Developing a pediatric pain data repository

Abstract

The management of pediatric pain typically consists of individualized treatment plans and interventions that have not been systematically evaluated. There is an emerging need to create systems that can support the translation of clinical discoveries, facilitate the assessment of current interventions, and improve the collection of patient-centered data beyond routine clinical information. We present the development of the pediatric pain data repository, a custom-built system developed at Boston Children's Hospital by a multidisciplinary pain treatment service. The Repository employs a web platform to collect standardized patient-reported outcomes and integrates this with electronic medical record data. To date, we have collected information on 2577 patients and anticipate adding approximately 500 new patients per year. Major strengths of the Repository include collection of extensive longitudinal patient-reported outcomes, automated clinical data abstraction, and integration of the system into clinical workflows to support medical decision making.

Keywords: data repository; electronic health records; pain conditions; patient-reported outcomes; pediatric populations.

Figure 1.

WeCOPE data capture. Panel A shows the enrollment rates over the years, and Panel B, the patient survey view including pain locations and functional scores.