Optimising cohort data in Europe

solving and decision-making processes should involve joint knowledge transformation steps where goals and future data would be clarified. In practice, this means that researchers need to engage with the community they are studying, especially when they apply for a consent waiver. Such an engagement should take into account that participants do not understand the language of broad consent for future use. That is, research participants do not consider all future uses in the same way (e.g. they may be more concerned about future commercial than research uses). Researchers thus need to engage in knowledge translation in order to fully explain the contexts where data reuse will be implemented. We can thus conclude that specialised tangible resources continue to play a prevalent role in Pillar III (i.e. Inclusion) and intangible resources are well represented. In this sense, the interaction between tangible and intangible resources are similar to what was observed in Pillar II. The difference is that there is no direct conversion of intangible resources into tangible ones. Both resource types operate in parallel: specialised tangible resources ensure that the content of participatory collaboration platforms are both measurable and explicit while intangible resources reinforce participation through reinforcing relational aspects (mostly through integrative capabilities). An example of such parallel processes can be found in researchers' training. Namely, training (a specialized tangible resource) in federated analysis and implementation of reliable and interoperable data infrastructure ensures that the access, curation and sharing of cohort data is scientifically valid and reliable. In so doing, training increases the social value of research (an intangible resource) because data can be shared in a secure and consistent manner (i.e. research cannot have a social value if it is scientifically not valid). The complete list of components and associated resources of Pillar III is outlined in Table 3. Table 3. Characteristics of Pillar III

Component

Resource and resource type

Capability

Aggregation capabilities (integration): − Linking cohort data with federated infrastructures. Combinative capabilities: − Linking inventory of software to the landscape of use for specific software by different projects.

List of available software for federated analysis and data integration structures

List of available software: a tangible and versatile resource. Displays resource immobility and resource position barriers.