Patient story: Supporting patient advocates to champion and develop research
Every year, more than 55,000 people are diagnosed with breast cancer in the UK.1 In 2005, Lesley Turner, from Southampton, was diagnosed with invasive breast cancer, a condition where cancer cells grow through the lining of the ducts into the surrounding breast tissue.
Invasive breast cancer is the most common type of breast cancer and current research is focused on causes, prevention and diagnosis, as well as finding new, and improving existing, treatments.2
As part of her treatment, Lesley underwent a radical mastectomy, which involved removing the entire breast, three levels of underarm lymph nodes and the chest wall muscles under the breast. Since her treatment, Lesley has immersed herself in the world of patient and public involvement, becoming a patient advocate to support further research into the disease. Lesley comments, “It’s about putting something back. We know that we’re only alive because of research.”
In 2009, Lesley was invited to join Independent Cancer Patients’ Voice (ICPV), a registered charity with membership from breast cancer patients who have a keen interest in research. As a patient-led organisation, ICPV brings the views and experiences of cancer patients, their families and carers into the research community. By providing a forum for learning and debate, it enables patients to have an effective independent voice in research. It advocates that clinical research is improved by patients being partners with clinicians and healthcare professionals, rather than passive recipients of healthcare.
As a member of ICPV, Lesley has been involved in a number of projects. For example, ICPV members were successful in securing clinician time to allocate to the training and development of patient advocates. Lesley explains: “Our Chair, Dr Adrienne Morgan, persuaded scientists and clinicians at Bart’s Cancer Institute to develop a full week’s training programme for us, during which we spent time in the lab learning about sequencing DNA, using pipettes, and watching a pathologist dissect a mastectomy and look at the invasive cancer in the tissue. The course provided an introduction to research terminology and study design, and critical evaluation of research proposals and scientific papers. The course is unique and the only of this type in the UK. The first course took place in 2013 and I think it’s been running every year since. I believe that it’s really important to educate and mentor patients so that we can be more valuable as patient advocates.”
Lesley was also a member of the National Cancer Research Institute’s (NCRI) Supportive and Palliative Care Clinical Studies Group, and sits as the Co-Chair of the NCRI Breast Clinical Studies Symptom Management Sub-Group. As part of her work with the NCRI, Lesley and the NCRI Consumer Forum became involved in the annual national Cancer Patients’ Experience Survey and successfully campaigned for a question about research to be added. In the latest survey, which was published in 2018, 31% of respondents said that since their diagnosis, someone had talked to them about whether they would like to take part in cancer research.3 At a recent breast cancer surgery event hosted by the Clinical Research Network (CRN) Wessex, Lesley presented the findings of the survey and challenged clinicians to think about the differences in research opportunities for patients with different cancer types.
Lesley is also a member of both Breast Cancer Now’s Tissue Bank Advisory Council and the Breast Cancer Now’s Catalyst Grant Committee, which has funded numerous studies to date to the value of approximately £10 million. She is a co-applicant on a number of trials including the YodaBRA trial, which designed and tested an online interactive genetic testing decision aid for young women diagnosed with early stage breast cancer.
Alongside another ICPV patient advocate called Hilary Stobart, Lesley has supported Cancer Research UK with both the design and running of the PRIMETIME trial, which is investigating biomarker-directed radiotherapy treatment for breast cancer patients. The trial is trying to find out if a group of women can safely avoid radiotherapy because their risk of the cancer returning is so low that the potential benefits associated with radiotherapy are unlikely to outweigh the known risks. The researchers believe that patient involvement heavily influenced the design of the study, ensuring it was focused on the needs of patients. The research team also feel that the patient partnership has really improved the quality of the trial and helped to ensure that recruitment is currently exceeding planned projections. They feel that this has happened because Lesley and Hilary have been fully involved as part of the team from the early stages of the trial’s design.
The National Institute for Health Research (NIHR) offers a range of opportunities for patients, carers and the public to get involved in health and social care research. From taking part in clinical trials to working in partnership with researchers and healthcare professionals to improve the quality of research. Discover opportunities to be part of research on the NIHR’s website.
1 Source: Cancer Research UK
2 Source: Cancer Research UK
3 National Cancer Patient Experience Survey 2018: National Results Summary. Available at: www.ncpes.co.uk/reports/2018-reports/national-reports-2018/4539-cpes-2018-national-report/file