Optimising cohort data in Europe

Of note, all individual stakeholders of each category were approached individually with maximum flexibility, thereby adapting the contact as a format to their availability and needs. 3.3. Stakeholder engagement Engagement begins when the researcher communicates and interacts with stakeholders, and if done properly, finally results in informed decision-making concerning the selection, conduct and dissemination of research findings so that the desired outcomes are achieved (Pandi-Perumal et al., 2015). The level and format of engagement depend on the role that the researcher foresees for the particular stakeholder (or stakeholder category), including multiple “roles” as stimulator, initiator, broker/ mediator, concept refiner, legitimator, educator, context enabler, or impact extender, as well as the evidence-related activities (priorisation, generation, synthesis, integration, dissemination and application, feedback and assessment), tasks and responsibilities assigned to the main project phases (Concannon et al., 2012; Ovretveit at al., 2014; Goodman et al. 2017). The AA1000 Stakeholder Engagement Standards (2) link the envisaged role of the stakeholder with the level of engagement, describing different approaches. In the SYNCHROS project, the principle-based frameworks of the AA1000 Stakeholder Engagement Standards were adapted and combined in the two main phases of SYNCHROS: evidence-based synthesis and priority setting, and evidence informed policy-making. 3.3.1. Evidence-based synthesis and priority setting During this project phase, SYNCHROS aimed to 1) collect the existing evidence on the international and European cohort landscape, as well as international cohort harmonisation initiatives; 2) identify the most recent information on harmonisation and integration methods, and analytic approaches to maximise the value of cohort data, thereby taking into account relevant barriers and facilitators; 3) create an overview of the practical, ethical and legal challenges in the context of cohort data harmonisation, plus the identified barriers and facilitators for collecting, sharing and integrating cohort data; and 4) take stock of emerging and new data collection technologies and types of data, including new exposures and health risks, and their potential impact on the development of future cohort studies and the need to optimise the integration of data. The approaches that were considered most efficient are summarised in Table 2.

(2) https://www.accountability.org/standards/aa1000-stakeholder-engagement-standard/