The Leeds project team Julia and Choon Key attended the Life with Cancer 2017 event on 16 November 2017 in sunny Harrogate. Hosted by Yorkshire Cancer Research, this one day event included presentations on lifestyle and cancer, managing side effects, coping with cancer, and getting involved in clinical trials, featuring speakers from across the cancer community. This event also included practical sessions such as Pilates and mindfulness and one information session providing financial and legal advice. It was great to see that one session was especially designed for carers. Over 32 exhibitors attended this event to provide cancer patients and their family members with information and support.
Being able to speak about the Wellcome project to a number of patients and family members, as well as people from various cancer charities, throughout the day was particularly rewarding. Julia and Choon Key also managed to identify several people with direct experience of genomic medicine so it was a very productive day in recruiting research participants.
One session that both Julia and Choon Key were particularly keen to attend themselves was on getting involved in clinical trials. This session consisted of four presentations from four different perspectives. Julia Brown’s informative presentation about what a clinical trial is was followed by Debbie Beirne who highlighted the pros and cons of research participation from a patient perspective. Debbie, who is leading Yorkshire and Humber Genomic Medicine Centre’s patient involvement panel hinted at how genomic medicine might transform patient’s research participation, for instance in non-research NHS transformation project such as the 100,000 Genomes Project. A urological cancer specialist Jim Catto then explained how clinical trials help patients and participating hospitals. The last presentation by Deirdre Walton was the highlight of that session as the team is keen to hear from patients’ point of view.
Deirdre shared her positive experience of participating in the Optima prelim trial at York Hospital. The OPTIMA prelim trial was a randomised feasibility study of personalised care in the treatment of women with early breast cancer and this is testing validity of Oncotype DX test. Given that Oncotype DX test is now routinely offered in England for some oestrogen receptor (ER)-positive, human epidermal growth factor receptor 2 (HER2)-negative breast cancers, this trial has indeed made a real life impact to a large number of breast cancer patients.
The discussion after four brilliant presentations was also interesting for our Wellcome Trust project as it showed research participation could still be challenging for many patients. The issues raised during the discussion included health care professionals’ failure to speak ‘language of people’ but Debbie emphasised that inputs from public and patients in patient information sheets have made noticeable changes. There was also discussion about the disappointment when patients are being allocated in control arms – this shows that patients might have an assumption that intervention is better than non-intervention, which requires clarification when research participants are recruited.
Kathryn Scott, the Chief Executive at Yorkshire Cancer Research, closed the event by encouraging attendees to support each other and hinted that Yorkshire Cancer Research might be up for hosting another similar event next year.