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CC BY-NC-ND 4.0 · Appl Clin Inform 2023; 14(05): 866-877
DOI: 10.1055/s-0043-1774812
Research Article

Development and User Testing of a Dynamic Tool for Rheumatic Heart Disease Management

Sarah R. de Loizaga
1   The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
2   Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States
,
Jafesi Pulle
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Joselyn Rwebembera
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Jessica Abrams
4   Division of Paediatric Cardiology, Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa
5   Reach, Cape Town, South Africa
,
Jenifer Atala
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Emily Chesnut
6   Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
,
Kristen Danforth
7   Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States
,
Ndate Fall
1   The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
,
Nicholas Felicelli
6   Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
,
Karen Lapthorn
6   Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
,
Chris T. Longenecker
7   Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States
,
Neema W. Minja
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Ryan A. Moore
1   The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
2   Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States
,
Riley Morrison
6   Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
,
Jeremiah Mwangi
8   Reach, Geneva, Switzerland
,
Doreen Nakagaayi
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Miriam Nakitto
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Craig Sable
9   Department of Cardiology, Children's National Medical Center, Washington, District of Columbia, United States
,
Amy Sanyahumbi
10   Division of Pediatric Cardiology, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, United States
,
Rachel Sarnacki
9   Department of Cardiology, Children's National Medical Center, Washington, District of Columbia, United States
,
Jenipher Thembo
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Sophie La Vincente
8   Reach, Geneva, Switzerland
,
David Watkins
7   Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States
,
Liesl Zühlke
11   Division of Cardiology and Paediatric Cardiology, Department of Medicine/Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa
12   South African Medical Research Council, Cape Town, South Africa
,
Emmy Okello
3   Uganda Heart Institute, Mulago Hospital, Kampala, Uganda
,
Andrea Beaton
1   The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
2   Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States
,
Judith W. Dexheimer
2   Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States
13   Division of Emergency Medicine and Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
› Institutsangaben Funding This work was funded by American Heart Association Strategically Focused Research Network Grant 20SFRN35380042.
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Abstract

Objective Most rheumatic heart disease (RHD) registries are static and centralized, collecting epidemiological and clinical data without providing tools to improve care. We developed a dynamic cloud-based RHD case management application with the goal of improving care for patients with RHD in Uganda.

Methods The Active Community Case Management Tool (ACT) was designed to improve community-based case management for chronic disease, with RHD as the first test case. Global and local partner consultation informed selection of critical data fields and prioritization of application functionality. Multiple stages of review and revision culminated in user testing of the application at the Uganda Heart Institute.

Results Global and local partners provided feedback of the application via survey and interview. The application was well received, and top considerations included avenues to import existing patient data, considering a minimum data entry form, and performing a situation assessment to tailor ACT to the health system setup for each new country. Test users completed a postuse survey. Responses were favorable regarding ease of use, desire to use the application in regular practice, and ability of the application to improve RHD care in Uganda. Concerns included appropriate technical skills and supports and potential disruption of workflow.

Conclusion Creating the ACT application was a dynamic process, incorporating iterative feedback from local and global partners. Results of the user testing will help refine and optimize the application. The ACT application showed potential for utility and integration into existing care models in Uganda.

Keywords

medical informatics - pediatrics - rheumatic heart disease - public health informatics

Protection of Human and Animal Subjects

All study related activities were approved by the CCHMC Institutional Review Board (IRB) as well as the Makerere IRB and was conducted in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects.


Supplementary Material



Publikationsverlauf

Eingereicht: 17. Januar 2023

Angenommen: 08. August 2023

Artikel online veröffentlicht:
01. November 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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