Impact of ‘real world data’ on cancer patient outcomes and care


Session type:

Anna Gavin1
1Northern Ireland Cancer Registry, Queen's University Belfast, Belfast, UK


How can we best address patient questions about achieving the best treatment, their predicted survival, likely side effects and quality of life? This, while answering questions about achievement of standards and costs and coping with increasing cancer numbers fuelled by an ageing population, spiralling costs and interest in improving outcomes. Data collection is expensive yet patient activity generates millions of data items each year which are accessible electronically. In recent years linkages of routine data on cancer patients and their use of services has improved the knowledge available to service providers, researchers and patients. Examples of such research will be presented.

The patient input to research is getting stronger now with the National Cancer Survivorship initiative which has documented cancer patients' wellbeing in Patient Reported Outcome Measures (PROMS), and integration of patients in research funding allocation committees, research steering groups, and outcome dissemination, the challenge is how to empower patients further. Linkages of lifestyle, disease, molecular and service data will provide a complete picture for determination of individual risks and best treatments. Prevalence work dissecting the two million (soon to be three million) cancer survivors to determine where patient live, how long since diagnosis etc. will facilitate more patient centred services and research opportunities.

Areas for discussion include whether patients benefit from this use of their personal data? Whether subgroups can be identified who are neglected in services or research? And is the patient's voice heard?