The scale of the problem

The statistics are alarming: Black women are 3.7 times more likely, and Asian women 1.8 times more likely, to die during pregnancy, childbirth, or the immediate postpartum period compared to white women¹. Beyond these striking outcome measures, 43% of BAME women report that their race negatively impacted the quality of care they received, often feeling unsafe, ignored, disbelieved, and deprived of informed choice². 

Addressing these inequalities has become a priority for both the NHS and wider government. In 2022, then Minister for Women's Health, Maria Caulfield, emphasised the urgency of the situation:

"For too long, disparities have persisted which mean women living in deprived areas or from ethnic minority backgrounds are less likely to get the care they need, and worse, lose their child. We must do better to understand and address the causes of this³."

Changing Conceptions: From traumatic events to end-to-end journeys

Current efforts to address inequalities in maternity care have largely focused on singular traumatic events, such as perinatal deaths and stillbirths. These indicators represent the catastrophic endpoint of deep-rooted, systemic racism across the entire maternity experience.

These crucial indicators, while easily measured and clearly evidencing inequalities, are merely the tip of the iceberg regarding racial disparities. They represent the culmination of differences in awareness, access, and provision of maternity care throughout the entire journey—from pre-pregnancy through conception to motherhood.

Working with Create Health Foundation, we heard first-hand from over 300 women how inequalities extend beyond the traditional view of the maternal journey. For example, 74% of Asian women and 58% of Black women reported the belief that "having more knowledge of pre-pregnancy services would have helped me have a better pregnancy", compared to 50% amongst their White counterparts⁴.

To address unequal outcomes, we must focus on inequalities at each touchpoint with the system on the end-to-end maternity journey.

We must look beyond traumatic outcome measures to incorporate data on both women's experiences of maternity care, and medical decision making. The two are closely linked. BAME women's experiences of not being listened to, their concerns being disregarded, and perpetuation of racial stereotypes are increasingly evident in the data. For instance, racialised perceptions around pain thresholds mean that Black women are less than half as likely to have an assisted vaginal birth compared to their white counterparts.

Addressing these disparities demands a data-driven understanding of how women from different racial and ethnic backgrounds interact with maternity care and services. Effective interventions need rich, comprehensive data that maps differences in the experience and realities of maternity care across geographies, systems, and time. However, data quality, completeness, and granularity are regularly cited as challenges within maternity services, including by both the Ockenden Review and MBBRACE-UK. 

The next question is: how can we capture this data, at scale? A potential answer may lie within a tool that already exists – Digital Red Books. 

Digitising Red Books: A Priority of the New Government

Introduced in 1991, the Personal Child Health Record, colloquially known as the 'Red Book', is a comprehensive document used to track and monitor a child's health, development, and immunisations from birth to age five. Issued to parents or guardians shortly after birth, the Red Book has become an essential tool for parents and healthcare providers to ensure that children receive appropriate healthcare and support during their early years.

The recently elected Labour government has already signalled intentions to modernise the Red Book. Their new Child Health Action Plan will be underpinned by the transition from analogue to digital, with a key focus on:

"Digitising the Red Book [...] to make it easier to access health records for parents and children, informing the best choices⁵."

Under the proposed reforms, children's health records will be kept on their parents' NHS app, replacing the paper-based Red Book. 

But we think the opportunity to enhance and extend the Red Book can go much further, providing a foundation for more equal maternity care...

With approximately 600,000 children born in the UK annually, the Digital Red Book platform has unrivalled potential to collect the data required to understand the manifestations and drivers of systemic racism in maternity care. 

Moreover, extending the Red Book's scope has potential to develop a single mother and child platform that supports both through the end-to-end pregnancy journey, from pre-pregnancy through early years. Leveraging this technology to its full potential could create a more equitable, data-driven approach to maternity care that supports mothers and children from all backgrounds.

Enhancing and Extending Red Books: A tool to address inequalities

While the development and rollout of a comprehensive mother-and-child platform will inevitably take time, the urgency of addressing maternity care inequalities demands immediate action. 

We suggest a two phased approach. A more immediate enhancement of the Digital Red Book tool within its existing scope, and a longer-term extension of the tool into a single platform for parents and the NHS that supports mother and child from the decision to conceive or conception through the early years. 

Phase 1 - Enhancement:
The current lack of large-scale data on women's experiences with maternity care services hinders efforts to accurately map inequalities across time, place, and local systems. With relatively small enhancements to the Digital Red Book tool, we can begin to fill these data gaps.

One solution is integrating surveys into the Red Book design – to be completed immediately after childbirth and then at 6-month intervals. These surveys would ask women to record their experiences of pregnancy, motherhood, and the services that support them. This would yield the most extensive dataset on women's maternity experiences in the UK, enhancing our understanding of how a woman's identity impacts her experience of maternity care. A crucial, and quickly realisable, first step in addressing unequal outcomes. 

Phase 2 - Extension
The long-term vision involves extending Red Books both temporally – from pre-pregnancy to motherhood – and in scope, evolving from a tool supporting childhood development to one that supports mother and child throughout the entire maternity journey. This extension would involve integrating a mother's health records, Personal Care Plan, pre-pregnancy and pregnancy resources, and existing Red Book functionality into a unified platform. Creating a single source of truth, to support the goal of equitable maternity care for all women.

Some potential key features and opportunities of an extended Red Book tool:

1.    Signposting resources and services 
It is well documented that women from different backgrounds have differential knowledge of, access to, and availability of services. To promote equality and eliminate information asymmetries that exist even before conception, the extended Red Book should feature a comprehensive catalogue of pre-pregnancy and pregnancy resources and services. This would empower women with the information needed to make informed decisions about their pregnancy, helping to maximise the chances of a healthy pregnancy for women of all backgrounds.

2.    Quantitative data collection 
Medical decision-making in maternity care varies considerably for BAME women compared to their white counterparts. Yet our understanding is limited. By integrating patient health records and Personal Care Plan functionality, we can gather data on all interactions with the system. Each interaction of every woman with maternity services becomes a valuable datapoint, providing quantitative insights into medical decisions, treatment options, and interventions. This would facilitate an accurate and highly detailed mapping of inequalities in medical decision-making across different systems and throughout the maternity journey. Providing the evidence base for targeted and effective interventions that erode the pillars of systemic racism, and therefore unequal outcomes. 

3.    Qualitative data collection
With the extension of Red Books to include pre-pregnancy and pregnancy, the retrospective surveys proposed in the enhancement phase can be replaced with real-time data collection. Either at regular intervals or as follow-ups to key maternity events, these surveys would capture women's experiences of awareness, access, and quality of care, in the moment. Supplementing quantitative data with the experiential data necessary to complete the picture of racial inequalities in maternity care.

This new conception of the Digital Red Books tool could eliminate information asymmetries, reduce barriers to access, and capture detailed data on women's experiences and realities of maternity care. Underpinning targeted and effective interventions to address systemic inequalities. Moreover, once interventions have been designed and implemented, the Digital Red Book would provide a ready-made tool to measure their effectiveness. By tracking changes in both qualitative and quantitative metrics over time, policymakers could efficiently fine-tune interventions.

Conclusion: Towards an equal future

By combining these two related but distinct ambitions – tackling inequalities in maternity care and digitising Red Books – the newly appointed Labour government has an opportunity to create impact greater than the sum of its parts. Leveraging digital technologies in this manner can pave the way for an accessible and equitable maternity service that truly responds to the diverse needs of the UK population. 

The PSC exists to make public services brilliant. We work with clients to co-create innovative new digital services and approaches to tackling challenges facing public services - putting patients and the public at the heart of our work, and giving a voice to those who need it most. Get in touch with us at hello@thepsc.co.uk to see how our Digital Team can support you with your next innovative project. 

Sources:

1 - MBRRACE-UK,Saving Lives, Improving Mothers’ Care: Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2018-20(November 2022), p.13

2 - Five X More, The Black Maternity Experiences Report (May 2022), p.20

3 - DHSC and Maria Caulfield, New taskforce to level-up maternity care and tackle disparities (July 2022)

4 - Create Health Foundation, "Where did it start for you?": Understanding the pre-pregnancy experiences of BAME women (November 2023), p.4

5 - The Labour Party, Labour's Child Health Action Plan will create the healthiest generation of children ever (July 2024)