Optimising cohort data in Europe

Component Resource and resource type

Capability

Strategy 1- Rules and directives (integrative knowledge mechanisms): − Governance system for checks and barriers to data misuse (includes long term control mechanisms). Strategy 2 – Routines and sequencing processes (integrative knowledge mechanisms): − Setting sustainable routines for participants’ data control: data control is negotiated and checked in a time-patterned sequence. 1) For participants’ motivations: − Combinative capabilities and aggregation capabilities (integration): structuring consent according to a pre-defined set of options. 2) For vulnerable populations’ motivations: − Aggregation capabilities (integration): Identifying the purpose of data use. − Group problem solving and decision-making processes (integrative knowledge mechanisms): setting preferences from the onset; specifying questions types and re-contacting frequency with the participants. Combinative capabilities: − Identifying tools and pathways for data sharing. Sequencing processes (integrative knowledge mechanisms): − Defining controlled data access arrangements.

Trust: a highly intangible, specialised rare and not substitutable resource. Context of emergence: unique historical conditions, causal ambiguity and social complexity.

Trust temporal checkpoints

1) Participants’ motivations consent: Intangible, highly specialised resources. 2) Vulnerable populations motivations for consent: a highly specialised, fragile and heterogeneous resources. Context of emergence: high social complexity. Governance for consent: tangible and heterogeneous resource, includes barriers to entry and position barriers. Context of emergence: From specific historical condition (i.e. the GDPR).

Meta-consent model

Path-oriented governance for consent