The NHS has launched a drive to break down misunderstandings around breast cancer, in particular the idea that it is predominantly “a white person’s disease”.
A pilot project will work to increase the number of Black, Asian and ethnic minority patients taking part in breast cancer clinical trials.
The one-year project is a collaboration between Roche Products and two NHS trusts – Bart’s Health NHS Trust in London and The Christie NHS Foundation Trust in Manchester – and is being supported by the NHS Race and Health Observatory and Macmillan Cancer Support.
It will look to design new ways for people with breast cancer to access clinical trials and establish better information processes.
It will also involve the recruitment of two specialist nurses – one at The Christie and one at Bart’s Health – from October to work closely with patients and give them one-on-one support throughout the process. Men, who account for 1% of breast cancer patients in the UK, will also be included.
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Other goals of the project are to develop action plans to improve the representation of people from Black and ethnic minority communities in breast cancer clinical trials and create new marketing materials targeted at these communities.
The project will also look to increase data, comparative baselines and patient retention records for research purposes and to enhance support to ensure breast cancer patients better understand the disease and how to access suitable clinical trials.
The project is being driven by the recognition that, historically, people from an ethnic minority background are poorly under-represented in many clinical trials, with granular data often limited.
Research from the UK Health Security Agency and Breast Cancer.Org has also suggested that, when it comes to breast cancer, young Black women in particular have more aggressive tumour profiles, present with later stages of disease, have higher mortality rates, and experience poorer cancer care.
This, in turn, has strengthened the rationale to increase participation from these groups in clinical trials. Findings and recommendations from the project will be used to create a case study and framework for future clinical trials.
Dr Habib Naqvi, chief executive of the NHS Race and Health Observatory, said: “There is a broad misperception that Black women don’t suffer as much from breast cancer or it does not run in their family history.
“This can result in the perception that cancer is a white person’s disease. We want this pilot to encourage women at risk, those already diagnosed and individuals undergoing post-treatment to come forward and share their experiences and get the information needed.”
Charles Kwaku-Odoi, chief executive of the Caribbean African Health Network, said: “Across the Black community there is an undoubted legacy of disengagement in research and most certainly clinical trials that stems back decades as a result of mistrust. This has not served us well because it leads to a lack of appropriate interventions that perpetuate the grave health inequalities in breast cancer care.
“This partnership approach to build solutions to improve engagement in clinical trials in breast cancer treatment and care is very much welcomed. We are looking forward to working in a collaborative way to build trust, improve awareness and ensure that barriers surrounding access to clinical trials are addressed.”
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