Optimising cohort data in Europe

3. To formulate a robust, stable and sustainable strategic agenda for optimising the benefits and exploitation of health-related cohort data, as the final aim of the project. The functional role of stakeholder involvement in SYNCHROS is related to both processes and results, making them intermediaries for the project outcomes. Nonetheless, each project phase needed different types of stakeholders, with different approaches and levels of engagement. Not all stakeholder categories required equal involvement during the entire project. At the same time, for certain groups of stakeholders, it was considered necessary to continuously engage and use in-person contact to build relationships, while taking into account a flexible approach that adapted to their practical needs (Forsythe et al., 2016). In summary, stakeholder involvement in SYNCHROS was guided by two main purposes, each related to another phase of the project: 1. Evidence-based synthesis and priority setting. 2. Evidence-informed policy-making. 3.2. Stakeholder identification In order to coordinate the stakeholder involvement in SYNCHROS, during the first phase of the project, it was important: y y To define the type of stakeholders relevant for the methodological as well as practical, ethical, and legal aspects. y y To define the type of stakeholders relevant for the implementation facets. y y To determine the inclusion and exclusion criteria (taking into account gender and geographical balance). y y To estimate the number of representatives for each subarea. y y To define the methodology for selecting/detecting stakeholders, including means of communication. Based on an initial analysis carried out during the project’s proposal phase, the following stakeholder groups were considered relevant: researchers, leads of cohort harmonisation initiatives, funding agencies, and officials of societies of longitudinal and cohort studies such as the Society for Longitudinal and Lifecourse Studies. However, it was considered that a broader plethora of stakeholders would have an interest in patient, clinical trial and population cohort studies with an emphasis on harmonisation and integration approaches, in addition to the related methodological, ethical and legal aspects. Therefore, four types of selection methods (purposive selection, snowballing, open call and systematic selection) were combined.