Survey of the perceptions of key stakeholders on the attributes of the South African Notifiable Diseases Surveillance System

Notifiable disease surveillance systems (NDSS) in the 21st century should be capable of rapid identification of priority diseases that cause national, regional or public health emergencies of international concern (PHEIC). An effective and efficient NDSS could enhance the ability of a country to respond rapidly to outbreaks before they become PHEICs. Regular evaluations of the surveillance system are needed to ensure this capability, as well as relevance and usage by the key stakeholders. Furthermore, the PHEICs caused by the Ebola Virus Disease (EVD) outbreak from 2014 to 2016 [1] and the 2016 Zika virus outbreak [2] demonstrated that the status of the NDSS in each country could impact on global health security. Hence the outcome of NDSS evaluations is of relevance to the global community.

At a global level, an independent panel appointed by the World Health Organization (WHO) in response to the EVD outbreak found that countries failed to develop International Health Regulations (IHR) surveillance core capacities [3]. The panel also questioned the reliability of the annual mandatory self-administered IHR assessment questionnaires that are required by WHO of all member states [3]. These findings underscore the need for objective evaluations of the NDSS at country level. Many countries have begun to use to framework developed by the Centers for Disease Control and Prevention (CDC) to evaluate their surveillance systems. [4]

In high-income countries in Europe [5] and Australasia [6, 7], evaluations of the NDSS have focused on data quality, usefulness, acceptability, timeliness, as well as the simplicity of the system. Studies in low- and middle-income countries in the Americas [8, 9], Europe [10], Asia [11], and Africa [12‐14], have found that challenges with laboratories, supervision, monitoring, organisational capacity, staffing and resources impede NDSS functioning. These findings might not be relevant to South Africa as a comparative study of the NDSS in China and the USA found that differences in context, background and resource availability among countries make it difficult to generalize findings from one country to the other [15].

The NDSS in South Africa has been in existence since the late 1970s. The NDSS in South Africa is a paper-based system that tracks 33 medical conditions. In terms of existing legislation, all health care providers are obliged to notify these 33 conditions to their local authority, which in turn reports it to the district, district to province, and province to the NDOH (Fig. 1) [16]. In the preceding 15 years, parallel surveillance systems have been developed for tuberculosis (TB), malaria and vaccine-preventable notifiable diseases. We could only find three evaluations of specific diseases at provincial level in South Africa [17‐19]. However, there has been no systematic and objective evaluation of the NDSS at the national level or an evaluation of the NDSS since the adoption of the IHR in 2007. The need for such an evaluation [20] is critical, in light of health sector reforms in South Africa, which include the implementation of a National Health Insurance System [21] and the establishment of a National Public Health Institute [22]. The involvement of key NDSS stakeholders in evaluations and policy development is critical to obtain their inputs and to build mutual understanding and trust. [23‐25] In this paper, the term stakeholder is used to describe individuals actively involved in the NDSS, or in structures and committees set up to deal with any aspect of the NDSS in South Africa. The stakeholders include individuals involved in disease control and response; disease detection; and health management.

As part of a broader evaluation of the NDSS in South Africa, a survey was conducted among key stakeholders in South Africa on their perceptions of the NDSS attributes of acceptability, flexibility, simplicity, timeliness and usefulness.

During April and May 2015, we invited all communicable diseases coordinators, epidemiologists and surveillance officers at the National Department of Health (NDoH) and all nine provincial health departments, as well as members of the National Surveillance Forum, the South African Malaria Elimination Committee, the South African Expanded Programme on Immunisations Committee and the National and Provincial Outbreak Response Teams (NORT and PORT respectively), to participate in a cross-sectional survey. As experience is an important determinant of the perspectives of the stakeholders, we excluded those not working in a health related field and those with less than 1 year experience of the NDSS from the study.

Our findings indicate that 25 % of key stakeholders perceived the NDSS to be acceptable, 51 % to be flexible, 74 % to be simple, 45 % to be timely, and 61 % to be useful. Overall, these findings contrast with the 2014 self-administered questionnaire that South Africa submitted to the WHO on the implementation of the IHR core competencies in which it scored 100 % in surveillance core capacity [27]. The variation in scores could be explained by the different methodologies used, the differences in study periods, and because the 2014/16 EVD outbreak in West Africa could have influenced the perceptions of key stakeholders in this study.

The NDSS perceptions of key stakeholders in this study differed from the experience of the successful containment of several high profile outbreaks in South Africa since 2008, which included a novel arenavirus, Lujovirus [28]; a major cholera outbreak [29, 30]; influenza pandemic [31]; a Rift Valley Fever outbreak [32]; and a measles outbreak [33]. However, the high media attention during these events could have increased the index of suspicion and sensitivity of the surveillance system, which might not be a true reflection of the South African NDSS. Laboratories, which are not obliged by current legislation to notify diseases, may also provide information during high profile outbreaks which contribute to enhanced surveillance during these periods. Nonetheless the difference in the findings of this study and the 2014 IHR report indicates the need for more objective IHR core capacity assessments.

The study found that only 25 % of the stakeholders perceived the system to be acceptable, which implies that the stakeholders may be unwilling to participate in the system. This score of less than 50 % is similar to the finding of the 2007 study in one South African province, that found that 37 % of general practitioners indicated that they complied with the NDSS (reflection of acceptability) [17]. Comparing acceptability against the German NDSS [34] score of 90 %, the South African NDSS score was significantly lower. The participation of the health care providers is essential to ensure an effective and efficient system. Hence, this attribute needs to be addressed in the reform of the South African NDSS. Only 51 % of key stakeholders perceived the system to be flexible, implying that there are problems with the adaptability of the NDSS to changing circumstances and needs. This finding is similar to that of a qualitative evaluation study on TB surveillance in one district in the Western Cape Province of South Africa that found that although the software used was adaptable, the system did not adjust according to the changing needs [18]. It should be noted that TB has an electronic surveillance system, whereas the surveillance system for all other notifiable diseases is paper-based. Although a comparison with TB surveillance should be made with caution due to these technological differences, the adaptability of the NDSS to the development of new technology appears to lag behind. This suggests the future use of an electronic NDSS system that is responsive to the needs of various stakeholders. In this study, simplicity obtained the highest score of 74 % compared to the other NDSS attributes. This finding is comparable to a study on the Australian NDSS system in 2004 [6] which rated their operations and processes as complex. The introduction of a simple electronic NDSS system in South Africa could potentially address the perceived complexities of the NDSS [35] and also increase efficiency. The timeliness score of 45 % is also lower compared to the findings of a 2010 Ugandan study that found a score of 68–73 % [12]. Although the different methodologies of the two studies may account for the differences, the lower score in our study may imply that many health care providers and public health officials do not take prompt appropriate steps when an increase in specific diseases come to their attention through the NDSS. As prompt action is essential to contain any outbreak, timeliness must be addressed in the future reforms of the South African NDSS.

The usefulness score of 61 % was also lower than the one obtained in the Australian study that found that 94 % of participants reported reading NDSS reports and 85 % reported using the data [16]. This may indicate that there are gaps in South Africa in the utilisation of the NDSS data for outbreak response, or for prevention and control of communicable diseases. This attribute must therefore be addressed in the reform of the South African NDSS.

When considering perceptions in terms of responsibility in the system, those stakeholders involved at an operational level (disease detection and response) scored the usefulness, simplicity and timeliness of the NDSS lower than those in health management. The perceptions of health management may be an overestimation because they may have regarded the NDSS evaluation as a reflection of their own performance. Hence the scores may reflect social desirability bias. In terms of participation in NDSS committees, those participating in the provincial committees, PORT, scored the simplicity and usefulness of the NDSS higher than those in national committees. As is the case with health management, social desirability bias may again have played a role here as provinces are mainly responsible for the NDSS implementation.

Results from the logistic regression analysis showed that the stakeholders in disease detection and national committees, NORT, involved with oversight of the system, as well as those with more years of experience with the system were less likely to perceive the NDSS as acceptable, timely or useful. This may represent a true reflection of the level of functioning of the system as the surveillance officers, epidemiologists, pathologists, communicable disease coordinators and public health officials are involved with the NDSS on a daily basis in an operational and monitoring capacity – the acceptability, timeliness and usefulness of the NDSS have direct application to their daily work. On the other hand, the perceptions of oversight structures may be a reflection of their distance from the operational functioning of the NDSS.

Although the result of the sensitivity analysis in Scenario 2 showed an increase in timeliness to 77 %, this would not alter our conclusion as it still fall below a level that could be regarded as satisfactory for the effective function of the NDSS. However, in Scenario 2, a score of 92 % for simplicity is very good, and implies that no intervention is needed to improve the simplicity of the NDSS.

With regard to factors found to be associated with the perceptions in Scenario 2, the finding that training was associated with simplicity imply that addressing training needs would increase the understanding of the processes and forms used in the system. The finding that participants younger than 35 years found the system more acceptable, should inform additional training and feedback that should be used to revitalise the NDSS. Training and feedback influence the value that stakeholders at the coalface attach to the system and affect their willingness to participate in it. Without the participation of stakeholders at all levels the NDSS cannot fulfil its purpose.

The main limitation of this study was that it was based on the perceptions of individuals and not on the actual records of notifications, which is the focus of another study. Perceptions are influenced by social desirability bias among stakeholders surveyed. Although every attempt was made to include all the relevant key stakeholders at national and provincial levels, some stakeholders may not have been identified. The findings of this study will be validated through further studies on the actual records of notifications. Another limitation was the dearth of national or provincial studies on the South African NDSS to compare the research findings with. The study findings suggest the need for reforms of the South African NDSS, with particular focus on the attributes of acceptability, flexibility, timeliness and usefulness. We recommend the phased introduction of an electronic system that includes the use of mobile telephone technology to address the current perceived weaknesses in the NDSS attributes. This is because the latter has a high penetration in the South African population. In 2015 there have been some encouraging developments with regard to malaria surveillance [36] that could be built upon. The 2014–2016 EVD outbreak and the current Zika virus outbreak provide a window of opportunity that should be used to strengthen the NDSS system. We further recommend additional training and feedback to all stakeholders in the system.

At a global level, the findings of this study indicate a need for objective evaluations in support of annual IHR country submissions to the WHO. We recommend that objective assessments, using the baseline data provided in this study, be conducted every three to 5 years. This should be complemented with comparative studies of notification versus laboratory surveillance to provide a comprehensive evaluation of the NDSS in South Africa.

This study found that the majority of key stakeholders scored the NDSS in South Africa low on the attributes of acceptability, flexibility, and usefulness. Factors found to be associated with key stakeholders perceptions were years of experience, training in the NDSS, age less than 35 years, participation in disease detection and NORT. The overall poor perceptions of NDSS stakeholders on the system attributes are a cause for concern. The study findings should inform the revitalisation and reform of the NDSS in South Africa to address stakeholder concerns. This should be done in consultation and in partnership with the stakeholders.