INDEPTH Network: contributing to the data revolution

Abstract

“We need an information revolution. We need to collect data for decision making and not [just] for reporting purposes.” These were the words of Amir Aman Hagos, State Minister of Health for Ethiopia, at last month's scientific conference of the INDEPTH Network in Addis Ababa, Ethiopia, who reaffirmed his country's resolve to use research evidence for decision making.1Federal Democratic Republic of EthiopiaMinistry of Health. Health Sector Transformation Plan (HSTP) 2015/16-2019/20 (2008-2012 EFY). Federal Ministry of Health, Addis Ababa, August 2015.http://www.moh.gov.et/documents/26765/0/Health+Sector+Transformation+Plan/5542a23a-9bc7-46a2-8c1f-8b32c2603208?version=1.0Google Scholar However, as pointed out in a recent Editorial in The Lancet Diabetes & Endocrinology, data that are systematically collected at local and national levels (eg, through INDEPTH) are mostly absent from published estimates of global morbidity and mortality that largely rely on statistical modelling.2The Lancet Diabetes & EndocrinologyAn INDEPTH look at global data collection.Lancet Diabetes Endocrinol. 2015; 3: 915Summary Full Text Full Text PDF Scopus (3) Google Scholar This is a major missed opportunity.The INDEPTH Network, covering more than 3·5 million people across 53 health and demographic surveillance sites (HDSSs) in 20 low-income and middle-income countries (LMICs), has generated longitudinal, standardised population-based data since 1998 on births, deaths, migration, and causes of death via household interviews and verbal autopsy.3Sankoh O Byass P The INDEPTH Network: filling vital gaps in global epidemiology.Int J Epidemiol. 2012; 41: 579-588Crossref PubMed Scopus (181) Google Scholar INDEPTH data are collected in remote rural districts and informal urban settlements where morbidity and mortality trends are otherwise ignored. Despite substantial global policy contributions—eg, population effectiveness evaluations of maternal and newborn interventions, malaria drugs, and childhood vaccines—HDSS data have so far been under used, not only for global disease estimates but also for local and regional decision making.The HDSSs, each covering an average of 60 000 people, are ideally positioned to contribute to the evolving momentum for civil registration and vital statistic systems in LMICs that aim to more completely register and count births, deaths, causes of death, and other vital events. The production of regular and representative population data is also in line with the UN appeal for a data revolution to monitor the new sustainable development goals.4The United Nations Secretary-General's Independent Expert Advisory Group on a Data Revolution for Sustainable Development (IEAG)A World that Counts. Mobilising the Data Revolution for Sustainable Development, 2014http://www.undatarevolution.org/wp-content/uploads/2014/12/A-World-That-Counts2.pdfGoogle ScholarINDEPTH data could support efforts to track the growing burden of non-communicable diseases and chronic conditions, including HIV/AIDS, which is expected to impose massive new demands on systems for health in LMICs.5Streatfield PK Khan WA Bhuiya A et al.Adult non-communicable disease mortality in Africa and Asia: evidence from INDEPTH Health and Demographic Surveillance System sites.Glob Health Action. 2014; 7: 25365PubMed Google Scholar Timely data for risk factor prevalence—eg, of smoking, obesity, and antimicrobial resistance—and on the population impact of new policy implementation, will be crucial for resource-limited governments to identify and prioritise cost-effective interventions.To do so requires robust systems capturing data that users and providers need, at the level where data can best be used for improvement of the health of individuals.To respond to this gap, the INDEPTH Network is launching a Comprehensive Health and Epidemiological Surveillance System (CHESS) initiative, aiming to include most of the 3·5 million surveyed over time. The CHESS will integrate existing health and demographic population data for cause of death and vital demographics with health facility data, further expanding the collection and linkage of individual biological data. The CHESS initiative will be the first to pilot a system of health information capture that could translate into service development at the local level, while also being useful for those who need data for national and global disease monitoring. We hope that funders will take the opportunity to contribute to this future data revolution, despite the European Union migrant crisis restricting current global health investments.AME, JC, PB, AL, DD, CAM, HC, AJG, PB, and CA are members of the INDEPTH Scientific Advisory Committee (SAC), and OS is the Executive Director of INDEPTH. “We need an information revolution. We need to collect data for decision making and not [just] for reporting purposes.” These were the words of Amir Aman Hagos, State Minister of Health for Ethiopia, at last month's scientific conference of the INDEPTH Network in Addis Ababa, Ethiopia, who reaffirmed his country's resolve to use research evidence for decision making.1Federal Democratic Republic of EthiopiaMinistry of Health. Health Sector Transformation Plan (HSTP) 2015/16-2019/20 (2008-2012 EFY). Federal Ministry of Health, Addis Ababa, August 2015.http://www.moh.gov.et/documents/26765/0/Health+Sector+Transformation+Plan/5542a23a-9bc7-46a2-8c1f-8b32c2603208?version=1.0Google Scholar However, as pointed out in a recent Editorial in The Lancet Diabetes & Endocrinology, data that are systematically collected at local and national levels (eg, through INDEPTH) are mostly absent from published estimates of global morbidity and mortality that largely rely on statistical modelling.2The Lancet Diabetes & EndocrinologyAn INDEPTH look at global data collection.Lancet Diabetes Endocrinol. 2015; 3: 915Summary Full Text Full Text PDF Scopus (3) Google Scholar This is a major missed opportunity. The INDEPTH Network, covering more than 3·5 million people across 53 health and demographic surveillance sites (HDSSs) in 20 low-income and middle-income countries (LMICs), has generated longitudinal, standardised population-based data since 1998 on births, deaths, migration, and causes of death via household interviews and verbal autopsy.3Sankoh O Byass P The INDEPTH Network: filling vital gaps in global epidemiology.Int J Epidemiol. 2012; 41: 579-588Crossref PubMed Scopus (181) Google Scholar INDEPTH data are collected in remote rural districts and informal urban settlements where morbidity and mortality trends are otherwise ignored. Despite substantial global policy contributions—eg, population effectiveness evaluations of maternal and newborn interventions, malaria drugs, and childhood vaccines—HDSS data have so far been under used, not only for global disease estimates but also for local and regional decision making. The HDSSs, each covering an average of 60 000 people, are ideally positioned to contribute to the evolving momentum for civil registration and vital statistic systems in LMICs that aim to more completely register and count births, deaths, causes of death, and other vital events. The production of regular and representative population data is also in line with the UN appeal for a data revolution to monitor the new sustainable development goals.4The United Nations Secretary-General's Independent Expert Advisory Group on a Data Revolution for Sustainable Development (IEAG)A World that Counts. Mobilising the Data Revolution for Sustainable Development, 2014http://www.undatarevolution.org/wp-content/uploads/2014/12/A-World-That-Counts2.pdfGoogle Scholar INDEPTH data could support efforts to track the growing burden of non-communicable diseases and chronic conditions, including HIV/AIDS, which is expected to impose massive new demands on systems for health in LMICs.5Streatfield PK Khan WA Bhuiya A et al.Adult non-communicable disease mortality in Africa and Asia: evidence from INDEPTH Health and Demographic Surveillance System sites.Glob Health Action. 2014; 7: 25365PubMed Google Scholar Timely data for risk factor prevalence—eg, of smoking, obesity, and antimicrobial resistance—and on the population impact of new policy implementation, will be crucial for resource-limited governments to identify and prioritise cost-effective interventions. To do so requires robust systems capturing data that users and providers need, at the level where data can best be used for improvement of the health of individuals. To respond to this gap, the INDEPTH Network is launching a Comprehensive Health and Epidemiological Surveillance System (CHESS) initiative, aiming to include most of the 3·5 million surveyed over time. The CHESS will integrate existing health and demographic population data for cause of death and vital demographics with health facility data, further expanding the collection and linkage of individual biological data. The CHESS initiative will be the first to pilot a system of health information capture that could translate into service development at the local level, while also being useful for those who need data for national and global disease monitoring. We hope that funders will take the opportunity to contribute to this future data revolution, despite the European Union migrant crisis restricting current global health investments. AME, JC, PB, AL, DD, CAM, HC, AJG, PB, and CA are members of the INDEPTH Scientific Advisory Committee (SAC), and OS is the Executive Director of INDEPTH. An INDEPTH look at global data collectionTo a bystander, it is curious that the concept of grass roots data collection has taken so long to gain traction in the global health arena. But the idea of data, systematically and rigorously collected by those who need it at a local level and fed up the chain to those who wish to use it at a global level, seems to be lacking in much published work on global morbidity and mortality. Full-Text PDF