Breaking down barriers: Empowering Black women in breast cancer care

By Sarah Workman and Maddy Thompson, Keele University

As global care shortages worsen, healthcare providers are turning towards self-care agendas. This involves urging individuals to make savvy and informed decisions and sensible lifestyle choices, and pushing patients towards digital tools and spaces to self-manage conditions in the home. In some ways, the self-care agenda allows a more democratic form of healthcare delivery, removing some barriers to medical knowledge, and giving people tools to recognise signs of ill-health, understand how to access care, and build the capacity to better self-manage conditions. In other ways, it leads to the further entrenching of historical spatial, ethnic, and socioeconomic health inequalities and injustices. Here, focusing on the case of breast cancer in the UK, we demonstrate how black women are excluded from benefiting fully from the self-care agenda.

Breast cancer care in the UK

Faced with crippling backlogs the NHS has long pushed a self-care agenda, including the use of screening programmes aiming to diagnose illnesses early, reducing both physical burdens to individuals with illnesses and the financial costs associated with treating later stage conditions.

The National Health Service Breast Screening Programme, launched in 1998, invites woman aged 50-70 years of age residing in the UK for routine examination every three years. It has been credited with saving an average 1400 lives in England every year. Additionally, the NHS works with, and directs patients towards three national charitable organisations – Breast Cancer Now, Macmillan and Cancer Research UK. These charities have done much to raise awareness of how to self-examine for breast cancer symptoms and encouraged women to attend the NHSBSP screening appointments through national media campaigns. They also provide extensive knowledge, including cutting edge medical research, patient stories, and diagnostic tools and images.

But the successes of these initiatives are uneven. Analysis of UK based cancer registry data demonstrates that despite having lower breast cancer incidence rates than white British women, black women are twice as likely to be diagnosed with a poorer breast cancer prognosis and at a later stage than white women in the UK. More than this, black women are more likely to die from breast cancer than white women, and tend to experience the disease at a younger age. There is also something of a geographical disparity to this. Black African women – i.e. those born in Africa – for example, are even more likely than black British women and black Caribbean women to have a later diagnosis and poorer outcomes.

Historically, breast cancer has been understood, represented, and researched as a white woman’s disease, or at least one that predominantly affects white women. There is thus a need to decolonize medical and social understandings of breast cancer to ensure that breast cancer care does not continue to exclude non-white bodies.

Inequalities in breast cancer care

There is a lack of clear understanding about the genetic, epigenetic, and biological causes of breast cancer, and thus, social scientists and geographers examine the social determinants of health to attempt to explain the disparities. Our review of this literature, predominantly based in the US, Australia and the UK, brings attention to four key causes of ethnic disparities in breast cancer outcomes:

Environmental and lifestyle factors – air pollution, radiation, weight, alcohol consumption, smoking status, diet, and existing health conditions are all risk factors of breast cancer. Thus, following Bambra (), where someone lives – which dictates their air quality, access to healthy foods, etc. is an underlying risk factor to breast cancer.
Socioeconomic status – higher socioeconomic status has been associated with increased likelihood of diagnosis, although not with mortality. Here, better access to healthcare and higher education levels correlate with improved survival outcomes. Socioeconomic status is inherently connected to environmental and lifestyle factors.
Medical parochialism – a lack of clinical understanding of ethnic variations in breast cancer, a reflection of structures of racism that permeate clinical research beyond cancer, means relatively little is known about breast cancer for non-white and non-women populations. Beyond this, medical racism can also lead to marginalised bodies not being believed and appropriately treat, and healthcare workers may not be educated to recognise and treat conditions in non-white bodies.
Cultural factors – black women migrants, particularly from the global south, have been found to have lower awareness of self-examination and provision of breast screening programmes and/or perceive it as a white women’s disease. Language has also been shown create barriers in accessing breast care, as does anxiety about engaging with unfamiliar conditions in medical systems. Additionally, the lack of representation in breast screening literature or media campaigns further contributes to issues of exclusion.

Following from this and based on our understanding of the importance of representation and diversity in health promotion in both offline and online spaces, we analysed the UK breast cancer landscape, to bring attention to key areas that may be prioritised to address the existing breast cancer inequalities, focusing on areas of easiest intervention – medical parochialism and cultural factors. To do so, we conducted research into the landscape of promotional digital health literature and breast cancer policy initiatives in the UK.

Breast cancer care for who?

Our analysis shows that online spaces dedicated towards breast cancer in the UK are skewed towards representing white women, lacking adequate illustrative images of self-examination for women with Black or darker skin tones. While we noted recent moves to include non-white faces in broader campaigns, there are no self-care images for women with Black skin, and few examples of real-life stories of black women.

Breast Cancer Now was the only place to feature illustrations of cancer on black skin, and although a step in the right direction, this does little to offset the lack of diversity in the wider material we examined. Limited if any information is given concerning higher risks to black women and the likeliness of earlier onset of disease. Again, Geography matters here. In the US, for instance, black women (and other high risk groups) are invited for earlier breast screening.

This issue also extends in medical education resources that lack tailored learning about disease appearances and processes in Black and ethic minority individuals. Black and Brown Skin: Mind the Gap – an organisation dedicated to collecting images and data to better ensure ethnic minorities are better represented in medical literature and education has been unable to find photographic depictions of breast cancer in black women. Adding to the barriers already faced, having no reference as to what breast cancer may look like on black skin makes it particularly hard for black women to engage in the NHS’s self-care agenda, and for NHS workers to have the knowledge to accurately diagnose and treat black skin.

The future of breast care

Ensuring UK breast cancer care becomes spatially and ethnically just and equitable is a difficult yet morally important task, and part of wider ‘efforts to tackle racism and discrimination within the health and care system’ as called for in the 2021 COVID-19: Understanding the Impact on BAME communities report. Based on our analysis of the UK breast cancer landscape, we propose two relatively low-cost interventions to help in this endeavour.

Recognising that attempts to provide health equality must go beyond providing equality to access, we suggest the NHSBSP follows the US in offering targeted early intervention programmes to at risk groups, whether by ethnicity, socioeconomic status, or geographical location.
Including diagnostically useful photographic images of breast cancer on non-white skin would provide the opportunity for more people to engage with and understand the signs of breast cancer, and would help in wider goals to decolonise medical knowledges and practices.

Ensuring black bodies are represented and made visible in breast cancer knowledges and policies, particularly in the face of the neoliberal self-care agenda where individuals are increasingly responsibilised for their own health, must be an imperative if we are to aim for a just world.

About the authors: Sarah Workman began her career as a Radiographer and gained 14 years experience in various radiology settings before moving to commissioning of health care services. She recently graduated with a Masters in Global Public Health from Queen Mary’s University, London and has a particular interest in equality in medical education. Maddy Thompson is a Leverhulme Trust funded postdoctoral researcher at Keele University with interests in health geographies. Her other work examines the increasing digitisation of health as well as geographical inequalities in health.