Eichler Gabriel S, Cochin Elisenda, Han Jian, Hu Sylvia, Vaughan Timothy E, Wicks Paul, Barr Charles, Devenport Jenny
PatientsLikeMe, Cambridge, MA, United States.
J Med Internet Res. 2016 May 12;18(5):e110. doi: 10.2196/jmir.5130.
With the emergence of data generated by patient-powered research networks, it is informative to characterize their correspondence with health care system-generated data.
This study explored the linking of 2 disparate sources of real-world data: patient-reported data from a patient-powered research network (PatientsLikeMe) and insurance claims.
Active patients within the PatientsLikeMe community, residing in the United States, aged 18 years or older, with a self-reported diagnosis of multiple sclerosis or Parkinson's disease (PD) were invited to participate during a 2-week period in December 2014. Patient-reported data were anonymously matched and compared to IMS Health medical and pharmacy claims data with dates of service between December 2009 and December 2014. Patient-level match (identity), diagnosis, and usage of disease-modifying therapies (DMTs) were compared between data sources.
Among 603 consenting patients, 94% had at least 1 record in the IMS Health dataset; of these, there was 93% agreement rate for multiple sclerosis diagnosis. Concordance on the use of any treatment was 59%, and agreement on reports of specific treatment usage (within an imputed 5-year period) ranged from 73.5% to 100%.
It is possible to match patient identities between the 2 data sources, and the high concordance at multiple levels suggests that the matching process was accurate. Likewise, the high degree of concordance suggests that these patients were able to accurately self-report their diagnosis and, to a lesser degree, their treatment usage. Further studies of linked data types are warranted to evaluate the use of enriched datasets to generate novel insights.
随着患者驱动研究网络生成的数据不断涌现，了解这些数据与医疗保健系统生成的数据之间的对应关系很有意义。
本研究探讨了两种不同来源的真实世界数据的关联：患者驱动研究网络（PatientsLikeMe）的患者报告数据和保险理赔数据。
2014年12月，邀请PatientsLikeMe社区中居住在美国、年龄在18岁及以上、自我报告诊断为多发性硬化症或帕金森病（PD）的活跃患者在为期2周的时间内参与研究。将患者报告的数据进行匿名匹配，并与2009年12月至2014年12月期间的艾美仕健康医疗和药房理赔数据进行比较。比较了数据源之间患者层面的匹配（身份）、诊断以及疾病修饰疗法（DMTs）的使用情况。
在603名同意参与的患者中，94%在艾美仕健康数据集中至少有1条记录；其中，多发性硬化症诊断的一致率为93%。任何治疗使用情况的一致性为59%，特定治疗使用报告（在推算的5年期间内）的一致率在73.5%至100%之间。
可以在两个数据源之间匹配患者身份，多个层面的高度一致性表明匹配过程是准确的。同样，高度一致性表明这些患者能够准确地自我报告他们的诊断，在较小程度上也能报告他们的治疗使用情况。有必要对关联数据类型进行进一步研究，以评估使用丰富数据集来产生新见解的情况。
