The Value of Medical Research Data and its Reuse
Developing Educational Material
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 subsequently 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 we want to bring together patients, bioinformaticians, translational researchers and software developers, to gain a broader insight into the value of data, data sharing and data reuse.