What Does the System Need to Know?
Data on how patients respond to diagnostic technologies, treatments, interventions, or care delivery methods are the raw material for generating new clinical knowledge. However, gathering this raw material currently requires significant effort through specialized research protocols. Substantial quantities of clinical data are generated every day in the regular process of care. Unfortunately, most of this information remains locked inside paper records, which are difficult to access, transfer, and query. As of 2011, only about 34-35 percent of office-based physicians were using a basic electronic health record (EHR) system (Decker et al., 2012; Hsiao et al., 2011), while only 18 percent of hospitals had a basic system (DesRoches et al., 2012).
The anticipated growth in the adoption of digital records presents an unprecedented opportunity to improve the supply of data available for learning, particularly as data sources are designed to capture information generated during the delivery of care. Examples of such sources include larger clinical and administrative databases, clinical registries, personal electronic devices (such as smartphones and mobile sensors), clinical trials for regulatory purposes (such as new drug applications), and advanced EHR systems. New sources for data capture are fueled in part by the infusion of capital provided by the Health Information Technology for Economic and Clinical Health (HITECH) Act,3 which included financial incentives for the meaningful use of EHR systems. Just as the information revolution has transformed many other fields, growing stores of data hold the same promise for improving clinical research, clinical practice, and clinical decision making.
Health care providers play a critical role in supplying clinical data for research and ensuring the quality of the data. To achieve strong provider participation in the learning enterprise, data capture must be seamlessly integrated into providers’ daily workflow and must not disrupt the clinical routine. In addition, professional and specialty societies might be engaged to increase the number of providers willing to participate in the clinical research enterprise. Finally, aligning financial incentives and reimbursement can encourage providers and health care organizations to gather, store, and manage clinical data. Currently, many individuals and organizations donate their time when collecting data for research, which limits the amount of effort they can expend on these initiatives. Specific incentives for generating clinical data could increase the supply of data available for research and the quality of the overall enterprise.
3Included in the American Recovery and Reinvestment Act, Public Law 111-5, 111th Congress (February 17, 2009).