Fleurence Rachael L, Beal Anne C, Sheridan Susan E, Johnson Lorraine B, Selby Joe V
Rachael L. Fleurence (
Anne C. Beal is senior vice president and chief patient officer at Sanofi, in Bridgewater, New Jersey.
Health Aff (Millwood). 2014 Jul;33(7):1212-9. doi: 10.1377/hlthaff.2014.0113.
The era of big data, loosely defined as the development and analysis of large or complex data sets, brings new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. In 2013 the Patient-Centered Outcomes Research Institute launched a large national research network, PCORnet, that includes both clinical and patient-powered research networks. This article describes these networks, their potential uses, and the challenges they face. The networks are engaging patients, family members, and caregivers in four key ways: contributing data securely, with privacy protected; including diverse and representative groups of patients in research; prioritizing research questions, participating in research, and disseminating results; and participating in the leadership and governance of patient-powered research networks. If technical, regulatory, and organizational challenges can be overcome, PCORnet will allow research to be conducted more efficiently and cost-effectively and results to be disseminated quickly back to patients, clinicians, and delivery systems to improve patient health.
大数据时代，宽泛地定义为对大型或复杂数据集的开发与分析，为赋能患者及其家属创造、收集并使用自身健康信息以用于临床和研究目的带来了新机遇。2013年，以患者为中心的结果研究所在全国范围内启动了一个大型研究网络——PCORnet，它包括临床研究网络和患者驱动研究网络。本文介绍了这些网络、它们的潜在用途以及所面临的挑战。这些网络通过四种关键方式让患者、家庭成员和护理人员参与其中：安全地贡献数据并保护隐私；在研究中纳入不同且具有代表性的患者群体；确定研究问题的优先级、参与研究并传播结果；参与患者驱动研究网络的领导和治理。如果能够克服技术、监管和组织方面的挑战，PCORnet将使研究能够更高效、更具成本效益地开展，并能迅速将结果反馈给患者、临床医生和医疗服务系统，以改善患者健康状况。
