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Standardizing Electronic Health Record Data on AD/ADRD to Accelerate Health Equity in Prevention, Detection, and Treatment

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Abstract

Improving the prevention, detection, and treatment of Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) across racial, ethnic, and other diverse populations is a national priority. To this end, this paper proposes the development of the Standard Health Record for Dementia (SHRD, pronounced “shared”) for collecting and sharing AD/ADRD real-world data (RWD). SHRD would replace the current unstandardized, fragmented, or missing state of key RWD with an open source, consensus-based, and interoperable common data standard. This paper describes how SHRD could leverage the best practices of the Minimal Common Oncology Data Elements (mCODE™) initiative to advance prevention, detection, and treatment; gain adoption by clinicians and electronic health record (EHR) vendors; and establish sustainable business and governance models. It describes a range of potential use cases to advance equity, including strengthening public health surveillance by facilitating AD/ADRD registry reporting; improving case detection and staging; and diversifying participation in clinical trials.

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Acknowledgments

The authors thank Heather M. Snyder PhD of the Alzheimer’s Association and Steve Bratt PhD of the MITRE Corporation for their comments.

Funding

Constantine G. Lyketsos MD received support from the Richman Family Precision Medicine Center of Excellence in Alzheimer’s Disease at Johns Hopkins. The work of other authors was not supported by any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

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Authors and Affiliations

  1. Johns Hopkins Bayview, Johns Hopkins Medicine, Baltimore, MD, USA

    C. G. Lyketsos

  2. The MITRE Corporation, McLean, VA, USA

    S. B. Roberts, Elaine K. Swift, A. Quina & G. Moon

  3. LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), Washington, DC, USA

    I. Kremer

  4. Banner Alzheimer’s Institute and University of Arizona College of Medicine, Phoenix, AZ, USA

    P. Tariot

  5. Alzheimer’s Drug Discovery Foundation, New York, NY, USA

    H. Fillit

  6. BrightFocus Foundation, Clarksburg, MD, USA

    D. E. Bovenkamp

  7. Johns Hopkins University School of Medicine, Baltimore, MD, USA

    P. P. Zandi

  8. Independent consultant, Bethesda, MD, USA

    J. G. Haaga

Authors
  1. C. G. Lyketsos
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  2. S. B. Roberts
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  3. Elaine K. Swift
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  4. A. Quina
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  5. G. Moon
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  6. I. Kremer
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  7. P. Tariot
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  8. H. Fillit
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  9. D. E. Bovenkamp
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  10. P. P. Zandi
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  11. J. G. Haaga
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Corresponding author

Correspondence to Elaine K. Swift.

Additional information

How to cite this article: C.G. Lyketsos, S.B. Roberts, E.K. Swift, et al. Standardizing Electronic Health Record Data on AD/ADRD to Accelerate Health Equity in Prevention, Detection, and Treatment. J Prev Alz Dis 2022;3(9):556-560; https://doi.org/10.14283/jpad.2022.47

Conflict of interest

The authors declare no conflicts.

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Lyketsos, C.G., Roberts, S.B., Swift, E.K. et al. Standardizing Electronic Health Record Data on AD/ADRD to Accelerate Health Equity in Prevention, Detection, and Treatment. J Prev Alzheimers Dis 9, 556–560 (2022). https://doi.org/10.14283/jpad.2022.47

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  • DOI: https://doi.org/10.14283/jpad.2022.47

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