Behind the data: Establishing the Network for Surveillance for Pneumococcal Diseases in the East African Region, netSPEAR

Abstract

In a region with high rates of mortality among children aged <5 years, the underfunded health care systems of sub-Saharan Africa have few resources available to perform surveillance activities that can help determine the causes of morbidity and mortality in the region. At present, there are few examples of attempts to promote public health care surveillance that might inform current debates about how to expand and improve surveillance, particularly for bacterial diseases. Driven by this gap in knowledge, we attempted to explore the successes and failures of the Network for Surveillance of Pneumococcal Disease in the East African Region and to share the experiences of what are essentially non research public-sector hospitals in East Africa, with the hopes that surveillance systems for other diseases, especially those that require complex diagnostic support, may be informed by these experiences. The state of services essential for surveillance and the measures taken to overcome any shortcomings are described, as is the progress made in improving clinical diagnosis, laboratory processing, and data management. For surveillance to play a role in public health care, ministries of health and associated institutions must own and push forward the surveillance agenda, with support from global partners, and take advantage of the developments that have been achieved within the institutions.

INTRODUCTION

Currently, vaccines on the schedule of the Expanded Programme of Immunizations are relatively inexpensive and widely available, which has contributed to decreases in mortality among children aged <5 years in Africa. Many of the deaths that occur during infancy and childhood are caused by diseases that might be prevented by newer vaccines, including those against malaria, pneumonia, diarrhea, and meningitis. Vaccines against Haemophilus influenzae type b (Hib) and Streptococcus pneumoniae—the major bacterial pathogens responsible for pneumonia and meningitis—although available and highly cost-effective, remain relatively expensive. Introduction of these vaccines is hindered by concerns about affordability, despite funding assistance from the GAVI Alliance. Previously, there were few epidemiological data to offset concerns about costs. Of the 7 African countries that introduced the Hib vaccine in 1999–2002, only The Gambia had a good estimate of Hib incidence before vaccine introduction [1].

In 2001, recognizing this lack of data, the World Health Organization (WHO) started the Hib–Paediatric Bacterial Meningitis (Hib-PBM) Surveillance Network [2], aimed at identifying Hib in 27 African countries. The sites are usually located in a single, major, national hospital, and the main aim of the network is to monitor trends in pediatric meningitis cases with culture results positive for Hib. In 2003, with possible access to pneumococcal conjugate vaccines and in response to a call for proposals from the Pneumococcal Vaccines Accelerated Development and Introduction Plan (Pneumo- ADIP), the Network for Surveillance of Pneumococcal Disease in the East African Region (netSPEAR) was founded to strengthen the Hib-PBM Surveillance Network initiative in East Africa, and it focused on Kenya, Tanzania, Ethiopia, and Uganda, with the overall aims listed below. The surveillance results are reported in detail elsewhere in this supplement [3]. The present article aims to share our experiences in attempting to establish the surveillance network (aims 2 and 5) and to draw lessons that may be useful to others who are considering a similar effort. The context of the surveillance, the network, and the activities undertaken in establishing and managing the surveillance on an ongoing basis are described in brief.

OVERALL AIMS OF NETSPEAR

1. To provide a focal point within the East African region for collating and sharing available data on S. pneumoniae and H. influenzae infections in children

2. To expand the capacity for effective, routine surveillance by developing clinical case definitions that trigger sample collection and laboratory procedures that result in bacterial isolation within government-funded hospitals

3. To regularly update available data and disseminate findings to network regional partners, including participating surveillance sites, ministries of health, multilateral organizations, and donors who provide support for vaccines in the Expanded Program on Immunizations

4. To apply clinical, epidemiological, and microbiological findings from research in the region to extrapolate surveillance findings to regional incidence estimates of pneumococcal disease burden

5. Through all the aims above, to contribute to the development of surveillance capacity in the public health care systems in the region

THE CONTEXT OF MENINGITIS AND PNEUMONIA SURVEILLANCE

Traditionally, surveillance in low-income settings has been concerned almost exclusively with diseases for which there are long established vaccines (e.g., measles and polio). More recently, surveillance has encompassed epidemic-prone diseases, such as cholera, meningococcal disease, and, most recently, severe acute respiratory syndrome and avian influenza. Added to these are diseases of “public health significance”—namely, those that attract funds from global initiatives, such as HIV infection, tuberculosis, and malaria. The result has been multiple, separate surveillance mechanisms in many countries, although, increasingly, there have been attempts at “integrated disease surveillance” [4].

In general, traditional surveillance mechanisms rely on either a highly suggestive clinical presentation, such as acute flaccid paralysis in polio, or a major increase in the number of cases to trigger the surveillance activity. Laboratory confirmation can then take the form of late testing for serological markers in affected individuals or testing of individuals who present after an epidemic alert. For other diseases—notably, tuberculosis, malaria, and HIV infection—vertically funded disease-control programs produce data aided by the fact that the disease is chronic (e.g., HIV infection and tuberculosis) or can be identified by a simple, widely available test (e.g., malaria).

In contrast, Hib and S. pneumoniae have no epidemic trigger and cause a high proportion of the cases of a relatively uncommon disease (meningitis) and a moderate proportion of the cases of a very common disease (pneumonia). In both instances, laboratory confirmation is difficult. For pneumonia, confirmation of the cause is often not possible, because blood culture is very insensitive and no other readily available diagnostic test for children exists. In developed countries, identification of serious bacterial diseases is now taken for granted through routine health care system functions that are aimed primarily at improving diagnostic services to enhance clinical care. Surveillance relies simply on linking these routine functions together and aggregating data by geographical region and time, with the coordinating role often the responsibility of longstanding institutions, such as national public health laboratories.

The fact that this surveillance relies on “basic,” high-quality, routine procedures results in a widespread failure to appreciate the challenges posed by surveillance of Hib and S. Pneumoniae in low-income settings. Such surveillance relies on well-functioning health care systems (figure 1). Appropriate assessment, diagnosis, investigation, specimen handling, laboratory processing, and data handling are also required. All these activities need to occur at whatever place a patient presents and need to be operational 24 h per day, every day of the year. This type of integrated health care system functioning does not mesh easily with traditional models of “vertical” surveillance.

Figure 1.

Flow of specimens and data in a functioning health system

Under the reasoning that any new surveillance activity should contribute to longer-term capacity development within the health care system, a fundamental characteristic of netSPEAR at its inception was that it would not operate as a research project. Instead, we hoped that, by engaging with ministries of health, managers, clinicians, and laboratory staff to promote good practice and by ensuring supplies of essential laboratory resources, hospitals would be able to generate data of clinical and public health importance. Here we describe and share some of our experiences working with hospitals that provide publicsector services in the East African region. We hope that our experiences will encourage discussion on how to best develop surveillance capacity in general and for bacterial diseases in particular.

THE START OF NETSPEAR

In August 2003, netSPEAR began its activities, with the coordinating offices set up and housed at the Kenya Medical Research Institute (KEMRI)/Wellcome Trust Research Programme, Nairobi, Kenya. The administrative structure included a network manager, an administrator, a data manager, and a volunteer steering committee.

In November 2003, a foundation workshop was held. Participants included clinicians, laboratory personnel, and public health specialists from the participating countries' ministries of health, the donor community, academic institutions, WHO African Regional Office, public and private health care institutions, and representatives from the WHO Hib-PBM Surveillance Network hospital sites in Uganda (3 sites) and Kenya, Tanzania, and Ethiopia (1 site each). They met to develop strategies for establishing or strengthening surveillance in public institutions. Standard operating procedures were discussed and approved by working groups that covered the following areas: good clinical practice for identifying and investigating possible childhood meningitis and severe or very severe pneumonia, performance of lumbar puncture, performance of blood culture, transport of CSF and blood specimens, laboratory processing of CSF and blood specimens, and transportation of isolates from the sites to the coordinating laboratory. The clinical standard operating procedures were based on existing WHO guidelines but were simplified and took into account local research and data and local practice. These standard operating procedures are available at netSPEAR's Web site [5].

SURVEILLANCE SITE SELECTION AND SUPPORT

Additional candidate sites that were not part of the Hib-PBM Surveillance Network were identified, and these were assessed by netSPEAR with the help of the respective ministries of health. Site selection was based on (1) the number of pediatric admissions annually (aim, approximately 5000 admissions annually), (2) availability of pediatricians, nurses, laboratory personnel, basic consumables, and equipment, (3) experience in CSF analysis, and (4) the apparent commitment of pediatricians, laboratory technicians, and hospital management to improving practices to facilitate surveillance. Geographic and demographic considerations, to promote regional representation, were also taken into account. Because Uganda, under the Hib-PBM Surveillance Network, had already expanded to 3 sites, there was a particular emphasis on improving the ability to isolate pneumococci there and on expansion first to Kenya and then to Tanzania. Expansion initially prioritized Kenya, for simple logistical reasons. Several visits were made to Ethiopia in the first 2 years of netSPEAR's work. However, netSPEAR's limited resources and the great difficulties that it encountered in engaging the appropriate authorities and in facilitating any sort of reliable procurement of supplies precluded any attempts to expand beyond the 1 site in Ethiopia. Therefore, the rest of this report focuses on experiences in Kenya, Uganda, and Tanzania.

ESTABLISHING THE SURVEILLANCE SYSTEM

Each surveillance site identified health care workers and laboratory personnel to act as focal points for netSPEAR activities (all unpaid). Initial on-site training in case detection and the investigation and confirmation of pediatric bacterial meningitis cases in line with the standard operating procedures of the Hib-PBM Surveillance Network and netSPEAR, as well as instruction on the basis of these procedures in optimizing patient care, was provided to as many relevant hospital staff as possible. Clinical and laboratory supplies that were found to be needed were provided by netSPEAR, the WHO, or the country's respective ministry of health. A computer and data management tool for collection of the required clinical and laboratory information were provided to sites where required. Existing Hib-PBM Surveillance Network sites continued to use a purpose designed database from Epi Info, version 2002 (Centers for Disease Control and Prevention), whereas the more recently established netSPEAR surveillance sites used an alternative, custom-made, electronic laboratory register and database. All sites were provided printed and electronic copies of the standard operating procedures; the printed version was in booklet and wall-chart or poster formats. A summary history of sites involved in the network is provided in table 1, and their geographic locations are shown in figure 2. Note that that, in June 2005, netSPEAR provided additional support to 3 sites (Kenyatta National Hospital in Kenya and Mulago National Referral Hospital and St. Mary's Hospital Lacor in Uganda) to perform blood cultures for children with severe pneumonia, with the aim of enhancing the ability to identify pneumococcal disease.

Table 1.

Hib-PBM/netSPEAR surveillance sites by year of recruitment and function status

Country	Number of Sites	Year Joined Network (Year left)	Type of Hospital	Investigations supported
Ethiopia	1	2001	Capital city, General	CSF
Kenya	7	Aug 04	Provincial Town, Teaching & Referral	CSF
		Aug 04	Provincial Town, Provincial General	CSF
		2001	Capital city, National Referral	CSF & BC
		May 04	Provincial Town, Provincial General	CSF
		Aug 03	Rural, District hospital supported by the Wellcome Trust	CSF & BC
		May 04 (June 05)	Provincial Town, District	CSF
		May 04 (April 07)	Provincial Town, Provincial General	CSF
Tanzania	2	Oct 04	Urban, National Referral	CSF
		Nov 04	Rural, District Mission	CSF & BC
Uganda	4	Jan 05	Provincial Town, General	CSF
		2003	Rural, Mission	CSF & BC
		2003	Provincial Town, Teaching & Referral	CSF
		2001	Capital city, National Referral	CSF & BC

Figure 2.

netSPEAR surveillance sites, map showing the location (the site in Ethiopia has not been included in the interests of clarity)

These sites were selected for support on the basis of patient load and good performance in obtaining the target number of CSF samples for meningitis surveillance. In June 2007, 1 hospital in Tanzania (Hospitali Teule, Muheza) began to receive support for continuation of blood culture surveillance that had been initiated by a specific research project that had ended. The site in Kilifi, Kenya, supported by the KEMRI/Wellcome Trust Research Programme, has contributed blood culture data since the inception of netSPEAR.

COLLATION OF EXPERIENCES

To record and discuss the experiences of netSPEAR, network partners were asked to nominate 2 participants (from Kenya, T.N. and D.M.; from Tanzania, B.A. and H.M.; and from Uganda, A.K. and D.N.), and they were joined by 2 netSPEAR staff members, the network manager (M.W.), the data manager/laboratory scientist (S.M.), and a facilitator (M.E.) who had been involved in obtaining funding for netSPEAR. The 6 participants from the 3 countries represented 5 of the 13 participating netSPEAR surveillance sites, comprising 4 pediatricians, a senior laboratory scientist, and a national Expanded Programme of Immunizations surveillance officer. The participants were briefed on the purpose of the workshop 1 month in advance and were asked to seek the views and experiences of additional network partners before attending the workshop. Nine final participants attended a 5-day structured workshop held in December 2007 to reflect on netSPEAR's progress, problems, and successes and to draft this report. Drafts were shared with interested groups and ministries of health for their review and feedback.

RESULTS

Optimal surveillance occurs if all cases are correctly identified, appropriate samples are collected and carefully processed by the laboratory, and the data are properly managed. The general status of the services pertinent to the needs of surveillance was poor at most of the hospitals before their involvement in the Hib-PBM Surveillance Network and netSPEAR; the problems are outlined in figure 3A. It is noteworthy that the majority of hospitals had not isolated S. pneumoniae for years and that, at sites not already sensitized through engagement with the WHO and/or the Hib-PBM Surveillance Network, almost no lumbar punctures were performed. With regard to the isolation of S. pneumoniae, all sites other than the research-supported site (Kilifi) had been using human blood (known to inhibit the growth of pneumococci) in the preparation of blood agar. With regard to lumbar puncture, the criteria for ordering lumbar punctures were unclear, and clinical apathy linked to a lack of trust in laboratory services resulted in very few eligible sick children being investigated appropriately.

Figure 3A.

Summary of major problems and the status of services at sites before arrival of the Network for Surveillance of Pneumococcal Disease in the East African Region (netSPEAR). B, Achievements of netSPEAR at the surveillance sites. BC, blood culture; IT, information technology; LP, lumbar puncture; SOP, standard operating procedure

Some facilities were found to be maintaining good clinical and/or laboratory practices before their involvement in the Hib-PBM Surveillance Network and netSPEAR; this reflected active, local clinical or laboratory leadership and, on occasion, greater resource support from faith-based providers. In the majority of settings, however, the long-term nature of problems were thought to contribute to a vicious cycle, extending to central parts of the ministries of health, that undermined the credibility of, the demand for, and, consequently, the support for this form of public health information (figure 4). Most hospitals, with the exception of that in Kilifi, were and remain unable to support blood culture as a primary investigation for very sick children. Before netSPEAR support, this investigation was offered at a few sites, but it was very rarely performed in the routine investigation of severe pneumonia, being reserved for children who were referred with or who experienced during an inpatient stay an apparent treatment failure.

Therefore, as well as having to address the physical and logistical resource gaps, netSPEAR efforts had to be directed at breaking the vicious cycle of health care systems (figure 4) through attempts to improve the quality of care and laboratory processes. Ongoing support and supervision; efforts to improve communications, including peer-to-peer contact; efforts to increase the profile of surveillance; and fostering of the demand for data all contributed. The routine activities of netSPEAR are as follows.

Routine activities of netSPEAR

1. Annual, focused, technical support supervisory visits are made to all participating sites. During these visits, on-site training/resensitization and addressing of surveillance issues was done. These visits ensured that a standardized process of case identification, specimen collection, analysis, and reporting was followed. The supervisory visits were done in collaboration with the Ministry of Health/Expanded Programme of Immunizations, World Health Organization, Central Public Health Laboratory and Ministry of Health Integrated Disease Surveillance and Response committee. In addition to the central support supervisory visits, peer-review visits were also conducted to address the same objective.

2. Regular intracountry review meetings were conducted, which provided information on the successes, challenges faced, and action points to be taken care of by site and as a region.

3. Regular annual dissemination meetings for all the participating sites were held, to share experiences and to plan for improvement of the surveillance system.

4. Country-specific and regional annual reports were prepared that focused on the achievements, the challenges, and recommendations for subsequent years.

5. netSPEAR-prepared regular newsletters were shared with all participating sites and other stakeholders involved in surveillance activities.

6. A regular, external, quality assurance program was run for the network sites.

A summary of major problem areas common to many but not necessarily all settings is provided in figure 3A, many of which are ongoing. An outline of where progress is being made is provided in figure 3B.

Figure 3B.

Summary of major problems and the status of services at sites before arrival of the Network for Surveillance of Pneumococcal Disease in the East African Region (netSPEAR). B, Achievements of netSPEAR at the surveillance sites. BC, blood culture; IT, information technology; LP, lumbar puncture; SOP, standard operating procedure

Among the continued difficulties, the absence of an information technology (computer) culture means that many sites, even after several years, have not engaged with the information technology solutions as an aid to their work. Instead, they view them as an additional activity for someone else's purpose. Unfortunately, we think there is still little conviction at the sites that their locally generated surveillance data are valuable to the hospital. This may be because the numbers of isolates are still small. However, site-specific or even country-specific data are rarely displayed or reviewed locally.

There have also been some unfortunate adverse effects resulting from the introduction of the Hib-PBM Surveillance Network and netSPEAR. These include some procedures being branded as “program” or “project” procedures and thus being associated with specific people, in both clinical and laboratory areas, rather than being part of the normal functions of a hospital team. The idea that improved services and public health benefits are worthwhile ends in their own right is undermined by the widespread practice of allowances being paid for specific “extra” activities or for attending “training” by governmental and nongovernmental organizations. A problem that is perhaps common to any attempt to change systems or working practices is the frequent rotation or transfer of staff. Unfortunately, because many medical and laboratory training schools or alternative working environments have the original problems of the sentinel sites, new recruits rarely have the experience of practicing in a high-quality setting. Even when they have the appropriate knowledge at arrival to their stations, they begin to learn good clinical or laboratory practice only at the surveillance site.

DISCUSSION

Has the netSPEAR initiative been successful? The resulting data can be judged from another article in this supplement [3]. The limited capacity of netSPEAR meant that it was unable to devote the time and resources needed to engage effectively with new Ethiopian sites without jeopardizing the work elsewhere. In Tanzania, there is continuing difficulty in engaging, in a coordinated fashion, the attention of senior personnel from government or even the WHO. This situation may reflect the physical location of netSPEAR in Kenya and the reluctance of Tanzania to adopt the Hib vaccine before the recent attention paid to Tanzania by the Hib Initiative.

Within the network, Ugandan partners have become more autonomous, with a devolved budget and the capacity to purchase resources and organize supervision locally, albeit with netSPEAR's support. The network has continued to act as a facilitator, an aid to maintaining quality, a supplier of resources unavailable in Uganda, and a partner in synthesizing and sharing data. This evolution appears to have resulted from effective local leadership and greater engagement with the issues of surveillance at senior levels in the Ugandan Ministry of Health and at the WHO. In Kenya, an advisory group has been formed, comprising representatives from the Ministry of Health and surveillance sites. This group works to increase the profile of bacterial disease surveillance within the Ministry of Health and within the wider field of integrated disease surveillance. They also make strategic and operational decisions, such as the recent decision to drop one site from the network because of consistently poor performance. The network may have had an influence on Kenya's recent application for support for the pneumococcal vaccine.

One interesting observation during the 4-year period of enhanced network activity in East Africa is that our regional data have become more well known internationally. However, it has remained hard to sustain any interest in the surveillance among international organizations other than PneumoADIP and the WHO. Although some individuals at UNICEF, for example, have given technical support, they and bilateral health care donors, such as the United Kingdom's Department for International

Development and other European or US agencies, have rarely contributed financially to this type of activity and have not demonstrated much demand for data. This is in stark contrast to the financial support provided for higher-profile diseases, such as malaria, tuberculosis, and HIV infection.

Has netSPEAR's approach to surveillance through strengthening of health care systems rather than through establishing a parallel process of research been successful? Compared with a well-resourced research environment, exemplified by Kilifi, the numbers of investigations and isolation rates remain relatively low at other sites. Greater concentration of resources at fewer sites, including specific support for additional clinical and laboratory personnel, might have been more efficient in terms of cost per isolate available to the network. However, we believe there have been benefits from the approach taken that are hard to quantify. The approach has brought policy makers, service providers, and researchers together, and each party has learned from this collaboration. We would argue that there is perhaps a greater sense of ownership of the data at facility and national levels (and thus the potential for sustainability of the surveillance work) than there might have been with a “research” approach, although there is still progress to be made in this area. Within the hospitals, the quality of clinical and laboratory services have become subjects of local concern and action. This, in turn, has stimulated a wider debate, in some places reaching the national level, about the poor quality of service and experience provided by the facilities not engaged in surveillance, many of which, however, are involved in training clinical or laboratory personnel. However, netSPEAR's approach has not always worked. For example, 2 institutions in Kenya were dropped from the network after consistently poor performance. It is worrisome that both of these institutions house training schools for laboratory staff and receive newly qualified doctors to gain their first year of experience. Why do institutions succeed or fail? Although clearly an incomplete explanation, it appears that the success of individual institutions is often the result of the efforts of individuals, not the commitment of the institution as a whole.

With respect to the actual data generated, it is important to note that there remains some variation in quality, which partly reflects the sites' different starting points and also the presence of additional partners or prior experience with research, in addition to their total capacity. The data, however, arise from a variety of settings and levels of care—not just from national hospitals. There are still improvements to be made, and the value of the data will grow with further improvements and as the quantity of data increases with time. In support of this network, chains of supply have been established, the means of shipping isolates from remote rural settings to a coordinating laboratory across international borders are in place, internal and external quality assurance programs have been instituted, communication across and within the network has improved, and training programs have been established.

Because HIV infection is associated with immune deficiency, it increases the risk of contracting pneumococcal disease. In the East African region, the prevalence of HIV infection is high, and the impact of HIV is that it alters the epidemiology of S. pneumoniae and H. influenzae disease. Various studies have shown that pneumococcal and Hib conjugate vaccines are safe and efficacious when used for children infected with HIV. But even with these data, it is still necessary for countries to improve their surveillance techniques such that baseline data can be collected to obtain estimates and to measure the impact of vaccine introduction, especially in areas with a high prevalence of HIV infection.

To capitalize on these developments and for surveillance to work and to play its role in public health, the various ministries of health and allied institutions should increasingly drive and own the surveillance activities. Approaches, therefore,must seek to improve local capacity in the long run. Such capacity development may need to include the private sector if resources are to become available for purchase locally, instead of reliance on international supply. More strategic thinking is also required for surveillance as a whole. Often, hospitals have to respond to requests from multiple projects for data on disease, each with its own data collection process. Such duplication of work creates an additional burden for the limited number of health care workers. Although general strengthening of health care systems might overcome this problem, an alternative but perhaps short-term approach might be to establish sites that specialize in surveillance for their specific countries.

It is important to note that the range and extent of the experiences of the Hib-PBM Surveillance Network and netSPEAR presented here are, of course, limited. We did not have representation from a well-performing site in a very remote rural location (site 2 in Uganda; table 1) or representation from the 2 “failed” sites. However, we believe that we have captured many of the challenges encountered while working in this area, where budgets and international interest have been limited. Despite the challenges, a regional surveillance network has been established. If it is to continue, improve, and evolve its ownership, functions, linkages, and organizational architecture, it will require continued thought and support

Figure 3.

Vicious cycle in our health systems