Electronic Health Record–Enabled Research in Children Using the Electronic Health Record for Clinical Discovery

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Key points

  • The electronic health record (EHR) contains a massive amount of discrete patient data that are generated through the routine provision of patient care.

  • EHR data can be so-called big data based on volume (total number of patients/data points), velocity (the rate at which it is generated), and/or variety.

  • Data validation is imperative because many of the data were collected for clinical, rather than research, purposes.

  • EHR data can be used to build large patient cohorts and/or identify patients with

The electronic health record data set

The EHR data set is immense; the scale is on par with many of the big data disciplines such as genomics and proteomics. Across an entire children’s hospital, clinical care generates hundreds of thousands of data points per day and tens of millions of data points annually; data generated from ambulatory care and the narrative data contained within clinical notes add substantially more information. However, although the volume of data is alluring, some elements are easier to extract, some have

Electronic health record–enabled research methodologies and examples of analytical approaches

The types of studies that can be performed using EHR data typically conform to the fairly standard methodologies used with other types of data. A summary of these approaches and their advantages/disadvantages in clinical research informatics is shown in Table 2. Detailed in Table 3 is a comprehensive list, by study type, of EHR-enabled pediatric studies as of publication.

Limitations surrounding electronic health record–enabled research

EHR-enabled research and the data contained within the EHR offer several benefits. However, this methodology is subject to certain limitations. Most fundamentally, other than studies that use the EHR to facilitate prospective trials, using EHR data to enable clinical discovery is retrospective and observational in nature. Although many interesting associations can be identified, retrospective studies cannot prove causality. Some clinicians think of EHR-enabled inquiry as hypothesis generating

Summary

EHRs are becoming integrated into the fabric of children’s health and are critical to the future of clinical discovery. EHR-enabled research offers great potential; as EHR adoption expands, the possibilities of EHR-enabled clinical discovery will increase substantially. The capacity to generate vast retrospective cohorts and big data–sized data sets is one of the most practical applications of the technique. However, as clinicians come to better understand the intersection between the EHR, care

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    Disclosure: None of the authors have anything to disclose.

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