The importance of data
Neglected tropical diseases (NTDs) disfigure and disable, leading to stigmatization and social discrimination. Severe complications and death can result if treatment is not provided early and adequately. This group of diseases largely affects low-income, politically marginalized people living in rural and periurban areas with low visibility and little political voice and with limited access to health care. NTDs are mainly focal and present in remote areas. However, they can be controlled, prevented and possibly eliminated or even eradicated with proven interventions. Strong surveillance systems should be in place in order to understand the burden of NTDs, to describe their geographical distribution and to identify populations at risk in order to best target control interventions in this resource constrained context and take evidence-based decisions.
In May 2013, the Sixty-sixth World Health Assembly adopted resolution WHA66.12 on neglected tropical diseases, urging Member States to “further strengthen the disease surveillance system especially on neglected tropical diseases targeted for eradication” and requesting WHO “to monitor progress in achieving the targets for neglected tropical diseases set in WHO’s roadmap for accelerating work to overcome the global impact of neglected tropical diseases, and to provide support to Member States in their efforts to collect, validate and analyse data from national surveillance systems”.
Moreover, prevention of NTDs is relevant to the achievement of all the Sustainable Development Goals (SDGs) published by the United Nations in September 2015, which share the same motto: “to leave no one behind”. NTDs have the greatest relevance for the health-related SDG 3, notably target 3.3 on ending the epidemics of NTDs by 2030 and target 3.8 on universal health coverage, both of which are included in the strategy to control, elimination or eradicated NTDs. The World Health Organization (WHO) is accountable for monitoring progress towards these SDGs, and an annual NTD-related indicator on the “number of people requiring interventions against neglected tropical diseases” was proposed in 2016.
The challenge of data
NTDs are still very often neglected by national health information systems or by surveillance systems that are too weak to ensure good-quality data collection, flow, validation, use and dissemination. Official data reported by health ministries are, therefore, often incomplete.
Some data related to NTDs may also be collected by other actors (e.g. nongovernmental organizations, researchers) or from other sources (e.g. pharmacovigilance systems), but these data can be largely fragmented and heterogeneous.
There is thus an important need to integrate data on NTDs more efficiently and to build resilient health information systems in endemic countries with capacities for data processing, analysis and sharing. There is also a strong need to create a WHO consolidated data platform in order to build a more complete and comprehensive epidemiological picture of NTDs.
In response to resolution WHA66.12, the WHO Department of Control of Neglected Tropical Diseases has designed and implemented an information system with two overarching goals:
- to strengthen health information systems in endemic countries in order to empower them in taking evidence-based decisions to tailor control interventions.
- to capture, clean, store, consolidate and analyse all available information in order to permit WHO to efficiently monitor advances in control and finally verify the elimination of selected NTDs.
The ultimate beneficiaries of this information system will be the affected neglected populations whose health will improve if the appropriate interventions are implemented based on use of good-quality data.
The WHO Information System to Control and Eliminate NTDs (WISCENTD): an ecosystem
WISCENTD has been conceived as an ecosystem comprising two elements:
- Sub-information systems, which are unique and independent, to capture and disseminate information related to one or more aspects of NTDs, even if that information is not specific to NTDs. These include:
- subsystems that pre-existed the design of WISCENTD; and
- subsystems that were created by the WHO NTD Department to address data gaps, namely:
- the WHO Integrated Data Platform (WIDP); and
- the WHO Integrated Medical Supply System (WIMEDS).
- A Consolidating platform, which aims to integrate data from the sub-information systems and assemble them meaningfully.
The WHO Integrated Data Platform (WIDP)
The main objectives of the WIDP are:
- to strengthen routine surveillance, mainly in endemic countries, by standardizing data collection, easing data flow and building capacity on data use; and
- to facilitate good data reporting from countries to WHO and improve feedback mechanisms.
This platform is intended for use mainly by health ministries of endemic countries, but also by other stakeholders involved in case management of NTDs.
The WHO Integrated Medical Supply System (WIMEDS)
The main objectives of the WIMEDS are:
- to facilitate access to quality-assured diagnostic tests and antiparasitic medicines for diagnosis and treatment of NTDs;
- to promote correct prescribing practices and adherence to treatment;
- to strengthen routine surveillance by collecting epidemiological information related to cases detected and transmission routes; and
- to facilitate the availability of diagnostic kits and medicine forecasts in order to prevent shortages of medicines or the need to destroy expired medicines.
This platform is intended for use by all the actors involved in the procurement of medical supplies for affected populations, from the Ministry of Health to the manufacturer, through WHO and the other partners involved in their storage, transport and administration (such as MSF Logistics).
Other identified sub-systems
Other information systems have been identified for integration in the WISCENTD ecosystem. They include:
- The Global pharmacovigilance system managed by the Upssala Monitoring Centre
- The Event Management System at WHO
- UNdata, an Internet-based data service, which brings UN statistical databases within easy reach of users through a single entry point
- Metatri, a database on the distribution of triatomine bugs developed by the Centro de Estudios Parasitológicos y de Vectores (CEPAVE) of the Universidad Nacional de La Plata
- Medline, a bibliographic database of life sciences and biomedical information
- ProMED (Program for Monitoring Emerging Diseases), an Internet-based reporting system dedicated to rapid global dissemination of information on outbreaks of infectious diseases and acute exposures to toxins that affect human health.
This list is flexible and other relevant data sources can be added in the future.
The WISCENTD-Consolidating Data (WICD)
The main objective of the WICD is:
- to systematically consolidate NTD-related data extracted from the different WISCENTD subsystems and store them in a structure which enables their efficient, integrated and comprehensive use.
The WICD is intended for use by WHO as a powerful tool to cross-reference data from various sources and thus to enable the evidence base for verification of NTD elimination. WHO will make publicly available processed outputs from WISCENTD through different channels (Global Health Observatory, NTD web portal, Weekly Epidemiological Record).