Last week, BCI held the 2018 VOICE (Vision On Information, Confidence & Engagement) course- a study week that aims to take patient advocates from bedside to bench by providing an introduction to basic cancer biology, research terminology and study design. This unique course was developed by Independent Cancer Patients’ Voice (ICPV)- a patient advocate group led by patients for patients- to empower patient advocates and increase their confidence to get involved in the cancer conversation. This was the fourth VOICE course to be held at the BCI out of a total of five. The 2016 course was held at Warwick Clinical Trials Unit.
Patient advocates are extremely important to cancer research and contribute in numerous ways by bringing the patient voice to the forefront of clinical research and trial design, with the ultimate aim of improving outcomes for future cancer patients. ICPV are dedicated to educating cancer patients about various types of cancer, improving their clinical knowledge and research awareness, and helping them to communicate effectively within the cancer research community. This provides researchers and clinicians with an invaluable patient perspective on clinical trial design and development.
BCI’s Prof John Marshall, one of the tutors on the VOICE course, said:
"Our patient advocates wish to sit on academic, pharmaceutical and government committees making policy or directing funds. The VOICE course is to empower them to have the basic knowledge that allows them to confidently speak up when surrounded by scientists and clinicians at these committees. It is such a pleasure to teach these amazing people whose lives have already had such challenges and just want to make the future better for others. Now VOICE trained advocates sit on 3/4 of CRUKs original Grand Challenge teams which is fantastic. It is a huge privilege to get to know the VOICE students and sharing their experiences is truly humbling. I wish to thank them all."
The 5-day course, which took place from 3rd-7th September, included lectures and laboratory sessions. The students learned about what cancer is, how it develops, and how it is detected and treated with BCI researchers, including Prof Marshall, Dr Richard Grose and Prof Louise Jones. The students developed their understanding with practical sessions in the laboratory by looking at how DNA, cancer cells and tissues are examined.
One of the students spoke of their experience of this year’s VOICE course:
The lectures were varied and informative, interspersed with some fascinating facts which added that extra interest. The lab sessions took me into the unknown and were exciting, something I haven't done before.
Processing the specimens and seeing cancer on the finished slide along with Louise's dissection of breast tissue really brought it home to you -certainly me- the cruelty of cancer. When we went into the lab for that session I was aware of the immense concentration, silence and respect.
I take away with me an increased confidence to communicate with scientists on research projects, and certainly to pass on to other constituents what I learned from the week.
Dr Michael Allen, a postdoctoral researcher who has helped with the laboratory sessions on three of the VOICE courses, said:
"It is impossible to put a value on the opportunity for us as scientists to speak with and interact with cancer patients. This interaction changes the texture and reasons for why we are doing cancer research, it focuses the mind on what is truly important and helps us to work with renewed vigour to help beat cancer."
"I personally love doing the VOICE course, helping to show the advocates what I do in the lab and listening to their experiences and concerns. I think it would be very beneficial to a scientist at any stage of their career to be involved in such a programme."
Dr Grose added:
"Taking part in the VOICE course is a real privilege – the opportunity to talk with incredible people whose lives have been deeply affected by cancer, either directly or via those they love, makes one see our work from a different perspective. Discussing topics from basic cell biology through to targeted therapies with such an informed and dedicated group of students makes for an intensely humbling and rewarding teaching experience."
Dr Adrienne Morgan, co-founder of ICPV, said:
Following my diagnosis of metastatic breast cancer, I had the idea of approaching Prof Louise Jones in 2012 to see what she thought of running a science course for cancer patient advocates at BCI. We ran the first VOICE course in September 2013 and I feel extremely proud when I see our VOICE graduates pop up on trial management groups, grant awarding bodies and government and NHS groups; challenging all around them, giving their unique and valuable opinions based on hard experience, with confidence and without fear of not being listened to.
- For more information about previous VOICE courses, please visit the ICPV website -