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      Making stillbirths count, making numbers talk - Issues in data collection for stillbirths

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          Abstract

          Background

          Stillbirths need to count. They constitute the majority of the world's perinatal deaths and yet, they are largely invisible. Simply counting stillbirths is only the first step in analysis and prevention. From a public health perspective, there is a need for information on timing and circumstances of death, associated conditions and underlying causes, and availability and quality of care. This information will guide efforts to prevent stillbirths and improve quality of care.

          Discussion

          In this report, we assess how different definitions and limits in registration affect data capture, and we discuss the specific challenges of stillbirth registration, with emphasis on implementation. We identify what data need to be captured, we suggest a dataset to cover core needs in registration and analysis of the different categories of stillbirths with causes and quality indicators, and we illustrate the experience in stillbirth registration from different cultural settings. Finally, we point out gaps that need attention in the International Classification of Diseases and review the qualities of alternative systems that have been tested in low- and middle-income settings.

          Summary

          Obtaining high-quality data will require consistent definitions for stillbirths, systematic population-based registration, better tools for surveys and verbal autopsies, capacity building and training in procedures to identify causes of death, locally adapted quality indicators, improved classification systems, and effective registration and reporting systems.

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          Most cited references88

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          Community-based interventions for improving perinatal and neonatal health outcomes in developing countries: a review of the evidence.

          Infant and under-5 childhood mortality rates in developing countries have declined significantly in the past 2 to 3 decades. However, 2 critical indicators, maternal and newborn mortality, have hardly changed. World leaders at the United Nations Millennium Summit in September 2000 agreed on a critical goal to reduce deaths of children <5 years by two thirds, but this may be unattainable without halving newborn deaths, which now comprise 40% of all under-5 deaths. Greater emphasis on wide-scale implementation of proven, cost-effective measures is required to save women's and newborns' lives. Approximately 99% of neonatal deaths take place in developing countries, mostly in homes and communities. A comprehensive review of the evidence base for impact of interventions on neonatal health and survival in developing-country communities has not been reported. This review of community-based antenatal, intrapartum, and postnatal intervention trials in developing countries aimed to identify (1) key behaviors and interventions for which the weight of evidence is sufficient to recommend their inclusion in community-based neonatal care programs and (2) key gaps in knowledge and priority areas for future research and program learning. Available published and unpublished data on the impact of community-based strategies and interventions on perinatal and neonatal health status outcomes were reviewed. Evidence was summarized systematically and categorized into 4 levels of evidence based on study size, location, design, and reported impact, particularly on perinatal or neonatal mortality. The evidence was placed in the context of biological plausibility of the intervention; evidence from relevant developed-country studies; health care program experience in implementation; and recommendations from the World Health Organization and other leading agencies. A paucity of community-based data was found from developing-country studies on health status impact for many interventions currently being considered for inclusion in neonatal health programs. However, review of the evidence and consideration of the broader context of knowledge, experience, and recommendations regarding these interventions enabled us to categorize them according to the strength of the evidence base and confidence regarding their inclusion now in programs. This article identifies a package of priority interventions to include in programs and formulates research priorities for advancing the state of the art in neonatal health care. This review emphasizes some new findings while recommending an integrated approach to safe motherhood and newborn health. The results of this study provide a foundation for policies and programs related to maternal and newborn health and emphasizes the importance of health systems research and evaluation of interventions. The review offers compelling support for using research to identify the most effective measures to save newborn lives. It also may facilitate dialogue with policy makers about the importance of investing in neonatal health.
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            A scandal of invisibility: making everyone count by counting everyone.

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              Five years after To Err Is Human: what have we learned?

              Five years ago, the Institute of Medicine (IOM) called for a national effort to make health care safe. Although progress since then has been slow, the IOM report truly "changed the conversation" to a focus on changing systems, stimulated a broad array of stakeholders to engage in patient safety, and motivated hospitals to adopt new safe practices. The pace of change is likely to accelerate, particularly in implementation of electronic health records, diffusion of safe practices, team training, and full disclosure to patients following injury. If directed toward hospitals that actually achieve high levels of safety, pay for performance could provide additional incentives. But improvement of the magnitude envisioned by the IOM requires a national commitment to strict, ambitious, quantitative, and well-tracked national goals. The Agency for Healthcare Research and Quality should bring together all stakeholders, including payers, to agree on a set of explicit and ambitious goals for patient safety to be reached by 2010.
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                Author and article information

                Journal
                BMC Pregnancy Childbirth
                BMC Pregnancy and Childbirth
                BioMed Central
                1471-2393
                2009
                17 December 2009
                : 9
                : 58
                Affiliations
                [1 ]Department of Genes and Environment, Division of Epidemiology, Norwegian Institute of Public Health, P.O. Box 4404 Nydalen, N-0403 Oslo, Norway
                [2 ]Department of Obstetrics and Gynaecology, University Medical Centre Groningen, University of Groningen, The Netherlands
                [3 ]Department of Obstetrics and Gynaecology, University Hospital, Assiut, Egypt
                [4 ]Department of Chronic Diseases, Division of Epidemiology, Norwegian Institute of Public Health, Oslo, Norway
                [5 ]Department of Reproductive Health and Research, World Health Organization, Geneva, Switzerland
                [6 ]National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA
                [7 ]Reproductive Health Branch, United Nations Population Fund, Geneva, Switzerland
                [8 ]Department of Obstetrics and Gynaecology, University of Queensland
                [9 ]Mater Mothers' Research Centre, Mater Health Services, Brisbane, Australia
                [10 ]Center of International Health, University of Bergen, Bergen, Norway
                [11 ]Effective Care Research Unit, Eastern Cape Department of Health, Universities of the Witwatersrand and Fort Hare, South Africa
                [12 ]Department of Community Health Sciences, Aga Khan University, Karachi, Pakistan
                [13 ]Saving Newborn Lives, Cape Town, South Africa
                [14 ]Department of Obstetrics and Gynecology, Faculty of Medicine and Public Health, Khon Kaen University, Khon Kaen, Thailand
                [15 ]Department of Obstetrics and Gynaecology, University of Pretoria School of Medicine, Pretoria, South Africa
                [16 ]Department of Nutrition, Harvard School of Public Health, Harvard University, Boston, USA
                Article
                1471-2393-9-58
                10.1186/1471-2393-9-58
                2805601
                20017922
                dc8ba6dd-ce5d-43a4-9883-dc0c16b008f2
                Copyright ©2009 Frøen et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 17 July 2009
                : 17 December 2009
                Categories
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                Obstetrics & Gynecology
                Obstetrics & Gynecology

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