Posted on July 25, 2014
Large electronic health data networks have the potential to address major public health and clinical research needs. The DCRI’s Lesley Curtis, PhD, and Harvard’s Jeffrey Brown, PhD, and Richard Platt, MD, MSc, recently profiled four of these networks in an article for the July issue of the journal Health Affairs.
Many treatment recommendations today have limited supporting evidence, and knowing which treatments are best for specific conditions or populations can be difficult. Electronic health data captured during clinical care and generated for reimbursement can provide evidence on effectiveness and outcomes, and can support public health surveillance.
The first of the networks profiled by the authors, Mini-Sentinel, was launched in 2009. The U.S. Food and Drug Administration developed Mini-Sentinel in response to the Food and Drug Administration Amendments Act of 2007, which required the agency to create a postmarket surveillance system that uses electronic health data. The network contains administrative and claims data developed by 18 private health plans, supplemented by other sources described below. It currently covers more than 380 million person-years of data, and data are actively accruing on nearly 50 million people.
The next network, the National Patient-Centered Clinical Research Network (PCORnet), is preparing for a launch in 2015. PCORnet will support high-quality, observational, comparative effectiveness research and clinical trials that are embedded in clinical care settings. The initial phase comprises 11 clinical data research networks and 18 patient-powered research networks. The clinical networks’ members are hospitals, federally qualified health centers, state-based health information exchanges, and other practice-based networks that securely collect electronic health information during routine patient care.
The third network, the National Institutes of Health (NIH) Health Care Systems Research Collaboratory, is an initiative of the NIH Common Fund that was started in 2013. Its purpose is to create a new infrastructure to improve the conduct of clinical trials that are embedded in clinical care settings. The Collaboratory is developing the NIH Collaboratory Distributed Research Network to facilitate the use of host organizations’ existing electronic data while minimizing the need to transfer protected health information or proprietary data.
The last network, ESPnet, is a distributed network that enables queries of up-to-date information in electronic health records to support local public health surveillance and intervention activities. It has been active in Massachusetts since 2007 and provides daily reports that cover approximately 20% of the state’s residents, or 1.2 million people.
These networks, the researchers concluded, are “examples of the first stage in the development of a shared national big-data resource that leverages the investments of many agencies and organizations for the benefit of multiple networks and users.”