Policy briefing on using equality data to understand and tackle race inequalities in maternity and antenatal care

This briefing examines the use of equality data in tackling race inequalities in maternity and neonatal care in England. It explains how collecting and using equality data (including on ethnicity) can promote patient safety. It also explains how collecting and using this data can support service improvements.

This will benefit everyone who uses services (service users). However, it will particularly benefit women and birthing people from ethnic minorities, as well as their babies.

The information in this briefing will be useful for health bodies, including:

• maternity and neonatal services
• GP practices
• Integrated Care Boards
• regulators and ombudsmen

It will be informative for policy makers. It is also intended to help practitioners and managers to identify relevant steps and take appropriate action.

Wide-ranging safety concerns have been raised about maternity and neonatal care in recent years. This includes concerns raised by a recent inquiry on traumatic births. Concerns have included evidence about differences in the standard of care provided to women and their babies.

Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK) investigate the causes of maternal deaths, stillbirths and infant deaths. They have reported that maternal mortality rates grew by 15% between 2009-11 and 2019-21 in the UK. Furthermore, peri-natal mortality rates in the UK increased in 2021, after 7 years of year-on-year reduction. The peri-natal period for mothers refers to the time between conception and a year after birth.

As well as overarching concerns about maternity care, there are stark differences (disparities) in access, experiences and outcomes for women from different ethnic groups. For example, maternal mortality rates are four times higher for Black women and twice as high for Asian women, compared to White women. There are also disparities between babies with different ethnicities. A range of organisations, including Birthrights, Fivexmore and Birth Companions, have published detailed evidence about this issue.

There has been an increase in awareness of these disparities in recent years. Change will require long-term commitment and action by a range of bodies to eliminate discrimination and advance equality. There is a need for a focus by the NHS on training, recruitment, confident leadership, better use of data, and increased investment in maternity and neonatal services. Other bodies with a key role to play in improving health outcomes are mentioned in Fair Society Healthy Lives (The Marmot Review).

An important recent step has been the publication of guidance for local maternity and neonatal systems by NHS England, which asked local systems to co-produce and publish equity and equality action plans. This was published in 2021 (during the pandemic), so it will take time to embed and have impact. Implementation of the Workforce Race Equality Standard by NHS commissioners and healthcare providers will be an important lever for change.

Further actions have included:

• the establishment of a Maternity Disparities Taskforce under the previous UK government
• inquiries by parliamentary committees

Various investigations and inquiries have made recommendations to reduce race disparities in maternity and neonatal care. This has included calls for health bodies to collect and use better information on the ethnicity of pregnant women and their babies. It has also included calls for health bodies to collect and use better information on pregnant women’s language needs.

It is important for health bodies to consider equality law when planning their data collection. The Equality Act 2010, the overarching framework for equality law in the UK, sets out nine protected characteristics, including race.

The Act includes the Public Sector Equality Duty (PSED). This requires public authorities and bodies carrying out public functions to actively consider various factors. They are required to consider how to eliminate discrimination, advance equality of opportunity and foster good relations when delivering their functions. This covers a range of health bodies, including:

• NHS England
• NHS Trusts
• Integrated Care Boards
• Care Quality Commission (CQC)
• Parliamentary and Health Services Ombudsman (PHSO)
• GP practices

Collecting equality data is central to the PSED and the courts have emphasised the importance of this. Equality data includes quantitative information, such as the numbers of service users with certain protected characteristics. It also includes qualitative information like feedback from engagement with service users.

Analysing equality data can help organisations understand the potential or actual impact of their policies, practices or decisions on people with different protected characteristics. It can help them decide whether to change their policies or deliver them differently to meet the needs of different groups. This will help improve services and meet the aims of the PSED.

It is important to remember that simply collecting equality information has limited value unless it is used to inform care and reduce inequalities.

Collecting data on race

Under the Equality Act 2010, race can mean someone’s colour, ethnic origins or nationality (including their citizenship). A person’s national origins can be different to their nationality. For example, this would be the case for someone born in Pakistan (with Pakistani national origins) but who now also has British nationality.

Ethnicity data needs to be gathered and recorded consistently. A recent MBRRACE-UK study reported that citizenship and ethnicity were often inaccurately and inconsistently recorded in maternity records. They advised that this may affect the ability of service providers to assess the needs of different groups and to personalise care planning.

Ethnicity categories

Ethnicity information needs to be collected with sufficient granularity to be useful. MBRRACE-UK collates, analyses and publishes data on maternal and peri-natal deaths in the UK. However, due to the data submitted, they are only able to present findings about high-level, aggregated ethnicities (meaning White, Black and Asian groups).

The current NHS Data Dictionary sets national mandatory standards for the collection and analysis of ethnicity standards across NHS bodies. It uses ethnicity categories from the 2001 census. This includes limited ethnicity categories and is significantly out of date. For example, Gypsy and Traveller women report high rates of miscarriage, pregnancy loss and child loss. They are likely to be included under one of the three White ethnic categories within the 2001 census categories. Their needs may remain invisible, unless data is captured about their ethnicity. This can be done using the 2021 census categories.

The NHS Data Dictionary needs to be updated by the UK government to reflect the categories in the most recent census (2021). This sets out five, high-level ethnic groups, covering 19 ethnic categories. This approach would involve ICT suppliers updating information systems to enable trusts to record more detailed ethnicity data.

Language needs

In 2022, over a third of births (36.7%) in England were to one or more parents born outside of the UK. Therefore, information should be collected about pregnant women’s communication needs. This includes their language needs. Information should be collected at, or as soon as possible after, their first midwife appointment (known as ‘booking in’).  

A recent MBRRACE study reported that the identification of and response to language needs was insufficient amongst all ethnic groups. They advised there was inconsistent provision of independent interpreters. They also advised that family members and healthcare staff (who are not employed for their language skills or as interpreters) were inappropriately used instead. This Healthwatch report explains there is a need for better access to interpreting services across the NHS. Therefore, this is not only a matter for maternity and neonatal services.

The Office for Health Improvement and Disparities has published guidance on language interpretation and translation. The British Medical Association has also published a toolkit which includes guidance on language barriers.

Disclosure of equality data

To gather accurate ethnicity data, information should ideally be gathered from service users themselves. NHS Digital have advised that self-reporting is the most effective way to gather ethnicity information. This can reduce stereotyping, compared to information gathered by staff observation.

To encourage service users to feel confident about disclosing their ethnicity, they need to be assured their information will be used meaningfully to improve services. Staff should explain the importance of sharing all relevant information to enable risk factors to be identified. Risk factors may include someone’s ethnicity and their national origins. Service users from ethnic minorities may feel more confident disclosing their ethnicity if the healthcare workforce reflects the diversity of the local population, including at senior levels.

Advance HE has published advice on Encouraging disclosure of equality information. The Race Equality Foundation has published research on Improving the recording of ethnicity in health datasets.

Storing equality data

Data about a person’s protected characteristics (including ethnicity) is likely to be personal information under the Data Protection Act 2018. Therefore, health bodies should collect and store all equality information in line with that legislation, using guidance from the Information Commissioner’s Office.

Other relevant data

When using data to improve care, it can be useful to consider intersectional issues. Intersectional issues can include a person’s race as well as their sex, age, disability, gender reassignment, sexual orientation or religion. This is important because the disadvantages faced by a particular group may be compounded by other protected characteristics. Advance HE (formerly the Equality Challenge Unit) has published guidance on Intersectional approaches to equality research and data.

It may also be useful to analyse information about local deprivation levels. In 2019–21, women in the most deprived areas in England had twice the rate of maternal mortality, compared to those in the least deprived areas. There are also disparities between babies due to deprivation.

As discussed, equality data is one of the tools the NHS can use to better understand and meet the needs of women from different groups. It can help local maternity and neonatal systems as they develop a ‘population needs analysis’ as part of their equity and equality plans.

Gathering and using the right level of ethnicity and language information about pregnant women and their babies can potentially bring a range of benefits for organisations and individuals alike.

It can mean that pregnant women using maternity services can receive more effective care. For example, they may be able to receive timely advice on supplements like vitamin D or information about local advocacy services. When staff have access to accurate ethnicity data, they can deliver care more effectively, such as providing information about diabetes, antenatal tests or checks.

For maternity and neonatal services, using the right level of ethnicity data can be useful for preventing discrimination and meeting the needs of different groups. This may include targeted communication with those ‘booking in’ late or not attending antenatal appointments. It might support more effective monitoring of jaundice in babies. Integrated Care Boards can use ethnicity and language data to make more informed commissioning choices. These choices may include investment in good quality interpretation services or engagement with certain groups.

When regulators identify whether disaggregated ethnicity data (data that is separated out according to ethnicity) is collected and used by services and systems, they can have a better understanding of how maternity and neonatal services are meeting the needs of different groups. They can use this knowledge to drive improvements, supporting health bodies to improve services for all women.

Here are some examples of how ethnicity and language data can be used to support better access, experiences and outcomes for different groups using maternity and neonatal services.

Primary care

A GP practice analyses data about the length of appointments, disaggregated by ethnicity. It identifies a need for longer appointments to be made available when interpreters are used.

A GP practice analyses equality data when deciding which services to provide online. It identifies an ongoing need to:

• provide phone and face-to-face reception services
• enable those at risk of digital exclusion (for example, women from Gypsy and Traveller communities)
• register for antenatal services

Secondary care

A hospital considers inequality issues (including ethnicity data) when investigating safety incidents. This helps it to identify whether assumptions, stereotypes, poor cultural awareness, discrimination or language issues have contributed to adverse outcomes for women or their babies. This information can be used to improve services and promote patient safety.

A hospital encourages women to complete a feedback form about their maternity care. It disaggregates the findings by ethnic group and identifies that ethnic minority women reported concerns about access to timely pain relief. They were more likely than White women to say that staff did not listen to them or respond to their needs during labour. The hospital provides guidance to staff about pain management and training for midwifery staff on cultural competency.

A hospital runs a survey for pregnant women, disaggregated by ethnicity and national origins. It identifies that transport costs can be a barrier for some groups to attend antenatal appointments, including refugees and asylum seekers. The hospital launches a travel voucher scheme, as antenatal care is key to improving health outcomes for mothers and their babies. 

A hospital provides training on the Equality Act 2010 and the PSED. This helps staff recognise the value of analysing disaggregated equality data to understand the impact of their policies and practices on people from different ethnic groups.

A hospital analyses complaints information, disaggregated by ethnicity. It identifies that women from ethnic minorities are less likely to make complaints, compared to White women. It puts up posters around the hospital to raise awareness about its patient advice and liaison service (PALs).

An NHS Trust reviews national ethnicity data about the NHS workforce. This includes data about staff ethnicity at different bands, access to training and career progression. It compares national data with data from its own workforce to assess how it is performing and to plan relevant actions. 

System level

A Maternity and Neonatal Voices Partnership engages with service users from different ethnic groups. Refugee and asylum-seeking women report a lack of awareness about health services. In response, the partnership produces information about local antenatal and maternal mental health services. They promote the information via nearby community groups. 

An Integrated Care Board analyses information about the ethnic make-up of its local population when commissioning services. It uses this to make a business case for funding maternity support workers, who support women to access and navigate antenatal services, using community languages.

Collecting equality information

The UK government should amend the NHS Data Dictionary, so it reflects the ethnic categories set out in the most recent census (2021).

Maternity and neonatal services should collect and store accurate information about the protected characteristics of pregnant women (including ethnicity) and their babies.

Pregnant women should be prompted by staff to self-report their ethnicity when ‘booking in’ for antenatal services. If they choose not to share this information, they should be given further opportunities throughout and after their pregnancy.

Pregnant women should be asked about their language needs if they self-refer to services.

NHS Trusts should produce key messages and examples (ideally, with service users) about:

• why detailed ethnicity data is collected
• how it is used to improve maternity and neonatal services
• how personal information is processed and stored

Messages should be disseminated widely to staff and service users in primary and secondary care settings.

Storing equality information

Maternity and neonatal services should process and store equality information (including ethnicity data) in line with the Data Protection Act 2018 and follow relevant guidance from the Information Commissioner’s Office.

Using equality information

Maternity and neonatal services should actively use equality information (including equality data and feedback from engagement) to understand the impact of their policies, practices and decisions on service users from different ethnic groups.

They should use their findings to deliver services in a way that addresses unmet need, reduces race inequalities and provides better quality and better value care.

For more information, read The Public Sector Equality Duty (PSED).