title: Infrastructure to support learning health systems: are we there yet? Innovative solutions and lessons learned from American Recovery and Reinvestment Act CER investments.
abstract: The 11 big health data networks participating in the AcademyHealth Electronic Data Methods Forum represent cutting-edge efforts to harness the power of big health data for research and quality improvement. This paper is a comparative case study based on site visits conducted with a subset of these large infrastructure grants funded through the Recovery Act, in which four key issues emerge that can inform the evolution of learning health systems, including the importance of acknowledging the challenges of scaling specialized expertise needed to manage and run CER networks; the delicate balance between privacy protections and the utility of distributed networks; emerging community engagement strategies; and the complexities of developing a robust business model for multi-use networks.
authors.affiliation: Research & Education in Health Services Research, Washington, DC, USA.
authors.forename: Erin
authors.initials: E
authors.lastname: Holve
authors.forename: Courtney
authors.initials: C
authors.lastname: Segal
mesh_terms: D057171:American Recovery and Reinvestment Act; D057186:Comparative Effectiveness Research / Q000191:economics / Q000458:organization & administration*; D016494:Computer Security; D003695:Delivery of Health Care / Q000191:economics / Q000458:organization & administration; D004059:Diffusion of Innovation; D005380:Financing, Government; D007255:Information Services / Q000191:economics / Q000458:organization & administration; D008490:Medical Informatics / Q000191:economics / Q000458:organization & administration; D014481:United States
keywords: analytic methods governance; big health data; comparative effectiveness research; data infrastructure; health information technology; learning health system; patient-centered outcomes research; quality improvement