Nurse appointed to improve diversity representation in clinical trials
An ethnic minority nurse dedicated to supporting breast cancer patients officially starts a new role this month following a project to increase diversity and raise awareness and support of breast cancer clinical trials.
In 2023, the NHS Race and Health Observatory announced plans in partnership with Macmillan Cancer Support, Roche Products Ltd and Barts Health NHS Trust in London, to improve health equity in breast cancer clinical trial representation by raising awareness, improving communications and providing longer-term support to patients.
With over 20 years’ experience, Clinical Nurse Specialist, Vicky Konadu has been seconded to the specialist breast nurse post at St Bartholomew’s Hospital (Barts). The post will be funded for a one-year period to provide additional care and support, on average, up to four patients a week. Men, who account for around 1% of breast cancer patients in the UK, are also included.
The role has been established to ensure patients receive additional, individual pastoral support and clear information about relevant clinical breast cancer trials so they can navigate the process with heightened awareness and confidence.
Vicky believes the lack of participation is linked to issues and barriers stemming from misinformation, lack of trust, finances, insufficient support at home and the limited time that clinicians have to support patients. Fear of receiving the wrong treatment or being used as a ‘guinea pig’ for a trial that may go wrong, are often key concerns that some patients may fear.
Vicky said: “I’m looking forward to supporting patients and hope to increase uptake by explaining the benefits of clinical trials and research. There will be dedicated time so patients can really look at their options, consider choices and take their time to ask questions about clinical trials that may be suitable for their particular type of cancer. The number of breast cancer patients we see in the borough of Newham outnumbers White women, so this project is an excellent starting point to engage more and work toward prevention.
“We want to encourage more Black, Asian and ethnic minority people to consider and participate in trials. Awareness on clinical trials needs to be raised consistently, not just during Black History Month or specific breast cancer awareness months, but all year round.”
During her long nursing career, Vicky recalls seeing around three Black men and one Asian man who were diagnosed with breast cancer. She also believes that awareness about clinical trials should be raised at a level which involves local community events, working with trusted, established community leaders within places of worship, as well as mother and baby play groups and other social facilities.
Alongside care and diagnosis delivered by oncologists, Vicky’s role will primarily focus on supporting and engaging with patients; providing them with relevant research on their type of cancer and potential clinical trials, explaining and reassuring before decisions can be fully considered by the patient.
Across England, Black women are routinely found to have poorer breast cancer survival than White women. Women from Caribbean and African backgrounds are also more likely to be diagnosed with breast cancer at later stages, resulting in treatment which can be less successful.
Professor Habib Naqvi, Chief Executive of the NHS Race and Health Observatory, said: “Clinical trials are the foundation of better treatment, yet too many people from diverse communities are excluded from them. This project is about breaking down barriers to participation through building trust, communication, and personalised support so that everyone, regardless of their background, has a fair chance to benefit from the latest advances in healthcare.”
Vicky adds: “We need to demystify the thinking that has been built up on clinical trials over the decades. Women who have had breast cancer, done the research and been through clinical trials, should also be empowered and encouraged to share their stories – this can make such a big difference.”
Historically, data from across the UK show people from an ethnic minority background are poorly represented in many clinical trials, with granular data very limited.
Professor Richard Simcock, Chief Medical Officer at Macmillan Cancer Support said: “Macmillan is proud to support this innovative and exciting project. We are working to ensure that clinical trials reflect the diversity of people affected by breast cancer. Who you are or your background should never dictate the quality of treatment or care you receive, and we must work together to remove the barriers that enforce these divisions. Projects like this are vital in driving change, building trust, and ensuring that breakthroughs in cancer treatment are accessible to everyone, everywhere.”
This programme of work is being led by Dr Ngozi Kalu, Assistant Director, Research and Evidence, NHS Race and Health Observatory, she said:
“Representation in clinical trials is a matter of scientific validity as well as fairness. Vicky’s role ensures that participation in breast cancer research at BARTs is informed, supported, and inclusive. Her work will help to rebuild trust and ensure that the evidence underpinning cancer care truly reflects the communities most affected.”
Equally, for those patients who decline in participating in trials for breast or other types of clinical trials, it’s also important their views are heard.
“Is it a lack of support, religion or potential side effects?”, asks Vicky. “We need to go deeper, spending time exploring the reasons why some patients refuse. We must be able to explain and provide accessible information and let patients know what that additional support is available, so they feel empowered to make decisions to support themselves, their children, and families and also the next generation.”
The partners hope the pilot will serve as a model for inclusive clinical trials across the UK, setting a new standard in how research is designed and delivered. The project’s impact will be evaluated after a year, with the ambition of scaling up successful approaches nationally.
In association with the project announcement, a number of practical resources and translated information leaflets, including videos of women who have taken part in clinical trials, have also been published on the Macmillan Cancer Support website Improving ethnic diversity in breast cancer trials | Macmillan Cancer Support