Patients & Public
Public and patient involvement (PPI) is an important part of research, and of this initiative. Ultimately, it is patients who are the intended beneficiaries of research, and are likely to be most aware of gaps in clinical care. As such patients should have an opportunity to voice their opinions and ideas in order to influence the research agenda to improve clinical care. A patient representative sits on the Steering Committee to ensure that patients’ opinions are taken into consideration in all of our work.
Long term goal
In the media we are told, almost daily, what we should eat and not eat, the latest superfoods proven to ‘cure cancer’, special diets to follow and supplements to take. There is a wealth of information freely available on the internet, in books and magazines about food, diet and nutrition. Much of this advice is of dubious quality because it is based on poor evidence and is patchy, inconsistent and often difficult to follow. This leaves members of the public and patients feeling lost and confused about what to eat for the prevention of cancer and how to manage cancer post-diagnosis.
It is a daunting task to try to fill these evidence gaps. We need good quality research and robust evidence to inform clinical care and to ensure that patients receive the best possible nutritional advice and care in relation to cancer. This is by no means an easy task. The Collaboration’s goal is to facilitate this ambition: we believe that patients have a key role to play in making this happen.
Share your experiences
We would like to hear from patients and members of the public about any nutrition-related issues they have experienced in relation to cancer. This will help us to understand where the biggest gaps lie in terms of information provision, treatment and support. Did you feel your nutritional needs were met in relation to cancer? Was there any specific information or support you would like to have received? Was there anything that was handled particularly well?
Please note that we will not be able to answer specific questions but your questions will help inform our future work. All questions and comments will remain anonymous.
Lesley Turner is the lead of the Patient and Public Involvement work stream. In this video she speaks about her own experiences in trying to find trustworthy advice on nutrition when undergoing treatment for cancer and some of the findings of the Patient Survey conducted in Phase One of the Cancer and Nutrition NIHR infrastructure collaboration.
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