Data Systems and Global Health Informatics Research

Data management is a critical aspect of clinical research. The plan for management of research data must be established prior to the initiation of the actual research to demonstrate rigor and transparency, with the goal of making the research reproducible. Attention must be paid to the sources of data, the method by which they will be collected and represented, and where they will be stored and maintained. Metadata should be clearly defined and existing, accepted standards should be adopted wherever possible and reasonable. Researchers must maintain a constant awareness that the data they accrue are proxies for the actual events and objects in the real world and be on guard for biases that the collection process may introduce.

[1]  Douglas MacFadden,et al.  Application of Information Technology The Shared Health Research Information Network ( SHRINE ) : A Prototype Federated Query Tool for Clinical Data Repositories , 2014 .

[2]  James J. Cimino,et al.  The National Institutes of Health's Biomedical Translational Research Information System (BTRIS): Design, contents, functionality and experience to date , 2014, J. Biomed. Informatics.

[3]  G. Franceschini,et al.  In vivo metabolism of a mutant form of apolipoprotein A-I, apo A-IMilano, associated with familial hypoalphalipoproteinemia. , 1993, The Journal of clinical investigation.

[4]  P M Nadkarni,et al.  QAV: querying entity-attribute-value metadata in a biomedical database. , 1997, Computer methods and programs in biomedicine.

[5]  J J Cimino,et al.  The False Security of Blind Dates , 2012, Applied Clinical Informatics.

[6]  Joyce C. Niland,et al.  White Paper: An Informatics Blueprint for Healthcare Quality Information Systems , 2006, J. Am. Medical Informatics Assoc..

[7]  James J. Cimino,et al.  Review: From Data to Knowledge through Concept-oriented Terminologies: Experience with the Medical Entities Dictionary , 2000, J. Am. Medical Informatics Assoc..

[8]  James J. Cimino,et al.  Adapting a Clinical Data Repository to ICD-10-CM through the use of a Terminology Repository , 2014, AMIA.

[9]  David Shahian,et al.  Regulatory and ethical considerations for linking clinical and administrative databases. , 2009, American heart journal.