Empowering the People for Cancer Research

Dr. Lee Campbell, the Science Projects and Research Communications Manager at Cancer Research Wales, writes about his time at the Barts Cancer Institute. He leads on all research projects funded by Cancer Research Wales, monitoring progress and assessing outcomes of a diverse range of scientific and clinical research and development projects.

A week at the Barts Cancer Institute

cancer research bartsAt the start of September, I had the pleasure of representing Cancer Research Wales at the Barts Cancer Institute in London. I attended a study week on cancer research for the lay person, and met a great bunch of people and made many new friends! The event was organised by three wonderful and hardworking ladies, Bec Hanley, Maggie Wilcox and Adrienne Morgan of Independent Cancer Patient’s Voice (ICPV). They teamed up with the scientists and clinicians at Barts for a week of serious learning that was delivered with much fun and enjoyment.

The course was designed to further equip patient-advocates with an up-to-date working knowledge of cancer research. I eagerly travelled to London along with my fellow Welshmen Jim Elliott, Steve Thomas and Brian Burt of the Wales Cancer Bank, as we are collectively looking to develop something similar in Wales in the not-too-distant future.

 

The role of the patient-advocate

Patient-advocates play a vital liaison role, forming a bridge of trust and communication between the patient and the healthcare provider. Their reassuring presence in the field of cancer care is a great source of strength and encouragement to all, as the very mention of cancer can at first create fear, uncertainty and stress in the lives of many newly diagnosed patients.

Patient-advocates come from a variety of backgrounds but many are laypeople who have been directly affected by cancer, or have cared for family members. As a result of their experiences, patient advocates often have a full understanding of the patient pathway. This allows them to undertake many tasks on behalf of patients, from arranging hospital appointments to explaining how the various kinds of treatment work. Patient-advocates are uniquely positioned to signpost patients to the necessary help and advice from the many available resources that they can draw upon during their cancer journey.

 

Learning about cancer

cancer research bartsThe course at Barts was structured around a well-balanced series of lectures and experimental sessions.  In the morning lectures, we learned about cancer genetics and cancer biology, different cancer types, and new cancer treatments. These were followed by afternoon laboratory sessions, where we carried out experiments relevant to what we had learned in the lectures. For most, this was the first time that they had ever stepped into a laboratory. Pictured to the left is Dr Jim Elliott, who has a PhD in pharmacological microbiology, but who quickly found himself having to re-negotiate experiments again for the first time in over 30 years! During the week I got to analyse my own DNA, as well as seed and grow some breast cancer cells and stain microscope slides containing cancer tissue for the detection of certain tumour promoting molecules. cancer research barts

To the right is pictured Dr Adrienne Morgan, herself a cancer patient, teaching us all the technique of cell culture. On the Thursday afternoon we were privileged to attend a working pathology laboratory where we observed Professor Louise Jones, consultant pathologist and course tutor, dissect a breast tumour taken from a consenting patient. We were talked through all the crucial steps that a pathologist has to take before arriving at that critical diagnosis.

 

The future of public engagement in cancer research

Over the course of the week, everyone had their eyes opened as to how complex and cunning different cancers can be, but far from feeling powerless, we were all left feeling totally empowered and better educated to undertake our own unique role in the fight against this terrible disease. We all felt admiration at what scientists have learned in recent years, and equipped with this knowledge, how far doctors have progressed in treating cancers more effectively.

Although we tend to rightfully admire the scientists and clinicians who work tirelessly to make a difference, it is the patients and the public who are the real heroes. Without their involvement in cancer research, progress would quickly grind to a halt. There still remains much to be done, but as a result of the Barts study week, there are people now more confident and capable of carrying the message to others of the importance of public engagement in cancer research.

I would like to thank all the staff at Barts for putting together such an excellent and informative week, particularly Professor John Marshall, Dr Richard Grose and Professor Louise Jones. With public and patient involvement in research increasingly forming part of the strategy and policy of many cancer charities and government bodies, including the Welsh Assembly, I would highly recommend anyone working as a cancer patient-advocate to attend a future course.

It was a tribute to the course organisers that many of the delegates wished the course was longer. Mrs Sharon Paradine, a retired oncology nurse and hospice director, epitomised the week when she said “That was a light bulb moment, and it is clear just how ill-informed patients are in how cancer drugs work”. With study weeks such as this, no-one needs to remain ignorant about cancer and its treatment, and that can only be a good thing.