Involving patients, improving research

The NCRI involves people affected by cancer across the breadth of its activities. With the right input into research at the right time, Patient and Public Involvement 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.

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 NCRI works with almost 100 Consumers at any one time who have wide-ranging experiences of cancer and its treatment, so any research discussed within the Den will benefit from the involvement of NCRI Consumers.

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.

Richard Stephens, NCRI Consumer Forum Lead.

In the ‘Den’ participants discuss proposals at any stage of the research process, from patient information and consent, studies seeking support for funding or ethics applications, trials with recruitment problems, to completed studies which require dissemination by 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 people affected by cancer and researchers: “This event provided a rare opportunity to gain insight from patients into their experiences of clinical trials and 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.”

Events like these are only beneficial if they do influence the researchers and have an effect on the research. Feedback from researchers taking part in the ‘Den’ events suggest they do just that, further demonstrated by researchers attending later events to seek further guidance on their research.

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. [We will] try to meet small groups of patients more regularly to discuss our results.

Professor Rachet, Professor of Cancer Epidemiology, London School of Hygiene and Tropical Medicine

This is just one example of the many ways the NCRI involves Consumers, improving cancer-related research and making a difference to the lives of people affected by cancer and the wider public.