1 Introduction
‘What is measured matters so data matters’ [1]. These are the words of Dr. Tedros Adhanom Ghebreyesus who , on July 1 2017, became the ninth Director-General of the World Health Organization (WHO). Dr. Tedros is steering WHO’s contribution towards achieving the 17 Sustainable Development Goals (SDGs) and 169 targets of the 2030 Agenda for Sustainable Development, adopted by the United Nations (UN) General Assembly in September 2015. Ten days after his appointment, WHO published its estimate that the cost for 67 low- and middle-income countries (LMICs) to achieve the 13 SDG health targets could range between US $274 and US $371 billion per year in additional spending on health by 2030 [2]. Dr. Tedros asked: ‘Do we want our fellow citizens to die because they are poor?’ vividly describing the human reality behind the statistics that ‘at least 400 million people have no access to essential health services,’ [3] and ‘40% of the world’s population lack social protection’ [4]. He committed that ‘Based on evidence and data, WHO will track progress on how the world is meeting the health-related Sustainable Development Goal indicators.’ [1].
The stakes then are high. But WHO alone cannot track progress towards meeting the SDGs. It is national governments that generate data and use statistics to underpin health policy and planning, and to manage their health systems. The SDG indicators are a subset of hundreds of indicators that governments use to measure progress and benchmark their health sector performance with peer countries, and to report on progress towards national and international goals.
Many LMICs, and some high-income countries (HICs), had difficulty reporting reliable indicators for the earlier Millennium Development Goals (MDGs). The data demands of the SDGs—including multiple targets related to attainment of universal health coverage (UHC)—are exponentially greater. The SDGs have more indicators than the MDGs and countries must disaggregate them to monitor the progress of vulnerable groups. Health data systems in many LMICs are already overloaded, face staff shortages and high turnover, and are chronically under-resourced. The WHO estimates that by 2030 the additional annual cost of strengthening health information systems (HISs) to meet the health SDG in the 67 LMICs will be between US $0.5 billion (progress scenario) and US $0.6 billion (ambitious scenario), less than 0.2 per cent of the total additional health spending needed [2]. If governments invest in human and digital resources to harness data to run their health systems, this money will be well spent.
We describe the evolution of the term HIS from the early 1970s, in parallel with development of computer systems and mobile technology. We explain how a national HIS functions as an integral component of the health system, and in the broader context of a country’s national statistical system, and we describe the users of the data and information the HIS produces. We raise challenges facing national HISs and the need for coordination and good governance. We conclude by exploring the potential for future investments in HISs by examining one country’s plans to revitalise its HIS.
2 Evolution of Health Information Systems
The term HIS first appeared in the literature in the early 1970s at a time when doctors and hospital managers began using mainframe computers to manage patient data. In 1973, Alderson defined a HIS to be ‘a mechanism for the collection, processing, analysis and dissemination of information required for the organisation and operation of health services, and also for research and training’ [5]. In developing his vision of a HIS for the UK National Health Service (NHS), Alderson emphasised that hospital data would not suffice. He advocated for a range of information from a variety of sources ‘to make valid comments on use of resources, costs, variation in medical practice within a given speciality, or the existing inequality of allocation of resources between different patient groups and different geographical areas’ [6]. People have subsequently used the term HIS in different ways, some reflecting Alderson’s comprehensive definition [7, 8] and some using HIS more narrowly to describe routine facility data systems, specific hospital systems or specialised clinical or management sub-systems [9]. In this handbook, we use HIS to describe the structures and processes that bring data together from diverse sources—within and beyond the health sector—to inform planning, monitoring and evaluation of health systems.
During the last decades of the twentieth century, enhanced computing capacity made it easier to manage, link and interrogate data. Health providers and planners in HICs developed information systems using ever-more sophisticated computer software and equipment. Even with limited resources, some LMICs developed or restructured their information systems and others strengthened sub-systems such as disease surveillance and routine facility data systems [7]. The 1978 Alma Ata Declaration of Health for all catalysed development of HISs to enable countries to measure indicators to monitor progress in delivering primary health care [10]. These efforts led to development of health management information systems (HMIS) (also called routine health information systems (RHIS)) to support districts manage their health services. Arrival of the microcomputer simultaneously transformed HIS development, making it easier for governments and projects to move from paper-based to electronic data systems.
Demand for health data has expanded along with expectations for rapid data management and transmission through the Internet. As external donors and development agencies have increased their financial contributions to health, they expect to monitor progress in the programmes they support. When routine data were insufficient or unreliable, agencies have funded programme-specific data collection. Initiatives such as the Global Fund to fight AIDS, Tuberculosis and Malaria (GFATM), the US President’s Emergency Plan for AIDS Relief (PEPFAR) and Gavi the Vaccine Alliance have provided considerable resources to develop innovative measurement approaches and b...