Increasing the uptake of genetic testing with ovarian cancer patients
The DEMO project aims to increase genetic testing for ovarian cancer patients by addressing language barriers and providing tailored resources.
Current uptake of genetic testing for ovarian cancer patients is low among certain groups, particularly Black, Asian, and Minority Ethnic communities. This is often due to a lack of informed decision-making resources for women whose first language is not English.
Researchers from the Brenton Group have collaborated with Cambridge University Hospitals and Sandwell and West Birmingham NHS to launch the Demonstration of Improvement for Molecular Ovarian Cancer Testing (DEMO) project.
Funded by Ovarian Cancer Action, it set out to explore why some groups of women decline genetic testing after being diagnosed with ovarian cancer, and to increase the uptake of genetic testing in these groups.
The DEMO team, which includes patients from Addenbrooke’s Hospital and hospitals in Birmingham, worked with patient groups representing ethnic minorities to identify barriers and misconceptions around genetic testing. They created a series of animated videos explaining genetic testing, the results, and next steps for recently diagnosed patients. These videos and accompanying written information have been translated into several languages, including Punjabi, Urdu, Bengali, Romanian, and Polish, and are freely available online.
The DEMO project will also produce national guidelines on best practices for patient biopsies to ensure genetic testing can be carried out, enabling personalised medicine.
The DEMO project is part of Ovarian Cancer Action’s IMPROVE UK initiative, which funds pilot projects aimed at reducing healthcare inequalities and improving survival rates for women with ovarian cancer. Through collaborative efforts and innovative approaches, the DEMO project is paving the way for a future where every woman with ovarian cancer has access to advanced genomic testing and personalised treatment options.
