Optimising cohort data in Europe

and alignment with institutional stakeholders such as the EC-DIRECTORATE-GENERAL Research and Innovation, WHO-Europe, Biobanking and Biomolecular Resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC), International HundredK+ Cohorts Consortium (IHCC), Maelstrom Research, etc. Furthermore, the multitude of points expressed by stakeholders can be condensed into the following list of initial and- obviously- most relevant strategic tasks, ordered by pillars. This list can be neither complete nor static. Rather, it is an initial approach covering major points of action suggested by stakeholders in the period 2019-2022. It also practically illustrates a possible organisational and managerial strategy suggested to be implemented in order to tackle the tasks. The list of strategic tasks needs to be subject to periodic review, adjustments and updates. Therefore, we consider the activities of review, adjustments and update as a generic and necessary pivotal strategic task in each pillar. 5.2.1. Pillar I: Standards - Initial Strategic Tasks According to our analysis (cf. Section 1), these strategic tasks aim to convert specialised tangible resources into specialised versatile ones. The tasks are set to: 1. Elaborate, organise and implement the personnel, organisational and technical structures and means for fostering the process and structures for the standardisation and de-facto-standardisation, for the sustainable periodic review, adjustments and update of strategic tasks including the details of a sound, sustainable budgetary related to Pillar I. 2. Generate a state-of-the-art picture of queries practices and organisation (de-facto standards). Strongly encourage the use of existing metadata standards and standard “sets of variables” in all new cohort studies prospectively and create an inventory of existing de facto standard “sets of variables” for specific health-related questions including its definitions, stratification and metadata descriptions. The inventory should be targeted to the needs of the research community. References to findings of the following strategic tasks need to be integrated. 3. Harmonisation of metadata standards for metadata cataloguing. A number of catalogues and initiatives already exist. Examples are Maelstrom Research, CLOSER, HL7 or projects like EU4Digital Initiative. Hereby, Maelstrom- for instance - focuses directly on the issues of cohort data while HL7 refers to electronic communication processes in healthcare and the application layer (#7) of the Open Systems Interconnection (O SI) model, and EU4Digital provides a guideline for Harmonisation and Interoperability in eHealth in general. The examples illustrate that similar challenges exist in different technical and scientific domains, and initiatives have been established fairly independently. It may be unclear whether metadata is directly exchangeable across existing metadata archives. From that, we can derive the strategic task to analyse and evaluate the standardisation efforts and outcomes