Understanding the experiences of secondary breast cancer patients and clinical trials

  1.    What’s the title of the project? 

A national survey to understand the experiences of secondary breast cancer patients and clinical trials

  1.    What is the project about?

A patient representative within the National Cancer Research Institute (NCRI) Breast Clinical Studies Group, Lesley Stephen, highlighted her personal experiences related to the difficulties in both identifying relevant clinical trials, as well as accessing these. She identified that this was an issue amongst the secondary breast cancer (SBC) community, and with the support of the NCRI has initiated this national survey. It will be run in collaboration with the charity Make 2nds Count and the Universities of Warwick, Liverpool and Southampton.

It will involve patients completing a brief survey about their experience. The survey will aim to explore SBC patient-specific issues related to accessing and participating in clinical trials, as well as patients’ needs and experiences within studies. A small cohort of those who leave their contact details at the end of the survey will also be interviewed via telephone. The survey is accessible online and we hope to gather information from at least 10% of women and men living with metastatic or secondary breast cancer in the UK.

The survey results will be published in journals and will be presented at workshops and conferences, to health professionals, patients, and academics. The aim is that this will help to inform future practice.

  1.    Who’s organising it?

Name of individual(s): Claire Balmer

Name of organisation(s): University of Warwick

Contact email: Claire.E.Balmer@warwick.ac.uk

  1.    What’s the criteria for taking part?
    If you have secondary breast cancer, you will be eligible to complete the survey

  2.    What do I need to do?
    We would like you to complete a survey, which you can access via this link. You can also scan the QR code on the attached poster, which will take you straight to the survey. There will also be posters promoting the survey throughout UK hospital clinics, and Maggie’s Centres, including information on how to take part.

  3.    When is the deadline?
    31 October 2021