Ovarian cancer experts and patients from Cambridge and Birmingham are working together to improve inequalities in ovarian cancer care.
A new project, funded by Ovarian Cancer Action, aims to improve uptake of genetic testing in women with ovarian cancer, especially in Black, Asian and Minority Ethnic groups that currently have the lowest rates of testing.
The additional molecular information this testing provides helps doctors and patients choose the best, personalised treatment options.
The project team, which includes patients treated at Addenbrooke’s and hospitals in Birmingham, will explore why some groups of women decline genetic testing after being diagnosed with ovarian cancer.
The team will work with patient groups representing people from ethnic minorities to identify any barriers and misconceptions around genetic testing. One area already highlighted is the lack of informed decision-making resources for women whose first language is not English.
Patients, clinicians and researchers will collaborate to produce video and printed information for patients, in multiple languages, to explain what medical procedures are involved in genetic testing, why it is important and the benefits of detailed molecular information about the tumour for personalising treatment for every patient.
The project will also produce nationwide consensus guidelines on best practices for taking patient biopsies, to ensure genetic tumour testing can be carried out and patients can benefit from personalised medicine.
In Cambridge the project is led by Dr Gabriel Funingana, Clinical Research Fellow in Ovarian Precision Cancer Medicine with Prof James Brenton, Professor of Ovarian Cancer Medicine and co-lead CRUK Cambridge Centre Ovarian Cancer Programme. The project team includes researchers and patients from Ovarian Cancer Patient Groups. Prof Brenton said:
Ovarian cancer is a very complex disease and it is essential that all patients are offered detailed molecular testing of their tumour tissue so that they can receive the best treatment. This project will help overcome barriers that prevent patients getting the best advice and reduce inequalities in care.
This work would not be possible without the close involvement of patient groups in Cambridge and Birmingham and their collaboration has meant that together we can frame the right questions to improve patient care
Rhona, who was recently diagnosed with Stage 4 ovarian cancer and is being treated at Addenbrooke’s, said:
A diagnosis turns your world upside down and takes control of your life. Having a genetic test to shape your own personal treatment plan removes that helplessness and involves you as part of the team developing your care.
I feel fortunate being able to benefit from such ground-breaking developments in ovarian cancer treatment. What really hits home is that even ten years ago, the option of a personalised approach to treatment just wasn’t on the table. So my advice: if you’re offered the chance of personal testing, grab it with both hands!
Fiona, who is a member of the Ovarian Cancer Patient Group, was first diagnosed in 2017 and has been clear of cancer since 2019. She said:
Over the past few years due to new technologies in scanning; artificial intelligence, etc and greater understanding of our genes, improvements are being made in medical treatments. I am one of the people who has benefited through these advancements.
Working with the ovarian research project in Cambridge and Birmingham we hope as patients, to play our part in raising greater awareness of these processes as they can lead to better outcomes for many patients.
The project, called The Demonstration of Improvement for Molecular Ovarian Cancer Testing (DEMO), is one of six new projects across the UK to receive funding from women’s health charity Ovarian Cancer Action to improve knowledge, best-practice, and data sharing.
It’s part of the IMPROVE UK initiative – an innovative nationwide project that aims to significantly reduce the unfairness women currently face in healthcare and the disproportionately low survival rates of women with ovarian cancer.