Development, Implementation and Utilisation of a Mobile Technology
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Faculty of Health Sciences School of Nursing, Midwifery and Paramedicine Development, Implementation and Utilisation of a Mobile Technology Enhanced, Electronic Medical Record/Clinical Decision Support System for the Co-management of HIV and Pregnancy Neel Arant Bandy This thesis is presented for the Degree of Doctor of Philosophy of Curtin University December 2017 1 Author’s Declaration To the best of my knowledge and belief this thesis contains no material previously published by any other person except where due acknowledgment has been made This thesis contains no material which has been accepted for the award of any other degree or diploma in any university. The research presented and reported in this thesis was conducted in accordance with the National Health and Medical Research Council National Statement on Ethical Conduct in Human Research (2007) –u updated March 2014. The proposed research study received human research ethics approval from the Curtin University Human Research Ethics Committee (EC00262), Approval Number # HR 211/2013 Neel Arant Bandy 20/12/2017 Abstract Perinatal antiretroviral therapy can virtually eliminate perinatal transmission of HIV. Extending appropriate application of ART and management of co-morbidities during pregnancy to women living with HIV in underserved settings remains a challenge. Mobile health (mhealth) technologies have been shown to improve ART therapy initiation and adherence, and improve pregnancy outcomes by extending the healthcare workforce via task-shifting and facilitating decentralisation of care, improving data and information access, patient-provider communication, consultation and referral capabilities and data mining and analysis. A mobile technology enhanced, cloud-based, combined electronic medical record (EMR) and passive/active clinical decision support system (CDSS) focused on the antepartum co-management of HIV and pregnancy with birth, breastfeeding, post partum and newborn care planning for point of care use by the clinician was developed and piloted at Kakamega County General Hospital’s antenatal care clinic in Kenya. The record has graphic patient education materials and allows for extensive data mining via an application program interface (API). The EMR/CDSS was developed using the open source, OpenMRS software and the CIEL/MVP concept dictionary. The EMR/CDSS guides the clinician through all aspects of antenatal and HIV care and provides information tabs which reveal diagnostic and treatment information for HIV, opportunistic infections, laboratory analysis, and birth, post partum and newborn management derived from WHO, Kenyan NASCOP, NICE, CDC, Australian and NIH guidelines. Alerts to missing appointments and clinical information and abnormal values provide the active CDSS elements. The system was used on Chromebooks at the point of care in the Maternal Child Health clinic with pregnant women living with HIV. The Chromebooks connected to the server located in Kakamega Town through a virtual private network (VPN) using 3G wireless broadband technology. Funding challenges delayed the start of the project and led to organisational challenges as the umbrella organisation for the study disbanded. Weather related and Internet service provider related technical challenges delayed the pilot, caused communications failures and undermined record utilisation and supervision during the pilot. The lag between training and implementation, unfamiliarity with laptops, sub-par oversight of clinical staff and project management staff and time constraints undermined proper record utilisation. When utilised, clinical staff reported improvement in data completeness and decision-making secondary to the CDSS elements. 3 Recommendations for future implementations include using the digital design principals, keeping the knowledge base up to date in a routine fashion, ensuring consistency in programming, operating within an established framework for project management and funds distribution or ensuring that the project has the required funding and time needed to confront and contend with technical and project management challenges, ensuring adequate project management and record utilisation oversight and taking a long term view of the project output. Acknowledgements My deepest gratitude to the people living with HIV throughout the world, upon whose lives rested and rest the progress that has been made and is still to be made in the face of this epidemic. Many thanks to my supervisor Jaya Dantas, whose tutelage and advice helped me along this journey as both a doctoral student and human being. To John Haskew and Gunnar Rø of Uamuzi Bora who provided me with both a home and platform for this project and continued to supply me with labour, guidance and advice throughout the toughest of times though your professional journeys had long since deviated from UB, thank you. To Peter Waiganjo Wagacha, thank you for acting as my in- country advisor and for your expertise within this realm, and particularly within Kenya. To Collins Otwane, thank you for your hard work and going through this journey alongside me, I wish you all the best in your own future as a researcher. To Gavin Leslie, thank you for your support of my project, even when it seemed far-fetched. To John Katieno and Norbert Glen, thank you for your programming expertise. To Carrol Ngutu, Nancy Ondieki and Vestergaard Africa, Ltd, without your hard work and support, this project would not have been possible. Many thanks to my family members and friends in Australia, the USA and further afield who supported me during this journey. This research was supported by the Australian Postgraduate Award, the Curtin University School of Nursing, Midwifery and Paramedicine Grant and the Curtin University Postgraduate Students Association Grant. 5 Dedication This PhD thesis is dedicated to people living with and who have lived with HIV and to the tireless and passionate activists, researchers, practitioners and politicians whose vision has lead to the progress that we see today. Finally, this thesis is dedicated to my son Julian. Table of Contents Author’s Declaration .................................................................................................................... 2 Acknowledgements ...................................................................................................................... 5 Dedication ..................................................................................................................................... 6 Table of Contents .......................................................................................................................... 7 List of Figures ............................................................................................................................. 14 List of Abbreviations .................................................................................................................. 15 Chapter 1 Overview of the thesis ............................................................................................ 17 1.1 Introduction to the chapter .............................................................................................. 17 1.2 Background to the study ................................................................................................. 17 1.3 Aim and objectives ......................................................................................................... 19 1.4 Justification ..................................................................................................................... 20 1.5 Significance .................................................................................................................... 21 1.6 Overview of the study location ....................................................................................... 21 1.7 Overview of the thesis .................................................................................................... 22 Chapter 2 The HIV/AIDS Pandemic ....................................................................................... 24 2.1 Introduction to the chapter .............................................................................................. 24 2.2 The early history of the HIV epidemic ........................................................................... 24 2.3 Immunology of HIV infection and principals of antiretroviral therapy ......................... 26 2.3.1 Transmission ............................................................................................................. 26 2.3.2 Infection and viral replication ................................................................................... 27 2.3.3 Immune response to HIV infection ........................................................................... 31 2.3.4 The homeostatic period ............................................................................................. 31 2.4 The clinical course of natural HIV infection .................................................................. 32 2.4.1 Initial infection .......................................................................................................... 32 2.4.2 Homeostasis .............................................................................................................. 32 2.4.3 Reactivation .............................................................................................................. 33 2.5 Diagnostic tools, WHO clinical staging, immunologic