Goodby, Alex W., Olsen, LeighAnne, McGinnis, Michael. "1 Clinical Data as the Basic Staple of the Learning Health System." Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good: Workshop Summary. Washington, DC: The National Academies Press, 2010.
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Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good - Workshop Summary
Issues Motivating Discussion
Discovering what works best in medical care—including for whom and under what circumstances—requires that clinical data be carefully nurtured as a resource for continuous learning.
Transformational opportunities are presented by evolving large and potentially interoperable clinical and administrative datasets.
Clinical data are recorded and held in multiple activities and many institutions, including medical records, administrative and claims records, and research studies.
Public policy and public awareness lag behind the technical, organizational, and legal capacity for reliable safeguarding of individual privacy and data security in mining clinical data for new knowledge.
A significant challenge to progress resides in the barriers and restrictions that derive from the treatment of medical care data as a proprietary commodity by the organizations involved.
Even clinical research and medical care data developed with public funds are often not available for broader analysis and insights.
Broader access and use of healthcare data for new insights require not only fostering data system reliability and interoperability but also addressing the matter of individual data ownership and the extent to which data central to progress in health and health care should constitute a public good.
The Roundtable and Clinical Data
The IOM’s Roundtable on Value & Science-Driven Health Care provides a trusted venue for key stakeholders—patients, health providers, payers, employers, manufacturers, health information technology, researchers, and policy makers—to work cooperatively on innovative approaches to generating and applying evidence to drive improvements in the effectiveness and efficiency of medical care in the United States. Participants seek the development of a learning health system that is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care. They have set a goal that, by the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence.