World Economic Forum blog on IDDO

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First published on the World Economic Forum Agenda - Shaping the Future of Health and Healthcare blog on 15 March 2023

Poverty and infectious disease come together far too often — the solution could be data-driven

• Every year, malaria, HIV and tuberculosis kill over 2.8 million people — and this burden is felt disproportionally by less wealthy countries.
• Data is a powerful tool to research answers to the infectious diseases problem, but can be piecemeal or patchy.
• To address this challenge, the Infectious Diseases Data Observatory collates data on infectious diseases, making it interoperable and available to researchers worldwide.

Infectious diseases are a problem everywhere — but more so in the world’s poorer countries.

Every year, malaria, HIV and tuberculosis (TB) kill over 2.8 million people, and more than 1.7 billion people require treatment for at least one neglected tropical disease (NTD). In addition, epidemic-prone infectious diseases such as COVID-19 and Ebola can claim thousands to millions of lives before control and preventive measures can be effective.

Low-income and middle-income countries (LMICs) bear a disproportionately high burden of these infectious diseases, when compared with wealthier countries. This is due to a combination of factors, including poor sanitation, limited access to healthcare, inadequate vaccination coverage, presence of specific vectors, poverty and malnutrition.

Infectious disease: a global-scale challenge

While progress has been made, the COVID-19 pandemic saw health services everywhere stretched to capacity, affecting the delivery of infectious diseases control programmes. Infectious diseases can have dire consequences for at-risk populations in LMICs, where health inequity is compounded by poverty and limited access to healthcare resources.

The World Health Organization (WHO) has identified 20 different conditions as Neglected Tropical Diseases. But despite causing devastating health, social and economic consequences to more than one in eight of us worldwide, to date, there has been little commercial incentive to develop new treatments for NTDs.

Treatment options are often limited in terms of the number of therapeutics and are not adapted to target populations, like young children who often need different formulations. Many treatments were developed decades ago and can also become less effective over time due to the emergence of antimicrobial resistance. The WHO has declared antimicrobial resistance one of the top 10 global public health threats facing humanity.

In resource-limited settings, the prevalence of resistance in most diseases is poorly documented, and there is inadequate capacity to measure the prevalence of antimicrobial resistance affecting LMICs or to detect emerging infections.

Crucially, what is needed is more information to understand the distribution of infectious diseases and to optimise the use of current medicines. However, in the field of poverty-related diseases, scientific data are often scarce, come in many different formats, are not always stored digitally and are scattered across institutions around the world.

Repositories of viral genomic sequences and associated data are proliferating globally. Efficient access to these data repositories, while respecting relevant policies, laws and governance protocols, is challenging. Moving this data to a central repository — often the default data storage option — can be cumbersome and politically difficult. Different models of access via networked data repositories are required. This would mean data can be queried by trusted users and a global set of insights developed and rapidly applied toward public health responses and innovation in vaccines, diagnostics and therapeutics.

The World Economic Forum’s Pathogenic Genomic Surveillance initiative aims to evaluate the feasibility of federating distributed repositories of viral sequence data and other associated data from viral sequencing efforts in low-income and middle-income countries. It also envisions trial frameworks for public-private collaboration on data access to accelerate the development of diagnostics, vaccines and therapeutics.

There are key initiatives globally which leverage the power of data to help fight infectious diseases, and the Infectious Diseases Data Observatory (IDDO) is at the forefront.

Sharing data to tackle infectious diseases

The WorldWide Antimalarial Resistance Network (WWARN) creates a global database to track and understand resistance in malaria. IDDO evolved from WWARN, incorporating its pioneering work. IDDO focuses on a wide range of infectious diseases. Currently, it works across 16 research areas, including: COVID-19, malaria, visceral leishmaniasis, medicine quality, antimicrobial resistance, Chagas disease, Ebola, schistosomiasis, soil-transmitted helminthiases, lymphatic filariasis and HIV, with more already in development or being scoped for feasibility.

IDDO works with researchers in disease-affected communities to identify and collate anonymised individual patient data (IPD) that can be stored irrespective of the formats it is collected in. Informed by a global committee of subject matter experts, IDDO then standardises IPD from multiple clinical trials or epidemiological studies so that it can then be analysed as a single dataset, increasing the statistical power needed to answer key research questions. By using globally-recognised standards, IDDO ensures the optimal use of data contributed from multiple sources — now and for years to come.

Using IPD is key because it gives researchers a level of granularity about what happened to particular patients and allows for the study of subgroups such as malnourished children, pregnant women and patients with co-morbidities, who are too often underrepresented in individual studies.

Curation enables interoperability

IDDO is building a partnership with the Indian Council of Medical Research (ICMR) both in and beyond data and skill-sharing to exchange and share ideas on emerging infections and three vector-borne diseases in the elimination phase: malaria, visceral leishmaniasis and lymphatic filariasis.

Among many others, it collaborates with the National Institute of Malaria Research (NIMR) in New Delhi, the Vector Control Research Centre (VCRC) in Puducherry, the Rajendra Memorial Research Institute of Medical Sciences (RMRIMS) in Patna, the University Cheikh Anta Diop in Dakar, the University of Cape Town, Menzies School of Health Research, Wellcome Trust, Mahidol Oxford Research Unit (MORU) in Thailand and the Oxford University Clinical Research Unit in Vietnam.

IDDO has over 2,000 global research contributors, and its repository now hosts data from more than one million patient infections. The data is available for reuse by the research community. WWARN’s meta-analysis has informed the updated WHO guidelines for treatment of uncomplicated malaria in the first trimester of pregnancy.

Working together, achieving more

The United Nations Sustainable Development Goals (SDGs) call for an end to epidemics of the deadliest Infectious diseases by 2030 — this means work must be done in LMICs.

The need of the hour is to assemble data for use by the public health research and humanitarian communities, generating the scientific evidence that accelerates advances in safe and improved treatments for patients.