TY - JOUR
T1 - Clinical research data warehouse governance for distributed research networks in the USA
T2 - A systematic review of the literature
AU - Holmes, John H.
AU - Elliott, Thomas E.
AU - Brown, Jeffrey S.
AU - Raebel, Marsha A.
AU - Davidson, Arthur
AU - Nelson, Andrew F.
AU - Chung, Annie
AU - La Chance, Pierre
AU - Steiner, John F.
PY - 2014
Y1 - 2014
N2 - 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.
AB - 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.
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U2 - 10.1136/amiajnl-2013-002370
DO - 10.1136/amiajnl-2013-002370
M3 - Review article
C2 - 24682495
AN - SCOPUS:84902383705
SN - 1067-5027
VL - 21
SP - 730
EP - 736
JO - Journal of the American Medical Informatics Association
JF - Journal of the American Medical Informatics Association
IS - 4
ER -