Development of a WHO Core Outcome Set (COS) for maternal and perinatal health for the next epidemic or pandemic: involvement of EFCNI in the process

Maternal and perinatal health are often directly and indirectly affected during outbreaks of infectious diseases. The consequences can be dire. Women and their families face uncertainty and confusion as access to healthcare becomes more difficult. Healthcare providers and policymakers often must delay informed decision-making as reliable data on the state of maternal and perinatal health is lacking in such a precarious situation. The COVID-19 pandemic, for example, hindered attempts to analyse health outcomes as common data were consistently missing. Healthcare systems must become more resilient to prevent similar situations in the future.

The World Health Organization (WHO) has set out to tackle this issue with the aim to develop a Core Outcome Set (COS) for maternal and perinatal health research and surveillance to be used in the case of a disease outbreak. Meant to help those working in the fields of maternal and perinatal health, the WHO plans to lead an iterative four-stage modified Delphi process that will rapidly generate evidence in the face of emerging and ongoing epidemic threats. To that end, the WHO invited 24 international experts to work on the COS. This group of experts is renowned for their technical expertise, but gender balance and equal geographical representation were also considered in the selection process to ensure that many voices and perspectives contribute to the COS. EFCNI is honoured to represent the patient and parent voice.

The COS development follows a comprehensive systematic review of the existing literature, which helped identify previously used pregnancy-related, maternal, and neonatal outcomes. These outcomes were then assessed in two online surveys. Next, a virtual meeting was held on 16-17 January 2024. During the meeting, participants discussed which outcomes should become part of the final set. The group continued their in-depth discussion during a face-to-face meeting at the WHO headquarters in Geneva on 14-15 February with the goal to build a consensus on the set of core outcomes. They will also develop outcome definitions and measurement instruments. Assessing the feasibility was and will also be part of the entire process. The final and official COS is expected for the end of 2024. EFCNI and all other involved partners plan to be actively involved in the dissemination process.