Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research
Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research
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DOI：
10.1136/amiajnl-2014-002758
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发表时间：
2014-07-01
影响因子：
6.4
通讯作者：
Fleurence, Rachael
中科院分区：
文献类型：
--
作者：
Daugherty, Sarah E.;Wahba, Santa;Fleurence, Rachael
以患者为中心的结局研究所（PCRI）最近推出了PCORnet，以建立一个单一的可操作的多中心数据研究网络，该网络将支持观察性研究和随机临床试验。本文概述了患者驱动的研究网络（PPRN），网络的患者组织集中在一个特定的健康状况，有兴趣分享健康信息和从事研究。PPRN将建立在患者社区的信任基础上，并利用他们的专业知识，与参与者合作，以确定真正的以患者为中心的结果，并指导以患者为中心的研究议程。PPRN将克服共同的挑战，包括招募多样化和有代表性的患者群体;让患者参与治理;设计数据基础设施;在保护隐私的同时安全地共享数据;优先考虑研究问题;将小型网络扩展为更大的网络;并确定可持续发展的途径。变革和组织振兴方案网络将是第一个将变革和组织振兴方案推广到全国范围的分布式研究网络。
The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale.