Genomics-Enabled Learning Health Care Systems Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary (2015) / Chapter Skim
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1 Introduction and Themes of the Workshop
1 Introduction and Themes of the Workshop
Pages 1-8
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On December 8, 2014, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine (IOM) hosted a workshop on Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research in Washington, DC.2 Technological advances have improved the accuracy of genome sequencing while decreasing the cost of obtaining it, and this is allowing for an unprecedented opportunity for practitioners to customize treatment options for patients based on their genetic signatures.
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. To examine pragmatic approaches to incorporating genomics in learning health care systems, the IOM's Roundtable on Translating Genomic-Based Research for Health hosted a workshop which convened a variety of stakeholder groups, including commercial developers, health information technology professionals, clinical providers, academic researchers, patient groups, and government and health system representatives, to present their perspectives and participate in discussions on maximizing the value that can be obtained from genomic information.
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BUILDING ON THE EXISTING LEARNING HEALTH CARE SYSTEM The health care system already has made great progress in building a rapid-learning system, even before the widespread incorporation of genomic information in these systems, observed Lynn Etheredge, the director of the Rapid Learning Project. Several entities, including the National Institutes of Health (NIH)
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. Studies performed as randomized clinical trials costing millions of dollars can be completed quickly as registry trials for a fraction of the cost, as was demonstrated with the Thrombus Aspiration in ST-Elevation Myocardial Infarction (TASTE)
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Failure to act now may lead to massive amounts of genomic data being paid for by health systems but not being available for learning. Health Information Technology Infrastructure One of the challenges of integrating genomic information into the health care system, Shekar said, is that the massive amount of data requires a supportive information technology infrastructure for the assessment of the data.
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PUTTING THOUGHTS INTO ACTION A knowledge-generating health care system enabled for genomics will not be a separate system, but rather will be an extension of the current system, said Geoffrey Ginsburg, director of the Center for Applied Genomics and Precision Medicine and professor of medicine and pathology and of biomedical engineering at Duke University and co-chair of the workshop. As such, all stakeholders will be involved in shaping that system, including providers, insurers, patients, researchers, policy makers, and the health information technology community.
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The EHR vendor community will work separately and collaboratively to offer providers systems that will enable them to make more informed decisions, Ginsburg said. The health information technology community will need to design secure and interoperable genomics-enabled systems for actionable use in both health care and community settings.
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The action collaborative is focusing on pharmacogenomics use cases to establish a pilot project for representing genetic test information in a structured format that can reside in the EHR ecosystem. Finally, Chapter 6 presents possible next steps identified during workshop discussion sessions for integrating genomic data into the health care system.
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