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Phd Thesis, Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden

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Phd Thesis, Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden Durham E-Theses Supporting Ambulance Crews Electronically through the Provision of `On-Demand' Patient Health Information ALTUWAIJRI, EMAN,ALI,S How to cite: ALTUWAIJRI, EMAN,ALI,S (2018) Supporting Ambulance Crews Electronically through the Provision of `On-Demand' Patient Health Information, Durham theses, Durham University. Available at Durham E-Theses Online: http://etheses.dur.ac.uk/12754/ Use policy The full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission or charge, for personal research or study, educational, or not-for-prot purposes provided that: • a full bibliographic reference is made to the original source • a link is made to the metadata record in Durham E-Theses • the full-text is not changed in any way The full-text must not be sold in any format or medium without the formal permission of the copyright holders. Please consult the full Durham E-Theses policy for further details. Academic Support Oce, Durham University, University Oce, Old Elvet, Durham DH1 3HP e-mail: [email protected] Tel: +44 0191 334 6107 http://etheses.dur.ac.uk 2 Supporting Ambulance Crews Electronically through the Provision of ‘On-Demand’ Patient Health Information Eman Ali Altuwaijri A Thesis presented for the degree of Doctor of Philosophy Supervised by Professor David Budgen Dr Sharyn Maxwell Innovative Computing Group School of Computer Science United Kingdom 2018 ÕækQË@ á ÔgQË@ é<Ë@ Õæ . Dedicated to My Mother and Father, My daughters Dana and Lina Declaration The work in this thesis is based on research carried out at the Innovative Com- puting Group, the School of Computer Science, United Kingdom. No part of this thesis has been submitted elsewhere for any other degree or qualification and it is all my own work unless referenced to the contrary in the text. Copyright c 2018 by Eman Altuwaijri. “The copyright of this thesis rests with the author. No quotations from it should be published without the author’s prior written consent and information derived from it should be acknowledged”. iv Acknowledgements First of all it is Allah, The Most Graceful and the Most Merciful who gave me everything, including the strength and patience to accomplish my dream. Thank you to every single person I encountered within the North East Ambu- lance Service NHS Foundation Trust, especially Graham McClelland, Soniay Byres, Marc Birkett and all operational and senior management staff. I sincerely salute the ambulance crews and the supporting staff from the control centre, for their heroic job they do, helping and saving people’s lives. I am grateful to James Cook University Hospital NHS Foundation Trust for giv- ing me this opportunity and support, especially Dr Simon Taggart and the support from Elaine Hall and the ED staff. Cliff Challenger from Epilepsy Action offered great help and support as well as Adam Nobel from the International League Against Epilepsy- Epilepsy Chapter. Many thanks go to all the people with epilepsy and their carers who shared with me, their personal views, experience and stories. Thank you to Taiib Obadje who helped me tremendously in the IB development. My heartfelt appreciation goes to Durham University and the diverse City of Durham, for giving me a wonderful experience that I will always cherish enabling me to meet wonderful individuals from all walks of life. Thank you to my precious friends, my extended family, Dr Andrew Crossland, Rukiya Sood, Dr Aswila Sood, Frank Coppuck, Ibrahim and Ijjou Thompson, and Dr Fatima Almazkuri. I cannot adequately express my deep love for you all. v Never will I ever forget the continuous and generous support, discussions, time, advice and efforts of my supervisors Professor David Budgen and Dr Sharyn Maxwell. No words or actions can show how grateful and thankful I am. I have been extremely fortunate to have you as my friends and supervisors. I have love and respect for you both. Words cannot describe the gratefulness and appreciation I owe to my mother Norah Altuwaijri and my father Professor Ali Altuwaijri, who supported me through thick and thin during this long journey of my PhD. I love you beyond love itself. Thanks to my brother Dr Mohammed Altuwaijri for his support and cooperation, it means a great deal to me. My endless love and passion goes to my two beautiful smart daughters, Dana and Lina who were patient and always put a smile on my face when things were low. You are the best thing that ever happened in my life.. vi Supporting Ambulance Crews Electronically through the Provision of ‘On-Demand’ Patient Health Information Eman Altuwaijri Submitted for the degree of Doctor of Philosophy 2018 Abstract The North East Ambulance Service (NEAS) does not have direct access to any information regarding patient health history, current medication, allergies, etc. that might assist an ambulance crew when they are dispatched to an emergency incident. Therefore, an ambulance crew responding to a call-out usually travels to the incident ‘information blind’ regarding the patient’s general health status. What makes the ambulance service in general, and the ambulance crew in particular, unique from other healthcare organizations is the spectrum of exposure to a diversity of health organizations (care homes, GPs, hospitals, etc.), and none-health organizations (po- lice, social services, fire forces,etc.). This thesis describes an investigation into the feasibility of implementing a soft- ware Information Broker (IB) prototype, that has the ability to provide ‘on-demand’ electronic health information to ambulance crews while on scene, by accessing a set of autonomous databases containing patient records. This is to support the ambulance crew with reliable patient information in order to assist their decision-making pro- cess, therefore, reduce unnecessary patients’ conveyance to the Emergency Depart- ment (ED). The thesis also examines the sociotechnical issues surrounding health information transfer between and within the National Health Service (NHS) in the United Kingdom (UK) for patients with epilepsy (PWE), specifically in the North East region of England. A case study approach was employed as an overarching framework for the fea- sibility study of the IB prototype. This case study was centred upon studying the needs of people with epilepsy (PWE), as this group has been identified by NEAS as frequent users of the ambulance service. In many cases, if the ambulance crew are given adequate information to support their decision-making, they do not need to convey patients to a hospital ED unless necessary. Within the case study, a phenomenological approach was employed for the set of perspectives used for inves- tigating the sociotechnical issues surrounding the IB. The three perspectives were the perceptions of NEAS operational and management staff, those of the JCUH staff and PWE/carers, and finally, the perceptions of the ambulance crew. The prototype IB technology has demonstrated the feasibility of using an in- formation transfer broker to transfer information from autonomous organizations to the ambulance crew on scene. Overcoming technical challenges alone is not sufficient for this success. Stakeholders’ requirements, organization collaboration, compliance with national standards and targets, social and technical aspects, and so forth, are other issues that have been considered. Involvement of potential stakeholders in stages of any Health and Information Technology (HIT) development is an essential element to be included, as much as possible, to satisfy those requirements and needs of end-users. Improving the data availability to the ambulance crews on scene via an IB, means that they can perform better decision-making while on scene with a patient. The demonstration of the IB prototype has shown its potential for transferring pa- tient health information from an autonomous database to ambulance crews. To increase opportunities of success, shared incentives and aims of the intra- and inter- organizational communication and collaboration should facilitate the implementa- tion of HIT. Facilitating incremental improvements of systems and technologies may have an effect on the organization as a whole in terms of robustness of systems and technologies. viii Table of Contents Page Declaration iv Acknowledgementsv Abstract vii List of Figures xvi List of Tables xviii List of Abbreviations xix Chapter 1: Introduction2 1.1 Context................................... 3 1.1.1 Why Epilepsy? ........................... 6 1.2 A Proposed Solution............................ 8 1.3 Information Transfer Systems for Ambulance Related Incidents Involv- ing Epilepsy ................................ 11 1.4 Aim of the Study.............................. 13 1.4.1 Research Questions......................... 13 1.4.2 Expected Benefits.......................... 13 1.5 Thesis Structure .............................. 14 Chapter 2: Epilepsy 17 2.1 What is Epilepsy? ............................. 18 2.2 The Effects of Epilepsy on Patients’ Lives................ 20 2.3 Healthcare System Factors Affecting the Care of PWE......... 23 ix Table of Contents x 2.3.1 The Policy Level .......................... 25 2.3.2 The Healthcare Organization Level ................ 27 2.3.3 The Patient Interaction Level ................... 29 2.4 Involvement of Ambulance Services and NEAS in Particular . 32 2.4.1 User Perspectives on the Ambulance Service........... 35 2.5 Gaps Related to PWE........................... 36 2.6 Summary.................................. 38 Chapter
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