A new pilot project supported by the NHS Race and Health Observatory was announced today (31) to increase the number of Black, Asian, and ethnic minority patients taking part in potentially life-enhancing breast cancer clinical trials.
The project is in partnership with Macmillan Cancer Support, Roche Products Ltd, and two NHS trusts – Bart’s Health NHS Trust in London and The Christie NHS Foundation Trust in Manchester.
The project will run for a year and will aim to improve health equity in breast cancer clinical trial representation by raising awareness, improving communications, and providing longer-term support to patients.
It will also involve the recruitment of two specialist nurses, one at The Christie and one at Bart’s Health, who will 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.
Historically, data from across the UK show people from an ethnic minority background are poorly underrepresented in many clinical trials with granular data limited.
Current studies conducted by the UK Health Security Agency and Breast Cancer.Org reveal that in the context of breast cancer, young Black women exhibit notably more aggressive tumour characteristics, are often diagnosed at later disease stages, face elevated mortality rates, and encounter suboptimal cancer care.
These findings provide additional support to bolster participation from these demographic groups in clinical trials.
Despite being in its initial phases, the project has already discerned several potential remedies to enhance representation.
These include devising action plans to amplify the involvement of individuals from Black and ethnic minority communities in breast cancer clinical trials; generating tailored marketing resources for the targeted communities, augmenting data collection, establishing comparative baselines, and maintaining patient retention records for research objectives.
Additionally, the project aims to offer heightened support to ensure that breast cancer patients understand the nature of the disease, the essence of clinical research, and the process of navigating suitable clinical trial options.
The recruitment advertisement for the two specialised nursing positions is scheduled to be active starting October 2023.
Jasmin David, a 53-year-old breast cancer patient from Manchester, is one of the patients who will be supported by the project.
Two years following her initial diagnosis and treatment at The Christie, it was revealed that her cancer had returned, spreading to her lungs, lymph nodes, and chest bone. She received the heartbreaking news that she had less than a year to live.
Fortunately, Jasmin was presented with the opportunity to participate in a clinical trial at the National Institute for Health and Care Research (NIHR) Manchester Clinical Research Facility (CRF) at The Christie. As a result of this trial, she is now cancer-free and is living her life to the fullest.
She said, “I want everyone, no matter their ethnicity, to have equal access to clinical trials, so I’m glad that this important piece of work is being done. I hope that by sharing my story I can inspire more women like me to come forward and take part in clinical trials.”
Dr Habib Naqvi, the chief executive of the NHS Race and Health Observatory, expressed satisfaction in announcing the collaboration and shared commitment towards inclusivity and representation in future breast cancer trials.
He acknowledged historical limitations in recruiting diverse samples for clinical trials and emphasised that with targeted, culturally sensitive approaches, underrepresented groups can be effectively engaged.
While professor Richard Simcock, the chief medical officer at Macmillan Cancer Support, highlighted the importance of research relevance to clinical practice. He commended Macmillan’s support for the project to ensure that future clinical trial evidence remains inclusive and representative.
Charles Kwaku-Odoi, chief executive of the Caribbean African Health Network, emphasised the legacy of disengagement in research within the Black community and welcomed the partnership’s efforts to address barriers, build trust, improve awareness, and promote engagement in clinical trials for breast cancer treatment.
Richard Erwin, general manager of Roche Products Ltd., acknowledged the pressing concern of recruiting individuals from minority ethnic groups and reiterated Roche’s commitment to overcoming disparities and enhancing patient access to clinical trials.
The Observatory, Dr Naqvi noted, has received feedback from Black women about the misperception surrounding breast cancer experiences. He underlined the importance of this project in encouraging women to share their experiences and information, especially those at risk or undergoing treatment.
The project’s findings and recommendations will contribute to a case study and framework for future clinical trials, jointly funded by the Observatory and Macmillan.
The project, initiated in August 2022, is scheduled to conclude in March 2025.
Further, research conducted in 2020 by the National Institute for Health Research (NIHR) identified barriers to inclusion of underserved groups in clinical trials, encompassing communication challenges, differing agendas, and trust issues.
The NHS Race and Health Observatory, hosted by the NHS Confederation and supported by NHS England, addresses long-standing inequalities affecting ethnic minority patients and communities, including issues exacerbated by the pandemic.
Macmillan Cancer Support is a leading cancer care charity in the UK which aims to enhance cancer support for all individuals.