Clinical Research Information Systems: Using Electronic Health Records for Research

I discuss the various types of systems that have been developed to manage the various aspects of clinical research data: tracking collection, storage and consumption of biospecimens; managing pedigree and genomic data, especially the links between genomic and clinical data; research grant workflow; administrative and financial aspects of research projects; centralized management of service requests, and managing the data collected during research studies. I discuss the relatively limited situations in which electronic health records (EHRs) are preferred over clinical study data management systems (CSDMSs) for the primary capture of research data. These are related to pragmatic clinical trials, as well as quality-improvement initiatives and efforts that utilize the personal health record to capture patient-reported outcomes. I finally discuss practical issues related to interoperation between EHRs and CSDMSs, which relate mainly to transfer of data from one to the other.