User Involvement in Cancer Care: Exclusion and Empowerment

There is a widespread commitment to involving people in their own healthcare. Politicians argue that it is a good thing and those providing healthcare are eager for advice about how best to do it. Throughout the country there are many different approaches to involvement underway, and there is much that people can learn from the successes and pitfalls encountered by others. This publication, based on an original study conducted in the Trent Region of the NHS, identifies the various ways in which user involvement has developed in relation to cancer care. Cancer care involves all of us. Most people in the UK will have direct experience of cancer, either as a patient themselves or when someone close to them is a patient. The findings presented here, then, have widespread relevance. But the relevance of these findings goes beyond cancer. When considering user involvement in relation to other areas of need, looking to the experiences of cancer care can provide guidance. Specific guidelines are included on how to develop user involvement from both a user and provider perspective. The findings and recommendations will be of interest to cancer service planners, managers, researchers and user groups, in addition to all those interested in expanding and empowering the role of the user.