Data Sharing: Electronic Health Records and Research Interoperability

Abstract

Data sharing is extremely important for a number of reasons, and its importance is increasing rapidly as we generate more and more information and data in new areas such as genomics. At the core, the value of data sharing is to allow different technology tools to work together to improve currently antiquated clinical research processes; however, data sharing can also serve to leverage the global uptake of electronic health records to improve workflow and enhance the link between research and healthcare. From the point of view of the patient, data sharing will allow for aggregation of sufficient data to support robust analyses and/or comparisons across studies that will increase the quality of research knowledge gained from healthcare. The concept of data sharing is critical to the advancement of healthcare, which relies on research information for informed clinical decisions. Despite the recognized value of data sharing for the benefit of patients, which includes all of us, there are inherent challenges yet to be overcome. These include, but are not limited to regulations, trust and patient privacy, slow adoption of information technology and standards, as well as workflow, content and technical issues. This chapter focuses on efforts to address these challenges - in particular, collaborations among standards developing organizations and others to develop, harmonize and support interoperability among the standards and to improve workflows between clinical care and research processes. Currently available opportunities and initiatives with significant promise are identified, yet the importance of a stepwise, iterative approach is recognized.KeywordsData sharingElectronic health recordClinical researchData standardsInteroperabilityMedical informaticseSourceWorkflowTranslational science