For patients

Advances in clinical and translational oncology should be driven with patient benefit in mind and the value of research to patients should always be conveyed so they understand the state of their disease. Active patient involvement in the research and decision-making process is not where it should be, but is becoming more frequent and many patients and healthcare professionals highlight the increased quality of life this involvement produces.

Patient advocacy and patient engagement are two relatively recent ideas that have spurred the increasing focus of research onto patients. These concepts can be considered as two sides of the same coin: patient advocacy is driven by patients, carers, families – those most familiar with the impacts of chronic illness and with a desire to improve the benefit that research and development brings for patients; patient engagement describes the role of researchers and clinicians in gaining the input of patients in the development and application of their research and treatment.

Technically, all medical research should be described as ‘for patients’, but the idea tends to have most relevance to clinical trials, screening and early diagnosis, health economics and outcomes research, use of electronic health records and addressing healthcare disparities, although this is far from an exhaustive list.