More genomic data are generated than can be securely and efficiently shared at scale. Cloud platforms and infrastructures support co-localized data storage and analysis to facilitate sharing that can accelerate genomic data discovery. Genomic and related health data are highly identifiable, and mechanisms for its governance compel institutions to calibrate compliance data access with ethical use. Moving institutions from research data compliance to effective stewardship in the cloud requires understand what repository managers and institutions need to measure this stewardship over time. However, we currently lack understanding of what core outcomes matter for institutional data stewards and how to consistently measure them. This Delphi study aims to fill these gaps by first developing a core outcomes set for data stewardship that will inform the development of a stewardship maturity matrix that institutions and data repositories can use to track their progress on data stewardship over time.
ContributorsVasiliki Rahimzadeh, Baylor College of Medicine
Disease Category: Other
Disease Name: N/A
Age Range: Unknown
Sex:
Nature of Intervention: Other
- Conference participants
- Ethicists
- Governmental agencies
- Policy makers
- Regulatory agency representatives
- Statisticians
- Other
- COS (Other)
- Consensus meeting
- Delphi process
- Literature review
- Semi structured discussion
Three-found Delphi following a scoping review of the literature to synthesize a core outcomes set of responsible genomic data stewardship in cloud environments; a consensus building workshop among Delphi panelists to attach corresponding assessment criteria to each core outcome. Mapping of core outcomes and assessment criteria to a stewardship maturity matrix based on ascending levels of institutional maturity.