Ovarian cancer experts and patients from Addenbrooke's Hospital and hospitals in Birmingham, have been working together to make information around the benefits of genetic testing more accessible.
Current uptake of genetic testing is low among some groups of women, especially in Black, Asian and Minority Ethnic communities. This is mainly thought to be due to a lack of informed decision-making resources for women whose first language is not English.
With new funding from the charity Ovarian Cancer Action, the Demonstration of Improvement for Molecular Ovarian Cancer Testing (DEMO) project has launched to to explore why some groups of women decline genetic testing after being diagnosed with ovarian cancer, and to improve the uptake of genetic testing in these groups.
By bringing together researchers from the University of Cambridge and its Cancer Research UK Cambridge Centre, with NHS staff at Addenbrooke's Hospital, the future Cambridge Cancer Research Hospital will take this mission forward.
The new state-of-the-art facility will break down the barriers between the laboratory and the clinic, enabling patients to benefit from the latest innovations in cancer science and more personalised cancer treatments.
Currently, additional molecular tests are offered to women who have recently been diagnosed with ovarian cancer, and are a crucial tool to identify the best personalised treatment options for a patient, providing hope for more women to be in remission after 18 months.
The genetic tests also identify whether or not a patient was born with a high chance of developing cancer, and if so, they can take steps to reduce their chance of getting cancer again and share the information with family members if they wish.
The DEMO project
What is genetic testing?
The DEMO team, which includes patients treated at Addenbrooke’s Hospital and hospitals in Birmingham, worked with patient groups representing people from ethnic minorities to identify any barriers and misconceptions around genetic testing.
The involvement of patients from different communities to help produce the information materials was critical from the outset of the project.
The team met several times both in-person and online, and together created a series of three animated videos explaining what genetic testing is, what the results mean and the next steps for patients recently diagnosed with ovarian cancer.
The short videos and accompanying written information have been translated into many different languages, including Punjabi, Urdu, Bengali, Romanian and Polish, and all are freely available online.
"More importantly, I’m hoping it will result in a higher proportion of women, not only to have a better understanding, but taking advantage of the benefits of understanding genetic testing."Margaret from the CRUK Cambridge Centre Ovarian Cancer Patient Group
Margaret is from the DEMO team. She joined the CRUK Cambridge Centre Ovarian Cancer Patient Group in early 2021 following her diagnosis of stage 3 ovarian cancer. She consented to full genome testing which highlighted that her cancer is likely to be more difficult to treat and she is currently undergoing chemotherapy for recurrence.
Reflecting on her involvement in the project, she said: “I’m hoping the videos achieve better understanding and awareness for women of all nationalities especially as much as been learnt during the production of it. More importantly, I’m hoping it will result in a higher proportion of women, not only to have a better understanding, but taking advantage of the benefits of understanding genetic testing.”
The DEMO project will also produce national consensus guidelines on best practices for taking patient biopsies, to ensure genetic testing on tumours can be carried out and patients can benefit from personalised medicine.
Professor James Brenton, Professor of Ovarian Cancer Medicine and co-lead at CRUK Cambridge Centre's Ovarian Cancer Programme, said: “The DEMO project wants to ensure that any woman with advanced ovarian cancer can access the best way of having a biopsy test for molecular testing of her cancer as this is vital to identify the best possible choice for treatment.
“We must reduce health inequalities for women with ovarian cancer and DEMO is tackling this very difficult problem so that we can change the story of ovarian cancer.”
Jacqueline, who lives in Birmingham, was diagnosed with ovarian cancer in 2021 and agreed to take part in the DEMO project after her cancer nurse put her name forward.
She recalls the first project team meeting, saying: “I felt valued from the outset and listened to, which is key. It was a team effort alongside health professionals who were genuinely interested in communicating more effectively with their patients.
“I believe that information on ovarian cancer and the benefits of genetic testing is important information that needs to be out there because of what I learned. I believe it’s key in saving lives.”
"Every woman diagnosed with ovarian cancer, no matter their background, should have access to cutting-edge genomic tests like whole-genome sequencing. It has the power to personalise treatment and drastically improve survival outcomes," said DEMO project co-lead Dr Gabriel Funingana, Clinical Research Fellow in Ovarian Cancer Genomics at Cancer Research UK Cambridge Institute, University of Cambridge.
He said:"The DEMO project is a step toward a healthcare future where every woman with ovarian cancer benefits from the incredible advances in genomics. Together, we are making this future a reality."
The DEMO project is one of seven pilot projects funded by Ovarian Cancer Action’s IMPROVE UK initiative – an innovative nationwide scheme that aims to significantly reduce the inequalities women currently face in healthcare and the disproportionately low survival rates of women with ovarian cancer.
Watch the DEMO videos here (opens in a new tab)
To find out more about the CRUK Cambridge Centre Ovarian Cancer Patient Group, please contact firstname.lastname@example.org