tiatives, and distributed research efforts. Workshop conversations often pointed to these efforts, such as those at Kaiser Permanente and Geisinger Health System, suggesting that continued coordination between these delivery systems and relevant federal government agencies would be important in growing the digital health infrastructure.

As the stewards of the largest stores of clinical and transactional information outside of the federal government, insurers, payers, and product developers have an essential role to play in development of the digital infrastructure. Their use of transactional health data to assess utilization patterns, effectiveness, and efficiency is a foundational block on which strategies for broader knowledge generation can build. Furthermore, companies such as UnitedHealthcare have begun engaging the public in the use of data in health. These efforts often were cited during discussions as crucial first steps in establishing a learning culture.

Research is a fundamental aspect of the learning health system. Consequently, participants noted the fundamental role researchers have in developing the infrastructure necessary for continuous knowledge generation and application. Formation of multidisciplinary research communities was often cited as a critical step in accelerating many of the strategies discussed. Funding for these communities was noted as a clear opportunity for collaboration between NSF and NIH. Additionally, discussions highlighted that much work remains to be done in order to maximize the knowledge generation capabilities of the digital infrastructure, and that clinical research and product development communities have an essential role in building this capacity.

As much of the progress to date is a result of initiatives from many independent organizations, their continued efforts as facilitators and innovators were noted as crucial to accelerating progress. Reference was often made to the importance of these organizations as the foundational elements for coordination and governance leadership from outside government.

Finally, and ultimately of paramount importance, is the global perspective. As highlighted during workshop discussions and presentations (see Chapter 8), meeting the goals of a learning health system will inevitably require drawing upon resources and leadership of similar efforts throughout the world. Some of this activity has begun in the limited arena of infectious disease surveillance and monitoring, and offers a hint of the potential opportunities—and challenges—in developing a truly global clinical data utility for health progress.


Northrop, L., P. H. Feiler, B. Pollak, and D. Pipitone. 2006. Ultra-large-scale systems: The software challenge of the future. Pittsburgh, PA: Software Engineering Institute, Carnegie Mellon University.

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