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

Sarah R. de Loizaga; Jafesi Pulle; Joselyn Rwebembera; Jessica Abrams; Jenifer Atala; Emily Chesnut; Kristen Danforth; Ndate Fall; Nicholas Felicelli; Karen Lapthorn; Chris T. Longenecker; Neema W. Minja; Ryan A. Moore; Riley Morrison; Jeremiah Mwangi; Doreen Nakagaayi; Miriam Nakitto; Craig Sable; Amy Sanyahumbi; Rachel Sarnacki; Jenipher Thembo; Sophie La Vincente; David Watkins; Liesl Zühlke; Emmy Okello; Andrea Beaton; Judith W. Dexheimer

doi:10.1055/s-0043-1774812

Applied Clinical Informatics, Inhaltsverzeichnis

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

¹The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

²Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States

,

Jafesi Pulle

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Joselyn Rwebembera

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Jessica Abrams

⁴Division of Paediatric Cardiology, Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa

⁵Reach, Cape Town, South Africa

,

Jenifer Atala

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Emily Chesnut

⁶Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

,

Kristen Danforth

⁷Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States

,

Ndate Fall

¹The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

,

Nicholas Felicelli

⁶Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

,

Karen Lapthorn

⁶Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

,

Chris T. Longenecker

⁷Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States

,

Neema W. Minja

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Ryan A. Moore

¹The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

²Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States

,

Riley Morrison

⁶Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

,

Jeremiah Mwangi

⁸Reach, Geneva, Switzerland

,

Doreen Nakagaayi

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Miriam Nakitto

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Craig Sable

⁹Department of Cardiology, Children's National Medical Center, Washington, District of Columbia, United States

,

Amy Sanyahumbi

¹⁰Division of Pediatric Cardiology, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, United States

,

Rachel Sarnacki

⁹Department of Cardiology, Children's National Medical Center, Washington, District of Columbia, United States

,

Jenipher Thembo

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Sophie La Vincente

⁸Reach, Geneva, Switzerland

,

David Watkins

⁷Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States

,

Liesl Zühlke

¹¹Division of Cardiology and Paediatric Cardiology, Department of Medicine/Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa

¹²South African Medical Research Council, Cape Town, South Africa

,

Emmy Okello

³Uganda Heart Institute, Mulago Hospital, Kampala, Uganda

,

Andrea Beaton

¹The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

²Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States

,

Judith W. Dexheimer

²Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States

¹³Division of Emergency Medicine and Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

› Institutsangaben

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

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