Case study: Cancer Research UK Cambridge Centre Women+s Cancers PPIE Group

You have learnt in 4.2 and 4.3 how patient partners can be involved in research. Read this example from Cancer Research UK on how they have set up the Woman’s Cancers PPIE group, and involved patient partners in every research project, grant application and clinical trial planning.

Dr Marie-Lyne Alcaraz is the Programme Manager for the Women+s Cancers Programme Patient and Public Involvement and Engagement (PPIE) group at the Cancer Research UK Cambridge Centre (CRUK Cambridge Centre), UK. She explains how this patient group was created, what it does, and the remarkable impact it has already made.

Our Women+s Cancers PPIE group was created in 2019 and now involves more than 45 patients, not only from Cambridge but from all over the UK and internationally. Partners, carers and family members are also involved.

When recruiting new volunteer members, I have a discussion with them to find out if the group is the right fit for them. Although everyone is living with cancer, our members bring a positive mindset, supporting one another, and often want to give something back as part of their legacy.

We used to meet in-person, when everyone in the group was based locally. However, as our membership has expanded nationally and internationally, we now meet online every Tuesday evening. Around 20 core members attend regularly. Other members contribute their advice and experiences by email, respond to surveys or attend events. The group meet in-person few times a year, as well as at conferences and symposia.

The PPIE group is at the centre of every research project, grant application and clinical trial planning at the Women+s Cancers Programme at the CRUK Cambridge Centre. Some patient members are co-applicants with researchers and clinicians on grant funding applications. The group is also involved in advising in the development of the new Cambridge Cancer Research Hospital, due to open on the Cambridge Biomedical Campus. We ask all our members to sign a confidentiality agreement so that they can fully engage with researchers, clinicians and industry partners in conversations about initiatives that are still in development.

Our patient members are actively involved in workshops and symposia and regularly present on their work and ours, where they share a patient’s perspective. Some of our patients have presented at international symposia, as well as sitting on governing boards, including the CRUK Cambridge Centre’s Scientific Advisory Board.

One of the biggest impacts of our PPIE group was advocating for the introduction of deep whole genome sequencing in ovarian cancer care in the National Health Service (NHS) in England. Prior to 2022, ovarian cancer samples were tested for faults in the BRCA1 and BRCA2 genes, but other important information from their cancer genome was not tested for. The NHS introduced whole genome sequencing for paediatric and haematological cancers in 2020. Our patient group campaigned about the importance and potential benefits of whole genome sequencing for ovarian cancer because it has the most complex genomic ‘wiring diagram’ of all cancer types. This work led to a pilot study which made whole genome sequencing available as a ‘standard of care’ test for all ovarian cancer patients in England. A manuscript will be published soon.

As an established PPIE group, our members are often asked to advise other cancer centres and organisations across the country. One example is the Demonstration of Improvement for Molecular Ovarian Cancer Testing (DEMO) project in Birmingham. This project set out 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 Black, Asian and Minority Ethnic groups. The project team, including several members of our PPIE group, co-created a series of animations 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 are available online. Since the launch, genetic testing uptake has risen. As well as producing accessible information about genetic testing for ovarian cancer patients, the project team also launched a new co-production group of volunteers, keen to make an impact on women’s cancers in the wider Birmingham area.

Never give up!

A big thank you to all our PPIE contributors.