Meet our Patient Representatives
The ATNEC patient representatives provide valuable input to the ATNEC trial from a patient’s perspective and are key members of the trial management group. They have inputted into the design of the study and have also worked closely with the team conducting the qualitative sub-study which will gather data on the quality of life of participants both during and after their treatment.
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.