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April 30, 2019; 92 (18) Special Article

Axon Registry® data validation

Accuracy assessment of data extraction and measure specification

Christine M. Baca, Sarah Benish, Aleksandar Videnovic, Karen Lundgren, Brandon Magliocco, Becky Schierman, Laura Palmer, Lyell K. Jones
First published April 5, 2019, DOI: https://doi.org/10.1212/WNL.0000000000007404
Christine M. Baca
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Sarah Benish
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Aleksandar Videnovic
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Karen Lundgren
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Brandon Magliocco
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Becky Schierman
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Laura Palmer
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Lyell K. Jones Jr
From the Department of Neurology (C.M.B., L.P.), University of Colorado Anschutz School of Medicine, Aurora; Department of Neurology (S.B.), University of Minnesota, Minneapolis; Department of Neurology (A.V.), Massachusetts General Hospital, Harvard University, Boston; American Academy of Neurology (K.L., B.M., B.S.), Minneapolis; and Department of Neurology (L.K.J.), Mayo Clinic, Rochester, MN.
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Citation
Axon Registry® data validation
Accuracy assessment of data extraction and measure specification
Christine M. Baca, Sarah Benish, Aleksandar Videnovic, Karen Lundgren, Brandon Magliocco, Becky Schierman, Laura Palmer, Lyell K. Jones
Neurology Apr 2019, 92 (18) 847-858; DOI: 10.1212/WNL.0000000000007404

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Abstract

Objective To conduct a data validation study encompassing an accuracy assessment of the data extraction process for the Axon Registry®.

Methods Data elements were abstracted from electronic health records (EHRs) by an external auditor (IQVIA) using virtual site visits at participating sites. IQVIA independently calculated Axon Registry quality measure performance rates based on American Academy of Neurology measure specifications and logic using Axon Registry data. Agreement between Axon Registry and IQVIA data elements and measure performance rates was calculated. Discordance was investigated to elucidate underlying systemic or idiosyncratic reasons for disagreement.

Results Nine sites (n = 720 patients; n = 80 patients per site) with diversity among EHR vendor, practice settings, size, locations, and data transfer method were included. There was variable concordance between the data elements in the Axon Registry and those abstracted independently by IQVIA; high match rates (≥92%) were observed for discrete elements (e.g., demographics); lower match rates (<44%) were observed for elements with free text (e.g., plan of care). Across all measures, there was a 76% patient-level measure performance agreement between Axon Registry and IQVIA (κ = 0.53, p < 0.001).

Conclusion There was a range of concordance between data elements and quality measures in the Axon Registry and those independently abstracted and calculated by an independent vendor. Validation of data and processes is important for the Axon Registry as a clinical quality data registry that utilizes automated data extraction methods from the EHR. Implementation of remediation strategies to improve data accuracy will support the ability of the Axon Registry to perform accurate quality reporting.

Glossary

AAN=
American Academy of Neurology;
EHR=
electronic health record;
MRN=
medical record number

Footnotes

  • Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Editorial, page 833

  • Received July 20, 2018.
  • Accepted in final form January 24, 2019.
  • © 2019 American Academy of Neurology
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