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. 2014 Jul-Aug;21(4):730-6.
doi: 10.1136/amiajnl-2013-002370. Epub 2014 Mar 28.

Clinical research data warehouse governance for distributed research networks in the USA: a systematic review of the literature

John H Holmes  1 , Thomas E Elliott  2 , Jeffrey S Brown  3 , Marsha A Raebel  4 , Arthur Davidson  5 , Andrew F Nelson  6 , Annie Chung  1 , Pierre La Chance  7 , John F Steiner  8
Affiliations

Clinical research data warehouse governance for distributed research networks in the USA: a systematic review of the literature

John H Holmes et al. J Am Med Inform Assoc. 2014 Jul-Aug.

Abstract

Objective: To review the published, peer-reviewed literature on clinical research data warehouse governance in distributed research networks (DRNs).

Materials and methods: Medline, PubMed, EMBASE, CINAHL, and INSPEC were searched for relevant documents published through July 31, 2013 using a systematic approach. Only documents relating to DRNs in the USA were included. Documents were analyzed using a classification framework consisting of 10 facets to identify themes.

Results: 6641 documents were retrieved. After screening for duplicates and relevance, 38 were included in the final review. A peer-reviewed literature on data warehouse governance is emerging, but is still sparse. Peer-reviewed publications on UK research network governance were more prevalent, although not reviewed for this analysis. All 10 classification facets were used, with some documents falling into two or more classifications. No document addressed costs associated with governance.

Discussion: Even though DRNs are emerging as vehicles for research and public health surveillance, understanding of DRN data governance policies and procedures is limited. This is expected to change as more DRN projects disseminate their governance approaches as publicly available toolkits and peer-reviewed publications.

Conclusions: While peer-reviewed, US-based DRN data warehouse governance publications have increased, DRN developers and administrators are encouraged to publish information about these programs.

Keywords: Clinical research; Data governance; Data privacy; Data warehouse; Research networks.

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Figures

Figure 1
Figure 1
A simple distributed research network. In this schematic, a researcher poses a research question to a portal, typically implemented as a web site with a structured interface that guides the construction of a query. The query is then sent to the participating sites in a predetermined format and language, such as SAS code. The sites run the query and return the result to the portal for use by the researcher, formatted as an aggregated table or de-identified record-level data, depending on the governance policies of the distributed research network.
Figure 2
Figure 2
Flow of document retrieval.
See this image and copyright information in PMC

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