Case study: Becoming a Research Champion: Julie's story

Please tell us a little bit about yourself and your experience of health research

I’m Julie, a Research Champion from the East Midlands, and I’d like to tell you a bit about me and why I got involved with research.

I’m a 66 year old widow, mother and grandmother of twins. When I was 49, I was diagnosed with breast cancer. My consultant could have handled the news better; hearing ‘it’s cancer, it’s advanced and it’s inoperable’ was a huge shock to me, especially after my GP had initially referred me saying that it was nothing to worry about. I now know that this was not unusual for many cancer patients and it made me think that this is not good enough.

I had the full gamut of treatment - chemotherapy, surgery, radiotherapy and hormone drugs and came out on the other side. Unfortunately, I got a second primary cancer (Parotid) four years later. In some respects this is a good one to have because it is curable, but the treatment has left me with long term problems. Five years ago the breast cancer returned, leading to more chemotherapy, radiotherapy, hormone drugs and two lots of surgery. I am not on the final drug available before I go into palliative care.

Without research and new drugs being developed, I would not be here today.

What motivated you to become a Research Champion?

Being an inquisitive person, I looked into ways that my experience could help to improve treatment for new cancer patients, extend their life expectancy and help their families. Living in a lovely remote cottage on a baronial estate in Lincolnshire with two dogs and a cat for companions can be a mental and physical struggle. My family is in Cornwall, so I have to be self-reliant. But getting involved in research has definitely helped my mental and physical strength - it’s a ‘quid pro quo.’

What activities have you been involved with as a Research Champion and what difference do you think they make to others and to research?

I work closely with the CRN East Midlands, particularly with senior staff involved in developing and delivering cancer research, to offer insights and provide a patient voice based on my own experience. I am part of a regional group with other Research Champions which enables us to provide feedback and guidance from a participant perspective. I’m also now a member of various national research groups, but that’s not for everyone.  The opportunities are there if that’s what you are looking for and there is something for everyone.  I’ll point you in the right direction if you want!

How has being a Research Champion benefited you and how have you been supported?

Being a part of research groups and projects help to connect with like minded people and gives a sense of purpose. I get so much more out of my involvement than what I put in. 

Is there anything you would like to say about being a Research Champion, including to others considering volunteering in this role?

You have to be resilient, pushing at doors that are not always easy to open - but when they do,  what a real sense of achievement. It is a great way to make a difference and to help future and current generations, so be bold and go for it!