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Feasibility of establishing a multi-center research database using the electronic health record: The PURSUIT network

  • Vijaya M. Vemulakonda
    Correspondence
    Correspondence to: V.M. Vemulakonda, MD, JD, Associate Professor, Pediatric Urology, Children's Hospital Colorado, Division of Urology, Department of Surgery, University of Colorado Denver Anschutz Medical Campus, 13123 East 16th Avenue, Mailbox B-463, Aurora, CO 80045, USA, Tel.: +720 777 6846; fax: +720 777 7370
    Affiliations
    Pediatric Urology Research Enterprise, Department of Pediatric Urology, Children's Hospital Colorado, Aurora, CO, USA

    Division of Urology, Department of Surgery, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA

    Adult and Child Center for Health Outcomes Research and Delivery Science, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA
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  • Nicolette Janzen
    Affiliations
    Department of Pediatric Urology, Texas Children's Hospital, Houston, TX, USA

    Department of Urology, Baylor College of Medicine, Houston, TX, USA
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  • Adam B. Hittelman
    Affiliations
    Department of Pediatric Urology, Yale New Haven Children's Hospital, New Haven, CT, USA

    Department of Urology, Yale School of Medicine, New Haven, CT, USA
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  • Sara Deakyne Davies
    Affiliations
    Analytics Research Core, Children's Hospital Colorado, Aurora, CO, USA
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  • Carter Sevick
    Affiliations
    Adult and Child Center for Health Outcomes Research and Delivery Science, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA
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  • Andrew C. Richardson
    Affiliations
    Research Informatics, Rady Children's Hospital San Diego, San Diego, CA, USA
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  • Josiah Schissel
    Affiliations
    Clinical Informatics, Rady Children's Hospital San Diego, San Diego, CA, USA
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  • Debasis Dash
    Affiliations
    Department of Pediatric Urology, Texas Children's Hospital, Houston, TX, USA

    Department of Urology, Baylor College of Medicine, Houston, TX, USA
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  • Richard Hintz
    Affiliations
    Department of Pediatric Urology, Yale New Haven Children's Hospital, New Haven, CT, USA

    Department of Urology, Yale School of Medicine, New Haven, CT, USA
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  • Ron Grider
    Affiliations
    Department of Pediatric Urology, University of Virginia Children's Hospital, Charlottesville, VA, USA

    Department of Urology, University of Virginia Health Sciences Center, Charlottesville, VA, USA
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  • Parker Adams
    Affiliations
    Pediatric Urology Research Enterprise, Department of Pediatric Urology, Children's Hospital Colorado, Aurora, CO, USA

    Division of Urology, Department of Surgery, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA
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  • Matt Buck
    Affiliations
    Department of Pediatric Urology, Yale New Haven Children's Hospital, New Haven, CT, USA

    Department of Urology, Yale School of Medicine, New Haven, CT, USA
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  • Jordon King
    Affiliations
    Department of Pediatric Urology, Texas Children's Hospital, Houston, TX, USA

    Department of Urology, Baylor College of Medicine, Houston, TX, USA
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  • Emily Ewing
    Affiliations
    Department of Pediatric Urology, Rady Children's Hospital San Diego, San Diego, CA, USA

    Department of Urology, University of California San Diego, San Diego, CA, USA
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  • Gemma Beltran
    Affiliations
    Pediatric Urology Research Enterprise, Department of Pediatric Urology, Children's Hospital Colorado, Aurora, CO, USA

    Division of Urology, Department of Surgery, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA
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  • Sean Corbett
    Affiliations
    Department of Pediatric Urology, University of Virginia Children's Hospital, Charlottesville, VA, USA

    Department of Urology, University of Virginia Health Sciences Center, Charlottesville, VA, USA
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  • George Chiang
    Affiliations
    Department of Pediatric Urology, Rady Children's Hospital San Diego, San Diego, CA, USA

    Department of Urology, University of California San Diego, San Diego, CA, USA
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      Summary

      Background

      Although multi-center research is needed in pediatric urology, collaboration is impeded by differences in physician documentation and research resources. Electronic health record (EHR) tools offer a promising avenue to overcome these barriers.

      Objective

      To assess the accuracy, completeness, and utilization of structured data elements across multiple practices.

      Study design

      A standardized template was developed and implemented at five academic pediatric urology practices to document clinic visits for patients with congenital hydronephrosis and/or vesicoureteral reflux. Data from standardized elements in the template and from pre-existing EHR fields were extracted into a secure database. A 20% random sample of infants with data from structured elements from 1/1/2020 and 4/30/2021 were identified and compared to manual chart review at sites with >100 charts; all other sites reviewed at least 20 charts. Manual chart review was standardized across sites and included: clinic and operative notes, orders linked to the clinic encounter, radiology results, and active medications. Accuracy of data extraction was evaluated by computing the kappa statistic and percentage agreement. For sites that had adopted the templates prior to 6/1/2019 (early adopters), a list of eligible patients with an initial clinic visit from 1/1/2020–7/27/2020 was generated using standardized reporting techniques and confirmed by manual chart review. Physician utilization of the template was then calculated by comparing patients with data obtained from the note template to the generated list of eligible patients.

      Results

      230 patient records met study criteria. Agreement between manual chart review and data extracted from the EHR was high (>85%). Race, ethnicity and insurance data were misclassified in about 10–15% of cases; this was due to site-specific differences in how these fields were coded. Renal ultrasound was misclassified 12% of the time; this was primarily due to outside images documented in radiology results but not included in the clinical note. All other data elements had >90% agreement (Figure). Template utilization for early adopters was >75% (75.5–87.5%).

      Discussion

      This is the first study in urology to demonstrate that use of structured data elements can support multi-center research. Limitations include: inclusion of only academic sites with the Epic EHR and lack of data on utilization and sustainability at sites without a prior history of structured template use.

      Conclusions

      Summary Figure
      Graphical AbstractAgreement between EHR-based data capture and manual chart review.

      Keywords

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