Clinical Data as the Basic Staple of Health Learning. Creating and Protecting a Public Good. Workshop Summary. Learning Health System Series

摘要

Because of their potential to enable the development of new knowledge and to guide the development of best practices from the growing sum of individual clinical experiences, clinical data represent the resource most central to healthcare progress (Arrow et al., 2009; Detmer, 2003). Whether captured during product development activities such as clinical research trials and studies, or as a part of the care delivery process, these data are fundamental to the delivery of timely, appropriate care of value to indi-vidual patientsand essential to building a system that continually learns from and improves upon care delivered. The opportunities for learning from practice are substantial, from improved understanding of the effects of different treatments and therapies in specific patient subpopulations, to developing and refining practices to streamline or tailor care processes for complex patients, to the development of a delivery system that can advance the evidence base on novel diagnostic and therapeutic techniques (Hrynaszkiewicz and Altman, 2009; Nass et al., 2009; NRC, 2009; Safran, 2007). Furthermore, U.S. per capita healthcare costs are now nearly double that of comparable nations (Health care spending in the United States and OECD countries, 2007), and broader access and use of existing and future clinical data may be a key opportunity to better understand and address system-wide factorssuch as waste and inefficienciesthat contribute to rising healthcare expenditures. Clinical data now reside in many often unconnected and inaccessible repositories, making linkage, analysis, and interpretation of these data challenging on an individual or population level. The increase in potentially interoperable electronic and personal health datasetsintegrated with laboratory values, diagnostic images, and patient demographic information and preferencesand development of approaches to link and network these data offer even greater opportunity to create and use rich data resources to help transform healthcare delivery and improve the publics health. Concerns about privacy of health data, as well as the treatment of medical dataeven those generated with public fundsas proprietary goods pose additional challenges to data use (Blumenthal, 2006; Nass et al., 2009, edi-tors, Nature 2005, Ness, 2007; Piwowar et al., 2008).