stakeholders together to discuss the value of research data. eTRIKS provides advice, open source platforms and training to translational research projects and wants to reduce the effort needed to integrate, explore and preserve your data.
Across Europe health researchers are collecting more and more information about diseases and treatments and how they impact individual patients. Often data is stored in incompatible, inaccessible systems that make it difficult or even impossible to reuse the information to improve patient outcomes. The challenges to using the data to their full value may be both practical and ethical.
Sharable, or standardised integratable data, is valuable data. In this form data is compatible with all other standardised forms of data, which then enables broader and richer analysis. The challenges that stop data becoming integrateable are the non-adoption of data standards, national legislation and organisational policy and a lack of understanding of the importance to share data.
eTRIKS is looking to inform medical researchers about the value of data and to provide practical advice on making data more valuable through ethical sharing. To do this they want to bring together patients, eTRIKS expertise and supported project representatives, to gain a broader insight into the value of data, data sharing and data reuse.
The event details are as follows:
Date: October 20th 2016
Venue: The European Parliament
Host: MEP/IMI/eTRIKS /BioSci Consulting
Stakeholder invitees: Patients, Patient Organisations, MEP’s, Funding bodies, Clinical Researchers, Data Managers or processors, policy makers
Facilitators: BioSci Consulting
Attendee details: 20-25 attendees plus 4 or 5 facilitators. Attendees by invite and application
Venue request: Room to seat 30 with sufficient space for discussion groups at table or in small clusters of 5 + facilitator
Timing: 2.5 hours session followed by networking space with refreshments, from 10.00-12.30 (CEST) with refreshments after
Catering: Light refreshments (Coffee/Tea/Juice/Sandwiches/Fruit at lunchtime, Coffee/Tea/Juice to start).