Optimising cohort data in Europe

For purposive selection, all consortium members were invited to send a list of potential stakeholders. For the “evidence-based synthesis and priority setting” phase, eligible candidates could contribute to 1) setting priorities related to harmonisation methodology, 2) setting priorities related to practical, legal and ethical issues, and 3) principal investigators (PIs) from population-based, patients cohorts and clinical trials to discuss on both topics. Moreover, SYNCHROS’ project officer shared a list of relevant H2020 projects including the coordinators’ contact information. For the “evidence informed policy-making” phase, suggested candidates had to meet the following description: “A representative who is in the position of facilitating research data harmonisation (methodologically and/or ethically/legally) in a health context, and who can, directly or indirectly, implement/make use of the SYNCHROS recommendations.” In the snowballing approach, suggestions were made by key stakeholders and candidates who responded to invitations to participate, either confirming their participation or apologising for not being able to participate, were asked if they could suggest alternative stakeholder candidates that could have an interest in SYNCHROS or could be of interest for SYNCHROS. The open call selection method was based on stakeholder participation advertised publicly, published on the SYNCHROS website and in newsletters. In the systematic selection, the leaders of the different work packages of the project were instructed to keep track of authors that (repeatedly) published on topics that were of particular relevance for SYNCHROS. The four methods combined resulted in a dynamic database of stakeholder candidates. This database was updated during the course of the SYNCHROS project. The stakeholder categories identified and the main reasons for engagement are shown in Table 1. Table 1. Stakeholder categories and motivations for engagement

Stakeholder category

Main motivation for engagement. They…

… have experience/knowledge in cohort research management and can provide information about practical issues (during the data collection phase). … have experience/knowledge in cohort harmonisation and can identify main issues (either methodological, practical, legal or ethical).

IPs from cohort studies

Coordinators of cohort harmonisation initiatives