Electronic Patient-Reported Data Capture as a Foundation of Rapid Learning Cancer Care

被引:109
作者
Abernethy, Amy P. [1 ,2 ]
Ahmad, Asif [3 ]
Zafar, S. Yousuf [1 ,2 ]
Wheeler, Jane L. [1 ]
Reese, Jennifer Barsky [4 ]
Lyerly, H. Kim [2 ,5 ]
机构
[1] Duke Univ, Med Ctr, Dept Med, Div Med Oncol, Durham, NC 27710 USA
[2] Duke Univ, Med Ctr, Duke Comprehens Canc Ctr, Durham, NC 27710 USA
[3] Duke Univ, Med Ctr, Duke Univ Hlth Syst, Dept Med, Durham, NC 27710 USA
[4] Johns Hopkins Sch Med, Dept Psychiat & Behav Sci, Baltimore, MD USA
[5] Duke Univ, Med Ctr, Dept Surg, Durham, NC 27710 USA
关键词
patient-reported outcomes; rapid learning healthcare; data integration; personalized medicine; QUALITY-OF-LIFE; SEXUAL DYSFUNCTION; PREVALENCE; SCORES;
D O I
10.1097/MLR.0b013e3181db53a4
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
100404 [儿少卫生与妇幼保健学];
摘要
Background: "Rapid learning healthcare" presents a new infrastructure to support comparative effectiveness research. By leveraging heterogeneous datasets (eg, clinical, administrative, genomic, registry, and research), health information technology, and sophisticated iterative analyses, rapid learning healthcare provides a realtime framework in which clinical studies can evaluate the relative impact of therapeutic approaches on a diverse array of measures. Purpose: This article describes an effort, at 1 academic medical center, to demonstrate what rapid learning healthcare might look like in operation. The article describes the process of developing and testing the components of this new model of integrated clinical/research function, with the pilot site being an academic oncology clinic and with electronic patient-reported outcomes (ePROs) being the foundational dataset. Research Design: Steps included: feasibility study of the ePRO system; validation study of ePRO collection across 3 cancers; linking ePRO and other datasets; implementation; stakeholder alignment and buy in, and; demonstration through use cases. Subjects: Two use cases are presented; participants were metastatic breast cancer (n = 65) and gastrointestinal cancer (n = 113) patients at 2 academic medical centers. Results: (1) Patient-reported symptom data were collected with tablet computers; patients with breast and gastrointestinal cancer indicated high levels of sexual distress, which prompted multidisciplinary response, design of an intervention, and successful application for funding to study the intervention's impact. ( 2) The system evaluated the longitudinal impact of a psychosocial care program provided to patients with breast cancer. Participants used tablet computers to complete PRO surveys; data indicated significant impact on psychosocial outcomes, notably distress and despair, despite advanced disease. Results return to the clinic, allowing iterative update and evaluation. Conclusions: An ePRO-based rapid learning cancer clinic is feasible, providing real-time research-quality data to support comparative effectiveness research.
引用
收藏
页码:S32 / S38
页数:7
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