Information exchange is critical to ensuring that patients receive the right care, at the right place, and at the right time. Increasingly, this communication depends on the secure, effective, and efficient delivery of information elctronically.1 To ensure health information technology (HIT) investments ultimately lead to greater value, the Health Information Technology for Clinical and Economic Health (HITECH) Act included provisions to develop the infrastructure for health information exchange (HIE).2 In response, health care providers have increasingly adopted and, thus, stored health data in electronic health records (EHRs).3
For many reasons, effective HIE has failed to materialize. In part, EHR vendors and health systems have engaged in information blocking in order to increase revenue and market share. The Office of the National Coordinator, which leads and coordinates US HIT efforts, reports that information blocking “occurs when persons or entities knowingly and unreasonably interfere with the exchange or use of electronic health information.”1 While more research is needed to quantify the impact of these practices, one-half of national HIE leaders that responded to a survey reported that EHR vendors routinely block the flow of information. The most common practices include deploying products with limited interoperability, charging disproportionately high fees for HIE, and making third party access to standardized data difficult.2
These practices have implications for quality improvement, research, and patient care. Providers and scholars increasingly rely on EHR data to track diseases, study interventions, and refine the delivery of care. These activities are critical as health systems embrace learning health care principles.4 Within primary care, organizations are aggregating demographic, social determinants of health, clinical, and billing data extracted from EHRs to coordinate care, conduct comparative effectiveness research, and accelerate learning across practices.5–7
Recognizing the importance of these data for the future of primary care research, the North American Primary Care Research Group’s (NAPCRG) Research Advocacy Committee drafted and Board passed a position statement condemning information blocking.8 This statement will guide advocacy efforts and policies and aligns with similar calls from the College of Family Physicians Canada and American Academy of Family Physicians.9 As we seek to understand the scope of the problem and potential solutions, we welcome your feedback about this statement, your experiences with information blocking, and your ideas about how NAPCRG can support effective HIE (see the link for an online form).8
- © 2019 Annals of Family Medicine, Inc.