Report on the 1st round online survey and interviews related to perceived benefits and risks of sharing among cohort investigators

Task 2.1 : Elaboration of steps needed for cohorts to participate in collaborative, decentralized platform – Perceived risk versus benefits of sharing CE and HDL data in cloud-based, federated repository This task aims to set the scene for the establishment of collaborative and decentralized data sharing platforms. While sharing CE and HDL data is supported and sometimes required by major funding agencies, journals, and other stakeholders, cohort study staff and leadership oftentimes do not see data sharing as a net benefit for themselves and their research agenda. Data sharing concerns related to intellectual property, ownership, authorship, and regulatory barriers need to be fully understood and addressed prospectively. Therefore, the focus of this task is to understand the perspective of the potential participants – individual cohort study staff and investigators. We will develop an assessment tool to elicit input and responses from a broad audience of cohort investigators that range from those that are motivated to share all of their data to those who are unwilling to share CE and/or HDL data. We will focus our assessment on understanding: (i) the perceived risks vs. benefits of sharing data in a cloud-based, federated repository; (ii) the perceived need for automated work flows that provide regular analyses of CE and HDL data and how these can be incorporated into the shared platform; (iii) the perceived need for collaborative analyses that leverage human HDL data for personalized medicine and how these can be facilitated though the shared platform; (iv) the perceived need for research capacity building in management of CE and HDL data and analysis; (v) the perceived need and strategies for sensitizing cohort staff to the utility of new forms of high dimensional data for personalized medicine approaches (i.e. microbiome data). We will use an online survey to collect responses and allow for repeated input during the course of the research project. This will be complemented with in-person meetings and especially with one stakeholder conference (see WP6). This task will be managed back-to back with Task 5.1 dedicated to implementation of a Decentralized Organization. Both tasks will undoubtedly partially overlap, but it is critical to have these issues addressed at both a global unifying level and in the context of the local implementation of an adapted governance to overcome obstacles arising at the local level. To help in this integration process, the same participants will participate in both tasks.