title: A national data infrastructure for patient-centered outcomes research.
abstract: Concerted efforts are underway to improve healthcare decision-making through patient-centered outcomes research. These efforts are supported by the Patient-Centered Outcomes Research Trust Fund, which was established within the Patient Protection and Affordable Care Act. This article focuses on describing national data infrastructure efforts that support patient-centered outcomes research. A national data infrastructure has the potential to decrease research costs and improve research throughput. We describe early and current efforts that demonstrated this potential, how the national effort is utilizing the lessons learned from these predecessor efforts and remaining challenges.
authors.affiliation: Office of the Assistant Secretary for Planning & Evaluation, US Department of Health & Human Services, 200 Independence Ave SW, Washington, DC 20201, USA.
authors.forename: Christine
authors.initials: C
authors.lastname: Dymek
authors.forename: Janelle
authors.initials: J
authors.lastname: Gingold
authors.forename: Avinash
authors.initials: A
authors.lastname: Shanbhag
authors.forename: Doug
authors.initials: D
authors.lastname: Fridsma
authors.forename: Pierre L
authors.initials: PL
authors.lastname: Yong
mesh_terms: D057186:Comparative Effectiveness Research; D016208:Databases, Factual; D006801:Humans; D017063:Outcome Assessment, Health Care; D058991:Patient Protection and Affordable Care Act; D018802:Patient-Centered Care; D012107:Research Design; D014481:United States
keywords: comparative effectiveness research; data infrastructure; national data infrastructure; patient-centered outcomes research; research data