Novartis Horsham Research Centre, Horsham, West Sussex, UK.
Patient. 2011;4(1):11-7. doi: 10.2165/11585530-000000000-00000.
Internet communication is developing. Social networking sites enable patients to publish and receive communications very easily. Many stakeholders, including patients, are using these media to find new ways to make sense of diseases, to find and discuss treatments, and to give support to patients and their caregivers. We argue for a new definition of patient-reported information (PRI), which differs from the usual patient-reported outcomes (PRO). These new emergent data from the social web have important implications for decision making, at both an individual and a population level. We discuss new emergent technologies that will help aggregate this information and discuss how this will be assessed alongside the use of PROs in randomized controlled trials and how these new emergent data will be one facet of changing the relationship between the various stakeholders in achieving better co-created health.
互联网交流正在发展。社交网站使患者能够非常轻松地发布和接收信息。包括患者在内的许多利益相关者正在利用这些媒体寻找新的方法来理解疾病，寻找和讨论治疗方法，并为患者及其护理人员提供支持。我们主张对患者报告信息（PRI）进行新的定义，这与通常的患者报告结果（PRO）不同。这些来自社交网络的新出现的数据对个体和人群层面的决策都有重要影响。我们讨论了新出现的技术，这些技术将有助于汇总这些信息，并讨论如何在随机对照试验中与 PRO 的使用一起评估这些新出现的数据，以及这些新出现的数据将如何成为改变各种利益相关者在实现更好的共同创造健康方面的关系的一个方面。
