THE PALGRAVE HANDBOOK OF GLOBAL HEALTH DATA METHODS FOR POLICY AND PRACTICE Edited by Sarah B Macfarlane and Carla AbouZahr The Palgrave Handbook of Global Health Data Methods for Policy and Practice Sarah B Macfarlane • Carla AbouZahr Editors The Palgrave Handbook of Global Health Data Methods for Policy and Practice Editors Sarah B Macfarlane Department of Epidemiology and Biostatistics School of Medicine, and Institute for Global Health Sciences University of California San Francisco San Francisco, CA, USA Carla AbouZahr CAZ Consulting Sarl Bloomberg Data for Health Initiative Geneva, Switzerland ISBN 978-1-137-54983-9 ISBN 978-1-137-54984-6 (eBook) https://doi.org/10.1057/978-1-137-54984-6 Library of Congress Control Number: 2018953994 © The Editor(s) (if applicable) and The Author(s) 2019 The author(s) has/have asserted their right(s) to be identified as the author(s) of this work in accordance with the Copyright, Designs and Patents Act 1988 This work is subject to copyright All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed The use of general descriptive names, registered names, trademarks, service marks, etc in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations Cover illustration: Claudio Ventrella This Palgrave Macmillan imprint is published by the registered company Springer Nature Limited The registered company address is: The Campus, Crinan Street, London, N1 9XW, United Kingdom Foreword Investing in Global Health Information Systems: Learning from Nature Countries and agencies have endorsed 17 Sustainable Development Goals and their associated 169 targets and 232 indicators Now the global development community needs to invest—locally, nationally, and globally—to monitor and assess progress When a potential pandemic, such as Ebola or Avian Influenza, strikes, questions are asked about the performance of public health surveillance and response systems and how much should be invested in them It’s time for us to walk our talk It’s time to invest adequately in our health information systems at all levels Unless we so, our global commitments will be just empty talk Those working in global public health and statistics have much to learn from nature The human body is one of nature’s most complex systems with more than 20 organ systems and sub-systems working in a concerted manner effectively to maintain life How can these diverse systems work together harmoniously? Only because nature invests continuously in information systems and feedback loops Consider nature’s investment in the nervous system which transmits data and information continually from conception to the last moments of life While the human brain constitutes only per cent of body weight, it consumes 25 per cent of the body’s daily energy Over 100 billion neurons connect through axons and dendrites to synapse with many other neurons, and every second the body transmits data by way of electrical signals that allow the nervous system to receive, analyse, and synthesize information, and v vi Foreword react accordingly Other information systems, such as the immunological, biomedical, and hormonal systems, all contribute to maintain the functioning of the body For example, when the immunological surveillance system senses alien pathogens, allergens, or cancerous cells, it triggers immunologic responses to remove them Are we ready to follow nature and direct 25 per cent of total health investments to health information systems? And if so, where should those investments be directed? The two editors of this volume have between them decades of experience working with health information and statistics systems Sarah Macfarlane led establishment of the Mekong Basin Disease Surveillance Network, which has built trust among disease surveillance and control experts of six Greater Mekong sub-region countries Today these national experts share information about disease outbreaks with their peers in a prompt and timely manner, communicating information electronically and by phone and bringing together cross-border teams of experts to collect samples, identify possible contacts, and look for new cases This immediate response is possible because of trustbased systems built through long-term collaboration that ensures reliability, credibility, and partnership based on public- not self-interests Carla AbouZahr, when she worked at the World Health Organization, led the start-up phase of the Health Metrics Network which, despite lasting for only eight years, has laid strong foundations for health information systems in many countries The network created standards for national health information systems that set the foundation for ongoing efforts by multiple countries and development partners to improve health information, including the multi-partner Health Data Collaborative Together, the editors have mobilized the wisdom of more than 50 global experts to write and prepare the Palgrave Handbook of Global Health Data Methods for Policy and Practice This handbook provides the best answer to the question about what and how to invest in generating data to inform health policy The handbook serves three main purposes It describes technical aspects of data sources and identifies capacity gaps for generating data It highlights the importance of synthesizing and communicating evidence to policymakers and how to use evidence to influence policy Finally, the handbook provides recommendations on how to improve the quality of data and information systems especially in low- and middle-income countries My recommendation for this book is based on my four views of global health First, global health is the platform to make the world safer for all through global collaboration—this handbook underlines the necessity of creating country data architecture and platforms that link databases across the globe Foreword vii Second, global health enables countries and non-state actors to protect their national interests—the handbook describes methods for collecting and analysing data that will support member states when they propose resolutions on the global health stage Third, global health enables countries to showcase their best practices—this handbook covers the disciplines that enable country healthrelated data to become global health data to be used to improve people’s health Finally, global health is the process of building long-term sustainable capacity—the handbook contributes to improving skills and capacities that will ensure a shared global voice in development and implementation of evidence-based health policies and practices. This handbook not only guides the reader to develop a health information system but, more importantly, it provides advice and examples about how to ensure that the information generated is fed into decision-making and implementation to improve health This is a must read and must use handbook for health systems workers, researchers, managers, and decision-makers!!! Suwit Wibulpolprasert Senior Advisor on Global Health Ministry of Public Health Bangkok, Thailand etter Data for Better Health: An Ongoing B Imperative Data have driven advances in health since the early days of modern medicine People live longer and healthier lives today because of pioneering work to collect and analyse data on the causes of disease and death and to generate evidence about interventions to prevent them During the nineteenth century, Louis Pasteur and Robert Koch identified the pathogens involved in major infectious diseases such as anthrax, tuberculosis, and cholera John Snow used mapping techniques to identify the sources of cholera in London Florence Nightingale, renowned for her nursing skills, was a consummate statistician and developed innovative techniques for presenting data to elicit policy responses Today, advances in statistical and epidemiological methods have vastly enhanced the availability and quality of health-related data But these advances are not evenly spread Many low- and middle-income countries have limited capacities to produce and use data to underpin decision-making viii Foreword The situation within countries is worse: the data needed to identify and target marginalized and hard-to-reach population groups are not widely available New challenging health conditions continue to emerge, both in relation to infectious diseases but also non-communicable diseases such as cancer, diabetes, and cardiovascular conditions Addressing the environmental, social, and economic determinants of ill-health is central to continuing improvements in health status These developments have profound implications for the data systems needed to identify and plan remedial action and to monitor progress and effectiveness The continuous accumulation of data and statistics creates accountability by providing evidence of what works, what does not work and, more importantly why so The editors of this book have brought together a diverse group of authors whose rich perspectives on the generation and use of data across the health spectrum represent the most comprehensive description of health-related information systems yet available The core theme that unites the chapters is that reliable data and statistics are public goods, essential for the maintenance and improvement of the health of the world’s peoples Good governance and sound administration depend on reliable information, a perception that led the post-apartheid government of South Africa to overhaul the existing health information and statistical systems Governments are primarily responsible for creating the conditions for accessible and responsive health systems and for ensuring that the basic sources and methods of statistics and epidemiology are in place This handbook describes the essential building blocks of information covering tried- and-tested methods of data collection, such as the population census, as well as methodological innovations, such as spatio-temporal techniques and statistical modelling, and good practice such as publishing open data It is a health imperative to adopt a systems approach to health and take full advantage of global good practices in health-related data and statistics The global health and statistical communities must provide countries with technical expertise and resources and support for capacity development at both individual and, critically, institutional levels The generation and use of data for health policy—on inputs, processes, outcome, and impacts—is a human endeavour that must be collaborative, involving stakeholders across sectors locally as well as nationally and internationally Data must be owned and used locally but also shared widely As noted by the authors of these chapters, only through active citizenry will it be possible to improve health o utcomes, health systems, health inputs, and ultimately achieve universal health care and equity This book sets the roadmap for this glorious promise It will be of interest to decision-makers and scholars of Foreword ix public policy It is a manifesto for health activism and a source of information and knowledge that all who wish to promote health will appreciate Pali Jobo Lehohla Oxford Poverty and Human Development Initiative Oxford, UK vercoming the Data Poverty Divide: Time O for Structural Adjustment The Palgrave Handbook of Global Health Data Methods for Policy and Practice is a very welcome and timely source of thinking and wisdom in this rapidly changing field While global health might reasonably be taken to include the entire world, in reality major differences in the quality and quantity of health data continue to follow global economic divides Thus historically poor countries in many cases continue in health data poverty—at the same time as facing some of the greatest global challenges in providing health services While the overall scope of the handbook is huge, and can by no means be summarized here, there are three structural issues in the field of global health data that seem particularly important: • In today’s world, the agenda against infectious diseases is progressing but is by no means concluded Life expectancy is increasing, with the consequence that more people are living to ages where non-communicable disease risks increase, just as many population-based risks such as exposure to processed foods and sugary drinks are increasing Hence global health parameters in particular settings can change rapidly, and if local population-based data are not available, such changes cannot readily be tracked In particular, elaborate mathematically modelled estimates of global health data can often be insensitive to short-term local changes because of inherent inertia in the underlying models • The technical history of data is also relevant Until the very end of the twentieth century, computing power for handling large databases was very limited compared with today’s standards At the same time, health data expertise was typically manifested among statisticians, demographers, and epidemiologists who had no formal training in informatics and computing but who comfortably handled datasets on a few hundreds or thousands of subjects Now desktop computers can handle datasets with many millions of records in real-time But human capacity development for handling the x Foreword so-called big data on global health sensibly and effectively lags far behind, especially in Africa • Access to health data as a global good is an increasingly important issue Developments such as the International Network for the Demographic Evaluation of Populations and their Health (INDEPTH) Network’s public data repository, supported by the Wellcome Trust, are key to achieving an open data environment that facilitates the effective use of data for policy purposes At the same time, such initiatives need to be balanced by capacity building for analysis and interpretation in local academic and government institutions so that data can be made to talk in their own contexts Reverting to historic norms of exporting data into better-resourced but far-away analytical environments is simply unacceptable There is now little more than a decade to run before the 2030 endpoints of the United Nations Sustainable Development Goals Global understanding of the preceding Millennium Development Goals was compromised to some extent by a lack of appropriate local data and analytical capacity, and the world cannot afford to repeat the same mistake This handbook is therefore an important milestone in the quest to move the field of global health data methods forward—but substantial further investment and progress is required Peter Byass Professor of Global Health, Umeå University Umeå, Sweden 518 Index Health information systems (HISs) (cont.) conflicting information, 475 data ownership, 479 data security, 474–475 definition of, evolution of, 4–7 financial and technical support, 500, 501 governance and coordination, 15–17 health inequities, addressing, 479, 480 health information and health system, 7–9 multi-sectoral statistical systems, 12–13 Health Labour Market (HLM), 229 Health management information systems (HMIS), 5, 14, 15, 104, 165–179 culture for data, 177–178 definition of, 166–167 innovations and transformation, 173–177 limitations and challenges for, 171–173 reform, in Ethiopia, 171 sources of data, 167–169 users and uses of, 169–170 Health managers, 29, 167 HealthMap, 196 Health Metrics Network (HMN), vi, Health outcomes, 267–268 Health policymakers, 47 Health-related data, country production, 491 Health resource tracking, 209 Health sector, 106, 118, 206 types of indicators used in, 26–30 Health sector performance, 1, 66, 178 monitoring and evaluating, 78 Health sector strategic plans (HSSPs), 78 Health-seeking behaviour, 306 Health strategies, planning and implementing of, 266 Health systems, viii, xii, xvi–xviii, 4–12, 14, 17, 18, 30, 31, 34, 39, 66, 68, 70, 79, 86, 88, 91, 148, 152, 166–170, 174–178, 183, 184, 197, 198, 208, 209, 211, 215, 226, 229, 245, 246, 248, 249, 290–292, 368, 372, 406, 440, 454, 473, 475, 476, 478, 479, 487, 492, 497, 501, 503 levels of, performance, 166, 177 Health workers availability and distribution of, 229 production of, 229 Health workforce crisis, international agreement and, 226 Health workforce data, 231 Health workforce migration, mobility and, 237 Heat early warning systems, 266 Hepatitis A outbreak, 283 Heuveline, P., 254 Hierarchical models, 413 High-income countries (HICs), xiii, xv, 4, 5, 13–14, 18, 34, 209, 221, 226, 236, 477, 488 Hill, A., 77 Hippocrates, 285 Historical completed census questionnaires, 114 HIV/AIDS, 36, 55, 186, 472 programme, 169 prevalence surveys, 374 Spectrum model, 408 surveillance, 192–193 Homelessness, 292 Homelessness workflow, 294–295 Hong Kong, H5N1 Avian influenza in, 198 Hot spot analysis, 291 Household Budget Survey, 210 Household surveys, 11, 14, 325, 435 Index Human-centred design (HCD), 177 Humanitarian Data Exchange (HDX), 456 Human resource planners, 107 Human resources for health (HRH), 225–239 data analysis, presentation and interpretation, 235–236 health workforce crisis and international agreement, 226–228 health workforce migration and mobility, 237 human resources information systems (HRIS), 233–235 indicators and data sources, 228–233 observatories, 238 Human resources for health information systems (HRHIS), 11, 166, 233 Hupkens, C.L.H., 158 Hybrid models, 408 Hyder, A.A., 156 Hypertension, 354 I Iceland, 107, 469 iHRIS software, 174, 235 Impact evaluations, 74 Impact indicators, 73 Implementation science, 69 Impoverishment, 210 Inaccuracies, 435 Incidence case-control study, 351 Incidence rate, 27 Income and Expenditure Survey, 210 Incomplete population-based surveillance, 406 Incremental Cost-Effectiveness Ratio (ICER), 372, 373 denominator data, health outcomes, 374 519 interpreting, 375–377 numerator data, strategy costs, 373 In-depth interviews, 30, 58, 310 India, 26, 93, 108, 145, 177, 211, 312, 323, 327, 477 Indian National Family Health Survey, 148 Indian National Sample Survey, 145, 148 Indicator-based data, 189 Indicators, 25–40, 228–229 Commission on the Social Determinants of Health, 33 health, 30 of health risk behaviours, 91 of health service utilization, 91 of health status, 91 measure and use of, 34–38 to measure Universal Health Coverage (UHC), 32 of mortality, 249 Sustainable Development Goals (SDGs), 34 target, 36 used in health sector, types of, 26 Indirect conflict-related deaths, 249 Indirect demographic methods, 254 Indirect methods of estimation, 137 Individual patient record systems, 167–168 Individuals, legal and administrative benefits, 128–129 Indonesia, 303, 323 Infant mortality rate (IMR), 213, 249 Infants, registration of, 128 Infectious diseases, monitoring and surveillance of, 455 Infographics, 58, 442 Informant-based method, mortality data, 254 Information and communication technology (ICT), 132, 173–174, 490 Information exchange protocols, 175 520 Index Information integrity, 427–446 producing and assessing, 428–430 Information quality, criteria for assessing, 439–440 Information quality framework, 428 Information technology, 483 Infrastructure assets, 286 Innovations, 139 Input indicators, 73 Insecticide-treated bed nets (ITNs), 67, 77 INSEE Permanent Demographic Sample (EDP), 118 Institute for Health Metrics and Evaluation (IHME), xv, 52, 72, 130, 335, 404, 405, 417, 418, 496, 503 Institutional processes build, 95–98 inform, 93–95 Institutional review board, 156, 356, 471–473 Integrated Disease Surveillance and Response (IDSR), 197 Inter-American Statistical Institute (IASI), 108 International agencies, xiii, 32 International Association of Public Health Institutes, 97 International Classification of Diseases (ICD), 95, 130, 136, 493 ICD-10, 168, 176 International donors, 115 International Health Partnership (IHP+), 35, 79 International Health Regulations (IHR 2005), xiii, 186, 187, 198 International Labour Organization (ILO), 226–227 International Network for the Demographic Evaluation of Populations and Their Health (INDEPTH), 328, 333, 457 International Recruitment of Health Personnel, 237 International Sanitary Bureaus, 186 International Sanitary Conference, xiii International Sanitary Regulations (ISR), 186 International Standard Classification of Occupations (ISCO), 107, 239 International Statistical Congresses, 107, 110 International Statistical Institute (ISI), 108 International Union for the Scientific Study of Population (IUSSP), 112 Internet, 56, 195, 480 Internet-based technology, 195 Internet interview, 112 Interoperability, 175, 296, 297, 461–462 ethics, 474 Intervention monitoring and evaluating, 78–80 research, 68–70 study, 352 Investing in Health, xiv IPUMS programme, 114 Iraq, 246, 252, 257, 293 Iraq Family Health Survey (IFHS), 255 Ireland, Central Statistical Office, 113 Israel, 326 Italy, 108, 285 J Jakarta Declaration, 2007, 199 Jamaica, 236 Japan, 109, 136, 326 Japanese encephalitis, 189 Japec, L., 160, 445 Joint annual health sector reviews (JARs), 78 Jordan, 248 Index K Kaiser Family Foundation, 59 Keneba study, 328 Kenya, 19, 177, 208, 212, 213, 217, 221, 233, 251, 264, 273, 351, 367 community health workers, 168 Kenya Health Worker Information System (KHWIS), 233 Key informant interviews, 254 Kiaer, A., 147 approach, 147 representative method, 148 Knowledge-to-action gap, 56 KoBoToolbox, 458 Koch, R., vii Kosovo, 248 Kostkova, P., 464 Kutzin, J., 212 L Labour force surveys, 231 Labour or workforce economics, 368 Land-surface temperature (LST), 269 Langston, A.C., 159 Large-scale public health interventions, 407 Latin America, 108, 267 inequality, poverty and exclusion in, 118 Lawmakers, 48, 52 Leadership review, 95–96 Lebanon, 51, 248 Legal framework, 131, 139 Legionellosis, 187, 387 Legislation, for CRVS systems work, 131 Lengeler, C., 71 Lessig, L., 453 Liberia, 172, 183 HMIS capacity building in, 178 Libya, 246 521 Licence, 235, 453, 457, 459, 462 selection, 460 Life expectancy, 118, 366, 369 at birth, 249 Life table, 332–333 Likert scales, 311, 314 Linking Open Drug Data, 463 Liverpool School of Tropical Medicine, xiii Living Standard Measurement Survey, 210 Living Standards Measurement Study (LSMS), 150 Loa loa parasites, 391 Loess regression, 411 Logical framework, 73 Logic model, 73 for programme monitoring and evaluation, 74–75 Logistic management information system (LMIS), 166 London Health Observatory, 97 Longitudinal designs, 389 Longitudinal surveillance systems, 326 population registers, 326 Sample Registration Systems (SRS), 326, 327 verbal autopsy, 14, 72, 327, 335, 337, 350, 478, 490, 502 Los Angeles, 46 Lot quality assurance sampling (LQAS), 172 Low- and middle-income countries (LMICs), xv, xx, xxi, 3–6, 14, 15, 19, 69, 72, 115, 150, 151, 158, 168, 171, 209–211, 226–228, 321, 323, 325–327, 329, 335–337, 342, 350, 366, 378, 457, 477, 478, 487, 488, 490, 496, 500–503 Low-intensity follow-up interventions, 309 522 Index M Macfarlane, S., vi Machine learning, 272, 273 Machine readable data, 462 Mahalanobis, P.C., 145, 146, 148, 160 Malaria, 292 Malaria early warning systems (MEWS), 267 Malaria epidemics, 266 early warning of, 267 Malawi, 19, 253, 394, 406 Malaysia, 13 Mali, 13 Malnutrition, 268 Malthus, T.R., 322 Malthusian Trap, 322 Mandela, N., 105, 106 Marginalised and hard-to-reach groups, 309 Marginalised populations, 317 Marmot, M., 34 Marriage, legal proof of, 128 Masquelier, B., 251 Master health facility list (MHFL), 175 Maternal deaths, 25 Maternal mortality, 117 in Nigeria, 26 ratio, 213 Mateu, J., 388 Mathematical modelling, 272, 408–409 Mathers, C., 444 Matlab Demographic Surveillance Site, 323 Matlab demographic surveillance system, 328 Matrix-ranking, 311 Mauritius, 137 2011 census, 114 McCullagh, P., 397 Mean, 29 Measles mortality model, 408 MEASURE Evaluation, 166 MEASURE Evaluation PRISM tools, 177 Measurement and Accountability for Health, 6, 11, 18 Measurement bias, 354 Measurement errors, 434 Mechanistic models, 273, 390 Media, reports, 252 Median, 29 Medical insurance schemes, 490 Medical records, 11 Mekong Basin Disease Surveillance Network (MBDS), vi, 194 Memorandum on Transparency and Open Government, 453 Mental illness, 51 Meta-analyses, 71 Metadata, 31, 95, 113, 176, 441 Meteorological stations, 276 Méthode clinique, 311 Mexico, 46, 54, 108, 246, 307, 353 Meyer, B.D., 158 Micro-costing, 367, 373 Middle East respiratory syndrome coronavirus, 197 Millennium Declaration, 31 Millennium Development Goals, 107, 152, 336, 404, 420 Milliet, 147 Missing records, 436 Missing values, 15, 435 Mobile-based technology, 256 Mobile GIS tools, 294 Mobile Information Service, 308 Mobile phone technology, 398 Mobile survey tools, 297 Mobility, health workforce migration and, 237 Model complexity, 416, 420 Modelling, 37 Modern Dark Ages of Visualization, 285 Index Modern epidemiology, 342 Moldova, 51 Monitoring, 72, 169 Monitoring framework, 73 Morbidity and Mortality Weekly Report (MMWR), 190 Mortality, 254, 257 estimation of, 254–255 indicators of, 249 rates, 36 surveillance system, 251 thresholds, 255 Mortality data, 246, 253 collection of, 249–254 Informant-based method of, 254 MORTPAK, 112 Mozambique, 238, 367 Müller, W.G., 388 Multi-lateral donor, 67 Multi-lateral governmental development and financial agencies, 490 Multi-level modelling, 408 Multiple Indicator Cluster Survey (MICS), 150 Multiple systems estimation (MSE), 255 Multi-resistant staphylococcus aureus infection, 383, 384, 390 Multi-sectoral statistical systems, 12–13 Multi-stage cluster sampling, 252, 389 Muñoz, A.G., 267 Murray, C., 444 Myanmar, 288 N National Aeronautics and Space Agency (NASA), 268 National AIDS control programmes (NACPs), 493 National AIDS spending assessment (NASA), 209 523 National Alcohol Control Programme, 51 National census organisations, 334 National governments, 103, 488 National Health Accounts (NHA), 11–12, 205, 207–221, 491 comparisons and challenges of, 220–221 health-financing data, 208–210 for Kenya, policy utility of, 219–220 production process, 213–219 and System of Health Accounts (SHA), 211–213 Universal Health Coverage (UHC), 210–211 National Health Data Dictionary (NHDD), 176 National health examination survey (NHES), 17, 149, 151 challenges and opportunities of, 157–159 National health information systems, 1, 503 National health interview survey (NHIS), 148 challenges and opportunities of, 157 National Health Service (NHS), 5, 18, 166 National health surveys, 148, 151–152 National Health Workforce Accounts (NHWA), 205, 226, 228, 229, 231, 234, 239 National household surveys, 152–157 National public health surveillance, 187 National Sample Survey (NSS), 148 for demography and health, development of, 148–151 National stakeholder, 228 National statistical office (NSO), 1, 10, 12, 109, 111, 113, 119, 132, 157, 213, 489, 491 524 Index National statistical system, 1, 12, 491 centralised versus decentralised, 13 definition, 12 National surveillance activities, coordination of, 197 National surveillance system, 198 Navrongo Health Research Centre, 329 Nehru, Pandit J., 145 Neighbourhood methods, 254 Nepal, 248, 443 Netherlands, 326 New York City, 85, 90, 93, 94, 387 Neyman, J., 147, 148 National Health Accounts Production Tool (NHAPT), 213 Nicaragua, 353 Nigeria, 177, 387 maternal mortality in, 26 maternal mortality ratio in, 37, 38 Nipah virus, in Malaysia, 1999, 189 Non-communicable diseases (NCDs), viii, ix, 7–9, 17, 34, 45, 46, 89, 92, 129, 149, 151, 152, 157, 184, 248, 264, 342, 364, 440, 488, 495, 497 Non-core topics, 110 Non-governmental organisations (NGOs), 51, 489 Non-probability sampling, 147 Non-representative population bias, 406 Non-response, 158, 433 Non-response error, 433–434 Non-sampling biases, 253 Normal distribution, 147 Northern Ireland, 119 Norway, 46, 326 Notifiable diseases, 187 O Obama, B., 453 Oliver, K, 57, 58 Oman, 435 Onchocerciasis, 392 One Health approach, 198 Ontologies, 463 Open Concept Lab (OCL), 176 Open data, 452 challenges to implementing, 464–465 Open Data Kit, 458 Open data movement, 95, 452–454 in health sector, 454–457 Open Data Portal, 95 Open Data Progression Model, 425, 452, 457–464 data collection, 458 data community, 460–461 data documentation, 458–459 data open, 459–460 interoperability, 461–462 linked data, 463–464 Open data standards, 453 Open formats, 462 Open government, 95 data principles, 453 Open health data, 463 Open Health Information Exchange (OHIE), 175 Open Knowledge Foundation, 451 Open results-based financing, 454 Open science movement, 452 Open Space Technology workshops, 316 OpenStreetMap, 456 Opinion-based policy, 48 Opioid epidemic, 25, 38, 52, 293 Opportunistic sampling, 389 Opportunity cost, 370 Oral contraceptives (OCs), 53 O’Reilly, T., 453 Organisation for Economic Co-operation and Development (OECD), 211, 441, 445, 452 Outcome evaluation, 74 Index Outcome harvesting, 75 Outcome indicators, 73 Outlier analysis, 291 Outliers, 315 Out-of-pocket expenditures, 33 Out-of-sample predictive validation, 414 Output indicators, 73 P Paciorek, C.J., 413 Pakistan, 12, 387 Pan America Health Organization (PAHO), 209, 451 Pan-American Sanitary Bureau, xiii Pandemic influenza H1N1, 184 Pandemic Influenza Preparedness Framework (PIP), 199 Pappas, G., 156 Partial information, 147 Participant observation, 311 Participatory Onehealth Disease Detection (PODD), 197 Participatory poverty assessments (PPA), xiv Participatory rural appraisal (PRA), xiv, 306, 311, 312 Partnership in Statistics for Development in the 21st Century (PARIS21), 6, 491, 500 Passive surveillance, 188, 249 Pasteur, L., vii Past household approach, 252 Path determination, 291 Patient registries, 168 Percentile maps, 397 Permanence, 128 Peru, 118 Pezzulo, C., 256 Phenomenology, 310 Philippines, 211 Phillips, D.E., 329 Pholela Health Centre, 328 525 PICO technique, 68, 71 Placebo, 352 Plague, 186 Plausibility approach, 77 Plausibility assessments, 76–77 Plausibility designs, 77 Pocock, S.J., 352 Policy advocacy and action, 497, 498 Policy and programme management epidemiologists, 343 epidemiology for, 341–358 Policy formulation and adoption, 52–53 with strong advocacy, 53 Policy implementation, evaluation and, 53–55 Policymakers, 48, 66, 221 statistical and administrative benefits for, 129 Policymaking data and evidence in, 47–48 different stages of data in, 49–55 increase demand for use data and evidence in, 55–58 participants in, 48–49 Policymaking stages, 49–55 agenda setting, 52 policy adoption, 53 policy evaluation, 54 policy formulation, 52 policy implementation, 53 problem recognition, 51–52 Policy questions, 57 Policy watchdogs, 49 Polio, 187, 194–195 eradication, 293 Political arithmetic, 147 Political commitment, 138 Political economy approach, 56 Poor air quality, 85 Poor Risk Perception, 307 Population attributable fractions (PAFs), 92 526 Index Population census, 105–120, 231, 253, 325 census office, 109–110 challenges in, 115–117 combining and analysing health and health-related data, 117–119 data and objectives of, 110 history of, 107–109 output of, 113–114 phases of, 111–113 presentations of census data in, 114–116 uses of census data in, 106–107 Population Commission, 108 Population data, 107 Population dynamics, 321 Population projections, 333 Population pyramid, 114, 115, 331 by single year of age for 2011 census, 114 Population registers, 326 Population science, 322–324 Population, sex ratio, 115, 116 Post-enumeration survey (PES), 439 Practices to improve data use, 90–98 build, 90 inform, 90 measure, 90 Predictive modelling, 414 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement, 71 Preliminary report, 113 Preparatory phase, 111 Prevalence case-control study, 351 Prevalence mapping, 391–393 Prevalence rate, 27 Prevention of mother-to-child transmission of HIV (PMTCT), 77 Principles and Recommendations for Population and Housing Censuses, 108 PRISM tools, 178 Private sector, 14 Probability assessments, 76 Probability sampling, 147, 153, 388 Probability theory, 147 Process indicator, 73 Professional association databases, training institution and, 233 Professional organizations, 51 Programme for Monitoring Emerging Diseases (ProMed-mail), 196 Programme management, indicators of, 35–36 Programme managers, 35, 49, 72 Programme monitoring, 74 The Progressa/Opportunidades/ Prospera Initiative, 54 Prospective mortality surveillance, 249–252 PROSPERO, 72 Protocol analysis, 311 Protocols/Standard operating procedures (SOP), 430–432, 434–436 Proxy indicator, 33, 39 Public and philanthropic donors, 490 Public engagement, participation and, 138 Public expenditure reviews (PER), 209 Public expenditure tracking surveys (PETS), 209 Public health, 265 agencies, 91–94 consequences, 247–248 data, open and transparent, 476 field epidemiologists, 343 observatories, 96–97 practice, 472–473 systems, 248 triangulation, 444 Public Health Emergencies of International Concern (PHEIC), 184, 492 Index Public health surveillance, 183–200 challenges and future of, 197–199 data sharing, 199 global, 194–195 global surveillance, 186–187 national, 187–193 overview of, 184–185 review of systems, 193 role of information and communication technology in, 195–197 systems, 11, 104 Public-private partnership and funds, 490 Pulkki-Brännström, A.-M., 70 Purposive sampling, 147, 312 Q QALY (Quality-Adjusted Life Year), 368, 373 Qualitative approach, 309 challenges and opportunities, 316 Qualitative data assertions, 313 classifying and analysing, 312–315 facts, 312 narratives, 314 opinions, 313–314 for policymaking, 303–317 Qualitative information, 30 Qualitative inquiry, 304, 317 evolution of, 305–307 explanation, 308 exploration, 307 functions of, 307–309 triangulation, 308 Qualitative research, judging findings of, 315–316 Quality data collection, 465 Quantile maps, 397 527 Quantitative indicators, 30, 317 Quantophrenia, 31 Quasi-experimental designs, 69, 353 Quebec (New France), 107 Quételet, A., 107 R Rabies mortality model, 408 Ramis, R., 393 Random sample, 147, 349 Randomized controlled trial (RCT), 68, 69, 352, 356 blinding, 352 Randomized stepped wedge, 76 Rapid rural appraisal, 306 Ratio, 29 Raw health data, 27, 405 Real-time mortality statistics, 129 Real-time spatio-temporal surveillance, 387 Real-time surveillance system, 393–396 to predict dengue in Brazil, 270–271 Reanalysis data, 270 Recall bias, 253 Recursive abstraction, 314 Redundancy error, 433–434 Redundant records, 436 Referral-based sampling, 254 Reflexivity, 315 Regional East African Community Health (REACH), 59 Regional Refugee and Resilience Plan (3RP), 248 Register-based census, 119 Registers of services, 11 Registration records, 128 Regression modelling, 390–391 Regression techniques, 409 Relative risk (RR), 349 Remote sensing techniques, 258 Repeated cross-sectional design, 390 Replicability, 416, 417 528 Index Reportable diseases, 187 Representative method, 147 Republic of Serbia, 207 Research Fairness Index, 477 Resources, 139 Results-based financing (RBF), 454 Results chain, 73, 79 for programme monitoring and evaluation, 74 Results-chain framework, 35, 73, 79 for programme monitoring and evaluation, 74 Results framework, 73 REtrieval of DATa for small Areas by Microcomputer (REDATAM), 112 Retrospective survey, 252 Reverse gradients, 34 Roberts, B., 253, 256 Roberts, L., 257 Rockefeller Foundation, xiii Roll Back Malaria, 77 Rolling census, 119 R open-source statistical computing environment, 272, 396 Routine Health Information Network (RHINO), Routine health information systems (RHIS), 5, 276 Rural rapid appraisal (RRA), xiv Rutherford, G.W., 444 Rwanda, 78 Health Sector Strategic Plans (HSSPs), 78 Plausibility assessment of malaria programme, 77 RxNorm, 463 S Saith, A., 39 Sakshaug, J.W., 158, 159 Salt reduction, 66 Sample registration systems (SRS), 326, 327 Sample size, 154 Sample surveys, 146–148 Sampling, 252 Sampling error, 37, 433 Sampling method, 147, 155 SANHANES, 153, 154, 158 Sanson-Fisher, R.W., 353 Satellite imagery, 257 Satellite rainfall, temperature and, 269, 270 Saudi Arabia, 435 Schmidt, M., 456 Schoeni, R.F., 158 Schwarzenegger, A., 288 Scotland, 27, 29, 113, 119 SDG indicators, 4, 92, 258, 494 Sea surface temperatures (SSTs), 267 Second World War, xiii Security threats, 248 Selection bias, 246, 354 Selection error, 433 Self-completion of mailed questionnaires, 112 Self-report biases, 406 Senegal, 328 Sequential sampling, 357 Serotype-2 oral poliovirus vaccine (OPV2), 387 Service coverage, 32 Severe acute respiratory syndrome (SARS), 184, 185 Sex ratio, 115 Shaddick, G., 393 Shidaye, 69 Sierra Leone, 183, 455, 456, 473 Silva, R., 251, 255 Simple random sampling, 252, 388 Skool Foundation, 197 Smallpox, 186 Snake bite mapping, 391 Snow, J., vii, 342 Index Snowball sampling, 312 Social determinants of health, 284, 293, 489 Social epidemiology, 342 Social factors, 306 Social gradients, 34 Social health insurance (SHI), 220 Social media, 56 Social network analysis, 314 Socio-demographic data, 148, 391 Software as a service (SaaS) model, 297 Somalia, 246 South Africa, 95, 137, 328, 350, 363, 365, 439, 440 statistics of, 105 South Africa National Health and Nutrition Examination Survey, 154 Spatial analysis, 289 Spatial and spatio-temporal models data types, 387, 388 prevalence mapping, 391–393 real-time surveillance, 393–396 sampling, 388–390 types of, 390–396 Spatial autocorrelation, 289 Spatial bias, 388 Spatial point pattern dataset, 387 Spatial variation, 389 Spatio-temporal analysis, 385–387 Spatio-temporal intensity, 385 Spatio-temporal mapping, 393 Spatio-temporal models, 272 Spectrum/EPP, 324, 333 Spectrum software, 494 Spider chart, 375 Spiegelhalter, D., 443 SPSS, 272 Sri Lanka, 248, 386, 435 Sea surface temperatures (SST) indices, 270 Stakeholder communication, 295 Standard operating procedures (SOP), 430 529 Standardised monitoring and assessment of relief and transitions (SMART), 252 STATA, 272 Statistical Data and Metadata Exchange (SDMX), 504 Statistical inference, 147 Statistical methods, communicating estimates, 417 Statistical modelling, 272, 404, 407, 409–414 complex predictive models, 413 covariates, use of, 409–410 frequentist versus Bayesian estimation methods, 410, 411 model frameworks, appropriateness, 414 multi-level modelling, relatively sparse data, 413 smooth estimates, multiple observations, 411–412 validation methods, 414 Statistical power, 289 Statistically significant, 355 Statistical significance, 291 Statisticians, 147, 385 STEPwise approach to surveillance (STEPS), 151 Stratified random sample, 357, 389 Sub-accounts, NHA, 217 Sub-national estimation, 159 Sugar consumption, 46 Surveillance data guides programmes, 473 Surveillance of biological agents, 194 Surveys, 252–254 Survival bias, 253 Sustainable Development Goals (SDGs), 2, 3, 26, 32, 34, 58–59, 65, 66, 107, 140, 152, 226, 246, 277, 303, 317, 336, 342, 364, 404, 420, 491 Sweden, 108, 136, 326 530 Index Swiss National Cohort study (SNC), 119 Switzerland, 119 Synoptic observations, 269 Syria, 246, 293 Syrian refugees, 248 System of Health Accounts (SHA), 211 National Health Accounts (NHA) and, 211 Systematic random sampling, 252, 357 Systematic reviews, 52, 70, 71 of insecticide-treated bed nets and curtains for preventing malaria, 71 Systemized Nomenclature for Medicine (SNOMED-CT), 176 Tomlinson, R.F., 286 Toole, M.J., 245 Total error framework, 429 Total health expenditure (THE), 215 Total survey error (TSE), 155 Total survey quality, 155–156 Tracer indicators, 173 Training Programs in Epidemiology and Public Health Interventions Network (TEPHINET), 198 Transparency, 97, 416, 417 Triangulation, 77, 189, 251, 304 Trust Fund for Statistical Capacity Building (TFSCB), 500 Tukey, J.W., 286 Turkey, 248 Turner, W., 305 Twine data systems, Yemen, 251 T Tabulation phase of census, 112 Tanzania, 19, 29, 177, 178, 253, 327 Target population, 431–434 capturing selected units, 433, 434 frame of units in, 432 observing accessed units, 433–434 selecting units from frame, 433 Technology, 158 Teen birth rates, 288 Telephone interview, 112 Temperature time-series, 271 Temporal variation, 389 Terminology management service, 176 Thai International Health Policy Program, 17 Thailand, 13, 16, 109, 253, 435 Thomson, D.R., 154 Thomson, M.C., 267 THSCB, 500 Tidy data, 462 Timeliness of data, 173, 193 Timor-Leste, 255 Tobacco control, 90 Tobler, W., 289 U Uganda, 177, 234, 303, 308 HRIS development in, 235 quality assessment of facility data, 172 UHC 2017 Global Monitoring Report, 81 UHC coverage index, 33 UHC tracer indicators, 67 UK Census, 117 UK National Health Service (NHS), 166, 394 UK Office for National Statistics, 125 Ulisubisya, M., 19 UN Agencies, 492–494 UNAIDS, 496 Uncertainty estimation, 415–416 versus sensitivity analysis, 416 UN Children’s Fund (UNICEF), xiii, 14, 130, 150, 444, 496 Multiple Indicator Cluster Survey (MICS), 14 Index Under-five mortality rate (U5MR), 249, 329, 411, 412 UN Economic Commission for Africa, 109 UN Economic Commission for Europe (UNECE) Task Force, 120 Unethical practices, 470 UNHCR ProGres, Yemen of, 251 UN High Commissioner for Refugees (UNHCR), 248, 251 UN High Commission on Refugees, 140 Uniform resource identifiers (URIs), 463 UN Inter-agency and Expert Group on SDG Indicators, 35 UN Inter-agency Group on Mortality Estimation (UN-IGME), 411 United Kingdom (UK), 13, 18, 114, 120, 305, 309, 332, 394, 455 United Nations (UN), xi, 65, 126, 245 United Nations General Assembly, 227 United Nations Population Fund (UNFPA), 109 United Nations Sub-commission on Statistical Sampling, 145 United States (US), 13, 17, 108, 111, 114, 136, 190, 283, 287, 332 United States Agency for International Development (USAID), 150, 209 United States Centers for Disease Control and Prevention, 25 Universal Declaration of Human Rights, 471 Universal Health Coverage (UHC), 4, 32–33, 65, 66, 79, 152, 208, 210, 226, 487 Universality, 128 UN Population Division, 112, 332, 334 UN population estimates, 110 UN Relief and Works Agency for Palestine Refugees in the Near East (UNRWA), 248 531 UN Statistical Commission (UNSC), 13, 108 UN Statistics Division (UNSD), 32, 108, 130, 334 Uppsala University, 255 US 1935/36 National Health Survey, see National health surveys US Behavioural Risk Factor Surveillance Survey (BRFSS), 287 US Bureau of the Census, 112 US Centers for Disease Control and Prevention (CDC), 17 Use of information, 178 US Epidemic Intelligence Services (EIS), 198 US National Center for Health Statistics (NCHS), 17 US National Health and Nutrition Examination Survey (NHANES), 17 US President’s Emergency Plan for AIDS Relief (PEPFAR), xv, US Veterans Health Administration, 225, 226 Utilitarianism, 481 V Validity, 434 Validity of data, 193 Van den Broeck, J., 437 Vardigan, M., 464 Variables, 108 Venice, 186 Verbal autopsy, 326, 327 Visualization techniques, 139, 175, 442 Vital statistics production of, 132–133 production, sharing and dissemination of, 139 system, 126 Vital statistics performance index (VSPI), 138 532 Index Voices of the Poor, in 1999, xiv Voluntary medical male circumcision (VMMC), 363–365 Vulnerable populations, xv, xix, 10, 93, 140, 264, 268, 471, 475 W Wagener, D.K., 156 Waldman, R.J., 245 Wales, 119 Wealth ranking, 311 Weather, climate data and, 268 Weather stations, 271 Wellcome Trust, x West African Ebola, 200 West Bank, 248 WhatsApp, 256 WHO 100 Global Reference List of Core Health Indicators, 79, 91 WHO Handbook for guideline development, 70 WHO Health Equity Assessment Toolkit, 93 WHO report on the global tobacco epidemic, 91 WHO STEPwise approach, 495 Workload indicators of staffing needs (WISN), 235 World Bank (WB), xiii, 6, 25, 26, 150, 209 Living Standards Measurement Surveys, 33 World Fertility Survey (WFS), xiv, 150 World Health Assembly, 227, 265, 443 World Health Indicators, 30, 31 World Health Organization (WHO), xiii, 3, 4, 14, 16–18, 25, 45, 51, 56, 70, 77, 79, 91, 92, 107, 131, 137, 138, 151, 169, 172, 186, 187, 190, 194, 196, 197, 199, 209, 220, 227, 229, 237, 265, 267, 306, 332–334, 341, 342, 364, 368, 375, 384, 403, 407, 408, 410, 415, 417, 418, 444, 462, 475, 479, 492–494, 496, 497 Eastern Mediterranean Regional Office, 152 European Office, 86–87 Global Health Observatory, 32 health systems performance framework, 2000, World Health Report, 2006, 226, 228, 238, 502 World Health Statistics (2017), 13, 497 World Health Survey, 151, 210 World Life Expectancy website, 115 World Meteorological Organization (WMO), 265 World Population Data Sheet, 335 World Summit for Children, 31, 150 World Wide Web (WWW), 12, 195, 196, 463 World Wide Web Foundation, 457 WorldPop project, 336 Wyber, R., 464 Y Yamey, G., 56 Years of Life Lost (YLL), 29, 369 Yellow fever, 186 Yemen, 245, 246 YLD, morbidity component, 369 Yugoslavia, 255 Z Zika virus (ZIKV), 184, 190, 292, 342, 343, 351, 356, 385 prevention and control of, 267–268 Zuckerberg, M., 465 .. .The Palgrave Handbook of Global Health Data Methods for Policy and Practice Sarah B Macfarlane • Carla AbouZahr Editors The Palgrave Handbook of Global Health Data Methods for Policy and Practice. .. the wisdom of more than 50 global experts to write and prepare the Palgrave Handbook of Global Health Data Methods for Policy and Practice This handbook provides the best answer to the question... Poverty and Human Development Initiative Oxford, UK vercoming the Data Poverty Divide: Time O for Structural Adjustment The Palgrave Handbook of Global Health Data Methods for Policy and Practice