Latest news from the NCRI Consumer Forum
NCRI Consumer Forum members had a busy 2015 NCRI Cancer Conference. A poster on show, the highly esteemed Dragon’s Den and a 50 hour ‘hackathon’.
Poster: the Forum’s latest analysis of the National Cancer Patient Experience Survey
The Forum’s latest analysis of the 2014 National Cancer Patient Experience Survey (NCPES) data looked at the association between age and access to research opportunities. They found that there has been little change nationally from 2013 and that older patients are still not asked to take part in research as often as younger patients. Lead author of the research Carolyn Morris presented the research to delegates during the poster session at the Conference. She said “These findings show inequality of access to research opportunities for cancer patients. And they show that overall things aren’t changing….It is in everyone’s interest to have more research opportunities in our cancer services, for those opportunities to be offered to cancer patients, and for patients, advocates and charities to ask for them.”
» View the poster presented at the 2015 NCRI Cancer Conference (PDF, 2015)
The NCRI Consumer Forum Dragon’s Den – including a ‘hackathon’
The NCRI Consumer Forum’s Dragon’s Den is an opportunity for researchers to put their study proposals to a panel of consumers and gain the benefit of their unique perspectives and experiences. This year the event was sponsored by Cancer Research UK – and it was even bigger than previous years, with nine research teams attending to meet with nearly 100 consumers. The research ideas discussed ranged from early phase pharmaceutical studies, later phase radiotherapy trials, and even the launch of a 50-hour ‘hackathon’ with AstraZeneca, looking at designing a mobile application for trial participants.
“This year was more crowded than in the past,” said NCRI Consumer Forum Chair, Richard Stephens, “But also more purposeful. We had a little more time and many of the consumers and some of the researchers have done it before.”
“We were pleased to come back to the Dragon’s Den,” added Jenny Royle, an AstraZeneca researcher, “And we are learning to harness consumer involvement for a variety of reasons – a couple of clinical studies, our ‘hackathon’ and a very useful discussion on certain types of side effects and how patients and carers view the balance between severity and frequency.”
“It was good too to link the Dragon’s Den event more closely with other Conference activities,” Richard added, “We supported CTRad researchers preparing for their Wednesday workshop and we helped NIHR with a proposal that links to their Patient Research Ambassador programme, which was the topic of other work later on at the Conference. And on Wednesday morning, we had another session with AstraZeneca to conclude their 50-hour global ‘hackathon’, which was not only very enjoyable for us, but helps us to encourage pharmaceutical companies to continue their support for the Conference.”