Project Title: The Demonstration of Improvement for Molecular Ovarian Cancer Testing (DEMO)
Project Lead & Pilot location: Dr Elaine Leung, Pan-Birmingham Gynaecological Cancer Centre (PBGCC) & Dr Gabriel Funingana, CRUK Cambridge Centre
Inequality Criteria: Minority Groups, Location
Objective Criteria: Improve survival rates & access to care. Improve patient experience
The DEMO project aimed to tackle disparities in genetic testing quality and uptake among ovarian cancer patients in Birmingham and Cambridge. Key issues highlighted included a 34% national failure rate for molecular testing samples and barriers limiting minority group understanding - such as prevalent late-stage diagnosis in non-white communities impacting access to personalised treatments.
In response, the project:
- Identified service gaps and focused on solutions like standardising biopsy pathways
- Implemented a 4-stage multilingual information package on genetic testing to reach underserved groups and increase knowledge around hereditary markers.
- Emphasised patient involvement and co-production, ensuring diverse representation
Emphasising equitable patient engagement, the project achieved the integration of Whole Genome Sequencing (WGS) into clinical care within 3 months for 19 patients.
Key Output Areas:
- Multilingual education materials created in 6 languages to explain biopsy processes and genetic testing options more clearly among marginalised groups
- Quantitative and qualitative data gathered on testing quality, gaps, and patient-reported outcomes to inform streamlining efforts
- 100% testing uptake demonstrated when adequately offered and explained, regardless of language barriers or background
Among the lessons learned were:
- Value of inclusive patient engagement and international collaboration
- Need to address some engagement issues and staffing challenges
- 100% genetic testing uptake when offered
- Set new standards for equitable, patient-centered care
- Created a model focused on overcoming barriers for minority groups
The project provided crucial learnings about building robust systems to support personalised care through enhanced patient representation and IT infrastructure development. Limitations on full adoption capabilities highlight gaps in achieving consistent testing support regionally and nationally.
In conclusion, the DEMO project stands as a symbol of progress in precision ovarian cancer care. Its unique focus on co-production, multilingual information development, and sustainable engagement of underserved groups has set new standards for equitable healthcare delivery. With its dedicated attention to overcoming language barriers and specifically reaching out to non-white communities, the DEMO project serves as an inspiring testament to the potential for innovation, empathy, and excellence in healthcare. It has paved the way for future replication and growth, positioning itself as a pivotal contributor to the ongoing fight against ovarian cancer.