Setting research priorities to improve pregnancy problems associated with ethnic inequalities in the UK
Your Voice Matters
It is our belief that women who are affected during their pregnancy should have a say in determining what research needs to be prioritised.
The purpose of our Priority Setting Partnership is to integrate the views from Patients and the Public, existing research articles and expert healthcare professionals to produce a list of questions that need to be addressed by future research.
An outline of our project is included below.
The Problem and Why it Matters
What does research tell us? What is our aim?
Women from ethnic minority groups are at a higher risk of problems during pregnancy and childbirth. According to a confidential enquiry into the causes of death in moms and their babies in 2020, women of Black and Asian ethnic backgrounds, compared to White women, have a much higher risk of death in pregnancy and childbirth. These communities have an increased number of hospitalisation from COVID-19, pre-eclampsia (placental blood flow is insufficient) and gestational diabetes (high blood sugar in pregnancy). There are also higher rates of baby deaths, premature births and decreased growth potential while in the womb. As a result, multiple groups such as 'Five X More' have emerged to raise awareness of the actions which are needed to improve these outcomes.
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Reasons as to why this happens may be complex. Research article highlight the influence of 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 little research highlighting specific mechanisms that lead to these problems and the interventions needed to address them. There is a need to identify effective interventions that decrease the problems arising during pregnancy in ethnic minoritized communities.
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We aim to identify the top unanswered research questions targeting adverse outcomes for mothers and their babies which are due to ethnic inequalities in high-income countries, starting with the UK.
Project Methods
What do we want to do? What is the role of the public?
We are conducting a Priority Setting Partnership (PSP) adapting the principles of the well-established James Lind Alliance (JLA) procedures. It will consist of 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 uncertainties 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 search existing evidence to identify further research gaps.
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Step 4: Refining questions and uncertainties
The process will produce a list of raw questions 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 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
