Meet our Patient Representatives

Jan Rose

I have been involved with the ATNEC study since 2018 when Amit Goyal, the Principal Investigator, presented his thoughts and ideas to a group of patients at the National Cancer Research Institute Consumer Forum Dragon’s Den session. Since then I have worked with the researchers on this study as a co-applicant as the application for funding was made.

As a breast cancer patient myself I have been able to comment and advise on aspects of this study from the point of view of a patient. I have been involved in writing the lay summary, the patient information sheet detailing the study and the consent form for the study. I am part of a team looking at the experience of the patients taking part in the study. I am a member of the Management Group alongside the researchers which meets quarterly as the study progresses.

Helen Teresa Edwards

I was diagnosed with breast cancer when in my early 40’s. Subsequently I had a large lumpectomy, nodes removed, chemotherapy, radiotherapy, and reconstructive surgery (which involved work on both breasts). Prior to chemotherapy, I was asked to participate and took part in 2 clinical oncology trials.

I currently take aromatase inhibitors.

Whilst undergoing treatment, I was asked to give a talk to medical and nursing staff on my reasons for participating in the trials. I subsequently became a member of Independent Cancer Patients’ Voice which provides informed Lay Public and Patient Input into clinical trials. As an ICPV representative, I aim to bring the patient’s voice into clinical research to improve outcomes such as mortality, morbidity, and quality of life for the patient.