Verbal Autopsy in Health Policy and Systems : A Literature Review

The research presented in this paper is funded by the Health Systems Research Initiative from the Department for International Development (DFID)/ Medical Research Council (MRC)/Wellcome Trust/Economic and Social Research Council (ESRC) (MR/P014844/1).Peer reviewedPublisher PD

eRegistries: Electronic registries for maternal and child health

Background: The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women’s, Children’s and Adolescent’s Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. Methods: In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middleincome countries, and a systematic search of literature from 2005–2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. Results: eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paperbased data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health information. More mature country capacity reflected by published health registry based research is emerging in settings reaching regional or national scale, increasingly with electronic solutions. 66 scientific publications were identified based on 32 registry systems in 23 countries over a period of 10 years; this reflects a challenging experience and capacity gap for delivering sustainable high quality registries. Conclusions: Registries are being developed and used in many high burden countries, but their potential benefits are far from realized as few countries have fully transitioned from paper-based health information to integrated electronic backbone systems. Free tools and frameworks exist to facilitate progress in health information for women and children

4 million neonatal deaths: an analysis of available cause-of-death data and systematic country estimates with a focus on “birth asphyxia”

BACKGROUND: Of the world’s four million neonatal deaths, 99% occur in low/middleincome countries, but most information relates to the 1% dying in high-income countries. Reliable cause-of-death data are lacking. The aim of this thesis is to develop programmatically-relevant, national estimates for neonatal cause-of-death, focusing on “birth asphyxia” to illustrate specific challenges in the available data and for systematic national estimates. OBJECTIVES: 1. Review estimation methods, giving implications for neonatal cause-of-death estimation. 2. Propose programmatic categories for neonatal cause-of-death, reviewing measurement options for intrapartum-related outcomes (“birth asphyxia”). 3. Identify and analyse existing neonatal cause-of-death data. 4. Estimate intrapartum-related neonatal deaths for all countries, comparing single-cause and multi-cause models. 5. Summarise priorities for improving neonatal cause-of-death estimates and input data. DATA INPUTS: Case definitions were reviewed for neonatal cause-of-death and intrapartumrelated outcomes. Six programmatically relevant cause-of-death categories were defined, plus a residual “other neonatal” category. Two sources of neonatal cause-of-death data were examined: Vital Registration (VR) datasets for countries with high coverage (>90%) based on a new analysis from 83 countries; and published/unpublished studies identified through systematic searches. Inclusion criteria for representativeness and comparability were applied. Data from 44 countries with VR (96,797 neonatal deaths) and from 56 studies (29 countries, 13,685 neonatal deaths) met inclusion criteria, despite screening almost 7,000 abstracts. These data represent <3% of the world’s neonatal deaths. Thus estimation is necessary for global level information. No useable data were identified from Central and North-West Africa, or Central Asia. MODELLING: Methods were developed to estimate intrapartum-related neonatal deaths (single-cause), and then simultaneously estimate seven causes of neonatal death (multi-cause). Applying these proportions to the numbers of neonatal deaths in 192 countries gives a global estimate of intrapartum-related neonatal deaths of 0.90 (0.65-1.17) million using single-cause and 0.91 (0.60-1.08) million using multi-cause methods. DISCUSSION: The multi-cause model has become WHO’s standard method for neonatal cause-of-death estimates. However, complex statistical models are not a panacea. More representative data are required. Simplified case definitions and consistent hierarchical cause-of- death attribution would improve comparability, especially for intrapartum-related deaths

Build the cradle later: An examination of perinatal care and mortality in village nepal.

Background: As perinatal and neonatal mortality move to the foreground of the debate on how best to improve child survival in poor countries, there appears a pressing need to test potential interventions. Implicit in testing is the ability to document birth and neonatal outcomes in rural communities. The thesis sets perinatal events in the context of the child survival literature and critically examines current knowledge about practices, outcomes and interventions. This knowledge is found to be limited, particularly in terms of practices and outcomes in rural settings in developing countries. Methods: Two methods are described to document perinatal events in villages in Makwanpur district, Nepal. (1) a census of women of reproductive age, collecting information about previous pregnancies and most recent live births (2) a prospective system of registration that tracked women through childbirth and infants through the neonatal period. Both methods yielded information on pregnancies, birth outcomes, care practices and health care seeking patterns. Results: The census collected information from 12,170 women, of whom 4867 had given birth in the preceding two years. The prospective surveillance collected information on 3522 pregnancies over two years. The thesis presents results under two broad themes: (1) a description of the birth experience of women in rural Makwanpur, its outcomes, practices and care seeking patterns (2) a comparison of the two methods of data collection. Poverty was the norm in rural Makwanpur and only a quarter of participants were literate. 30% of pregnant women had any antenatal care, which tended to be both late and limited, and 95% gave birth at home. Three percent of women were helped by trained health workers and there were compromises in hygiene and warmth at the time of delivery. Breastfeeding rates were high. The prospective registration process suggested a neonatal mortality rate of 37 per thousand live births, a figure higher than that from the census (27 per thousand), and thus higher than would be estimated by existing methodologies. Discussion: Antenatal, delivery, postnatal and neonatal care practices and care seeking are compared with existing knowledge from other studies. Their implications for programmatic intervention are considered. The issue of recall-based data collection is discussed as it bears upon the evaluation of public health interventions. The feasibility of registration systems is assessed and recommendations made for increasing reliability, expansion and replication, and reducing system costs. 386 words

Identification of maternal deaths, cause of death and contributing factors in Mangochi District, Malawi: a RAMOS study

Introduction: The recent World Health Organization (WHO) report on trends in Maternal mortality (MM), from 1990 to 2013, ranks Malawi as one of the fifteen sub-Saharan countries with the highest Maternal Mortality Ratio (MM) of above 500 per 100,000live births (WHO 2014b). Malawi has no registration system for recording births and deaths. MM estimates are based on direct sisterhood methods, (used in Demographic and Health Surveys) and WHO modelled estimates, which are both highly susceptible to inaccuracies because they are both indirect methods which do not identify individual deaths within a defined population. The difficulties in obtaining accurate MMR estimates highlight the need to explore other methodologies that give more reliable data on levels as well as the cause of maternal deaths (MDs). A Reproductive Age Mortality Survey (RAMOS) is one such approach and can provide more direct and complete estimation of MMR in countries without reliable vital registration or other data sources. This is the first RAMOS used in Malawi. The aim of this study was to identify the magnitude, causes of, and factors associated with MDs in the Mangochi district in Malawi. Methods: Deaths of women of reproductive age (WRA), (15 to 49 years) that occurred from December, 2011 to November, 2012 in the district were identified. Multiple data sources were used to identify deaths, including; health facilities, communities, mortuary records and police records. Classification the death as a MD or not was done according to the ICD-10 definition. Facility based audit were conducted for all facility based MDs and verbal autopsies for all MDs. Cause of death attribution was done in three ways, 1) by a panel of experts in maternal health using the WHO application of ICD-10 to deaths during pregnancy, childbirth and puerperium (ICD-MM) (WHO 2012c), 2) by health professionals working in health facilities and 3) by using an InterVA-4 computer model. Cause of death attributed by the three methods was then compared. The three delays model was used to identify delays associated with MDs. The number of MDs identified in this study was compared to the official register in the district. MMR was calculated based on three proxy denominators; 1) number of babies who received BCG vaccine, 2) live births from the census report and 3) live births calculated from general fertility estimates. Results: A total of 424 deaths of WRA were identified and 151 of these (35.6%) were identified to be MDs. Based on the three denominators, the MMR for the Mangochi district was within the range of 341-363 per 100,000 live births (95% CI: 289-425 per 100,000 live births). Only 86 MDs had been reported via existing registers, giving an underreporting rate of 43%. The highest MMR was in age group 25-29 years (494/100,000 live births (95% CI: 349-683 per 100,000). Most MDs (62.3% (94/151)) occurred in health facilities. Based on ICD-MM cause classification, 74.8% were direct MDs, 17.3% were indirect and 7.9% were due to unknown causes. The leading cause of direct MDs (n=113) was obstetric haemorrhage (35.8%) followed by pregnancy related infections (14.4%) and hypertensive disorders (12.6%). The most frequent indirect cause of MD (n=26) was malaria (56.7%). There was low level of agreement over the cause of death between the panel of experts and health the professionals (κ= 0.37), while a substantial level of agreement was observed between the panel of experts and the InterVA-4 model (κ= 0.66). Based on ICD-MM, health professionals identified contributory factors (morbidity group) to 15.1% of MDs (n=86) as the underlying cause of death. Substandard care for obstetric emergencies, lack of blood, lack of transport, failures to recognize the severity of a problem at community level and delays in starting the decision-making process to seek health care were frequently factors associated with MDs. Conclusion: The current MD reporting system in Malawi needs strengthening. The high numbers of health facility deaths, cause of MDs and their contributing factors in Mangochi reflect serious deficiencies in the quality of maternal care that need to be urgently rectified. Urgent orientation of health workers on ICD-MM is required to obtain accurate information on cause of MDs that can be used to design effective interventions. There is need to strengthen the referral system and educate women on obstetric danger signs

Counting the smallest: data to estimate global stillbirth, preterm birth and low birthweight rates

Background: Stillbirth, preterm birth and low birthweight are important indicators of global burden of disease, status of maternal health and healthcare, and predictors of health throughout the life-course. Data are available through Civil Registration and Vital Statistics (CRVS), Health Management Information Systems (HMIS) and household surveys. Comparisons of data by country or over time requires standard definitions and comparable data quality. Data gaps and inconsistencies necessitate adjustments and use of modelled estimates in many settings. Methods: Systematic data searches were undertaken to compile available data on these outcomes for 195 countries. Where no reliable data were available, statistical models were used to generate national estimates. Data quantity and quality were summarised for each outcome, with implications for improvement and research. Results: The estimated burden remains large: 2.6 million stillbirths (2015), 14.9 million preterm births (2010) and 20.5 million low birthweight babies (2015) based on 4,392 data-points from 148 countries. Common data quality challenges include use of non-standard definitions, omission, and misclassification. Targeted data quality assessments are required to detect these. Five data gaps identified to address are: (1) coverage of data systems (2) accurate assessment of vital status at birth, birthweight and gestational age for every birth, (3) accurate recording of these key data elements (4) comparable collation within and across data systems and (5) use of data to inform programmes and policy. Evidence exists across all data platforms of examples of solutions to close these gaps. Systematic data linkage could increase efficiency. Conclusion: Data availability has increased over the last decade, even in the poorest countries. Data quality issues currently hamper the use of these data to improve outcomes in many settings, but could be addressed with political will and targeted investment. Ending preventable deaths among the world’s smallest babies requires that these data are accurate, available and used

Development and assessment of systems for population-based estimation of neonatal and perinatal mortality in The Gambia

Background: Accurate data on perinatal and neonatal mortality in sub-Saharan Africa are scarce. This thesis assesses methods for their estimation in The Gambia. Methods: Under-five mortality was estimated, comparing the results of the first Demographic Health Survey in 2013 with previous inquiries. Three studies collecting primary data were conducted to assess and develop systems to improve estimation of perinatal and neonatal mortality. First, a pregnancy history survey that employed female interviewers was conducted and the results were compared with those from routine health and demographic surveillance in Basse. A second study linked records of women visiting antenatal clinics (ANC) to the Health and Demographic Surveillance System (HDSS) and used the augmented data to re-estimate neonatal, infant mortality and stillbirth rates. Third, a qualitative study was embedded in the retrospective survey to explore reasons for under-reporting of neonatal deaths and stillbirths. Findings: The DHS estimates of mortality for the recent past were consistent with those from other surveys. Age-disaggregated estimates for 2010-11 reveal that neonatal mortality constitutes 40% of under-five deaths in The Gambia. Women reported significantly more pregnancies in the pregnancy history survey than the HDSS and, in particular, more adverse pregnancy outcomes. Thus, while collecting data prospectively in HDSS generally limits omissions of deaths and age/date reporting errors, it may yield less complete data than pregnancy histories on adverse perinatal outcomes. However, the ANC-HDSS linkage study improved the capture of pregnancies. Women whose pregnancy was only detected in the clinic were 2.5 times more likely to have had a stillbirth than women whose pregnancies were picked up by the HDSS. The qualitative study showed that the cultural practice of pregnancy concealment, reluctance to speak of the deceased and to be counted affect the accuracy of data on pregnancy outcomes and mortality in The Gambia. It also revealed the importance of identification and use of culturally-appropriate metaphors and idioms to discuss sensitive matters compared to training interviewers to ask standardised verbatim questions

PLoS Med

BackgroundCivil registration and vital statistics (CRVS) systems play a key role in upholding human rights and generating data for health and good governance. They also can help monitor progress in achieving the United Nations Sustainable Development Goals. Although many countries have made substantial progress in strengthening their CRVS systems, most low- and middle-income countries still have underdeveloped systems. The objective of this systematic review is to identify national policies that can help countries strengthen their systems.Methods and findingsThe ABI/INFORM, Embase, JSTOR, PubMed, and WHO Index Medicus databases were systematically searched for policies to improve birth and/or death registration on 24 January 2017. Global stakeholders were also contacted for relevant grey literature. For the purposes of this review, policies were categorised as supply, demand, incentive, penalty, or combination (i.e., at least two of the preceding policy approaches). Quantitative results on changes in vital event registration rates were presented for individual comparative articles. Qualitative systematic review methodology, including meta-ethnography, was used for qualitative syntheses on operational considerations encompassing acceptability to recipients and staff, human resource requirements, information technology or infrastructure requirements, costs to the health system, unintended effects, facilitators, and barriers. This study is registered with PROSPERO, number CRD42018085768. Thirty-five articles documenting experience in implementing policies to improve birth and/or death registration were identified. Although 25 countries representing all global regions (Africa, the Americas, Southeast Asia, the Western Pacific, Europe, and the Eastern Mediterranean) were reflected, there were limited countries from the Eastern Mediterranean and Europe regions. Twenty-four articles reported policy effects on birth and/or death registration. Twenty-one of the 24 articles found that the change in registration rate after the policy was positive, with two supply and one penalty articles being the exceptions. The qualitative syntheses identified 15 operational considerations across all policy categories. Human and financial resource requirements were not quantified. The primary limitation of this systematic review was the threat of publication bias wherein many countries may not have documented their experience; this threat is most concerning for policies that had neutral or negative effects.ConclusionsOur systematic review suggests that combination policy approaches, consisting of at least a supply and demand component, were consistently associated with improved registration rates in different geographical contexts. Operational considerations should be interpreted based on health system, governance, and sociocultural context. More evaluations and research are needed from the Eastern Mediterranean and Europe regions. Further research and evaluation are also needed to estimate the human and financial resource requirements required for different policies.Why was this study done?What did the researchers do and find?What do these findings mean?001/WHO_/World Health Organization/InternationalPEPFAR/PEPFAR/United States31560684PMC6764661802

Hidden Death and Social Suffering: A Critical Investigation of Suicide, Death Surveillance, and Implications for Addressing a Complex Health Burden in Nepal

abstract: Suicide is one of the fastest-growing and least-understood causes of death, particularly in low and middle income countries (LMIC). In low-income settings, where the technical capacity for death surveillance is limited, suicides may constitute a significant portion of early deaths, but disappear as they are filtered through reporting systems shaped by social, cultural, and political institutions. These deaths become unknown and unaddressed. This dissertation illuminates how suicide is perceived, contested, experienced, and interpreted in institutions ranging from the local (i.e., family, community) to the professional (i.e., medical, law enforcement) in Nepal, a country purported to have one of the highest suicide rates in the world. Drawing on a critical medical anthropology approach, I bridge public health and anthropological perspectives to better situate the problem of suicide within a greater social-political context. I argue that these complex, contestable deaths, become falsely homogenized, or lost. During 18 months of fieldwork in Nepal, qualitative, data tracing, and psychological autopsy methodologies were conducted. Findings are shared through three lenses: (1) health policy and world systems; (2) epidemiology and (3) socio-cultural. The first investigates how actors representing familial, legal, and medical institutions perceive, contest, and negotiate suicide documentation, ultimately failing to accurately capture a leading cause of death. Using epidemiologic perspectives, surveillance data from medical and legal agencies are analyzed and pragmatic approaches to better detect and prevent suicidal death in the Nepali context are recommended. The third lens provides perceived explanatory models for suicide. These narratives offer important insights into the material, social, and cultural factors that shape suicidal acts in Nepal. Findings are triangulated to inform policy, prevention, and intervention approaches to reduce suicidal behavior and improve health system capabilities to monitor violent deaths. These approaches go beyond typical psychological investigations of suicide by situating self-inflicted death within broader familial, social, and political contexts. Findings contribute to cultural anthropological theories related to suicide and knowledge production, while informing public health solutions. Looking from the margins towards centers of power, this dissertation explicates how varying institutional numbers can obfuscate and invalidate suffering experienced at local levels.Dissertation/ThesisDoctoral Dissertation Social Science and Health 201