Data Collection and Sharing for Pathogen Surveillance: Making Sense of a Fragmented Global System

Focus and Aims

RAND Europe was commissioned by the Novo Nordisk Foundation to conduct a study of pathogen surveillance initiatives targeting infectious diseases and antimicrobial resistance (AMR). The aim of this study is to identify initiatives and the stakeholders involved, to understand challenges that have been faced and how they have been overcome, to assess the strengths and weaknesses of different approaches, and to understand how insights have been used to inform public health decision making. It also aims to provide an overview of gaps in the pathogen surveillance space and to identify how such gaps might be addressed.

Methods

This study comprises a scoping review of academic journal articles, grey literature and websites about pathogen surveillance initiatives. Ten priority initiatives were selected to be case studies, and additional desk research and interviews (n=5, across three initiatives, plus an additional consultation via email) were conducted to support case study development. Lastly, experts in different aspects of pathogen surveillance were also interviewed (n=8).

Findings

The study identifies 64 different initiatives relating to pathogen surveillance. They most often focus on multiple different pathogens within a single initiative (25 out of 64, or 39%), and those that focus more narrowly most often cover influenza, Covid-19 and AMR (each covered by 7 out of 64 initiatives, or 11%). 16 (25%) of the initiatives are international, covering countries in multiple continents, while the rest are national or regional, focusing on one or more countries within Africa (11, or 17%), Asia (12, or 19%), Europe (7, or 11%), North and South America (14, or 22%), and Oceania (4, or 6%).

The initiatives include a variety of stakeholders, including national and regional Centres for Disease Control (CDCs), the World Health Organization (WHO), national governments and other public sector stakeholders, and large charities, foundations and other third sector organisations (e.g. the Bill & Melinda Gates Foundation and Wellcome).

By looking across these initiatives and gathering expert insights, this study identifies a number of challenges and gaps in pathogen surveillance:

• Capacity constraints and logistical challenges, particularly in low-resource settings, limit the amount, type and quality of data available for surveillance. Healthcare and clinical data is also limited by the lack of diagnostics and electronic health records in some regions as well as limited reporting of relevant data to surveillance systems. There is a need to build distributed and sustainable capacity for surveillance, particularly in genomic surveillance, and to support the use of diagnostics and electronic health records across settings.
• The ability to conduct integrated and real-time surveillance is critical to public health decision making, but is currently lacking. Insufficient metadata and varying case definitions, methodologies and data formats make it difficult to link and analyse data. Additionally, a lack of interoperability contributes to siloed data streams.
• Several factors complicate data sharing. For instance, logistical challenges such as a lack of interoperability between data platforms can make it difficult to share data between relevant stakeholders, and data-related regulations (e.g. GDPR) also need to be considered prior to sharing. Internationally, political pressure can result in a reluctance to share data or under-reporting of cases, due to concerns over reputation and tourism revenue. There are additional sensitivities when transporting physical samples and genetic data across borders.
• Wastewater surveillance provides a promising way to understand population-level health at a lower cost, and avoids some of the challenges involved in collecting and sharing individual-level data. Similarly, genomic surveillance is key, particularly in relation to AMR, and is increasingly being used. However, data science is needed to understand how new and emerging data sources, such as wastewater surveillance and genomic data, should be incorporated into surveillance activities and what actions should be triggered by signals in different data types.
• The pathogen surveillance space is highly fragmented, with poor coordination between efforts, varying approaches and methodologies, and a lack of clarity in how data flows. There is a need to bring stakeholders together to agree on priorities and approaches.

To address these challenges and gaps, and to help improve how insights from pathogen surveillance are used to inform public health activities, several broad categories of action are needed:

• While direct funding, operational support and supplies can help address capacity constraints, more sustainable solutions are needed that go beyond grant cycles and short-term funding mechanisms. Hub and spoke models have been used to build capacity, and can help improve harmonisation, while also allowing a degree of autonomy and local adaptation. Long-term support and training are also needed to build capacity, particularly in low- and middle-income countries (LMICs) and in relation to genomic surveillance. Technological solutions that allow for data collection, analysis and sharing in low-resource settings are also helpful.
• To improve integration between data streams, more harmonised approaches and methods to collect and record data are needed, along with technological solutions to increase interoperability and reduce siloed data.
• There is potential to use artificial intelligence (AI) to help analyse integrated data and to use data science techniques to clarify which data streams are important in integrated surveillance. This may highlight potential for efficiencies (e.g. integrating less resource-intensive techniques such as wastewater surveillance), and refine priorities around integrated surveillance.
• Convening is an important role in the pathogen surveillance space, to bring together experts to agree on priorities and common approaches, improve interoperability and increase harmonisation between the many different stakeholders and initiatives involved in pathogen surveillance.
• Common approaches for pathogen surveillance would need to account for differing capacities across contexts and locations, and would need to balance being simple enough to implement across settings, while also being sophisticated enough to capture granular and complex information. Step-wise approaches to building capacity in a coordinated way, allowing for interoperability and harmonisation, may be helpful in achieving this balance.

Conclusion

To improve surveillance systems for infectious diseases and AMR, there is a need to address long-standing capacity constraints. At the same time, there is also a need to improve the ability to conduct real-time and integrated surveillance, including through advances in genomic surveillance, wastewater surveillance, and AI and data science. In addition, more coordination is needed to harmonise approaches, agree on priorities and encourage collaboration between the many different actors involved in pathogen surveillance.

Strengthening capacity to conduct pathogen surveillance and improving the ability to detect and respond to threats is critical in improving public health decision making and population-level health. Long-term funding is needed, along with coordination to ensure that current and future surveillance efforts improve preparedness.