Online Social Networking as an Alternative Information Source for Clinical Resear

描述（由申请人提供）：临床试验和患者记录一直是临床研究的主要信息来源。虽然精心设计的临床试验可以产生高质量的数据，但它们通常非常昂贵和耗时。先前的研究也表明，临床试验中招募的患者不一定代表一般患者人群。病历审查依赖于患者记录，避免了临床试验方法的一些缺点。虽然图表审查研究更加劳动密集型，但结构化数据输入和自然语言处理（NLP）的新发展有助于自动化这一过程。然而，使用图表审查的研究受到记录中数据的准确性和完整性的限制。 在过去十年中，在线社交网络呈指数级增长。一些关注健康的社交网站吸引了大量用户，并开始积累大量详细的临床信息。例如，PatientsLikeMe网站在全球范围内拥有约3，200名肌萎缩侧索硬化症（ALS）患者，其中包括美国约5%的ALS患者。在线社交网络收集的信息主要用于患者之间的共享。这些信息也开始引起医学研究人员的注意。[3、4] 由于使用来自在线社交网络的信息进行医学研究是一个相当新的现象，这种类型的信息源的价值和局限性还没有得到系统的研究。为此，我们建议对来自PatientsLikeMe的患者贡献信息和来自大型医疗记录数据存储库的记录进行比较研究-合作伙伴医疗保健系统的研究患者数据登记处（RPDR）。拟议的研究将集中在ALS，多发性硬化症（MS）和帕金森病（PD）。总体目标是探索医疗记录和在线网络数据的不同之处，以及在线网络数据是否以及如何补充医疗记录数据。具体目标是： 1)从两个不同的数据源中提取症状和治疗信息。 2)比较两种信息来源的症状和治疗的流行情况，并分析差异。 3)从PatientsLikeMe中提取处方药的治疗反应，并分析药物适应症误解的混杂效应。 公共卫生相关性：拟议项目将调查临床研究的新兴数据源：在线社交网络。该数据源可以补充和补充来自临床试验和医疗记录的数据，特别强调患者的经验和观点。

DESCRIPTION (provided by applicant): Clinical trials and patient records have been the main information sources for clinical research. While well- designed clinical trials can produce high quality data, they are generally very expensive and time consuming. Prior studies have also shown that patients enrolled in clinical trials are not necessarily representative of the general patient population. Chart reviews, which rely on the patient records, avoid some of the drawbacks of the clinical trials approach. Although chart review studies are more labor intensive, new developments in structured data entry and natural language processing (NLP) are helping to automate the process. However, studies which use chart reviews are limited by the accuracy and completeness of the data in the records. In the past decade, online social networks have grown exponentially. Some health-focused social network sites have attracted large numbers of users and begun accumulating large quantities of detailed clinical information. The PatientsLikeMe site, for instance, has about 3,200 amyotrophic lateral sclerosis (ALS) patients worldwide, and includes about 5% of the ALS population in the US. Information gathered by online social networks is primarily intended for patients to share with each other. Such information has also begun to attract the attention of medical researchers.[3, 4] Because using information from online social networks for medical research is a fairly new phenomenon, the value and limitation of this type of information source have not been systematically examined. To do so, we propose to conduct a comparison study of patient-contributed information from PatientsLikeMe and records from a large medical record data repository - the Research Patient Data Registry (RPDR) of the Partners Healthcare Systems. The proposed study will focus on ALS, multiple sclerosis (MS), and Parkinson's disease (PD). The general goal is to explore how the medical record and online networking data differ, and if and how online networking data could complement the medical record data. The specific aims are: 1) Extract symptom and treatment information from the two different data sources. 2) Compare the prevalence of symptoms and treatments from the two information sources and analyze the difference. 3) Extract treatment response of prescription medications from PatientsLikeMe and analyze the confounding effect of the misunderstanding of medication indication. PUBLIC HEALTH RELEVANCE: The proposed project will investigate an emerging data source for clinical research: online social network. This data source may complement and supplement the data from clinical trials and medical records, with a unique emphasis on patients' experience and perspectives.