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Coversheet for Thesis in Sussex Research Online A University of Sussex DPhil thesis Available online via Sussex Research Online: http://sro.sussex.ac.uk/ This thesis is protected by copyright which belongs to the author. This thesis cannot be reproduced or quoted extensively from without first obtaining permission in writing from the Author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the Author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Please visit Sussex Research Online for more information and further details 1 The process and practice of diagnosis: innovations in diagnostics for Lassa fever in Sierra Leone Ann Wilkinson Thesis submitted for the Degree of Doctor of Philosophy January 2013 SPRU University of Sussex 2 WORK NOT SUBMITTED ELSEWHERE FOR EXAMINATION I hereby declare that this thesis has not been and will not be, submitted in whole or in part to another University for the award of any other degree. Signature:………………………………………................................................ 3 UNIVERSITY OF SUSSEX Ann Wilkinson Thesis submitted for the Degree of Doctor of Philosophy in Science and Technology Policy Research The process and practice of diagnosis: innovations in diagnostics for Lassa fever in Sierra Leone Summary This thesis is about the process and practice of diagnosis and the implications of new diagnostic technologies in low resource settings. As a setting and a disease which has seen significant investment in diagnostics, Lassa fever in Sierra Leone has been selected as a case study to examine these themes. In this thesis, 'new diagnostic technologies’ refers to laboratory-based diagnostics which are fast, reliable, accurate and can be used in low income settings. The starting point of this thesis is a narrative surrounding such technologies which suggests that they will revolutionise low income healthcare settings by allowing accurate scientific diagnosis in places where it was not possible before. Various perspectives on diagnosis are examined and some limitations are identified in relation to their accounts of diagnostic process, context, practice and technology. To explore the case, aspects of science and technology studies, the sociology of scientific knowledge and medical anthropology are combined. A multi-sited ethnography of Lassa fever diagnosis was conducted in three settings: a rural village, a laboratory and the wards of a hospital. Documents were reviewed and interviews conducted with key actors and ex-Lassa fever patients. Analysis focused on framings (partial and subjective interpretations), narratives (persuasive storylines which make use of particular framings) and practice in relation to Lassa fever and the development of technology for its diagnosis. Assumptions about the disease, diagnostics and the process of diagnosis are identified and the conclusion considers how they compare with practice in each setting. This thesis argues that diagnosis is a complex negotiated process and that new diagnostics represent only one aspect of that process. Thus, they are not a ‘silver bullet’ to transform low resource healthcare contexts. In particular, ‘improved’ diagnostics do not always have the expected impacts, sometimes even introducing complexity and uncertainty. In challenging narratives about diagnostics, this thesis provides an alternative, practice-based, approach to thinking about diagnostics and innovations in health systems; this approach acknowledges the importance, and complexity, of the diverse contexts which shape innovations and technology use. 4 Acknowledgements In completing this doctorate I have had a lot of help. Over the course of my fieldwork I was the recipient of more goodwill than I could ever begin to repay. Countless people took me into their homes, gave up their beds, fed me and shared aspects of their lives with me. Above all, I am grateful to the inhabitants of the village where I did my community level research. Short though it was, the warmth which I was greeted with made it an experience like no other which I am honoured to have had. Noah and Abebatu, and all their children, deserve my deepest thanks: I miss you all greatly. At Kenema Government Hospital and Panguma Hospital I would like to thank the clinical staff and members of the Lassa fever team who were so tolerant of my presence. Researchers associated with Tulane University were incredibly welcoming and generous with their time. At the Tulane house, Jeneba and Sheku looked after me and I valued their company enormously. I consider myself very lucky to have had Melissa Leach and Paul Nightingale as my supervisors. I suspect that without their guidance this process would have been much more of a struggle. Their considerable insights have turned my muddled ideas into something which (hopefully) resembles a thesis. Melissa and Paul, thank you, I have really enjoyed working with you both. Funding from the ESRC made this PhD possible. The opportunity to be part of the STEPS centre and SPRU has been privilege. Both institutions are incredibly collegial and have changed the way I view the world. Fellow researchers and students at SPRU ensured this process was never lonely. Having attended the University crèche and nursery as a child I swore that I would never study at the University of Sussex, but I am very glad that I did. At SPRU, Janet French’s support has made my progression through various official stages easy. In fact, she has saved the day a number of times. Friends and family have provided the right balance of support and distraction. My oldest, most wonderful, friends have a capacity to make me happy like no one else. Bella in particular set me on the path to Sierra Leone and has shared much of this experience with me. Anna 5 went through all of the ups and downs with me; sympathising, understanding, being a stalwart supporter and friend, and crucially, ensuring that I had enough non-PhD fun. Javi made the end of this far easier and more bearable than it could have been, helping me out with basic arithmetic, providing coffee to wake up and good company to unwind. Lina’s encouragement was vital, especially as I tried to get my head round the science bits and form some kind of argument. My Dad sent a care package to me in Sierra Leone which I will never forget, and his regular phone calls brightened up time spent away from home. When it came to the crunch I had help in copy-editing from Andy, Anna, Bella and my Mum. More than anyone, my devoted Mum has given up her time to talk and read bits of this thesis, providing invaluable advice along with food and board. George and Geraldine have cheered me along (and George has provided top quality computer assistance) while my first nephew Owen has provided a very good excuse to finish. Finally, I would simply like to thank my Mum and Dad for being such loving and supportive parents. 6 Contents SUMMARY.................................................................................................................................................. 3 ACKNOWLEDGEMENTS ......................................................................................................................... 4 CONTENTS .............................................................................................................................................. 6 LIST OF FIGURES ................................................................................................................................... 9 LIST OF TABLES ..................................................................................................................................... 9 ABBREVIATIONS AND ACRONYMS .................................................................................................... 10 1 INTRODUCTION .......................................................................................................................... 12 1.1 WHY DIAGNOSTICS? ........................................................................................................................ 14 1.2 WHY LASSA FEVER IN SIERRA LEONE? .............................................................................................. 16 1.3 OUTLINE OF CHAPTERS .................................................................................................................... 19 2 UNDERSTANDING DIAGNOSIS, DIAGNOSTICS AND DISEASE ................................................. 22 2.1 FRAMINGS AND NARRATIVES ........................................................................................................... 23 2.1.1 A ‘scientization’ of diagnosis? ................................................................................................. 25 2.2 THEORIES OF DIAGNOSIS .................................................................................................................. 28 2.2.1 Sociology of diagnosis and contesting disease....................................................................... 29 2.2.2 Process of diagnosis: assemblages and enactments .............................................................. 31 2.2.3 Negotiating plural health systems ......................................................................................... 35 2.2.4 Diagnostic technology ............................................................................................................ 38 2.2.5 Challenging uncertainty narratives ......................................................................................
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