Cancer patients and their experience of primary and secondary care

Posted by jchoules

24 August 2016

Research into patient reported experience of primary care has been going on in Exeter for a number of years. Before I moved to Exeter I worked on a joint programme of work (IMPROVE) between Exeter and the University of Cambridge aiming to get a better understanding of data from the GP Patient Survey. In the next month or so work will begin on a new project funded by MacMillan cancer support, jointly with University College London, looking at the Cancer Patient Experience Survey. Unlike the GP Patient Survey the Cancer Patient Experience Survey is a survey of those recently treated in hospital and so what does this have to do with Primary care

Whilst much of the questionnaire is focussed on hospital care, there are a number of questions in the Cancer Patient Experience Survey which look at pre-diagnosis experience and post-treatment experience, both of which feature heavily in the primary care setting. These are also, potentially the hardest to interpret. Some work we have done previously has shown that whilst survey respondents are reasonably representative of recently treated cancer survivors they have a quite different make-up to incident (new) cancer case or prevalent (existing) cancer cases. If we want to know about people’s experience of being diagnosed then we should want to know this among new cases, rather than among those currently being treated. Similarly if we want to know what experience of care is like after leaving hospital then we should consider all those people with cancer (the prevalent cases).

As part of the project we will estimate what the experience of care is for those being diagnosed and those being cared for after their hospital treatment. In simple terms we will give more weight to responses from under-represented groups and less weight to those over-represented. By doing this we will have a better idea of how good or bad the experience of cancer care that takes place in primary care is and in turn we will be better able to inform improvement efforts. This is just one part of the three year project which will cover all aspects of the survey all with the overall aim of informing improvements to cancer patients’ experience of care.

Dr Gary Abel

Senior Lecturer in Primary Care, UEMS