data across the healthcare system is highly fragmented, presenting significant opportunity for those offering services that coordinate and aggregate data resources. To generate and organize data for evidence-based decision support, it will be important to explore technologies to enhance interoperability, data standardization, and compatibility for future data utilities. Leveraging access to both administrative and clinical data may require additional investments in developing linkages across the variety of healthcare data and data warehouses. Furthermore, emerging opportunities to deliver data at the point of care for healthcare decisions may enhance the public’s involvement in data-mining, data-sharing, and data-generating initiatives. Given the broad range of data sources and possible applications, a national strategy is needed to develop the requisite infrastructure and fill existing gaps in data collection and use.
Speaking from his experience at Kaiser Permanente and in his role as chair of the National Committee on Vital and Health Statistics (NCVHS), Simon Cohn offers an overview of current major activities in healthcare data collection and database capacity development, including those related to administrative and claims data, quality indicators, health status and outcomes data, clinical research data, industry-sponsored pre- and postmarket studies, regulatory studies, registries, and emerging datasets. To help frame the discussion, Cohn presents a taxonomy for health data, then reflects on key issues and barriers to address as we move to a learning health system. Cohn highlights the NCVHS recommendations for enhancing protections for secondary uses of data collected electronically as particularly informative for advancing the clinical data agenda. In the area of enhanced health data stewardship, NCVHS recommends that covered entities be more specific about what data will be used, how, and by whom; that notices of privacy practices need to be more meaningful; and that data stewardship needs to extend to personal health data held by noncovered entities in personal health records and similar instruments.
Massachusetts Health Quality Partners (MHQP) aggregates healthcare data to measure and report on physician performance in a more meaningful and transparent way—creating reports on performance at the physician network, medical group, practice site, and individual physician level, for both doctors and consumers. MHQP Executive Director Barbra Rabson shares aspects of this model, including its success in influencing investments in information systems to support quality and incentives for individual physicians and the challenges of engaging consumers. Overall, Rabson suggests, the MHQP experience and similar models hold promise for a world in which EHRs would be more fully and effectively integrated into medical practice, and clinical, claims, and personal data would be more fully integrated for quality improvement initiatives.
For decades, researchers and clinicians have taken advantage of sources