A new pilot project aimed at increasing the number of Black, Asian and ethnic minority patients taking part in potentially life-enhancing breast cancer clinical trials has been announced today, 31 August.
Supported by the NHS Race and Health Observatory and in partnership with Macmillan Cancer Support, the collaboration with Roche Products Ltd and two NHS trusts – Bart’s Health NHS Trust in London and The Christie NHS Foundation Trust in Manchester – is aiming to improve health equity in breast cancer clinical trial representation by raising awareness, improving communications and providing longer-term support to patients.
The project – running for a year – will design new ways for people with breast cancer to access clinical trials and better information processes. It will also involve recruitment of two specialist nurses – one at The Christie and one at Bart’s Health – employed 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.
Multiple barriers around recruitment, communication and retention of Black, Asian and ethnic minority patients exist in clinical trials. 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 research from the UK Health Security Agency and Breast Cancer.Org also show 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, further strengthening the rationale to increase participation from these groups in clinical trials.
The project is still in its early stages, but since the collaboration started it has identified a number of potential solutions to improve representation, including:
- Developing action plans to improve representation of people from Black and ethnic minority communities into breast cancer clinical trials
- Creating new marketing materials targeted at the communities the project is aiming to reach
- Increasing data, comparative baselines and patient retention records for research purposes
- Providing enhanced support to ensure breast cancer patients understand the disease, what clinical research is and navigating patients to suitable clinical trials.
Recruitment advertising for the two specialist nursing posts will run from October 2023.
Jasmin David is a 53-year-old breast cancer patient from Fallowfield in south Manchester. Two years after her initial diagnosis and treatment at The Christie NHS Foundation Trust in Manchester she was told that the cancer had come back and had spread to her lungs, lymph nodes and chest bone. She was given the devastating news that she had less than a year to live.
Luckily Jasmin was offered the opportunity to take part in a clinical trial at the National Institute for Health and Care Research (NIHR) Manchester Clinical Research Facility (CRF) at The Christie. She is now cancer free and living her life to the full.
“If I hadn’t gone on the trial at The Christie, I wouldn’t be here today. I have two children and now I get to be there for them as they grow up. Research gave me a second chance and life and I’m relishing every second of it.
“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.”
Chief Executive of the NHS Race and Health Observatory, Dr Habib Naqvi, said:
“We are pleased to announce this partnership and our joint commitment to ensuring inclusion and representation in future breast cancer trials. Initial research has traditionally found limitations in recruiting representative samples for clinical trials across breast cancer and other life limiting conditions. However, we believe that when targeted, culturally sensitive interventions and communications are put in place, underrepresented groups can be successfully recruited into clinical trials.
“There is no ‘hard to reach’ community when it comes to addressing potentially fatal health conditions.”
Professor Richard Simcock, Chief Medical Officer at Macmillan Cancer Support said:
“As a Breast Cancer Oncologist I want to know that research is relevant to the people we see in clinic. Historically that has not been the case. I’m delighted that Macmillan can support this project to ensure that future evidence from clinical trials is representative and inclusive.”
As part of the collaboration, community health organisation, the Caribbean, African Health Network will lead on engaging breast cancer service users in the wider community, beyond clinical settings.
Charles Kwaku-Odoi, Chief Executive, 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.”
Richard Erwin, General Manager, Roche Products Ltd, added:
“The recruitment of people from minority ethnic groups is a pressing concern for researchers and the research community. Roche is committed to overcoming these disparities and addressing barriers to clinical trial participation across all patients and groups. Programmes such as this one are vital in helping us enhance the future designs of our clinical trials and ensure greater inclusion and better patient access to all of our clinical trials.”
Whilst the experience of a breast cancer diagnosis can be devastating to anybody affected, the Observatory has received anecdotal feedback from Black women that most leaflets provided in hospital or posters only show older white women as experiencing breast cancer.
“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”, added Dr Habib Naqvi. “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.”
Findings and recommendations from the project will be used to create a case study and framework for future clinical trials.