Addenbrooke's patients are taking part in a pilot scheme to improve the uptake of genetic screening for ovarian cancer, especially in BAME communities that have the lowest rates of testing.
The project aims to improve inequalities in ovarian cancer care, especially in Black, Asian and Minority Ethnic groups.
The additional molecular information provided by genetic testing helps doctors and patients choose the best, personalised treatment options.
The project team, which includes patients treated at Cambridge University Hospitals (CUH) and hospitals in Birmingham, will explore why some groups of women decline genetic testing after being diagnosed with ovarian cancer.
Ovarian cancer: Watch this video to hear CUH patient stories (opens in a new tab)
In Cambridge the project is led by Dr Gabriel Funingana, clinical research fellow in ovarian precision cancer medicine with Prof James Brenton, co-lead CRUK Cambridge Centre Ovarian Cancer Programme.
Prof Brenton said:
“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.”
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
Prof James Brenton, professor of ovarian cancer medicine
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.
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
Fiona, CUH patient
Fiona and Rhona are both patients at CUH and part of the Patient Participation Group for ovarian cancer and will form part of the new project too.
Rhona was recently diagnosed with Stage 4 ovarian cancer and is being treated at Addenbrooke’s. She 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.
"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 said:
“Over the past few years due to new technologies such as scanning and artificial intelligence, we have a greater understanding of our genes and improvements are being made in medical treatments. I am one of the people who has benefited through these advancements."
Research into ovarian cancer: Prof James Brenton explains the latest treatments
Link: https://youtu.be/D6jTL0y8ixM
Dr Elaine Leung, Academic Clinical Lecturer in Gynaecological Oncology is leading the project in Birmingham with the Pan-Birmingham Gynaecological Cancer Network, which includes one regional centre and five gynaecological cancer units, supporting a diverse population of 2.2 million.
The new project builds on the team’s previous experience with the genetic testing studies, looking at BRCA testing in women with a new diagnosis of ovarian cancer before it became mainstream practice.
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.
The funding for IMPROVE UK comes from a £1 million investment the charity secured from the UK Government Tampon Tax Fund.
More info: https://ovarian.org.uk/our-research/improve-uk/improve-uk-Birmingham-Cambridge/ (opens in a new tab)
For more NHS information on ovarian cancer: https://www.nhs.uk/conditions/ovarian-cancer/ (opens in a new tab)