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Enhancing Care for Urban Poor Living with Chronic Conditions: Role of Local Health Systems

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Enhancing Care for Urban Poor Living with Chronic Conditions: Role of Local Health Systems Faculty of Medicine and Health Sciences Department of Public Health Enhancing care for urban poor living with chronic conditions: role of local health systems Upendra Bhojani Thesis submitted in fulfillment of the requirements for the degree of Doctor of Health Sciences Promoters: Prof. Stefaan De Henauw (promoter) Ghent University, Ghent, Belgium Prof. Patrick Kolsteren (co-promoter) Ghent University, Ghent, Belgium Dr. N Devadasan (co-promoter) Institute of Public Health, Bangalore, India ISBN: 9789078344445 Legal Deposit Number: D/2016/4531/2 Appeared in the series Monographs of the Department of Public Health, Ghent University Photos including on the cover are by Bhargav Shandilya ! " Chair Prof. Koen Van Herck Department of Public Health, Ghent University, Ghent, Belgium Members Prof. Sara Willems Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium Prof. Lucas Van Bortel Clinical Pharmacology Research Unit, Heymans Institute of Pharmacology, Ghent University, Ghent, Belgium Prof. Bruno Lapauw Department of Endocrinology, Ghent University, Ghent, Belgium Prof. Jean Macq Faculty of Public Health, Dean, Institut de recherche santé et société, Université catholique de Louvain, Brussels, Belgium Prof. C A K Yesudian Retired as Dean, School of Health System Studies, Tata Institute of Social Sciences, Mumbai, India $ PREFACE My decision to embark on a PhD journey has a lot to do with the Institute of Public Health (IPH), a not-for-profit organization based in Bangalore, engaged in public health research, training and advocacy. After working as a dentist at a teaching–hospital in western India, I decided to go for a Master in Public Health at the Deakin University (Australia) in 2005. Joining IPH upon my return to India was my official entry into public health practice. Since my dentistry days, I have taken great interest in promoting tobacco control as a researcher and an activist, in addition to my work on health systems. In 2008 the issues of urban poverty and intra-urban inequities in access to healthcare surfaced in the Indian public debate with the national government proposing a flagship program – the National Urban Health Mission – to provide healthcare to the urban poor. While the Mission would take a few more years to materialize, some of us at IPH already started to engage in this debate. In Bangalore, we would routinely witness pockets of visibly poor areas in an otherwise sprawling metropolis. After initial exchanges with other organizations engaged in working with urban poor and a few exploratory visits to poor urban quarters in the city, IPH launched a long- term project in KG Halli, a poor neighborhood situated in one of the administrative units of Bangalore city. The purpose was to explore meaningful ways of working with local residents, healthcare providers and health authorities in order to improve people’s access to quality healthcare. As no data was available on the population and its health profile, we started with the organization of a house-to-house survey of the entire neighborhood, eventually covering 9 299 households. We tracked demographic details, self-reported illness profiles, health seeking practices and healthcare expenditures. This survey was conducted with the help of a small group of women from the neighborhood itself. These ladies would gradually become local community health workers, the very backbone of the project. The survey revealed that residents commonly reported chronic conditions like hypertension and diabetes, which were previously considered to be problems mainly affecting the wealthy. It is at this stage that my interest in tobacco-related diseases and health systems converged. I seized the opportunity of a “sandwich” PhD program, as part of the institutional collaboration between IPH and the Institute of Tropical Medicine (ITM) in Antwerp. In consultation with my KG Halli project colleagues, I decided to go for a study of the role of local health systems in improving healthcare for urban poor facing chronic conditions. The groundbreaking initial work of my colleagues not only helped me to frame my PhD research (the survey substantially contributed to measuring the burden of chronic conditions in the neighborhood), but they would eventually also turn into co-researchers making it possible for us to conduct a number of other studies in KG Halli. The project is still ongoing, integrating results from my PhD, but also incorporating actions on other challenges of the harsh community life in KG Halli. This collaborative PhD research between IPH (Bangalore), ITM (Antwerp) and the Ghent University (Ghent) adds to (limited) existing evidence on the management of chronic conditions at local health system level in India. I hope it will stimulate further interest in local health systems and contribute to providing useful insights in the implementation of government & initiatives aimed at improving care for chronic conditions in India, specifically targeting the urban poor. At my home institute, IPH Bangalore, we look forward to continuing this work on chronic conditions at two levels. Firstly, at policy level, we are currently exploring the impact of non- health sectors on the prevention and management of chronic conditions. And secondly, at the operational level, we aim to investigate and test models for integrated (health and social) care of chronic conditions. Upendra Bhojani Antwerp 03/09/2016 ACKNOWLEDGEMENTS After an intensive long period of six years that I spent working on this thesis, the day finally comes, when I am writing the last piece – a thank you note. This journey has taught me a lot, both at professional and personal level. The thesis has had a huge impact on me. But this became possible through guidance and support of the many people who helped me, in small and big ways, throughout this period. First and foremost, my deepest gratitude goes to the urban health project team in KG Halli – Roopa Devadasan, Thriveni S Beerenahally, Amruthavalli S and Munegowda CM, later joined by Mrunalini Gowda – for their immense support and acceptance, and for being an active part of this journey, which otherwise would have been impossible. A special thanks to Roopa for the insightful dialogues we always had while on the two-wheeler journeys to KG Halli. They made me wiser. A team of wonderful women community health workers, the backbone of the KG Halli project, not only made data collection possible but also contributed in framing the work through their life experiences. So, my sincere thanks to Nagarathna, Leelavathi, Tabassum, Josefien, Revathi, Sujatha and Anthoniyamma. Of course, this work would not have been possible without the residents of KG Halli, and particularly the diabetes patients, who welcomed us to their homes and shared their lives with us. Similarly, the local healthcare providers played an equally important role. They welcomed us in their consultation rooms and shared their views. As I count their names in my mind to protect their privacy, my deep gratitude goes to them. Particular thanks goes to Dr. N Devadasan of the Institute of Public Health (IPH). In some sense, he was ‘Deva’ to me, a name he likes to be called as, which also means a deity in Hinduism. Quite naturally I went to him when I got this crazy idea of doing a PhD, and when my scholarship ran out, and every time I was in a difficult situation. He was there, always. His vast experience helped me keep my work firmly rooted in the Indian context. I thank Prof. Patrick Kolsteren of the Institute of Tropical Medicine (ITM), who put faith in me and supported my candidature for a PhD. His inputs in selecting research design and methods were vital. He gave me courage to not to give up on the intervention study and encouraged me to write more. My deep gratitude to Prof. Stefaan De Henauw of Ghent University for agreeing to supervise my work, even though I was probably not the best fit in his unit. But he saw meaning in the kind of work I was into. He not only helped me on the scientific front, but also ensured that I navigated and met several university requirements while being in India for most of the time. I sincerely thank Prof. Bart Criel, who encouraged me to take up a PhD in the first place and supported my candidature at ITM. For all practical purposes, he was one of my supervisors. His experiential insights on health systems organization were crucial in shaping my work. It was always refreshing to visit his place in Bazel every now and then, where Goedele would lovingly ensure that I get my quota of yummy Belgian ice cream every time. I want to thank Werner Soors for countless things. He has been a mentor and a true friend. His place in Antwerp has been a home away from home. He has a played a major role not only in my PhD but also in shaping my career in public health. My thanks to Arima Mishra, who gently and ably introduced me to the world of sociology and anthropology. The interactions with my colleagues and friends over time helped directly or indirectly in this work. Thanks to colleagues at IPH for their inputs. Thanks to Prashanth N S for providing useful inputs on my writings. At ITM I would like to thank Roos Verstraeten, Valéria Campos Da Silveira, Josefien Van Olmen, Carl Lachat, Bruno Marchal, Kimberley Bouckaert, Fahdi Dkhimi and Dominique Roberfroid. At Nature Conservation Foundation: Suhel Quader and Umesh Srinivasan. Thanks also to colleagues who worked with me on several projects at IPH during my PhD time. They gave me space to work on PhD by sharing my project responsibilities. Thanks to Isa Bogaert, Renilde Everaert, Lieve De Greef, Jos Assayag, Monique Ceulemans, Ann Verlinden, Rita Verlinden, Linde De Kinder, Fiona Robertson, Patricia Braat, Helga Bödges, Annelies Croon, Mia Bellemans, Kristien Debrock, Gajalakshmi and Mallesh for their secretarial and logistic support over time.
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