An INDEPTH look at global data collection

Abstract

To 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. The field of global health metrics is currently dominated by large-scale modelling endeavours, usually run by high-income country (HIC) research institutes working far from areas where information on burdens of various diseases can have the greatest effect in health system strengthening. The Institute of Health Metric and Evaluation's (IHME) Global Burden of Disease (GBD) project is one such initiative, but it is far from the only one. Many research institutes have teams of researchers feeding samples of locally collected data into modelling algorithms to generate estimates of disease burden. The IHME project, though, is perhaps the most well recognised provider of population-based estimates of health and disease. Although previously criticised for their methods and insufficient consultation, there is no doubt that the information provided by the IHME has been—and will be—pivotal in changing the way we think about disease and health care on a macroscopic level. But Herculean—or perhaps Sisyphean—as these efforts are, there is an awareness from all quarters that they are highly modelled and are unlikely to accurately show what is needed by individual countries for local health system strengthening. It is therefore heartening to read through the programme of the annual International Network for the Demographic Evaluation of Populations and Their Health (INDEPTH) scientific conference, which is held in Addis Ababa on November 11–13, 2015. INDEPTH started in 1998 with the aim of making people visible, collecting data in a longitudinal manner using standardised methods and making that data available to all through publications and data sharing. The data comes from research groups in 20 low-income and middle-income countries (LMICs) in Asia, Africa, and Oceania that use Health and Demographic Surveillance Systems (HDSS) to capture information on over 3 million people; births, deaths, migration, and causes of death (including those due to non-communicable diseases) via verbal autopsy. Through their new Comprehensive Health and Epidemiological Surveillance System (CHESS) initiative, research groups will be collecting biological data at their field site laboratories and integrating this with information collected via HDSS. Linking individuals' biological and health diagnosis data with HDSS information will require a patient identification and data capture system that could potentially be a microcosm of the sort of system that could capture data on a large scale in LMICs. Hence, the CHESS initiative could become one of 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 to use data for global disease monitoring. This, and other nascent grass roots data collection initiatives are a breath of fresh air in the global health arena. Health systems improvement should not be—indeed, cannot be—about global targets, the wishes of HIC advocacy groups, grant funding opportunities for researchers, or impact factors of journals. Health system improvement has to be motivated by recognition of local need. There is a desperate urgency to develop systems that capture data that users and providers of health-care services need, at the level where data can best be used for improvement of the health of individuals. This approach starts with the level of the needs of individuals, and passes through levels of need of the local care providers, local governments, and national governments. In view of the fragmentation of health care systems in many countries, of all income levels, this is no easy task. But to ensure that all individuals—their births, their deaths, their diseases, and their treatments—count, investors who have an interest in improving the lives of individuals must focus their attention on working with those in-country to find the best solutions to capture data of all people in those countries. People interested in data collection should collaborate to ensure synergy; now is the time to forgo individual ego and focus on shared achievements. INDEPTH, has started along this path. We sincerely hope that others will join them. CHESS: an innovative concept for a new generation of population surveillanceMomentum towards the post-2015 Sustainable Development Goals (SDGs) is encouraging, after the UN Conference on Funding for Development in Addis Ababa, Ethiopia,1 and the UN Sustainable Development Summit.2 However, one of the major difficulties in assessment of the Millennium Development Goals (MDGs) has been the absence of effective measurability. Data of better quality and greater quantity, especially at the subnational level, must underpin the SDGs. Full-Text PDF Open AccessINDEPTH Network: contributing to the data revolution“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.1 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. Full-Text PDF