What is a Learning Health System?
In 2006, the Institute of Medicine (IOM) convened a Roundtable on Evidence-Based Medicine to explore innovative strategies for improving health care. IOM’s guiding principle was that medical decision-making and health care systems should be “grounded on a reliable evidence base,” “account for individual variation in patient needs,” and facilitate “the generation of new insights on clinical effectiveness.
To realize these goals, the IOM experts envisioned implementing learning health systems (LHS), which would be built to enable “continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by product of the delivery experience. LHS aim to integrate research, improvement, management, and patient care such that every patient receives “the right care at the right time...every time. Critical to a successful LHS is the integration of all stakeholders that utilize and interact with the system, in its construction and implementation. This includes patients, families, medical providers, administrators, representatives from supporting industries, and policymakers.
Transforming Patient Care
The Starzl Network is a Learning Health System designed to transform transplantation by combining transparency, best practices, and patient reported outcomes with innovative technology.Key components include engaging patients and families as partners in the design of network priorities, database design, and tools to disseminate learning, implement knowledge, and improve practice.
Gaps this Learning Health System Addresses
- Pediatric transplantation is a rare disease
- Variation in practice: Geographically, age, center
- Time to implementation and dissemination of knowledge is too long
- Lack of evidence-based practice
- Learning from other disciplines
- Include patient voice
- Integration of industry and tech partners
- Use improvement and research strategies
- Institute of Medicine. The learning healthcare system: Workshop summary. Washington, DC: National Academies Press: 2007.
- Institute of Medicine. Roundtable on value & science-driven health care. Washington, DC: National Academies Press: 2006.
- Forrest CB, Margolis P, Seid M, Colletti RB. PEDSnet: How a prototype pediatric learning health system is being expanded into a national network. Health Aff. (Millwood). 2014: 33(7):1171-1177.
Peng, D, Rosenthal, D, Zafar F, et al. Collaboration and new data in ACTION: a learning health care system to improve pediatric heart failure and ventricular assist device outcomes. Translational Pediatrics, 2019 Oct; 8(4): 349–355.
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