The ethical development and sustainability of trauma registries in low- and middle-income countries

• Author / Creator

  Grant, Chantalle L

• Trauma registries are an anonymized, systematic, prospective data banks for trauma patients that may include details on demographics, injury details, hospital processes, and outcomes. They are an important component of trauma care systems and a tool for improving outcomes in trauma. Given the high rates of morbidity and mortality from trauma in low- and middle-income countries (LMICs), the implementation of trauma registries in LMICs is a growing area of interest; however, while many pilot trauma registries have been demonstrated to be feasible in LMICs, very few are sustainable in the long term. In this thesis, a trauma registry established in 2017 in Mbarara Regional Referral Hospital (MRRH), Uganda is examined. Since the establishment of this registry, data for over 3000 trauma patients has been collected, however, the registry faces questions of how to achieve long-term viability without the financial support of external partnerships. The aim of this thesis is therefore to evaluate several aspects of sustainability of trauma registries for low-income settings.

  First, the ethical importance of sustainability in global surgery was established through a scoping review on the literature on the ethics of global surgery. A grounded theory content analysis was completed to identify themes and gaps in the existing literature. Four major ethical domains in global surgery were identified: clinical care and delivery; education and exchange of trainees; research, monitoring, and evaluation; and engagement in collaborations and partnerships. While the literature on ethics in global surgery was sparse, mostly in the form of commentaries or editorials, and largely published by authors in high-income countries (HICs), the importance of including LMIC authors in the conversation on ethics in global surgery and the value of building sustainable collaborations and partnerships were key findings of this scoping review.

  Next, a literature review of considerations for the implementation of ethical and sustainable trauma registries in LMICs was completed. A number of practical challenges were identified for the development of trauma registries in LMICs and included funding sources, personnel requirements, technology access, and quality assurance mechanisms. Ethical considerations for trauma registry development were also identified, and included concerns of patient confidentiality, informed consent, and sustaining the registry. Strategies for these ethical and practical considerations for trauma registry development in LMICs are discussed, and opportunities for future research opportunities are explored.

  The widespread nature and accessibility of mobile phones in most low- and middle-income countries, including Uganda, makes the use of mobile phone technology in health a potential avenue for inexpensive health care innovation. A mobile application trauma registry was designed and implemented to minimize workload and contribute to sustainability of the registry. Healthcare workers involved in trauma then completed a validated questionnaire known as the Unified Theory of Acceptance and Use of Technology (UTAUT) for evaluating the usability of the mobile application trauma registry and predicting future use behaviours. Healthcare workers scored the mobile application highly, indicating a high potential for ongoing use. The UTAUT was also identified as a method for other trauma registries to predict future use and opportunities for sustainability.

  Finally, a potential means of financial self-sustainability for trauma registries in low-income countries was evaluated. In many public hospitals in low-income settings, government funding for patients seen is dependent on documentation of those patients. This study evaluated the improvements to patient documentation following the implementation of a trauma registry and concurrent patient registration system at MRRH. A significant improvement in patient documentation was found, with a 20-fold increase in trauma patients documented following the implementation of patient registration and a trauma registry. This more accurate documentation could then be used to apply for increased government funding for trauma patients and for sustaining the trauma registry in the long-term. The concurrent implementation of a patient registration system with a trauma registry therefore could be an avenue for financial viability for other trauma registries in low-income contexts.

  Taken together, these studies represent a compelling picture for the ethical imperative to develop sustainable trauma registries in LMICs and some of the strategies that may be undertaken to achieve this. By combining these techniques, we hope to achieve a sustainable, long-term trauma registry at MRRH that can serve as a model for other trauma registries in LMICs going forward.

• Subjects / Keywords

  • Uganda
  • Trauma Care Systems
  • Trauma Registry
  • Global Surgery
  • Sustainability
  • Developing Countries
  • Trauma
  • Low- and Middle-Income Countries
  • Ethics
  • Hospital-based Registries
  • Disease Registries
  • Trauma registries
  • LMIC

• Graduation date

  Fall 2020

• Type of Item

  Thesis

• Degree

  Master of Science

• DOI

  https://doi.org/10.7939/r3-2w8c-5n73

• License

  Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.