Background
The majority of the world’s population does not have timely access to quality emergency care when emergencies occur.1 2 Despite this fact, a major proportion of low-income and low middle-income countries (LMICs) deaths are attributable to conditions that are amenable to emergency care.2 3 For the purpose of this paper, emergency medical care constitutes care provided to a patient suffering from acute, potentially life-threatening illness in the first few minutes to hours of care, irrespective of the patients’ location. A recent review demonstrated that ‘all 15 leading causes of death and disability-adjusted life years (DALYs) globally with potential emergent manifestations’ (figure 1) and that the burden of emergency conditions was highest in LMICs.2 Many of these patient encounters may never be adequately captured in traditional health information systems.
As emphasised by Reynolds et al, there is a large burden of disease caused by emergency conditions. Furthermore, many important targets of the Sustainable Development Goals (particularly #3 – Ensure healthy lives and promote well-being at all ages) are affected by emergency care, including target 3d, which emphasises the critical importance of the emergency care system for syndromic surveillance and preparedness (figure 2).4–6 Thus, it is imperative that accurate, reliable and timely information regarding emergency conditions is available for policy makers, especially in LMICs where the burden of emergency conditions is most acute. However, LMIC policy makers face frustration when even basic data on emergency care is limited.4 7 8 Current data gaps are both qualitative and quantitative. Many facilities are unable to accurately identify the proportion of acute visits that represent the most severely ill and injured in order to plan their patient care capacity, the number of staff and their levels of training and availability of material resources.4 7 9 In addition, little data are available on patients’ motivations for pursuing emergency care in LMICs or their perception of the quality and acceptability of the care they receive. Furthermore, in some LMICs, patients that die in the first 24–48 hours are classified as ‘Brought in Dead’.10 Such an approach negates the very raison d’etre of emergency medicine as it is these very patients—those that survived to presentation—that represent potentially avertable deaths most in need of emergency care.
The objective of this paper is to describe the role of surveillance and registry in strengthening emergency care and public health, especially in LMICs and discuss challenges and potential solutions for establishing such systems. This paper is the result of work conducted by a multidisciplinary working group, which was established under the auspices of the Fogarty International Center at the National Institutes of Health (NIH) as part of the broader Collaborative for Enhancing Emergency Care in LMICs (CLEER). The working group was composed of 10 experts representing 8 countries (5 LMICs), who applied and were selected to participate in the CLEER project based on their expertise and experience with surveillance and registries in LMICs and emergency medicine. The group was split evenly between researchers and practitioners from LMICs and those from high-income countries (HICs) with extensive experience in LMIC emergency care research. The group met physically at NIH for 2 days in July 2017 and then continued to teleconference several times over the next year.
The working group convened at a workshop and then undertook a literature review regarding the use of surveillance and registries for emergency care in LMICs (figure 3). A search of the PubMed/MEDLINE database keywords related to emergency care system registry, and surveillance research was initially completed by a biomedical librarian at the NIH in February of 2017 in preparation for the July meeting as background material. The search specifically targeted the use of various types of data collection, surveillance systems and registries to collect data on acute care/emergency care in LMICs. LMIC inclusion in the search was based on existing World Bank classifications.11 Search results were limited to those published in English over 10 years (from January 2007 to December 2016) based on the recommendation of the NIH librarian to generate a manageable yet comprehensive list of background material that would be accessible to all participants in a common language, which yielded 550 individual results (online supplementary file 1).
After the NIH meeting, the working group decided to refine the literature for inclusion as a component of this manuscript and screened the articles to identify only those articles that: (A) explicitly focused on emergency care (including acute medical, surgical and trauma presentations for all ages); (B) came from LMIC settings (excluding those from military medical units located in LMICs); and (C) resulted from either surveillance or registries (figure 3). The result of the search was 106 articles in total from LMICs that analysed emergency care surveillance or registry data over the 10-year period (figure 4). This includes a large number published in 2015 from the Pakistan National Emergency Departments Surveillance Project (PAK-NEDS) Emergency Care Surveillance Project in Pakistan, which yielded a spike in articles for that year. Articles were reviewed for methodological keys to successful implementation and for barriers to sustainability.
For the purpose of this paper, we define surveillance as an ongoing, systematic collection, analysis, interpretation and dissemination of health information.12 Emergency surveillance can provide important information about the epidemiology of emergency conditions, the size and scope of emergency health problems, identification of populations at risk, identification of risk factors, recognition of unusual syndromes (such as new infectious outbreak) as well as tracking the effects of public health interventions. We treat emergency care surveillance data collection as being on a spectrum from basic (core data set); expanded to highlight those most critically ill and injured for whom a time sensitive intervention by trained emergency care provider may be most needed; and longitudinal (registry data that include risk factors, causes of presentation, severity of illness, treatments received and outcomes).
Registry, however, is defined as the process of data collection that incorporates longitudinal data on patient care processes, presentation severity and outcomes allowing for assessment of quality of care and performance of the emergency health system for given conditions. Registries are vital tools for understanding the impact of emergency conditions as well as the ability of the emergency care system to treat them effectively.
In addition, we limit discussion here to emergency surveillance primarily within the health sector while making suggestions for how data from other sectors can inform emergency care planning. Furthermore, we focus on core data collection with reference to prior guidelines such as the WHO Injury Surveillance Guidelines13 and the newly updated minimum datasets for emergency care (trauma and non-trauma, 2017).14–16 Examples of recent emergency care surveillance and registries were selected for illustration of both best practices as well as challenges faced in implementation of such programme (online supplementary appendix 1 and 2).