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The growth of healthcare data in electronic format provides immediate opportunities to improve the direct delivery of healthcare and longer term opportunities to responsibly unlock and integrate data for analytics in the areas of clinical research, population health, quality improvement, performance measurement, and monitoring and surveillance. Electronic healthcare data encompasses a broad range of data sources including: EHRs, claims, prescriptions, clinical research, drug review applications, and patient registries. The opportunity to use this data to support research could be lost or limited without timely introduction of research considerations into the development and adoption strategies for EHRs and other electronic healthcare data.
The eHealth Initiative has launched the Data for Research Council to define principles and a framework to support the responsible use of electronic data for research. Spanning a broad stakeholder community that represents care delivery organizations, clinicians, public health, health care IT vendors, researchers, pharmaceutical companies, standards developers, and policy makers, the Data for Research Council provides a unique opportunity to understand issues such as privacy, security, data validity, and data representation from diverse perspectives across the field. The council will use the analysis and framework developed to engage in initiatives that will facilitate the responsible use of electronic health data for broader research and population health advances.
On October 26, 2011, a council of stakeholders representing more than 25 organizations was convened to develop consensus and discuss issues that should be addressed in a landscape review of data and research that eHI is currently writing. This report will be presented at our annual meeting on January 11, 2012, and the final project will be completed later in 2012.
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