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STANDARDIZING ELECTRONIC HEALTH RECORD DATA ON AD/ADRD TO ACCELERATE HEALTH EQUITY IN PREVENTION, DETECTION, AND TREATMENT

C.G. Lyketsos, S.B. Roberts, E.K. Swift, A. Quina, G. Moon, I. Kremer, P. Tariot, H. Fillit, D.E. Bovenkamp, P.P. Zandi, J.G. Haaga

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 (mCODETM) 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.

CITATION:
C.G. Lyketsos ; S.B. Roberts ; E.K. Swift ; A. Quina ; G. Moon ; I. Kremer ; P. Tariot ; H. Fillit ; D.E. Bovenkamp ; P.P. Zandi ; J.G. Haaga ; (2022): Standardizing Electronic Health Record Data on AD/ADRD to Accelerate Health Equity in Prevention, Detection, and Treatment. The Journal of Prevention of Alzheimer’s Disease (JPAD). http://dx.doi.org/10.14283/jpad.2022.47

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