Optimising cohort data in Europe

1. Introduction: Resources and Capabilities for an “Institute for Optimising Multistudy Integrative Cohort Research in Health” Personalisedmedicine, fighting epidemics, optimising healthcare systems, and developing treatments to fight cancer or rare diseases are just a few examples of a broad range of topics where answering research questions require multi-cohort involvement in order to reach the statistically relevant number of cases in the specific categories of participants in studies or surveys. This was the starting point and motivation for SYNCHROS (SYNergies for Cohorts in Health: integrating the Role of all Stakeholders), a European H2020 project aimed at improving the coordination, collaboration and exploitation of cohort studies in Europe. Its objectives were to identify the practical, methodological, ethical and legal challenges, to compile and suggest solutions, and to develop a strategic agenda to tackle these challenges. The project was initiated by institutions and experts representing epidemiological and clinical research, patients, legal/ethical competencies and European infrastructures. The core issues in focus were the ethical and legal obstacles, new and emerging data collection technologies, standardisation of variables and metadata, and the sustainability of infrastructures. State of the art in the field of cohort studies is a significant heterogeneity in governance structures and cohort data stored in silos, i.e. data collections held by one organisation that is not easily accessible by researchers from other organisations, particularly, if their institution is situated in another country. And, even if access is finally granted, these data collections are rarely prepared for multi-study-cross-cohort analyses, i.e. harmonisation of variables, metadata and data remains challenging and partially impossible. However, based on SYNCHROS’ findings, experts’ observations and stakeholders’ feedback, it was considered of interest to establish “how” the coordination of cohorts could be further improved in order to make multi-study integrative research across different cohorts easier. The objective of this chapter is to describe a set of strategic tasks, which may be tackled independently depending on available resources and health policy frameworks. It is important that measures are being initiated and implemented complementarily on the basis of an agreed vision such as a roadmap. All suggestions are embedded into a resource- and knowledge-focused strategic management model, which functions as a sustainable approach for further developing, complementing and amending the initial strategic agenda. The multitude of points expressed by stakeholders were condensed into a set of priority strategic tasks, placed in domains or pillars. Three pillars were defined as the major strategic domains along which specific strategic tasks should be ordered and formulated. In this context, initiatives and projects can be planned and conducted in a structured, complementary and synergistic manner. Nevertheless, analysing the stakeholders’ positions and looking at the scattered landscape of patient- and population cohorts and clinical trials, the different types of stakeholders, projects,