Medical research is a societal activity. The Innovative Medicines Initiative funded public/private partnership, European Translational Information and Knowledge Management Services (eTRIKS) is taking societal engagement to a new level and engaging society in helping to assure the value of medical research data.
eTRIKS is a project that is funded to support research projects in their efforts to make the most out of the medical research data they generate. eTRIKS operates under the principle that ‘integrated and explorable data are valuable data’. The aim is to reduce the effort needed to combine different types of data and making collected data from one project usable in other research projects. There are also ongoing efforts to preserve the data that has been generated. All this is being achieved through the provision of open source software, services, and guidelines.
“The academic community is still trying to escape the approach of using multiple spreadsheets to manage research project data. Collaborative efforts such as eTRIKS are key to bringing the management of research project data to a new level“ Gerrit Meijer, Head of the Pathology Department, Netherlands Cancer Institute
eTRIKS has produced the eTRIKS manifesto which is a statement of the best principles and practices for maximizing the impact of medical research data. The goal is to have every medical researcher, research organization, and supporters of research commit to these principles.
eTRIKS has also launched an effort to enlist a wider community of researchers, bioinformaticians, and software developers to co-create new software that makes the realization of the principles of the eTRIKS Manifesto more efficient.
It is uncommon to involve patients in medical research infrastructure projects such as eTRIKS. Yet, they are the most important stakeholder. eTRIKS is striving to collaborate with patients and patient organizations to help understand the broader societal perspective on the value of medical research data reuse.
A series of collaborative think tanks that will see patients, researchers, and data scientists discussing the value of data are planned. The discussion game Play Decide will be used to help structure and facilitate the discussions.
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