Data collected for research contains information about diseases and treatments and their impact on patients’ life. The reuse of data would allow additional research with better outcomes for the patients but most of the time data are stored in incompatible or inaccessible systems. To make data easier to integrate, many efforts are still needed, such as the adoption of data standards, national legislations, awareness about the importance of sharing data.
The eTRIKS un-conference workshop held in Barcelona last 18th and 19th of May had the objective to develop an action plan for taking this societal debate on the value of data forward. The event was attended by the main stakeholders in the field, including researchers, representatives of pharmaceutical companies, patient advocates.
The debate addressed many of the challenges for effective data sharing and reuse. One of the key point was the need for creating trust among patients: in this respect it is important to provide clear information and to ensure the full respect of data privacy. Patient groups are called to play an important role on this, collaborating with researchers, industries and regulators and raising the awareness among their networks.
Attendees developed a clear plan and now it is time to take action! We hope to be fully on board for this important project and to contribute to improve research outcomes in Europe. If you wish to receive further information about this project please contact This email address is being protected from spambots. You need JavaScript enabled to view it.