Lene Mikkelsen

A scandal of invisibility: making everyone count by counting everyone

Summary Most people in Africa and Asia are born and die without leaving a trace in any legal record or official statistic. Absence of reliable data for births, deaths, and causes of death are at the root of this scandal of invisibility, which renders most of the worlds poor as unseen, uncountable, and hence uncounted. This situation has arisen because, in some countries, civil registration systems that log crucial statistics have stagnated over the past 30 years. Net of debt relief, official development assistance reached US

A global assessment of civil registration and vital statistics systems: monitoring data quality and progress

80 billion in 2004. Yet because of the weakness in recording vital statistics, we have little authoritative evidence that these funds have their desired effects on either mortality or poverty reduction. Sound recording of vital statistics and cause of death data are public goods that enable progress towards Millennium Development Goals and other development objectives that need to be measured, not only modelled. Vital statistics are most effectively generated by comprehensive civil registration. Civil registration has a dual function, both statistical and legal; it also helps with economic development. 30 years of stagnation will not be overcome quickly, although new efforts to develop national statistical capacities offer a unique opportunity to refocus attention on civil registration. Now is the time to make the long-term goal of comprehensive civil registration in developing countries the expectation rather than the exception. The international health community can assist by sharing information and methods to ensure both the quality of vital statistics and cause of death data, and the appropriate use of complementary and interim registration systems and sources of such data. The continued cost of ignorance borne by countries without civil registration far outweighs the affordable necessity of action.

Civil registration and vital statistics: progress in the data revolution for counting and accountability

Increasing demand for better quality data and more investment to strengthen civil registration and vital statistics (CRVS) systems will require increased emphasis on objective, comparable, cost-effective monitoring and assessment methods to measure progress. We apply a composite index (the vital statistics performance index [VSPI]) to assess the performance of CRVS systems in 148 countries or territories during 1980-2012 and classify them into five distinct performance categories, ranging from rudimentary (with scores close to zero) to satisfactory (with scores close to one), with a mean VSPI score since 2005 of 0·61 (SD 0·31). As expected, the best performing systems were mostly in the European region, the Americas, and Australasia, with only two countries from east Asia and Latin America. Most low-scoring countries were in the African or Asian regions. Globally, only modest progress has been made since 2000, with the percentage of deaths registered increasing from 36% to 38%, and the percentage of children aged under 5 years whose birth has been registered increasing from 58% to 65%. However, several individual countries have made substantial improvements to their CRVS systems in the past 30 years by capturing more deaths and improving accuracy of cause-of-death information. Future monitoring of the effects of CRVS strengthening will greatly benefit from application of a metric like the VSPI, which is objective, costless to compute, and able to identify components of the system that make the largest contributions to good or poor performance.

Towards universal civil registration and vital statistics systems: the time is now

New momentum for civil registration and vital statistics (CRVS) is building, driven by the confluence of growing demands for accountability and results in health, improved equity, and rights-based approaches to development challenges, and by the immense potential of innovation and new technologies to accelerate CRVS improvement. Examples of country successes in strengthening of hitherto weak systems are emerging. The key to success has been to build collaborative partnerships involving local ownership by several sectors that span registration, justice, health, statistics, and civil society. Regional partners can be important to raise awareness, set regional goals and targets, foster country-to-country exchange and mutual learning, and build high-level political commitment. These regional partners continue to provide a platform through which country stakeholders, development partners, and technical experts can share experiences, develop and document good practices, and propose innovative approaches to tackle CRVS challenges. This country and regional momentum would benefit from global leadership, commitment, and support.

Are well functioning civil registration and vital statistics systems associated with better health outcomes

The health and development challenges of the coming decades cannot be tackled effectively without reliable data for births, deaths, and causes of death, which only a comprehensive civil registration and vital statistics (CRVS) system can deliver. Alternative methods such as surveys, censuses, or surveillance are not adequate substitutes from a statistical perspective, and do not provide individuals with the legal documentation they need to benefit from services and participate fully in a modern society. Research is needed to generate and disseminate evidence about which CRVS strategies work best in which contexts and to ensure that the potential benefits of innovation are successfully scaled up, and that possible pitfalls are avoided. Research findings need to be compiled and made readily accessible to users for policy making, programming, and practice. Modernisation of CRVS systems necessitates new, broad-based national and international coalitions. The global architecture for CRVS, so far dominated by UN agencies, should extend to include bilateral donors, funds, foundations, non-governmental organisations, the private sector, academic institutions, and civil society. This change is essential to ensure that further development of CRVS systems is inclusive, participatory, multisectoral, and has a strong evidence base.

A composite metric for assessing data on mortality and causes of death: the vital statistics performance index

In this Series paper, we examine whether well functioning civil registration and vital statistics (CRVS) systems are associated with improved population health outcomes. We present a conceptual model connecting CRVS to wellbeing, and describe an ecological association between CRVS and health outcomes. The conceptual model posits that the legal identity that civil registration provides to individuals is key to access entitlements and services. Vital statistics produced by CRVS systems provide essential information for public health policy and prevention. These outcomes benefit individuals and societies, including improved health. We use marginal linear models and lag-lead analysis to measure ecological associations between a composite metric of CRVS performance and three health outcomes. Results are consistent with the conceptual model: improved CRVS performance coincides with improved health outcomes worldwide in a temporally consistent manner. Investment to strengthen CRVS systems is not only an important goal for individuals and societies, but also a development imperative that is good for health.

Systematic review of statistics on causes of deaths in hospitals: strengthening the evidence for policy-makers

BackgroundTimely and reliable data on causes of death are fundamental for informed decision-making in the health sector as well as public health research. An in-depth understanding of the quality of data from vital statistics (VS) is therefore indispensable for health policymakers and researchers. We propose a summary index to objectively measure the performance of VS systems in generating reliable mortality data and apply it to the comprehensive cause of death database assembled for the Global Burden of Disease (GBD) 2013 Study.MethodsWe created a Vital Statistics Performance Index, a composite of six dimensions of VS strength, each assessed by a separate empirical indicator. The six dimensions include: quality of cause of death reporting, quality of age and sex reporting, internal consistency, completeness of death reporting, level of cause-specific detail, and data availability/timeliness. A simulation procedure was developed to combine indicators into a single index. This index was computed for all country-years of VS in the GBD 2013 cause of death database, yielding annual estimates of overall VS system performance for 148 countries or territories.ResultsThe six dimensions impacted the accuracy of data to varying extents. VS performance declines more steeply with declining simulated completeness than for any other indicator. The amount of detail in the cause list reported has a concave relationship with overall data accuracy, but is an important driver of observed VS performance. Indicators of cause of death data quality and age/sex reporting have more linear relationships with simulated VS performance, but poor cause of death reporting influences observed VS performance more strongly. VS performance is steadily improving at an average rate of 2.10% per year among the 148 countries that have available data, but only 19.0% of global deaths post-2000 occurred in countries with well-performing VS systems.ConclusionsObjective and comparable information about the performance of VS systems and the utility of the data that they report will help to focus efforts to strengthen VS systems. Countries and the global health community alike need better intelligence about the accuracy of VS that are widely and often uncritically used in population health research and monitoring.

Hospital cause-of-death statistics: what should we make of them?

Abstract Objective To systematically review the reliability of hospital data on cause of death and encourage periodic reviews of these data using a standard method. Methods We searched Google Scholar, Pubmed and Biblioteca Virtual de la Salud for articles in English, Spanish and Portuguese that reported validation studies of data on cause of death. We analysed the results of 199 studies that had used medical record reviews to validate the cause of death reported on death certificates or by the vital registration system. Findings The screened studies had been published between 1983 and 2013 and their results had been reported in English (n = 124), Portuguese (n = 25) or Spanish (n = 50). Only 29 of the studies met our inclusion criteria. Of these, 13 had examined cause of death patterns at the population level – with a view to correcting cause-specific mortality fractions – while the other 16 had been undertaken to identify discrepancies in the diagnosis for specific diseases before and after medical record review. Most of the selected studies reported substantial misdiagnosis of causes of death in hospitals. There was wide variation in study methodologies. Many studies did not describe the methods used in sufficient detail to be able to assess the reproducibility or comparability of their results. Conclusion The assumption that causes of death are being accurately reported in hospitals is unfounded. To improve the reliability and usefulness of reported causes of death, national governments should do periodic medical record reviews to validate the quality of their hospital cause of death data, using a standard.

Revisión sistemática de las estadísticas sobre las causas de muerte en los hospitales: fortalecimiento de la evidencia para los creadores de políticas

is the preferred standard for generating cause-of-death statistics. Most deaths whose cause is certified occur in hospitals. Although not all hospitals have the same diagnos -tic tools, it seems reasonable to expect hospital-based certifying physicians to correctly identify patients’ underlying causes of death, since hospitals usually have established clinical protocols for monitoring disease progression. After all, if physicians in hospitals cannot correctly ascertain their patients’ cause of death, who can?Cause-of-death statistics from hospitals are routinely amalgamated – along with mortality statistics from other sources – to constitute the es-sential statistics on the health of a population. Such statistics are widely used by governments, researchers, do-nors and global development agencies, often uncritically, on the assumption that they reliably capture a country’s epidemiological profile. They are used to periodically review health priorities, set research agendas and monitor progress towards national and global health and development goals. We take for granted that such data are correct. But are they?That the answer is a resounding no is only a part of the problem. More wor -rying perhaps is the fact that custodians of national mortality data systems fail to grasp the importance of periodically assessing the accuracy of hospital cause-of-death data. Physicians in hospitals may lack the time, incentives, diagnostic facilities or training to correctly certify causes of death and seldom understand that their diagnoses guide national health priorities. Medical records’ de-partments, which code death certificates and compile the data into cause-of-death tables by age and sex, are often understaffed, lack rigorous statistical protocols for checking data quality, and may not appreciate the epidemiological and statistical importance of their work. Thus, hospital cause-of-death data, even from advanced tertiary hospitals, can be expected to contain errors. But how common are these errors and are they serious enough to make the data unsuitable for informing public policy and research?Remarkably, the quality of hospital-based mortality data has seldom been investigated. In a recent review, Ram-patige et al.

Revisión sistemática de las estadísticas sobre las causas de muerte en los hospitales

Abstract Objective To systematically review the reliability of hospital data on cause of death and encourage periodic reviews of these data using a standard method. Methods We searched Google Scholar, Pubmed and Biblioteca Virtual de la Salud for articles in English, Spanish and Portuguese that reported validation studies of data on cause of death. We analysed the results of 199 studies that had used medical record reviews to validate the cause of death reported on death certificates or by the vital registration system. Findings The screened studies had been published between 1983 and 2013 and their results had been reported in English (n = 124), Portuguese (n = 25) or Spanish (n = 50). Only 29 of the studies met our inclusion criteria. Of these, 13 had examined cause of death patterns at the population level – with a view to correcting cause-specific mortality fractions – while the other 16 had been undertaken to identify discrepancies in the diagnosis for specific diseases before and after medical record review. Most of the selected studies reported substantial misdiagnosis of causes of death in hospitals. There was wide variation in study methodologies. Many studies did not describe the methods used in sufficient detail to be able to assess the reproducibility or comparability of their results. Conclusion The assumption that causes of death are being accurately reported in hospitals is unfounded. To improve the reliability and usefulness of reported causes of death, national governments should do periodic medical record reviews to validate the quality of their hospital cause of death data, using a standard.