Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.

ABSTRACT: There is currently limited information on best practices for the development of governance requirements for distributed research networks (DRNs), an emerging model that promotes clinical data reuse and improves timeliness of comparative effectiveness research. Much of the existing information is based on a single type of stakeholder such as researchers or administrators. This paper reports on a triangulated approach to developing DRN data governance requirements based on a combination of policy analysis with experts, interviews with institutional leaders, and patient focus groups. This approach is illustrated with an example from the Scalable National Network for Effectiveness Research, which resulted in 91 requirements. These requirements were analyzed against the Fair Information Practic

SUBMITTER: Kim KK 

PROVIDER: S-EPMC4078279 | biostudies-literature | 2014 Jul-Aug

REPOSITORIES: biostudies-literature