Involving patients, improving research
Bringing together people affected by cancer and researchers can greatly improve the quality of research and its outcomes, resulting in research that creates a benefit for people with cancer.
The NCRI involves people affected by cancer across the breadth of our activities. With the right input into research at the right time, Public and Patient Involvement (PPI) like this can improve the quality and relevance of research, ensure that we’re investing in the right areas of research, and that research findings are being translated into patient benefit.
People affected by cancer who contribute to NCRI activities are known as ‘Consumers’ and are members of the NCRI Consumer Forum. Consumers sit on all of the NCRI’s external committees and groups, and they also run activities themselves.
Innovative ways to bring the right people together
One of the activities the NCRI Consumer Forum hosts is a ‘Dragons’ Den’, which builds on the theme of the television programme of the same name, and is an opportunity for researchers to present their research ideas to people directly affected by cancer.
“The Dragons’ Den is a great way of supporting researchers to talk directly with patients and carers and vice versa – and for all of us to learn from each other.” Says Richard Stephens, NCRI Consumer Forum Lead.
In the ‘Den’ participants discuss proposals at all stages of the research process such as patient information and consent, studies seeking support for funding or ethics applications, trials with recruitment problems, or completed studies needing dissemination or lay champions.
The events are a great example of how NCRI encourages collaborative and productive involvement from patients and carers. Researchers apply in advance to attend the session, so that Consumers with experience in a particular topic or issue can be assigned to a relevant research proposal.
One researcher agreed that the approach was an excellent way to bring together Consumers and researchers: “This event provided a rare opportunity to gain insight from patients into their experiences of clinical trials and the receiving of new cancer therapies. The quality of this feedback was very high enabling us to integrate this thinking into our drug development programmes and shape our approach.”
Because our Consumers have experiences of cancer that include the whole spectrum of the condition, any form of cancer-related research can be brought along to the event to benefit from their input.
Events like these are only beneficial if they actually influence the researchers and have an effect on the research. Feedback from various ‘Den’ events suggest that they do just that – further confirmed by the fact that some researchers come back to future events for further guidance on their research.
Professor Rachet, Professor of Cancer Epidemiology, London School of Hygiene and Tropical Medicine, told us about the impact that the event had on his research team:
“The Dragons’ Den research tables provided confirmation that we are going in the right direction in many cases. Our researchers and clinicians were amazed by the exchange and what we can learn from the patients. What we take from today is that we should try to meet small groups of patients more regularly to discuss our results”.
This is just one example of the many ways that the NCRI involved Consumers, improving cancer-related research and making a difference to the lives of people affected by cancer.