In October 2007, at the age of 39, Michele was loving life. Married with 2 children, she was working hard as a ward sister in a job she loved. Then she was diagnosed with advanced Non-Small Cell Lung Cancer and invited to take part in the SOCCAR trial.
In March 2017, Michele took part in our focus group for people who had experience of participating in a trial. The group discussed what information should be available for people on their clinical trials.
Here Michele tells us about her experience and why she feels it is so important for people affected by cancer to share their views.
How did you find out about patient involvement at Cancer research UK?
I was involved with the Liverpool Healthy Lung programme where another patient, Terry, told me about his involvement with Cancer Research UK. So I looked on the website and thought I'd really like to be involved too. It is great that patients and their families are now becoming more involved in decision making.
Why did you want to get involved in the focus group?
When you take part in a clinical trial, especially after a cancer diagnosis, your thoughts are everywhere. You just go through the motions at the time to get yourself through it. But when I look back, I realise there wasn't enough information about the trial after I'd given consent. As patients, we want to know what's happening in the trial and what the results are, not just for us but for future patients who have yet to be diagnosed. We want to help make a difference, too. Only by listening to patients' views, at focus groups and discussions like this, will the experience become more positive for others taking part in trials in the future.
What was taking part in the focus group like?
The focus group I attended was in Manchester. I was given all the information I needed to prepare for the day and although I didn't know anyone when I arrived, the relaxed atmosphere helped to get the discussion going. We all came away thinking our experience and opinions mattered, that Cancer Research UK really listened to us and that we had a voice.