Understanding differences in breast cancer experiences

What’s the title of the study?

Towards Equitable precision Breast Cancer Care: Evaluating Clinical and Genetic Assessment Across Diverse UK population.

What’s the project about?

We know that people in some ethnic groups have a worse experience of breast cancer than others. Breast cancer is found later. Treatment may be less effective. Long-term survival may be lower.

There are lots of reasons for this. However, because a lot of tests and treatment were developed for people of European ancestry, it’s not clear which factors are the main drivers of this.

Researchers and clinicians at Royal Free London NHS Foundation Trust are planning a study which aims to understand these differences. They’ll follow between 400 and 600 patients diagnosed with breast cancer, and compare their experiences of treatment, surgery, follow up and outcomes across different ethnic groups.

They also want to investigate access to genetic testing, and factor that influence who people choose to get tested or not.

They’re looking for people affected by breast cancer to help them design the study materials to ensure that they’re clear, sensitive, and relevant to people from a range of backgrounds.

Who’s organising it?

Name of project lead: Jajini Varghese and Josephine Ngugi

Job title: Consultant

Organisation: Royal Free London NHS Foundation Trust

Email address: josephine.ngugi@yahoo.com

Phone number: 07908 111 622

Who can take part?

You can take part if you’ve been personally affected by breast cancer, whether a through friend or family member, or a personal diagnosis.

The researchers are particularly keen to hear from people from a range of ethnic backgrounds.

Why do you want me to be involved?

By taking part, you can help make sure that the study materials are accessible and sensitive, especially when asking about topics such as ethnicity or barriers to care.

This will help study participants feel comfortable taking part, meaning that the research can represent the diverse experiences of people in the UK.

Ultimately, the team hopes that this study could shape breast cancer care to make it more accessible and equitable.

What will you ask me to do?

You’ll be asked to help shape the design of the study materials, before the study formally begins. This would include:

• Reviewing a draft participant information sheet and consent form

• Giving feedback on a short patient questionnaire

• Sharing your views on clarity, tone, and whether anything feels uncomfortable, confusing, or missing. This is particularly important for questions around ethnicity and barriers to care, including participating in genetic testing

This will be done either through an online small group discussion, or a 1 to 1 conversation. It will last 60 to 90 minutes. There may also be opportunities to get involved in the project further down the line. For example, commenting on how findings are shared with patients.

How do I get involved?

If you’re interested in taking part, please complete the online sign up form. The team will then be in touch with further details, and to arrange a time with you.

If you have any questions, or would rather get in touch with the team directly, you can email Josephine at josephine.ngugi@yahoo.com or call her on 07908 111 622.

When’s the deadline?

15 September 2026