Specialist nurses to support pilot aimed at improving cancer trial diversity

The pilot project, which is supported by the NHS Race and Health Observatory (RHO), aims to improve representation in these clinical trials by raising awareness, improving communications and providing one-to-one support to patients.

It is being run in partnership with Macmillan Cancer Support and in collaboration with biotech company Roche Products Ltd and two NHS trusts – Bart’s Health NHS Trust in London and The Christie NHS Foundation Trust in Manchester.

“There is no ‘hard to reach’ community when it comes to addressing potentially fatal health conditions”

Habib Naqvi

The project, which will run for a year, is set to design new ways for people with breast cancer to access clinical trials.

For example, the pilot aims to create new marketing materials targeted at the underrepresented communities, as well as increasing the data available for research purposes.

In addition, the project will also provide enhanced support for breast cancer patients to ensure they understand the disease, what clinical research involves, and will eventually navigate them to suitable clinical trials.

As part of this, the pilot has promised to recruit two specialist nurses, one at each of the NHS trusts, who will work closely with patients and give them one-to-one support throughout the process.

Recruitment advertising for the two specialist nursing posts will run from October 2023.

The pilot comes as data from across the UK has shown that people from a minority ethnic background are poorly underrepresented in many clinical trials, due to barriers that exist in communication, recruitment and retention.

However, research from the UK Health Security Agency and Breastcancer.org has also revealed that young Black women have more aggressive breast cancer tumour profiles, present with later stages of the disease, have higher mortality rates, and experience poorer cancer care.

As such, the RHO said there was an urgent need to increase participation from these groups in clinical trials.

Habib Naqvi

The chief executive of the RHO, Dr Habib Naqvi, said he was pleased to announce the partnership which would help ensure “inclusion and representation in future breast cancer trials”.

He said: “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.”

The RHO said it had heard from Black female patients that most leaflets provided in hospital or posters only showed older White women as experiencing breast cancer.

Dr Naqvi 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.”

Findings and recommendations from the project will be used to create a case study and framework for future clinical trials.

The pilot will also include men, who account for 1% of breast cancer patients in the UK.

As part of the collaborative effort, 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 of the 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.”