Cover: Data collection and sharing for pathogen surveillance

Data collection and sharing for pathogen surveillance

Making sense of a fragmented global system

Published Nov 15, 2023

by Sarah Parkinson, Jessica Dawney, Avery Adams, Ben Senator

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Research Questions

  1. What initiatives exist to collect and share data relevant to pathogen surveillance for infectious diseases and AMR?
  2. What are the challenges these initiatives have encountered in relation to data collection and sharing, and how were they overcome?
  3. What stakeholders are involved in these initiatives?
  4. What are the strengths and weaknesses of these initiatives?
  5. How has pathogen surveillance data been used to support national and/or international public health activities?

RAND Europe was commissioned by the Novo Nordisk Foundation to conduct a study on pathogen surveillance and current initiatives. The study aims to provide an overview of the pathogen surveillance space internationally and the stakeholders involved, as well as to understand the strengths and weaknesses of different initiatives, the challenges of pathogen surveillance and how they have been addressed, and how data has been used to inform public health decision making. To do this, a scoping review of pathogen surveillance initiatives was conducted, and ten case studies were developed and selected for further review following a workshop attended by the Novo Nordisk Foundation and RAND Europe study team. Interviews were conducted with individuals involved in pathogen surveillance initiatives to gather additional information to develop case studies, and expert interviews addressed gaps in the pathogen surveillance space and models that would be helpful in filling these gaps.

Key Findings

  • The pathogen surveillance space is highly fragmented.
  • Capacity constraints and logistical challenges, particularly in low-resource settings, limit the availability of data for surveillance.
  • The ability to conduct integrated and real-time surveillance is critical to public health decision making.

Recommendations

  • There is a need to build distributed and sustainable capacity.
  • More harmonised approaches and methods are needed to improve integration between data streams and reduce siloed data.
  • There is potential to use artificial intelligence (AI) and data science techniques.
  • Common approaches for pathogen surveillance would need to balance being simple enough to implement and having the sophistication to capture granular, complex information.

Research conducted by

The research described in this report was commissioned by the Novo Nordisk Foundation and conducted by RAND Europe.

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