Civil registration systems and vital statistics: successes and missed opportunities

Vital statistics generated through civil registration systems are the major source of continuous monitoring of births and deaths over time. The usefulness of vital statistics depends on their quality. In the second paper in this Series we propose a comprehensive and practical framework for assessment of the quality of vital statistics. With use of routine reports to the UN and cause-of-death data reported to WHO, we review the present situation and past trends of vital statistics in the world and note little improvement in worldwide availability of general vital statistics or cause-of-death statistics. Only a few developing countries have been able to improve their civil registration and vital statistics systems in the past 50 years. International efforts to improve comparability of vital statistics seem to be effective, and there is reasonable progress in collection and publication of data. However, worldwide efforts to improve data have been limited to sporadic and short-term measures. We conclude that countries and developmental partners have not recognised that civil registration systems are a priority.     

Surveillance methods to monitor the impact of HIV therapy programmes in resource-constrained countries

To monitor the collective national impact of initiatives to expand the availability of HIV therapy including antiretroviral treatment (ART) countries need to monitor the proportion of HIV-infected individuals who are receiving HIV therapy, whether morbidity is decreasing, and HIV-infected individuals are experiencing increased survival, and if there is an overall decrease in the number of individuals dying of HIV. However, in many resource-constrained countries these data are limited or unavailable. Morbidity surveillance relies primarily on AIDS case reporting, but severe under-reporting limits the usefulness of these data. A variety of AIDS case definitions are in use and case definitions do not concur with clinical staging definitions. Harmonizing AIDS case definitions with clinical staging, providing resources and training to improve reporting, and using other surveillance systems, such as tuberculosis programme data to monitor morbidity are urgently needed. A cohort analysis of individuals in ART programmes to follow the progress and outcomes of these patients longitudinally is important to monitor quality of care and impact. Because the rapid scale-up of ART programmes may result in HIV drug resistance, surveillance for drug resistant viruses is also required. Very few resource-constrained countries have well-functioning vital registration systems to assess mortality trends and cause-specific mortality. Alternative approaches to measuring mortality trends, such as sample vital registration with verbal autopsy should be considered. Strong commitments from governments, international organizations and other partners are needed to establish and strengthen the HIV morbidity and mortality monitoring surveillance systems.     

Health statistics now: are we making the right investments?

Increases in international funding for health have been accompanied by accelerating demand for more and better statistics, which are needed to track performance and ensure accountability. Worldwide interest in the monitoring of development, as exemplified in the Millennium Development Goals (MDGs), generates pressure for high-quality and timely data for reporting on country progress. This rapid escalation of demand has exposed major gaps in the supply of health statistics for developing countries but also provides major opportunities to increase the supply and use of sound health statistics. First, the emphasis on monitoring and evaluation is leading to proliferation of indicators and excessive reporting requirements, and needs to be refocused on systematic investments in data generation and analysis. Second, the risk of inadequate or poorly targeted investments can be kept to a minimum by understanding the causes of poor availability of health statistics, including lack of accurate measurement instruments, application of suboptimum methods of data collection, and inadequate use of methods and analyses to produce comparable estimates. Third, the preoccupation with MDGs does not take into account the rapid health transition, which implies that health statistics should systematically include a much wider array of health issues from acute infectious diseases to chronic non-communicable diseases and injuries, disaggregated by socioeconomic position. Fourth, the growing number of national household surveys, which are the main source of most population health statistics, need to be streamlined into cohesive and comprehensive country health survey programmes. Now is the time to accelerate the production and use of accurate, complete, and timely health statistics for decision-making by investing in country health information systems that should be based on an efficient and effective mix of standardised methods of data collection and analysis that meet country and international needs.     

Verbal autopsy for neurological diseases

Verbal autopsy is an interview-based technique to determine the cause distribution of death in a population. The use of verbal autopsy for understanding neurological diseases is crucial to burden of disease analyses in many countries, particularly in locations where civil registration systems are non-functioning or absent. We review the purposes, strengths, and weaknesses in the use of verbal autopsy for neurological diseases.     

Estimation of mortality from vital registrations in South Africa

Sentinel surveillance surveys combined with epidemiological/demographic models have been used in monitoring trends in mortality due to HIV in South Africa as in most other countries. The potential biases in such surveys have been highlighted in recent studies. South Africa's HIV prevalence (29.5% among pregnant women attending antenatal clinics in 2004) is one of the highest in the world. National HIV prevalence from population-based survey has been carried out twice in South Africa, but is of limited use as a surveillance system independent of antenatal data. The use of vital registration in monitoring HIV related mortality has been largely unexplored. This study utilises data on registered deaths for the period 1997-2001 to estimate trends in mortality and TB/HIV related death rates in South Africa. The analysis utilizes the Growth Balance method to estimate the completeness of the death records from the registration system, and hence an adjustment factor for the registered deaths including TB/HIV related deaths in the period. The results indicate that coverage of registration of deaths in South Africa has increased over time but the completeness of registration of female deaths lags behind completeness of registration of male deaths. The absolute number of deaths is estimated to have increased from about 400,000 in 1997 to about 565,000 in 2002. Crude HIV related plus TB-AIDS death rate is estimated to have increased from about 9.6 per 10,000 in 1997 to about 19.1 per 10,000 in 2002. The increase in the number of deaths could not be attributed to population growth.     

Institutional radicalization, the state, and the development process in Africa

The concept of "institutional radicalization" or "the changing of institutions from their roots" is put forward as critical for understanding the manner in which civil societies in most African countries have been grappling with the challenges of development. Given the well embedded precapitalist social formation in most African countries, various institutions have been radicalized around such critical identities as age, gender, land, occupation, credit, community, and rituals of solidarity to promote development. However, until the state intervenes to legitimize these initiatives of civil societies, their full impact on the development process is bound to be moot. The enormous tasks entailed in such legitimization through identifying, registering, realigning, providing incentives, directing, and monitoring these radicalized institutions remain critical and imperative for African countries if they are to accelerate and deepen the extent of their integration into the global free market economy and democratic governance.     

Vital statistics: mechanisms of improvement

Within the realm of basic statistics, information on vital facts represents a main tool for the study of the movement and dynamics of a population. Despite their importance, vital statistics in developing countries have had a limited development due to financial, cultural, geographical and coordination factors among the different institutions involved in recording vital statistics. Since 1982, Mexico has experienced a radical change in its system of vital statistics, which remained almost untouched for close to a century. Now (1988), the Mexican system of vital statistics has a completely modified and updated structure. This new structure permits interinstitutional actions which are necessary in order to achieve the consolidation of the system of vital statistics in Mexico.     

Systematic Review: Estimation of global burden of non-suppurative sequelae of upper respiratory tract infection: rheumatic fever and post-streptococcal glomerulonephritis

Objectives To establish the incidence of post‐streptococcal glomerulonephritis (PSGN) and acute rheumatic fever, the prevalence of rheumatic heart disease (RHD), and to estimate morbidity and mortality caused by these diseases globally. Methods Systematic literature review and review of World Health Organisation (WHO) vital registration data (VRD). Results Incidence and prevalence of rheumatic fever and RHD show very significant global variation. The greatest burden was found in sub‐Saharan Africa, the lowest in North America. The highest mortality rates from these two diseases were reported in the indigenous populations of Australia (23.8 per 100 000). Among countries with VRD, the highest mortality was found in Mauritius (4.32 per 100 000). A few studies reported mortality from PSGN and these reported low mortality rates (mean 0.028 per 100 000 in developing countries). Conclusion Lack of data from key parts of the world limits our ability to make precise statements of disease burden. Further research and surveillance is required to generate more primary data to inform future estimates.     

Tuberculosis and tuberculosis/HIV/AIDS-associated mortality in Africa: the urgent need to expand and invest in routine and research autopsies

Frequently quoted statistics that tuberculosis and human immunodeficiency virus (HIV)/AIDS are the most important infectious causes of death in high-burden countries are based on clinical records, death certificates, and verbal autopsy studies. Causes of death ascertained through these methods are known to be grossly inaccurate. Most data from Africa on mortality and causes of death currently used by international agencies have come from verbal autopsy studies, which only provide inaccurate estimates of causes of death. Autopsy rates in most sub-Saharan African countries have declined over the years, and actual causes of deaths in the community and in hospitals in most sub-Saharan African countries remain unknown. The quality of cause-specific mortality statistics remains poor. The effect of various interventions to reduce mortality rates can only be evaluated accurately if cause-specific mortality data are available. Autopsy studies could have particular relevance to direct public health interventions, such as vaccination programs or preventive therapy, and could also allow for study of background levels of subclinical tuberculosis disease, Mycobacterium tuberculosis-HIV coinfection, and other infectious and noncommunicable diseases not yet clinically manifest. Autopsies performed soon after death may represent a unique opportunity to understand the pathogenesis of M. tuberculosis and the pathogenesis of early deaths after initiation of antiretroviral therapy. The few autopsies performed so far for research purposes have yielded invaluable information and insights into tuberculosis, HIV/AIDS, and other opportunistic infections. Accurate cause-specific mortality data are essential for prioritization of governmental and donor investments into health services to reduce morbidity and mortality from deadly infectious diseases such as tuberculosis and HIV/AIDS. There is an urgent need for reviving routine and research autopsies in sub-Saharan African countries.     

Compulsory Commitment to Care of Substance Misusers: International Trends during 25 Years

Purpose: The study explores international trends in law on compulsory commitment to care of substance misusers (CCC), and two subtypes - civil CCC and CCC within criminal justice legislation - as well as maximum length and amount of applications of such care. Method: The time period covers more than 25 years, and a total of 104 countries and territories. The study is based on available data in three times of observation (1986, 1999 and 2009). Applications of CCC in number of cases are studied on European level for the years 2002-2006. Trends are analyzed using nonparametric tests and general linear models for repeated measures. Findings are discussed from contextual analysis. Result: There is a trend towards decrease in the number of countries worldwide having civil CCC legislation after the millennium, while CCC under criminal law has increased since the mid-1980s, resulting in some total net decrease. The shift results in longer mean duration of CCC and an increase in the number of cases sentenced. Conclusion: There is a risk that the shift from civil CCC to penal CCC implies more focus on young out-acting males in compulsory treatment and that the societal responsibility for more vulnerable persons might be neglected.     

Global health status: two steps forward, one step back

Impressive improvements have occurred in global health status in the past century. Unfortunately, these improvements have not been shared equally and health in equalities within and among countries are entrenched. The fragility of health gains has been seen in response to economic, political, and social changes changes, and civil disruption. The limitations of health-status measure hinder our ability to map health trends except in the simplest way. There is an urgent need for better regional and national health surveillance systems to underpin efforts to address the complex mixture of old and new health concerns.     

Investing for Impact: The Global Fund Approach to Measurement of AIDS Response

The Global Fund raises and invests nearly US$4 billion a year to support programs run in more than 140 countries. The Global Fund strategy 2012–2016 is focused on “Investing for Impact”. In order to accomplish this, timely and accurate data are needed to inform strategies and prioritize activities to achieve greater coverage with quality services. Monitoring and evaluation is intrinsic to the Global Fund’s system of performance-based funding. The Global Fund invests in strengthening measurement and reporting of results at all stages of the grant cycle. The Global Fund approach to measurement is based on three key principles—(1) simplified reporting: the Global Fund has updated its measurement guidance to focus on impact, coverage and quality with the use of a harmonized set of indicators. (2) Supporting data systems—based on a common framework developed and supported by partners, it promotes investment in five common data systems: routine reporting including HMIS; Surveys—population based and risk group surveys; Analysis, reviews and transparency; Administrative and financial data sources; and, Vital registration systems. (3) Strengthen data use: the Global Fund funding encourages use of data at all levels—national, subnational and site level. Countries do not automatically prioritize M&E but when guidance, tools and investments are available, there is high level utilization of M&E systems in program design, planning, implementation, and results reporting. An in-depth analysis of the available data helps the Global Fund and countries to direct investments towards interventions where impact could be achieved and focus on target population groups and geographic areas that are most affected.     

Malumfashi Endemic Diseases Research Project XXI. Some aspects of the collection of demographic data

This paper considers some of the procedures used and problems encountered in the collection of demographic data for a large-scale medical project: the Endemic Diseases Research Project at Malumfashi in northern Nigeria, 1974-1979. 43,216 people were enumerated and a subset of 26,100 were visited monthly for one year for the purpose of registration of vital events. The majority of problems encountered are relevant to similar studies in developing countries. Some difficulties cannot be avoided, but it is considered helpful to identify them. Other situations, however, deserve particular attention, such as the development of adequate on-site data-checking mechanisms, as these are areas in which future programmes could benefit from the experience of the demographic studies in Malumfashi. More effort still needs to be put into the improvement of data collection methods themselves.     

Identifying deaths from AIDS in South Africa

OBJECTIVE: To quantify the HIV/AIDS deaths misclassified to AIDS-related conditions in South Africa. DESIGN: Retrospective analysis of vital registration data. METHODS: Cause-specific death rates for 1996 and 2000-2001 were calculated using vital registration cause-of-death profiles applied to a model (ASSA2000) estimate of total mortality rates by age and sex. The difference in the age-specific death rates for these two periods was examined to identify conditions where there was a noticeable increase in mortality following the same age pattern as the HIV deaths, thus likely to be misclassified AIDS deaths. RESULTS: The increase in the age-specific death rates for HIV-related deaths showed a distinct age pattern, which has been observed elsewhere. Out of the 22 potential causes of death investigated, there were nine that increased in the same distinct age pattern (tuberculosis, pneumonia, diarrhoea, meningitis, other respiratory disease, non-infective gastroenteritis, other infectious and parasitic diseases, deficiency anaemias and protein energy malnutrition) and could be considered AIDS-related conditions. The increase in these conditions accounted for 61% of the total deaths related to HIV/AIDS. When added to the deaths classified as HIV-related on the death certificate, the total accounts for 93% of the ASSA2000 model estimates of the number of AIDS deaths in 2000. CONCLUSION: As a large proportion of AIDS deaths appear to be classified to AIDS-related conditions, without reference to HIV, interpretation of death statistics in South Africa cannot be made on face value as a large proportion of deaths caused by HIV infection are misclassified.     

Drug susceptibility testing of Mycobacterium tuberculosis: a neglected problem at the turn of the century.

The prevailing opinion in most of the world is that drug susceptibility testing of Mycobacterium tuberculosis isolates may not be necessary, especially in countries where the diagnosis of tuberculosis is based predominantly on sputum smear examination without culture isolation, and even if it were functionally important it is too expensive to be practical. However, we believe that the spread of primary drug resistance calls for immediate action to prevent the real threat in a number of countries of an epidemic of incurable polyresistant tuberculosis. One step in this direction, among other necessary measures, is implementation of a system for timely detection of drug resistance in new patients. An overview of the currently available methods for drug susceptibility testing, and those under development, is presented in this article. Our aim is to stimulate discussion regarding where, when, and which methods can and should be implemented now, and which of them has the best potential for the future. This overview includes phenotypic approaches based on conventional cultivation and other techniques, as well as perspectives for the genotypic principle. Regardless of the methods chosen for now or to be implemented in the future, they are all laboratory methods, and we contend that dreams of a revolutionary method which can do away with the laboratory are unrealistic, at least for the time being. We argue that it is essential to create a system of direct, centralized laboratory services in order to make drug susceptibility testing reliable, practical and affordable. Such centralized laboratories would provide both more timely and trustworthy diagnosis of tuberculosis, and facilitate detection of primary drug resistance. Although such systems would require significant initial investment, we suggest that, over time, they would prove highly cost-effective for many countries.     

Salaries and incomes of health workers in sub-Saharan Africa

Public-sector health workers are vital to the functioning of health systems. We aimed to investigate pay structures for health workers in the public sector in sub-Saharan Africa; the adequacy of incomes for health workers; the management of public-sector pay; and the fiscal and macroeconomic factors that impinge on pay policy for the public sector. Because salary differentials affect staff migration and retention, we also discuss pay in the private sector. We surveyed historical trends in the pay of civil servants in Africa over the past 40 years. We used some empirical data, but found that accurate and complete data were scarce. The available data suggested that pay structures vary across countries, and are often structured in complex ways. Health workers also commonly use other sources of income to supplement their formal pay. The pay and income of health workers varies widely, whether between countries, by comparison with cost of living, or between the public and private sectors. To optimise the distribution and mix of health workers, policy interventions to address their pay and incomes are needed. Fiscal constraints to increased salaries might need to be overcome in many countries, and non-financial incentives improved.     

Wearable devices for cardiac arrhythmia detection: a new contender?

There has been increased consumer uptake of smart devices and wearable technology. They facilitate non‐invasive, ambulatory assessment of numerous cardiac indices, including the heart rate and rhythm. Several studies have reported on the utility and deficiencies of these devices in identifying and monitoring cardiac arrhythmias. The rapid uptake of these consumer devices has the potential to generate vast amounts of biometric data. This coupled with gaps in knowledge pertaining to the optimal management of conditions such as sub clinical atrial fibrillation, may result in unnecessary and expensive downstream testing. An improved understanding of this nascent field by the clinician is vital.     

Contribution of genetics to a new vision in the understanding of inflammatory bowel disease

Inflammatory bowel diseases (IBD), such as Crohn' s disease (CD) and ulcerative colitis (UC), are chronic inflammatory autoimmune conditions of the gastrointestinal tract. Other organs, such as the eyes, skin and articulations, are often affected and IBD may be accompanied by other diseases of autoimmune origin. There is no single etiological factor responsible for the onset of IBD. Recent advances in genetics and in the molecular mechanisms of the proteins coded by these genes have given rise to a new vision in understanding these complex diseases. Activation of specific genes that affect antigen presentation and the handling of cells by innate immunity may lead to autoimmunity with the consequent activation of the major histocompatibility complex (MHC) and multiple cytokines involved in the regulation of acquired immunity. In this review IBD is described as a constellation of diseases that can best be classified as barrier diseases. This vision, developed by Kiel in Germany, includes the idea that changes in our environment due to the westernization of civilization have not been met with adaptation of the innate immune system, and this has given rise to autoimmune diseases. These diseases affect 1-5 of 1000 individuals and represent a major burden on the national health systems of many countries on different continents. On a world scale, a major challenge is to generate interventions to prevent the development of these diseases in Asia, Latin America and Africa.