CONSENSUS: a Shiny application of dementia evaluation and reporting for the KU ADC longitudinal Clinical Cohort database

Abstract

Background The University of Kansas Alzheimer’s Disease Center (KU ADC) maintains several large databases to track participant recruitment, enrollment, and capture various research-related activities. It is challenging to manage and coordinate all the research-related activities. One of the crucial activities involves generating a consensus diagnosis and communicating with participants and their primary care providers. Process To effectively manage the cohort, the KU ADC utilizes a combination of open-source electronic data capture (EDC) (i.e. REDCap), along with other homegrown data management and analytic systems developed using R-studio and Shiny. Process evaluation In this article, we describe the method and utility of the user-friendly dashboard that was developed for the rapid reporting of dementia evaluations which allows clinical researchers to summarize recruitment metrics, automatically generate letters to both participants and healthcare providers, which ultimately help optimize workflows. Conclusions We believe this general framework would be beneficial to any institution that build reports and summarizing key metrics of their research from longitudinal databases.

Dashboards to Support Implementation of the Quebec Alzheimer Plan: Evaluation Study With Regional and Professional Considerations

“…Considering that the use of dashboards for an Alzheimer Plan is not documented in the scientific literature, future research should focus on the adoption of this tool in different regional health organizations in Quebec and at the governmental level. Studies on the use of dashboards exist for the evaluation of major neurocognitive disorders and the improvement of care offered to these individuals [20][21][22], but no study specifically mentions the use of a dashboard for an Alzheimer Plan. This will facilitate the transition from an experimental dashboard to a regular tool for managing or monitoring the implementation of an Alzheimer Plan.…”

“…The use of a dashboard in national programs such as an Alzheimer Plan further increases the need for considering the multiplicity of uses, as these dashboards need to take into consideration regional differences, especially with respect to resources and populations. Dashboards have been used in the implementation of national programs for health improvement in many countries, including the United States, Canada, and Australia [ 17 - 19 ], for evaluating major neurocognitive disorders [ 20 , 21 ] or for improving care for these individuals [ 22 ]. To our knowledge, no study has reported the use of dashboards in the context of implementing an Alzheimer Plan.…”

Dashboards to Support Implementation of the Quebec Alzheimer Plan: Evaluation Study With Regional and Professional Considerations (Preprint)

“…The use of a dashboard in national programs such as an Alzheimer Plan further increases the need for considering the multiplicity of uses, as these dashboards need to take into consideration regional differences, especially with respect to resources and populations. Dashboards have been used in the implementation of national programs for health improvement in many countries, including the United States, Canada, and Australia [17][18][19], for evaluating major neurocognitive disorders [20,21] or for improving care for these individuals [22]. To our knowledge, no study has reported the use of dashboards in the context of implementing an Alzheimer Plan.…”