J Am Med Inform Assoc - Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.

Tópicos

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Resumo

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 Practice Principles (FIPPs) and Health Insurance Portability and Accountability Act (HIPAA) protected versus non-protected health information. The requirements addressed all FIPPs, showing how a DRN's technical infrastructure is able to fulfill HIPAA regulations, protect privacy, and provide a trustworthy platform for research.

Resumo Limpo

current limit inform best practic develop govern requir distribut research network drns emerg model promot clinic data reus improv timeli compar effect research much exist inform base singl type stakehold research administr paper report triangul approach develop drn data govern requir base combin polici analysi expert interview institut leader patient focus group approach illustr exampl scalabl nation network effect research result requir requir analyz fair inform practic principl fipp health insur portabl account act hipaa protect versus nonprotect health inform requir address fipp show drns technic infrastructur abl fulfil hipaa regul protect privaci provid trustworthi platform research

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