Setting research priorities for improving pregnancy outcomes associated with ethnic inequalities
The Problem and Why it Matters
Women from ethnic minority groups are at a disproportionately higher risk of adverse maternal and perinatal outcomes. According to 2020 MBRRACE-UK reports, women of Black and Asian ethnic backgrounds, compared to White women, have a much higher risk of death in pregnancy and childbirth. Hospitalisation from COVID-19, rates of pre-eclampsia and gestational diabetes are increased in these communities. Rates of stillbirth, fetal growth restriction and preterm birth are also higher. As a result, multiple groups such as 'Five X More' have emerged to raise awareness of these disparities.
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Reasons as to why these outcomes are disproportionately high are complex. Suggested aetiologies have included language and cultural barriers, socio-economic factors, access to healthcare and the underlying role of structural racism that has been highlighted in recent years. Despite evolving knowledge on these factors, there is sparse research literature highlighting specific mechanisms that lead to adverse outcomes and the interventions needed to address them. There is a need to identify effective interventions that decrease the excess of adverse pregnancy outcomes in ethnic minoritized communities.
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We aim to identify the top unanswered research questions targeting adverse maternal and perinatal outcomes attributable to racial and ethnic inequalities in high-income countries, starting with the UK.
Methodology
We are conducting a Priority Setting Partnership (PSP) adapting the principles of the well-established James Lind Alliance (JLA) procedures. We will employ a series of steps:
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Step 1: Identification and invitation of potential partners
Potential partners and steering group members are contacted to agree on a joint protocol for the project.
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Step 2: Awareness raising
We are raising awareness of our project through multiple platforms including social media and our website. This step will continue to occur throughout the project and the aim is to disseminate our plans and encourage participation and discussion.
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Step 3: Identification of evidence uncertainties
We will identify research gaps via a two-stage process. First, we will ask patients, carers, clinicians and other experts to provide uncertainties in research on the topic of ethnic minority communities in pregnancy, through an online survey. Second, we will do a literature search to identify further uncertainties from systematic reviews, existing guidelines and registers of ongoing research.
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Step 4: Refining questions and uncertainties
The process will produce raw questions and uncertainties which will be scrutinised and categorised into summary questions. These will be checked against evidence to ensure they are not being currently answered by research and not duplicated. The result will be a long list of in-scope questions.
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Step 5: Prioritisation
In this final step, the objective is to prioritise the identified list of summary questions in a two-stage process. First, an interim survey will be launched so patients, carers and clinicians can prioritise the questions. Then the most highly ranked questions will be taken to a workshop where there will be a discussion to rank the final questions. The Steering group will advise on any adaptations to ensure the process is inclusive and accessible