Case study: patient advisory group at the Precision Breast Cancer Institute, Cambridge UK

Patient voices can inform research and healthcare delivery in different ways, and at different levels.

Research organisations can convene Patient Advisory Groups to assist in many aspects of their work, from project-specific advice to wider strategy. One example of this is at the Precision Breast Cancer Institute in Cambridge UK.

The Precision Breast Cancer Institute (PBCI) at the University of Cambridge provides a link between lab-based research, clinical trials and clinical implementation. It delivers and coordinates clinical studies and supports sample collection for clinical trials. It’s the central hub for collaborative breast cancer research within the Department of Oncology and Cancer Research UK (CRUK) Cambridge Centre.

The PBCI’s main study is the Personalised Breast Cancer Programme (PBCP), which incorporates Whole Genome Sequencing (WGS) into the care pathway of breast cancer patients. The programme aims to answer the following three questions:

• Is it feasible to incorporate WGS into the care pathway for breast cancer?
• Can we get the results to patients in 12 weeks?
• Do the results have potential to personalise treatment?

In addition, patients taking part in the study can also donate blood, tissue and faecal samples throughout their treatment, alongside clinical and follow-up data which is collected for 10 years following their recruitment date. This decade of data is used for research.

Between 2016 and June 2025, the programme has recruited over 1,800 participants from 6 hospital sites in the East of England (1823 female, 5 male). Patients with any breast cancer type are recruited. Around 90% were recruited with early stage breast cancer and 10% with advanced breast cancer. Over 80% of the WGS results have been returned to patients within 12 weeks, showing that it is feasible to incorporate WGS in clinical practice and provide results in a timeframe that can inform treatment. From a research perspective, the genomic and clinical data is being carefully analysed to assess the overall and potential impact of WGS for patients with breast cancer. There are also a number of collaborative projects analysing samples that have been collected.

A Patient Advisory Group (PAG) was set up to advise the PBCP, and has been involved since the study was first developed in 2015/16. The PAG currently has 8 members, all of whom have lived experience of breast cancer. Although the membership has changed during the nine years of the programme, the group has continued to shape and improve the project ever since the study was developed. The group meets every two months. The group and meetings are supported by the Senior Research Nurse and Clinical Research Practitioner at the PBCI and CRUK Cambridge Centre Breast Cancer Programme Manager. The PAG is a valued part of the Breast Cancer Clinical Research Team within the CRUK Cambridge Centre.

The PAG has co-developed patient-facing materials on several different aspects of the Programme’s work. These are laid out very clearly, while retaining important information for patients and their families.

An important document that is unique to PBCP is the Genomic Report that each participant receives to summarise what the study identified in their DNA that could be used to personalise their treatment. The PAG helped to provide clear definitions of terms used in the report and they emphasised the need to reinforce whether changes were linked to inherited DNA changes or not.

The PAG also wanted to know more about certain aspects of the study, prompting the Breast Cancer Programme Team to develop the following infographics.

Action point

Click through to take a look:

Personalised Breast Cancer Program: what happens to samples?

What is Pharmacogenomics?

What is circulating tumour DNA (ctDNA)?

With thanks to: Joanna Worley (Breast Cancer Programme Manager, CRUK Cambridge Centre, Precision Breast Cancer Institute), and Rhys Grant (Engagement Lead, CRUK Cambridge Centre).